Hello friends, it's a while since I posted an update about my SCT. It's been about seven months since I received my donor cells and my blood/immune system is now 100% donor. It's still relatively early days and I'm still very vulnerable to infections but in general my medical team is pleased with my progress. I still have some skin GVHD but my consultant says that that is not a bad thing and it's not causing too much discomfort. Really the only negative at the moment is an ongoing anxiety that things could still go wrong but I'm trying to find ways to control that.
Thanks for all your support over the past couple of years, from just beginning to think about it, through a really gruelling time in hospital, to my emergence on the other side.
Jennie
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Otterfield
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Hello Jennie, great to hear from you. Can't believe it's been 7 months but I am sure some days you must have felt it was much longer. Fantastic that you are doing well and your medical team are happy with your progress. Don't know if it's because we are the same age but I always read your posts with interest. You are an inspiration!
When I feel worried about things going wrong again I just look at some photos I have from pre-transplant and recognise how much better I am now and that I am living the life I wouldn’t have had otherwise. I also keep in my mind that I am in remission from the myelofibrosis and that I need to make the most of the extra time I have been given as a healthy man.
Thank you for sharing this, and congratulations on doing so well. I think we all have days of letting our minds wander to where they really shouldn’t go, that’s only natural. I guess the main thing is to keep positive as much as we can…if that becomes hard to do there is help and support. Keep us in touch with your journey, very best wishes 🥇💪❤️
Really good to hear from you and to hear the progress is good. What a struggle for you but you made a brave decision and are reaping the rewards -even if they are gradual. I hope the worries will reduce bit by bit as time goes on. Thanks for taking the time to post.
Well done Jennie. So happy you are doing so well and your body is strong. Your body want to thrive while your mind still remembers being sick and is trying to protect you. That will be an on going struggle that I am sure you will adapt to with time. Please continue to update us on your future plans and victories. ❤️❤️
You've shown great courage Jennie and present anxiety is quite understandable. Hopefully though as your recovery continues and you gain more resistance to infections this will diminish. I send best wishes. Diana
This is wonderful to hear that you are on the mend. It is so good to hear this information for myself, as I am about to start discussions with the transplant team. Take care and keep on improving
You really are such a fearless warrior, (anxiety of no), you are still out there in the midst of this ASCT (adventure), swinging & taking all the blows etc .
Thank you so much too for continuing to share your journey w/ all of us... Doing so is so important, for all of us to learn and glean what knowledge is to be discovered via your experience ...
Warwick, here in Oz, (MATES website). Recently celebrated his 2nd anniversary Post his ASCT procedure. Warwick, is still struggling in some departments. However, overall, he appears so much better these days. His energy levels are returning slowly too...
However, & form the external 'spectator's perspective' we here at MATES can all see just how much Warwick has improved in these last few months in particular...
Warwick tells us, quite frankly, That he is no longer the Warwick that we all once knew, and that his donor/chimera adventure has changed him in personality, as well as his physical Blood type - Fascinating observations, in my view...
Jennie, Warwick says that here in Oz, that they also assign a psychologist to one's care, because the transformation can alter one's personality, much as it has w/ Warwick, in my view.
Interestingly, Chris Harper, over there in the UK, (who was somewhat miraculously cured). Is apparently unchanged, and spends much of his leisure time paddling his kayak all over the place, and just generally loving his LIFE...
Hopefully, you too shall soon be emulating all such feats yourself...
Very best wishes for your continuing ASCT recovery Jennie...
Thank you for your kind words. That's very interesting about Warwick's personality change. I've been thinking about this and I asked my husband what he thinks, but neither of us are aware of any change in me. I'm impressed that he has been assigned a psychologist. I've had two telephone sessions with a counsellor but it wasn't especially helpful. When I first came out of hospital I could have done with more help as the whole experience was pretty traumatic.
Great news. From reading your posts I always knew that you would do well. Keep up the positive attitude. Best of everything for the rest of your new life.
Really pleased all going in the right direction and thank you for sharing your journey with us. Hope you get some comfort that we are all willing you on over that winning post. It's only natural to worry that it may not go as planned, but you are on a positive road and sounds like a good medical team. Easy for me to say but take each day as a positive step forward and one further away from it not going so well. Take care.
So good to hear things are heading in the right direction. I imagine the anxiety is part and parcel of the whole process. Hope you’re being supported in that aspect too.
Delighted you are thru the worst times,anxiety is normal I am sure .You are a brave lady & positive ,I am sure you will be totally well soon.Very Best to you & your husband,congratulations Both for getting thru a truly difficult time in your lives.Keep strong 🤗😍Sally
Jennie, it is absolutely wonderful to hear that you are doing so well. I am not surprised you are feeling anxious - I'm sure I'd be exactly the same. But I'm sure that, as time goes on, those negative thoughts will disappear into the background and you can focus on your life ahead. Easily said, I know.
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