This is a waiting time.
Last week (1st September onwards) I did not wait very well … in fact I waited really really badly.
I waited impatiently for the post to arrive, and for the phone to ring, and (to use a lovely old word) was disgruntled when there was no news from hospital.
Note: ‘disgruntled’ comes from the old English word ‘gruntle’ which means ‘to grunt’. So disgruntled means to grunt with grumpiness.
That has changed this week!
Positivity has returned, I’m no longer disgruntled 🙂
I’ve decided to enjoy the moment, right now, and not think about hospital dates, and hospital communications.
It’s working. I love it!
I have thought about the transplant process, and preparation for weeks in hospital.
In fact I’ve been using social media to find out what others recomend taking to hospital, to ease the weeks in bed.
Some of the answers were a bit disturbing.
Here are some of the recommendations …
Fleecy blanket, audio books, toilet wipes, baby wipes and soft loo roll, adult nappies 😮 (not all hospitals supply them), slippers, dressing gown, bed socks, soft toothbrush, chargers, headphones, own mug, eye mask, disposable pants !, old underwear!!, a warm hoody (because of air conditioning), satsumas, moist toilet tissue,
and there’s more ……
I’ve also had a really pleasant time with visits from friends, and painting worms ….. pottery worms🙂
It’s a form of occupational therapy, I think.
Here’s a picture of some of my ‘work’.
I’ll make a self-portrait version, so you’ll now what I look like 🙂
As part of my preparation I’ve been checking details of the key Stem Cell Transplant (SCT) drug that will be used.
It’s called Melphalan, and it has some quite challenging (potential) side effects, which include:
Increased risk of infection … due to a drop in white blood cells. This worries me, because of the risk of Sepsis
Breathlessness and looking pale … due to a drop in red blood cells (anaemia)
Bruising and bleeding … due to a drop in the number of platelets
Diarrhoea … Worrying, when feeling weak, and having difficulty moving!
Mouth sores and ulcers … making it difficult to eat and swallow
Hair loss possibly all hair, everywhere! It may grow back a different colour or be curlier!!
Muscle problems … achy, painful making movement uncomfortable
Well, apart from that lot, it should all be straightforward 😊
I really do try to know as much as I can about any new experience before it happens to me. So that I can manage my risks.
But sometimes I wish that I could ‘unknow‘ things that I’ve learnt.
Here’s a guide to what’s coming at transplant time …
For me, Stem Cell Transplant is a lifeboat – and I’m going to jump on board enthusiastically 🙂. I’ve surveyed options, and while no SCT is OK, SCT is better🤞
I may be wrong, but I think that if I loose a little weight, the 280 million Stem Cells/kg, that I have, will become slightly more effective.
So, without being silly, I’m going to gently loose a bit, whilst still eating good health food, and exercising. And that IS happening 🙂
