I realised I abandoned my blog after breaking the news that I was worried about a cyst that was discovered on my left ovary after my CT scan. Oops!
Well, what happened?
As this news was divulged the same week we were going on holiday, we wanted to get some more answers rather than being left out on a limb for a couple of weeks. We called our IVF consultant for information regarding my case so we could present this to the gynaecology oncology department at the QA hospital who have now taken over my care. Very luckily for us, Dr I, our IVF consultant offered an ultrasound to investigate further. This all took place the day before going away on our break.
I was very nervous arriving at Dr I's office. Thankfully, we went straight in to her consulting room so she could perform the ultrasound. Deep breaths and sweaty palms emerged, and the ultrasound commenced. Dr I had a good look, looked longer and kept looking. Nothing. Dr I couldn't see any cyst, in fact the ovary that we thought would be deep fried and crispy from radiotherapy was actually working. I won't go into any further detail, but it all looked quite normal. Dr I couldn't find any reason to be concerned.
Dr I proceeded to write a report regarding my inner workings to hand to the consultant at the QA. This appointment would come after our holiday (which was fab by the way, apart from a norovirus which cut it slightly short - urgh).
So, the appointment with the gynaecology oncology department came and I handed over the report. The consultant was pleasantly surprised by the results but want to give me an MRI scan just to be double and triple sure that all is good in the ovary department. I didn't feel like I was
Ok, all good so far..we think.
Met Dr B my oncologist last Monday week to discuss the rest of my CT scan results. Again, all he mentioned was this enlarged cyst on my ovary and that was the only concern. I was discharged from his jurisdiction, my next stop was the MRI scan.
The MRI came around last Tuesday. That was interesting to say the least! If you've never had an MRI all I can describe it as like being in a coffin with a car alarm blasting away for 30 minutes. I did have earphones in...Mariah Carey's "All I want for Christmas" was on the playlist. All I wanted was the scan to be over! I've had worse procedures but it is quite claustrophobic and disorientating.
So once that was done, all I had to do was patiently wait for my results, which came today.
I got to meet another Dr B, this time a gynaecologist, oncologist and Antipodean. A very upbeat chap who had a warm smile. We sat down and he explained that the cyst I sometimes have and sometimes don't have is a very boring and harmless cyst. My bloods show that my CA-125 was only very slightly elevated, but Dr B wasn't concerned at all as I'm a pre menopausal woman, apparently it's very common to have this marker slightly elevated in younger women around certain times of the month. The MRI showed no signs of any secondary bowel cancer or primary ovarian cancer. Gulp!
I'M OFFICIALLY IN REMISSION!!!
Dr B said he would like to see me in two months just to have another ultrasound on the cyst and have some bloods taken to check the CA-125 levels then it'll be routine scans every 6 months. Dr B then gave me a big smile, shook our hands and wished us a very happy Christmas.
What a complete contrast to this time last year! I'm so utterly relieved, I'm cancer free for now and I always hope to be.
Thank you everyone for supporting me through my blogs. My family, friends, new friends who have been through this journey too and most of all my husband Paul.
Paul, you've been my rock. I love you.
I'm going to end this blog now. I want to move on, but never forget my journey with cancer.
Thank you for reading.
Hayley x
Friday 7 December 2012
Tuesday 6 November 2012
Worried
I've just poured myself a glass of wine. I need to calm my nerves.
I had a call from the hospital today, it seems that my CT scan is clear but for one area which has a question mark over it.
My left ovary has an enlarged cyst on it. Nothing unusual for a lot of women to get cysts on the ovaries but because I've recently had cancer the medical peeps are going investigate further.
It's probably non cancerous, but I have that nagging thought that it could be. The MDT are meeting on Friday to discuss the findings. The likeliest outcome is another operation. Hopefully just day surgery then a biopsy on the cyst.
I would appreciate if everyone could keep their fingers, toes and eyes crossed that the results are good.
I'm not ready for another battle.
Hayley x
I had a call from the hospital today, it seems that my CT scan is clear but for one area which has a question mark over it.
My left ovary has an enlarged cyst on it. Nothing unusual for a lot of women to get cysts on the ovaries but because I've recently had cancer the medical peeps are going investigate further.
It's probably non cancerous, but I have that nagging thought that it could be. The MDT are meeting on Friday to discuss the findings. The likeliest outcome is another operation. Hopefully just day surgery then a biopsy on the cyst.
I would appreciate if everyone could keep their fingers, toes and eyes crossed that the results are good.
I'm not ready for another battle.
Hayley x
Friday 19 October 2012
Stuff that's happened since chemo.
It's been nearly three weeks since my final dose of chemo. I've had a few hiccups since this but nothing major.
I had an over night admission when my last 5FU pump was removed due to a tight feeling in my chest. I had three ECG's, all fine there. The doctor whom dealt with me seemed to think it was the 5FU giving me a last kick before it was disconnected by irritating the arteries around my heart. Apparently this is a less common side effect of this chemo. Nice!
The doctor thought it best to keep me in overnight for monitoring as I was given a tablet to ease the tight chest (can't remember the name of it) - side effects of the tablet included a lowering of blood pressure. Mine is already low, runs at about 90/60 so he didn't want me flaking out at home. This tablet worked wonders, I only had to take half of it! I have to thank my sister in law who is an oncology and haematology nurse on the day unit, for running around the hospital on behalf of the doctor who'd prescribed it...for an hour to get this drug for me, so thank you J. You little star xx
I was given bail the next morning, felt very tired but a lot better. Home was my destination.
A week later came problem(s) number two. I had three 'owwwies' this time in the form of a lump in my arm pit, a massive spot on my face and the site of my picc line being sore.
Attractive.
Being the good patient I am, I didn't want to sit on these problems so another visit to the hospital it was for me. It may sound stupid to a fit person to go into hospital for these issues but I didn't know if I was Neutropenic at the time. The last thing I wanted was to have a bad infection that meant more hospital time.
I'm glad I went in. To be fair, it was actually Paul who'd insisted I get these problems checked out. My biggest concern was the lump under my arm, there was a small hard nodule, smaller than a pea and it was quite painful when I moved my arm. Dark thoughts crept into my mind and I immediately jumped to the conclusion that it was either a) a bowel cancer reoccurrence in my lymph node or b) a primary breast cancer lump.
- Naughty - *slaps own face*
It turned out to be none of these things. It was a blocked sweat gland (eww) and it disappeared within a couple of days.
Lump on my face. This turned out to be an infected spot. Chemo had made my skin regress to my fourteen year old self. I'm not exaggerating when I say this thing had a pulse of its own.
In fact, here's a picture of it:
It was incredibly red and angry. Another one of those strange things that would normally be an embarrassment but for someone who is immune suppressed, potentially a dangerous situation. I'd urge anyone who is on chemo to get these little niggles checked before they get out of hand. As a result of that spot, I was given ten days worth of antibiotics!
Third problem was the picc line. It felt quite sore and irritated at the entry site. The doctor took a look, he didn't seem concerned and said I'd probably just knocked it. Nothing else was done about that.
Happily, no hospital stay was required as my bloods were at an acceptable level to fight infection. Very pleased about that!
Fast forward a few days and I had my post chemo meeting with Dr B, my oncologist. My bloods were checked again in case I needed a blood transfusion, I didn't. My Hb was at 9.4 which has increased since my last chemo so he was happy for my body to do the work. I'm anaemic but not enough to cause any concern so I've been on a leafy green vegetable health drive to boost my iron count. I don't eat red meat which is the best source of iron apparently. Dr B suggested I eat liver....erm, no way!!!
Apart from that, Dr B seemed happy with me and said I should get the picc line removed. I even got a hand shake!
After the appointment, I booked my slot to get the picc removed next day.
It was so nice to have the picc line removed, my arm feels a less cumbersome now. One of the lovely nurses who dealt with me on the ward when I had my nightmare blockage (see chemotherapy #4 post for more details) took out my line. It was an odd feeling but didn't hurt at all, just a weird pulling sensation. It was out within two minutes.
Lovely nurse B was in that day and we had a big hug. This is when I burst into tears in the middle of the busy day unit. It felt like a weird mixture of relief that my entire treatment - ten months of it including my surgery and recovery from that, was at an end. It was also the feeling of sadness to say goodbye to all the lovely nurses who'd looked after me so beautifully throughout.
With all due respect to them, I never want to see them in a professional sense again. Of course, this doesn't include my sister in law!
It hasn't all been about post chemo annoyances and hospitals though. I've been working on building my strength back up. Going out in the fresh air, taking short walks and doing some online retail therapy. I was lucky enough to have a girly day out last Thursday. It was the best day I've had for a very long time. It involved a few drinks, my make up being done then spending a lot of money on said makeup. Laughs, lovely lunch, manicure and a cocktail at the end of the day. It was lovely to feel normal and less hospitally (I'm making up words again, but you know what I mean.) Thanks ladies for making it such a fabulous day!
The beginning of lots more lovely times ahead.
So that's what's happened after chemo. I have my CT scan on Wednesday. I've been trying to keep it at the back of my mind, I'll have to wait a month for my results. I have an appointment with Dr B booked to have the big reveal on November 26th at 2pm. Please keep all your fingers, toes and eyes crossed for another big fat all clear for me.
Whatever the outcome, I'll post an update about it.
A massive thank you to ALL who have read, supported, shared and commented on my blog. It's really kept me going through this rather difficult year. You're all treasures.
Hayley x
I had an over night admission when my last 5FU pump was removed due to a tight feeling in my chest. I had three ECG's, all fine there. The doctor whom dealt with me seemed to think it was the 5FU giving me a last kick before it was disconnected by irritating the arteries around my heart. Apparently this is a less common side effect of this chemo. Nice!
The doctor thought it best to keep me in overnight for monitoring as I was given a tablet to ease the tight chest (can't remember the name of it) - side effects of the tablet included a lowering of blood pressure. Mine is already low, runs at about 90/60 so he didn't want me flaking out at home. This tablet worked wonders, I only had to take half of it! I have to thank my sister in law who is an oncology and haematology nurse on the day unit, for running around the hospital on behalf of the doctor who'd prescribed it...for an hour to get this drug for me, so thank you J. You little star xx
I was given bail the next morning, felt very tired but a lot better. Home was my destination.
A week later came problem(s) number two. I had three 'owwwies' this time in the form of a lump in my arm pit, a massive spot on my face and the site of my picc line being sore.
Attractive.
Being the good patient I am, I didn't want to sit on these problems so another visit to the hospital it was for me. It may sound stupid to a fit person to go into hospital for these issues but I didn't know if I was Neutropenic at the time. The last thing I wanted was to have a bad infection that meant more hospital time.
I'm glad I went in. To be fair, it was actually Paul who'd insisted I get these problems checked out. My biggest concern was the lump under my arm, there was a small hard nodule, smaller than a pea and it was quite painful when I moved my arm. Dark thoughts crept into my mind and I immediately jumped to the conclusion that it was either a) a bowel cancer reoccurrence in my lymph node or b) a primary breast cancer lump.
- Naughty - *slaps own face*
It turned out to be none of these things. It was a blocked sweat gland (eww) and it disappeared within a couple of days.
Lump on my face. This turned out to be an infected spot. Chemo had made my skin regress to my fourteen year old self. I'm not exaggerating when I say this thing had a pulse of its own.
In fact, here's a picture of it:
It was incredibly red and angry. Another one of those strange things that would normally be an embarrassment but for someone who is immune suppressed, potentially a dangerous situation. I'd urge anyone who is on chemo to get these little niggles checked before they get out of hand. As a result of that spot, I was given ten days worth of antibiotics!
Third problem was the picc line. It felt quite sore and irritated at the entry site. The doctor took a look, he didn't seem concerned and said I'd probably just knocked it. Nothing else was done about that.
Happily, no hospital stay was required as my bloods were at an acceptable level to fight infection. Very pleased about that!
Fast forward a few days and I had my post chemo meeting with Dr B, my oncologist. My bloods were checked again in case I needed a blood transfusion, I didn't. My Hb was at 9.4 which has increased since my last chemo so he was happy for my body to do the work. I'm anaemic but not enough to cause any concern so I've been on a leafy green vegetable health drive to boost my iron count. I don't eat red meat which is the best source of iron apparently. Dr B suggested I eat liver....erm, no way!!!
Apart from that, Dr B seemed happy with me and said I should get the picc line removed. I even got a hand shake!
After the appointment, I booked my slot to get the picc removed next day.
It was so nice to have the picc line removed, my arm feels a less cumbersome now. One of the lovely nurses who dealt with me on the ward when I had my nightmare blockage (see chemotherapy #4 post for more details) took out my line. It was an odd feeling but didn't hurt at all, just a weird pulling sensation. It was out within two minutes.
Lovely nurse B was in that day and we had a big hug. This is when I burst into tears in the middle of the busy day unit. It felt like a weird mixture of relief that my entire treatment - ten months of it including my surgery and recovery from that, was at an end. It was also the feeling of sadness to say goodbye to all the lovely nurses who'd looked after me so beautifully throughout.
With all due respect to them, I never want to see them in a professional sense again. Of course, this doesn't include my sister in law!
It hasn't all been about post chemo annoyances and hospitals though. I've been working on building my strength back up. Going out in the fresh air, taking short walks and doing some online retail therapy. I was lucky enough to have a girly day out last Thursday. It was the best day I've had for a very long time. It involved a few drinks, my make up being done then spending a lot of money on said makeup. Laughs, lovely lunch, manicure and a cocktail at the end of the day. It was lovely to feel normal and less hospitally (I'm making up words again, but you know what I mean.) Thanks ladies for making it such a fabulous day!
The beginning of lots more lovely times ahead.
So that's what's happened after chemo. I have my CT scan on Wednesday. I've been trying to keep it at the back of my mind, I'll have to wait a month for my results. I have an appointment with Dr B booked to have the big reveal on November 26th at 2pm. Please keep all your fingers, toes and eyes crossed for another big fat all clear for me.
Whatever the outcome, I'll post an update about it.
A massive thank you to ALL who have read, supported, shared and commented on my blog. It's really kept me going through this rather difficult year. You're all treasures.
Hayley x
Wednesday 3 October 2012
Chemotherapy #12
Well here it is, my last dose of poison is still coursing through my veins, but at 4.30pm tomorrow - my last 5FU pump will be removed!
I hope with all the will in the world, that this will my last ever session of chemotherapy.
I started my journey with bowel cancer in December last year. A week before my operation to remove the tumour, I looked like this:
Depressed, sad and unbeknownst to me - incredibly poorly. It saddens me to look at this. It brings back a lot of painful feelings. I think it's important to look upon it and know how far I've come.
I looked like this yesterday:
Tired, but happy. I know which one I prefer!
I feel a little bit in limbo. I am of course, thrilled that the treatment is done. I'll no longer have a second home in Queen Alexandra hospital in Portsmouth and I will start to feel stronger with each passing week. The next big thing to look forward to is the removal of my picc line. A lot of people have it removed as soon as treatment is done, but I'm keeping it in for two weeks longer. Two reasons for this; I had a hospital admission during my treatment, so just in case I do need to be admitted for anything, my picc can be used and no one need brutalise my non existent veins to get a cannula in. Second reason, word on the street is that I may need a second blood transfusion due to anaemia. By no means a bad thing for me, I'll feel super perky afterwards.
Truth is, my bloods were at the bottom of the barrel on this chemo, I am Neutropenic but not dangerously so. I needed to make a score of 1 for chemo, I was 1.2 (eeek). I only *just* made it, on time. This was all I could have asked for.
On 24th October, I'll be having my first post treatment CT scan. Last time I had one in May, it was clear, I hope that I can make it a second clear result. I won't find out until 4 weeks after - I may have no finger nails left but I'm remaining positive that it will be clear.
I'm no way near out of the woods yet. My journey will continue for the rest of my life, hoping it will be a very long one.
I will celebrate with caution once I know the results of my scan. My task now is to look after myself, feel better and enjoy my life.
Life is a beautiful gift and I am so grateful I have it.
With tears in my eyes I thank my husband, my family and all my friends - old and new for all the love, support and generally putting up with me through this difficult time in my life. I will always need you in my life.
Thank you Autumn, I love you everyday more and more. I know you continue to protect me. My beautiful sweet girl. I carry you with me always.
