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
Hi Fiona,
My husband Dave has Multiple Myeloma and has had one SCT and will have a second in September. Most of the difficulty is because his bone marrow is not healthy and he is impacted by the Lymphoma, so to whomp him with the chemo and new stem cells and all that goes with that is just compounding all his discomfort. As a caregiver I feel your pain. Its so hard to watch a loved one suffer and be afraid. There is a patient learning curve for him and also a caregiver learning curve for you. You need to do something, and one thing you can do is make sure that he is absolutely totally comfortable physically as much as possible. My difficulty with my husband and for me too, was embracing all the drugs to make him comfortable. We are not pill poppers and have never been sick, so to suddenly be pushing morphine and pain killers on him was a whole new deal for me, and for him to take them. His worry that he'd get addicted, etc. So be patient to try to hone in on what is going on physically so you can articulate it to the staff. Be persistent and insistent that they manage him well and that he LET THEM. He will come out the other side and you guys can deal with all that other stuff later on. Understand that you are both on this journey but in slightly different paths and viewpoints. It is happening TO him, but it is happening TO you as well. Find someone YOU can talk to about all your fears and frustrations so that you have someone. My problem was not having my husband and best friend to talk to about such things. It was advisable for me not to dump my worries and fears on him, he had enough of his own and he was sick. Many of your friends and family will disappear as they can't confront fully what's going on. Don't let that be your focus. Instead, talk to a nurse or other family members at the hospital, or people like us here. You will absolutely find the most amazing and courageous people who are so willing to share their similar emotions with you and help you put it all into perspective. I have found such gems here on WN and other places and I feel very blessed. Start a Caring Bridge (www.caringbridge.org) website, its free and easy and PRIVATE. There you can tell your story and then journal everyday and your friends and family can hear what's going on and leave your husband and you messages. Keep it light and good news kind of deal, so they don't get all stressed about the details of constipation and diarrhea. People feel uncomfortable with that kind of detail! Anyway, if you want, feel free to go to my profile and you will find my husband's caring bridge site and can look at mine. Its very cathartic for you to make daily reports and helps you to not spend hours on the phone repeating the same thing over and over. Its just exhausting. My husband was so incredibly moved by all his guestbook entries during the beginning of our journey that it made a HUGE difference in his ability to get in a fighting frame of mind and endure all that he had to go through. I will tell you Fiona, you will come out the other side. You will be changed forever, but whether it is in a good way or bad is fully up to the two of you.
My sincerest heartfelt best wishes for you at this difficult time.
hi i am new to this site,i have done 5years with my husband with bowel cancer we both have survived, it has been hard at times but with good family and friends you will get through ,my good wishes go to you katy61
My husband has also had a Stem Cell Transplant , You may read more on www.susiehemingway.blogspot.com if you care to. Just scroll down until you come to the section on SCT, My husband had his in 2007 and is doing OK now. Please don't feel alone, feel free to contact me at susiehemingway@googlemail.com if you feel you would like to ask any questions. You will find as your husband gets stronger, things will start to fall into place . You are probably very tired at the moment so try to get as much rest as possible, remember to ask as many questions as you need until your understand your husbands situation but take everything slowly. All will fall into place and he will soon be home again with you.
I am 23 and had a intensive chemotheraphy and stem cell transplant last year. I was in hospital for 5 weeks, it was hard at the time not but it worked and I am now in remission for 7 months although I still have many side effects to all the different chemo I had before I had the transplant. I have video blogs on www.jimmyteens.tv and under belfast you will find my videos under claire's video blogs and round the clock on 10 north.
I hope all will go well for your husband and that he will soon be out of hospital.
Thanks for your message - it was very useful. I felt a lot better just knowing that what I was feeling was normal and know what you mean about not having your best friend and husband there to talk to. Friends have been good and have kept in touch and my family cannot do enough (to the point that sometimes I feel a bit swamped by their offers!). The nurses and doctors have been very good and explained his treatment. I keep a handwritten diary every day and lots of thoughts are going into it -and it helps me to keep e mails and texts to friends and family light. Paul is getting very good treatment and is now feeling much better - had a bucket load of anti sickness, anti diarrhoea, antibiotics, pain killer and fluids pumped into him on Sunday and is now feeling very tired, 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.
I am coping with the visiting, work and home a lot better than I thought I would - but I have kept myself very busy all week and then at the weekends.
