Wednesday 29th February
Urgh, food.
I never thought I'd ever say that.
I've always been a lover of food, eating it, cooking it, watching endless hours of cookery shows and collecting vast numbers of recipe books. I fear my love affair with food has come to an end with this cancer diagnosis.
I know it's a necessity to eat, I know that it will keep my strength up through my chemo but almost all food has lost it's appeal now.
I'm really cross about this. The joy of going out to dinner, looking forward to perusing the menu and eating the finished product seems so alien to me now. I hate the fact that cancer has taken this joy away from me. I'm sure and I hope, that it will be a temporary thing.
Truth is, I'm scared to eat some things now, in case it encourages my cancer to return. No more red meat, no more sausages or bacon, absolutely nothing processed, any food with sugar or too much salt is mostly a thing of the past to me. I fear it, I was never a massive eater of these things, but the very thought of having to eat these things now makes me feel sick.
I stare insanely at all the nutritional values of the foods I eat, and if I even think it's got too much of a good (bad) thing in it, I dismiss it and will find something that will be more bland and healthy.
Trying to eat healthily with practically no large bowel presents challenges. I'm eating more fruit, veg, nuts etc than ever before...lots of cancer beating vitamins, minerals and antioxidants...but what does that do? Makes my stomach ache and the inevitable rush to the loo. Can't flaming win!! I was told by the surgeon that my tummy will adapt, but it could take months. Guess I should be more patient, but when you're told that these foods help through chemo, you immediately jump to give your body the best chance. Stupid bowel cancer.
This is all before the cumulative side effects of chemo kick in. I may not get them, but foods tasting different and mouth sores appearing could hinder the urge to eat all the more. I've picked up some useful books relating to this subject from the Macmillan lounge at the hospital and all the advise and recipes look very practical, I will try to follow these but I know it's going to be a struggle.
Crikey, that was a moany blog entry! I'll be more chipper next time.
Chemo #2 this Friday, that means I'm a sixth of the way through. One way to look at it I suppose!
Hayley x
Wednesday 29 February 2012
Saturday 18 February 2012
Chemotherapy #1
I wanted to update the blog earlier, but I've been so busy (and not in a good way) and this is the first opportunity that I've been able to get near the laptop.
So, I've had one chemo session already, only 11 more to go! I started the cycle last Friday morning and I'm thankful to say that the process wasn't as scary as I'd built it up in my mind. Paul and I were taken to a side room to start the process. We were looked after by a very attentive and caring Oncology nurse who explained the whole process of administering my particular regime. No mucking about, she got got straight to work hooking me up to a saline solution to flush my line, then anti-sickness, steroids and anti-diarrhea all to help with the nasty potential side effects of the chemo.
Once these had all been given I started the chemo, Oxaliplatn with Fluorouracil (5FU) and Folonic acid, or FOLFOX for short. This is the special elixir which will stop this disease coming back, it made me feel better to think about it coursing through my body and kicking any stray cancer cells butts. Take that you little sods!
Me with "Johnny 5" from the film Short Circuit:
I must admit, I didn't feel any different while the infusion was taking place. Paul kept asking me if I was ok and I felt fine...again this was a huge relief. I have read some horror stories where people have an immediate reaction to chemo, this is something that I had a huge fear of. As much as I hate having to take this toxic drug, it's there to help me and I didn't want anything to hinder that.
The nurse continued to reassure me and also give me a few tips of advise. The most alarming was the threat of Neutropenia, something of which that is not ideal when on chemo....I've got myself an electric thermometer at my side at all times now. If my temperature rises to 38C, I have to get to the hospital within an hour without any delay and have antibiotics administered. Scary stuff, hopefully I can avoid this through my treatment...could do without that, it could delay treatments.
Two hours later, my infusion was finished and I was unhooked from the pump, but that's not the end of it unfortunately. Part of the Fluorouracil (5FU) treatment is to take it home on a little pump and the infusion will continue for the next 46 hours. As you can see from the photo, it's the size of a baby's bottle, so nothing too large.
Got home on Friday after my first chemotherapy session and was feeling quite pleased with myself. I sat down and Paul got me a cold drink, that's when the first of two side effects to really hit me. I took one sip of it and the water felt like lots of little pins and needles in my mouth and throat, a common side effect called Peripheral Neuropathy. It was a really weird and fairly unpleasant sensation, but thankfully very avoidable. Lukewarm and hot drinks for me from now on! The other side effect I experienced was tiredness, something easily managed by having a good doze! The infusion carried on until Sunday morning and I was very lucky so far to have very minimal effects of my first treatment.