This isn't quite the end of me writing on this blog. I'll be back with results and anything else I feel like boring you with. Until then, I may just hibernate for a few days!
Hayley x
I hope with all the will in the world, that this will my last ever session of chemotherapy.
I started my journey with bowel cancer in December last year. A week before my operation to remove the tumour, I looked like this:
Depressed, sad and unbeknownst to me - incredibly poorly. It saddens me to look at this. It brings back a lot of painful feelings. I think it's important to look upon it and know how far I've come.
I looked like this yesterday:
Tired, but happy. I know which one I prefer!
I feel a little bit in limbo. I am of course, thrilled that the treatment is done. I'll no longer have a second home in Queen Alexandra hospital in Portsmouth and I will start to feel stronger with each passing week. The next big thing to look forward to is the removal of my picc line. A lot of people have it removed as soon as treatment is done, but I'm keeping it in for two weeks longer. Two reasons for this; I had a hospital admission during my treatment, so just in case I do need to be admitted for anything, my picc can be used and no one need brutalise my non existent veins to get a cannula in. Second reason, word on the street is that I may need a second blood transfusion due to anaemia. By no means a bad thing for me, I'll feel super perky afterwards.
Truth is, my bloods were at the bottom of the barrel on this chemo, I am Neutropenic but not dangerously so. I needed to make a score of 1 for chemo, I was 1.2 (eeek). I only *just* made it, on time. This was all I could have asked for.
On 24th October, I'll be having my first post treatment CT scan. Last time I had one in May, it was clear, I hope that I can make it a second clear result. I won't find out until 4 weeks after - I may have no finger nails left but I'm remaining positive that it will be clear.
I'm no way near out of the woods yet. My journey will continue for the rest of my life, hoping it will be a very long one.
I will celebrate with caution once I know the results of my scan. My task now is to look after myself, feel better and enjoy my life.
Life is a beautiful gift and I am so grateful I have it.
With tears in my eyes I thank my husband, my family and all my friends - old and new for all the love, support and generally putting up with me through this difficult time in my life. I will always need you in my life.
Thank you Autumn, I love you everyday more and more. I know you continue to protect me. My beautiful sweet girl. I carry you with me always.
This isn't quite the end of me writing on this blog. I'll be back with results and anything else I feel like boring you with. Until then, I may just hibernate for a few days!
Hayley x
Thursday 20 September 2012
Chemotherapy #11
Penultimate chemo. Done.
Well almost, I still have the 5FU pump attached until today until 4.30pm.
I feel like I'm being held together with cello tape and string, by that I mean that I'm having to rely on more meds and heating devices such as hot water bottles and a warm neck cushion to help me through the side effects. I think I'm coming down with a sniffle too.
Colds don't usually get me down but my bloods are starting to get knocked down with each cycle. Again, it's not really a problem unless I get some kind of chest infection which I've been prone to in the past. This would mean a stay at the hospital with IV antibiotics and isolation. I'm doing my utmost to dose up on vitamin C, keep drinking lots of water and lots of rest. No way am I'm letting this compromise my last dose of chemo!
My meeting with Dr B was fairly positive this time. I've learnt to smile sweetly and only bring up the essential details with him. He took a look at the lump in my tummy that was infected from a clexane injection, that's all good now. I had an insect bit on my leg over the weekend too, he took a look at that and didn't seem worried about it. No infection there either...phew, no more antibiotics for that.
We talked about my post treatment CT scan to see whether I'm still clear. It's booked for October 24th, day before my birthday. I've got to be honest, I'm terrified. I want nothing more in my life than for that scan to be clear, to set the benchmark for things to come. Then their is the week to fortnight wait to discuss the results, I can predict a few sleepless nights ahead.
Just a small plug to end this post for my friend Dan.
Dan completed the 3 Peaks challenge (Ben Nevis, Scafell Pike and Snowdon) within 23 hours and 45 minutes. It was an incredible achievement and left him
very sore afterwards! Dan did this to raise money and awareness for my two favourite charities - Bowel Cancer UK and Beating Bowel Cancer. We hope that it's also raised further awareness for younger patients. Thank you to everyone who's sponsored, we're incredibly grateful. If you'd like to sponsor, you can at http://uk.virginmoneygiving.com/DanOsmond - thank you Dan xx
Special thanks to Alice and Pete who were designated drivers and also the rest of the walkers who were doing their bit for charity xx
Next time I post will be after my last chemo!
Hayley xx
Well almost, I still have the 5FU pump attached until today until 4.30pm.
I feel like I'm being held together with cello tape and string, by that I mean that I'm having to rely on more meds and heating devices such as hot water bottles and a warm neck cushion to help me through the side effects. I think I'm coming down with a sniffle too.
Colds don't usually get me down but my bloods are starting to get knocked down with each cycle. Again, it's not really a problem unless I get some kind of chest infection which I've been prone to in the past. This would mean a stay at the hospital with IV antibiotics and isolation. I'm doing my utmost to dose up on vitamin C, keep drinking lots of water and lots of rest. No way am I'm letting this compromise my last dose of chemo!
My meeting with Dr B was fairly positive this time. I've learnt to smile sweetly and only bring up the essential details with him. He took a look at the lump in my tummy that was infected from a clexane injection, that's all good now. I had an insect bit on my leg over the weekend too, he took a look at that and didn't seem worried about it. No infection there either...phew, no more antibiotics for that.
We talked about my post treatment CT scan to see whether I'm still clear. It's booked for October 24th, day before my birthday. I've got to be honest, I'm terrified. I want nothing more in my life than for that scan to be clear, to set the benchmark for things to come. Then their is the week to fortnight wait to discuss the results, I can predict a few sleepless nights ahead.
Just a small plug to end this post for my friend Dan.
Dan completed the 3 Peaks challenge (Ben Nevis, Scafell Pike and Snowdon) within 23 hours and 45 minutes. It was an incredible achievement and left him
very sore afterwards! Dan did this to raise money and awareness for my two favourite charities - Bowel Cancer UK and Beating Bowel Cancer. We hope that it's also raised further awareness for younger patients. Thank you to everyone who's sponsored, we're incredibly grateful. If you'd like to sponsor, you can at http://uk.virginmoneygiving.com/DanOsmond - thank you Dan xx
Special thanks to Alice and Pete who were designated drivers and also the rest of the walkers who were doing their bit for charity xx
Next time I post will be after my last chemo!
Hayley xx
Thursday 6 September 2012
Chemotherapy #10
I had a feeling this one wouldn't be so straight forward.
I don't know what it is, just had a inkling that it wouldn't go as smoothly as I'd like. Not that it was a total disaster, it wasn't; just a couple of annoyances.
It started when I went to see Dr B, my oncologist on Monday 3rd. People will probably know that although he is an excellent oncologist, he has the bedside manner of Frankie Boyle (perhaps a little harsh, but he was the first person who popped into my head.)
I was a little luckier this time with him, he had a student nurse shadowing, so he had to behave himself. Paul and I sat down and I gave my permission to allow the student nurse to sit in on my appointment.
We went through how my symptoms were from chemo #9, he was very thorough and jocular - all a lovely show for the student nurse. At least I didn't get called a reject / get told AGAIN how young I am to be a bowel cancer patient / how he can't promise it won't come back. It was all rather positive! Dr B even said that he WOULDN'T see me again once my treatment is done (I'll be referred back to the surgical tram for all follow up scans.)
So far, so good.
I asked Dr B to take a look at my tummy. I hopped onto the bed, lifted my top up and he had a look. I have a lump just under my skin, to the left of my belly button. It's right in the war zone that is the radiated section of my abdomen. It was sore, red and hot - the cause - Clexane injection. It's infected! I got away with seven months of no problems with these injections, but now my tummy is starting to rebel. It's so tough and lumpy now, it's hard to know where to inject without causing more lumpage (is that even a word?)
Dr B pinched the lump, which was already quite sore and confirmed that I'd have to go on a weeks course of antibiotics (Flucloxacillin) to knock the infection on its head. Dr B said he didn't want it turning into an abscess - eeek! He also gave me the option to defer the chemo for another week, I politely declined (!) he agreed only on the condition that if my lump got worse or my temperature spiked to call the hospital straight away. I agreed to this, I have a happy end date in my head and I'm trying desperately to not have anything get in the way to allow me to finish then.
Sorted. On antibiotics, chemo ready to go for Tuesday 4th.
My appointment for chemo was at 9.30, we waited for a little while until the head Sister in charge of the day unit came over to us to tell me that my bloods were lost from the previous day. The Sister wasn't happy about this, she'd taken my bloods the previous day and ensured they'd got sent to the lab. The bloods were lost somewhere there. I was hurried through to the area where bloods are taken and I was assured by the Sister that my bloods would be ready within the hour.
Paul and I decided to go to the Macmillan centre down the corridor to wait, have a cuppa and a few biscuits. The hour passed quickly and we made our way back to the day unit, my bloods were good so my chemo was a go!
It's weird to be happy to have chemo, I like that I'm in double figures now. I know that four weeks today, I'll be disconnected from my last 5FU pump.
Pre meds started as usual; dexamethasone, hydro cortisone, antihistamines, Emend and Ondansetron and I felt very drowsy as usual. The antihistamines get me every time, I dozed off for about an hour, noticing that during my slumber my mouth kept falling open, lovely sight for all the other patients. At least I didn't snore.
Chemo finished and we made our way home, I hit the sofa immediately and stayed there until bedtime. I can really understand when people describe the side effects as cumulative; the fatigue is immense. My brain whirs with all kinds of thoughts of things I want to do, but my body tells me - absolutely no way. I'm learning to just let it all flow over me (as frustrating as that can be) and rest. Rest is so important.
That evening I learned of the sad news that a fellow bowel cancer patient that I had lovely chats with on Twitter had passed away recently of this awful condition. It really hit me hard that night, he was a lovely chap - gave me kind words of encouragement when I was first diagnosed. We exchanged, gentle and humorous grumbles about our treatment as well as what helped us to cope with chemo side effects. A very kind soul, I'll miss our chats.
Where ever you are, Keith - you remained graceful throughout the difficulties that were thrown at you.
Rest in peace x
Hayley x
I don't know what it is, just had a inkling that it wouldn't go as smoothly as I'd like. Not that it was a total disaster, it wasn't; just a couple of annoyances.
It started when I went to see Dr B, my oncologist on Monday 3rd. People will probably know that although he is an excellent oncologist, he has the bedside manner of Frankie Boyle (perhaps a little harsh, but he was the first person who popped into my head.)
I was a little luckier this time with him, he had a student nurse shadowing, so he had to behave himself. Paul and I sat down and I gave my permission to allow the student nurse to sit in on my appointment.
We went through how my symptoms were from chemo #9, he was very thorough and jocular - all a lovely show for the student nurse. At least I didn't get called a reject / get told AGAIN how young I am to be a bowel cancer patient / how he can't promise it won't come back. It was all rather positive! Dr B even said that he WOULDN'T see me again once my treatment is done (I'll be referred back to the surgical tram for all follow up scans.)
So far, so good.
I asked Dr B to take a look at my tummy. I hopped onto the bed, lifted my top up and he had a look. I have a lump just under my skin, to the left of my belly button. It's right in the war zone that is the radiated section of my abdomen. It was sore, red and hot - the cause - Clexane injection. It's infected! I got away with seven months of no problems with these injections, but now my tummy is starting to rebel. It's so tough and lumpy now, it's hard to know where to inject without causing more lumpage (is that even a word?)
Dr B pinched the lump, which was already quite sore and confirmed that I'd have to go on a weeks course of antibiotics (Flucloxacillin) to knock the infection on its head. Dr B said he didn't want it turning into an abscess - eeek! He also gave me the option to defer the chemo for another week, I politely declined (!) he agreed only on the condition that if my lump got worse or my temperature spiked to call the hospital straight away. I agreed to this, I have a happy end date in my head and I'm trying desperately to not have anything get in the way to allow me to finish then.
Sorted. On antibiotics, chemo ready to go for Tuesday 4th.
My appointment for chemo was at 9.30, we waited for a little while until the head Sister in charge of the day unit came over to us to tell me that my bloods were lost from the previous day. The Sister wasn't happy about this, she'd taken my bloods the previous day and ensured they'd got sent to the lab. The bloods were lost somewhere there. I was hurried through to the area where bloods are taken and I was assured by the Sister that my bloods would be ready within the hour.
Paul and I decided to go to the Macmillan centre down the corridor to wait, have a cuppa and a few biscuits. The hour passed quickly and we made our way back to the day unit, my bloods were good so my chemo was a go!
It's weird to be happy to have chemo, I like that I'm in double figures now. I know that four weeks today, I'll be disconnected from my last 5FU pump.
Pre meds started as usual; dexamethasone, hydro cortisone, antihistamines, Emend and Ondansetron and I felt very drowsy as usual. The antihistamines get me every time, I dozed off for about an hour, noticing that during my slumber my mouth kept falling open, lovely sight for all the other patients. At least I didn't snore.
Chemo finished and we made our way home, I hit the sofa immediately and stayed there until bedtime. I can really understand when people describe the side effects as cumulative; the fatigue is immense. My brain whirs with all kinds of thoughts of things I want to do, but my body tells me - absolutely no way. I'm learning to just let it all flow over me (as frustrating as that can be) and rest. Rest is so important.
That evening I learned of the sad news that a fellow bowel cancer patient that I had lovely chats with on Twitter had passed away recently of this awful condition. It really hit me hard that night, he was a lovely chap - gave me kind words of encouragement when I was first diagnosed. We exchanged, gentle and humorous grumbles about our treatment as well as what helped us to cope with chemo side effects. A very kind soul, I'll miss our chats.
Where ever you are, Keith - you remained graceful throughout the difficulties that were thrown at you.
Rest in peace x
Hayley x
Wednesday 29 August 2012
Things I want to do and will do!
I'm in serious countdown mode until treatment finishes. Including today, it's 37 days until my last pump is removed and I will be chemo forever (fingers very much crossed.) I have to fit three more sessions in that time, I'm starting to find it a little more difficult each time to shake the side effects, but that's to be expected with the cumulation of chemo in my system. I keep the mantra ~this is not forever, this feeling is transient~ going around in my noggin. Hard sometimes when I'm feeling green around the gills, but I do try!
Things that help me through the nausea, pain and neuropathy are that the following things are going to happen before Christmas;
A make up day in London with Bryony and Alice (most probably a couple of glasses of bubbly thrown in for good measure.)
A spa day with Jo and Veri, us girls really need this.
A trip up to Yorkshire to stay with Emma, we'll also be planning our road trip next year to the west coast of the USA.
A getaway for just me and Paul.
Cooking many dinners for friends and family, getting back to one of the most pleasurable of things for me to do.
Setting up a new blog, it'll most likely feature food, recipes and pictures of what I like to cook and bake.
Meet new friends I've made through this journey. Cancer has few benefits, but I've had the fortune to get to know many very wonderful people also affected by this disease. It's truly a humbling experience and I'm very much looking forward to meeting these people in real life.
Volunteer work for various charities, I want to give back and support people who have been affected by cancer.
RETURN TO WORK (before this year is out - again, fingers crossed!!!) I'm itching to get back.
So, quite a busy three months leading up to Christmas. I feel like a new lease of life is heading my way and I'm going to grasp it with both hands and treasure every minute of it!
Hayley x
Things that help me through the nausea, pain and neuropathy are that the following things are going to happen before Christmas;
A make up day in London with Bryony and Alice (most probably a couple of glasses of bubbly thrown in for good measure.)
A spa day with Jo and Veri, us girls really need this.
A trip up to Yorkshire to stay with Emma, we'll also be planning our road trip next year to the west coast of the USA.
A getaway for just me and Paul.
Cooking many dinners for friends and family, getting back to one of the most pleasurable of things for me to do.
Setting up a new blog, it'll most likely feature food, recipes and pictures of what I like to cook and bake.
Meet new friends I've made through this journey. Cancer has few benefits, but I've had the fortune to get to know many very wonderful people also affected by this disease. It's truly a humbling experience and I'm very much looking forward to meeting these people in real life.
Volunteer work for various charities, I want to give back and support people who have been affected by cancer.
RETURN TO WORK (before this year is out - again, fingers crossed!!!) I'm itching to get back.
So, quite a busy three months leading up to Christmas. I feel like a new lease of life is heading my way and I'm going to grasp it with both hands and treasure every minute of it!
