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Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

New to the group

Hi everyone finally got my act together and got myself on here. I'm 2 years post stem cell this coming Sunday.

What tips does everyone have for beating fatigue?

I've gone back to work 4 days a week but reducing it to 3 soon, I'd like to do less but still not won the lottery. Still get pangs of anxiety at times too, any tips for getting through that without any meds?

Comments

  • Hi Jonni and welcome to the Forum.

    It's great that you have joined and hopefully you can share your experiences with other members and likewise maybe someone can pass on tips re fatigue and anxiety which you mention.

    Fatigue was a huge issue for me just after transplant, I was 63 years old at transplant so maybe that had something to do with it. I took the opportunity to retire.

    I'm just over 3 years since transplant, I still get tired and have to decide occasionally to have a day of rest. I think you need to know when to stop and take a rest. It sounds like you are doing this by reducing your working days. I think most people post transplant will say be patient and try building up strenght gradually. Exercise and walking are good, there may be some groups locally you could join. I joined a Macmillan walking for health group and go walking twice a week. The walk is within everyone's limits and is also a social event which may help with your anxiety.

    I had feelings of anxiety and loss of confidence, my wife got me to join a local (Stockport) cancer care group. I didn't think it was the place for me but it turned me around, just meeting others, talking about transplant, complimentary therapy and counselling, you may have a place somewhere in your area.

    Good luck, Peter
  • Peter,

    Hi and thanks for the advice.
    Didn't think I'd be so tired but I think you forget about things like that whilst you're going through treatment and getting on with things that it comes to the point where you've got to rest.

    In hindsight I should have gone back less days and built up to more, but that's the logical answer. retirement would be great but I think I'm pushing my luck at 40.

    Think I'll look at groups or other therapies. The NHS is great at getting you through the treatment but once you see them less and less you don't realise what a great support network the other patients are.

    Failing that a good long holiday would do the trick.
  • Hi Jonni,

    I'm two and a half years post transplant and have just gone back to work full time. I've been working from home on light duties up until now but things are really picking up.

    It takes a bit of getting used to again doesn't it. I've also noticed I get tired easier and find myself needing to take a break from time to time. I don't do anything too strenuous but even driving to sort of distances I used to makes me tired quickly.

    It's good to be back doing something constructive at last though as I feel like I've been away from the day to day hum of work for too long. My employer has been fantastic and have adjusted my role accordingly so that I could ease myself back into work. Thankfully working for a large company has enabled a bit of flexibility rather than going straight back to my previous role.

    Even now though I'm not working at the pace I used to. I think something like we've all gone through gives you a new perspective on life and spending every day with your nose to the grindstone is possibly the way to an early grave.

    It sounds like your idea of a holiday might help. Maybe you need to take a break from things and relax, unwind and freshen up. Then see how you go when you go back to work after your holiday. I guess reducing your days depends on how it might affect you financially, but perhaps a change in role is possible?

    Take care,

    Steve
  • Hi Jonni,

    I'm 16 months post-transplant, and started a staggered return to work about 9 months ago, which got me as far as three and a half / four days a week before I realised it was too much, so I moved to three days a week for at least the short term. My work were great up to a point, but insisted that to work part-time I'd have to move back to an old role that doesn't motivate me at all.

    I argued, lost but am now looking at it more philosophically, in that in a way I'm being forced to do what for me is a much 'easier' job, which is admittedly less stressful and probably what's best for me right now – even though I've found it hard to accept that I can't be at full tilt to the extent I was previously! I think I'm at the right level for my energy now, and am trying to be patient about finding a more fulfilling way to earn enough to pay the mortgage...

    Peter's and Steve's advice is (as ever) excellent. I had some counselling, which was helpful for my particular challenges (eg managing expectations), and am now doing some life coaching, too, which is already giving me a confidence boost. For me, sleep is a huge thing in terms of fatigue; I'm really knocked out if I don't get as much as I need. My doctor's always been keen to prescribe (non-addictive) sleeping pills when I've not been sleeping regularly, and I'm much more wary of staying up late, etc.

    Good luck with it all; and do please let us know if there's anything you find particularly useful.

    George
  • Thanks for your comments they've all been really helpful.

    Since originally posting I've had 2 hospital stays, once with shingles and secondly with a kidney infection, both a hoot...not. Still suffering some shingles after effects, namely my forehead being numb and an irritatingly dry eye.

    However I've made some changes, wanted a career break yet my employer, the DWP felt I didn't meet the criteria. However I know work just 4 hours a week in the short term and so far I'm enjoying it.

    Been getting back into enjoying life, if I get ill I get ill, just like everyone else and it's taken a while to get back into that mindset.

    Also had my first proper break away, a week in Sardinia, just what I needed.
  • Sardinia – wow... My wife's Italian and has promised she'll take me one day!

    Hope things are going okay, jonni? Sorry to hear about shingles etc (that knocked me out earlier this year, too).

    All the best.
  • Hello Jonni! Welcome to the forums. I'm sure there will be plenty of people here with some great advice. Make sure you read through the different threads as I'm sure that your own advice will be valuable to others too :)

    Wishing you a happy New Year

    Sam :)
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