Myeloma transplant - Planning

My myeloma stem cell transplants have been very demanding, physically and emotionally.
As explained in my pre-transplant planning posting I spoke to other transplant patients, read about transplants extensively and obtained the transplant protocol and procedures from the BMTU team. No surprises, I wanted to stack all the odds in my favour so I could enter the BMTU full of confidence and knowledge.
It was anticipated that I would spend up to 3 weeks in the BMTU, I was in for 25 days. A 4 day fever and problems with the catheter removal delayed discharge.
Myra does not drive so I requested that I stay at the hospital and not go home during the early stages.
When I moved into the BMTU it was to be home for the next 3 weeks or thereabouts so I quickly became familiar with the unit, room and facilities before the “wipe out” days commence, then it would be too late. This includes the bathroom and the communal kitchen. It’s different to home. I set up the TV, DVD, CD, and radio for my own use, TV and radio was to be my contact with the outside world. How did they work, tried them all out, how does the remote control function. There was an internet connection but I did not have a laptop so passed on that.
What’s in the kitchen? Is there a toaster, microwave or fridge? How can I make a cup of coffee or tea? What food is free? Where do I store my food? How do I label it?
I was told as my white counts dropped I would became fatigued and sleep more than usual. Sudoku is a favourite pastime of mine but a few days after the fatigue started the Sudoku stopped so it was mental fatigue as well as physical. There was an improvement about day 18 when Sudoku recommenced but it wasn’t until I had been home for two weeks that I could notice a good improvement. A few books and magazines came with me but suffered the same fate as Sudoku.
As I did not know what my condition would be during transplant I chose not to have visitors or incoming phone calls except family and a few invited friends. I wasn’t there to get my toenails cut, I wasn’t there to entertain people, it’s my illness, my treatment, and I wanted to focus on me. It was a time to be selfish.
I was advised to take one day at a time during transplant, good advice that I recommend. I often split my time into morning, afternoon, evening. When the going got tough that became one hour at a time.
Myra happily took on the task of contact person phoning and emailing others of my progress. A small network passed this on from her information. Family, friends and neighbours were told what was happening prior to my admission and who to contact for information. It worked well for me though a people person or an extrovert may choose to do it differently. The only downside was I found the evenings a bit lonely.
Physically I had maintained my exercise routine and continued walking up to admission day. The hospital physio had prepared a programme to use during my stay to limit the loss of condition.
Myra had prepared food, laundry, communications and home matters.
The dietician had briefed us on suitable food and drinks.
My personal items: soap, shampoo, moisturiser, lip balm had been purchased new, mild and non-perfumed as requested by the BMTU nurse.

The planning worked well, only two surprises.
First was a four day fever with one day being a wipe out when I was fatigued to the max barely able to support myself.
Second was my catheter removal, that was a drama. Normally the nurse would remove it by pulling it out by hand. Unfortunately my skin had adhered to the plastic tube requiring a surgeon to surgically remove it delaying my discharge for two days.
Diarrhoea was worse and continued longer than anticipated.
My mouth and throat were better than anticipated mainly due to my strict mouth wash routine.

This is one of “part 2” a series of postings relating to my autologous stem cell transplant for myeloma. As they are complete the posting series can be found under labels/part 2 [Part 2 link]

Glossary:
BMTU: Bone marrow transplant unit.