I was happy to arrive at the hospital on Sunday to have the pump removed and the dressing changed, I felt a bit more back to normal without having to carry the pump with me everywhere. I'm sure I'll find a system with it as I have more treatments, but I found the best way to deal with it was to wear cardigans with pockets in them.
So, on with the new week I went with the hope that all I feel is tired until the next chemo round starts on 2nd March. Unfortunately, things are never that simple!
During Monday daytime, I started to develop a heaviness at the top of my chest and into my right shoulder and neck. This got progressively worse on Monday night and my chest was tightening more and more. This was starting to make me panic. The more I panicked and stressed, the worse it got. I wasn't feeling very good at all.
I called the Oncology day unit and they suggested getting an emergency appointment with my GP. This was arranged and off we went to see a Dr who was standing in for my GP who was on holiday that day. I must admit, I did have a little cry in front of the Dr. I was scared, stressed and thought I was on the verge of a heart attack. The Dr checked my obs and I was fine but she did want a blood test to see if I had any signs of blood clots. After blood was taken, I was told to wait in the seating area for 10 minutes whilst the results came through. Unfortunately the results were positive for a blood clot so another trip to the hospital for me.
I took the letter the Dr had given me up to the Medical Assessment Unit and was seen to quite quickly by the team there. I had an ECG which was normal. A chest X-ray, which was normal and another blood test which was also normal. Normal!!! I was starting to think I was going mad and the stress was starting to take it's toll. The Dr didn't think I had any blood clots, but to be on the safe side I was given a course of Clexane to thin the blood and prevent any blood clots forming and was suggested to come in at a later date for a full scan of my lungs in case there is any clots. Great, but I still feel crappy!
Got home that night and my arm with the picc line was starting to get progressively more heavy, swollen and achy but brushed it off as the picc line still being new and irritating my arm slightly.
Tuesday morning, I was in agony with my arm. I phoned the oncology day unit again and this time they suggested I come straight to the day unit so the oncology Dr could take a look at it. The Dr wasn't very happy with the swelling and suggested an ultrasound on my arm. After a short wait at the Vascular department (I think I've visited every department in that hospital now) my arm was scanned and lo and behold, a blood clot was found - wrapping itself right around my picc line.
Great, I thought that was it. Picc line would have to be removed and chemo regime back to the drawing board. We went back to the oncology department, he took one look at the results of the arm scan and said that the line could be left in. Hmm, I wasn't convinced by this plan, however he explained that the blood thinners I was on would prevent any further clots and that my body would eventually reabsorb the clot that was around my picc line. It does mean that I will probably have the blood thinning injections until early September, but I suppose there are worse things!
Today, I've taken the opportunity to have a good sit down and rest after such a hectic two days at the hospital and I'm already feeling better for it. My arm is still swollen but it's not as painful as it was, I'm hoping it's starting to settle down now. Looking forward to my next week of freedom before the chemo #2 starts.
Hayley x
Thursday 16 February 2012
The Final Countdown
Thursday 16th February 2012
So, today was fun! Three appointments, two successes(ish) and one epic fail!
My hospital of choice for all things to do with surgery and treatment is the metropolis that is the Queen Alexandra hospital in Portsmouth. It's a sprawling collection of buildings in which even the keenest traveller would easily get lost.
Appointment #1 10am: Picc line insertion. We were called through by Nurse J very promptly, she called my name out in the Oncology waiting room and immediately looked at me. It was apparent to her that my name suited my age! I suppose that most of the punters waiting were at least twice my age, all called Ethel.
Paul and I were lead into a room which wasn't as depressing as usual. Some fairly middle of the road music playing on what can only be described as a CD player that I was bought for my 13th birthday. Yes, that old.
Nurse J was lovely, a very calming influence in what is a very unnatural situation. I was asked the standard questions (Name, DOB, home address etc) then was asked to lay on a bed with a pillow under my right arm.
I was explained all the various risks of Picc lines and the nurse gowned up and placed the doppler on my arm to find a vein. This is when my veins do the usual trick of legging it right away from any potential needle coming it's way. I'm not scared of needles, not at all. Seen too many of them to bother me anymore, but my veins had other ideas. The nurse proceeded to numb my arm with a solution and carefully inserted the needle and rod in an attempt to get the line in as quickly as possible. It wasn't happening. My vein had decided it was being "bouncy" and not letting the line in very far. It sounds worse than it felt. Nurse J gave up with this and tried the ultrasound on my left arm. No go either. Apparently all my veins like to sit close to the arteries, the nurse didn't fancy getting covered in arterial blood today so called it quits and said I would need to be referred onto the x-ray department. Magical dyes and special machines make it easier to get the blighter in so I will have to wait until tomorrow, 8.30am to be precise.
