Treatment starting… food advice please

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Hello all.

Mum starts 6 weeks of radiotherapy and 6 sessions of chemo on Wednesday for cancer at the back of her tongue that’s gone to her lymph nodes (exactly 8 weeks after diagnosis, which we are thankful it’s been relatively quick!) 

I need some advice please what foods we can get in for mum that will be easy for her to handle in the first couple of weeks?
how long can we expect it to be before she really struggles with any food? 
until then (in the first couple of weeks) what foods are best to have in the fridge? Drinks too?

My poor dad is really worried he won’t have anything in the fridge that she can tolerate so I said I would ask on here what’s best and go do a food shop with him. 

Also when she has to fully rely on her rig, what do we put into it?  Is it just drinks? Or liquid food too? 

Does it become very depressing to not be able to eat? Or does appetite completely go so you don’t mind as much?

Any advice is greatly appreciated as always, 

Amy 

  • Hi Amy. I managed proper food till it all crashed down then had Fortisips and meds down the tube. 
    I wasn’t depressed about not eating at all, even though I still had an appetite. I knew I was getting fixed. The really important thing for me was that my husband didn’t fuss over me and gave me space when I needed it. 
    I did have the odd meltdown in the night but pulled myself together after a good cry. 
    I did lose appetite after treatment but again just got in with it. 
    Sorry that’s not much help. 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi there

    I had surgery rather than radio/chemo, so appreciate my situation was different, but found buying a blender was invaluable!

    I had never used one before but really relied on it. I made smoothies to keep my fruit levels up, and whizzed up porridge (oats with banana, milk and chocolate powder worked nicely!). I even blended things like chilli and curry with rice.

    It meant I could have normal tastes, just in different textures.

  • Hello Amy, your Mum will probably be OK with normal food for a week or two, then bland creamy food is best. I got on well with porridge, scrambled eggs and creamy soups, nothing spicy or acidic (eg tomato) or dry. Your Mum's hospital team dietitian should advise, and explain about using the rig. We were told to put cream in everything!

    Everyone responds differently but it does get painful to swallow, you do lose your appetite and eating becomes a chore - you just have to do it to keep up the calories. My partner had to nag me to drink Fortisips, until we switched to NG tube feeding which made life so much easier. 

    It sounds as though your Mum has great support from you and your Dad, which will really help. 

    Wishing you all well,

    Catriona 

    September 2022 aged 63 diagnosed with HPV associated SCC base of tongue T4 N2 M0. Chemo & radiotherapy for 6 weeks ending Nov 2022.  Dec 2023 one year all clear. See my profile for longer story

  • Hi Amy, some good advice here to start with... don't go crazy stocking up on things as taste and appetite can change overnight.. usually a weekend... keep an eye on hydration levels, as dehydration can quickly become a problem.. maybe around the 4th week things may start to get a bit tougher so, if/when she has to rely on the RIG, look at getting a pump so she can feed overnight.. it will make things so much easier.. all the best. 

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive.. 

  • Hi the feed for the tube will be supplied by hospital see dietician. I was eating normally for 2 weeks 3rd week it started to get difficult I had ensure supplied to supplement poached eggs I could manage. Then it became impossible to swallow overnight almost. Don’t waste time on getting big shops jn food will be wasted more than likely. I was ng tube fed for 6 weeks then started drinking ensures and tiny bits of soft food. Hydration is also vital I coukdnt stand our tap water it’s a hard water area. 
    tske one day at a time snd tell her team any issues from the start. Best wishes blig below might help all of you lots of links in ut 

    hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi

    All the advice already given - v sound. I had the same treatment as your mum - same cancer. I’m 8 months out of treatment and very good now - so there is light at the end of the tunnel. 
    After 3 weeks I couldn’t swallow so I used the PEG for water and food. I couldn’t have fortisips as they were too rich for my stomach. The dietitian gave me some light food in bottles that I put into the PEG with a pump - it dripped the food through slowly, so I could cope with it, before that I was very sick. 
    I didn’t feel hungry at all so I didn’t miss food. It’s been a gradual thing building up my eating again now that I can swallow. As taste isn’t the same and I don’t eat as much as I used to. But everyone is different so there will be some trial and error. 
    Your mum will probably be fed up and I’d like me snappy at times but give her some space, she ll need lots of rest. 
    I admire you taking advice for your mum - she’s lucky to have you 

    Rachel xx

  • Hydration is also vital I coukdnt stand our tap water it’s a hard water area

    yeah, same here... tasted horrible, and can't stand it even now.. 

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive.. 

  • Hi Loz took me 3.5 years to  drink our tap  water and that was filtered. We bought bottled water for me to drink. Now at  almost 6 years I can drink our tap water. Never give up it hopefully it  will return. 

    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Loz

    Isn't it interesting that water is supposed to be tasteless and odourless at least in the best case scenario. It definitely isn't that to me either and it is now 5 years since my last radiotherapy. It tastes a bit salty still and of something else that I can't identify maybe a bit bitter.  My taste buds were really fried as I had 2 lots of radiotherapy at different times one lot in 2013 to one side of my face and then another lot in 2019 to the other side of my face. However water is still the fluid that I find I can tolerate the best as other fluids just don't taste right to the extent of being downright awful. At least I am well hydrated.

    Lyn

    Sophie66

  • yes, I find it very bitter.. 

    Loz (61)

    Oropharyngeal right tongue base T2N2bM0 squamous cell carcinoma p16 positive..