Hayley x
Friday 24 August 2012
Chemotherapy #9
I'm 3/4 of the way through chemo! Nine down, three more to go, it's a good feeling!
So how did it go this time? Well, it wasn't quite a smooth sailing as the previous two cycles but nothing too bad at all.
The chemo day was fine, no waiting around and sat in a private room. Got home and things were pretty standard for after chemo; incredibly tired and lots of tingly sensations. Later on in the evening I started to feel more nauseous than usual. I've been coping with nausea much better since taking Emend - however I was a little unwell Tuesday night. I took some Cyclizine and Levomepromazine quell that uncomfortable feeling.
Paul stayed awake until I feel asleep at around 3am, to make sure I was ok, bless him! I woke up periodically to take my usual antihistamine and paracetamol to prevent any reaction to the chemo and it all worked out to be an ok night.
Fast forward to Thursday 4pm which would have been 47 hours since my 5FU pump was attached. I like to give it a little extra than the required 46 hours, just to make sure I get every last drop of that "liquid gold." Unfortunately, the pump was on the go slow for this infusion. It hadn't finished in 46 hours, my picc line had a slight kink in it. Dammit, another night with the pump attached! The nurse moved my line so it now runs straight up my arm and the chemo pump was back in working order. I reckon it finished around 10 hours later than it should have. I wonder what Dr B will have to say about that? I'm sure he'll find some way to tell me off!
To be honest, I should have noticed this kink in my line when I was having the Oxaliplatin infusion on Tuesday. Everytime I bent my arm there was an occlusion in the line which stopped the chemo being pumped through. This meant that Nurse S had to keep coming in everytime it beeped to start it up again. Nevermind, the pump has been disconnected now and I can look forward to 11 days of freedom.
It was a sad day yesterday. It was a year since we said goodbye to Autumn. Paul and I wanted to go to where she rests, a beautiful part of The South Downs in a corner of a very peaceful forest. It's quite a walk whilst the chemo is still coursing through my body, but I'm so glad that I got to talk to her. I talk to her all the time, but standing there, where life is so abundant due to her energy is such beautiful poetry to me.
Autumn continues to give so much even though she's been gone a year. Amazing.
Hayley x
So how did it go this time? Well, it wasn't quite a smooth sailing as the previous two cycles but nothing too bad at all.
The chemo day was fine, no waiting around and sat in a private room. Got home and things were pretty standard for after chemo; incredibly tired and lots of tingly sensations. Later on in the evening I started to feel more nauseous than usual. I've been coping with nausea much better since taking Emend - however I was a little unwell Tuesday night. I took some Cyclizine and Levomepromazine quell that uncomfortable feeling.
Paul stayed awake until I feel asleep at around 3am, to make sure I was ok, bless him! I woke up periodically to take my usual antihistamine and paracetamol to prevent any reaction to the chemo and it all worked out to be an ok night.
Fast forward to Thursday 4pm which would have been 47 hours since my 5FU pump was attached. I like to give it a little extra than the required 46 hours, just to make sure I get every last drop of that "liquid gold." Unfortunately, the pump was on the go slow for this infusion. It hadn't finished in 46 hours, my picc line had a slight kink in it. Dammit, another night with the pump attached! The nurse moved my line so it now runs straight up my arm and the chemo pump was back in working order. I reckon it finished around 10 hours later than it should have. I wonder what Dr B will have to say about that? I'm sure he'll find some way to tell me off!
To be honest, I should have noticed this kink in my line when I was having the Oxaliplatin infusion on Tuesday. Everytime I bent my arm there was an occlusion in the line which stopped the chemo being pumped through. This meant that Nurse S had to keep coming in everytime it beeped to start it up again. Nevermind, the pump has been disconnected now and I can look forward to 11 days of freedom.
It was a sad day yesterday. It was a year since we said goodbye to Autumn. Paul and I wanted to go to where she rests, a beautiful part of The South Downs in a corner of a very peaceful forest. It's quite a walk whilst the chemo is still coursing through my body, but I'm so glad that I got to talk to her. I talk to her all the time, but standing there, where life is so abundant due to her energy is such beautiful poetry to me.
Autumn continues to give so much even though she's been gone a year. Amazing.
Hayley x
Sunday 19 August 2012
My heart
It's been a year since I held you. My precious little girl; you're my waking thought and my evening solace. I still remember how warm you felt, how you smell and the tiny cries when you were being brave having needles and lines stuck in you.
My heart is still broken, you never came home but I was at home when I was with you. You were only tiny, but you had a massive spirit. I could see your personality when I looked in your beautiful blue eyes. You had your Daddy's eyes and my fingers and toes.
I have so many happy memories of you, the first time I saw you, the first time I held you, the first time you looked at me, the first time you held my hand with that tight grip. We did your cares, I got to wash your face, change your nappy and arrange your bedding.
You had two major operations on your tummy, first one was a success. Within 2 weeks you were being weened onto my milk, millileter at a time you were getting stronger. The doctors and surgeons were so impressed with you, such a clever little girl. Your lungs were so strong, you could breathe on your own for 20 minutes at a time. I'll never forget your face. Such a beautiful, perfectly formed and tiny face. Without all the breathing apparatus, we got to see you. You were just amazing.
I'll never forget the day when I couldn't leave you. I knew you weren't happy. I knew you were in pain. I knew I could do nothing to stop it. I held your tiny hand, I watched you cry. I hurt everytime tiny tears rolled down your face. I knew that it wasn't right. We left for an hour and the call came. It was the nurse telling us we should come back to see you. We raced back as fast as we could, you were hooked up to more machines and you were lying still. No longer the CPAP machine, but on the ventilator. The doctor said it wasn't good. The big tall surgeon came by to tell us that he wanted to see how you progressed overnight, he didn't want to have to open up your tummy too soon. I sat one side of you and daddy the otherside, we both held your hands. We both willed you to get better.
We stayed next door to you all night, whilst the lovely surgeon, doctors and nurses monitored you. Your breathing started to stabilise, but you were everso poorly. Mr W, the surgeon told me and your daddy he'd have to operate in the morning. We signed the scary consent forms to allow him to go ahead.
We waited, it was agonising. We waited some more. We paced the room, the clock seemed to standstill.
An hour and a half later, we could see the surgeon, doctor and nurses coming towards our room. Mr W, the doctor and nursed came in, we sat down. We were told that you wouldn't be with us for long. I've never known what it's like to have my heart taken away from me, but I did from that moment. I wanted to rip the walls down, I wanted to scream. I cried, I was sick. This couldn't be happening to you. We are supposed to protect you, we are supposed to see you grow up, speak your first words, take your first steps, encourage you on your first day of school. Your dad would comfort you when a boy broke your heart and I would cry when you looked so beautiful on your wedding day.
We took you into our room next door and we sat with you. Slowly, all the equipment was taken away and we were left with you. Just me, daddy and you. It wasn't supposed to be this way. Daddy and I took it in turns to cuddle you, you were so warm all wrapped up in the blanket. Your eyes were open, but they started to close. The nurse came in and listened to your heart; "she's still here," she said, then she left us. You were still with me and daddy, you were such a little fighter. I kissed your head, with soft beautiful light red hair. We didn't want to let you go. I've never felt pain like this, your life was slipping away in our arms and we couldn't help you. The nurse listened again, "she's still here," you were sleeping now, the nurse left us again. Your eyes were closed and you looked so peaceful. We talked to you, we told you we loved you, how proud we were of you. We didn't want you to be on your own in this journey, we wanted you to hear our voices until you fell alsleep.
Nurse E came back and listened to your heart. "She's gone to sleep now." Our beautiful baby girl, you were at peace now. No more scary operations, no more needles, cannulas, blood pressure sleeves, test after test, after test. You were free now. We held onto you, crying like we could never, ever stop. Our hearts are broken and nothing will fix them. The nice doctor came in and made it official, that Autumn Selina Charlotte Hovey, the little girl with the big name, was gone. I told the doctor that I couldn't let you go on anymore in pain, I couldn't see you wired up to those machines anymore. The nice doctor said I was thinking like a mummy.
I thought I would die from the pain I felt, but I haven't. I suffer day in and day out knowing that I watched your life slip away in our arms. I try to think about the all the lovely times we had together, but the dark cloud of that day spoils my thoughts. We can't and never will get over losing you, no parent should outlive their children.
I've been missing you so much the past week or so, we just had your birthday and we're coming up to that horrible day when we said goodbye.
I'll always remember you, my sweet girl. You have changed my life forever, I will always love you. Big kiss X
My heart is still broken, you never came home but I was at home when I was with you. You were only tiny, but you had a massive spirit. I could see your personality when I looked in your beautiful blue eyes. You had your Daddy's eyes and my fingers and toes.
I have so many happy memories of you, the first time I saw you, the first time I held you, the first time you looked at me, the first time you held my hand with that tight grip. We did your cares, I got to wash your face, change your nappy and arrange your bedding.
You had two major operations on your tummy, first one was a success. Within 2 weeks you were being weened onto my milk, millileter at a time you were getting stronger. The doctors and surgeons were so impressed with you, such a clever little girl. Your lungs were so strong, you could breathe on your own for 20 minutes at a time. I'll never forget your face. Such a beautiful, perfectly formed and tiny face. Without all the breathing apparatus, we got to see you. You were just amazing.
I'll never forget the day when I couldn't leave you. I knew you weren't happy. I knew you were in pain. I knew I could do nothing to stop it. I held your tiny hand, I watched you cry. I hurt everytime tiny tears rolled down your face. I knew that it wasn't right. We left for an hour and the call came. It was the nurse telling us we should come back to see you. We raced back as fast as we could, you were hooked up to more machines and you were lying still. No longer the CPAP machine, but on the ventilator. The doctor said it wasn't good. The big tall surgeon came by to tell us that he wanted to see how you progressed overnight, he didn't want to have to open up your tummy too soon. I sat one side of you and daddy the otherside, we both held your hands. We both willed you to get better.
We stayed next door to you all night, whilst the lovely surgeon, doctors and nurses monitored you. Your breathing started to stabilise, but you were everso poorly. Mr W, the surgeon told me and your daddy he'd have to operate in the morning. We signed the scary consent forms to allow him to go ahead.
We waited, it was agonising. We waited some more. We paced the room, the clock seemed to standstill.
An hour and a half later, we could see the surgeon, doctor and nurses coming towards our room. Mr W, the doctor and nursed came in, we sat down. We were told that you wouldn't be with us for long. I've never known what it's like to have my heart taken away from me, but I did from that moment. I wanted to rip the walls down, I wanted to scream. I cried, I was sick. This couldn't be happening to you. We are supposed to protect you, we are supposed to see you grow up, speak your first words, take your first steps, encourage you on your first day of school. Your dad would comfort you when a boy broke your heart and I would cry when you looked so beautiful on your wedding day.
We took you into our room next door and we sat with you. Slowly, all the equipment was taken away and we were left with you. Just me, daddy and you. It wasn't supposed to be this way. Daddy and I took it in turns to cuddle you, you were so warm all wrapped up in the blanket. Your eyes were open, but they started to close. The nurse came in and listened to your heart; "she's still here," she said, then she left us. You were still with me and daddy, you were such a little fighter. I kissed your head, with soft beautiful light red hair. We didn't want to let you go. I've never felt pain like this, your life was slipping away in our arms and we couldn't help you. The nurse listened again, "she's still here," you were sleeping now, the nurse left us again. Your eyes were closed and you looked so peaceful. We talked to you, we told you we loved you, how proud we were of you. We didn't want you to be on your own in this journey, we wanted you to hear our voices until you fell alsleep.
Nurse E came back and listened to your heart. "She's gone to sleep now." Our beautiful baby girl, you were at peace now. No more scary operations, no more needles, cannulas, blood pressure sleeves, test after test, after test. You were free now. We held onto you, crying like we could never, ever stop. Our hearts are broken and nothing will fix them. The nice doctor came in and made it official, that Autumn Selina Charlotte Hovey, the little girl with the big name, was gone. I told the doctor that I couldn't let you go on anymore in pain, I couldn't see you wired up to those machines anymore. The nice doctor said I was thinking like a mummy.
I thought I would die from the pain I felt, but I haven't. I suffer day in and day out knowing that I watched your life slip away in our arms. I try to think about the all the lovely times we had together, but the dark cloud of that day spoils my thoughts. We can't and never will get over losing you, no parent should outlive their children.
I've been missing you so much the past week or so, we just had your birthday and we're coming up to that horrible day when we said goodbye.
I'll always remember you, my sweet girl. You have changed my life forever, I will always love you. Big kiss X
Saturday 18 August 2012
Chemotherapy #8
As far as side effects go, this cycle of chemo may rank as the easiest so far.
I've mostly dealt with nausea the week after the infusion and some abdominal pain, but I was able to contain these fairly successfully with a combination of Cyclizine and slow release morphine. The combination of these two drugs should have sent me into a slumbering state, instead I've had the complete opposite. I've been suffering with insomnia, I can normally drop off to sleep at the drop of a hat, however I've been waking up at around 2.30 am a few times and unable to go back to sleep.
I have so many thoughts going through my head and in the dead of night, it seems almost impossible to forget them and count sheep.
Thoughts of my future. I'm excited, but also a little scared. Believe me, the sooner I can finish this treatment the better. The flip side to that is that without treatment, without the bi-weekly monitoring and blood tests - I'm on my own as far as medicine is concerned for six months at a time. I'll no idea what's going on in my body. I'll be relying on T cells to ensure nothing comes back. Cancer can be sneaky. It can bloom and flourish without us even knowing about it. Many symptoms (especially small reoccurrences) will not present themselves and are only detected with CT scans, which I'll be having every six months.
I've only discovered recently that I ticked a box at the beginning of my treatment (yeah, great reading of the small print there) to take part in the SCOT trial. As well as this being of benefit for future bowel cancer patients, it means I get monitored that little more cloesly over the next seven years rather than five. More frequent CT scans and blood tests means that *if* anything were to rear its ugly head, it can be knocked on his ugly head in a swift fashion.
I can really see the end of the tunnel now. Next Thursday will mark my six week countdown until my last 5FU pump is removed, if I put it that way it seems like no time at all!
We're starting to plan for life after treatment. Celebrating Christmas this year will be nice, a big holiday next year amongst other big plans we have on the horizon. The rest of our lives are ahead of us and we are extremely grateful.
Hayley x
I've mostly dealt with nausea the week after the infusion and some abdominal pain, but I was able to contain these fairly successfully with a combination of Cyclizine and slow release morphine. The combination of these two drugs should have sent me into a slumbering state, instead I've had the complete opposite. I've been suffering with insomnia, I can normally drop off to sleep at the drop of a hat, however I've been waking up at around 2.30 am a few times and unable to go back to sleep.
I have so many thoughts going through my head and in the dead of night, it seems almost impossible to forget them and count sheep.
Thoughts of my future. I'm excited, but also a little scared. Believe me, the sooner I can finish this treatment the better. The flip side to that is that without treatment, without the bi-weekly monitoring and blood tests - I'm on my own as far as medicine is concerned for six months at a time. I'll no idea what's going on in my body. I'll be relying on T cells to ensure nothing comes back. Cancer can be sneaky. It can bloom and flourish without us even knowing about it. Many symptoms (especially small reoccurrences) will not present themselves and are only detected with CT scans, which I'll be having every six months.
I've only discovered recently that I ticked a box at the beginning of my treatment (yeah, great reading of the small print there) to take part in the SCOT trial. As well as this being of benefit for future bowel cancer patients, it means I get monitored that little more cloesly over the next seven years rather than five. More frequent CT scans and blood tests means that *if* anything were to rear its ugly head, it can be knocked on his ugly head in a swift fashion.
I can really see the end of the tunnel now. Next Thursday will mark my six week countdown until my last 5FU pump is removed, if I put it that way it seems like no time at all!
We're starting to plan for life after treatment. Celebrating Christmas this year will be nice, a big holiday next year amongst other big plans we have on the horizon. The rest of our lives are ahead of us and we are extremely grateful.
Hayley x
Friday 3 August 2012
Chemotherapy #7
I'm wondering why I'm writing a post for this particular chemo. I haven't had any weird side effects, no 4 am visits to the hospitals and I'm feeling fairly well. As well as you can, two days after chemo.
