Hey Simon,

This is exactly the situation I find myself in at the moment.  49 y/o man with similar situation (left sided lymph not right). I've also had an exploratory surgery to check tonsil mass is operable / biopsy. 
 

I am incredibly nervous about what is coming up - presumably a big op and then chemo/radio so I'd be super grateful for any pointers/tips/reassurance.

Thanks,

James

Hi James,

Sorry to hear about your Cancer. I'm not sure on what treatment you will be having, I had both Tonsils removed and had a Neck Dissection done on my right side to remove the Secondary Cancer that had built up in my neck Lymph Nodes. This was then followed by 6 weeks of Radiotherapy but luckily for me I didn't need any Chemotherapy.  I had my Operation in Oxford by one of the top Consultants there and thankful all went well in the end and I've just passed my first year Cancer free. 

I'm not sure if I had this treatment because it was the best option at the time or whether it was because of COVID as my Operation was done at the end of April last year. The Consultant in the beginning asked me if I wanted to either have Radiotherapy and Chemotherapy first to see if that reduced the Cancer or go straight in and have the Operation, I asked what his thoughts were and he recommended to have the Operation, so I did. 
 

I won't say everything was easy because it wasn't and it's still isn't. The biggest problem I had after the Op was they never put a feeding tube in and I couldn't swallow anything apart from the smallest amount of water for the first 3 days and even then it would burn on the way down. Eventually it was explained to me that the best way to drink was to hold the water in my mouth for a couple of seconds and then swallow, this was because I had to give time for my voice box to close first before the water went down which is why it was burning. Once I got used to that things slowly improved, however it still took me a good couple of months before I could get on to any solid food's again and I lost 3 stone in weight during that time. I still have issues today with swallowing, food can still get stuck and I have to cough it back up and there are times when I drink things like coffee or fizzy and instead of it going down it decides to go up and comes out of my nose, which is a great party trick. I have been told that this is expected and is probably going to be my new normal and under the circumstances and I'm happy with that. 
 

Overall I have definitely had some good and bad days, both mentally and physically, but I'm still here and that's the most important thing. There is a light at the end of the tunnel and you've got to do your best to think positively and fight your way though it but I also know that's easier said than done. Always talk to family and friends about it as it is good to talk and get things off your chest. 
 
I hope that this has explained a little bit of what I went through but we're all different and we all need different treatment. I'm happy to chat some more if you want and I wish you all the best as you move forward with your treatment. 
 

Simon. 

Thank you for your detailed reply, Simon.

I grew up in Headington so I know the area really well -  my Dad worked just round the corner.

I'm so glad you made it through albeit with some issues.  I've been told it would be no bad thing to put some weight on - and I'm now at my heaviest ever of around 14 stone so hopefully that gives me a little extra weight to play with!

It's my big treatment meeting today following last weeks exploratory surgery.  I'm nervous as hell, as you might imagine.  At least we'll know more tonight.

James

I hope everything went well today...

A good day, thanks for asking.

It's a HPV positive tumour - which means surgeon thinks my chances are 85-90% at one year.  I'm really relieved.  Having a gin and tonic - first drink for nearly a fortnight.  

I've got a tough run through to Xmas though - surgery on the 18th provisionally, then a few days in hospital and recovering at home until fit for six weeks of chemo/radio. 
 

Asked if I want to participate in the PATHOS study which is a complicating feature. Basically a random allocation to three groups, one of which has no chemo and one has a reduced level of radio.  Not sure about this yet.

Good luck to all of you with your treatment.

I found it, the treatment, to be the least frightening part of having cancer. It actually gave you something to focus on in your efforts to get better. The most frightening part for me was the run up to the diagnosis, the not knowing, and then the whole world being turned upside down. But hopefully you're past the worst of that now.

The more you learn about the disease, the less it seems like a bogeyman. And when you get through your treatment, which you will, you will have achieved something you probably thought too horrifying to imagine in the blissfully ignorant days before cancer ever knocked on your door. Over time, you will come out of it with a much more mature and profound understanding of life - and a new sense of what is important in life.

For situational reasons, I was treated by removing first the left tonsil, then on identifying a separate non-metastatic cancer 9 months later, the right, each with a precautionary neck dissection, which both turned out to be clear. With clear margins and a clear neck dissection, I avoided chemo & radio therapy twice.
 

My consultant says I was exceptionally lucky to identify tonsil cancer while at Stage1 not just once but twice: the sword of Damocles still swings above me, but in reality it swings above everyone's head. It's just that most people don't know it's there!

I was 49 at the start of it all. HPV positive.

2.5 years since 2nd operation.
2.5 to go.

Bon courage!

Hi James,

It's good to hear your in a slightly more positive place with your treatment and you know where all here if you need us..

Hi James,

It's good to hear your in a slightly more positive place with your treatment and you know where all here if you need us..