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
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