Emma B
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More difficult times - Part 1 ... Back in hospital

Emma B
Posted by
14 Oct 2016

Vincristine and now Vinblastine don’t agree with me, so it's another hospital stay.

I feel this blog needs a warning for anyone who feels uncomfortable reading about bowels and toilet activity.  Pre-leukaemia Emma wouldn’t dream of sharing such information, but you sort of get desensitised to it when you’re discussing them on a regular basis with various nurses and doctors.  It’s also strange when it becomes a measure of happiness when your bowels are working exactly as they should be.  I hope I go back to my old discrete ways when all this is over, otherwise I might get a name for myself.


So although it’s not a pleasant subject, this was one of my worst experiences and I think it’s quite a common thing with the treatment so thought it was useful to write about it.  I was told that chemotherapy and the associated medication can either slow your digestive system down, causing constipation or speed it up, causing diarrhea.  So far, mine has decided to go slow.  Some of the drugs will also affect the nerves in your abdomen affecting your digestive system.


As part of my treatment plan, my consultant had replaced Vincristine with Vinblastine because I had peripheral neuropathy in my feet, caused by the Vincristine so we didn’t want to risk making it worse.  Vinblastine is a synthetic version of the plant-derived vincristine and it can have those side effects but  it’s less likely.  Vincristine can also cause severe constipation which, whilst I wasn’t really aware of it at the time, was also a cause of my first infection.


I’d only just started this cycle when I got a nasty throat infection and around the same time I was aware that I hadn’t had a bowel movement for two days.  Due to the problems I’ve had, I’ve learned to pay close attention to my toilet habits so that I know what is out of the ordinary.  I’’d been prescribed some Nystatin for my mouth but by Saturday afternoon, I could barely eat or drink anything and I knew I hadn’t enough fluids.  I also still hadn’t been to the toilet.  I knew I had to call the ward for advice and sure enough they wanted me in.


After a review by the doctor, I was given fluid initially and they started to work on pain relief and diagnosis.  It’s such an awful feeling when you can’t eat anything and when nothing is coming out of the other end either.  I had abdominal swelling and issues with cramps, etc.. since my surgery and whilst I could see some improvement, my abdomen still hadn’t completely healed.  The whole area now felt like a bowling ball.  I had images of it bursting open and tiny bits of me flying all over the room.  It felt under so much pressure that I couldn’t get comfortable, coupled with the pain in my mouth.  Rotten doesn’t even begin to describe how I felt.


My consultant came to see me on the ward and said one word, Vinblastine.  The drug can in some cases cause severe constipation and stop bowel movement completely. As I currently had neutrophils (but wouldn’t soon) he prescribed a suppository to try to help the situation.  This hadn’t worked by Monday, it was now five days since a bowel movement and I was neutropenic so suppositories and enemas were out of the question.  I didn’t think I would ever be sad that I couldn’t have a suppositry or an enema.  Who is this person?!


As I also hadn’t eaten for 48 hours, the doctor enlisted the help of the palliative care nurse and doctor to help to manage the pain and they came to see me to discuss some options.  They were fantastic and came up with a load of ideas of both for medication and some diet ideas to help me.  The sores were so far back in my mouth that was the reason I was struggling to swallow anything.  They came to see me daily to see how I was getting on.  This is something that has amazed me with the NHS care I’ve received, everyone rallies around to help.  There is a ‘never give up’ mentality even if it’s just to manage pain while they wait for your neutrophils to rise and do their thing.


I know this probably sounds like quite trivia stuff, mouth pain and severe constipation, and if it wasn’t me experiencing it I would probably scoff and say “c’mon man up!!”, but I can’t explain how much pain and desperation I felt.  It was all consuming and when my family came to visit me, I couldn’t even concentrate on them, only on the pain in my mouth and tummy.  I became really irritable and realised I was so distracted, I had developed the attention span of a 2 year old on Christmas morning.  They were great though and still came to see me and leave me alone when I needed it.


I was prescribed a slow release morphine tablet and up to hourly morphine injections, as well as the usual paracetamol.  I also had GelClair and Caphosol mouth rinses to try, Difflam spray, Lidocaine lollies.  You name it, I had it!  The thing that was most effective for my mouth was icepops (and they were Disney) - success!


For my bowels, I was prescribed a super strength laxative.  It came in a syringe and tasted like Mango.  I had such high hopes for it, I was on and off the toilet 20 times an hour, but it wasn’t a fast worker and it was a week now with nothing.  I was also encouraged to try figs and prunes and as I hadn’t been able to eat for a while, liquid supplements to get some goodness into me.


I felt so desperate during this stay and didn’t know what I could do to help myself.  The morphine injections I was given made me have really vivid dreams and I had one where I was back in ICU and I knew I was asleep but I couldn’t wake myself up, I wanted to leave but my phone wouldn’t work and I was being held down on the bed by a big bear.  I think I still had a fear of ICU and that I would become so poorly that I’d end up there again.


I’d been in hospital five days now and my mouth finally started to clear up around my throat and the sores were now just on the bottom, which I could manage it by using the mountain of pain relief options I’d been given and I was able to have some real food (a child’s pasta bolognese ready meal - but it was delicious!) and I was able to drink a movicol.


After ten days, we had a toilet success and I rang the bell just to tell the nurses the news!  I had promised them a high five when it finally happened and whilst I don’t suppose they were really that bothered, they humoured me.  I was still in some pain though, but I think it was my body processing all of the crazy things we’d been trying over the last couple of days - I hadn’t half put my digestive organs under some pressure.


I was in hospital for another couple of days and then I was discharged with two carrier bags of goodies to help me at home.  The palliative care nurse came to see me and chatted for a bit about my journey so far and how I was feeling.  She was really easy to talk to and I still see her around the hospital and we stop for a quick hello or a chat.


When I left hospital I was a stone lighter again, it was lucky I’d put the weight that I’d lost back on.  Although I felt better, as I mentioned earlier this experience was really difficult for me and I think I still had some things to reflect on.


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