Chemo and tiredness

Hi Julie,

it varies from person to person, so that’s really hard to tell. All I can say is that daughter found the first week tough but the second she felt absolutely fine. 

Hugs xxx

Hi Julie , as moomy says every journey is completely different.

I had NHL and a rather different main chemo so I had 6 cycles and each one had me in hospital for 5 days/nights on my two chemo pumps for 120+ hours at a time.

I asked my first nurse for any advice and she said “The Fatigue can build up over the cycles so sleep when your body says sleep but where you can, keep some activity going, walk short circular routes regularly as this will help over come a lot of the long lasting effects of fatigue”

So I would walk my two chemo pumps round the ward corridors after every meal and my phone said I was averaging 1-2 miles a day, I kept this going at home and did not have any debilitating fatigue.

My following treatments was rather different so spent a lot of time in bed and this resulted in a lot of muscle wastage so post treatment recovery took much much longer.

Hi moomy

thank you so much, the unknown is so scary. My daughter is having slight back ache pain today with a slight swelling in lower back! My poor wee girl...

thank you

Hi Julie,

it’s so awful when it’s your child, isn’t it? You just want to take it away from them, but you’re so frustrated and hurting inside because you can’t. I remember that feeling so well over many years. But HL does have a pretty good recovery rate, you might even hear some people say it’s a ‘good’ cancer to have if you have to have a cancer. But it’s not, is it, as we just don’t want our kids to end up with any cancer!

Sendinv you a big, understanding hug xxx

Hi  mike 

thank you for sharing that information with me, it really helps to understand things better. I will take all this on board and suggest this to my daughter when she starts her chemo. I hope things are on the mend for you 

god bless 

thank you Julie 

Hi moomy

I hope you are ok,thank you for your kindness and support.Can I just ask you  Did your daughter suffer terrible itching on her body? 

julie

Julie, against the odds I am doing great.

Diagnosed in 1999 with CTCL that was Incurable but treatable but would never see any remission.... to be told in Sep 2016 I was in remission for the first time in over 17 years and doing great - there is always hope and keep that at the back of all your thoughts ((hugs))

That’s amazing, the human body never seizes to amaze! Your an inspiration. Your right there is always hope

Hi Julie,

no she didn’t get the Hodge itch at the start, but had lost weight, was always tired and hated mornings! But we put that down to being a musician, and keeping late hours all the time; she was always busy! It was the lumps which gave it away, plus a really big mediastinal one which as a brass musician she had simply never noticed! 

it’s quite hard thinking back to 2004 which was when she was diagnosed, she got a remission which led to her second SCT, a donor one, in 2011, so she went through the mill, and still self medicates to try to boost her immune system which seems to have disappeared with all the treatment. But otherwise she is fine and still in remission. 

Hugs xxx

Ps, we are going to meet (social distance) tomorrow, she’s been shielding since mid March so it will be so great to see her at last! 

Hugs xxx