I guess I intended this blog to remind me of each experience through treatment and recovery. If I feel half human, this is a good thing. I believe that we may have cracked it (she whispers, very gingerly). The combination of a mostly liquid diet two days before and two days after chemo, a huge amount of antihistamines and paracetamol to keep the reaction at bay and some rather elaborate (expensive) anti sickness drugs have made the past three chemo experiences the less of the living hell they could have been!
If I can give some advise to anyone going through chemo, ask for the anti sickness drug called Emend (Aprepitent), it's just fabulous. I'm sure NHS oncologists would try and gag me for sharing this information. It's expensive, but it really works. I've also suggested this to a couple of people who had horrendous sickness, they are now a whole lot better for taking this.
Don't get me wrong, Emend aside; I still feel a bit 'icky, lethargic, and the neuropathy and tummy pain has started to make an appearance again, but these are all very manageable. If I can get through the next 5 sessions like this, I'm a happy girl.
I'm even embracing my steroid blush, makes me look less like a cave dweller!
Hayley x
I guess I intended this blog to remind me of each experience through treatment and recovery. If I feel half human, this is a good thing. I believe that we may have cracked it (she whispers, very gingerly). The combination of a mostly liquid diet two days before and two days after chemo, a huge amount of antihistamines and paracetamol to keep the reaction at bay and some rather elaborate (expensive) anti sickness drugs have made the past three chemo experiences the less of the living hell they could have been!
If I can give some advise to anyone going through chemo, ask for the anti sickness drug called Emend (Aprepitent), it's just fabulous. I'm sure NHS oncologists would try and gag me for sharing this information. It's expensive, but it really works. I've also suggested this to a couple of people who had horrendous sickness, they are now a whole lot better for taking this.
Don't get me wrong, Emend aside; I still feel a bit 'icky, lethargic, and the neuropathy and tummy pain has started to make an appearance again, but these are all very manageable. If I can get through the next 5 sessions like this, I'm a happy girl.
I'm even embracing my steroid blush, makes me look less like a cave dweller!
Hayley x
Monday 16 July 2012
The last hurdle(s)
I didn't think I'd get this far, both mentally and physically. When I look back to December 21st last year just after my operation, I was told I would have a very steep mountain to climb. My surgeon, Mr C explained it as follows; surgery = sprint, treatment = marathon. I'm in the last third of the marathon now and I'm edging towards that finishing line. Going for gold! I'm going to stop crow barring as many Olympic analogies into this paragraph as possible now, but you get the picture.
So far in the past year, I've had the following happen to my body:
A caesarian
A 7 hour operation
IVF
6 rounds of chemotherapy
25 sessions of radiotherapy
I'm a bit tuckered out if I'm
honest and that's just the physical side. The emotional part has probably been worse, but I'm getting there. I've (almost) learnt to accept what's happened. Paul and I are a stronger couple because of our unfortunate series of events. This has turned out to be one of the biggest positives in the past year. If we can come through the darkness we've endured the past twelve months; there's absolutely nothing that can break our bond. I'm a very fortunate person to have Paul and I will always thank the day I met him (he'll love this).
So what's next?
I have 6 more sessions of chemotherapy, the last batch of my treatment forever (fingers very much crossed). Chemo number 7 starts next week, 24th July in the afternoon.
July 24th has huge significance for us, it would have been Autumn's 1st birthday. I like to think this is another little message she's sending me. I believe her energy is giving me the energy to push on through. My dear friend Veri (who's a mummy to an awesome little boy) thought the very same way, I guess I'm still thinking like mums do. At least, I hope I am.
We should be celebrating Autumn's 1st birthday and having a party play date with all the other little friends and cousins she should have met but didn't have the chance to. Instead, I'll go to her corner of the forest next Tuesday morning and thank her for protecting me once again. It doesn't seem right that she's looking after me, it should be the other way around. This what I have of her. I grip onto it dearly.
I've promised myself something for the next batch of treatment; it's going to be a hell of a lot less eventful than the last lot! I want to get through it with no middle of the night hospital trips, no more dramas! We're more prepared this time with how chemo affects me so I'm hoping that I can get through it with fewer hiccups.
My magical end date is October 2nd (actually October 4th if you take into consideration the pump removal) so here's to getting the next 3 months out of the way. You'll be hearing ALL about it I'm sure!
Hayley x
So far in the past year, I've had the following happen to my body:
A caesarian
A 7 hour operation
IVF
6 rounds of chemotherapy
25 sessions of radiotherapy
I'm a bit tuckered out if I'm
honest and that's just the physical side. The emotional part has probably been worse, but I'm getting there. I've (almost) learnt to accept what's happened. Paul and I are a stronger couple because of our unfortunate series of events. This has turned out to be one of the biggest positives in the past year. If we can come through the darkness we've endured the past twelve months; there's absolutely nothing that can break our bond. I'm a very fortunate person to have Paul and I will always thank the day I met him (he'll love this).
So what's next?
I have 6 more sessions of chemotherapy, the last batch of my treatment forever (fingers very much crossed). Chemo number 7 starts next week, 24th July in the afternoon.
July 24th has huge significance for us, it would have been Autumn's 1st birthday. I like to think this is another little message she's sending me. I believe her energy is giving me the energy to push on through. My dear friend Veri (who's a mummy to an awesome little boy) thought the very same way, I guess I'm still thinking like mums do. At least, I hope I am.
We should be celebrating Autumn's 1st birthday and having a party play date with all the other little friends and cousins she should have met but didn't have the chance to. Instead, I'll go to her corner of the forest next Tuesday morning and thank her for protecting me once again. It doesn't seem right that she's looking after me, it should be the other way around. This what I have of her. I grip onto it dearly.
I've promised myself something for the next batch of treatment; it's going to be a hell of a lot less eventful than the last lot! I want to get through it with no middle of the night hospital trips, no more dramas! We're more prepared this time with how chemo affects me so I'm hoping that I can get through it with fewer hiccups.
My magical end date is October 2nd (actually October 4th if you take into consideration the pump removal) so here's to getting the next 3 months out of the way. You'll be hearing ALL about it I'm sure!
Hayley x
Tuesday 12 June 2012
Radiotherapy and news on IVF
It's been a while since I've written anything, I've been busy living my life and feeling a little more normal.
The past few weeks have been great. Went to see Wicked in London, eating out loads and seeing friends. It's almost as if I wasn't a cancer patient. I'm looking forward to more of this come November time when I should be finished with treatment.
So, I've had five sessions of radiotherapy already! That's a fifth of the way through my 25 sessions. So far I don't feel too bad, I feel a bit tired by the end of the day but that's to be expected. With this particular treatment it attacks the red blood cells more, hence the tiredness. I'm probably on the road to anaemia again, but nothing that a couple of bags of donated blood can't sort out If needed. I've also had a bit of the dreaded tum pain, I just don't think my tum likes being tampered with - be it chemo or rads, it likes to be left alone and behaves itself when it's left to its own devices!
So what's radiotherapy like? I can only speak for myself, other people may have different experiences.
The whole process takes ten minutes at most. Every week day, I'm led into a giant room and lie on a table under a device that looks like something that wouldn't look out of place in a sci fi movie. The lovely medical staff then position me using the tattoos I had on my lower pelvic to target the radiation in the exact area where my tumour was taken away.
Once I'm in the correct position I have to lie very still whilst the giant whirly disc moves over me making what sounds like a camera zooming in, pointing at my left lower pelvic area. The actual zap takes no more than 2-3 minutes, it's over very quickly. I don't feel a thing whilst I'm being fried, it's basically a little lay down whilst Heart FM blasts Goyte's 'Someone That I Used To Know' from the radio. Proof that their playlist is recycled everyday. I can honestly say that out of the 5 times I've been, it's been on 3 times.
So far so good. I haven't had the immediate and severe side effects that chemo has given me. That's not to say I won't...reading the Macmillan guides regarding radiotherapy, it's possible that side effects won't present themselves for many years. I'll cross that bridge when I get to it!
The other late effect that really does worry me is that I will probably be rendered infertile, particularly after radiotherapy.
We met with the doctor who performed the IVF procedure on me this morning. It was good news in the respect that the embryos that we have stored are in excellent condition. In fact, she said they were the best she'd seen. Go us!!! However, it's not all as easy as popping them back in when we want babies.
Life is never that simple!
Dr I explained that although the embryos have very high chances of working brilliantly, my body may no longer be a suitable place to nurture a baby. My oncologist recommended that no shielding was to be used in my lower pelvic region to give the radiotherapy the best chance of zapping any rogue cancer cells. This means my ovaries and womb are exposed to the radiation, that isn't good! The likelihood of my womb working after the radiotherapy is very low. So potentially, the only option for us to have our own babies is to donate our embryos to a surrogate mother.
I feel like an ungrateful whiner when I say this really hurts me.
We've been lucky enough to get IVF granted in between my surgery and start of treatment - we still have a shot or 9 shots to be exact) at having our own child, but I so desperately wanted to carry our child. I feel bitter about it, I know I shouldn't but I do, that's how it is. I feel that cancer has taken away enough already without this as well.
It becomes a case of hiring lawyers to ensure everything is done above board and at the end of it all, if the surrogate mother wants to keep the baby, she can. Their is nothing we can do to stop that. I know it's not the worst thing that can happen in the grand scheme of life, but I can't help but feel disappointed at the prospect of not being able to carry our baby.
Ok, I'm going to give myself a big slap now. Time to buck up and look forward to the end of all this treatment and finding a surrogate mother ;-)
Hayley x
The past few weeks have been great. Went to see Wicked in London, eating out loads and seeing friends. It's almost as if I wasn't a cancer patient. I'm looking forward to more of this come November time when I should be finished with treatment.
So, I've had five sessions of radiotherapy already! That's a fifth of the way through my 25 sessions. So far I don't feel too bad, I feel a bit tired by the end of the day but that's to be expected. With this particular treatment it attacks the red blood cells more, hence the tiredness. I'm probably on the road to anaemia again, but nothing that a couple of bags of donated blood can't sort out If needed. I've also had a bit of the dreaded tum pain, I just don't think my tum likes being tampered with - be it chemo or rads, it likes to be left alone and behaves itself when it's left to its own devices!
So what's radiotherapy like? I can only speak for myself, other people may have different experiences.
The whole process takes ten minutes at most. Every week day, I'm led into a giant room and lie on a table under a device that looks like something that wouldn't look out of place in a sci fi movie. The lovely medical staff then position me using the tattoos I had on my lower pelvic to target the radiation in the exact area where my tumour was taken away.
Once I'm in the correct position I have to lie very still whilst the giant whirly disc moves over me making what sounds like a camera zooming in, pointing at my left lower pelvic area. The actual zap takes no more than 2-3 minutes, it's over very quickly. I don't feel a thing whilst I'm being fried, it's basically a little lay down whilst Heart FM blasts Goyte's 'Someone That I Used To Know' from the radio. Proof that their playlist is recycled everyday. I can honestly say that out of the 5 times I've been, it's been on 3 times.
So far so good. I haven't had the immediate and severe side effects that chemo has given me. That's not to say I won't...reading the Macmillan guides regarding radiotherapy, it's possible that side effects won't present themselves for many years. I'll cross that bridge when I get to it!
The other late effect that really does worry me is that I will probably be rendered infertile, particularly after radiotherapy.
We met with the doctor who performed the IVF procedure on me this morning. It was good news in the respect that the embryos that we have stored are in excellent condition. In fact, she said they were the best she'd seen. Go us!!! However, it's not all as easy as popping them back in when we want babies.
Life is never that simple!
Dr I explained that although the embryos have very high chances of working brilliantly, my body may no longer be a suitable place to nurture a baby. My oncologist recommended that no shielding was to be used in my lower pelvic region to give the radiotherapy the best chance of zapping any rogue cancer cells. This means my ovaries and womb are exposed to the radiation, that isn't good! The likelihood of my womb working after the radiotherapy is very low. So potentially, the only option for us to have our own babies is to donate our embryos to a surrogate mother.
I feel like an ungrateful whiner when I say this really hurts me.
We've been lucky enough to get IVF granted in between my surgery and start of treatment - we still have a shot or 9 shots to be exact) at having our own child, but I so desperately wanted to carry our child. I feel bitter about it, I know I shouldn't but I do, that's how it is. I feel that cancer has taken away enough already without this as well.
It becomes a case of hiring lawyers to ensure everything is done above board and at the end of it all, if the surrogate mother wants to keep the baby, she can. Their is nothing we can do to stop that. I know it's not the worst thing that can happen in the grand scheme of life, but I can't help but feel disappointed at the prospect of not being able to carry our baby.
Ok, I'm going to give myself a big slap now. Time to buck up and look forward to the end of all this treatment and finding a surrogate mother ;-)
Hayley x
Thursday 17 May 2012
Some thoughts
I'm enjoying my treatment break, but now I'm feeling strong again, I find myself impatient to start radiotherapy, which starts on the 6th of June. Strange, but I just want to push on and get it all done and dusted.
Stomach pains have disappeared, energy levels are rising and appetite had been restored. The only lingering side effect is the neuropathy. It catches me out. Whether it be washing my hands (must remember to run the hot tap for a few seconds), taking stuff out of the fridge / freezer or walking on a cold floor without the benefit of warm socks. It's fairly immediate and vicious, but if is this and the op scars is all I take away from this part of my life, then I'm thankful.
I heard a quote the other day, 'Cancer isn't something I have, but something my body is doing.' I feel like I can relate to this. When I first heard my diagnosis, all I could think of was death. Cancer = death. I was wrong. My diagnosis, although not ideal does not mean I'm going to die from it. I'm currently cancer free and I embrace this wholeheartedly, I know their is a possibility that it can come back but why worry about this when I don't know that it will? We all die, I've been given a glimpse of my own mortality and although it sounds terribly cliched, I appreciate my life even more. It's changed me as a person, I'm not scared - I feel a new confidence.
Until recently, I couldn't see past the treatment - now all I can see is holidays away with Paul, having fun with family and friends (of whom, I have to say are the best a person could wish for) and having our family we have always wished for. I can't think of a better way to celebrate our daughters gift to me than having a little brother or sister (or both) to whom we can share our wonderful story of their big sister, Autumn.
I now realise how very lucky I am. I have an amazing husband, supportive family and friends and many happy memories in the making. I have an awful lot to live for and I fully intend to, for many more years.
Hayley x
Stomach pains have disappeared, energy levels are rising and appetite had been restored. The only lingering side effect is the neuropathy. It catches me out. Whether it be washing my hands (must remember to run the hot tap for a few seconds), taking stuff out of the fridge / freezer or walking on a cold floor without the benefit of warm socks. It's fairly immediate and vicious, but if is this and the op scars is all I take away from this part of my life, then I'm thankful.
I heard a quote the other day, 'Cancer isn't something I have, but something my body is doing.' I feel like I can relate to this. When I first heard my diagnosis, all I could think of was death. Cancer = death. I was wrong. My diagnosis, although not ideal does not mean I'm going to die from it. I'm currently cancer free and I embrace this wholeheartedly, I know their is a possibility that it can come back but why worry about this when I don't know that it will? We all die, I've been given a glimpse of my own mortality and although it sounds terribly cliched, I appreciate my life even more. It's changed me as a person, I'm not scared - I feel a new confidence.
Until recently, I couldn't see past the treatment - now all I can see is holidays away with Paul, having fun with family and friends (of whom, I have to say are the best a person could wish for) and having our family we have always wished for. I can't think of a better way to celebrate our daughters gift to me than having a little brother or sister (or both) to whom we can share our wonderful story of their big sister, Autumn.
I now realise how very lucky I am. I have an amazing husband, supportive family and friends and many happy memories in the making. I have an awful lot to live for and I fully intend to, for many more years.
Hayley x
Sunday 6 May 2012
Chemotherapy #6
Yes!!!!! Half way through chemotherapy! That's right, 50% DONE!
The relief I felt when the 5FU pump was taken down on Friday was immense. I spent 4 nights in hospital. This is 1 night longer than I should have.
Some clever soul had lost my chemotherapy chart from my previous stay on those wards. This meant that the chemo wasn't ordered in on time and wasn't ready on Tuesday when I was due to have it. The oncologist seemed impressed with how healthy my bloods were and I was very keen to get this one out of the way. Bit disappointed I was taking up a hospital bed for no reason. Next day my chemo chart was found and things were back on track.
