Post transplant story

Great post Jackie from Barrow.

A good number of folks who go through SCT and out the other side will often look back and reflect. I reflect on that very very scary ‘talk’ with the SCT team…… and yes, it was not as bad as the team said it would be but I have some other treatment ‘left overs’ but looking at the big picture these are acceptable challenges compared to the worst result it could have been ((hugs))

Thank you Jackie. I have double hit lymphoma and am in remission for the second time but going for an autologous SCT on the oncologist’s advice. I had my “harvest” yesterday and it went well. A few tests and the PET scan next week and SCT will probably in 3 weeks at UCHL. Obviously everyone’s case differs, but I had been anticipating months of isolation and  incapacity so your post is giving me more optimism. I have been told 2-4 weeks in hospital so it sounds as you have responded very well. I am lucky to live near the hospital and used to self monitoring while neutropenic so hopeful I might get out early. I am also hopeful as I really like my job and prefer not to be away too long. Of course I will follow advice on what is best. The fact you are able to be so active so soon after is also great news. My old rescue dog died last September and I have held off getting another because of my condition but, who knows, I might be able to think about it if this goes well. I hope everything continues well for you. All best wishes. 

Hello again, I will keep my fingers crossed for you to have a smiliar experience to mine. I have to say that for me personally working on a need to know basis works for me. I am a retired nurse because of this I made the conscious decision not to research Myeloma in anyway. I only ask questions about things that affect my day to day living. It's sufficient to know that blood results and scans ect are OK, some people thing that I am denial, I'm not but equally I do not want a life defined by my diagnosis. I am Jackie who happens to have Myeloma but is living life.

I don't know what I would have done without Reggie, my constant companion best bud and reason to go out every day. If you love dogs I would get another when the time is right.

If I can be any help please message me and I'll do my best to help xxx

Glad you are looking back with a positive outlook. I kept a diary from the day before my SCT and was determined to have something positive to put in each day. Apart from one day I managed to do this even though the day my body fought back and I had to be sedated I managed to do this even if it was 10 steps rather than 9. As people have said its not a walk in the park but having people on here to  compare feelings and symptoms was a real help. Onwards and upwards everyone. 

7 years tomorrow :-)

jackie

Thank you for sharing and 7 years is awesome xx

Thanks everyone, I’m in the midst of it (transplant day tomorrow!), so positive stories are a great tonic x

Coming up to 5 years 8 months on from my second Allo and 4 years 9 months in remission (not that I keep tabs on this ) from a condition that in 1999 I was told I would never be on any prolonged time of remission

Good luck for tomorrow, I'll be thinking of you xx 

Hope it went well and you are feeling ok. I am in hosp at, with a throat infection but hoping for my sct end Aug. Would love to hear how you are getting on. Which hospital are you at? I will be at Addenbrookes

keep positive

What. Great positive story. My sct is planned for end Aug so this is very helpful to me