Today I had my MDT meeting with the consultant and she confirmed I have stage 4 back of the tongue cancer which has spread to the tissue surrounding my throat and both the lymph nodes.

It seems I have a combination of both the HPV virus types but they are waiting for the final biopsy to confirm this.

Apparently no lymph node removal or neck dissection will carried out unless the treatment fails to work.

I was informed it was treatable, but she recommended that I take a trial that would combine immunotherapy into my 6 week Chemo and radiotherapy course, so the combined side effects I would imagine will be quite uncomfortable to say the least, however if it works it will hopefully be worth all the discomfort, if anybody has a similar experience I would be keen to hear their stories.

My treatment starts in 4 weeks time (which is nearly 3 months since I was diagnosed).

The last 2 months of anxiety and worry have been very stressful for my wife and daughters but they have been strong for me and now that I know treatment will soon start I feel at last things are moving forward, I might even get a full night sleep tonight without waking up during the night in a sweat and panic attack!

Dentist on Friday for teeth removal then my radiotherapy mask preparation and peg fitting the week after.

Best wishes to you all.

Peter

You are stronger than you realise keep positive it's six weeks start eating plenty now

Thank you for your kind words, I'm eating plenty but my weight still keeps dropping, hopefully things will improve soon.

Hi Peter, Its alot to take in all at once and you probably prefer to start straight away. Get it over and out of the way. That was the way with me anyways......but time will come around sooner than you think. 

I am getting 5days of Radio. with one day of chemotherapy with Radio. The day I have chemo is very long tiring day. 

I have managed to maintain my weight this week which was great news. Hope to keep it the same next week.

Stay strong Peter. Take care.

Mary.

Hi Mary,

Good to hear from you and well done on keeping your weight stable that is good news long may it continue.

Glad to hear your treatment has started and on course, mine starts on the 8th November which seems ages away and will be the same as yours but with immunotherapy added on a weekly basis which i'm informed has some nasty side effects when combined with chemoradiotherapy, however it has been to be done and I will try my best to stay strong.

Hope all will go well with you Mary.

Best wishes.

Peter.

Hi Mary, thanks for thinking of me. I’m on my way home from treatment 25 so that’s five weeks done, home stretch! I’ve been lucky so far, I’m eating semi normally and not feeling too tired. I’m not having chemo which must help a lot. 

Two other things have been helpful. Exercise 30m 3 times a week and salt gargle. I loathe exercising but the team have been explaining all the benefits to cancer patients: it helps get blood flow to tumours (especially for large/dense tumours), it helps circulate the treatment, it produces anti inflammatories, it helps with fatigue. I’ve been (reluctantly) out every two days for a slow 30m jog rain or shine, and I do feel better the next day. The salt gargle helps with the soreness as well as keeping everything clean, not a lot of saliva anymore. 
I got sent a YouTube link from Christie's NHS hospital with all the mouth exercises, if you need it let me know! I'm sure you're already covered after your session.

I also eat fatty smoothies, with avocado, banana, full fat yogurt, nut butter and so on. I know that’s probably not for everyone!!!!

You’re almost halfway Mary, just showing up everyday is brave. I hope you’re staying positive and making plans for the future. This second half will go really quickly, and then you can say goodbye to that horrible mask forever. 

Take care, enjoy your rice pud :-)

Hi Erica, Your doing wonderful. Well Done You. Your nearly there. I have a bit to go yet.......mouth is sore. Have been doing the salt and water. I find it very good. 

Chat again soon 

Mary.

Hi Erica,

Well done, you seem to be coping very well with the radiotherapy and I'm certain it's because of your positive frame of mind, you are right about the exercise as I'm certain it plays a very important part in the treatment and recovery, I do hope I've the same motivation to do the same.

My letter arrived from hospital yesterday detailing my 35 radiotherapy treatment times and dates, the last one being on Christmas Eve! it will be combined with 3 long chemo sessions with overnight hospital stays, this all starts on the 8th November.

This coming Monday it's the mask, CT scan, consent forms, dietician and the McMillan nurse chat, so a busy day at the hospital, a few day later it's the RIG fit  with my first ever overnight stay in a hospital which to be honest I'm not looking forward to!

Mary, I do hope you you are keeping your spirits up and that you are not too tired, you must be on your fourth week now so you are past the halfway point, I'm prepared for the tiredness from radiotherapy, but it's the thought of the chemo side effects that's making me anxious, however I think I'm ready mentally and hopefully physically for whatever happens in the weeks to come.

Best wishes to you both.

Peter

Hello Erica. I'm well past the treatment stage for Stage 3/4 but still have a lot of difficulty with eating,still mostly on blended foods, as my new bit of tongue is still not working well. I'm interested in the YouTube exercises you mention as I have only managed to find American ones so far and would prefer NHS. Would you be able to forward the link to me? Many thanks. Sue