Tales of the Unexpected

Sometimes in life, and I say this as a 30 year old myeloma sufferer, things do not go as planned. Apart from the original diagnosis, the early side effects, the setbacks,  the tumour and the relapse, My Myeloma has become  quite predictable. Once I have been told a medical plan, I can, with a teeny amount of confidence, know what to expect. 

It was a similar experience coming in to this transplant. I planned, I prepared and I purchased pyjamas; all in anticipation of this transplant running a similar, if not worse, course to the previous one. I told myself it could be different, but only in my assumption that it would be worse, than my memory had imagined, and that was only so I could take the pain if it was. It was a theme that I also hoped would dull the competitive feelings I had towards beating all the negatives of my last transplant. A transplant that saw me go home on Day +16, after being hospitalised on Day +4. What happened in the middle does not count.

Ahead of the first transplant, I was given a whole heap of reading materials telling me what my transplant was going to be like. I chose not to get it and read it all over again this time around, for I had remembered the side effects well enough. Plus, I knew a Medically Trained Person was going to talk me, face to face, through the process and it’s side effects before I could be  prescribed the Megatron. 

Mouth ulcers, diarrhoea, fatigue, nausea, hair loss, temperature, infection and hospitalisation. To me, those side effects were nothing but definite. In my transplant daydreams, I can confirm that said infection was never more severe than the one dose of antibiotics realm (well, when I was not being weak willed). 

It was just a case of waiting for them to start.

Today is Day +11. I feel sick, liquids  and my limited solids intake are followed by many a beefy burp, my hair is falling out, I am constipated, I sleep for 12-16 hours a day and I am able to be comfortable and functioning out of my bedroom for up to one hour each day. I have felt this way since Day + 2. My mouth no longer feels like I have bathed it in sour milk, but on the other hand, I have not deposited anything since Friday afternoon. I did wake up multiple times during the night and this morning experiencing something new, and that new was a little blue, in the form of significant lower back pain. So bad in fact, was said pain, that two hours after waking I was convinced my kidneys were failing. It transpired that the pain is caused by the injection I have had to have everyday since Wednesday. 

From the list above, there is one key and inevitable component missing. It has beds in it, lots of Medically Trained People, too few lifts, a mediocre canteen and views of London other buildings would make you pay for. It’s the hospital. I am not yet in hospital. In addition to this absence, I have also come nowhere near soiling my pants.

The question that has been plaguing me since around Day + 7, is, at what point is it realistic for me to stop waiting for the bad things happen and start planning my discharge? Then, in having asked that question, have I jinxed any chance I have of remaining poo and infection free for the rest of this transplant experience? Actually, have I already asked for the quick and severe enslaught of illness, when I sent an email to my friends at the weekend,  suggesting that there was a small chance that I will not go into hospital, and thus, I needed volunteers to sleep next to me in the hotel this week? 

I have many more questions. I asked the Medically Trained People whether I should be worried about not going in to the hospital yet. Mamma Jones asked whether this would have an impact on the success of the transplant. I asked if it would prolong my overall stay. We haven’t had any comprehensive answers to these questions. On Friday, during rounds, I was told that with everyday I am out in Ambulatory Care, I am a day closer to going home. At the time, I was placated, but with hindsight, that answer is something of a misnomer, for that statement  would also be true were I in hospital. 

I cannot get an answer from anybody. At least, I cannot get one to satisfy me.

My White Blood Count has been rising for the last three days, not to dizzying (or should I say dizzy-less) heights*, but rising all the same. I asked if this meant I was improving. Words were said, but they did not create an answer. I was told that the doctors will look at my neutrophil count, which had been flat for five days. Flat by the way is just a fancy way of saying ‘zero’. Apparently, people are usually flat for ten days. STOP THE PRESS: I just had to go and pick up some emergency morphine from the clinic, and I found out that today’s neutrophil count is 0.49. With regards to pooping green and going into hospital over simply going home, what the devil does this mean? 

This morning I was told that if I were to get a temperature, it would most likely happen today or tomorrow. What does this mean? Six other people had transplants on the same day as me or on the day before and I wager that they have all seen 38 degrees Celsius by now.

I do not trust any of this. According to the nhs.uk, 70% of stem cell transplants experience mucositis, either oral, gastrointestinal, or both. I had no idea there was a magical 30% to whom the colour green, when it comes to the human body, will only ever apply to eyes. Am I in this 30%? Does the 30% include people who have been given Melphalan? Does it? 

In all my planning, not being admitted to hospital was never an option. Over the last week, I have discovered that on very rare occasions, it does happen. With every day that passes, these people become bigger than the Loch Ness Monster to me. Bigger because I do not aspire to be the Loch Ness Monster.

My biggest worry? How reasonable and how healthy is it for me to hope that I can be bigger than the Loch Ness Monster? I do not cope well with disappointment and right now, because I have done nothing but wait and hypothesise, with so many questions unanswered, I have no idea which thoughts and what hopes are realistic. I need to know. If I knew, I could plan. If I knew, I could manage. If I knew, I could stop myself from thinking I am a failure if I ended up getting a temperature or the squits this late in the game. 

It may sound like I have been enjoying  some sort of Freeview only retreat for the last 12 days, but let us not kid ourselves, I am not well. Not being in the Tower is misleading, it’s misleading because thus far I have avoided infections and pain; I did not avoid the transplant. It’s easy to forget that my body is going through quite an ordeal. It can even be misleading to me, it’s misleading because getting dressed, wearing day clothes and walking 160 metres to and from the clinic each day, no matter how much I struggle to do it, makes me temporarily forget that my body is experiencing an ordeal. 

Every other day, I end up getting so tired by talking to a friend for an hour on top of the 20 minutes of observations, that I am forced to sleep for three hours afterwards. A sleep that comes only after I express my shock and question why I feel so poorly. On the days around it, I just sleep. When I am not sleeping, I am waking up with anxiety or from anxiety based dreams. When I am not sleeping, or experiencing anxiety, I try to watch the television. It would be fair to say that I struggle to follow the plot… When I am not doing any of those things, I attempt to hold conversations and believe you, me when I say that, ‘attempt’ is the operative word. 

Fatigue is not just about the tiredness. This whole process; the waiting, the questions and the process is exhausting. Plain and simple.

Who knows how long this will all continue? 

EJB x

* I think that was a blood joke, I have no idea if it works, I’ve taken some morphine.

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2 thoughts on “Tales of the Unexpected

  1. Tj13 says:

    It’s hard to not want to control things but you just have to let things happen. As we all know with Myeloma it never seems to be what you expect. Hope you get home soon &Astarte to feel better.

  2. alexbicknell says:

    “I have also come nowhere near soiling my pants.”
    Which is all any of us can hope for. Long may it continue!

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