Stem Cell Transplant (stc) after care

[Scaredy_cat]

Can someone who has been through a sct, or their carer, give me info about the time after hospital discharge please? We live more than 30 minutes from the transplant centre so the hospital is providing us with a flat in Bristol where my husband will be my carer. I know the early days he'll need to be there mostly 24 hours a day. Roughly how long before he can leave me for longer times, e.g to pop home to check on our house etc? I know this depends on all sorts of things to do with my blood counts but I just wondered what happened for you?

[ConniesDad]

Hi there. I was discharged home 17 days after receiving my donor cells. I live in the city where the hospital is, but probably 20-30 minutes away. My partner didn’t take time off work but I had other family close by who could pop in to check on me regularly.

Everyone recovers at different pace and some will be stronger than others, but I’m sure that you will be fine to be left alone for short periods, but I guess you can just play it by ear and see how you feel on the day.

In my case I recovered quite quickly and the medical staff were amazed at how quickly I was recovering and my progress, but again, everyone is different.

Wishing you luck and speedy healing

Garry

[Scaredy_cat in reply to ConniesDad]

Thanks for your reply. I hope you had a good Christmas. Focusing on the 7 days before and after the transplant, how ready were you to do crafts, reading etc or will I be wiped out?

[ConniesDad in reply to Scaredy_cat]

I had 3 days of chemotherapy and 1 day of total body radiation prior to my transplant and then 17 days inpatient after receiving the donor cells. In the days in the run up, I was mainly sat in the chair or bed watching tv reading or scrolling on my tablet. I gradually started to feel less well and so was happy to do little/nothing.

After the infusion, I felt weak and tired almost all the time and didn’t feel like doing anything at all. Some days were just a blur of sleeping, transfusions, medication, etc. I always tried to maintain a limited routine of getting showered and dressed every morning to try and maintain some sort of normality. As I grew stronger I tried to sit out of bed as much as possible and tried to be active in my room, but my activity was basically watching tv lol.

Once I returned home (4 miles away) I was generally pottering around the house and napping but visiting outpatients twice weekly. I did some bits of housework but spent most days on my own at home as my partner was working.

I’m now more active and don’t nap so much but I’m able to do more housework, cooking, gardening and walking the dog. It’s a steady process and I don’t really notice improvement anymore but every once in a while I realise I can do more than before.

I’m an impatient person generally and can’t wait to be even stronger and get back to “normal “

Good luck with your journey

Garry

[merlisa in reply to ConniesDad]

You are all heroes, and you are my hope！

[Otterfield]

That is fantastic that your hospital is providing a flat. We have approximately a two hour journey to the hospital and for the first few weeks I had check ups twice a week. My husband didn't stay with me 24 hours a day - I insisted that he go out for a walk every day for his own health. I could just read, watch TV or doze in a chair. Because I was being checked so frequently, my red blood cells and platelets were topped up as necessary so low counts were rarely an issue at home.

The most important things were to be strict about the neutropenic diet and to be really careful about hygiene and avoiding other people. We are still doing all that and it's become easier now it's a habit.

It's a very scary time, being "let loose" after being constantly monitored in hospital, but the hospital is only a phone call away.

Keep asking questions as you need to.

And Happy Christmas, Jennie

[Scaredy_cat in reply to Otterfield]

Thanks for your reply. I hope you enjoyed Christmas. The flat is good for saving trips to the hospital but it means if my husband wants to visit home, he needs to be away from me for many hours. I've no idea how dependence on the carer progresses. I've read that people take crafts etc to do but again I'm not sure which days I won't want to do anything at all and which I'll be bored rigid. Focusing on the preliminary chemo days and the first 7 days post transplant, what would you suggest I have ready?

[Otterfield in reply to Scaredy_cat]

Had a lovely quiet Christmas thank you. My husband wouldn't let me lift a finger!I can see how it would be a concern if your husband has to be away for many hours. Could you leave a key with a neighbour so they can check the house, at least for the first couple of weeks.

As soon as the chemotherapy started I really wasn't able to do anything much, just watch rubbish on TV. I didn't feel well enough to be bored. When I started to get bored I knew I was feeling better. I think, if crafting is your thing, it would be worth taking something in with you. Also very undemanding books and magazines.

Back at home, I don't think I was ever completely dependent on my husband but I was very glad not to have to get my own meals or clean the house.

One thing I wish I had done was try to walk more around my room. I was incredibly tired but a minute or so walking each day would have stopped my leg muscles deteriorating so much. When I came home, climbing the stairs was really difficult.

Now, on day +115, I am able to walk nearly 2 miles in one go. I go for a second daily walk and have a daily total of about 2.5 miles. So it does get better, but I still have to work at it.

Very, very best wishes for next month! Jennie

[merlisa in reply to Otterfield]

You are all heroes, and you are my hope！

[merlisa]

You are all heroes, and you are my hope！