I'm now in somewhat of a R&R period before I embark on 25 sessions of 5 days a week radiotherapy. I think (but still have to clarify with my Oncologist) that I will be free of treatment for the entirety of May. This will give my body time to get all it's reserves back up ready to be zapped in the area where my tumour was.
The reason I'm having radiotherapy is because a small part of the tumour had attached to my abdominal wall, the surgeon was very confident that he'd removed everything, the margins of healthy tissue are clear - its just a case of frying anything microscopic
that may or may not still be there. As I've mentioned before, I'm having the works thrown at me.
It's now a week since chemo #6 started and I'm still having abdominal pain but this is due to the 5FU chemo really attacking that area and the previous blockage still causing a bit of tenderness. Neuropathy is becoming more of a hindrance - the slightest hint of cold and my fingers and toes feel like they're being stabbed. I normally find a hot water bottle and a thick pair of socks helps. Although these symptoms aren't that pleasant, I'd happily put up with these for the rest of my life for years worth of all clear results!
I'm going to get lots of rest, eat well and try and get out for a little bit of exercise before my next phase of treatment. I want to be the strongest I can be for radiotherapy. Oh and do lots of retail therapy!
Hayley x
The relief I felt when the 5FU pump was taken down on Friday was immense. I spent 4 nights in hospital. This is 1 night longer than I should have.
Some clever soul had lost my chemotherapy chart from my previous stay on those wards. This meant that the chemo wasn't ordered in on time and wasn't ready on Tuesday when I was due to have it. The oncologist seemed impressed with how healthy my bloods were and I was very keen to get this one out of the way. Bit disappointed I was taking up a hospital bed for no reason. Next day my chemo chart was found and things were back on track.
I'm now in somewhat of a R&R period before I embark on 25 sessions of 5 days a week radiotherapy. I think (but still have to clarify with my Oncologist) that I will be free of treatment for the entirety of May. This will give my body time to get all it's reserves back up ready to be zapped in the area where my tumour was.
The reason I'm having radiotherapy is because a small part of the tumour had attached to my abdominal wall, the surgeon was very confident that he'd removed everything, the margins of healthy tissue are clear - its just a case of frying anything microscopic
that may or may not still be there. As I've mentioned before, I'm having the works thrown at me.
It's now a week since chemo #6 started and I'm still having abdominal pain but this is due to the 5FU chemo really attacking that area and the previous blockage still causing a bit of tenderness. Neuropathy is becoming more of a hindrance - the slightest hint of cold and my fingers and toes feel like they're being stabbed. I normally find a hot water bottle and a thick pair of socks helps. Although these symptoms aren't that pleasant, I'd happily put up with these for the rest of my life for years worth of all clear results!
I'm going to get lots of rest, eat well and try and get out for a little bit of exercise before my next phase of treatment. I want to be the strongest I can be for radiotherapy. Oh and do lots of retail therapy!
Hayley x
Wednesday 2 May 2012
Pre chemo #6 update and good news.
I'm sitting here at the pleasure of the good ship Queen Alexandra hospital in Portsmouth waiting for my sixth round of chemotherapy.
It was supposed to be yesterday but some *plum* has lost my chemo chart. Dr B, my Oncologist was furious and went about blaming some nameless people and apologised furiously that I was summoned here earlier than was necessary. Meh, never mind, I've become a fan of hospital food....
The real big news this week from my camp is that the CT scan I had 10 days ago has been reviewed by Dr B and the surgical team. The scan is clear. No evidence of disease. I'm as clean as a whistle and all my organs are behaving themselves.
I am so, so relieved.
I am by no means out of the woods yet. I have 4 1/2 more years of scans and the all clear will be declared if the scan is still clean then. However, I'm very encouraged and this boost couldn't have come sooner. I can say I no longer have cancer, I'm a cancer patient who is being treated to ensure the utter swine never returns.
I've been grinning like a massive pillock the past day. I have more chemo today and will probably feel minging later, but I don't care. All this pain and being utterly sick to the stomach along with all the other side effects have been worth it thus far.
I'm going to enjoy this moment and hold onto it when I'm yakking later.
Update on how chemo #6 coming up soon, then Radiotherapy!
Who says I don't know how to have fun?!?
Hayley x
It was supposed to be yesterday but some *plum* has lost my chemo chart. Dr B, my Oncologist was furious and went about blaming some nameless people and apologised furiously that I was summoned here earlier than was necessary. Meh, never mind, I've become a fan of hospital food....
The real big news this week from my camp is that the CT scan I had 10 days ago has been reviewed by Dr B and the surgical team. The scan is clear. No evidence of disease. I'm as clean as a whistle and all my organs are behaving themselves.
I am so, so relieved.
I am by no means out of the woods yet. I have 4 1/2 more years of scans and the all clear will be declared if the scan is still clean then. However, I'm very encouraged and this boost couldn't have come sooner. I can say I no longer have cancer, I'm a cancer patient who is being treated to ensure the utter swine never returns.
I've been grinning like a massive pillock the past day. I have more chemo today and will probably feel minging later, but I don't care. All this pain and being utterly sick to the stomach along with all the other side effects have been worth it thus far.
I'm going to enjoy this moment and hold onto it when I'm yakking later.
Update on how chemo #6 coming up soon, then Radiotherapy!
Who says I don't know how to have fun?!?
Hayley x
Thursday 26 April 2012
My symptoms, operation and recovery.
I realised that I've never really fully explained as to how I'd been diagnosed with Stage 3 Bowel Cancer and thought it was about time I spilled the beans (so to speak).
It'd first started when I was carrying Autumn, at about 23 weeks into the pregnancy (June last year) I awoke in the middle of the night with the most excruciating stabbing pain in my left mid abdomen. I could hardly move the pain was so crippling. A trip to the emergency doctor that evening and it was concluded that I was suffering with round ligament pain. Autumn hadn't moved much that day either so I was told to keep an eye on her movements and if she wasn't moving to call the hospital the next day to get a scan. Thankfully, the next morning she was hopping around on my bladder, and as odd as that sounds, it's actually a very nice feeling!
The pain subsided very quickly and I thought nothing more of it.
Fast forward to mid August, this was two weeks after Autumn as delivered 13 weeks prematurely, the pain had returned in the same place so I went to see the midwives at Southampton General where Autumn was staying on on the Neonatal ward. The midwife poked around and described a palpable lump, but it was most likely something to do with giving birth two weeks before via c-section and things were just 'settling down'. I was given antibiotics as my infection markers were slightly elevated, the pain eased and I thought nothing more of it. We were too busy visiting our daughter twice daily to worry anymore about it, she had all of our focus.
No more symptoms arose until early December. I noticed more urgency to rush to the loo, stomach bloating and cramps and a general feeling of exhaustion. I put it down to feeling very depressed about the loss of Autumn in August. I wasn't coping very well with her passing away at all. I couldn't accept that her early arrival was 'just one of those unfortunate things' which is what the doctors had put it down to, her restricted growth was due to a blood clot compromising the placenta - why did this happen?
I felt tortured that I didn't have any answers and I missed her more than I can describe in words, especially coming up to Christmas.
Me and Autumn having cuddles before the worst happened, I miss her so much:
As December progressed, my tummy pain was becoming more acute and I ended up at A&E with the pain. The nurse curtly asked me if I'd taken paracetamol to help with the pain. Paracetamol didn't touch it! The doctor felt around my tummy and again the lump was there and infection markers were up and I was anaemic. I was also given a smear test to check for anything untoward in that area but thankfully it came back clear. I was sent away and was given a referral for a scan on my abdomen which I'd have to wait for two weeks.
Two days later I was having diarrhoea and started vomiting. Putting it down to IBS for which I've had bouts on and off for years, I phoned my GP to get it checked out. The GP thought it was IBS from the symptoms I was describing, even with the lump and I was prescribed Buscopan to stop the cramping, the doctor asked me to see her at the end of the week.
I got progressively worse and only now had I noticed a bit of blood when going to the loo. The end of the week arrived and after several days of sickness, diarrhoea and tummy pain - I was feeling terrible. I went back to the doctor, this time she had a more senior doctor sitting in the office with her, I guess she was appraising her. I looked awful and the doctor noted this, I was incredibly dehydrated, the doctor felt my tummy again and suspected it to be Diverticulitis. With this, I was given an immediate referral to the surgical assessment unit at my local hospital.
We want there straight away and I was given a bed quickly and placed on a drip to hydrate me. Doctors came in, felt my tummy, hmmm'd a bit, said it could be Diverticulitis or Crohn's disease and went away. This continued for the next three days. In this time I was actually starting to feel better. Sickness and diarrhoea had stopped and I was feeling more lively. I was sent for an ultrasound, X-ray and CT scan. I thought the doctors would review these, give me some pills and send me on my merry way.
No, this didn't happen.
Tuesday December 20th 2011 is a day I'll never forget. The surgeon, Mr C came into my room and told me I would need an operation the next day. He'd assumed the doctors had already told me this and what I would need an operation for. I didn't have a clue. I asked him why and he said, 'has nobody told you?' Erm, no!!! Mr C then told me they would be operating on me tomorrow and would be treating it as a bowel cancer removal procedure......
......????
What? I couldn't believe what I was hearing, surely their must have been some mistake! People with cancer are really ill and people with bowel cancer are a lot older than me?! I was asked if I have family history. I do, on both sides. Mr C said I was very young to have bowel cancer but it's not unheard of although quite rare. I asked him if this is the reason why our baby had stopped growing and her premature birth. My answer was given at last, he said this was very likely. The fact I'd been pregnant at the same time as having this tumour would have accelerated the growth and taken the blood supply away from her and also having cancer increases the chances of blood clots, the one which had compromised the placenta.
I have a deep hate for cancer for doing this to our daughter.
The next day I was prepped for theatre and said goodbye to Paul, I was scared that I wouldn't wake up from the operation and really sad to see him go.
In theatre, I was fitted with an epidural which was painful unlike the one I had for my c-section. I think it's because it was inserted higher up in my spine. Lots of people in scrubs and masks then shuffled me into a 'bear hugger' a device that keeps you still and warm during the operation. The theatre was freezing so this was quite welcome. After that I remember nothing until I woke up in recovery 7 1/2 hours later.
What my tummy looks like after surgery, bruises are from Clexane and Filgrastim injections:
I woke up in quite a cheerful mood, I was chatting away to the nurses who said I was very alert and chipper despite the length of time I'd been under anaesthetic. At this point they told me they would be removing the epidural and placing me on a morphine drip machine as I'd had my surgery as keyhole rather than as open, my recovery would be quicker so no need for the epidural big guns.
I was hooked up to the Morphine and it was keeping any pain at bay until I was wheeled around to the high care ward, where they forgot to plug it back in. I was pressing the button which would administer Morphine every six minutes but nothing was happening, the agony was immense! We only realised after about an hour that I was getting no pain relief, so we buzzed the nurses and they swiftly plugged it back in! The pain eased quite quickly after that.
The next few days were a bit of a blur, the surgeon had come by and said he was very confident that he'd removed everything bad and that the tumour was quite big, the size of a fist!
Being on the high care ward was certainly an experience. During the blur I was made to get out of bed the day after my op and walk myself to the end of the ward and back. That was painful. The nurses on that ward were mainly military and they were brilliant.
One particular nurse, a Captain (soon to be promoted to Major) in the Army was excellent. Captain M was caring but she wasn't taking any nonsense! I was made to move around despite my protests that it hurt too much. She told me if I didn't move I'd be at risk of pneumonia due to the lungs not inflating properly. The Captain was always there if I buzzed straight away. The day after I had my catheter removed I hadn't had a wee for nearly 24 hours. Captain M wasn't having any of this! She wheeled around a commode (yes, you have to leave all dignity at the door when you've had this sort of operation) closed the curtains and ordered me to wee within the next hour or that catheter was going straight back in, she didn't want me going into retention. This frightened me into finally having a tinkle and I was congratulated. The Captain had a real knack of making me get on with it!
Christmas day arrived and as a present my bowels had woken up after the op. My goodness, I wish they hadn't! I was moved from the high care ward to a normal recovery ward and I was up and out of bed every 15 minutes for a trip to the loo. My tummy was very painful as my pain meds had been lowered and every time I got up to walk to the toilet it felt like climbing a mountain. Worst Christmas day ever. The nurses showed me some festive compassion and I was moved to a side room where the 15 minute loo trips were more comfortable and I had privacy.
These frequent trips to the toilet continued for the next 48 hours. I begged the nurses for Imodium but I was denied due to having my recent operation. I was so low at this point, I thought this would be my lot in life. Always chained to the toilet. Gradually things improved and I was able to eat more and the loo trips became less. Finally, eight days post op I was allowed to go home and recover. I'd never been so happy to leave a hospital!
Here's the educational bit....
The main symptoms of bowel cancer are the following, these may not always be present:
These amazing charities have been so helpful since my diagnosis, there's a wealth of information that's been invaluable to me:
http://www.beatingbowelcancer.org/
http://www.bowelcanceruk.org.uk/
http://macmillan.org.uk/
I would urge you to take a visit to these sites!
Hayley x
It'd first started when I was carrying Autumn, at about 23 weeks into the pregnancy (June last year) I awoke in the middle of the night with the most excruciating stabbing pain in my left mid abdomen. I could hardly move the pain was so crippling. A trip to the emergency doctor that evening and it was concluded that I was suffering with round ligament pain. Autumn hadn't moved much that day either so I was told to keep an eye on her movements and if she wasn't moving to call the hospital the next day to get a scan. Thankfully, the next morning she was hopping around on my bladder, and as odd as that sounds, it's actually a very nice feeling!
The pain subsided very quickly and I thought nothing more of it.
Fast forward to mid August, this was two weeks after Autumn as delivered 13 weeks prematurely, the pain had returned in the same place so I went to see the midwives at Southampton General where Autumn was staying on on the Neonatal ward. The midwife poked around and described a palpable lump, but it was most likely something to do with giving birth two weeks before via c-section and things were just 'settling down'. I was given antibiotics as my infection markers were slightly elevated, the pain eased and I thought nothing more of it. We were too busy visiting our daughter twice daily to worry anymore about it, she had all of our focus.
No more symptoms arose until early December. I noticed more urgency to rush to the loo, stomach bloating and cramps and a general feeling of exhaustion. I put it down to feeling very depressed about the loss of Autumn in August. I wasn't coping very well with her passing away at all. I couldn't accept that her early arrival was 'just one of those unfortunate things' which is what the doctors had put it down to, her restricted growth was due to a blood clot compromising the placenta - why did this happen?
I felt tortured that I didn't have any answers and I missed her more than I can describe in words, especially coming up to Christmas.
Me and Autumn having cuddles before the worst happened, I miss her so much:
As December progressed, my tummy pain was becoming more acute and I ended up at A&E with the pain. The nurse curtly asked me if I'd taken paracetamol to help with the pain. Paracetamol didn't touch it! The doctor felt around my tummy and again the lump was there and infection markers were up and I was anaemic. I was also given a smear test to check for anything untoward in that area but thankfully it came back clear. I was sent away and was given a referral for a scan on my abdomen which I'd have to wait for two weeks.
Two days later I was having diarrhoea and started vomiting. Putting it down to IBS for which I've had bouts on and off for years, I phoned my GP to get it checked out. The GP thought it was IBS from the symptoms I was describing, even with the lump and I was prescribed Buscopan to stop the cramping, the doctor asked me to see her at the end of the week.
I got progressively worse and only now had I noticed a bit of blood when going to the loo. The end of the week arrived and after several days of sickness, diarrhoea and tummy pain - I was feeling terrible. I went back to the doctor, this time she had a more senior doctor sitting in the office with her, I guess she was appraising her. I looked awful and the doctor noted this, I was incredibly dehydrated, the doctor felt my tummy again and suspected it to be Diverticulitis. With this, I was given an immediate referral to the surgical assessment unit at my local hospital.
We want there straight away and I was given a bed quickly and placed on a drip to hydrate me. Doctors came in, felt my tummy, hmmm'd a bit, said it could be Diverticulitis or Crohn's disease and went away. This continued for the next three days. In this time I was actually starting to feel better. Sickness and diarrhoea had stopped and I was feeling more lively. I was sent for an ultrasound, X-ray and CT scan. I thought the doctors would review these, give me some pills and send me on my merry way.
