Some advice from fellow travellers please!

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Hi everyone!

I had a right hemicolectomy in October last year and now I'm in the middle of 12 cycles of FOLFOX. It's hard going, symptoms get a bit more intensive and take longer to recover from each time.

I would like to ask two questions please......

Eating has lost all it's pleasure. Everything takes disgusting, especially dairy which I'm cutting out altogether now, after eating I feel no or get stomach cramps and later on sometimes constipation, occasionally diarrhea. I think I eat healthy, wholemeal and fibre, fresh fruit and vegetables. Has anyone got any suggestions or things that have helped them? (I'm pescatarian)

I've suffered with mild peripheral neuropathy from the beginning, in my hands. It lasts longer these days and more things can set it off. This week I noticed my left foot and ankle are swollen. Something that used to happen to both feet after long haul flights but this is just the left? My left hand may also be a bit swollen. Is this P.N. too or oedema for moving less?

Thank you so much.

  • Hi  

    I am thinking you should possibly run any swelling past your team . They like to know about the more unusual aspects . They will be able to give you their expertise. Our helpline staff could also offer some input on 0808 808 0000 or your GP .

    My mum described it as eating cardboard. She lost a lot of weight but please also speak to your team about this as a small reduction for my mum actually really helped her . She also got input from a dietitian.

    Definitely don’t shoulder this alone , your nurse is there to answer and provide specialist specific input. 
    Take care ,

    Court 

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    Helpline Number 0808 808 0000

  • Thank you Court.

    I appreciate your advice and will check in with my team.

  • Somebody once suggested taking a mouthful of soda water and holding it for a couple of minutes before spitting it out. I tried it and it seemed to improve things, albeit temporarily. All back to normal now. 

    Dulac 

  • Hi  

    I was recently recommended B12 at the hospital, as it's meant to help mitigate neuropathy. You can find B12 boosts in many dairy alternatives such as oat or almond milk.

    Separately I was recommended to add sharp contrasts to eat meal serving to help awaken organs to function better. It sounded curious to me but I can confirm that adding a splash of wholegrain mustard, lemon juice, vinegar, horseradish, anchoivies, etc even when not normally suited to the meal has helped me on abdominal pain and toilleting.

    Could these be worth trying for you?

  • Thank you for this suggestion Dulac. I'll give that a go. xx

  • Thank you crumpets or toast. I do prefer oat milk and love loads of vinegar on my chips so that's no hardship! I have been craving more lemon/citrus flavour items so I will definitely integrate your suggestions with future meals. 

  • I had 4x folfox, then a break for surgery, now I've had 3x folfoxiri- so I guess about the same as you- I must say the taste thing has come on more the last couple- it's not as bad as that but I very much really don't fancy some things some days, and really not some things- spicy stuff seems to be more of an issue but I also find lemon and those type tastes good- I tend to go with what I do fancy and be aware of anything spicy maybe being funny. Sometimes it has meant eating weird things but I figure the main thing is getting food in even if dinner is a a pack of grapes, a cup of tea and a marmite bagel! we'll get there! 

  • Thanks KimLondon,

    I agree - lemon good, spicy bad!! I didn't like marmite before but I'll have smoked salmon if you are offering Beigels!!!

    Good luck to you with your own going treatment.