Care after sct

Hi again, yes it's me and welcome to our little corner of the Community........ good to be looking forward and plan.

How he will be once he gets home is a very good question.

If I look back at my two SCTs I walked out the SCT unit after 4 weeks in isolation and drove 4 hours home to Inverness........ it was like nothing had actually happened and I was 100% able to do everything I could do before treatment started..... although I still had to be carful about infections.

Fast forward 16 months to the day I was getting out after the four weeks for my second SCT........ I was in a wheel chair, was not eating, could not drive and needed help to dress, shower and even to work out my meds....... this went on for a good 3-4 months............. so it is that open ended.

In general terms the thought is that the patient should look at writing off the first 6 months post SCT....... but as your husband is having an Auto SCT the may not be as long due to an Auto having less bumps on the road. So he may well recover quickly but it may just take time.

I would think about talking with your boss so they understand what could be worst case scenario.

You may have looked at this thread Life after a SCT - A Survivor's Guide as it will give you a taste what post life can be like.

You will see that my head SCT Consultant told me that going through a SCT was like doing a boxing match and a marathon every day I was in hospital and this was done without any training.

I am sure that some of the others will be along to give their thoughts.

((hugs))

Hello,

our team told us that an auto SCT was bigger than a major operation, and therefore an allo SCT is bigger than that. However it is of course, dependant on individual recovery rates and pre-fitness too. 
daughter was pretty fit going into her auto aged just 27, but like Mike I had to push her from ward to car in a wheelchair. She was able to walk a short distance, from car to sofa, she had some lunch and went to sleep for a couple of hours just curled up on the sofa.
she did recover slowly and steadily, was able to perform two weeks later (she’s a freelance musician) but had to sleep in her car for an hour between each slot; she was doing masterclasses.
after her allo she had a couple of setbacks with infection and so the first 3 months were hard going, plus weekly clinics back at the hospital of course. She did some composing and arranging as able. She began playing again properly around 8 months post allo (had a central line in till then and as a brass musician that was a ‘no no’ to play)  She went on a USA tour (still needing to fly back every 3 weeks) with Seal 10 months post allo. At that stage she was quite a bit stronger but still needed decent rest periods.
hugs xxx 

Hello again Mike  

I will have a read up on the survivors guide, still working my way (slowly!) round how the forums work, I’m not the most technically minded.! Thanks for your honest account of both times you went through sct, shows me it really is a case of wait and see, but like you say at least I can give my company the heads up just incase. I guess I was naively thinking/hoping he would be returning ‘all fixed’ and life would return to normal..although I can’t really remember what normal was- 7 months ago he was working, renovating our newly moved into house and racing mx bikes at the weekend’s but that seems like a world away now!

Allie

hi Moomy

thanks so much for replying, and I’m so sorry to hear of someone so young having to go through what your daughter has, it must be devastating as a parent to watch. I’m glad to hear she seems to recovered fairly quickly and I do hope she is still in good form. My husband will be having auto sct so from what I gather his is the easier option (if there is such a thing) to get through. Could I be nosey and ask how long she has Been diagnosed and at what point she had the sct? My husband seems to be being offered this very early on (he was only diagnosed in end sept). No worries if you’d rather not Answer, completely understand..just trying to get a better general picture of the whole process

allie

Hi Allie, 

daughter was diagnosed with Hodgkin’s Lymphoma aged 26 in 2004, had her auto not much later as the 6 months of standard chemo didn’t work, we now know she was primary refractory. She only reached remission in 2011. 
it’s all in my profile.....do have a read, though as her cancer was a long one it’s quite a long read (plus I was greedy and got bc myself!) 

hugs xxx

Good morning Allie....... much simpler than angioimmunoblastic 

You do need to see this SCT journey as a long game, its all about positioning yourself nearer the positive end of the view of what the future looks like.

Yes the journey me have some challenges but the important thing is the greater good in all this. The picture below sort of represents what the journey will most likely be like.

.....but it is all about how you look at things...... ((hugs))

hi Mike 

Thanks for this, but I thought I'd dr the pic before showing Paul as his first comment would have been 'that's not a real bike it hasn't got an engine!'  (that's actually him back in May) 

Love love this Allie.

This picture has transported me way back to my childhood when my dad was part of our local Motor Club and 4 times a year the club held 'Scrambles' as I remember them - that must be 55 years back and one of the regular young and up and coming riders was the one and only Vic Allen from Aberdeen who went on to great things in the sport - I still can remember the unique smell of an event like this.

It was held on the sand dunes and fields right on the North East Aberdeenshire coast line.

Its a great sport, Paul took it back up again after a gap of 25 years and formed a club called ’Cirencester old fat and over the hill scrambling club’ as you tell from the clubs name it’s basically a group of older guys trying to re-live their youth, under no illusion of there lack of capabilities! I’m the club photographer which means I get the pleasure of following them around muddy fields getting splattered every time they fly by..it’s his biggest passion in life and he already has a standing joke with his consultants when they get to the end of every meeting they ask him have you any questions? ‘yep..When can I get back out on my bike!’ 
yes, paul knew the name Vic Allen as soon as I read it out

I’ve just found out how to read profiles, wow you’ve had a thought journey as a family, my heart goes out to you. What does the term primary refractory mean? Is it when your body can’t achieve remission? Sorry to sound so un-educated but we are very new to it all still!