Hi S

Im sorry to hear this and hope your Mother is fighting through. It's definitely a tough old slog.

I finished radiotherapy last Friday and start my final cycle of chemo tomorrow to Thursday. Definitely feeling rough but pleased to be finishing treatment. I'm hoping to start the rebuild towards the end of this month but will be doing everything I can to feel normal before then.

all the best to you and your Mother.

to health & strength 

mike 

Hi all.

I sit here, awaiting to get CT and MRI scans done tomorrow, and a planned video call with Specialist the day After, hopefully to get outcome of biopsy and scans

All started about 6 weeks ago, when i discovered a large lump on the right hand side of my neck, approx few cms from jaw and throat, after an initial scan, showed Abnormalities in lymphnodes.

Referred to specialist, who completed a biopsy and did an endoscopy, specialist did state he thought potentially Virus related cancer in tonsil area and swollen lymphnodes. 

I am not a big drinker, maybe out once every few months, and never smoked, did not have any sore throat etc. Only finding lump was a clue something was wrong.

So awaiting results on Friday 12th June2020. 

As a 51 year old, it came as a bit of a shock that you could have Cancer, and at this point i am still scared, although not showing that to kids/wife etc...

Pleased to hear the positive stories. 

Hi Bobby

Thought I would drop you a line, hope your results went ok.  I was diagnosed with OPSCC on 28 May left tonsil and large left lymph node, due to start chemoradation on 6 July, so still waiting, seems to be a lot of that going on, makes me a bit anxious.

Hope your doing well

Pamela

Hi Pamela.

Thanks for your reply and comments.

Yes i was also diagnosed as cancer on my right tonsil and enlarged lymphnodes on both sides of neck although 1 much larger on right hand side.

Getting 6 weeks of Chemo and Radiotherapy from 20th July, very daunting the potential side affects etc, but alleged recovery rate is high according to the specialists, so bit more comforting compared to weeks of uncertainty, certainly risk of looking at potential worse outcomes was a lesson earned, and will certainly be a bit more thankfull. 

Told first few weeks of treatment ok, but will be tough after that..

You mentioned feeling anxious, not surprised, imagine as first few treatments done you will at least be on that journey, just hope you have good support round you, as i think we will need support longer it goes on.

Stay strong and safe

Bobby. 

Hi Mike.

I am 51, and away to start 6 week Chemo and Radiotherapy on 20th July. 

I see by your post you finished treatment early March, how did you feel through treatment and how long till you felt strong again? Appreciate everyone is different and treatment maybe different also.

Plus any tips? 

Hope you are doing well.

Hi bobby.

I'm still cancer free, (I hope), so far.

They havn't been checking me as much because of the lockdown, but I have got an appointment through for a check-up in a couple of weeks.

I also don't drink much and have never smoked. My tonsil cancer was related to the HPV virus.

Best of luck with your trearment mate. I've heard lots of possitive stories from people I've meet with the same cancer as you. 

Hi Bobby

Sorry to hear of this news and I also apologise for not reaching out to you sooner. My battle has been raging on over the past month and I'm now in hospital recovering from second surgery in three weeks.

First things first, my journey is almost certainly going to be very different to yours as I was the lucky recipient of Small Cell Cancer as a primary in right tonsil  which also spread to my right lymph nodes. I am only the 15th case ever so not much literature for me other than Small Cell is a lot more aggressive than HPV Squamous Cell. I assume this is what you have. 

I imagine you'll be having weekly Cisplatin with 5 week day doses of radio. I found the Cisplatin to be bearable but also had to have Etoposide on top of that which really messed me up towards the end. Regarding the radiotherapy, this is tough and a long long road. But you can and will get through it. I found after three weeks it started impacting my ability to eat and this lasted for around 5 weeks before i could get back on solids again. I lived on 6x400 calories Ensure shakes a day. I hated it and if had my time again would've had a PEG line put into my stomach so i can have food pumped straight in. I'm sure you've discussed this with your team. There's also a nasal feeding tube you can have inserted. I tried this towards the end but was not a fan.

You should definately read [@RadioactiveRaz]‍ blog as for me it was a great indicator on what's in store, although again, we're all different. Hazel is an angel and will no doubt share her wisdom and positivity with you.

Please also feel free to send me a private message (I'll send you a friend invite now) and ask me anything you like on this forum. It is a place of sharing and caring and everyone pays it forward. 

Be strong and try not to overthink. I've had some set backs recently but this is likely unique to my particular rare case. At least it appears to be in review of the survivors on the forum. I'm now of the opinion that all we can do is manage the time from the present moment to whatever event is next (be it the end of treatment or a scan result). Just try to live your life and do as many normal things as you can. 

To Health & Strength

Mike

Thanks Gazzer.

Apprecite you taking the time to respond. Good news that you are cancer free, and hope that is maintained.

Chemo and Radiotherapy starts 3rd August now, getting Peg tube fitted on 22nd July also.

Certainly whole experience has been a rollercoaster, with many ups downs and turns to come. 
 

Morning mike glad you’ve popped on and remaining cheeey. Let’s hooe the boys win again today you are an inspiration as well

love H xx