Hi everyone. Well the time is coming close now for husbands Auto SCT. Relapsed Hodgkins. Hes had Brentuximab. Harvesting is later this month pending a good PET scan. So I am being positive.
In September last year we were settled. Having treatment. Being as good as we can be with the odd hospital admission with infections! But we settled and Christmas gave us a focus. Films. Cosy nights.
January. BANG. Isat there and was suddenly so scared. Im so scared of something going wrong and losing him. So scared even when he goes in. I mean I cant imagine how terrified he is. If there are any carers/partners out there that have gone through this then any advice appreciated. Any words of wisdom and key things you think help when he comes home greatly appreciated.
I work full time and concentrating on thats going to be very odd when hes in.
Thanks for reading and hope all your journeys are progressing as desired xxxx
Hi Scaggette I was the one in the bed during my two Allo (donor) SCTs so I asked my wife Fiona for some comments.
She said…….
“Hi, I do feel for you as I have been in your shoes two times. The first thing you need to get quickly is that you can’t control this as on the whole you are a passenger.
The time when Mike was in the SCT unit was actually ok. This was not during Covid times but he slept a lot so most of the time I could have not been there.
We had to move down to Glasgow for both his SCTs so I was not at home but was still able to do some work remotely, navigated doing his washing (they wanted a clear change of clothes every day snd night!!!) was a challenge so I would go over to Edinburgh to our daughters for a few days, see the granddaughters and do the washing. The only scary days was when he ended up in ICU as he had a reaction to his chemo but it was more a precaution than anything else.
When he got home after his first SCT it was as though he had been on holiday!!! he was fit, eating well and was low maintenance. I worked through both Mike’s SCTs but I work from home so was always around post SCTs.
Post his second SCT he was not well, ended up in a wheelchair, had to go to regular physiotherapy appointments, I had to do all the driving for about 4 months and this included at least two clinic appointments each week for a few months with one being down in Glasgow every two weeks.
He lost is appetite so I had to ensure that he was getting simple food that he could mindlessly graze on…….. this is over 6 years ago now and until he asked me for my thoughts on a post on here I don’t give the past a thought.
We we’re in a situation that if SCT did not work then it was palliative care but we always believed that good would come from going through SCT”
Well that a few words from my other half. Remember to have a look at this thread Checklist for SCT Unit
Always happy to get Fiona to answer questions ((hugs))
