Care after sct

Well done Allie - this open’s up a new world for you ;)

Hi Allie,

primary refractory is not a term I knew about either, but it means that none of the standard treatments worked to gain remission. HL is supposed to be 95% reactive to first line treatment. Daughter obviously fell into the 5%. 

But she’s there now, thanks to the third trial drug and the insistence of her Consultant that she went through an allo SCT to keep her there. 

Hugs xxx

Hello Allie 

My husband had a stem cell transplant in mid August this year - and I completely understand how you feel, and had the same concerns about him coming home. 

I appreciate that everyone's experience will be different but happy to share ours if it helps.

My husband came home after 4 weeks. Those first few weeks at home were very hard. He was very very tired, unable to concentrate on anything, and spent most of the time just resting on the sofa and watching tv.

For the first 6 weeks at home I had to encourage home to eat / drink and prepare all his medication. I reduced my work to part-time so I could be at home more. 

By mid October though he really began to recover and started prepping his own food and taking care of his meds. 

Now 4 months later he gets very tired if does too much and we have to be careful where we go / what we do due to his reduced immunity - but life is almost 'normal' again.

I hope that helps a bit. If you would like to chat then do message me.

Jac

Hi Jac , some great support for Allie, I see you joined us a few months back so welcome to our little corner of the Community.. 

It sounds like your husband is doing is doing and let’s look for this to continue.

The group is always around to help out ((hugs))

Hi Jac

thank you so much for telling me about your experience, and sorry for the late reply, I’m so glad to hear your husband is doing well and life is getting back to normal, a new normal i guess! It’s amazing how even after a few weeks something that seems daunting quickly becomes ‘normal’, like I find myself able to say my husband has cancer now without getting choked up..and now he has finished his first type of chemo and just about to start the intensive stuff- the 1st chemo now seems like an old familiar friend whereas the new stuff fills me with fear. My weakness is that I’m a very emotional wear my Heart on my sleeve type of person and any information or news we get given (literally any, good or bad) sets me off into floods of tears, I think because I get myself so worked up before hand and then I just don’t take anything in. So I’m trying to educate myself as much as I can in preparation for his forthcoming stem cell, before we actually get to it, hoping by the time it comes it will feel familiar and I will be able to be his tower of strength. You sound like you have been to your husbands rock and that’s what I do want to be for paul too

I wish you and your husband a happy Christmas and hope that his recovery continues to go on well xxx

Happy Christmas Mike

My husband stayed home with me for a week or so after I came home. I really couldn't do much for myself at all and i slept most of the time. Even sitting up to chat with visitors was hard. It was a good 4 months before I could stand in the kitchen long enough to cook a simple meal. Its been two years now and i work full time and do all my chores at home.