SCT Success Stories

You've got me going now. Even recently I've experienced telling people that I've had a serious illness and get the response that they hope I'm feeling better now as if it was a quick cold. Now I say 'ongoing health condition'.

Tessa

I remember something either Denis Norden or Frank Muir said once. That faced with an obvious crisis like a traffic accident we rush over and ask "Are you alright" when quite obviously you aren't. He reckoned what it really meant is 'i can see what is happening but is there any slim chance that I don't have to get involved.'  

That's stuck with me for years and I can usually tell when people are trying to look willing without doing anything useful. 

Tessa

Good morning Mark and yes, some big nodding heads going on.

The pre and during SCT support and information tends to be good. Then you have the regular clinic appointments for the few month post SCT......then you find yourself cast adrift on the sea of post treatment life and you feel at times you don't have a life jacket, paddles and a compass to help you navigate this.

I have to say that I was very lucky as my Macmillan Heamatology Specialist Nurse was on the end of the phone/text when ever I needed help or to ask questions and I even had the mobile number for my GP. But it is hard to find the correct balance in this. Is it just my body finding its new rhythm or are we fixating on every little issue that comes along and over thinking things. That 'what if's' do come in......but I can say it does improve over time.

I am 3 years post SCT next month and I now can say I don't think about this stuff but due to being around the site I can not escape it.

The post SCT journey is full of physical and mental challenges and traps. There is some information out there but it will be general like Anthony Nolan Trust - First year post SCT over the past year or so we have tried to collect information in the Life after a SCT - A Survivor's Guide thread. First hand information that would help those get through the post SCT years but as Tessa has said a very high percentage of folks will move on from the site and rightly so, to move on with this new life they have been gifted to live.

So please keep putting thought and experiences into the Survivor's Guide 

Tessa, on the whole, all my family and friends have a complete understanding of what my journey was like, the seriousness of the treatments and how long it will take me to come through the physical and mental trauma.

But you do get them - "you look great"       "good you are moving on with life"      "at least you are not left with a big visible scar" ......I smile and move on :) 

Hi all just an update, my cold lasted three weeks but I'm ok now, things I've now only just noticed since My SCT 12 months ago, the jaw no longer is sore and finally my ribs are not sore anymore. A year ago I felt like I'd been on the floor and a football team had give me a good kicking.

My appetite is back agh! And weight is now creeping up.

I played golf on Tuesday and won! I'm being careful with the sun factor 30 keeps me covered for 4 hours.

i have been doing Zumba tone sessions which has improved the muscles in my arms and legs. Mentally I'm doing ok after my last good chat with my consultant who inset every three months.

Im not as tired now during the day and next week I am playing in a festival so that will 6 rounds of golf over 7 days , that's 24 hours of walking.

im back doing the things I did before, I'm enjoying every day and I don't turn any opportunities down to go and enjoy myself. We've just been island hopping round the Ionian islands had a great time. I've waited two long years to do this,treatment started in 2016.

So I think I'm at the end of the tunnel it's not been easy but I survived, I've been in remission 12 months now, my consultant has been very good at putting my mind at rest.

So may it continue 

Sue 

highlander, 

To all that contribute to this thread, I thank you. My haematologist has been very keen for me to join the CARDAMON TRIAL (for which I was registered on Monday 17/09/18), which means I have a 50/50 chance (chosen randomly by computer) of receiving STC in the future. Part of my reason for accepting a place on the trial, was the potential for me to help make a difference for the treatment for those who are diagnosed after me. 

I am reading many documents detailing the SCT journey, but the important thing, should I eventually receive SCT, would be to have access to a comparison of the symptoms/worries I experience, especially after returning home, from those of you on here who are different stages of that journey. I can't promise I will check in daily, or even weekly, but I will pop in update you on my journey and comment on how it actually unfolded, as apposed to how I was told/expected it would unfold. I will update "About Me" often, so you can see track my journey and experiences as I encounter them. 

So from someone who is just starting their journey, the insight here will be invaluable.

All the best

GDFB

Thanks GDFB, all information is valuable and a great way of supporting folks in their SCT journey and we are always around to help you out.

Hi again everyone,

I would like to thank Jessica Macmillan Online Community Officer in responding to my question so quickly, in which I asked if it was suitable to post information I found helpful with the rest of the group. Jessica agreed there was some very good information contained in the document and agreed for me to share it.

In sharing this document I hope that it gives others a better understanding of the SCT process, I know it is has for me. 

https://bloodwise.org.uk/sites/default/files/documents/stem_cell_and_bone_marrow_transplants_the_seven_steps.pdf

All the best.

GDFB

Thanks for this GDFB, I have been through this one a few times, great place to find good info on the SCT Journey.

hmmph , my hair looked like a mop before abvd,,identical after,, and again after auto , coarse , unruly mop,, coaxed the hairdresser into bleaching it for me,, so at least i’m not grey !

Hi Yvonne I've gone for the platinum look with very curly hair, everyone says I should keep it short we will see. I think Imlook like Harp Marx  ha ha