Today I was back in Nottingham for a support meeting ahead of my Stem Cell implantation scheduled for the week of 23rd October.
This meeting held at Maggie’s Centre on the Hospital Campus was aimed at informing the process to come and consider the after care. Patients and their families were encouraged to come and so Anita accompanied me, having got the time off work.
The session was broken down into three parts.
Part 1 – Psychology
The psychologist spoke about the cycle of adaptation to change and encouraged us to be honest with our feelings; to confine worry to specified 5min slots twice a day and to relegate all worries to these slots when they arise in the day; to follow these spots with something positive; to adopt breathing exercises; take physical exercise; provide stimulating activities for those long periods of isolation.
Part 2- Practical
The Macmillan nurses talked through the procedure. A phone call to be made to the ward to determine bed availability from 23rd onwards. Given my distance from Nottingham, slightly more notice to be given. I will be in a private ward, in isolation and will be given a chemotherapy drug. I will initially feel well and need to keep myself occupied- there is free WI-Fi and I should bring music, computer, audiobooks etc. The following day I will be given my stem cells back over a short time period. This is likely to induce nausea and diarrhoea as well as a sore mouth. I will be in hospital for two to three weeks and will be monitored as my immune system reboots. Visitors will be allowed but only if germ free. After three weeks or so I will be allowed home but it will take 3 months to feel normal. There is no need for a neutropenic diet (considered irrelevant), just avoid soft cheeses, live yoghurts etc. During this time I should be careful of large crowds, not necessarily avoiding them but taking care e.g. avoid close contact especially people with colds. So church will be an option but with precautions, perhaps not the Christmas services though! Supermarkets OK, but outside of busy times. Directly following hospital it will be better for me to be in Lincoln where my treatment started and currently have my GP, but after a further two weeks or so could return to MK, in late November/ early December depending on progress. Driving will be OK, but it was suggested that in the first couple of weeks I be chauffeured. This may again depend on how I feel. Avoid public transport. Of course the unknown factor in all this is my kidney.
Part 3 – Physiotherapy
The physiotherapist talked about exercise regimes both during and after hospital. Generally keeping active as possible will aid recovery, providing a positive state of mind and keeping lungs free of infection as well as keeping muscles supple. Getting out of bed for meals, doing simple foot and leg exercises, breathing exercises for fitness (different to psychology). Once out of hospital, taking short walks and slowly extending baseline (walks that can be done regardless of health) on good days. Above all don’t push things too fast. It will take time to recover.
In terms of a return to work this may not be for five to six months (i.e. a year after I stopped work!)