I hope I am not on my own in feeling lost, lonely and scared. My husband has just gone into hospital for a high dose chemo followed by stern call replacement treatment and for the first time since he was diagnosed in May, I am not sure what to do. I find it very hard to sit back and see him in pain and discomfort and have come home every night from the hospital in tears. I have been able to work through feeling crap up to now - but he is away for 3.5 weeks now and I hate the feeling that I cannot help him when he is not well. I know that this is just temporary but I have been reading the site tonight and crying and just getting up the courage to find the words to express myself.
If anyone can help or has any experience of high dose chemo followed by stem cell therapy it would be great to hear from you,
Fiona
FormerMember
Hello Claire
thanks for your message - it is nice to talk to someone who went through the treatment and is now getting on with life.
I felt a lot better when I realised it was a normal reaction and have actually coped much better since. I am looking forward to getting him home and actually having a whole evening at home, not just the time from 8.30 to 10.30 to do everything when I get back from visiting, getting a swim and sorting out an evening meal. I am planning to take a week of work when he comes home to spend some time with him - and help him if he needs it.
Paul is doing much better now after getting a temperature on Sunday - they started a bucket load of anti sickness, anti diarrhoea, antibiotics, pain killer and fluids and he is now feeling ,much more awake, but very tired and weak but at least eating more, particularly the jelly I take in!! Hopefully in a few days he will feel strong enough to start his laptop and respond to all his emails which should cheer him up. He will have been in for 2 weeks this Thursday and I do not think that he will get home before a week on Friday, so he has some time to get his strength up and feel bored again.
thanks for your message - I have felt and coped much better since I got all the useful replies. Paul had a temperature on Sunday - and then they gave him lots of anti sickness, pain killers, antibiotics, fluids and eventually anti diarrhoea stuff - all of which has made a big difference. He looked much better on Monday lunchtime and is now feeling tired, eating more and asking for lots of jelly for his sore throat. The nurses and doctors at St James have been great and explained his treatment to me -especially the sweetcorn smell after the stem cell transplant!! It has been hard seeing him in pain, feeling grotty but I have always managed to massage his shoulders and back and rub and massage his hands and feet which always makes his relax. Today he is currently at day 4 or 5 post stem cell transplant and I know that it takes about 10 to 14 days for platelet counts to start rising.
I have also managed to get a therapist from the local macmillan centre to go to his room on their rounds to massage his hands and feet and he really enjoys it. He may not appreciate the physio I am trying to organise for him, but it will help him get back on his feet a bit quicker. I am currently thinking about organising some physio for when he gets home, but that is probably about 10 days or so away yet.
thanks for your message - I am feeling much better and finding it easier to cope with everything that Paul's trreatment has thrown up. Today he is on day 4 or 5 post stem cell transplant, so will have been in hospittal for about 2 weeks this Thursday. He had a temperature on Sunday - but lots of anti sickness, antibiotics, fluids, pain killers and anti diarrhoea drugs later he is feeling a lot better - but now weak, enjoys the jelly I bring in for his sore throat and the ice cream that he gets at the hospital. He probably has about 10 to 12 more days in hospital - lots of time to get his strength back, reply to his e mails and start to feel bored of being in one room!
I have found all the support wonderful and humbling - we are all really one big family that just helps each other in a very honest way because we are all going through similar things and reacting in different ways.
Fiona, I'm so glad you have family and friends who are there for you. Think of things for them to do and let them! It will make them feel useful and a part of the journey and it will help you too. It won't be perfect, it may be better, but whichever it is, it will get done and be good all the way around. You are very fortunate. There are many with Cancer whose friends and family disappear at times like these. You read about it a lot on here. So you are truly, truly blessed! It sounds like you are managing very well. Its amazing what we are capable of when faced with it squarely in our path! We are much stronger than we ever realized.
The hardest thing for me to realize later on, was how my Dave was working and traveling and taking care of himself just fine and then in a day he couldn't even get out of bed and go to the bathroom without drugs and physical assistance. It was shocking really. With my mother, who died of cancer, it was a slow gradual decline once we knew she wasn't going to make it. With Dave it was BOOM he was down and we were struggling to get him back to some sort of "normalcy". Between the disease and the treatment it has been a pretty brutal road, but the improvements, however small, sustain us.
