Janemcs
Posted by

Still riding the stem cell roller coaster

Janemcs
Posted by
22 Aug 2016

7 months on, I am still suffering symptoms of GVHD and wondering if I will ever feel like my old self again

I've just come back from a lovely holiday in Brittany with my family. The weather was perfect the location was lovely and we had a really nice time, but the whole thing was slightly overshadowed by my ongoing symptoms of GVHD which meant, on a couple of occasions I was unable to join in with my family and on one occasion I was in tears in crippling pain for several hours.

I had been feeling pretty good before the holiday. I had started running again and was feeling positive about the future and planning a gradual return to work sometime in September. But these problems I faced on holiday have shaken me a bit and made me feel like perhaps I am not as ready as I thought I was. I've also been worrying that perhaps I will always be living under the shadow of my diagnosis and having to adjust my lifestyle to cope with the side effects of my treatment. It's been a bit of a struggle.

In good news, I had a check up today and got the results of my last biopsy. I remain MRD negative and my chimerism is still 100%. 

My doctor has adjusted my medication to try and help with some of the more unpleasant symptoms I have been suffering so hopefully it is just a matter of time before I start to feel like my old self again.  I'm sure it's just a blip, but I am feeling a bit drained again..... Up and down goes the roller coaster!

Comments

Eleanor Baggley
24.08.2016

Jane, it's fantastic to hear about the results of your last biopsy! But i'm also so sorry to hear that you're struggling with GVHD and side effects. It's so true that it's such a roller coaster and I do hope that you start to feel your old self again soon. Don't forget we're here if you wanted to have a chat about anything. Feel free to call the support line or email us. All the best, Eleanor