Stem Cell Transplant

Hi  and welcome to our corner.

Stem Cell Transplant is a true rollercoaster. I have been through two Donor SCTs as I could not get into remission to get my Stem Cells harvested.... (hit my community name to see my story) and the post treatment recovery can take far longer then you would hope or even imagined.

You may find some of our ongoing threads helpful:

Life after a SCT - A Survivor's Guide where we have tried to collect or post treatment experiences.

Late effects and problems where we look at issues further down the line post SCT.

Happy to talk further.

Hi Ben,

6 months is still relatively early stage post auto SCT, it is similar to a big major operation, said daughter’s chemo nurse specialist, so you’re still building strength and stamina.

keep up challenging yourself, walking is excellent exercise, cycling or running even better if that’s what you like, but do remember to rest when your body needs it. Don’t ignore the psychological side of dealing with all that you’ve been through, too, your hospital might still be offering telephone counselling if you need it (often takes a while to arrange though!) Thd Lymphoma Action charity can also help, they have a phone line 0808 808 5555, and support groups in larger cities but also a Buddy scheme. 

Keep posting, you’re in a place where folk truly understand what you’ve been through

hugs xxx

Hi Ben,

Sorry to hear about you having to go through all the chemotherapy and an auto SCT and at such a youthful age. I am 'circa' 20 years on from you and had an auto SCT on 24 June this year after a relapse from RCHOP for NHL.  Yes not a good experience and I feel like I zoned out for about 3 weeks when feeling rough.  I am about 4.5 months 'post' and like you generally 'feel well' and my main exercise is walking and yesterday felt good completing 13 miles around North London so legs are OK.  I am still not as 'fit' as I was before and guess I may never be. I am working (from home) and find that a good distraction.  I probably eat a little less than before and some foods positively turn my stomach, hopefully you are OK there.  In terms of the physical 'ups and downs' my stomach seems a little more sensitive than before with indigestion on and off, strangely coming off the drugs they recommended (Omazaprol) helped improve!  The other main gripe is muscle and joint aches, strangely around the ribs which is slowly improving.  The one positive is I seem to need a good 8 hours sleep a night and after fighting it for a short while and feeling guilty, I now let myself have that.... it is great!

Having said all the above I totally get the toughness of dealing with the 'feeling'.  I have a face to face appointment coming up next week and I want to discuss with them what help there is regarding the battle between the ears.  For me I spend far to much thought inspecting my body for signs of problems and every new ache or twinge sends me into a blind panic and that needs to be dealt with as feeling like that is not a good thing.  People on here say that constant worry does subside but it affects daily life and how you interact with friends, who after 4 months and seeing me looking 'ok' take it that everything is back the way it was.  I don't bother saying anything but want to scream at them I feel far from 'normal'!

I don't know if this helps in any way but you are certainly not going through this alone so if you have any specific questions just ask and I am sure someone on here will provide some sound advice.

Look after yourself,

Mike

Hi Mike,

Thanks for your response. It was really helpful and must say hit the nail on the head.

Good work on the walking, 13 miles is impressive. Mine is cycling and must say that really helps with the mental side of it. I seem to have time where I have a lot of  energy then other times it goes out the window.

I find it tricky also with other people as they don't really understand the full extent of it  (which is fair enough) but just seem to think oh he looks ok so everything must be fine. 

The other thing I struggle with is that is was all go while having treatment etc now its just 3 monthly check up's. Which is obviously great but sometimes feels like that safety net has been pulled away. I know they are always a phone call away but never know if it is just part of the process or if I should be contacting them.

Keep well.

Ben

Hi Ben,

at this stage it can be helpful to have a read of Dr Peter Harvey’s paper on ‘After the treatment finishes, what then’, you can google it (it’s the only thing I advise google for, for cancer treatment!) . It explains the stage you’re going through, yes, the team will always be there if you need them, but they are now concentrating more on those at the acute phases of their treatment. 

cycling is good but I think I’ve grown a touch too old for long fast journeys, and tend to prefer walks now. 

Hugs xxx

After the Treatment Finishes - Then What?

Dr Peter Harvey

It’s a great paper

Thanks for the link, Mike! 
Hugs xxx