Sorry for not posting proton update

Thanks for the update Lisa and well done so far.

I wouldn't descibe my neck's reaction as spotty - it was more like really bad sunburn and I've got very fair skin.  I think our skin can react slightly differently depending on the individual.  I would just make the radiographers aware when you're at your next appt.

Keep at it.

Linda x

Hi Lisa. Thanks for posting an update. You are quite unique here as you know and we are all mighty interested in how things go  

I’m not particularly fair skinned and I got away with a bad dose of “sunburn” with hot skin and some cracking, nothing bad. 
Line Linda said do tell your RT team although I feel sure they will notice. 
it’s important to keep your skin moisturised. I used Alie Vera gel applied in the car in the way home and Cetraben two or three times in the day; nothing just prior to treatment. If it does get bad there are lots of prescription remedies. 
Keep going. 
xxx

Hi everyone,

It really is a spotty rash lol... The team have seen it and advised trying a different moisturiser than the one they gave me and also trying antihistamines. Up to now no one else has had this reaction so it's a bit of guess work.  My dads part Maltese so my top half tans quite easily but ive never had anything like this before.

I read someone's message and they mentioned about the salty mouth taste.. Oh my, its disgusting isnt it! Absolutely no pleasure in eating food at all. And intermittent tinnitus too...

Any tips on anything greatly appreciated. 

Lisa xxx

Ah now tell the team about the tinnitus. It’s caused by the cisplatin and can be permanent and while you are concentrating on staying alive and consider it unimportant it can cause you a lot of grief once you are better. They can change the chemo or abandon it entirely. It’s the RT that does the curing. The chemo acts as a radiosensitiser and makes about 5% difference to survival. 
Just a thought. 
As for the horrid taste that may well not improve until well after treatment ends I’m afraid. Food for now is fuel only but honest it does get better. I promise. 

Your skin might well be having a reaction to the moisturiser you're using so trying a different one is a good idea.  I know I had a similar rash on my face when my skin took a sudden dislike to something I had been using - Cetraben worked for me.

My taste buds went all over the place.  I just had to keep trying different things that I could manage.  Eventually I found just a couple of that were bearable because they tasted of nothing at all.  It was just fuel in the end I'm afraid.

Linda x

I can manage to eat porridge with double cream at the moment so will stick to that as a go to i think. 

It is really hard to guage what is going to taste ok and what you can actually eat. But like you say you have to try different things because it changes very quickly.

Ive started to use a different moisturiser and I'll definitely mention about the tinnitus too.  If the chemo only gives an additional 5% then maybe they'll not bother lol.

Thanks so much for your advice it really is so appreciated. 

Xxxx

Well done for theporridge with double cream.  Anything you can eat with full fat milk/double cream etc will help with the calories.  I eventually had to move onto Ready Brek with full fat milk as porridge proved just too difficult to swallow as treatment progressed and I couldn't manage things like double cream or ice cream.  The other thing I found that tasted of nothing was tinned semolina.  Sounds horrid but it worked for me!

Linda x

Ive been hitting the scrambled eggs, semolina (I actually like semolina lol) rice pudding, custard, im going to try Ready Brek too. Im getting some yoghurts and ice cream too.

Im dreaming of sinking my teeth into a doorstep of bread and butter filled with chips... Although i think itll take a little while to achieve this

Xxxx

I hope you can continue to eat yogurt and ice cream.  I used to love yogurt but couldn't bear the taste during treatment and ice cream was somehow too gloopy.  Rice pudding also became too lumpy for a while but eventually I was able to progress back onto it from semolina.

Best to keep an open mind on the food front.

Good luck.  

Linda x

Hi lisa

i thought I had replied sorry. I only had 2 out of planned 3 chemo it really is an add on to the main event. I came through it unscathed I was lucky but do please tell them about tinnitus as they may change to carbon platin which is gentler. 
food for a good  while becomes eat to live  as opposed to live to eat . Salty metallic taste is common. As for sunburn I am fair so I did burn quite badly but am ok niw. 
hazeln xx