Chronic fatigue

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Hi everyone 

I posted this in another forum But got no response so thought it was prob more relevant in here. I've have my second round of IV Capox last Thursday and a week on I'm still hardly able to do anything in the day as I'm so tired all the time. I've been listening to my body and resting up but wondered if this gets any better before I have the next round? I'm taking capecitabine tablets for two of the three weeks in between IV sessions for bowel cancer. Thanks Claire 

  • Hi Claire  and I am sorry to read about the challenges you are facing.

    I have a completely different type of cancer. First diagnosed way back in 1999 with a rare type of incurable Lymphoma.... having had years of some very demanding treatments (you can see my story in my profile).

    Fatigue is one of many challenging parts of the journey. I have had to deal with this on and off over my years but mainly between late 2013 to late 2016.

    The mind says I am tired, listen to my body, put your feet up...... and this is true....... but on the other hand the less you do the longer the fatigue will last and your resulting recovery can take longer.

    I am up in the Highlands and our main hospital in Inverness but also the Cancer Unit I was treated in down in Glasgow have these signs everywhere on the walls.

    When I was having my first chemo in late 2013. I was in hospital for 5 nights/6 days on my 2 IV chemo pumps 24/7 for over 120hrs for each of my 6 cycles.

    I asked the nursing team for their top tips for getting through this. Number one was eat, you must eat as your body needs fuel, don't get sidetracked by not enjoying the food just eat.

    The second and as they said the most important thing was keep active. Active meaning doing some simple regular exercise to stop me losing my muscle mass and most importantly would overcome some of the fatigue

    So on that first morning the nurse made me get up, have a shower then we walked (with my chemo trolly) 10 circuits around the central storage section of the ward and I had to do this after each meal.

    This got me into the rhythm and I carried on from there both in the hospital but also at home.

    Yes I had a good nap after each circuit but again I was told set an alarm for about 45 mins to ensure the napps during the day did not interrupt my nights sleep.

    My wife did not come a serve me a cup of tea..... I had to get it myself..... its the small and often things that make the difference in the long run.

    If you read my profile you will see I ended up in the critical care unit and this knocked me off my feet for a good few weeks. This is where the sign above was so true. I was turning 60 when I left the hospital in Glasgow but had the physical body of a 90 year old, I could not walk....... the journey to recover was very very long but I am turning 68 next month and I am doing great.

    There is a balance to not doing anything and overdoing stuff. Yes listen to your body but it's important to remember the simple default is to do nothing....... and this is so counterproductive ((hugs))

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • Thanks for replying Mike

    That's really helpful advice. I haven't been eating that well I know as I'm living separated from my husband in the same house and if I don't have the energy to cook he doesn't do it for me. I made a conscious effort to make sure I eat more often as I don't fancy food but hopefully this will help. I will also try upping my activity and hopefully this will improve as yours did. It makes sense what you say! 

  • If you run a car and not service it let alone put fuel in it it will come to a standstill…… this is the same with our bodies Wink

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge