Hello everyone not been on here for a while but since diagnosed last year my chemo treatment stopped working and they have changed it to folfox now. A lot stronger and side effects of nausea are horndous, can’t eat anything and can’t sleep enough as I’m exhausted. Struggling though this immensely it’s so hard . On Pallative chemo so it’s a long tough road and feel so sorry for my husband and tee kids, they are 19, 16 and 14, so they understand what is happening and we discuss everything but they simply do not deserve all this heartache. Please help
Hi Ola and I’m sorry to hear that you’re having such a hard time. Please talk to your chemo team. There won’t be a lot they can do about the fatigue but there are quite a few different antisickness meds that you can try which might help with your energy levels if you can start eating again? I think I was given metaclopromide but a lot of people who’ve struggled have found Emend to be a game changer.
It is a long tough road and it affects the whole family but please don’t feel guilty. I used to feel bad that my husband was having to do all the day to day stuff as well as working but he said he was happy to do it as he felt so helpless during my treatment.
Please give the support desk a ring and have a chat with them. There is free counselling sessions available through BUPA if that might help or maybe a local support group if you felt up to going?
Sending you a big virtual hug and take care
Karen x
#Hi Ola ,
I also have 3 kids aged 18, 15 and 11, and it is difficult. I was diagnosed 5 years ago and have been on and off chemo ever since (palliative). It affects the whole family and my eldest daughter has been struggling with her mental health for a few years (self-harming etc.) and has just started on anti-depressants. I've had FOLFOX and FOLFIRI, now on Avastin/Lonsurf. I did ask for Emend while on FOLFOX as it is a very efficient anti-nausea and it has anti-metastatic properties (I was initially treated whilst living in New Zealand and they were giving it systematically with FOLFOX there). I couldn't sleep while taking dexamethasone so I asked my onco for sleeping tablets (zopiclone), which really helped. I wouldn't worry too much about not eating while on chemo, it is not necessarily a bad thing (I always fast during chemo, helps reduce side effects and evidence suggest it might increase the effects of chemo). I did find some miso soup with a few veggies thrown in quite comforting though. For mouth ulcers, in case you get these, I found the best was a spoonful of coconut oil in the mouth for 5 min then spit it out (in the bin, it blocks drains) miraculous (did it twice a day); the mouth wash given by the nurses only numbed the ulcers for a minute but didn't heal or prevent them (plus it kills all the good bacteria, which are really needed).
Hope that helps,
Take care,
Cecile x
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