No, this didn't happen.
Tuesday December 20th 2011 is a day I'll never forget. The surgeon, Mr C came into my room and told me I would need an operation the next day. He'd assumed the doctors had already told me this and what I would need an operation for. I didn't have a clue. I asked him why and he said, 'has nobody told you?' Erm, no!!! Mr C then told me they would be operating on me tomorrow and would be treating it as a bowel cancer removal procedure......
......????
What? I couldn't believe what I was hearing, surely their must have been some mistake! People with cancer are really ill and people with bowel cancer are a lot older than me?! I was asked if I have family history. I do, on both sides. Mr C said I was very young to have bowel cancer but it's not unheard of although quite rare. I asked him if this is the reason why our baby had stopped growing and her premature birth. My answer was given at last, he said this was very likely. The fact I'd been pregnant at the same time as having this tumour would have accelerated the growth and taken the blood supply away from her and also having cancer increases the chances of blood clots, the one which had compromised the placenta.
I have a deep hate for cancer for doing this to our daughter.
The next day I was prepped for theatre and said goodbye to Paul, I was scared that I wouldn't wake up from the operation and really sad to see him go.
In theatre, I was fitted with an epidural which was painful unlike the one I had for my c-section. I think it's because it was inserted higher up in my spine. Lots of people in scrubs and masks then shuffled me into a 'bear hugger' a device that keeps you still and warm during the operation. The theatre was freezing so this was quite welcome. After that I remember nothing until I woke up in recovery 7 1/2 hours later.
What my tummy looks like after surgery, bruises are from Clexane and Filgrastim injections:
I woke up in quite a cheerful mood, I was chatting away to the nurses who said I was very alert and chipper despite the length of time I'd been under anaesthetic. At this point they told me they would be removing the epidural and placing me on a morphine drip machine as I'd had my surgery as keyhole rather than as open, my recovery would be quicker so no need for the epidural big guns.
I was hooked up to the Morphine and it was keeping any pain at bay until I was wheeled around to the high care ward, where they forgot to plug it back in. I was pressing the button which would administer Morphine every six minutes but nothing was happening, the agony was immense! We only realised after about an hour that I was getting no pain relief, so we buzzed the nurses and they swiftly plugged it back in! The pain eased quite quickly after that.
The next few days were a bit of a blur, the surgeon had come by and said he was very confident that he'd removed everything bad and that the tumour was quite big, the size of a fist!
Being on the high care ward was certainly an experience. During the blur I was made to get out of bed the day after my op and walk myself to the end of the ward and back. That was painful. The nurses on that ward were mainly military and they were brilliant.
One particular nurse, a Captain (soon to be promoted to Major) in the Army was excellent. Captain M was caring but she wasn't taking any nonsense! I was made to move around despite my protests that it hurt too much. She told me if I didn't move I'd be at risk of pneumonia due to the lungs not inflating properly. The Captain was always there if I buzzed straight away. The day after I had my catheter removed I hadn't had a wee for nearly 24 hours. Captain M wasn't having any of this! She wheeled around a commode (yes, you have to leave all dignity at the door when you've had this sort of operation) closed the curtains and ordered me to wee within the next hour or that catheter was going straight back in, she didn't want me going into retention. This frightened me into finally having a tinkle and I was congratulated. The Captain had a real knack of making me get on with it!
Christmas day arrived and as a present my bowels had woken up after the op. My goodness, I wish they hadn't! I was moved from the high care ward to a normal recovery ward and I was up and out of bed every 15 minutes for a trip to the loo. My tummy was very painful as my pain meds had been lowered and every time I got up to walk to the toilet it felt like climbing a mountain. Worst Christmas day ever. The nurses showed me some festive compassion and I was moved to a side room where the 15 minute loo trips were more comfortable and I had privacy.
These frequent trips to the toilet continued for the next 48 hours. I begged the nurses for Imodium but I was denied due to having my recent operation. I was so low at this point, I thought this would be my lot in life. Always chained to the toilet. Gradually things improved and I was able to eat more and the loo trips became less. Finally, eight days post op I was allowed to go home and recover. I'd never been so happy to leave a hospital!
Here's the educational bit....
The main symptoms of bowel cancer are the following, these may not always be present:
- Bleeding from the bottom
- A change in your bowel habit for more than 3 weeks
- Abdominal pain, especially if severe
- A lump in your tummy
- Weight loss
- Tiredness
These amazing charities have been so helpful since my diagnosis, there's a wealth of information that's been invaluable to me:
http://www.beatingbowelcancer.org/
http://www.bowelcanceruk.org.uk/
http://macmillan.org.uk/
I would urge you to take a visit to these sites!
Hayley x
Tuesday 24 April 2012
Chemotherapy #5
I'm 41.6% of the way through on my chemo treatment according to my Dad, that sounds pretty good to me!
So, after almost 3 weeks in hospital I triumphantly returned home yesterday just to crash out on the sofa and sleep all afternoon. With each cycle, it seems to drain my energy levels more and more. It's a fatigue that not even the many hours of sleep I've had can fix.
I'm not complaining though! I'm home, I have all my comforts, my lovely comfortable bed, Paul can rest now and the ability to please myself. I'm feeling quite happy that I don't smell like hospital now. No matter how much you shower, hair wash and scrub, there's always that faint whiff of bandages and sterilising solution whilst staying in hospital.
So chemo number 5 was given to me as an inpatient and it was ok this time. I had no reaction to the chemo, the nurses ensured I was pilled up to the nines to prevent this from happening.
I had no sickness, just a bit of nausea, the only problems I've had is the stomach pain from which it's still recovering from the 4th cycle. I've been given morphine to manage the pain at home and it seems to be keeping that under control.
Neuropathy reared its ugly head for a time today, just need to remember to keep my hands and feet warm!
I'm free for a week and will be admitted as an inpatient on Monday for my sixth chemo. I'm too much of a loose cannon these days to be let home after the chemo so I'll probably be in until at least Thursday. I don't mind so much, it makes me feel safe that if anything goes wrong the staff are there to help straight away.
Dr B, my oncologist, seems to think I have some particular enzyme missing or faulty that helps break down the chemo. This is why he thinks I have such an adverse reaction. We want to keep pushing on with the treatment but do it as safely as possible, hence being an inpatient when the infusions happen.
I had a CT scan at the weekend to determine if I am still cancer free. I'm nervous but hopeful that with the surgery and chemo it hasn't had the chance to come back. I'd certainly hope that the way the treatment has made me feel so far, cancer cells haven't even had hope of blooming. I'll probably find out the results of these next week so I'll keep you posted.
For the next week, I'm going to enjoy my freedom - I did a lot of retail therapy from my hospital bed so I'm using this time to enjoy my purchases and possible make a few more!
See you on the other side of chemo #6!
Hayley x
So, after almost 3 weeks in hospital I triumphantly returned home yesterday just to crash out on the sofa and sleep all afternoon. With each cycle, it seems to drain my energy levels more and more. It's a fatigue that not even the many hours of sleep I've had can fix.
I'm not complaining though! I'm home, I have all my comforts, my lovely comfortable bed, Paul can rest now and the ability to please myself. I'm feeling quite happy that I don't smell like hospital now. No matter how much you shower, hair wash and scrub, there's always that faint whiff of bandages and sterilising solution whilst staying in hospital.
So chemo number 5 was given to me as an inpatient and it was ok this time. I had no reaction to the chemo, the nurses ensured I was pilled up to the nines to prevent this from happening.
I had no sickness, just a bit of nausea, the only problems I've had is the stomach pain from which it's still recovering from the 4th cycle. I've been given morphine to manage the pain at home and it seems to be keeping that under control.
Neuropathy reared its ugly head for a time today, just need to remember to keep my hands and feet warm!
I'm free for a week and will be admitted as an inpatient on Monday for my sixth chemo. I'm too much of a loose cannon these days to be let home after the chemo so I'll probably be in until at least Thursday. I don't mind so much, it makes me feel safe that if anything goes wrong the staff are there to help straight away.
Dr B, my oncologist, seems to think I have some particular enzyme missing or faulty that helps break down the chemo. This is why he thinks I have such an adverse reaction. We want to keep pushing on with the treatment but do it as safely as possible, hence being an inpatient when the infusions happen.
I had a CT scan at the weekend to determine if I am still cancer free. I'm nervous but hopeful that with the surgery and chemo it hasn't had the chance to come back. I'd certainly hope that the way the treatment has made me feel so far, cancer cells haven't even had hope of blooming. I'll probably find out the results of these next week so I'll keep you posted.
For the next week, I'm going to enjoy my freedom - I did a lot of retail therapy from my hospital bed so I'm using this time to enjoy my purchases and possible make a few more!
See you on the other side of chemo #6!
Hayley x
Saturday 7 April 2012
Chemotherapy #4
A quarter of the way through, can't say I'm going to remember them in a hurry!
So, dear reader, I'm once again typing this blog post from my hospital bed. Chemotherapy #4 can be described as an epic fail as far as my health is concerned.
It was already delayed from my usual Friday to the following Monday due to my low Neutrophil counts, so I enjoyed my weekend of freedom before knuckling down for #4 on Monday.
Monday came around too quickly and we were back at the QA to get my bloods tested. It was a quick visit then back home to wait for the phone call to let me know whether we were good to go for the afternoon.
After a couple of hours deliberating on whether I really wanted another little break or just to get out of the way, the phone call came from the hospital to tell me that my bloods had just about scraped through and that I could go ahead with #4. I felt a little disappointed and relieved at the same time, it's a very odd way to feel. I was enjoying feeling good and at the same time I just wanted to get another chemo out of the way.
So with the news that I was good to push on we made our way back to the QA to be hooked up to the machine that administers the chemo.
Chemo infusion went uneventfully as usual and after 4 hours we were on our way back home. This time, we were much wiser about managing the allergic reaction I have, so I popped the paracetamol and anti histamines to ward off any fever and rash. So far so good! The only weird thing happening that evening that my eye was twitching uncontrollably, nothing that I couldn't deal with, although if I'd gone out in public I may have had some strange looks!
The evening went on, nothing bad was happening. Fantastic! We've cracked it!
Wrong, wrong, WRONG!!!
Midnight-ish I started to get a dull ache just under my rib cage, nothing major to start with but it progressively got worse as the hours ticked on and then sick. Lots of sick. Paul phoned the oncology ward to ask for advice,do you've guessed it, back to the hospital. At 4 am. Why can't these things happen at a more respectable hour!!
Luckily a bed was free as soon as I'd arrived at the hospital and a doctor came to see me very swiftly. The verdict initially was to remove the 5FU pump but we convinced him this would be a very bad idea. My oncologist would be proud! Removing the chemo pump before it finishes can jeopardise the whole treatment (I've been told) so there it remained. Whilst this was happening the pain was getting worse and more sickness. I was feeling very rough indeed.
A few hours later I was being whisked away to get an X-ray done of my abdomen, to be honest it was all a bit of the blur because at this point, the pain was excruciating.
I was returned back to the ward to wait the verdict. It really is a haze of sickness and sleep, crying and saying to Paul 'I can't do this' over and over.
Poor Paul. Always by my side through my worst times, telling me I'm doing really well and encouraging me. It takes a very special person to put up with my behaviour throughout this, I'm very lucky to have him!
Next thing I knew, a nurse appeared by my bedside, the only way I can describe her is the female Morgan Freeman. A very worldly wise lady who came to explain Clostridium Difficile or C-Diff for short to me and that I'd be moved to a private room as it seems I'm a carrier for it.
Um, what?!
Apparently last time I was in hospital I was tested for this nasty little bug and it was positive. It appears that I most probably caught it after my operation as I tested negative prior to going under the knife. Not happy!
On the plus side I do get my own room with toilet and shower, practical luxury!
I was wheeled around to this room and this is where I have remained.
The sickness continued in an awesome fashion and nothing was making its way through to the other end, lovely!
An X-ray was ordered to see if they could find the source of the problem but everything appeared normal. I wasn't feeling normal though. It seemed like a haze of sleeping, being sick and horrendous pain. I was given endless paracetamol, codeine, buscopan and various other concoctions but none of them were staying inside. The nurse decided the only way was IV. So all my meds were given through my veins, it was the only way. The pain didn't stop with these so it was time to wheel out the big guns.
I was given oramorph, a liquid version of morphine that I was able to keep down and manage a good nights sleep. This was until about 3am when the vomiting started again and this time, it was much akin to the little girl
from the film 'The Exorcist' not pretty at all. After a few bowls and it splashing all over me (I told you it wasn't pretty) I didn't have the strength to do anything else than go back to sleep, with bile down me. How degrading.
Next morning, I was taken away for another X-ray very early and didn't have a chance to change my green splattered top and I was wheeled away feeling like death and looking much like it as well.
On the way back from the X-ray, I bumped into an old school friend who now happens to be an orthopaedic doctor, I also used to fancy him a bit. Imagine my horror when I realised I looked like a bedraggled old witch with green down her top and having to tell him what was up with me. Urgh, I know how Bridget Jones felt most of the time - was utterly horrified with myself. Dr G, we'll call him, was very nice to me and wished me all the best, this is while I not so subtly tried to keep my arms crossed over the stained top. Ridiculous!!!!
Being wheeled back to my room and feeling like crawling under the nearest rock with embarrassment - I had to wait for my bag of fluids to finish before I could have a shower and be rid of the offending top, so I decided to have some more sleep. The pain continued to rage on and I buzzed the nurse for further pain relief. Nurse A came to my rescue with a powerful drug, Diamorphine.
Diamorphine. Where to start with this drug.
It's street name is Heroin, it's given as a subcutaneous injection and my goodness does it kill pain!!!
Nurse A explained that if you take Diamorphine for pain only, it's not a problem - its when you take it with. Without pain it becomes addictive.
So, I got my first shot of Crack and it worked almost instantly. The enormous pain in my abdomen eased right down, my legs became heavy and I dozed off in a drug haze, but I was relieved of the pain for a while and I could rest.
When I arose from my slumber the X-ray results were back. It was now clear that there was inflammation in my small bowel and this was the cause of my pain. I remember the doctor describing it as a 'sub acute partial blockage' which could have been caused by a number or all of the following;
Chemotherapy irritating the bowel lining.
C-diff.
Adhesions from the colectomy surgery.
Anyway, whatever caused it was making my life very painful at this point.
I was formally declared nil by mouth (not that I was eating anything anyway) and instructed to only take sips of water. This was the action plan. Manage the pain, sit it out and take various IV meds, drips and a 24 hour anti sickness syringe driver to keep me as comfortable as possible until the blockage cleared. The surgical team paid me various visits and they seemed confident it would right itself without having to put me under the knife.
Four days passed and the sickness and pain continued despite 24/7 sickness preventative medicine, Diamorphine was used to manage the pain. I was prescribed to have it every 4 hours but I didn't want it that much to get hooked. The great thing about Diamorphine is that it makes all pain go away and it gave me an appetite. All I could think and talk about was food, but wasn't allowed any. I dreamt about sausage sandwiches (I don't eat them anymore) bourbon biscuits and cheddars. I would turn to Paul in a drug fuelled haze with 'do you remember that time when we had that lovely meal at......' or 'I really want to eat fajitas' and 'oh, I really want to eat that (insert random meals that we've had over the years) right now'. Paul found all of this highly amusing.
At least I seemed happy!
So after four days of it all coming out the top end, the other end started to work. And it was working in an almighty fashion, ahem. The blockage was no more but my trips to the bathroom had increased to 15 times a day. This is what I described in my first blog post as the unglamorous side of life. I was relieved (excuse the pun) that the blockage was resolving itself but upset that my bowels had gone into overdrive. I was still getting the cramping pain but it was lower down and it was still fairly brutal. The nurse asked I kept a record of each loo visit, detailing the time, volume and consistency. What have I become?
I begged the nurse for Imodium, but I was denied due to it potentially being a bug. Miserable was not the word!
This carried on and off for a week in varying degrees, the doctor seemed a little concerned and kept me on IV fluids to prevent dehydration. I was able to start eating again. I say eating in the loosest sense.
I started out on a lovely nutritional supplement called Fresubin. It has all of the vitamins and nutrients needed to keep a human alive and 400 calories in each bottle. I graduated from here to soft foods such as mash and gravy (disgusting hospital version), custard, porridge and cheesy wotsits. Not very healthy at all.
