hi all I'm new to this forum I was diagnosed with tonsil cancer 3 months ago I've had 2cycles of cistplatin and 5fu and I'm starting radiotherapy next week anyone I can talk to on here would be great feel so isolated.x
Sorry that you are feeling isolated. I found the Radiotherapy team excellent for answering any questions I had and they actively enquired every day as to how I was coping. You will build a relationship with the team and hopefully the isolation feelings will disappear, at least until treatment ends. As you probably know the treatment isnt the easiest and everyone reacts and has varying side effects in a different way. At your stage I felt similar and finding this forum was helpful and I found others that were ahead of me in the process, Hazel as Radioactiveraz has written a blog throughout treatment that I found very helpful indeed
I would say to you do everything the team asks and in particular stay hydrated and try to eat as well as you can, and try not to stress too much remember this has been found and will be treated.
I am 10 weeks post treatment for Tonsil Cancer T2N1M0 and I lost around 12kgs and only in this last week beginning to eat a more varied diet that just porridge and Fortisip supplement drinks!
There are enough people on here to help you feel less isolated and more focussed on looking after yourself as you recover
Any questions please ask away and the very best of luck to you
Welcome to the forum although I am sorry you find yourself here xx
There is some great support available here....and so I hope you stay and keep us updated as to your progress. It’s a safe and non-judgmental space you can come to whenever you need a chat xxx
I like to hang around here because it was my Mum who experienced cancer....I find it’s good to be around people in the know and so I hope you will hang around and see that for yourself xxx there are others here who are going through the same journey (like Ronco who posted above) and so you don’t have to travel alone xxx
I am into week 9 post treatment after 30 sessions od radiotherpy after being diagnosed with throat cancer.
You are more than welcome to chat and if you wanted a one to one then just send a friend request and you are not alone with this and a small club of us at different stages of this on the site.
I have kept a blog on here and updated it every week since the get go warts and all.
Its on here under Living with Cancer and entitles Radiotherapy for Cancer.
Many tips and also others input as well so give it a read as may help
I wish you well on your journey and although its not easy there is light at the end of the tunnel.
Keep us posted on your journey and feel free to join in my thread with your own comments and updates and or give me a friend request and if there is anyway I can help you I gladly will
I am also having treatment for tonsil cancer right now.
I have had two cycles of Cisplatin chemo and have 3 of 30 radiotherapy left to do. Have you had your mask made? It's a bit scary for the first few times but it's something you get really used to.
How is your support? Do you have regular meetings with your support nurse?
Let me know what questions you have and we can have a gab about it.
How did you tolerate Cisplatin, I had 2 planned but they had to change to Carboplatin for the 2nd one due to aggravating tinnitus. Almost there with 3 to go so that is great and the best of luck with your recovery. I had Chicken curry with rice tonight so a milestone for me ! It was ok but didnt taste the same
Hope all goes well with your treatment plan. I just finished my chemo and radiotherapy sessions for the same. It has been difficult but really impressed with how well it has all gone. Everyone involved has been brilliant and felt like I had the best care. I found the CRUK forum member Vatch's blog very informative. It certainly helped prepare me for the road ahead.
Hope you are getting on ok with your treatment. My husband starts his for the same in the next few days. I have found this forum a very helpful support, hopefully it will help you to feel less lonely. There is a lot of helpful advice here x
I was fine with Cisplatin and have only had tiny snatches of tinnitus. My big problem was that the steroids afterwards gave me terrible nightmares. They lasted for about a week each time and apparently this isn't uncommon. My first chemo was on the 19 the December and I was so groggy for so long that I slept right through Christmas Eve and Christmas Day was the first day I was alert and eating. The second chemo wasn't so bad but I was ready for that one.
I am currently making a list of things I want to eat when I'm able. I would give anything for a cup of tea. You know when you get one that's just perfect and you wish all cups of tea tasted like that? And a wee cake or a chocolate biscuit. Maybe a Marks and Spencer plain chocolate ginger. I'm a cheap date! Tea, coffee and chocolate were the first things to go. Then sweet things, so no Coke and acid things so no fruit juice. Then bubbles started to prickle my mouth so no fizzy water and I am down to tap water. And Ensures. Himself is off to the shops today to investigate the drinks situation but I think I just have to content myself with shakes and water. Actually drinking enough is becoming a problem and the nurses are threatening a tube. I only have two radiotherapy left, though, so I am crossing my fingers. I am envying your curry! That's on my list, korma and pakora and a pile of poppadoms.
Glad to hear that you are doing well. I know this will pass but hearing it happen to other people makes it seem more real. Tell me how it goes!
Yes it does help to hear other stories and as far a tea chocolate and biscuits are concerned I am exactly the same, no desire whatsoever. Having said that I am T2 Diabetic so if anything the side effects of treatment have really helped re sugar levels. Tea and coffee I couldnt face until about 10 days ago when although tasting a bit different i managed a coffee. Try and keep hydrated as I am sure you know it is important. I still feel weak from the lack of food but as my wife keeps telling me I have to treat food as medicine for the forseeable future.
I have seen changes in the last week or so though and I am eating more albeit I have to force myself
Dry mouth especially at night still an issue but overall feel as though I have turned a corner
Thank you for your reply and the very best of luck in the coming weeks
I'm done with the radiotherapy, yay! And I managed to dodge the tube but the nurse was still on my case about taking 2 paracetamol 4 times a day and eating and drinking and using the Gelclear. As if I didn't want to get better. But on Wednesday afternoon my mouth hurt so much I phoned my GP and went to see the new young guy in the practice because my own doctor was full. And he took one look in my mouth and went nuts. He couldn't believe I only had paracetamol, that I was expected to eat and drink because my mouth was "red raw!" To be fair, I don't think he had ever come across a burnt mouth like this. There can't be too many in and out of gp surgeries. So now I have liquid morphine and a topical analgesic spray. What a difference! Also, now that I can drink water, the mucus is coming up and I have just turned into a phlegm machine. (Oh, the glamour! Me and Audrey Hepburn, spot the difference...)
Anyway, things are looking up. Hope you are continuing your food adventures. Be well!
