Hello, everyone! I was wondering if other people find that fatigue comes and goes. At the start, I had several weeks when I needed pretty much all the strength I could muster just to get off the bed and in the month between my first and second appointments with the haematologist I spent an inordinate amount of time just resting. Then I had a bone marrow biopsy, had the Polycythaemia vera (PV) diagnosis confirmed, started on baby aspirin and things improved a little for a few weeks, but now I am back to the utter exhaustion again.
During all this time it has been winter here - a very cold and wet winter - and early on my house was flooded in the heavy rains of the long rainy season and there is still water under the house (you can smell the mould downstairs and the paint has bubbled up), none of which helps, but I have so much I need and want to do (luckily I retired last year, so at least I don’t have the pressure of worrying about work any more) and just feel so fatigued that I can do practically nothing. It’s only two and a half weeks until I travel to Spain for my best friend’s wedding and I desperately need to be feeling significantly better by then.
It’s 10 days since my last venesection and I didn’t get the ‘flip’ that I usually get after having one.
Do other people experience fatigue that comes and goes like this? Have you made a connection with anything in particular over it? How do you deal with it? I have read all the usual advice about dealing with cancer-related fatigue, but nothing seems to be helping, so any more advice would be very gratefully received. Thank you!
Dear @JanetF,
Lovely to hear from you, although I am sorry to read how you are feeling at the moment! Fatigue can be a real battle and I understand from many people it can be quite variable without reason.
Are you able to reach out to your treatment team? Perhaps it would be worth a blood test to see how your levels are, especially if you haven’t felt an improvement post venesection. Are you planning to have repeat bloods before you fly in a couple of weeks?
It sounds as though you have had a challenging winter. Where are you based?
Hopefully some Spanish sun will be a nice boost but do reach out to your treating team in advance of your travels.
You are welcome to call us and we can have a chat about things, our number is 0808 208 0888.
Best Wishes,
Heidi J (Support Services Nurse)
Hello, @Heidi! Thank you for your kind and supportive reply! The plan is to have repeat bloods on Friday 20th straight before I see the haematologist (I have them done about 20 minutes before my appointment so we both have the results by the time I see her) so that there is time for a venesection if I need one either on the Friday afternoon or the Saturday morning before I fly out on the Sunday night. I’m based in Kiambu in Kenya (just outside Nairobi). It has been the worst winter and the worst flooding I can remember in the 12 years I have been here.
Actually, thinking about it, I could have a CBC done later this week, as it’s time for my quarterly B12 jab, so I’ll be at the outpatient centre and could ask one of the doctors there to write me a prescription for getting it done there. That’s a good idea!
One thing that I have thought about several times but not asked before is whether the support line has a number that can be called from outside the UK. I usually use Skype for calling landlines in the UK, but you can’t call non-geographical numbers (like 0808 ones) with it.
Hello @JanetF, I’m really sorry to read of your fatigue. I know it well, as you know. Something that popped into my head was your mention of it being winter there—is it grey and cold enough there for you to get SAD? I used to get SAD terribly in British winters, but I’m unsure if winters are similar where you are. Perhaps the mould isn’t helping either!
I do know what you mean about fatigue coming and going a bit and sadly I haven’t been able to figure out any pattern for myself, except perhaps stress exacerbating how knackered I can get. I get an energy boost after phlebotomy too so I hope that works for you this time for your holiday.
Another thing I notice in myself is that sometimes it feels like my body is just doing its proliferating thing and I have to go along with it, resting as necessary. Very frustrating for an otherwise active person but I’m learning to heed the backaches and sluggishness and resume what I was doing once my energy has improved.
Perhaps try to take it easy before Spain and then have some restful backup plans at the ready should your energy not quite match what you want to do on holiday! Like my recent break, my mind wanted to canoe long stretches of river but my body preferred paddling instead!
Hi, @Duncan! Thank you for your kind and thoughtful reply. I am really struggling with the fatigue at the moment. I am trying to be sensible and not take on too much, but there are things that I have to do and the whole situation with the house and not being to sell it because of the flooding earlier this year has been very stressful, which hasn’t helped. I really thought that I would have been back living in Europe permanently last year, not still stuck here breathing in mould spores and not living the life I had planned for my retirement years. But such is life…
Your suggestion about SAD is something I hadn’t thought about, but it is definitely a possibility. I have a few friends who have it and the weather here has been awful for far too long now. The worst long rainy season in living memory (outside my house it looked like Venice and a couple of times we were trapped here and you needed a boat to reach the house) and even worse, it was floodwater mixed with raw sewage, as the estate’s septic tanks just overflow every time there is heavy rain. Then that was followed by cold weather, but the rain didn’t stop completely and it won’t be long before it’s time for the short rainy season to start, so the house is still damp inside and out. Some days we see the sun, but most days it’s very ‘brown’ and dull outside and the air feels very heavy, which doesn’t make anyone feel good. I know the particularly heavy days make my chronic migraine worse, but I hadn’t really made a link with the fatigue. It’s still relatively early days for me to be joining the dots on everything, but there may well be a link there. Once the short rainy season is over and we get into summer in December, this is a lovely place to be - warm sunshine every day for several months, but no humidity because of the altitude (just over 1,600 metres).