I'm now back to eating almost normally, I'm still avoiding fruit and veg to rest my digestive system further.
So here I am, nearly two weeks in hospital and chemo #5 tomorrow. I've just finished having 2 units of blood transfused, the finest AB+ the NHS could find to boost my Hb, I'm anaemic so they want me bright eyed and bushy tailed for tomorrows new adventure.
I'm going to stay in until the pump comes off on Wednesday, I hate to say it but after the problems I've had so far - I feel safer in hospital so if anything does go wrong, they can deal with it immediately.
Can't wait!
Hayley x
So, dear reader, I'm once again typing this blog post from my hospital bed. Chemotherapy #4 can be described as an epic fail as far as my health is concerned.
It was already delayed from my usual Friday to the following Monday due to my low Neutrophil counts, so I enjoyed my weekend of freedom before knuckling down for #4 on Monday.
Monday came around too quickly and we were back at the QA to get my bloods tested. It was a quick visit then back home to wait for the phone call to let me know whether we were good to go for the afternoon.
After a couple of hours deliberating on whether I really wanted another little break or just to get out of the way, the phone call came from the hospital to tell me that my bloods had just about scraped through and that I could go ahead with #4. I felt a little disappointed and relieved at the same time, it's a very odd way to feel. I was enjoying feeling good and at the same time I just wanted to get another chemo out of the way.
So with the news that I was good to push on we made our way back to the QA to be hooked up to the machine that administers the chemo.
Chemo infusion went uneventfully as usual and after 4 hours we were on our way back home. This time, we were much wiser about managing the allergic reaction I have, so I popped the paracetamol and anti histamines to ward off any fever and rash. So far so good! The only weird thing happening that evening that my eye was twitching uncontrollably, nothing that I couldn't deal with, although if I'd gone out in public I may have had some strange looks!
The evening went on, nothing bad was happening. Fantastic! We've cracked it!
Wrong, wrong, WRONG!!!
Midnight-ish I started to get a dull ache just under my rib cage, nothing major to start with but it progressively got worse as the hours ticked on and then sick. Lots of sick. Paul phoned the oncology ward to ask for advice,do you've guessed it, back to the hospital. At 4 am. Why can't these things happen at a more respectable hour!!
Luckily a bed was free as soon as I'd arrived at the hospital and a doctor came to see me very swiftly. The verdict initially was to remove the 5FU pump but we convinced him this would be a very bad idea. My oncologist would be proud! Removing the chemo pump before it finishes can jeopardise the whole treatment (I've been told) so there it remained. Whilst this was happening the pain was getting worse and more sickness. I was feeling very rough indeed.
A few hours later I was being whisked away to get an X-ray done of my abdomen, to be honest it was all a bit of the blur because at this point, the pain was excruciating.
I was returned back to the ward to wait the verdict. It really is a haze of sickness and sleep, crying and saying to Paul 'I can't do this' over and over.
Poor Paul. Always by my side through my worst times, telling me I'm doing really well and encouraging me. It takes a very special person to put up with my behaviour throughout this, I'm very lucky to have him!
Next thing I knew, a nurse appeared by my bedside, the only way I can describe her is the female Morgan Freeman. A very worldly wise lady who came to explain Clostridium Difficile or C-Diff for short to me and that I'd be moved to a private room as it seems I'm a carrier for it.
Um, what?!
Apparently last time I was in hospital I was tested for this nasty little bug and it was positive. It appears that I most probably caught it after my operation as I tested negative prior to going under the knife. Not happy!
On the plus side I do get my own room with toilet and shower, practical luxury!
I was wheeled around to this room and this is where I have remained.
The sickness continued in an awesome fashion and nothing was making its way through to the other end, lovely!
An X-ray was ordered to see if they could find the source of the problem but everything appeared normal. I wasn't feeling normal though. It seemed like a haze of sleeping, being sick and horrendous pain. I was given endless paracetamol, codeine, buscopan and various other concoctions but none of them were staying inside. The nurse decided the only way was IV. So all my meds were given through my veins, it was the only way. The pain didn't stop with these so it was time to wheel out the big guns.
I was given oramorph, a liquid version of morphine that I was able to keep down and manage a good nights sleep. This was until about 3am when the vomiting started again and this time, it was much akin to the little girl
from the film 'The Exorcist' not pretty at all. After a few bowls and it splashing all over me (I told you it wasn't pretty) I didn't have the strength to do anything else than go back to sleep, with bile down me. How degrading.
Next morning, I was taken away for another X-ray very early and didn't have a chance to change my green splattered top and I was wheeled away feeling like death and looking much like it as well.
On the way back from the X-ray, I bumped into an old school friend who now happens to be an orthopaedic doctor, I also used to fancy him a bit. Imagine my horror when I realised I looked like a bedraggled old witch with green down her top and having to tell him what was up with me. Urgh, I know how Bridget Jones felt most of the time - was utterly horrified with myself. Dr G, we'll call him, was very nice to me and wished me all the best, this is while I not so subtly tried to keep my arms crossed over the stained top. Ridiculous!!!!
Being wheeled back to my room and feeling like crawling under the nearest rock with embarrassment - I had to wait for my bag of fluids to finish before I could have a shower and be rid of the offending top, so I decided to have some more sleep. The pain continued to rage on and I buzzed the nurse for further pain relief. Nurse A came to my rescue with a powerful drug, Diamorphine.
Diamorphine. Where to start with this drug.
It's street name is Heroin, it's given as a subcutaneous injection and my goodness does it kill pain!!!
Nurse A explained that if you take Diamorphine for pain only, it's not a problem - its when you take it with. Without pain it becomes addictive.
So, I got my first shot of Crack and it worked almost instantly. The enormous pain in my abdomen eased right down, my legs became heavy and I dozed off in a drug haze, but I was relieved of the pain for a while and I could rest.
When I arose from my slumber the X-ray results were back. It was now clear that there was inflammation in my small bowel and this was the cause of my pain. I remember the doctor describing it as a 'sub acute partial blockage' which could have been caused by a number or all of the following;
Chemotherapy irritating the bowel lining.
C-diff.
Adhesions from the colectomy surgery.
Anyway, whatever caused it was making my life very painful at this point.
I was formally declared nil by mouth (not that I was eating anything anyway) and instructed to only take sips of water. This was the action plan. Manage the pain, sit it out and take various IV meds, drips and a 24 hour anti sickness syringe driver to keep me as comfortable as possible until the blockage cleared. The surgical team paid me various visits and they seemed confident it would right itself without having to put me under the knife.
Four days passed and the sickness and pain continued despite 24/7 sickness preventative medicine, Diamorphine was used to manage the pain. I was prescribed to have it every 4 hours but I didn't want it that much to get hooked. The great thing about Diamorphine is that it makes all pain go away and it gave me an appetite. All I could think and talk about was food, but wasn't allowed any. I dreamt about sausage sandwiches (I don't eat them anymore) bourbon biscuits and cheddars. I would turn to Paul in a drug fuelled haze with 'do you remember that time when we had that lovely meal at......' or 'I really want to eat fajitas' and 'oh, I really want to eat that (insert random meals that we've had over the years) right now'. Paul found all of this highly amusing.
At least I seemed happy!
So after four days of it all coming out the top end, the other end started to work. And it was working in an almighty fashion, ahem. The blockage was no more but my trips to the bathroom had increased to 15 times a day. This is what I described in my first blog post as the unglamorous side of life. I was relieved (excuse the pun) that the blockage was resolving itself but upset that my bowels had gone into overdrive. I was still getting the cramping pain but it was lower down and it was still fairly brutal. The nurse asked I kept a record of each loo visit, detailing the time, volume and consistency. What have I become?
I begged the nurse for Imodium, but I was denied due to it potentially being a bug. Miserable was not the word!
This carried on and off for a week in varying degrees, the doctor seemed a little concerned and kept me on IV fluids to prevent dehydration. I was able to start eating again. I say eating in the loosest sense.
I started out on a lovely nutritional supplement called Fresubin. It has all of the vitamins and nutrients needed to keep a human alive and 400 calories in each bottle. I graduated from here to soft foods such as mash and gravy (disgusting hospital version), custard, porridge and cheesy wotsits. Not very healthy at all.
I'm now back to eating almost normally, I'm still avoiding fruit and veg to rest my digestive system further.
So here I am, nearly two weeks in hospital and chemo #5 tomorrow. I've just finished having 2 units of blood transfused, the finest AB+ the NHS could find to boost my Hb, I'm anaemic so they want me bright eyed and bushy tailed for tomorrows new adventure.
I'm going to stay in until the pump comes off on Wednesday, I hate to say it but after the problems I've had so far - I feel safer in hospital so if anything does go wrong, they can deal with it immediately.
Can't wait!
Hayley x
Friday 30 March 2012
Chemo #4 DENIED (for now)
Really? I'm only 3 cycles in and now my white blood cells have decided to pack up, go on holiday and not return in time for chemo #4. This is a little bit annoying as I'd geared myself up for my next treatment, warpaint and all - much like Mel Gibson from Braveheart but without the questionable Scottish accent.
I have to go back bright and breezy on Monday to have another blood test to see if they are at 1, they're at 0.7 right now so I'm what's considered moderately Neutropenic. If I'm back up to 1 I can have chemo on Monday afternoon. Yay(!)
A couple of positives to take from this small break;
1) I get to spend a nice, healthy, productive weekend with Paul.
2) If the chemo is destroying my healthy cells which do grow back, I can only imagine they are nuking any rogue cancer cells, if any remain, which don't grow back (hopefully)!
I knew all was not going to plan when we got to the day unit today and my name wasn't on the list for treatment. The receptionist asked us to go and sit in the waiting area whilst she found out what was going on.
Half an hour later, Blanquita the most amazing head nurse called my name and asked us to follow her into a side room.
Blanquita is from the Philippines. A rather round lady with the sweetest, tiniest voice and bubbly personality. So friendly and reassuring. At her request I'm to call her 'Ate' pronounced 'Atta' which means older sister in Filipino. So I do, she's my newly adopted older sister who takes care of me.
Ate asked us to sit down and she explained to us that the chemo hadn't been dispensed and she would find out why as soon as possible. I wouldn't be having it today as by the time it would be dispensed it would be far too late and they would have to keep me as an in patient, something they want to avoid when I'm fairly healthy (germy hospitals).
Ate went away to find out if I could be booked in on Monday, she came back and said my white blood count was a bit too low to have chemo today anyway so a couple more days reprieve and to get my body in a stronger place to go for #4.
So, I have another weekend of FREEEEEEDOM (apologies for the second Braveheart reference in one post), I'm going to really enjoy it, but avoid large crowds so not to catch any germs (hmmmf).
Hayley x
I have to go back bright and breezy on Monday to have another blood test to see if they are at 1, they're at 0.7 right now so I'm what's considered moderately Neutropenic. If I'm back up to 1 I can have chemo on Monday afternoon. Yay(!)
A couple of positives to take from this small break;
1) I get to spend a nice, healthy, productive weekend with Paul.
2) If the chemo is destroying my healthy cells which do grow back, I can only imagine they are nuking any rogue cancer cells, if any remain, which don't grow back (hopefully)!
I knew all was not going to plan when we got to the day unit today and my name wasn't on the list for treatment. The receptionist asked us to go and sit in the waiting area whilst she found out what was going on.
Half an hour later, Blanquita the most amazing head nurse called my name and asked us to follow her into a side room.
Blanquita is from the Philippines. A rather round lady with the sweetest, tiniest voice and bubbly personality. So friendly and reassuring. At her request I'm to call her 'Ate' pronounced 'Atta' which means older sister in Filipino. So I do, she's my newly adopted older sister who takes care of me.
Ate asked us to sit down and she explained to us that the chemo hadn't been dispensed and she would find out why as soon as possible. I wouldn't be having it today as by the time it would be dispensed it would be far too late and they would have to keep me as an in patient, something they want to avoid when I'm fairly healthy (germy hospitals).
Ate went away to find out if I could be booked in on Monday, she came back and said my white blood count was a bit too low to have chemo today anyway so a couple more days reprieve and to get my body in a stronger place to go for #4.
So, I have another weekend of FREEEEEEDOM (apologies for the second Braveheart reference in one post), I'm going to really enjoy it, but avoid large crowds so not to catch any germs (hmmmf).
Hayley x
Wednesday 28 March 2012
Mid chemo musings
As I come up to my next chemo session the anxiety levels rise at the same time as a little sense of relief ensues.
I will be having my 4th chemo session on Friday, that day of the week was always my favourite but it's fast becoming my worst.
I dread the reaction that I will have, the high temperature, sickness, anxiety, chemo brain fog, neuropathy, facial and limb spasms.
I have to keep reminding myself that this is temporary. This is a moment in my life that will not last forever. Out of my 32 years on this Earth, this is a blip that will earn me a 'Get Out Of Jail Free' card for the rest of my life. I have to believe this.
I will go and see parts of the world I've always wanted to see. I will have a family and if I have to fall back on the IVF route then it was a very wise insurance to take before the chemo / radiotherapy potentially rob me of fertility.
These are all things I need to do for myself, my husband, family and friends. This is a fight and struggle that I have to face up to for the almighty prize at the end. My life back.
One person who I have to thank for the discovery of my disease is no longer with us. Our beautiful daughter, Autumn. She gave me the warnings of this cancer, her life was only four weeks long, she was born far too early because of the tumour that was growing inside me. The bravest and wisest soul I have ever known. If it wasn't for her, I could be walking down the palliative route rather than the curative one.
I have a draft blog post just for her. I've been writing it for nearly 6 weeks but the memories, although wonderful are also too painful for me to recount. I will post her story when I can finish it and when I feel at my strongest.
A message from Mummy:
I love you my sweet girl, I'll never forget how you showed me how to live my life and warned me of the tumour that could have ended me. You gave your life for me, I will fight for it because of you. I'm so proud of you, my brave little bird, and always will be. I will see you again. Mummy xxx
I will be having my 4th chemo session on Friday, that day of the week was always my favourite but it's fast becoming my worst.
I dread the reaction that I will have, the high temperature, sickness, anxiety, chemo brain fog, neuropathy, facial and limb spasms.
I have to keep reminding myself that this is temporary. This is a moment in my life that will not last forever. Out of my 32 years on this Earth, this is a blip that will earn me a 'Get Out Of Jail Free' card for the rest of my life. I have to believe this.
I will go and see parts of the world I've always wanted to see. I will have a family and if I have to fall back on the IVF route then it was a very wise insurance to take before the chemo / radiotherapy potentially rob me of fertility.
These are all things I need to do for myself, my husband, family and friends. This is a fight and struggle that I have to face up to for the almighty prize at the end. My life back.
One person who I have to thank for the discovery of my disease is no longer with us. Our beautiful daughter, Autumn. She gave me the warnings of this cancer, her life was only four weeks long, she was born far too early because of the tumour that was growing inside me. The bravest and wisest soul I have ever known. If it wasn't for her, I could be walking down the palliative route rather than the curative one.
I have a draft blog post just for her. I've been writing it for nearly 6 weeks but the memories, although wonderful are also too painful for me to recount. I will post her story when I can finish it and when I feel at my strongest.
A message from Mummy:
I love you my sweet girl, I'll never forget how you showed me how to live my life and warned me of the tumour that could have ended me. You gave your life for me, I will fight for it because of you. I'm so proud of you, my brave little bird, and always will be. I will see you again. Mummy xxx
Friday 23 March 2012
Chemotherapy #3
Friday 23rd March 2012
It's been a week since Chemo #3 and now I'm only just about getting around to post about it, slacking!
So how did it go this time?
Well it was similar to #2 but far less aggressive. My real problem is the allergic reaction that we believe Oxaliplatin gives me, the oncologist believed that this would be solved by a large dose of antihistamines and hyrdocortisone prior to the infusion which was also extended from 2 to 3 hours. A slower infusion is sometimes used to reduce the side effects. As well as my daily Clexane injections I now have a 3 day course of G-CSF injections between each cycle to prevent Neutropenia. The injections aren't bad and as long as they keep my white blood cells at an acceptable level that suits me. The last thing I want is a nasty infection to prevent me from pushing through these horrible chemo sessions!
