My husband has completed 5 rounds of the tablet chemo and has had his stem cell harvest. He goes into hospital on 30 March. he is being fantastic, so calm and brave.
I, on the other hand, have found myself getting more anxious now the transplant is getting closer. I am keeping this from my husband as I really don’t want to upset him.
I think my main worry is that he will be made so unwell by the chemo. so far he has responded so well to the treatments and has coped so well. I think he will find it hard and I am worried about how to support him. I know he will be in hospital for the worst part, but I want to get things right when he comes home.
As long as your husband can avoid infections the SCT (in my experience at least) is not that bad. When he comes home he will need to sleep a lot….I was having morning and afternoon naps for quite some time. The nausea and diarrhoea stay around for quite a while but both are manageable with drugs. Food will be an issue for some time as everything will taste metallic and nothing will please him. Given time it all passes and hopefully a long remission awaits!
Hello Adelaid- Agree with Carol S about avoiding infections when your husband comes home. Self-imposed quarantine has worked for my husband – no visitors, no supermarket shopping etc (for him) for 3 months. Follow eating regime and go with the flow. My husband slept quite a bit when he came home, but then started getting up later in the mornings, had something light to eat, then went back to bed for couple of hours in afternoon, stayed up for his tea and then had early night. Eventually started getting up at fairly normal time and just went to bed early, say 7ish. Eating normally came back gradually and hair has just grown back 3 months after SCT (which was his 2nd one, the 1st one being 5 years ago). My advice would be to take care of yourself as well as looking after your husband (and that’s not being selfish) and your feelings of anxiety are perfectly normal and understandable – take it from one who has been there- twice!! “Getting it right” is whatever suits the two of you. Best wishes. Carole
Best idea is to go into the process truly believing that you have made the right decision and that it will work! Try to keep your husband active even though he will feel pretty rotten for a few days. I took track suits and I think that psychologically changing into them each morning was beneficial to my state of mind. Also took my own pyjamas so I didn’t feel like an invalid in the hospital gowns. Couldn’t do much walking ( apart from around the bed) cos I was isolated for a time, but always dressed and sat out in the chair every day.
I was in isolation for three weeks, before going in I downloaded some good books to Kindle, took my iPad with me. There was a radio and TV in the room, so daytime TV got a temporary new viewer!
When I returned home we were careful with surfaces i.e. loo, door handles etc etc. I seemed to sleep a lot, didn’t eat much for a while, after about 6 weeks I started walking out but was very careful about who I came into contact with, then slowly life returned to something near normal. Don’t worry too much about things ,I guess just be sensible.
ps Im 2 years down the line, no drugs, no treatment (only 3 monthly Zometa) we go on holiday, walk the dog daily, etc etc.
Best of luck to both of you.
No, no, at the royal it is a 6/7 roomed isolation unit, you have to buzz to get in, they don’t encourage too many visitors at the start of treatment, even later only two, my wife had to remove shoes and outdoor coat etc before coming into my room, and had to wash hands thoroughly. You don’t get any of the coming and going that you get in a normal hospital ward, even the nurses stay away, I had to buzz them if I needed any attention. The cleaner always wore a mask and really gave the room the once over each day. I had ensuite facilities, a room with a view of the road outside, TV radio. So it got very boring, hence the IPad and Kindle.
Time for an update…my husband is in hospital day 11 from transplant. He has been doing really well….unfortunately now he has an infection so is on IV antibiotics, which we were told would probably happen. He is completely off his food, but is eating a little and still wants his coffee! He is being such a model patient, very calm and positive. He is still reading his books/kindle and watches TV a bit.
One thing that has surprised me in this whole process is the amount of people, friends and family that have not been in contact pretty much since his diagnosis. Quite disappointing, but I guess they just can’t deal with it. Luckily we have wonderful support from others, so we are ok.
Unfortunately, people not being in contact seems to be the norm. Sometimes, they don’t know what to say, sometimes they feel awkward and sometimes they just can’t be bothered. What does come out of it though is that you do get to know who your real friends are and post SCT, when you start to live again, you’ll know who is worthy of your time and company. After all, both are really precious.