New here tonsil cancer

You're so very welcome Wendy. I totally get what you're saying about people telling you you're so brave. I'm not brave that's for sure. I needed a calming  tablet to have the mask fitted. This was totally out of character. They then gave me a support person who was amazing, she met me for the first week of radiotherapy and talked me through it over the intercom. After 5 sessions I could stop taking the tablet each day and I didn't need Ester to help. Radiotherapy staff are fantastic. They really get it. Xx

My doctors have already told me that apart from the tonsillectomy , surgery wouldn't be my best option as it has a very harsh recovery and like yourself I would still need radiotherapy/ chemo . Because they are pretty sure its contained they said it would be easier to target as well . Did you only complete 2 courses of chemo because that was enough? How do they know ? Sorry for all the questions x 

My tongue cancer was inoperable. I had no nodal spread so avoided chemo. I had six weeks of RT. There isn’t much to report in the first two weeks but after that the discomfort ramps up into pain. BUT… if you have the right analgesia you can be comfortable. I was on morphine for 16 weeks before I started a phased withdrawal. There was never a day when the pain was unendurable. I must say I slept a lot at the end and the first two weeks after treatment end. 
I wasn’t brave either ( I think people say that without thinking, maybe to reassure you that you’ll do it) of course you do it, there is no choice. I just did as I was told and rode it out. 
I don’t think we fight the cancer( though fighting may well get some people through) Our team fights the cancer. They are do it every day and they are good at it. We fight to stay sane. 

It's no problem answering anything. I wish I'd have known about the group. I became quite ill around 2 weeks before the end of radiotherapy. Just very tired, run down and in pain. They kept me in the hospital at St James for the next two weeks and didn't want to risk the last chemo making me worse as radiotherapy was the priority. Chemo just helps. They said many people don't manage the chemotherapy as planned. If course at the time I was disappointed as I believed they were just being optimistic. I now know from this group that its a fact. I was glad to be admitted to be honest, it felt safe and the cancer ward I was on was amazing. It was an eye-opener though. I don't want to scare you, basically I'd run out of energy and they controlled the pain so much better. My neck had terrible burns. These healed within a few weeks. 

Hi there, we had our treatment in Swansea … sorry I say we … I mean my husband, although I must admit it definitely felt like a we time.

He had Stage 4 tonsil, tongue and lymph node cancer , diagnosed on the 5th of Dec (happy Xmas … not ) and the treatment started on the 19th. The tests, teeth removal etc were a blur, they had to move fast and they did. 2 rounds of high dosage chemo followed by 6 weeks of RT. He was hospitalised week 3 as he had an infection and remained there until the end of treatment.

It’s been a very bumpy road but we’ve got through it. They say treatment is hard but recovery is brutal. He’s been given the all clear and got to ring the bell … any questions ask. The people here are unbelievable and will give you all the virtual support they can.

It’s a tough time hon, but stay with us. We will help you through. We’ve all been through it, either as a sufferer or a carer. You will always get a response from one or many of the very kind folks here.

Take care hon, Hugs from west Wales. Xxx

Deb11 said:

He’s been given the all clear and got to ring the bell …

Has singleton got a bell now ? 

Hhmm … not sure. We got the all clear at Morristons … they have a bell there

Ah yes, 

The one with the grammatical error ( trust me to spot it! )

Hello Wendy, just popping up to say welcome to this lovely group, I found it so helpful when I was going through diagnosis, treatment and recovery.

Not going to lie, I had a lot of trouble with nausea & sickness towards the end of treatment, but I didn't get many of the other side effects. As others on here have said, CRT (chemoradiotherapy) hits everyone differently. Just make sure your team is aware and get them to give you stronger anti-emetics if you need to - they have multiple options. 

Sending solidarity, love & luck

Catriona

Hi Catriona , Thank you for your reply I really appreciate it. Im meeting the whole team of support that i will have on Monday now. I had 2 teeth removed yesterday so feeling a little sorry for myself and im also due to have a PET scan ( this was optional but I thought it the safest way to go ) and mask fitting ready for treatment.  My treatment they are hoping to start on September 8th and that will be for 6 weeks radiotherapy ( 5 times a week ) and just 2 days of chemotherapy. Hoping that myself and my husband can get away for a couple of days prior to the treatment starting for just some chill time . Still feels very surreal like im watching it happen to me ! Strange ! But again thank you and everyone on this group for the support right from the minute I posted. Its helped immensely xx