Hi Garry,

First of all I am very sorry to hear about your diagnosis.

I was diagnosed with Tonsil cancer in June 2019, it had also spread to my lymph node in the right side of my neck. I immediately had a tonsillctomy followed by by x3 sessions of Chemo and 35 Radiotherapy sessions. My treatment finished at the end of August.

Apart from feeling dreadful for appx 10 days atter my first chemo session, the first 3 weeks of Radiotherapy were a breeze.

However, week 4 it all went bad for me but everyone is different so this does not necessarily mean it will be the same for you?

The pain in my throat became unbearable , I could no longer eat and even the strongest pain killers (Morphine, Oxynorm etc) were not working.

I ended up in hospital for 5 weeks while they tried to manage my pain. I ended up on Fentynal patches plus Oxynorm, Paracetemal and Pregablin so was not exactly with it for quite a while!

The feeding tube which they inserted in my stomach saved me as I was able to inject vitamin drinks which the hospital provide which kept my weight loss down to appx 8KG and they also enabled me to regain the weight during the few months after treatment, I would defintely recommend you go ahead and have a tube fitted as most people lose the ability to eat normally at some point.

I am now 14 weeks post treatment, throat still very sore , apparently due to scarring. Still get very tired some days and still have to use my tube to top up on calorie drinks as still cannot eat anything but soft foods, custards, soups  etc.

Had an MRI scan at 12 weeks which showed the primary cancer in the tonsil was clear but there is a small lump still in my lymph node but they think it is just dead cells. I have a PET scan next week to see if these cells are dead or active. If active next step will e to have it cut out.

You wanted the truth so I am telling you it as it is or at least how it was for me. 

The treatment is about as brutal as it gets and I am sure your Oncologist/cancer specialists have told you of all the potential side effects. I am told it can take a year or more to feel 100% normal again as your body is put through so much.

However, the chance oif being cured with this type of cancer is high!

Keeping as positive as you can is so important during the whole process!

Hope this helps a little, feel free to ask me any other questions you mght have.

Cheers 

Kris

Hi Garry welcome  to the club no one really wants to join. This is  Hazel aka RadioactiveRaz I am 16 month post radiotherapy  tonsil cancer with several affected nodes .

I had 35 radiotherapy sessions and 2  chemotherapy,treatment is brutal recovery can be long but the final outcome is positive.i was 61 when I started treatment and if I can do it anyone can. I am a wimp who cries at a broken fingernail but I didn’t it.

i have a blog detailing my experiences 

www.radioactiveraz.wordpress.com  give it a read and ask any questions.if yiu prefer one to one send me a friend request 

there’s also links to Ian aka Anchor 1797 who has a blog and links to other info.

Hazel x

Hi Kris

Thank you for your very upfront and honest appraisal of your journey so far, you my friend have been through the wars! you've helped me make a few decisions should I encounter similar circumstances, firstly that at the first sign of mouth/eating issues I'll request a tube, secondly to take everything offered in pain relief.

on the matter of your tube is it up through your nose?

you're undoubtedly a very brave guy, I have enormous respect for you and the journey you've been on to date. I wish you well, hope you have a peaceful christmas

the very kindest regards

Garry

Hi Hazel

You are a very inspiring lady, I can only hope for the courage you have had through your journey. wishing you a peaceful Christmas and good health in 2020 

love and respect

Garry

IHi Garry   Thank u. Quick reply the peg in your tummy in my case u didn’t face that my oncologist said I wouldn’t need it but had to agree to nasal tube uo nose if eating became too difficult. Which it did in week 4 I had the tube fitted it was in 6 weeks well had it changed stv3 weeks as only allowed in 3 weeks. The peg is decided by your consultant s well it was in my hospital trust  be guided by then. We are all different I was never hospitalised i was relatively ok   

Good luck 

Hazel 

Thanks for your reply and your kind words Garry,

I had the tube fitted at the beginning of my treatment, week 2 I think. They cannot do it once the treatment is well on its way so ask what your options are now ratrher than wait. If someone asked me for one piece of advice only, it would be have the tube fitted!!

They sedate you, the tube goes straight into your stomach, not through your nose. You then feed your meds and vitamin drinks directly in to your stomach. It stays under your clothes so no one knows you have it. I thought about this alot as I didnt want another minor op after having my tonsils out but it was the best thing i ever did!

If you do not have this fitted early and you cannot eat further down the line, the the only option is to have a tube inserted in your nose which is far from ideal!

I hope everything goes well, be positive and remember however tough the treatment is, the stats are in your favour for a full recovery, regardless of how long that takes!

Out of interest, have they said that the cause was the HPV virus?