Hi boxer, I was diagnosed with mm 13 months ago. Paraprotien of 64, not smouldering! I'm 46 and have a young family. Please don't feel sorry for yourself, you may have a long time to go! And I did let myself go but after treatments you will get, hopefully some way down the road, SCT, chemo. I hade my SCT in April. Please be fit as you can while enjoying yourself. I'm going to run a half marathon early next year, maybe a full by May. Don't let yourself go just cause you have a horrible disease. There's a pleasure to be had at coming through hard times and still doing what you enjoy. Despite my SCT I now run 5 miles whilst pushing Elsie in her buggy along the canal. Magic, ducks, dogs abound. Push yourself!
You lucky b@rtewart! Had my stem cell transplant and can't see what's before me.. Never needed glasses for reading before but do so now. Can't tie on my fishing flies without asda's finest. Up side, I am still fishing . Thought I might have more time to do so but unemployment means I'm looking after the wean. Harder than working. I do have more and darker hair than before and I'm told I I may get improvement in my eyesight so will settle for that!
You lucky b@rtewart! Had my stem cell transplant and can't see what's before me.. Never needed glasses for reading before but do so now. Can't tie on my fishing flies without asda's finest. Up side, I am still fishing . Thought I might have more time to do so but unemployment means I'm looking after the wean. Harder than working. I do have more and darker hair than before and I'm told I I may get improvement in my eyesight so will settle for that!
Hi Dawn,
Like myeloma, all companies treat their employees very differently. I was diagnosed a year ago. Apart from a couple of hospital stays for pneumonia and PE's, both life threatening, I worked full time as a business development manager. I had a SCT in April and was back at work full time by mid June. And made redundant in September. A very well managed process I could not challenge despite advice from a judge. So I lose my health insurance, death in service benefits etc. I am 46 and have a one year old, Elsie, to provide for. I had even added to my education in my own time, graduating with a msc in accounting and finance. If a company decides that the business does not need you, there is actually little you can do about it. And I would recommend holding on to your job no matter what as, if you are well known in an industry as I am, it proves impossible to get full time employment as they all remember my bald and sickly after my transplant. I am now Elsie's carer and it a damn site harder than working : )
So my advice is hold onto what job you can or, like me, consider selling your house before bankruptcy.
Hi Dawn,
Like myeloma, all companies treat their employees very differently. I was diagnosed a year ago. Apart from a couple of hospital stays for pneumonia and PE's, both life threatening, I worked full time as a business development manager. I had a SCT in April and was back at work full time by mid June. And made redundant in September. A very well managed process I could not challenge despite advice from a judge. So I lose my health insurance, death in service benefits etc. I am 46 and have a one year old, Elsie, to provide for. I had even added to my education in my own time, graduating with a msc in accounting and finance. If a company decides that the business does not need you, there is actually little you can do about it. And I would recommend holding on to your job no matter what as, if you are well known in an industry as I am, it proves impossible to get full time employment as they all remember my bald and sickly after my transplant. I am now Elsie's carer and it a damn site harder than working : )
So my advice is hold onto what job you can or, like me, consider selling your house before bankruptcy.
Hi Dawn,
Like myeloma, all companies treat their employees very differently. I was diagnosed a year ago. Apart from a couple of hospital stays for pneumonia and PE's, both life threatening, I worked full time as a business development manager. I had a SCT in April and was back at work full time by mid June. And made redundant in September. A very well managed process I could not challenge despite advice from a judge. So I lose my health insurance, death in service benefits etc. I am 46 and have a one year old, Elsie, to provide for. I had even added to my education in my own time, graduating with a msc in accounting and finance. If a company decides that the business does not need you, there is actually little you can do about it. And I would recommend holding on to your job no matter what as, if you are well known in an industry as I am, it proves impossible to get full time employment as they all remember my bald and sickly after my transplant. I am now Elsie's carer and it a damn site harder than working : )
So my advice is hold onto what job you can or, like me, consider selling your house before bankruptcy.