Feeling a bit like a failure, we sat in the Macmillan waiting area and were kindly offered tea and biscuits. Macmillan really is an amazing charity. The atmosphere in the waiting area was anything but gloomy. Lots of people laughing, chatting and generally "getting on with it". We were made to feel very welcome. It was a calming place to wait for my next appointment.
Appointment #2 12pm (turned into 1pm): Called through to see my Oncologist, Dr B. Now, Dr B is quite the charming character, always looks mostly flustered when wandering the corridors of Oncology, always late for something. As soon as you are sat down with him in the consulting room, an air of pure confidence fills the room. It's nice to feel at ease.
It was only a 15 minute appointment, the main topic being that my treatment plan has been slightly tweaked. Now I'll be doing 3 months (6 cycles) of chemo, 5 weeks of radiotherapy (5 days a week) then another 3 months (6 cycles) of chemo. My chemotherapy regime will be every two weeks. Two hour infusion of Oxaliplatin every Friday combined with 5FU over a 46 hour infusion that I can take home on a pump. Seven months in total! I'm really happy with this new treatment regime, it seems to make a lot of sense.
When I met my surgeon 2 weeks ago, he said he would be talking to Dr B regarding monoclonal antibody treatment. When I brought this up with Dr B, he seemed quite irked. It went something like, "I don't tell the surgeons how to operate, so I don't expect them to tell me how to treat my patients. There is no evidence this benefits patients with Stage 3"....ooooh, I only asked! But he does have a fair point...nobody likes to be told how to do their job, especially if they're the expert!
Other than discussing what drugs I will be taking to lessen the side effects that was my meeting with Dr B done for another 2 weeks.
Appointment #3 2.45pm: Flexible Sigmoidoscopy *groan* - let's save the best appointment until last. So if you click on the link that will tell you what a Sigmoidoscopy is. It's not pleasant, but absolutely necessary for people like me, every year - probably for the rest of my life. After gowning up and being lead into a mini theatre I was asked the usual questions to confirm that I am who I say I am. Why anyone would want to do this as a laugh is beyond me!
The Dr was as gentle as he could be with me, but without any sedation or gas and air, it's a very uncomfortable process. I'm not going to lie. Please don't let this put you off however, it's pretty much like having a lovely manicure compared with 7 hours of surgery. It's also a life saver as it can catch anything untoward in a very early state.
I can't really describe what it's like to watch your colon on a big screen. It's the crappiest(!) film I've ever seen, director was all over the place!
The procedure took 20 minutes and what made that 20 minutes very worthwhile is that the Dr found 3 more polyps. Each one was a tiny 2mm diameter but he suspected they were benign, snipped them off and sent them away for histology - this is why screening is so important. Something so harmless can be snipped away before it turns into something extremely sinister.
Thankfully, that was the end of the day for me at the hospital. Back again tomorrow at 8.30....this is when it all really kicks off!
Hayley x
So, today was fun! Three appointments, two successes(ish) and one epic fail!
My hospital of choice for all things to do with surgery and treatment is the metropolis that is the Queen Alexandra hospital in Portsmouth. It's a sprawling collection of buildings in which even the keenest traveller would easily get lost.
Appointment #1 10am: Picc line insertion. We were called through by Nurse J very promptly, she called my name out in the Oncology waiting room and immediately looked at me. It was apparent to her that my name suited my age! I suppose that most of the punters waiting were at least twice my age, all called Ethel.
Paul and I were lead into a room which wasn't as depressing as usual. Some fairly middle of the road music playing on what can only be described as a CD player that I was bought for my 13th birthday. Yes, that old.
Nurse J was lovely, a very calming influence in what is a very unnatural situation. I was asked the standard questions (Name, DOB, home address etc) then was asked to lay on a bed with a pillow under my right arm.
I was explained all the various risks of Picc lines and the nurse gowned up and placed the doppler on my arm to find a vein. This is when my veins do the usual trick of legging it right away from any potential needle coming it's way. I'm not scared of needles, not at all. Seen too many of them to bother me anymore, but my veins had other ideas. The nurse proceeded to numb my arm with a solution and carefully inserted the needle and rod in an attempt to get the line in as quickly as possible. It wasn't happening. My vein had decided it was being "bouncy" and not letting the line in very far. It sounds worse than it felt. Nurse J gave up with this and tried the ultrasound on my left arm. No go either. Apparently all my veins like to sit close to the arteries, the nurse didn't fancy getting covered in arterial blood today so called it quits and said I would need to be referred onto the x-ray department. Magical dyes and special machines make it easier to get the blighter in so I will have to wait until tomorrow, 8.30am to be precise.
Feeling a bit like a failure, we sat in the Macmillan waiting area and were kindly offered tea and biscuits. Macmillan really is an amazing charity. The atmosphere in the waiting area was anything but gloomy. Lots of people laughing, chatting and generally "getting on with it". We were made to feel very welcome. It was a calming place to wait for my next appointment.
Appointment #2 12pm (turned into 1pm): Called through to see my Oncologist, Dr B. Now, Dr B is quite the charming character, always looks mostly flustered when wandering the corridors of Oncology, always late for something. As soon as you are sat down with him in the consulting room, an air of pure confidence fills the room. It's nice to feel at ease.
It was only a 15 minute appointment, the main topic being that my treatment plan has been slightly tweaked. Now I'll be doing 3 months (6 cycles) of chemo, 5 weeks of radiotherapy (5 days a week) then another 3 months (6 cycles) of chemo. My chemotherapy regime will be every two weeks. Two hour infusion of Oxaliplatin every Friday combined with 5FU over a 46 hour infusion that I can take home on a pump. Seven months in total! I'm really happy with this new treatment regime, it seems to make a lot of sense.
When I met my surgeon 2 weeks ago, he said he would be talking to Dr B regarding monoclonal antibody treatment. When I brought this up with Dr B, he seemed quite irked. It went something like, "I don't tell the surgeons how to operate, so I don't expect them to tell me how to treat my patients. There is no evidence this benefits patients with Stage 3"....ooooh, I only asked! But he does have a fair point...nobody likes to be told how to do their job, especially if they're the expert!
Other than discussing what drugs I will be taking to lessen the side effects that was my meeting with Dr B done for another 2 weeks.
Appointment #3 2.45pm: Flexible Sigmoidoscopy *groan* - let's save the best appointment until last. So if you click on the link that will tell you what a Sigmoidoscopy is. It's not pleasant, but absolutely necessary for people like me, every year - probably for the rest of my life. After gowning up and being lead into a mini theatre I was asked the usual questions to confirm that I am who I say I am. Why anyone would want to do this as a laugh is beyond me!
The Dr was as gentle as he could be with me, but without any sedation or gas and air, it's a very uncomfortable process. I'm not going to lie. Please don't let this put you off however, it's pretty much like having a lovely manicure compared with 7 hours of surgery. It's also a life saver as it can catch anything untoward in a very early state.
I can't really describe what it's like to watch your colon on a big screen. It's the crappiest(!) film I've ever seen, director was all over the place!
The procedure took 20 minutes and what made that 20 minutes very worthwhile is that the Dr found 3 more polyps. Each one was a tiny 2mm diameter but he suspected they were benign, snipped them off and sent them away for histology - this is why screening is so important. Something so harmless can be snipped away before it turns into something extremely sinister.
Thankfully, that was the end of the day for me at the hospital. Back again tomorrow at 8.30....this is when it all really kicks off!
Hayley x
Tuesday 14 February 2012
Beginnings
Tuesday 14th February 2012
Hello dear reader
I've decided to document the next six months or so of my life. I believe it will help me and hopefully you, understand what life is like with Cancer and the treatments required to knock it on it's vile head.
My name is Hayley and I'm 32. I have stage 3 Colon Cancer (yes it happens at my age). However this isn't what defines me, hopefully that will become more apparent as the blog progresses.
I will document over the up and coming blogs how I came to this part of my life and hopefully make it informative and dare I say it, entertaining(!)
This will be a truthful account of what's happened thus far and what is yet to come, not too graphic, but not pulling any punches either. If you're one of those types who can't stomach some of the less glamorous parts of life, I would suggest not bothering to read this. I'm fine with that.
Will post more in-depth musings over the coming days and weeks. I'm nervous and excited about what this year holds for me, but I'm ever hopeful.
Hayley x
- Posted using BlogPress from my iPhone
Hello dear reader
I've decided to document the next six months or so of my life. I believe it will help me and hopefully you, understand what life is like with Cancer and the treatments required to knock it on it's vile head.
My name is Hayley and I'm 32. I have stage 3 Colon Cancer (yes it happens at my age). However this isn't what defines me, hopefully that will become more apparent as the blog progresses.
I will document over the up and coming blogs how I came to this part of my life and hopefully make it informative and dare I say it, entertaining(!)
This will be a truthful account of what's happened thus far and what is yet to come, not too graphic, but not pulling any punches either. If you're one of those types who can't stomach some of the less glamorous parts of life, I would suggest not bothering to read this. I'm fine with that.
Will post more in-depth musings over the coming days and weeks. I'm nervous and excited about what this year holds for me, but I'm ever hopeful.
Hayley x
- Posted using BlogPress from my iPhone
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