Chemo day was quite long due to delays in getting the treatment started and we got home at about 7pm that evening. The usual symptoms had started, hands ceasing up, muscle twitching, pins and needles and the cold sensation in my fingers and toes but these are fairly manageable if not a little annoying. After avoiding food most of the day to prevent any chemo sickness I was quite hungry but decided to play it safe with soup and bread for dinner.
After waiting for a couple of hours to see if any of the allergic reactions would kick in, I began to feel quite tired, counted myself lucky and went to bed at 10.30pm......
....then 1am came around. I'd been dozing on and off but then quite suddenly the chills and aching legs had started. I woke Paul up, "I feel really sick". A few seconds later I was violently sick, I'd felt quite pleased with myself for being prepared with a sick bowl next to the bed as there was no way I was making it to the bathroom. The sickness carried on for about 10 minutes, Paul got me to drink some water when I'd finally stopped but that came back up again. Gross.
When I'd stopped throwing up a couple of minutes later, I did feel better but I noticed I was feeling hot, very hot again. Paul was already on the phone to the oncology unit at the QA and I checked my temperature. 39.2C (102F), oh dear...back to the fever again. As Paul talked to the nurse, I was popping another antihistamine and paracetamol to help bring my temperature down and stop the allergic reaction in it's tracks.
Paul and I decided (along with the nurse of course) to monitor my temperature over the next hour with the help of the paracetamol, antihistamine and many pints of water to see if this alone would help without me being admitted into hospital, again, in the middle of the night.
So over the next hour, every 10 minutes Paul took my temperature and slowly but surely it was getting lower and lower, but it was still above the magical 38C (hospital time) temperature. We called the oncology ward again for further advice and were told that if I was feeling better to keep drinking plenty of water and monitor my temperature as it was going the right way, in the interim, a bed was being prepared for me just in case. The 10 minute interval temperature taking took us to 4am, where finally it was back down to an acceptable level.
It felt like an achievement to keep me out of hospital this time, we decided to get a bit of sleep, setting the alarm for 5am to check my temperature and make any decisions then. The alarm sounded almost as soon as it was set it seemed and I was tested again, all seemed ok. More sleep. 7am, temperature was still ok.
It was a long night but I'd dodged the hospital admittance. After all that excitement, I was exhausted and slept almost solidly until 6pm Saturday night. I felt so much better for it.
That's about as eventful as the last week has been thankfully. I've mainly been in a chemo induced slumber for much of this week, only today have I had some energy. With the nice weather this weekend, I'm going to make the most of it before round #4 next Friday. That's a third of the way through chemo!
I will be having a "break" after the 6th chemo session. By break, I mean 5 weeks of 5 days a week radiotherapy. The radiotherapy is to prevent anything from coming back from the spot where the tumour was, in the surgeons words, "throwing everything they can at me" to ensure the cancer doesn't return.
Hayley x
It's been a week since Chemo #3 and now I'm only just about getting around to post about it, slacking!
So how did it go this time?
Well it was similar to #2 but far less aggressive. My real problem is the allergic reaction that we believe Oxaliplatin gives me, the oncologist believed that this would be solved by a large dose of antihistamines and hyrdocortisone prior to the infusion which was also extended from 2 to 3 hours. A slower infusion is sometimes used to reduce the side effects. As well as my daily Clexane injections I now have a 3 day course of G-CSF injections between each cycle to prevent Neutropenia. The injections aren't bad and as long as they keep my white blood cells at an acceptable level that suits me. The last thing I want is a nasty infection to prevent me from pushing through these horrible chemo sessions!
Chemo day was quite long due to delays in getting the treatment started and we got home at about 7pm that evening. The usual symptoms had started, hands ceasing up, muscle twitching, pins and needles and the cold sensation in my fingers and toes but these are fairly manageable if not a little annoying. After avoiding food most of the day to prevent any chemo sickness I was quite hungry but decided to play it safe with soup and bread for dinner.
After waiting for a couple of hours to see if any of the allergic reactions would kick in, I began to feel quite tired, counted myself lucky and went to bed at 10.30pm......
....then 1am came around. I'd been dozing on and off but then quite suddenly the chills and aching legs had started. I woke Paul up, "I feel really sick". A few seconds later I was violently sick, I'd felt quite pleased with myself for being prepared with a sick bowl next to the bed as there was no way I was making it to the bathroom. The sickness carried on for about 10 minutes, Paul got me to drink some water when I'd finally stopped but that came back up again. Gross.
When I'd stopped throwing up a couple of minutes later, I did feel better but I noticed I was feeling hot, very hot again. Paul was already on the phone to the oncology unit at the QA and I checked my temperature. 39.2C (102F), oh dear...back to the fever again. As Paul talked to the nurse, I was popping another antihistamine and paracetamol to help bring my temperature down and stop the allergic reaction in it's tracks.
Paul and I decided (along with the nurse of course) to monitor my temperature over the next hour with the help of the paracetamol, antihistamine and many pints of water to see if this alone would help without me being admitted into hospital, again, in the middle of the night.
So over the next hour, every 10 minutes Paul took my temperature and slowly but surely it was getting lower and lower, but it was still above the magical 38C (hospital time) temperature. We called the oncology ward again for further advice and were told that if I was feeling better to keep drinking plenty of water and monitor my temperature as it was going the right way, in the interim, a bed was being prepared for me just in case. The 10 minute interval temperature taking took us to 4am, where finally it was back down to an acceptable level.
It felt like an achievement to keep me out of hospital this time, we decided to get a bit of sleep, setting the alarm for 5am to check my temperature and make any decisions then. The alarm sounded almost as soon as it was set it seemed and I was tested again, all seemed ok. More sleep. 7am, temperature was still ok.
It was a long night but I'd dodged the hospital admittance. After all that excitement, I was exhausted and slept almost solidly until 6pm Saturday night. I felt so much better for it.
That's about as eventful as the last week has been thankfully. I've mainly been in a chemo induced slumber for much of this week, only today have I had some energy. With the nice weather this weekend, I'm going to make the most of it before round #4 next Friday. That's a third of the way through chemo!
I will be having a "break" after the 6th chemo session. By break, I mean 5 weeks of 5 days a week radiotherapy. The radiotherapy is to prevent anything from coming back from the spot where the tumour was, in the surgeons words, "throwing everything they can at me" to ensure the cancer doesn't return.
Hayley x
Sunday 11 March 2012
...and I'm feeling good!
Sunday 11th March 2012
The fog has lifted, what a difference a few days makes!
Since Friday afternoon, I feel more like the old Hayley. I feel fit, well, have energy and an appetite! I've been given the very good advice to treasure these days in between chemo sessions (thank you Joanne). I've managed 3 meals the past couple of days and have actually enjoyed them. It's amazing how different I feel, I'm so grateful for this reprieve.
Saturday started a little bit shakily, had a slight whiff of nausea and a sinking feeling. I took one Domperidone (sounds like Dom Perignon - not as nice but of more use to me at the moment) and one Diazepam and within an hour, I was ready to face the world. I'm finding Diazepam useful, I'm on the lowest dose and so far I have only taken two...one Friday and one Saturday. I'm determined to only take it when absolutely necessary, and happily - today has been a drug free day. I've had so many people on Twitter and Facebook message me to share their experiences of anxiety, I'm humbled by these individuals stories and how they have coped with anxiety and depression - it really helps me. Many people have used Diazepam to help them through the tough times, I don't feel so alone now.
So, I feel in a positive frame of mind. so here's what's happened....
Nice things I've done and felt this weekend:
Laughed with Paul
Ate good food
Had cake
Not sick
Not tired
Worn make-up
Hardly any anxiety
Walked in the woods
Sat in the sunshine
Spent time with friends (Jo, Dan, Bry, Matt and Vicky)
Flowers from Jo
Hugged my Mum and Dad
Had a good long chat with my Brother
Went to B&Q for ideas on various projects on our house
Not thought about cancer
Looking forward to the next few days of *touch wood* feeling like this before chemo #3.
Hayley x
The fog has lifted, what a difference a few days makes!
Since Friday afternoon, I feel more like the old Hayley. I feel fit, well, have energy and an appetite! I've been given the very good advice to treasure these days in between chemo sessions (thank you Joanne). I've managed 3 meals the past couple of days and have actually enjoyed them. It's amazing how different I feel, I'm so grateful for this reprieve.
Saturday started a little bit shakily, had a slight whiff of nausea and a sinking feeling. I took one Domperidone (sounds like Dom Perignon - not as nice but of more use to me at the moment) and one Diazepam and within an hour, I was ready to face the world. I'm finding Diazepam useful, I'm on the lowest dose and so far I have only taken two...one Friday and one Saturday. I'm determined to only take it when absolutely necessary, and happily - today has been a drug free day. I've had so many people on Twitter and Facebook message me to share their experiences of anxiety, I'm humbled by these individuals stories and how they have coped with anxiety and depression - it really helps me. Many people have used Diazepam to help them through the tough times, I don't feel so alone now.
So, I feel in a positive frame of mind. so here's what's happened....
Nice things I've done and felt this weekend:
Laughed with Paul
Ate good food
Had cake
Not sick
Not tired
Worn make-up
Hardly any anxiety
Walked in the woods
Sat in the sunshine
Spent time with friends (Jo, Dan, Bry, Matt and Vicky)
Flowers from Jo
Hugged my Mum and Dad
Had a good long chat with my Brother
Went to B&Q for ideas on various projects on our house
Not thought about cancer
Looking forward to the next few days of *touch wood* feeling like this before chemo #3.
Hayley x
Friday 9 March 2012
Post chemo #2 carnage.
Friday 9th March
Well, hello to the world of the living.
After the past weekend's escapades, I had another eventful week which involved the following:
Nausea
Vomiting
Not eating
Fatigue
Chest tightness
Fainting
Ambulance
Hospital
Crying
More crying
Sleeping
More sleeping
Anxiety
Buying an iPad 3
Out of those 14 items, guess which was my favourite.
Chemotherapy, to use a cricketing term which my Dad would be proud of; has knocked me for six. I believe this is due to the allergic reaction I had last weekend and the hospital not giving me the correct dosage of steroids, post chemo.
Steroids are supposed to make you feel better and give you an appetite after the infusion for a few days after whilst the drug is still whizzing around in your veins. I was supposed to have 12 tablets spaced over Saturday, Sunday and Monday. I only got 3. I protested to the nurses that these were the doses I was supposed to get, but the drug rounds are random at best.
I am in no way knocking the wonderful nurses, they have a very tough job. I just wished there was some consistency with the care. I really believe that if I'd been giving the correct dose of steroids I would have had less problems this week with eating.
I'm now at my lowest weight for years. My mum said I looked skinny when I came out of hospital on Wednesday. Now, normally I'd be happy with this but as I'm only into chemo #2 I don't want to lose so much that I become too weak. Crikey, it's a vicious circle!
So, what happened with the ambulance and hospital this week. What's the drama queen been up to this time?
Foolishly, in my weakened state I decided it would be a good idea to have a hot bath on Wednesday morning. Normally, I'm a shower kind of girl but baths are supposed to be relaxing. Not so in this case!
The minute I got out I was feeling extremely whoozy, luckily Paul was around as moving from the bathroom into the bedroom I collapsed into a heap on the floor. Paul panicked (understandably) and I don't really remember what happened until he'd got me onto the bed and told me an ambulance was on the way.
The paramedics turned up and took my stats which were all ok apart from my blood pressure being low. I naturally have low blood pressure anyway, but this was even low for me. This is why I'd fainted. They decided it was a good idea to take me to the hospital to get me checked over (again) and make sure there wasn't anything else more sinister going on.
Blood tests, chest x-ray and blood pressure tests later, it was determined that I have high anxiety and blood pressure was on the low side due to lack of food. I know I can't f&%*ing eat, but what can I do?!?! I really am trying, but imagine trying to eat when you feel sick and anxious. A bit like waiting to go for a job interview, that kind of nervous sickness and then actually being sick. Just hideous!
I decided enough was enough and had to see my GP. My GP is a really wonderful doctor and he understands what we've been through the past few months. There is more than this cancer diagnosis that has made me so uptight, but I will explain in a later post.
I explained to him that my anxiety really is beating me down, no matter how much I try to fight and be strong - I just don't have the energy at the moment. What with the blood clot on my picc line and then the allergic reaction that scared the Dickens out of me, I'm scared more of what the chemo can do to me rather than being an actual cancer patient, very odd.
I also told him of the sickness and nausea I've been experiencing so he prescribed me two different types of anti-nausea which should do the trick. Happily, so far today I haven't had any sicky feelings. I've also been prescribed Diazepam to help with my anxiety. I feel a little bit defeated by having to take the pill route to calm my nerves, but whatever works is my motto! I am attending a Macmillan course prior to chemo next week to help manage stress and anxiety, so I hope that this will help me rather than relying on the pill method for too long.
Looking forward to a quieter week until chemo next Friday. I'm going to do nice things and post a nice blog entry about it to show you I'm not really all doom and gloom.
Hayley x
Well, hello to the world of the living.
After the past weekend's escapades, I had another eventful week which involved the following:
Nausea
Vomiting
Not eating
Fatigue
Chest tightness
Fainting
Ambulance
Hospital
Crying
More crying
Sleeping
More sleeping
Anxiety
Buying an iPad 3
Out of those 14 items, guess which was my favourite.
Chemotherapy, to use a cricketing term which my Dad would be proud of; has knocked me for six. I believe this is due to the allergic reaction I had last weekend and the hospital not giving me the correct dosage of steroids, post chemo.
Steroids are supposed to make you feel better and give you an appetite after the infusion for a few days after whilst the drug is still whizzing around in your veins. I was supposed to have 12 tablets spaced over Saturday, Sunday and Monday. I only got 3. I protested to the nurses that these were the doses I was supposed to get, but the drug rounds are random at best.
I am in no way knocking the wonderful nurses, they have a very tough job. I just wished there was some consistency with the care. I really believe that if I'd been giving the correct dose of steroids I would have had less problems this week with eating.
I'm now at my lowest weight for years. My mum said I looked skinny when I came out of hospital on Wednesday. Now, normally I'd be happy with this but as I'm only into chemo #2 I don't want to lose so much that I become too weak. Crikey, it's a vicious circle!
So, what happened with the ambulance and hospital this week. What's the drama queen been up to this time?
Foolishly, in my weakened state I decided it would be a good idea to have a hot bath on Wednesday morning. Normally, I'm a shower kind of girl but baths are supposed to be relaxing. Not so in this case!
The minute I got out I was feeling extremely whoozy, luckily Paul was around as moving from the bathroom into the bedroom I collapsed into a heap on the floor. Paul panicked (understandably) and I don't really remember what happened until he'd got me onto the bed and told me an ambulance was on the way.
The paramedics turned up and took my stats which were all ok apart from my blood pressure being low. I naturally have low blood pressure anyway, but this was even low for me. This is why I'd fainted. They decided it was a good idea to take me to the hospital to get me checked over (again) and make sure there wasn't anything else more sinister going on.
Blood tests, chest x-ray and blood pressure tests later, it was determined that I have high anxiety and blood pressure was on the low side due to lack of food. I know I can't f&%*ing eat, but what can I do?!?! I really am trying, but imagine trying to eat when you feel sick and anxious. A bit like waiting to go for a job interview, that kind of nervous sickness and then actually being sick. Just hideous!
I decided enough was enough and had to see my GP. My GP is a really wonderful doctor and he understands what we've been through the past few months. There is more than this cancer diagnosis that has made me so uptight, but I will explain in a later post.
I explained to him that my anxiety really is beating me down, no matter how much I try to fight and be strong - I just don't have the energy at the moment. What with the blood clot on my picc line and then the allergic reaction that scared the Dickens out of me, I'm scared more of what the chemo can do to me rather than being an actual cancer patient, very odd.
I also told him of the sickness and nausea I've been experiencing so he prescribed me two different types of anti-nausea which should do the trick. Happily, so far today I haven't had any sicky feelings. I've also been prescribed Diazepam to help with my anxiety. I feel a little bit defeated by having to take the pill route to calm my nerves, but whatever works is my motto! I am attending a Macmillan course prior to chemo next week to help manage stress and anxiety, so I hope that this will help me rather than relying on the pill method for too long.
Looking forward to a quieter week until chemo next Friday. I'm going to do nice things and post a nice blog entry about it to show you I'm not really all doom and gloom.
Hayley x
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