What does fatigue feel like?

[ScardyCat40]

Just had my first round of chemo and I was wondering about fatigues. Is it like a sleepy feeling or is it more like the achy feeling you have if you have the flu. The one that leaves you tired, breathless and a bit clammy if you try to do anything?

[AngelaAbell]

Hi Pam

I suspect that everyone reacts differently but in my experience (of 3 lots of chemo over the years) It leaves me feeling exhausted and extremely vague - as if drugged. It lasts just under a week when I want to sleep the majority of the time and when I am awake I have no concentration - can't read, focus on TV/films etc. I only feel clammy at night. I can generally do one or two tasks each day but that's it. After my last treatment I had a very good day immediately afterwards - high on steroids - then slept 18 hours out of 24 for 3 days then began to come round. By the next week I am more or less back to normal.

Hope that helps

Angela

[ScardyCat40 in reply to AngelaAbell]

Thanks but who is Pam? I have got a water infection and spent Friday in hospital but my blood count is normal I'm also only 6 weeks post op and was looking forward to doing a bit more before my next round. I've also been told I have to attend a work focus interview at my local job centre. I was hoping they would put me in the support group whilst I was undergoing treatment

[Hidden in reply to ScardyCat40]

" I have to attend a work focus interview at my local job centre."

I am incredulous! There is no way that, whilst recovering from surgery and undergoing chemo- or for a couple of months afterwards you should be considered fit for work. Your GP will be able to write you a medical cert. If you were in a job and your employer insisted on you going to work during this treatment you would have an automatic case against them for discrimination.

I'm sure your extreme tiredness is to be expected after the months of worry you had, followed by the treatments - exploratory and surgery, then the chemo too. It took me 2 years post surgery to feel normal-ish.

Be kind to yourself!

Very best wishes,

Isadora.

[AngelaAbell]

Sorry - I just had Pam on my mind.

If you are only 6 weeks post op I would think that you still get tired from that. Takes quite a time to get back to normal even without treatment. I found that you just have to go with how your body feels while it recovers strength and try not to get too frustrated - easier said than done. Can you talk to the job centre about postponing the interview until you have fully recovered from the op? Also - do explain to them that you won't be able to focus or concentrate very much for 6-10 day after treatment.

Good Luck

Angela

[ScardyCat40 in reply to AngelaAbell]

I'm working with Macmiilan on an appeal but I doubt it will be decided in time for the interview and if I don't have a good reason for not attending then I will have my benefits reduced. I'm kind of hoping I do have a bad day at the interview as everyone always tells me how good I look. This always irritates me especially when I'm feeling yucky inside

[Suzy]

I would have said your 2nd description of fatigue is very accurate

[bosue]

Hi ScardyCat40 you started you chemo a few days before me, and like you didn't know what fatigue felt like, I've had the odd shakes, like from inside very weird and a bit spaced out, I pop to bed for a short while but feel much better today (6th day if chemo is 1st) like you everyone reckons I look great I feel like shouting sometimes, I think you always smile with visitors and when they go that's it exhausted, just heard on news Macmillian says exercise is good, well at the moment I don't think I could, do they mean after chemo, although I'm still getting over op !! ?

[ScardyCat40 in reply to bosue]

I think gentle exercise can help with the fatigue but obviously not on the bad days. I normally run but because of surgery the earliest I can return to running will be October. I'm going a bit stir crazy.

A few days after chemo I had a really bad day I felt restless, agitated and just could not get comfortable so I rang the hotline and they thought it was the steroids

[bosue in reply to ScardyCat40]

ditto with agitation, didn't know what to do with myself , this weekend was the worst really spaced out and shaky, but feel really great today (Monday) done all the housework, washing etc. and made a meat pie (I don't do that normally) ! wonder what Wednesday will bring (1 week)

[Eleni]

Hi Scardycat

Chemotherapy does cause 'restless legs' so that will be the agitation you describe. I find it's worse at night. My GP prescribed anti histimine - Piriton, for it and they also make me drowsy so i sleep........blissful!

I do always try to walk a little each day, even down the garden path.

Fatigue is probably the worst thing and I find the 'chemo slush brain' so debilitating.......can't concentrate on anything, but it does pass.

I too may have to attend a work assessment interview; the CAB man who helped me with the forms advised me NOT to prepare for the interview at all; be as bad as you can be and that they will be assessing me from the car park - so the worse you are, the better! Your GP and support nurses will help you with evidential documentation though. You can't possibly be even thinking about work at the moment.

Try not to worry and i hope you feel a bit stronger soon.

[ScardyCat40 in reply to Eleni]

I've been already placed in the work activity group although I had been advised by several people at MacMillan that I would be put in the support group so we have sent in an appeal today. In the support group you get a bit more money and you don't have to attend work focused interviews.

I think I would find it hard to fake a bad day If I wasn't having one

[Eleni]

I totally agree. I thought it sounded bizarre to be advised this way...but it is disappointing that the system doesn't always seem to help us as it should. (could get on a right soap box now!

I'm very glad that Macmillan are helping you appeal. Good luck with that 'cos of course, you should be in the support group..

Best wishes

Eleni x

[ScardyCat40]

Good news everyone just had a call from my local jobcentre and my interviews has been cancelled. Sounds like my appeal has been successful and I've been moved to the support group.

[bosue in reply to ScardyCat40]

scardycat40. so I should think, shame on them love Bosue