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:

• 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

If you have any of these symptoms, you must see your GP as soon as possible.  It probably isn't bowel cancer but better to be safe than to take a chance.  95% of the earliest stage of bowel cancer is curable, I'm at stage 3 - more difficult to treat but still curable.  There is no need to be embarrassed, it is better to get these things checked now than wait until it is too late.  I'm telling you that surgery and chemotherapy is no fun and I'd rather you didn't ever have to go through it.

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

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

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