I am really looking forward to Spain and the wedding, but I know I need to pace myself. I am so excited to be a bridesmaid for the first time ever (at the ripe old age of 63!) and have been taking my responsibilities very seriously! (If you know anyone who needs personalised temporary tattoos of the bride and groom with a ring of hearts above them and a ‘Just married’ bow beneath them or a trilingual wedding ceremony text, point them my way!) Post-wedding it will just be great to spend time with all my old friends, although for now I have only told two of them about the Polycythaemia vera (PV) diagnosis, so there will be more sharing of that to be done. I know I won’t want to come back once I’m there and I have bought a flexible ticket, so I can see even from this distance that I’m almost certainly going to extend my time there - one of the joys of not having to rush back for work anymore!
Hi @JanetF just a thought that my fatigue can be brought on by what personally stresses me (I don’t deal with my stress well since my diagnosis), emotional, psychological, medical, physical and practical aspects.
The fatigue can come on immediately or up to 48 hrs later with me.
However we are all different.
Don’r forget how much you have on your plate.
Be very kind to yourself
Oh @JanetF, you’re most welcome. You’re so on top of it all that I have no doubt you’ll figure out a way to enjoy yourself freely whilst managing the fatigue. Rest and resume is my motto when fatigue is too much.
I can tell how excited you are for your bridesmaid duties and find that super cute, age be damned! We’re as young as we feel, after all! So exciting to be heading to a sunnier place and I love that you can extend your stay—I’d be tempted to as well! Oh my, all that tapas and vitamin D!!!
Keeping my fingers crossed that your energy improves so you can do as much as you like on holiday. Maybe add some siestas into your holiday schedule!
Hi, @Erica! Thank you for your reply. In fact, I have been under a lot more stress than usual in general over the last several months because of being flooded out, not knowing when I would be able to sell the house and leave Kenya, having the Polycythaemia vera (PV) diagnosis to add to all my other health problems and so on. Then at the beginning of last week I did far too much while trying to help a friend sort some things out - just sitting at the computer doing it, but for far too long at a time because it needed doing quickly, was really important for her and she did not have anyone else who could help. I did that for a few days and after that could hardly force myself off the bed for the next few days. I am very lucky in that I have a wonderful housekeeper to look after me (which sounds terribly posh, but is completely normal here and in fact she has a housekeeper as well, as I don’t want her to spend her time off working at home rather than relaxing with her family!) and that makes everything so much easier for me.
I’m feeling as if I have got over that now, but my body was most definitely not happy doing it. I have never been someone who has much physical energy, and have never been very physically active, other than my stretching regime, which I stick to religiously, but I have always had huge reserves of the sort of energy you need to sit working at the computer for as long as is necessary - 30 hours, 36 hours, whatever is needed to get a job done - but those days clearly have to be behind me now and after many years in a really stressful job and working in some very stressful places and situations, I need to try to keep my stress levels under better control.
Oh, thanks, @Duncan! You are right, I am ridiculously excited about being my friend’s bridesmaid! For years I have said why would you have cute little bridesmaids who are going to get confused going up the aisle and take all the attention away from the bride by being so small and sweet when you could have a hulking great bridesmaid who will make you look so much slimmer just by standing next to you? And finally, after all these years, someone has seen the sense of my argument! We have been friends since we both moved to Spain in 2001 and back then I weighed almost 7 stone more than I do now, so the argument was stronger back then, but it still stands!
It isn’t a church wedding and the couple have been together 32 years, so it’s been a slow journey to the town hall, but I have got them there with my bridesmaid pestering! OK, so there is a chance that that may not be the only reason they have decided to tie the knot, but still… And yes, age be damned! Although I often feel much older than I am, most people think that I am about 20 years younger than I actually am and no one ever believes that I am 63. I always used to say that it was the fat filling out the wrinkles, but after losing a lot of weight it turns out that there aren’t any wrinkles in my face, and my hair is still its original colour. No idea why! Every time I fill in a form someone comes back to query my age or date of birth. It’s odd, given that as a child and in my teens I looked quite old for my age and I can remember on trips up to London my mother fighting off men (with her handbag!) who expressed an interest, shall we say, when I was barely into my teens. But definitely better to look older when you’re young and younger when you’re old!
Anyway, if it’s OK with you, I am going to adopt your motto of ‘rest and resume’ and make it my own!
I love this so much @JanetF, your bridesmaid and holiday excitement is catching (in a good way) and now I wish I could go too! I’m not even a wedding kind of person but I bet it’ll be joyous and loving, just what you need from your family of friends. Bet you all can’t wait to convene and catch up.
