Stem cell transplant and the effects

Hi  and welcome to our little corner of the Community and you have found a safe place to talk with folks who understand the journey.

Your journey sound rather familiar as there are lots of folks who have had a long post treatment issues.....you can see our stories by hitting our forum names. The SCT Treatment can life changing in both positive and indeed negative ways.

I had two Allo SCTs with cells from my brother, I had no issues following my first Allo in June 2014 but a long recovery following my second in October 2015

We have actually collected our post treatment thoughts in these two threads Life after a SCT - A Survivor's Guide and Late effects and problems

Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area  and I found my local Maggie’s Centre to be amazing.

Keep talking as we are around to help walk this with you.

Hi there! Goodness me, you've been through it! Do you have supportive family and friends? I think it's worse when there's permanent damage, in my case it's my sciatic nerve and I have constant altered sensation and footdrop (wear a splint) which has put paid to me driving and walking the dog and I have very poor balance so sleeping downstairs still. It does prey on your mind, like the monkey on the shoulder. Treatments are gruelling but stem cell seems the way to go and we get checked on regularly! I have declared no visitors during my recovery and have stayed in touch via emails, WhatsApp and Facebook. Is there a local lymphoma group? Cancer counselling like the HOPE course, anyone else with CNS version? what part of the country are you? There is a very good read on 'life after cancer' which helps put things in perspective. I think most of us lose our way....my husband says my brain is too full of thinkingness!

All the best,

Lynda. Xx

Hi there! Goodness me, you've been through it! Do you have supportive family and friends? I think it's worse when there's permanent damage, in my case it's my sciatic nerve and I have constant altered sensation and footdrop (wear a splint) which has put paid to me driving and walking the dog and I have very poor balance so sleeping downstairs still. It does prey on your mind, like the monkey on the shoulder. Treatments are gruelling but stem cell seems the way to go and we get checked on regularly! I have declared no visitors during my recovery and have stayed in touch via emails, WhatsApp and Facebook. Is there a local lymphoma group? Cancer counselling like the HOPE course, anyone else with CNS version? what part of the country are you? There is a very good read on 'life after cancer' which helps put things in perspective. I think most of us lose our way....my husband says my brain is too full of thinkingness!

All the best,

Lynda. Xx

Hi.

Many thanks for replying. Thankfully I have a fantastic family. I don't think I could've got through any of this without them. I have a small network of friends but I get anxious when seeing them because of the way I look. Had to have an operation on my eye as vision is now impaired. Hearing too, have to wear hearing aid. Stairs are beginning to be a trouble again as pain in legs. I now walk with a stick as I  lose balane easily, but at least I'm walking.

I live in Southend, Essex. I'm at hospital tomorrow and keep wondering if I should pop into the Macmillan centre there. I'm anxious about everything.

Best wishes to you

Jane

Hi Jane, please go in past the Macmillan Centre and talk with them.

I was in a wheelchair when I came out and it took 4 months to get back on my feet. You will see that my hearing is very badly damaged and I also have two hearing aids. Nerve damage in my neck be a problem but on the balance I am still alive and doing ok.

You do need to push the system to ensure you get all the help that is available ((hugs))

Jane....YES....call in the centre and find out what groups are available.  Our centre offers 6 free treatments...reflexology, counselling etc. Physio run exercise groups, cheap time limited health club, book clubs, knitting groups. Craft days(•‿•)I went to a macmillan funded hope course and as a group of 8 we still meet up monthly and support each other. Good luck! Oh and there was a beauty day....more chatter, tea and buns!

Lynda xx

Hi Mike,

Thankyou for responding. I too was in a wheelchair (purchased by my Dad), which I used when they took me on holiday in October.

I will go to the Macmillan Centre. Will keep you posted.

Jane

WOW! OK, thanks. This is just what I need. What part of the country are you?

Will keep you posted as to how I  get on, thankyou.

Take care

Jane xx