Fatigue

Hi again Inspired lad of Pelham .

As you know I have a different blood cancer and also different treatment journey.

I remember my first cycles of chemo ever so well…. I was in hospital fir 5 nights/ 6 days fir my 6 cycles and was connected to my 2 IV pumps 24/7 fir over 120hrs..

I asked my CNS (Cancer Nurse Specialist) her top tips fir getting through this and out the other end.

1) Eat regularly……. the body needs fuel and this can only come from a good balanced diet…… the body will use up the body’s fuel store much quicker juse living with cancer but also during treatment.

2) Keep some type of simple but regular activity going - as much as the mind and indeed the body says it can’t do things it’s important to try and push through as the less you do the longer your recovery will be.

From day one she came to me after breakfast and walked with me and my chemo trolley as we did 10 rounds of the small rectangular corridor in the ward….. I was fine abd had a good snooze but she told me to set an alarm on my phone so zi would not sleep longer than say 60mins then I had to get up and sit, read, watch the TV.

She came back after lunch and we did the same….. following dinner she was pleased to see that zi had got up and walked without her.

Treatment will develop fatigue…… but fatigue can develop due to not doing stuff.

The other problem with not keeping some activity going is your bodies muscle mass is going to erode…… abd this can take a lot of time and effort to re-build.

We have these sings everywhere in our Heamatology unit

…… and it is very true.

During my second Stem Cell Transplant I was very ill (heart problems) so ended up in bed a lot……  I could do 10000 steps no problem before I went into the unit…. 4 weeks later I left in a wheelchair. I was turning 60 when I left but had the body of a 90 year old….. it took a good 2 years to fully recover.

You need to assess - is it your brain saying I just can’t do some simple activity?…… or is your body starting to forget how to do activity?

Hiya,  fatigue is kicking my butt these past couple of days. I seem to be more asleep than awake.  I am on the radar trial and the first round of chemo, so I guess it is just doing what it is meant to, wiping us out to try and fix us. I've been trying to do a few bits and pieces, and given I am a single mum, some things are unavoidable, but oh how my body keeps telling me to sleep!  I could easily sleep as I am typing this!

Hi , yes I am a little further into my treatment , also on radar trial.Finished chemo , now going through various tests to see if I can undergo stem cell treatment.I thought when I finished chemo I would feel better.Far from it , some days I can hardly move and so tired.They said it would be hard going and it is.Just got to get through it.I cant wait for spring,everything seems that little brighter.I hope you are having a good day.

We've got this! I hope once the stemcell transplant is done (fingers crossed) you can start getting a bit more energy back. The weather here doesn't inspire me to get from under a quilt cover, but at least I made my breakfast and  popped on the washing machine :) 

Hi , thanks for replying .I force myself to get up and about every morning , although sometimes it is nearer lunch time! It all came from a bolt out of the blue.I broke back in Feb , not getting any better , had a blood test in Sept  which showed myeloma , devastated and literally life changing.I am still coming to terms with it all .

Like peas in a pod! I broke my L4 in November and it was because of that they discovered the myeloma.  I hope they have you on some strong pain relief because it is terribly debilitating.  When I am asked how I am doing, my first reaction is to want to say I'm terrified, but I always say something else to make it look like I am braver than I am. We're all in it together, we just need to get used to this new, crappy, normal :/

Hi , I have been to GP's this morning to up my pain killers.Oxylan and Oxynorm , I am hoping that will help me cope better.I have also been referred for nerve conduction test because of the numbness in my fingers.I know what you mean about being terrified , now and then a feeling of dread overwhelmes me , which I cant predict when or why.It passes and I carry on , we have no choice but to fight it.I used to go fishing but gave up because life was too busy.I have recently spent a fortune on new kit.The thought of getting out to the countryside keeps me going.I just hope I can manage.Are you going to have stemcell treatment and have you had bone marrow taken?

I dont know why , but my name has gone to tinca , I did try to join twice and that maybe why.

Hi , I dont know how its happened but I have a name of betterdays and also tinca.I tried to join on two occasions and that maybe why.Confusing.

I went to GPs this morning to up my tabs , oxylan and oxynorm , I hope that helps me.I know what you mean about feeling terrified .I sometimes have a feeling of dread that overwhelmes me , I cant predict when or why but it passes and I carry on . We have to fight it.I used to go fishing but gave up because life was to busy.I have spent a fortune on new kit and I cant wait to get into the countryside . I just hope I can manage it .I have numbness in my fingers .I have to go for nerve conduction test.Have you got to have stemcell treatment and have you had bone marrow taken?I hope I havnt sent this message twice!

It's alright, seems like the forums are a bit glitchy!  Fishing sounds the perfect way to relax, though I know nothing about it. I went once and felt sorry for the fish and never went again :D  I know about the numbness though, I have decreased sensation in several areas and it is so weird. As for stemcell, yeah, I am scheduled for it and I have had two bone marrow biopsies so far. Not the most fun of things but at least I know what to expect now. I try to push the diagnosis to the back of my mind but it has become ever present, just the tingling and numbness is enough to remind you, not to mention the masses of tablets :/  I like painting, I think I'll channel what I am feeling in art.