I'm hoping someone can advice me on how to cope with seeing my husband having the awful side effects of Donor Stem Cell Transplant.
He was conditioned with the chemo last week , and transplant took place 6 days ago . Although we were made aware of how poorly he would become, I was not prepared for how I saw him earlier today. His mouth was bleeding, he is beginning to look jaundice, he has not taken any diet or fluids orally since 3 days ago. They have commenced fluids and have just started nutrients through his Hickman Line. He has syringe driver with morphine and can also have Oramorph when needed. Although the staff are telling us this is expected, but I would like to have piece of mind that this will start to become better sooner rather than later. I don't live close by to the hospital, and I'm not sleeping at night worrying that he is in pain, as he refuses to use his buzzer and will not ask for help.
I would appreciate any advice from people who have gone through this themselves, or have cared for someone that has experienced this. T.IA
Hi Shopkin, and welcome to Carers.
It's good that he's getting fluids now. Side effects can be so worrying for us carers, but the person going through it usually handles it much better than we do. Like yours, my husband can't bear having anyone make a fuss. There's no yardstick for duration of side effects, it varies so much from one to another, but it sounds like he's just getting on with it. I spoke to a friend who went through the same and she said that making her own decisions gave her a feeling of empowerment and helped her get through, so I just let my husband ask when he needs help, which is rarely and his side effects are improving enormously now. It can take time, try to be patient and trust him to push through it in his own way. But do ask questions here where you can get expert answers for more information.
Love and hugs,
If you find dust in my house, write your name in it. When the signatures overlap I'll get the polish.
Hi Shopkin and welcome to the Online Community, although I am so sorry to see you having to find us. I don't normally post in this forum but your thread heading did catch my eye.
I am Mike Thehighlander and I help out in our dedicated Stem Cell Transplant Forum. I have been through two Donor Stem Cell Transplants (SCT) and from what you have put in your post - this is what happens. Yes it is scary but it is part of the SCT process.
This is VERY early days in his SCT journey but trust in his team. These folks do this day day in and know what is going on. It is hard to accept that they can say "this is normal" but it is, honest, as I have been right where your husband is. Things will improve as his engraftment takes control and counts start to go up...... but it can take a good 14 days post transplant.
Why not come over to the Stem Cell Transplant Forum and meet up with people (patients and carers) who have walked the walk so can talk the talk.
Follow the link and join the group by hitting the ‘Join the Group’ tab just under the main group name. At this point go to the right on the group home page and select how you want to receive email notifications when someone answers your posts.
The best way to get support is to go to the 'Start a Discussion' tab just under the main group name. Set up your own Discussion and Introduce yourself to the group - you could just copy an paste what you have in this first post.
When you feel up to it think about putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself.
To do this click on YOUR username, look to the left and select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names like Thehighlander
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
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