This topic contains 9 replies, has 8 voices, and was last updated by 
ozzy 12 years, 11 months ago.
Hello! Diagnosed with myeloma in May 2010, after finding myself in spinal cord compression. A big shock, as I am a nurse, and had not even considered myeloma as a cause of my problems. Mind you, neither did my GP! Have been through CDT and high dose chemo and am now 6 months past SCT. So am feeling not bad physically altho worried about return to work as it is such a tiring job, physically and emotionally(I work on the District). Don't know why I haven't joined the forum before but I think I could only cope with knowing and thinking a certain amount about the disease. Now I am feeling better, I am also experiencing mixed emotions about this. Where do I go from here? What is normal? This is a very weird time, and I guess a bit scary. I am 95o/o in remission, which is great, but due to see consultant in about ten days time for next results. I am generally very positive but now I need to move forward, but am not quite sure how. Would like to travel again but worried about how I will be, particularly as regards tiredness. Thanks for listening!
Firstly Welcome (?) to our group and the forum, not a group you no doubt wished to join but here we all are.
I am 1 year post SCT now and I am leading a near normal life. I get tired sometimes in the afternoon, when I just sit down in my reclining chair and have a kip>:-) However, I am not really sure whether it is old age, I am 69, or Myeloma. I am in partial remission my PPs being 2.4 at the moment, 33 when this all started in July 2009. A phrase often used on this site is ?listen to your body? and I think you will find that good advice.
We had a really busy travelling year last year and we are planning a trip to Spain, to see my Brother in Law in Mar/Apr. A Myeloma diagnosis need not be the end of the road.
Kindest regards ? vasbyte
David
Hello Heather
It's a funny place to meet people, I too am a nurse and am now 4 months post sct and thinking about the return to work, it's not an easy prospect I may say but I know I have to go back, I'm not really one of natures housewives and the ironing pile looks more intimidating than the boss. I know the emotional draw to work is strong but the prospect of the stress of it is terrifying.
I think the rudderless feeling after the high intensity treatment is hard to get used to and adjusting to a 'new' normal is very difficult. Having to get on with the same things as before when you feel emotionally so different is almost crippling.
I am planning holidays, I think that this is going to be the only way I can move forward. By having goals which I can set. So I'm interested to hear how you get on, do keep in touch.
Helen
Hi Heather
A warm welcome to the site:-D I had my Transplant in Dec 2009 so I make that just over 2 years Post Transplant?
Diagnosed Jan 2009 went on 5 cycles of CDT then stem Transplant dec 09 but went on sick may 09 for a year back at work (Lidutiesie's) may 2010, just started doing a little bit of my old job (forklift driver/Pendant crane driver) on a dock so it pretty hard and fast work, now wishing i had took redundancy in 09 🙁 or is that just me after the xmas break :-S dont know will let you all know later he he.
As for travel I still fly abroad and throw a few week ends away over the year just need to know it wont be a full high impact type of holls.
Good Luck on your MM Journey.
Tom "Onwards and Upwards" xx
Hi Heather, it is good to hear from you, and I hope you are finding the comments useful. I am only 6 weeks into my treatment, and I am feeling a lot better than I did a month ago. It is interesting to hear your comments about work. I have my own firm, and have been struggling on, keeping things going for now, but I accept that if I have a transplant I may not be able to work at all. I have decided that I will sell the firm if I can, and retire – I have no desire to see out my last years sitting behind a desk at work when I could be doing other things. Did you give up your job completely when you started treatment? Why do you want to go back? The problem is that I guess we all need some money to survive, and so far I have received no real financial advice. Travelling sounds like a great idea, and it doesn't have to be tiring unless you intend to climb Mount Snowdon!
I would be interested to hear from you, Regards, Chris
Hi Heather welcome to our merry band ! Good to hear your treatment has gone well so far and I remember that lost feeling after my sct 4 years ago It does get better though but remember you have been through a huge physical trauma as well as having to cope with the news you have myeloma. I was diagnosed 5 years ago after a year of agonising back pain which turned out to be 3 destroyed vertebrae and extensive bone damage everywhere else , they were amazed I was able to walk A spinal reconstruction meant it was safe to let me out of the wheelchair and I had my sct 6 months later Try and take each day as it comes and life will begin to be more normal if different I suppose you would be able to have a staged return to work if thats what you decide which would give you some time to adjust In my case it was not possible to return to work as I worked in family support and child protection , a lot of outreach work, and my compromised mobility made it unsafe as not everyone was pleased to see me !!The other aspect which made it difficult was the high level of pain killing drugs which can make me more tired Chemo brain played its part too , my memory is now dreadful!!Perhaps a chat with your manager or HR would put your mind at ease I hope the NHS looks after its staff in situations like yours!! As others have said travel and enjoy life again but remember to listen to your body and not overdo things especially this early Good luck and please let us know how you get on Sorry if this post is a bit waffly! Bridget
Thanks to you all for your messages. It is really good to hear your positive stories, and to know that the way I'm feeling is not just me! I am in discussion with work, and am planning a return doing office work initially, but really don't know whether I will cope with my 'proper' job again. Will have to play it by ear, but i have never done office work and will really miss patient contact. I can retire in2.5 years and part of me is wondering whether to go earlier if it was possible. My husband is not due to retire for 4years however, so am not sure. So many dilemmas! Also want to move house to be mortgage free, but how soon?! Don't worry, I don't expect answers, just thinking out loud! But comments gratefully received. Bridget hopes the NHS looks after it's staff, well, occ health have not been in touch for nearly a year, and my colleagues are going off with stress, so can't imagine it will be an easy ride back! Helen, I will be planning holidays, and it's lovely to hear Tom and David regularly go away. So thanks again to you all.
Heather x
Hi Heather,
I have to ask where have you been,no insult,but people like you can be such a help on a site like this,we know from other people the NHS are not the best when it comes to there own staff.
If you want a honest answer from me,both of you retire as soon as possible,
I know what you are thinking,it,s not about money it,s your quality of life,do not have any regrets!!!!,
Life is to short Eve
Hi Heather
For me staying employed and being on Sick was for me a Goal I had, to get better and back to work to show myself I can and will do it (am a stuborn cuss lol) it warked and I went back after a year off on Light dutie's still doing those "Light Dutie's" and to be honest am getting ready for giving work up 🙁 dont get me wrong the company and the lads i work with are great and will not allow me to do too much (bless) but am just thinking now is the time to leave? only 56 but I am thinking thats the way to move on 😀 sell the house and try and get a Flat or Bungalow from the council, stick the money in the bank and enjoy life 😎 , but we will see 🙂
Love Tom "Onwards and Upwards" xxx
I was diagnosed in January 2010, had 6 months CDT and my pp level went from 42 down to 5. I had a stem cell transplant in January 2011 a year almost today. I was working until I had a blip in my treatment in the June 2010, spent 3 weeks in ITU and didn't return back to work June 2011 5 months after transplant. It was my goal to get back to work I'm 58 now, but now I'm back still on a phased return I'm up to 6 hours now, I am finding it very tiring and with the many infections I seem to pick up, when I can't get to work I have to take unpaid leave! So don't hurry back to work its hard going and very difficult to get up from bed on these dark, cold mornings when you still feel tired. I like you Tom are wondering if I made the right decision to return to work. About the holidays – I am hoping this year to go on a cruise had the ok to go on Tues from the transplant doctor at the Univ Hosp Cardiff after I've had all the childhood jabs!!!
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