Puke Fest

It’s been a while since I’ve blogged. Apologies for that. We are all living through such strange times. 

When I last wrote I was an inpatient. I was in that tiny room for nearly 3 weeks. It was so lovely to get home. Often it’s the little things that make a difference. For example being able to pee in peace and not have to do it in a jug and measure it and write it down. In my experience haematology wards are obsessed with all bodily functions not just blood. Lol

I was quite weak and wobbly when I got home but delighted to be there. 

One of the changes the consultant made before I left was to stop my imatinib (chemo tablet) This change stopped the throwing up immediately. I was relieved on one hand because throwing up is not nice, but I was also concerned because I feel the GvHD (graft verses host disease)  was getting worse. 

I had a good first week at home just getting some of my strength back in my legs by walking up and down my hall. It’s very hard to keep your legs moving in those small rooms. These days my legs are so weak and I certainly don’t want them to get any worse. 

I went back to outpatients after a week. I needed to have my IVIG infusion (immunoglobulin therapy) I was intrigued to find out how my electrolytes were doing as they were being replaced virtually daily when I was in. I was amazed to learn they were all in the normal ranges. Oh my days. The consultant says she thinks it was the imatinib. I was well happy about that. I was sent home and told to come back in a month and have telephone or email contact in between if needed. 

Before I left I had a long session with the dietician. Katie wanted me to increase the amount of protein in my diet. Alongside being assured by me that I would increase my intake of protein, Katie also wanted me to try a protein supplement. It came in the form of Jelly or a drink. The jelly was really sweet and unpleasant in its consistency. I knew I needed to keep going with it though and managed the 4 jellies by only having half each time. Then I tried the drinks. These were meant to go in my PEG-J tube so that I didn’t have to taste them. I poured one out only to discover it was very thick and sticky and not something that could go down my PEG. I’ll have to get in touch and explain. I think Katie will be disappointed. 

The other thing Katie wanted me to try was a 12 week probiotic course with a certain product. The liquid could go in the PEG this time as it was water based and wouldn’t clog the tube. It smelt foul. 70 mls was to be taken in the morning on an empty stomach. I did this and then got on with my locked in day of chatting to neighbours and FaceTiming family. That night in bed I started getting really bad reflux which tasted of the medicine. I kept trying to prop myself up. Then I was woken up on 4 separate occasions to sit on the loo. Not very nice when you are really tired and meant to be in bed sleeping. The next morning I started to projectile vomit. It was so violent that it splashed back on me and covered me. I had to call Maggie to help me whereas I would usually deal with these sort of things on my own. I carried on being sick all day. It got to the point that I couldn’t even hold an ice cube down. I felt dreadful. I had a headache and a slight temperature. Poor old Maggie was really worried about me and kept coming up and emptying my sick bowl as in the end I had no strength to get to the loo. 

That night I managed to sleep despite having spent the day asleep in between throwing up. The next morning I felt better although drained by the previous 24hours. I managed to get up but that was about it. I couldn’t even manage to get dressed. 

The next day I started to feel human again. I was able to eat and drink a bit more and get my medication in easier. I still felt rung out and shaky but so much better than before. Maggie did some research on the product I had taken and it seems that some people do react like me. There were of course many people it had really helped but regularly dotted along with all the positive reviews were individuals who had really horrible reactions to it. 

Oh dear! I hate having to go back to Katie and needing to tell her that neither of her bright ideas have worked. She is a great person to work with and really thinks outside the box. I hate having to disappoint her. I’m always willing to try new things or new medications/treatments but sometime the “cure” is worse than the condition. 

Before this horrible reaction I had a telephone consultation with a new member of the haematology team. He is a psychiatrist and he joins a couple of psychotherapists to extend and enhance the care delivered by this much needed aspect of the service. 

I am someone who really believes in counselling and talking through your issues. I think well-being and quality of life issues for long term sufferers of cancer and it’s treatments are vital and I would encourage anyone to engage and accept help if it’s offered. You have to be strong to admit your vulnerabilities. It’s definitely not a sign of weakness. 

In my case what has happened is that someone, maybe who doesn’t know me so well, has wanted a psychological evaluation to see if that is playing a part with my gastric problems. The fact that I never had these problems before the transplant seems to have been lost along the way. I could’ve been defensive in my response but that wouldn’t be right. I was happy to be assessed because I’ve leaned that medics need to tick all the boxes when looking at complex situations where there aren’t any easy answers. 

Greg was a nice bloke and we had a good chat on the phone about all sorts and he concluded something which I’d worked out years ago and that is that I have a very low tolerance for being sick. That I am sensitive and thats how my body reacts. 

I’m pleased we had that conversation and it’s conclusion before I tried the new product for Katie. All of this can actually sometimes make you doubt yourself. It can also lead to feeling judged and not understood. That’s when it’s really good to have an objective opinion form wise people like Greg and Phil to help to get to the roots of what’s going on. 

My problem is where does it leave me? It’s like I’ve reached the limit of being messed around with. The last two medications and this food product have all made me sick. I’ve been on similar medication for many years and not reacted.  Why is my body now deciding to reject these latest treatments? Will I be able to tolerate any other treatments or is this as good as it gets? These are big questions. I wish I had a magic wand and could fix it. Instead I just have to grit my teeth and keep going. I have to focus on all the amazing and wonderful things I have in my life. I count my blessings that I’m still breathing and defying the odds. I’m happy to be part of my grandchildren’s life. 

One of my recent posts had pictures of how hard life has been and how challenging it’s been getting through so many bouts of sepsis and everything  else. The pictures attached to this blog show many of the things I’ve done since being diagnosed. Life doesn’t stop at diagnoses. All of us have to make alterations as we get older. Those of us that develop a serious illness end up doing this earlier and in a more compact way. 

I hope the pictures give you the courage to really live until you die not just exist. I can’t wait for lockdown to be over and for me to be able to get up to some mischief. One of the things I fancy is doing the longest and fastest zip wire ride. You lie in it facing forward, a bit like superman. It’s about a mile long over an old quarry in Wales. 

Whatever it is that you have your sights on, I hope they come your way soon. If not and things are getting tough, don’t be afraid to ask for help. Isolated and shielded doesn’t have to mean disconnected.