I had so many lovely and supportive replies to my post about my decision to go ahead with the SCT that I thought I would post again to thank you all.
When it happens I know that I will be able to post in the group whenever I need moral support - you are a fantastic bunch. I will certainly be asking Chris and Chris all kinds of questions in the coming months.
Several people mentioned the importance of having my husband's support and I'm pleased to say that he is totally committed to it. I am obviously concerned for him as it will fall to him to drive me back and forth to Southampton twice a week afterwards (70 miles each way) and he is almost 70, although extremely fit for his age. I also worry about him worrying if you know what I mean.
We don't yet know when it will happen - I would prefer the spring so I can recover during longer days and warmer weather.
Thank you again everyone - your support makes a huge difference.
Jennie
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Otterfield
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Good luck - it may be a rocky road from time to time, gvhd treatments are improving all the time, you seem determined and you have a loving partner to help you on your journey …. you look pretty well set to me 👍I’ll look in from time to time to se how you’ré keeping.
Thank you. I notice from your previous posts that you have had an SCT. I do hope you are now feeling well and enjoying good health. I know it will be tough but I want to live to old age!
Feeling pretty well, thanks.I was fortunate enough to have a good team in the hospital, a brilliant team at home, and the belief to fight when necessary.
Oh Jennie, you go girl 👍 we are all here for you, so I am sure you will keep us all formed as to your progress.Sounds a bit of a journey though, and twice a week, although my daughter is going to start drug trials at the Sarah Cannon research institute for her Parosteal Osteosarcoma in her lungs, and her journey from Somerset to London is also going to be quite a trip, but like you she wants to be able to get on with her life and young family.
Hey Jennie, , always here if I can assist you in any small way. Just to say though it might go against the grain, it might help you to try and gain a few pounds if possible in the lead up because from my experience most folk shed a stone or 2. In fact it can be an extreme weight loss programme for some like me, (who needs Fat Busters) and I wished I'd had a bit more fat in reserve. Hope things progress well for you going forward.
Thank you for this tip Chris. I lost loads of weight just before I was diagnosed (I was all bones and couldn't even sit on a dining chair comfortably) but I have regained some of it on Ruxolitinib. I will take your advice and try to fatten up some more. I have a good appetite at the moment so I will make the most of it. You are right that it goes against the grain though - like many people I have spent years trying NOT to gain weight!
I know how hard it can be to weight gain taking 2-3 years to gain 2 stone its sometimes harder than losing it for some of us. But even a few extra pounds could help you. However if not then don't worry because it is what you are and you can't lose weight you don't have ! More importantly if youre in good shape generally all to the good. Hopefully when it happens it won't be an issue for you.
I didn't think I was too bad though I was a stone under my life weight and had no time to increase it because things happened quickly. My weight loss was largely because of the severe GVHD and BK Virus (latent virus that can flare up post transplant when immunosuppressed) but as Crapaud said they're always researching ways to minimise the after effects. Then again not everybody gets troublesome GVHD and it can be very mild , say a minor rash on your leg, arm , torso, hand.
Also I must add the hospital fare didn't help (the goat curry was ok!) and I got many of my meals from the on site good old M&S which my wife was permitted to microwave on the Unit.
Thank you again Chris and I hope that your GVHD is no longer troublesome. I know I may have to face illness and discomfort as it comes but I am taking it step by step, as to think about it all it one go would be overwhelming.
Please keep on with the "inane ramblings" - it's all good as far as I'm concerned!
Remains active but my experience is extreme, thankfully the worst is well behind me (fingers x'd) , as you say one step at a time and hopefully with a fair wind things will pan out in your favour. Thanks for your vote of confidence regarding my ramblings, I tend to go on a bit but as the late Mr Everitt used to quip 'it's all in the best possible taste'.
Hi Otterfield,Your experience sounds very similar to my own.
I'm a bit further down the SCT path than you, I've got a donor (my brother), and I'm hoping to have the transplant in January. It's the biggest decision you'll ever have to make but personally speaking I'm glad I opted to go for it. Good luck, best wishes, if I get any top tips along the way I'll pass them on!
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Thank you for webinar 
Informed, thanks to you 
Thank you for giving hope
Do you have a contact / support person at your hospital? 
