Fatigue

Can't tell you why but I believe it could be something to do with what you can eat or more to the point in my case the time it takes and the effort means I eat less, I can taste food and that makes it easier for me as I can't imagine how hard it must be if you are struggling and don't get any enjoyment out of eating. I think you might find things can improve but it is very very slow I am nearly 4 years in and find I get small improvements such as I can manage a small amount of cheese (not melted) i.e. it goes down. I have to sleep after an hour or two of working and have nowhere near the strength I had before. The other thing that could be adding to the problem is depression, I find when it's bad I have less energy, I don't know if you suffer but it could be worth thinking about.

I hope things improve on the taste side for you as I know it would make it worse for me, I can still remember the stuff they produced in hospital when I was first allowed to eat (I wish the memory would go).

Good luck

Hi Gordie,

I have been experiencing fatigue for six years since my treatment.  To start with I used to get hit by massive waves of tiredness, so quick in onset and irresistable that I would feel them coming and have to lie down, otherwise I would just pass out where I was - sitting, standing, whatever.  I would sleep for anything from three to eight hours during the day, and then sleep all night as well.

This took the best part of a year to begin to ease, and then another two years before I stopped needing to sleep every single afternoon.

I did everything I could to build my stamina back up, and probably the most effective thing was going to the gym.  I'm not talking about rippling muscles and sweaty bodies here - when I started, I could hardly do anything.  I was as weak as a kitten, and could barely lift the lightest of the weights or do anything on the machines.  I devised a strategy that worked for me, which was to exercise as gently as I possibly could.  I never came close to breaking a sweat, and if I came out of there tired then I had pushed it too far.

It took me several months of very gradually increasing what I could do, before I began to notice a difference for myself.  However, it did change things for me and it gave me more energy available during the day.  I made some spectacular mistakes, probably the most noticeable being thinking that I would be fine attending an aquafit class.  It was only an hour long, but I slept for two days straight afterwards.

I guess what I am saying is that in my experience, if you exercise you should do it so gently that you don't use up all your energy for the day.  If you push yourself, you should do so with the caution that you may be tipping your energy reserves for that day past the point where you can recover quickly.  Your body is using an incredible amount of energy every day just in countering the effects of the radiation.  All you can do to help it is to gently build up your resilience and stamina, to make sure that your muscles are more toned and your cardiovascular system is functioning efficiently.  When your muscles are working properly, they cost you less energy to do everyday things becaue they are supporting you, so it is worth the effort to get them 'on side'.

For me, my energy recovery hit a plateau about two years ago, and right now I am learning to manage with what I have rather than struggling to gain tiny amounts more.  I do understand the frustration, and there is not much you can do about that because always your mind and body are remembering how they used to be and being continually shocked when you can't reach those places any more.  It may be that your energy does return - for lots of people it does, and I hope that this is the case for you.  In the meantime, all you can do is accept what you have, and try out different things to inch back to more stamina and fitness, because these will make more energy available to you in other ways.

Best wishes,

Josie

Hi Gordie. Sorry you find yourself here and that you’re having such a problem with fatigue. I’m nearly 18 months post very similar treatment to you. I didn’t suffer with fatigue in a big way, but can I make a few suggestions? Sorry if you’ve covered all this already, but do speak to you GP as there are several possible causes of fatigue you should rule out - anaemia, depression, poor sleep and poor nutrition are just a few. If none of these are an issue then could you ask your hospital team to refer you for some help with your fatigue, particularly as it is affecting your return to work? I don’t know details, but there should be advice, support and possibly therapies available to help you to make to best possible recovery from fatigue - no magic solution though. Please ask your GP or Team for assistance.

It must be incredibly frustrating for you and I wish you the best of luck in finding some solution to your fatigue,

Hilary

Hi Hilary

thank you for your kind words of help, I have been through the doctor and seen my consultant and my recovery is as expected for the extent of chemo and radio therapy I have had. Their advice is listen to my body and don’t push it.

I have decided to take on a personal trainer who is very active with cancer patients and he is taking me through a fitness program to build up me muscle strength and stamina. I am now 8 weeks into a 16 week course. I have already noticed that while I still tire my recovery time has improved dramatically.

It will take a while and my advice to others is try and be active but still listen to your body, it’s the only one you have.