Hi Suzy,
Glad your husbands rash is calming down. I am getting amazing treatment in Scotland – saw a dermatologist within a week of asking to see one! Would have struggled for that on my private health care. But still scratching. Skin biopsy for me next week. Good advice on any place that's warm. I have started running again but the itch becomes wild after a couple of miles. Joggers take note. I just told the guy who asked what I was doing scratching so much on the canal path with my top off in the rain I had scabies. He ran faster than me. LOL. I'm due in warmer climates than Scotland next month – not hard at the moment – but anyone planning trips close to a SCT, or as close as the consultant will allow, should be aware if you're as itchy as me it may not be the best!
Keep smiling at the funny things, there's enough other stuff to worry about! Stewart
Hi, I hope your husband has got better over time? I had my transplant on 26th March. I had a rash appearing on my discharge 16 days later. I have never stopped scratching since. Legs, arms neck and upper trunk are the worst. Please tell me it suddenly just goes away? I am applying creams, taking tablets etc as prescribed by my dermatologist but it's driving me mad and more so my wife as I keep bleeding on the sheets and pillow cases.
Hi Alex,
Got you're message, delighted you are coming out the other side of the transplant. I had mine on the 25th March, been sick since! Good for the weight loss – a stone and a half so far – but not so good for the hair cut. A Bruce Willis look now in place. Just beginning to eat more regularly and was pleased to be home. Missed Vanessa, despite the nagging, and Elsie, who is great. 7 months and full of fun. While still not feeling great I am improving and hope the next week or two will see a big jump forward. In particular I have a very bad rash – on my head, shoulders and arms. Like very ichy sunburn as a kid, I haven't slept more than an hour in the last 3 weeks. Apparently it's normal and will go away.The soner the better. I had planned on rushing back to work – I workeduntil the day before the transplant. Decided a slower pace of life might be better for the time being, enjoy family and friends first. Hope you're doing the same.
All the best, Stewart
Hi Maureen,
Sorry to hear of the diagnosis. I am still coming to temrs with it but seem to be getting there. The treatment I have had in the Western General in Edinburgh can only be described as first class. Ask lots of questions of your consultant, they are only too happy to help. And try not to get down too much – there is always a positive to be taken. Hopefully a good reaction to tratment will buy a reasonable remission period. I am only finishing my 4th cycle of the Myeloma XI trial and hope the stem cell will go ahead in spring. I'll see how that goes. There will be a few bumps along the way – I'm just out from a week in hospital after collapsing last week. Turns out clots on both lungs and a little pneumonia can be common side effects of treatment. Actually, worst part was one of the other patients was then diagnosed with flu and they put the remaining 3 of us in isolation. My Christmas party was dry in the company of two octogenarians. Wild!
Vanessa still finds it hard, particularly when I collapse, but is definitely beginning to see up sides. Enjoy all the good moments and try not to focus on the down sides too much. There are many people getting years of remission now, that's got to be the target.
Try to enjoy Christmas and take every day, good or bad, as it comes. There will, surprisingly, be a lots of good ones. And if you want to kick off just do it, it does make you feel so much better after. I live in Edinburgh and follow Hearts, I have enough down sides from that to keep me going so it's positive stuff for Vanessa, Elsie and I. And you too!
Good luck in the journey.
Hi Jet,
A list of blogs in one place, just what I was looking for. I will have a good look through and follow a few, only recently diagnosed at 45 so hoping to learn from other peoples real experiences – doctor said the bone marrow biopsy would just be uncomfortable. Aye, right.I'll be watching him in future.
Thanks for the info, hope your well.
Stewart
Hi Eve and Megan,
Thanks for the advice. It's hopefully a long road we are all on, I'm beginning to realise that, initial reaction of doom and gloom lifting. I will investigate the nurses thing and encourage Vanessa to join in, I really think there will be a big benefit for her discussing the disease with others.
We will all hold tight and carry on, good things will still happen. The James Bond movie was great tonight. Little things are important.
All the best, Stewart
