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I was diagnosed with oropharyngeal cancer of the right tonsil back on February 12th (my 53rd birthday!) TNM 3:1:0.
I decided to blog about preliminaries before chemoradiation treatment, during treatment, and am now well into the recovery period (week 6 after CRT finished).
As well as covering personal experiences, I also look into some of the science behind the treatments and HPV cancers in men in general.
I'm also really happy to answer any questions. But just to say, the treatment and recovery are hard, and the side-effects BRUTAL, but you will get there in the end!
Hello Anson, good to see you and glad you made it through, I think blogs are really helpful for those writing them as well as those reading them so good to have another one. I actually re-read mine the other day (noticed a couple of typos) which I do periodically to remind myself what it was like, although when I started it was really just "cathartic" to get out some of what I was feeling. I shall definitely give yours a read. I was also 53 when diagnosed btw, but it wasn't my birthday....not the best prezzie.
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Metastatic SCC of right medial piriform fossa plus four malignant lymph nodes diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014.
Really interesting reading your blog, start to finish. The surgery sounded brutal tbh; I'm glad I didn't have that to go through. I'm so happy you've had your 5-year clearance!! I have my 3 month check in August, so I"m hoping that will be +ve.
And congratulations on the new grandchildren - just be careful on that bike, and I hope you're still enjoying the marmite.
Hello Anson interesting blog, so typically “blokey”
Vastly different in style to mine and Hazel’s ( she will be along shortly no doubt so you’ll have another one to read. Hers is famous and she has gazillions of followers )
Check out Penrod who has a very morbidly entertaining one too.
Kero well and keep sane Anson.
This is Hazel aka RadioactiveRaz I am now almost 22 month post radiotherapy for tonsil cancer with several affected lymph nodes. I too had 35 radiotherapy sessions and 2 outbid a planned 3 chemotherapy cisplatin. I concur with your blog my phrase is onward and upwards. I started my blog purely as a means if controlling something that is an uncontrollable situation and for a control freak like me at least it was the only thing I could control. John and I have been married for 41 years so reading your blog especially apart the sex part it does come back , but in our case for some reason passionate kisses have gone yep but too much information but I’ve shared a lot more with this lot in here. Lol.
I too was fit when diagnosed had just cycled 1200 km in Spain and 8 weeks post treatment I flew out and ride my bike 8 km hardest thing I had some but I did it. dry mouth is still with me and I know I have 2 months to reach the magic 2 years that consultants say what you have reached by then is usually as good as it gets. If that the case so be it am back to eating quite well I don’t drink or smoke but am living my life to the Max Am sure you and David will get there , baby steps and positive mental attitude did it for me.
side note I did have acupuncture for dry mouth 8/10 sessions and I do believe it helped immensely.
Enjoyed reading your blog and onwards and upwards.
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com
i give a honest account of my experiences with tonsil cancer
T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions. Now fast approaching the 2 years since end of treatment. Good luck to anyone starting out will always help if I can
Thank you :-)
It's all got a bit boring recently though, sometimes wish I could have another little spell in hospital.
I think I've posted before, but about 6 months after my last real treatment I suddenly got a downer and missed it all
Even now I like to slip my old red and white hospital socks on and just escape to my bedroom with a good book, I tell my wife I'm just nipping up to the ward for a while.
Sense of humour still there though eh?
You're blog is an amazing rollercoaster, but I can only read 4-5 posts at a time, as each new section makes me anxious for the next part!! I"ve stopped where you've had the mask made. Will resume at lunchtime :-)
Thanks! Not quite sure what is meant by being "blokey" but I'll take it ;-)
I started on Penrod's blog, and it is a roller coaster. Will get round to reading yours hopefully this evening or tomorrow. Its funny how they are all different styles; not unexpected, but I do like the fact that you can go back and see how bad things were, and far one has come through it all.
Funny you should mention the bike ride. I was training for an ultramarathon when I was diagnosed. And last night I went out for a 5k run and I had to run-walk the last k!! I know the fitness will come back, but that feeling of exhaustion is intense, isn't it!
yes it’s called radiation fatigue I no longer have the same energy levels don’t push your self .baby steps at 8 weeks post treatment we flew to Spain like I said it was a military operation luckily it’s our own long term rental apartment but 8 km on bike was my limit. Do things in moderation nutrition hydration and rest gentle pushing if exercise it was almost a year for me before I could ridec100 km ( am 10 years older than you as well ) . There is an article link on my blog or google Dr Peter Harvey he’s a dr at my cancer centre Leeds it’s After treatment -What happens next. Gives a good summary of what we are going through.
Just remember we are all different in the way we recover and how treatment affects us in my case dry mouth,get David to check if yiu still have your uvulva it does make a huge difference on dryness in throat.
Onwards and upwards Hazel xx
I just meant male and energetic
It was all I could do to drag myself through to the next day at times let alone be enthusiastic with my posts. I envy folk who can just get on with it! Luckily I’m married to somebody who can and he keeps me sane even if it’s bloomin’ annoying at times. Strange thing this Radiation Fatigue. I was never really brilliantly fit. A ten mile run was about tops for me but 2.5 miles is my limit; cannot do an inch more these days. My balance is not what it was so that’s Striding Edge off the menu too.
Eek, not sure I could do Striding Edge under pre-HNC times!! I honestly take what you say about low energy though. That's me at the moment, and is reminiscent of when I had glandular fever in my 20s; I wasn't able to get out of bed sometimes, and this current feeling is very similar.
I now want to investigate why even though I'm able to eat quite a lot I"m still losing weight, even more quickly than during the worst of my treatment. I"ve decided today to go back to using the Fresubin/Fortsip as extra calories to see if I can stem this.
I forgot to say that I'm reading your blog today :-)
I re read it for the first time for ages. Few typos and slight mistakes to correct but no Dominic Cummings factual Alterations
PS looked you up on Web.... nosey git that I am. Daughter has a geography First from Cambridge and now teaches drama and is penniless in Berlin.
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