First welsh patient enrolled in TORPEdO

Cycling engineer said:

I was doing ok for 3 weeks but both chemo sessions made me feel sick for a week. My skin was in good order for about 26 proton beam sessions and then it started to break down. I kept applying the moisturising cream and my skin recovered about 2 1/2 Weeks post-treatment.

I think the acute side effects are the same with proton and photon. It’s the long term effects they are looking at. 
I watched the centre at UCLH go up on a time lapse they did. Amazing science and amazing architecture 

Hi...I too had 33 proton at Manchester and 2 cistplatin chemos. My treatment finished mid March 2021. My cancer was in the right tonsil, soft pallet and right lymph node. I'm glad to read your neck healed quickly, I still look like I've been shot at the side of my neck lol. 

The mouth is such a delicate area. Everyone seems to heal differently and each has their own journey and story to tell.

Were you HPV16 positive? I was and responded well to treatment but left with lot of side affects. Have you got an Ng tube? 

XXX 

Yes I am positive for HPV and yes the mouth is very sore and I just want to eat anything with flavour and not have a lot of pain from doing it. Luckily I do have a feeding tube but the Fortisip food is getting a bit boring now. 

I hope you heal fast. 

Ahh I so understand that feeling! My mouth is still very sensitive to flavours. I live in hope that one day I can enjoy a glass of red wine lol. 

Can you breathe through your nose? I have to mouth breathe which makes my dry mouth worse but I can't remember my nose being like this initially .

I would definitely say, don't compare your journey with anyone elses. Some people recover faster, by that I mean they are able to maybe eat mash faster... It took me a long time to be able to manage mash! Once you do start to try somethings e.g. soup you can take everything... My mouth can sniff pepper out a mile and I can't eat it lol 

Have you got different flavoured fortisips? They do come in vanilla, strawberry, mocha, chocolate, forest fruit, banana...I'm sure there's some more too so you don't have to stick to one flavour.

Keep up with the salt water rinses and be careful of oral thrush. Top tip, you don't have to have white patches or a white tongue to have oral thrush. I take long term fluconazole tablets for that and they help me eat.

Ways of getting calories... Cream of mushroom soup with a piece of bread and butter in cut up into tiny pieces with the crusts cut off. If you can manage spread cheese on it too great.

Double cream in semolina, tapioca and porridge were my go tos.

If you need anything or just want to offload message me anytime XXX 

Nearly50 said:

I would definitely say, don't compare your journey with anyone elses

Definitely but don't be afraid of challenging yourself. It's OK to fail.

Nearly50 and Cycling engineer do please keep us in the loop as you go forward.

I'd like to say that it does get better. It took me two and half years to enjoy a glass of red wine. Ale was much easier much earlier. I could mange a mild curry at a year. Improvements continue. I found trying things all the time even if it meant going backwards at times kept me sane. Step by step the months melt away and I'm now over three years clear.

Hi Lisa The company that’s allowing us to get xyimelts vat free I have a form you  can fill in send me a friend request and the I’ll send it as think we can’t advertise   it. Just be careful there’s a new flavour out slitly sweet xyimelts I didn’t realise I got them tried one last night I found them slightly unpleasant. 
As you say we are all different , I  just can’t tolerate any drink am ok with alcohol free lager wasn’t a drinker before treatment  but that’s just me. Like you I have oversensitive  smell and accentuated taste. Spicy food I fear is now a no no for me. But I can live with that just need to read packets, mustard is a bad trigger point for me , so many mayonnaise have it in. It drives my hubby mad will buy something then it’s a nope can’t eat it. But there’s lots I can eat .Just keep trying things we all get our new normal. 
hugs Hazel x

Hi Lisa we are friends so I’ve sent form to you for v a t exemption 

Ahh that's amazing...thank you so much. Lol I can't tolerate mint so I only use the slightly sweet ones...it's so funny isn't it!! I can't tolerate mustard either.... It can be in soooo many things though, hiding!!! I've tried so many things and my mouth starts to burn and it's a no no!! Xxx

This is it ..it's ongoing and you do have to keep trying. I still can't do curry too painful and rice is a nightmare too, just can't get it round my mouth and down my throat lol. Macaroni cheese is still a go to for me. I've managed a Guinness as it's smooth, anything fizzy is also a no no. Cornflakes in warm milk is also another good one and my go to breakfast at the mo with a sprinkle of golden linseed.

I still take pain relief (pregabalin) and a special tablet for lymphoedema in my tongue along with a number of other things but it's if they help that's the most important bit XXX

Hi Lisa for me anything  fermented triggers  burning mouth., so most hard cheese most yoghurts ate out  apart from  Greek style.  . I admit I still eat cheese I weigh up how much I really want a cheese sandwich and suffer the consequences. Vinegars pepper, citric all trigger me. I can do mint in peppermint tea ,orbit chewing gum  and the mint xyimelts.

Eggs in all forms are fine, I can now do salads iceberg lettuce only chopped very fine , I use either Greek yoghurt or cottage cheese as a dressing. Cottage cheese is fine and Philadelphia types. I now can do rice but took 3 years for me, I make my own tyoemif curry coconut milk coriander and cumin as aromatics lthen chicken thighs breast are still iffy. 
hope this helps 
Hazel x