As a fellow not-wraith I tend to think of my fat reserves as a benefit these days, despite what society likes to tell us! My bonus fat fuels my beloved hiking, keeps me going when my energy is low, and I too think it hides how craggy my wrinkles would be otherwise! My other half and I joke about how our bearish physiques also offer us natural hunting and gathering benefits as we sense when to fill up on fortuitous food finds, and can keep on going for longer! Oh and hibernating well. That’s what I like to tell myself at least, from a purely anthropological perspective of course
Please feel free to use that saying, it’s so perfect. I even remember who I learnt it from last year, dear @GrandmaJo who I trust doesn’t mind me sharing it (hope you’re well, Jo).
Here’s to community support, far and wide, all thanks to this amazing forum!
I am just over 80,was very fit and have been diagnosed with Myelodysplastic syndrome (MDS),get very tired. Am apparently too old for a stem cell transplant and have just had my first bout of Actisene,very painful towards the end,terrible constipation and utter exhaustion.
Have agreed to try one more lot of chemo but wonder if worth the candle.
Anyone know what the end is like without chemo.
Oh @01286p you are in the right place, you are now part of our forum family.
I wonder if you discussed the symptoms you had with your medical team as they might be able to help.
They are also the people to talk to about life with or without any more treatment.
I hope someone on here will be able to share their experiences.
They might be a another form of treatment or a clinical trial available to discuss with your medical team and the Blood Cancer UK nurses @BloodCancerUK_Nurses
Whether or not to have further treatment is ultimately a very personal choice and has been considered on here before.
The Blood Cancer UK support line is also there for you on 0808 2080 888 and also is Macmillan Cancer Care.
I would find your dilemma so, so difficult.
We are here to support you whatever you choose.
Really look after yourself and please do keep posting how you are getting on
So sorry to hear that you are having a tough time with your treatment. It is not unusual to feel exhausted. Is it Azacitidine injections that you are having? They become painful towards the end of 7 days. Can I ask whether you have be recommended anything to help with your side effects? It is very important to let your Clinical Nurse Specialist and your Doctors know about the fatigue, constipation and painful injection sites as they will be able to support you.
Azacitidine is a treatment that does take more than one course to start having an effect on the blood counts, so you may see improvement after course 2 or 3. Your Haematology team should be able to support you with your side effects by prescribing you medicines for your constipation and reviewing your blood counts in order to improve your fatigue.
I think talking this through would be really beneficial. If you would like to talk to me and the other nurses on the team we would be very happy to support you. Click here for more details of how to get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
Take good care
Gemma
Re fatigue, I saw my cardiologist yesterday, as I am going to change statin (the one I have been on since Moses was a lad isn’t available in Spain), so I am changing over in advance of my move there. She took one look at my iron and ferritin test results, was amazed that I was still upright, called my haematologist and said that she wanted to give me IV iron there and then, which my haematologist said she shouldn’t do, but she did agree that I could have (almost like a treat!) five days of iron supplement.
I’m not sure that she would have agreed to that when I asked her (as I was going to) at my appointment this coming Friday, so it definitely felt like a result and I am hoping that it will make a difference to my energy levels.
So @JanetF isn’t it lovely to feel you have a result.
Five days of iron supplement is a result, please do let us know how you get on and how you feel.
Have you got a date for moving to Spain yet?
Hi, @Erica! Yes, it’s lovely to feel that I have a result! I’m hoping that the five days of supplementation will make a difference, as I’m still really struggling with the fatigue and there is so much to do all the time. I am travelling to Spain on Sunday night ready for the wedding on the 5th, but I’m not much closer to moving there permanently, as my house here is still in the process of drying out very, very slowly. The short rainy season will start soon and, being realistic, we will have to wait for that to be over (hopefully with no flooding this time) for the house to dry out completely so that I can get the downstairs decorated yet again, sell it and make it to Spain for good. The deadline for the UN to send my shipment (and me, but separately!) there is April 18th, which is two years from my retirement date, so whatever happens, it all has to be done by then! When I lived there before it was all so simple, but now post-Brexit I have to have a visa to live there all year round and that’s more complicated, but it will all work out eventually, and in the meantime I’m treating the month I’ll be there now as a holiday around the wedding and a chance to be with all my friends and live the life for a little while that I’ll eventually be living all the time!
And finally, after all these years, someone has seen the sense of my argument! We have been friends since we both moved to Spain in 2001 and back then I weighed almost 7 stone more than I do now, so the argument was stronger back then, but it still stands!
And yes, age be damned! Although I often feel much older than I am, most people think that I am about 20 years younger than I actually am and no one ever believes that I am 63. I always used to say that it was the fat filling out the wrinkles, but after losing a lot of weight it turns out that there aren’t any wrinkles in my face, and my hair is still its original colour. No idea why! Every time I fill in a form someone comes back to query my age or date of birth. It’s odd, given that as a child and in my teens I looked quite old for my age and I can remember on trips up to London my mother fighting off men (with her handbag!) who expressed an interest, shall we say, when I was barely into my teens. But definitely better to look older when you’re young and younger when you’re old!
