A great day for your thread Ian, your great news  and now Mick improving, onwards folks!

Wow all,

Just up from nap to see so many nice wishes.

Thank you all again for your kind wishes and means a lot.
Nice special day for me I guess and was my grandmothers birthday on the 5th so hopefully she has been looking down on me having a hand in this.
Not sure if makes sense but not sure how I feel. I know I should celebrate but im probably still a bit numb by it all and being told cured after all this time.
Anyways, told a few people who are obviously delighted but already had comments like thats great you will be off morphine now and you should now book a holiday. Whoa there !
At the end of the day I'm still recovering , have fatigue and no great appetite yet, so need to dampen down others, including work,  immediate expectations for me to change and be well overnight.

Again thank you all so much and I wish all who are still going through treatment/recovery the very best.
I have met so many nice people on here and this has been a great thread to bring us all together for support and encourangement and long may it continue.
I do intend to be around as would like to still help and be here if needed for others but I think its probably right that I dilute my weekly updates now that I have this news
I will still contribute if anything crops up and will maybe do random general updates as will my blog.
Maybe little focus on me today becasue of news, but now time to focus on others who are still going through treatment/recovery and needing all the help and support we can give.

Onwards and Upwards to all
ian

Hi Dave 

thank you I am finding the more exercise I do the better I feel and the better I sleep.totally agree re saliva  yiu just take it for granted and trying to explain to anyone you see their eyes glaze over !

re. Champions  league was always going to be a tough draw so fingers x.

keep in touch and keep doing what you are doing superman

h x

Exercise and all that sun won’t be doing you any harm we are really jealous Hazel :cool:

Dont worry we’ll keep in touch. :)

H Dave deffo sun helps

h x

Hi Dave 

good luck for scan tomorrow you will be fine just part of the process. Hope your appetite had improved won’t mention football last night !

h x

Hi Dave

rooting for you as well re scan and fingers crossed all good news.

ian

Thanks you two :) Im quite relaxed at the moment and looking forward to getting it over with, i`ll update when I can.

Dave  

So today I had my mask fitting, not so bad takes fifteen minutes to cool down on your face, as some people said it like having a hot towel put on your face, breathing OK but would have liked to breath via my mouth rather than nose. When it was cooled I had to go for a CT scan with it on, fully cooled it felt quite tight and I didn't like how it squashed my Adams apple, made it hard to swallow. But they did say it can be heated up in that area and just pushed out a tad. Staff were brilliant and talk to you the whole way through, CT scan only about fifteen minutes not like PET/CT that takes forever, you go in the scanner three times, last one with some **** they inject into your vein. I also got my dates, treatment starts 23 April day after Easter, I have three Saturday sessions because of the Bank Holidays that are coming up. All are around the 10.30-11.30 time slots with a couple at 12 noon, not bad as light nights will still give plenty of day time. Treatment finishes on Sat 1 June so pleased it didn't run over into seventh week. 

Now the one I really dread my PRG fitting on Friday...

Sorry Oscar, I dont know why it pops your name up as a response to...

Forgot to say got £50 parking fine, left car park at 10 55am trying to pay by parking app, it woulnt take my password so I had to change it, hospital wi fi so so slow and droping out, it was 11.24 by the time I got the payment made, ticket was processed at 11.16 have watched the car from 11.05. Hey ho, costly business paying parking at hospital, got my free pass though today for treatment phase.

Hi oh no take it with you in Friday as a cancer patient surely you shouldn’t have to pay it’s hardly a pleasure trip and you are talking minutes !

good luck Hazel

Hi oh no take it with you in Friday as a cancer patient surely you shouldn’t have to pay it’s hardly a pleasure trip and you are talking minutes !

good luck Hazel

Problem is it isnt a hospital car park, it belongs to the swimming pool right next to hospital, it almost entirely used as hospital overflow car park. I will try writing to the council and see if they can void it but wont hold my breath...

agree with Clara it’s worth a try 

hazel x

Hi folks , not posted in a while. I am six weeks out of 33 radio sessions, last update i was doing well, eating pretty normally. I still am, but it is only right that any negatives get shared so;

My set back the past two weeks has been due to skin reactions. After 5 weeks on an expensive cream my radiologist said 2 weeks post treatment, let's go to a more normal aquaeous moisturiser. I had a bad reaction early on in treatment, my skin must be very sensitive, always was with metal allergies etc. 

