I am being discharged today from Leicester after about 5 or 6 days. Was going to the loo a lot and didn’t feel well. I was put in a side room in case I was infectious and pumped with the usual precautionary antibiotics.
I was sent for an endoscopy to see if there was any graft versus host disease. I was dreading it as last time it hurt despite sedation. This time for some reason the sedation didn’t work at all but it didn’t hurt and I watched it on the computer, so great relief.
It picked up two small red patches of inflammation which have been interpreted as GVHD in the rectal passage. The solution – bumping my steroids up to 30 mg a day – big dose! I now feel light-headed, restless and slightly removed from things sometimes. The plus side – I am eating a bit more. But it’s going to be horrible coming down from the high dose all over again. I don’t take well to steroids, but neither do lots of people.
Something which has concerned me is my mental capacity to handle being in hospital and a new vulnerability. After the transplant, which I handled quite well, I went home but then had to come back in after a few days for about 3 weeks for an infection. During that time I became very low and lethargic and didn’t want to do anything. I couldn’t concentrate on anything, and spent ages just lying. The staff were very worried about this and I did get an anti-depressant. Of course I was in early recovery stage from the transplant and the week of high dose chemo. A high percentage of cancer patients become depressed after treatment.
This time round I decided to be more proactive. I walked on the spot several times a day and tried to vary activities. I propped open my door so I could see a bit of the ward on the advise of a nurse. No TV in the room, although one just seemed to be fitted a couple of days ago while I had my op – I only noticed yesterday.
Despite best efforts I could feel myself sliding a bit. Also I had two periods of major anxiety – one for the day before the op which thankfully was bought forward. That I guess is relatively normal. The other was very weird. You can hear staff talking about patients all the time. I heard my name once or twice and what appeared to be serious tones, and I became convinced there was something wrong. I asked to see a doctor for reassurance but nobody came, until after a horrible day of worry a young registrar to just popped in and talk to me. I was so relieved I cried. I then felt very stupid.
I have got through years of treatment, by and large dealing with it pretty well. I have not had many episodes in hospital luckily and they were short, apart from the transplants.
I think that the donor transplant really takes it out of you, mentally and physically. The thought of such a long haul, with periodic visits to hospital and all the ups and downs probably for at least the first year, with the likelihood of some lasting GVHD problems is really hitting home.
I think the importance of planning a good structure to your day, in or out of hospital is important, but also you need to be aware that post transplant tiredness is normal and resting is OK. So pacing oneself is important.
Unfortunately hospitals are so understaffed that staff in general haven’t the time to stop and talk. I know they would like to. There should be a plan for dealing with the mental support of patients with a team of people and probably some designated staff on each ward who can do referrals etc. In the long term – more staff needed.
In a future blog I will have a rant about the shortage of beds and staffing, but tired now so will stop and have a bit to eat and start getting packed up.