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Since my SCT in April last year I don’t feel normal.
I’m fed up of feeling ill.
I’m not a sicky person. I’ve always taken things in my stride but as I’m typing this I’m crying as I just feel rubbish.
I work full time and my employer is great with me but I feel like I’m taking the mickey if I leave early if I’m tired.
I hate feeling like I do. I don’t know what to do about it as I’m not ill I’m in remission and have monthly Daramumtab injections along with a Zometa infusion.
Oh well, try to carry on regardless.
Hello Ree2112
I am sorry to hear that you feel so low. I actually think that you are doing incredibly well to be one year post SCT and working full time. Credit to you!
I had my SCT three years ago and reached state pension age while I was in hospital (by some quirk of good timing) I am so glad I am retired. I do keep very busy, but doing stuff I want to do. It is a long recovery, during the first year you may feel ok, but everything is much harder work than it used to be. But, in my experience, it does get a lot better. But our bodies have been through a lot and are still being hit with powerful drugs, do be kind to yourself.
Hang in there, you have got over the first year, and working full time too. I think you are amazing.
Hi.
It’s ok to be fed up. It’s hard work dealing with myeloma day in day out. Working full time deserves a medal. I’m retired, keep busy but realise I’m so lucky that if fatigue hits I can rest.
I think there are times when the enormity of what we are dealing with just hits. Most of the time I can be as normal- whatever that is- as I can be but every so often, as you say, I too just get fed up. That doesnt mean I’m giving up!
I dont think I’m explaining this very well but you are allowed to be fed up and here is a good place to sound off about it.
You look after yourself. Take care.
Hi Ree2112,
Being a myeloma patient is tough, physically and mentally, including during remission.
One of the first things that I asked my doctor when I started treatment was: how many patients work full time? He said that very few do so. Some had already retired, but among those who were working, most go part time or stop working altogether.
I went on sick leave for the first few months, then gradually built up my hours again, but I couldn’t work full days due to fatigue. My employer kept paying me (although the rate reduced for the hours when I couldn’t work).
Although I am in remission, I have had side effects from eye problems (fixed a few months later with cataract surgery) and I sense that my brain fog is slowly increasing. As I need to really be at my mental best to my work, ‘full time’ became more and more difficult, and a misnomer due to the fatigue. I therefore came to a deal with HR to go part time and focus on less mentally demanding areas.
I don’t feel one twinge of guilt – and neither should you. I was open and honest from the start, and followed my employee handbook to the letter.
Do what is right for you, and look after yourself.
Regards
Rabbit
Hi Ree2112
Oaf, no wonder you feel the way you do dealing with Myeloma and working full-time! I take my hat off to you. I think it’s easy for us to forget what we’re asking our bodies to do, not least the psychological impact of this illness. I hope you rest whenever you can. Maybe your haematology team can shed some light on why you feel like this, or is it normal to be fed up one year post SCT?
Look after yourself.
Anne x
Hi Ree,
Please remember that it is ok to not be ok, or feel ok. You have a disease which is not kind to you or your body. Almost everyone I have spoken to with MM has had their life changed to some degree, and probably that life will never be exactly the same as it was before. I think most people progress when they come to terms with that. That is a harsh statement to make, but I found once I accepted the ‘new normal for me’, I was able to move forward.
Full credit to you for wanting to continue working full time, and of course you should if you want to while ever you can, but just let those around you know about your diagnosis so that they can give you a bit of latitude of your performance is not as good as it once was.
Keep your chin up, and make sure you get some ‘you’ time. Onward and upward!
Regards, Tony
Just read the title, didn’t realise it was me…
I’m even more fed up. After my SCT April 2023 the myeloma has reared it’s ugly head again. I’ve had a horrible tearful day.
I’m so tired. My pain is raging thanks for Oromorph.
I feel really let down by my own body as it was my own stem cells. Since I had the transplant I haven’t felt myself really but I can’t say why I feel ill.
Had an appointment Thursday at hospital but it was useless. I didn’t see my consultant as she was off ill but the 2 registrars that took her place. I wish they had cancelled me
Couldn’t tell me anything new only that my numbers are up to 12.6. A telephone call would surfice.
I have had my Dara treatment this past week and for some reason I’m tired after it. Well, it’s the small amount of Dex. But this weekend has been difficult to cope with.
Let me get one thing straight, I am not a woe is me person, I’ve got too much to do, but I’m finding it hard to accept. Very hard.
The fatigue is hard. Yes, I’m still working, but I’m not too sure if I will carry on when going through treatment.
I’m so lucky I have a lovely caring husband but I feel a failure to him with this bloomin’ Myeloma.
Moan over. Sorry guys.
Aww bless you ; you’ve been through so much and it’s understandable that you feel frustrated. That’s what this journey can do to you, stay strong. I’m quite new to this as I’ve just been diagnosed aged 56 and I’m on my third chemo and on my marathon but I want to throw you a little bit of some of my energy.
Am not surprised you feel like you do. You have myeloma and holding down a full time job. That must be exhausting with all the drugs as well (and all the time spent in having the therapy).
Cut yourself a big of slack and allow yourself to feel rubbish. I am retired and am in the position where I can flop if you want to. Certainly could not do all the stuff you do. Hopefully this will gradually pass and your remission will mean the fatigue etc will ease. Don’t give up!
Thanks both for reading my rant and please accept my apology as it is unlike me.
Since I wrote on here I’ve received an appointment with a professor who is a Myeloma specialist, in all aspects of the disease, at my local hospital. I’d travel to the end of the earth to see him if I get on a trial. Two days after I’m seeing my consultant. I am a busy bee.🐝
Work have been so understanding with me and I’m so grateful. They’ve had a stair lift fitted for me as I work on the 1st floor and sometimes it hurts me to climb the stairs, thanks to my broken vertebrae. See what I mean? The consultants I really can’t get over their kindness.
On and off I’ve been dealing with myeloma since June 2020. I was 53.
I am a feeling less frustrated and humbled that you taken time to reply to me.
I wish you both good health and happiness on your myeloma journey.
Big hugs xx
Hi all,
I’ve read all these posts and feel I can say I’m abit of an expert in mm now. I’m 59 and have had I for 10yr’s which to be honest I’m lucky as treatments struggle to go that distance. I’ve had 2 sct’s then put on leno that didn’t work so trying a trial drug for me now as running out of options. What I would say is your whole life has changed and it will never get back to where it was but if your able to accept the change then you can make a new journey for yourself and ur fam. Your body won’t ever be the same as your finding out and it is most frustrating but you can start doing diff things u never used to and accept it and life becomes that bit more bearable…I hope you are able to work something out so your not always feeling fed up.
Dazz
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