Thanks Dawn! 
for a good recovery 
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I never thought life would get back to normal but it gradually does, I am just over 3 and a half years post SCT and living life to the full , I am a little more cautious with germs, certain foods and sun exposure but I travelled abroad about 9 months post transplant and have not stopped since. I’ve done the Manchester 10k two years in a row and am doing my third in 2020 accompanied by my donor which will just be amazing. Keep your spirits up, there are down days but I find my highs are higher than ever before …good luck with your recovery 
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Dear Lisa, it’s so wonderful to hear you are reaping the rewards of your sct, it will be a massive boost for goody to hear your story. I read your profile this morning and was not to surprised to read of your long and winding road to diagnosis, I was impressed that you went with your instincts and got blood test rather then just excepting what your go was saying. I was talking to someone at my clinic just this week with aml who had bleeding gums who got fobbed off by the gp but decided to go to the dentist who instantly knew there was something serious going on and sent him back to gp who arranged blood rests. The rest is the same as your story, so nothing has really changed and it’s important that as patients we become our own best advocates and follow our instincts. I wish you all the best and would like to thank you for your fundraising ect.
Best wishes
Alfie ppcl myeloma
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Hi Goody, yes it is weird post-transplant, but you will get there 
I’m nearly 8 years out now, and pleased to say that I’m enjoying life. Like many on here have said already, take it at your pace, and it’s great to have things to look forward to The post-transplant journey isn’t always straightforward and can vary a lot as we are all different, but you can do it Best wishes for your continued recovery.
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That’s amazing to hear that you were able to enjoy a holiday 9 months post SCT. It’s also great to hear from people who are so many years post SCT and not regretting it and not had too many long lasting side effects I hope. Go you ! Marathons aswell! Thanks so much for replying gives me hope listening to everyone who has been through this.
All the best x
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Thanks Joanna, amazing 8 years post SCT so good to hear! Not looking forward to my down days although I know I’ve got lots more good days to come 
Wish you all the best x
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Hey dawn, wee update…Until a few days ago there really was no difference health wise …then I got mucositis so just been upping my pain meds over the last few days. Now half my face is swollen. Getting a scan today. It’s either a blocked salivary duct or infection. I’ve been rigorous with all my mouth washing etc so I’m a bit gutted that it’s getting worse. It’s tiring and obviously painful but it’s not the worst thing in the world and it will get better. Just need to get through these next few days and hopefully I’ll start eating again. Currently on IV food bags as I found the peg feed unbearably tickly lol just couldn’t get used to it so now everything including my meds are done through IV until I can swallow again.
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Hi Goody, it sounds as if you are going through a really tough time, take care and keep posting how you really are, we are all here to support you.
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Hi Goody. Mucositis is terribly painful. I also had two other infections, including parainfluenza, after my SCT, so was on a morphine drive, and had oral top ups as, when I tried to drink, I felt as if my head would explode. I hope they can sort your added problem out. You are doing well being able to post on here as I was mostly incoherent or asleep for a couple of weeks after mine (which caused huge merriment amongst my lads as if i started to talk about drugs they would make comments about the one in the family who was on drugs!) Keep focussing on getting home to your family xx
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Hey! Just another wee update … mucositis had indeed been a sore one and I’m also on a driver with tops ups when needed which has been great. The staff have been amazing, can’t do enough for you. My cheek is still swollen from the ulcers inside but parotid gland went right down so no need to do scans as they feel it was a blocked duct after all. Trying really hard to focus on my family and getting home, it’s all I think about. Especially when I got the news that my neauts and WCC have went up .1 of a point 
moving in the right direction. I’ve not posted everything that has happened since I’ve been here but once I’m fit enough I’ll post again about my recovery in hospital and at home. Thanks again everyone x
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Hi Goody, we are really looking forward to the unabridged version of your recovery because that will mean you will be fit enough to post it. Take lots of special care of yourself.
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I do distinctly remember the neutrophil and white blood cell count “countdown” to discharge.
We had a lovely Irish nurse on my ward who made me tea at 3am most mornings and I cannot remember her name - not sure what that had to do with anything? And a squeaky door that I got my long suffering wife to bring in WD40 for me to fix after dark - again very important at the time.
My sore mouth (ulcers etc) first appeared on UKALL14 and persist under conditions of tiredness or stress to this day - right now the mouth washes are going in 3 times a day - my quest to retire continues.
You have my empathy and understanding
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Hi Robin, I am interested in hearing more about your quest to retire.
Thanks Robin. A squeeky door, I’d have to have that sorted asap too! They decided to follow the same protocol as ukall14 for me. One of the chemos I didn’t get as I had tki meds to target my gene mutation instead of that chemo but everything else the same. Sorry to here your still getting problems with ulcers , hope the mouthwashes help? I’d had never had 1 ulcer before starting all this, I’m a bit worried too that I’ll keep getting them now. My counts are on the up again. WCC 7 was 3 yesterday! Has been stuck at that for a few days so that was great to see
Hope you get to retire soon and I’m sure you will enjoy every minute !
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On Bodly Scott One the staff had gotten used to the the squeaky swing door into the male end of the ward. Their obvious confusion at the now silent door helped pass a few more hours of my 5 week seclusion.
On my third month block of chemo I developed an allergy to Peg Asparaginaise. This resulted in going into anaphalactic shock, with my skin feeling and looking like when I crashed my tricycle into a stinging nettle bed aged 6! However this time instead of calomile lotion IV adrenaline/cortisone was needed.
I too had never suffered from mucositis but on UKALL14 the left side of my tongue split and this has haunted me on and off for over 6 years. But this is a small price to pay and I know of at least one other sufferer of Chronic GVHD who could only drink milk when spiking.
You’ll laugh but at one point I found a large tot of whisky before eating dinner helped! The point is that you must eat, no matter how painful, as it was I lost 4 stone. I now remember I also made my throat quite sore by swallowing orange segments whole. Daft!
Did you know that you can also get blood cancer if you are the owner/manager of a small business? Just as the cancer destroys your health it also destroys your business and the lively hoods of those you employ.
My retirement depends on my ability to sell up, and right now, albeit a bit of a fire sale the planets are finally aligning
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Oh, Robin, thank you because you really graphically show the side issues and losses of a blood cancer diagnosis that are so often not talked about. Financial stability is so important and it can be so scary and stressful now and in the future, as you say your retirement, when there are so many other practical, physical and emotional things going on for you. That is without considering the practicalities of a business, the knock on effect of those you employ and all your and their families as well. Then your clients/customers, suppliers etc. I believe Citizens Advice, some business advice services and Macmillan might be of advice and assistance. Please let us know how the sale goes and the issues that arise for you.
Goody, have they tried you on G.-CSF to boost your counts or are they happy with the way things are going?
And Erica thank you for your wise words. As it is 6 years on, the business pretty much failed within 12 months of my diagnosis.- despite my wife giving up her lifetime career as a nurse to run it. Macmillan is a good suggestion: I will talk to my wife who now volunteers for them as a direct result of my diagnosis!
My intention here is that others may benefit from my experience, however opening up is sometimes not as cathartic as I would have expected.
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Robin, yes, I also hope others will benefit from my experiences, but please only share what you are comfortable with. This site is also here to support you.
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Thanks Robin! Trying my best with eating food now. I seem to be turner a corner with my mucositis now my counts are up. Hope you manage to get everything sold up and enjoy your retirement x
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