I live on an island that produces aloe vera, tons of it. So i got a top local cream, was amazing for 2 weeks. Than all Hell broke out, well actually my skin broke out! All treatment area came out in a rash. They gave me a cream patients get who have chemo reactions, only available in hospital. Great for 10 days, then nurse said try aloe again. Why did i let her?! 2  days this time, same result. My radiologist intervened again, back to the radio therapy cream. 24 hrs later, my wife said " you look like you have been pulled out of a fire". And this time a rash spread down my arms and chest. They had said any more reactions they would send me to dermatology. So i said "sod it", went to my GP thinking id get sent to local hospital dermatology. Buy no, she gave me a lotion, said come back Monday we will figure out a cream. So the lotion has killed the rash and skin though dry is clearing. 

Been Hellishly frustrating as i feel almost normal bar some dry mouth and hair loss. Hoping i get the right cream for my hyper allergic pain in the *** skin! Good luck all.

Thats not so good TFS and hope you get a resolution. Seems a lot of experimenting going on.

Dont know enough about but if you have skin reactions is this just on neck or do you react to these in general. Is testing on another area before neck an option?

Your right to post the side effects as it can only help others and we all know its not all plain sailing throughout the treatment and recovery.

Good you are overall doing well and hope continues.

Ian

Hi TFS

its good to share not only the positive but the negatives then if someone else’s gets it they can take action .

news from me my saliva is slowly slowly returning to normal I have had a few hours when my mouth feels normal nit allmthe time and certain food dry it out totally. .

Yesterday I said goodbye to my toothbrush the curaprox ones which have served me well for the last 10 months and without them I don’t know wha5 I would do .intried a new electric tooth brush and YES YES YES itbdidntbgive me any pain and used it fine sonshiws the huge leaps my mouth has made Ok still having to use  the  duraphat toothpaste but that’s otobsbly forever. Food wise am eating as near normal as I can meat sometimes causes problems but nothing thatcwater can’t shift .

goid luck tonrveryine outvthere. Am still in Spain biking and walking living our life’s .

h x

This might not be of any use TFS but I had an area on my neck that was slow to heal, I came to the conclusion that I was putting too much cream on and so preventing any air getting to it, I stopped using the cream and my neck cleared up in a matter of days.

Dave

You know Dave, it is a very good point, because using the emulsion to stop the rash has left my skin shiny and soft as the dryness dissipates. Hazel said similar, a barrier effect too much cream. So the nurse may say same tomorrow. I think i have an allergy to aloe, pure and simple and now its gone, skin near normal so minimal cream needed.Iian, yes to your question, i get nickel allergies from guitar strings, and sensitive to other things, my mum had it too. Must wear gold or silver. Sensitive soul me!!

Hi TFS

Our team advised my husband to put nothing on the areas of skin affected by the radiotherapy, just stick with pain relief.  I did look at aloe gel, but came across something about aloe latex - he has a latex allergy so thought best to steer clear... 

It took about 7 to 10 days to settle, did look pretty scabby at its peak (d7 - 10 post treatment) but is fine now.  He does need to keep clothing away from it, has a fine collection of silk scarves now which the girls in the family, me included, will be fighting over when no longer needed!!  Interestingly the mouth symptoms peaked about a week after, thankfully now appear to have settled too.

Hope all is now ok for you

Hi j4 

how strange I also have a latex and nickel allergy 

hazel

Hi J4

Speaking of silk scarves for neck I have a selection of soft neckerchief/neckwarmers for when I go out.
My neck wasnt too bad really but I still like to cover up when I go out.

Ive put a link onto site . One i have linked to are the best I have come across and nice soft silky feel and perfect fit as not too tight or too loose. 
Also reduced in sale so good bargain (middle one reduced to £8.78) but if you type in neckerchief then neckwarmeer you will see the full range if you want others, but I swear by La Sportiva dedalus tubes.
Under armour from amazon is another good one I bought that I would recommend.

www.alpinetrek.co.uk/.../

Ian