Finding chemo very challenging (to put it politely!)

Hi   

Welcome to the site . We know you'd rather not be a member of the club but it is the best one to find out what you need to know and get support . 

My story is on my profile just click on my name if you want to read .

I am posting a link to hints and tips for chemo you might find helpful

https://community.macmillan.org.uk/blogs/b/weblog18/posts/chemo-aids-shopping-list-gathered-from-breast-group-memebrs 

I hate to say this but most of what you have experienced is " normal " for chemo 

If you keep a diary of symptoms day 1 treatment  > day 21 day before next treatment you can see and plan for your good days . 

I always made sure I had good meal evening before chemo and decent breakfast that morning . Fridge at home had small boxes with treats in ie small pieces of fruit cocktail sausages and anything else I thought I might pick on . Also pots of custard ,rice,mousse yoghurtand jelly ,also some sliced ham etc.  On chemo days I would take pieces of fruit ...frozen grapes are great to suck it helps hydrate the dry mouth . 

Your taste buds will change that much you may find you now like things you previously hated lol I was that sensitive to taste I could tell when I crossed from our water authority to the next one . Couldn't drink tea at all . Just had to experiment until I found something .

I made lots of soup using stock cubes & couple litre of water adding leek/ potato or butternut squash etc then blending that way I was eating my fluid for lunch or whenever 

Have  a look at chemo thread under diagnosis and treatment you'll find some kindred spirits there for advice and a chat . 

Nobody minds if you read people's profiles it can help a lot seeing everyone's stories . Awake thread under chat is a very lively thread .

have a look around and join in 

Hi 

Oh I feel for you as I’m having a tough time too on similar chemo.

A friend of mine who has gone through all this twice, (I know), suggested a water filter jug. It has made a huge difference as tap water now tastes disgusting, and as we all know, drinking water is so good for us during chemo. They’re not too expensive and it might be just what makes the difference. 

How about eating things with a strong flavour once the nausea has passed? I’m enjoying curries/Mexican flavours as long as they’re not too spicy. I also have to brush my teeth/tongue before I eat and that helps though I know it probably sounds ridiculous.

Have you asked the chemo team for laxatives? They’re very gentle but do the job. 

I wish I could be more helpful. It’s undoubtedly one of the hardest things I’ve put myself through, but trying to stay positive and I hope you can too

I have had 7 cycles of chemo, 3 weekly. Had my last one on 21st January and have suffered really badly each time with inflammation of the mouth, nostrils, etc. Tongue and taste has been awful with me going off different foods each time too, but especially salt, pepper, hot spices, gravy, tea, well all sorts of food etc.  This would start around day 5 after chemo and last aroun a week to 10 days.  My husband was always very disappointed when he cooked meals and tried so hard to give me something nice and then I couldn’t eat it.  One thing I learnt about just before my last cycle was dry mouth pastilles which seemed to help clear my tongue eg Salivix Plus and also a toothpaste called Biotene. Wish I knew about them sooner.  With my nostrils it was suggested to put Vaseline up there but I didn’t like that so I tried nipple cream as suggested by my breastfeeding daughter and it was so smooth and thinner and it made an amazing difference    To them when they were dried out and inflamed. Then on the week before my next chemo treatment I would eat all the things I usually enjoyed like spicy foods and curries!  Hope you find what works best for you. Good luck!

Oh and how could I forget pineapple juice! Usually can’t stand the stuff, but my chemo nurse suggested it and it really helped my mouth. Apparently something to do with enzymes.  My oncologist kept recommending manuka honey.  He said it is amazing and to coat my tongue with it. I can’t stand honey so didn’t try it so don’t know if that might help or not. 

Thank you for those tips Beyoncepower. I'm definitely going to try brushing my teeth before eating - great idea - since my mouth feels really manky and puts me off eating. I'll look into filter jugs as well. 

I'm feeling quite a bit better today (day 9) so might even manage to try a bit of (slightly) spicy food! As you say, I must speak to my team about laxatives and also perhaps a different anti nausea med.

I expect that by the end of my 6 cycles, I'll actually know what I'm doing......

Anyway, thanks, you have been very helpful and I will stay positive (most of the time). Best of luck with your treatment    

I love this site! So many helpful suggestions and fellow feeling. Your experience sounds so like mine Baileylady. I had to laugh at the nipple cream but does sound better than vaseline. Really looking forward to near normal eating in week 3, especially toast with marmalade - can't stomach the texture of it at the moment. Have tried to eat pineapple but found it required too much chewing (I know, picky or what?) so the juice sounds ideal. Cheers!

Aww hi there .  Thought I’d share some tips if it helps! try drinking cold milk / milkshakes or make fruit smoothies as after my 2 rounds of chemo (10 cycles) I remember I totally went off food and especially my usual Asian food and in particular spices! You reminded me of how hard it was to swallow simple food like even bread. After the 10th day it started to get better and I would start to eat and then it was the next round of chemo again . Some great tips mentioned below though about custard and jelly pots. I remember eating my sons baby food at one point
Try Fruit flavoured mouthwashes as they helped my mouth & throat sores. Tk xx

Hi, I too had an awful time with any food and drink. Only good thing was I lost weight, which I needed to do!!!....One thing my husband bought that he thought would help and I could get that down was frozen yoghurt..... I found also if I put a sandwich in the fridge and it was really cold I could just about manage it. ..Hot food or the smell of food cooking made me fell nauseous.....keep going it gets better and your taste buds will return.....all the very best to you......xxx