Stem Cell Transplant during lockdown- any advice appreciated please!

This topic contains 7 replies, has 5 voices, and was last updated by  lucyh 1 year, 3 months ago.

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  • #141208

    beattheaverage
    Participant

    Today I left my husband at the entrance of the hospital as he went in for High Dose Chemo and stem cell transplant – I was not allowed in the building and am not able to see him again until he is allowed home in 3-4 weeks.
    Does anyone have any advice on what pain/issues/feelings he is likely to be going through and how I can help support him please?

    #141209

    rebeccaR
    Participant

    Hi there, When I had my transplant it was some distance from where we lived and my husband needed to be home for my daughter so other than an occasional quick visit (due to travel time) I was pretty much isolated. I was fine. Visits are over rated – your husband may feel too tired etc so just use FaceTime – at set times or when he feels up to it. He will not be in any pain with the process – will be overwhelmingly tired, nauseous and have the runs for a bit – very draining mentally and physically and will hopefully sleep a lot. The best thing you can do is cheer him up in brief but plentiful “little”chats.Sometimes not having visitors gives you the ability to just focus on yourself/recovery without having to put on a brave face to make your visitor feel better. It is tough mentally though as time goes on so try and plan treats for when he is out and give him something to look forward and focus on – perhaps something new he has been wanting for his hobby – something to do in recovery or together ? Be very positive that life after transplant will go back to normal when he’s recovered and plan for that as much as you can. It’s a bit of a slog so be a cheerleader and a positive force for him. Sct is not pleasant but it’s doable- had mine 6 1/2 years ago and still in remission – life will resume again. He is likely to more worried about how you are coping so your reassurance will go a long way to make it seem easier for him to focus on his recovery. Best lippy on and big smile – send lots of photos, little funny stories etc to put a smile on his face when he needs it – he will just be feeling a bit rough n fragile.
    Take care and make sure you look after yourself also.
    Rebecca

    #141210

    nigelp
    Participant

    Hi there I had my SCT last year in Feb.
    I was wondering if they were still going ahead through this crisis.
    I was in for two and a half weeks,everything seemed to go to plan and I had no major problems.
    I found the isolation hard only my wife visited me every few days. I had a tv in the room but could not get a internet connection very often.I could not concentrate to read very much.So with the tiredness slept a lot.I lost my appetite but kept trying to eat as much as I could.
    I felt the worst a week in.then picked up quite quickly.So was eager to go home and felt elated when eventually they said I could.
    My wife was brilliant at keeping my spirits up, I can not thank her enough.
    The NHS staff were fantastic.
    Hope everything goes well for you both.
    Best regards Nigel

    #141211

    beattheaverage
    Participant

    Thank you so much Nigel and Rebecca – reading your posts has made me feel so much stronger. Knowing SCT is not in itself a painful experience has helped me to stop worrying about this aspect. Some great advice on how I can help him through this – will do my best to keep smiling :0)
    Thank you again and keep safe.

    #141316

    jk
    Participant

    Hi there, thank you for posting about this. My mum is about to undergo her stem cell transplant in a couple of weeks and very worried for her. It has been really hard not seeing her with lockdown and her being so immunocompromised. I would like to put a care package together for her when she goes into hospital. Rebecca and Nigel could you give me any advice about what she might need? I was thinking magazines, water bottle, lip balm, headscarf, headphones. Are these things useful? Is there anything else you’d recommend? Rebecca did you wear a headscarf and if so do you have one you’d recommend? Thank you 🙂 Jess x

    #141324

    rebeccaR
    Participant

    Hi Jess, I had mine in Leeds and the isolation rooms appear very cold – think this is typical. I needed a cuddly warm fleecy blanket – for the comforting feel of it also. When appetite goes or sore mouth – I had little pots of custard, jelly, rice puddings – a tip I got from someone else. Audio books were great as less effort. Bought cheap packs of knickers as runs can be an issue n then just disposed of them n no washing. Baby wipes are useful. Didn’t have a head dress but wished I had a woolly hat or a headscarf. I was in a room of my own throughout so didn’t need headphones – not sure if policy has now changed on this. Laptop. I found it hard to settle to do much and you do get the films channels. I did make a count down calendar estimated 14 days in max – and at the end of the day no matter how bad it had been it was great to cross a day off and recognise one more day closer to home.Made it seem very doable as it broke the jail sentence up somewhat! I would make something like a countdown “advent type” calendar and everyday for 14 days you open the flap or box and inside is a treat for now or when you are out – Like a day out somewhere special etc. Even a favourite chocolate. It’s a long haul n tedious in that you don’t have a lot of energy but are equally bored. Little craft type projects to try? Skin got dry so body moisturisers. Thing that helped me most was little funny messages about what was happening at home and a few calls. I was very active upto going in etc so it was a real culture shock but am guessing after lockdown a couple of weeks in isolation will not seem as big a deal as normal so hopefully that will be a plus point. I can’t think of anything tbh. Just lots of treats and plans for the future.
    Rebecca

    #141331

    jk
    Participant

    Thank you Rebecca, I really appreciate you taking the time to write this response and all the advice. Yes she’s had to isolate for the past 6 months, which has been hard but as you say hopefully not as much of a shock going into isolation as it must’ve been for you. I hope you’re doing ok and again, thank you xx

    #141386

    lucyh
    Participant

    My husband had a stem cell transplant about 3 years ago (so not in lockdown) and I was able to visit him most days. One thing he found helpful was those anti travel-sickness wrist bands (you can buy them from any chemist) and a supply of ginger biscuits. Nausea was his main issue and these two simple remedies, plus some distraction by watching TV etc seemed to really help. The one time he didn’t want any visitors was the day he felt the most nauseous. I still feel bad I wasn’t there for that time, but he insists he really didn’t want to see anyone – similar to what rebeccaR you were saying earlier.

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