Squamous cell carcinoma of left tonsil, P16 positive, T2 NT M0 - treatment 2 chemo and 33 proton therapy

Hi Shaun.  I think 9 weeks is very very early to expect too much.  I felt dreadful   You are not alone.  I just couldn’t push myself physically it was just not worth it.  I just gradually kept plodding on.  I had terrible nausea. It started when I was on the morphine etc and gradually eased over the months. Even now, 16 months on, I can get a tiny bit of it occasionally.  My energy is great now-not quite as good as ‘before’ but good.  This is the thing I am most pleased about as I think my recovery has been quite slow.  I just felt I couldn’t rush anything.  Try and keep calories up.  Take tips from on this forum.  I could eat avocados, double cream, banana smoothies etc to give me lots calories. Also bone broth for protein which we need for recovery. I think this treatment is very tough but we can come out the other side. Just take it easy. You will get there in the end. I have found it hard though. Wishing you all the best.  Lizzie

Hi Shaun.  Sorry, I forgot to talk about lymphodema.  I sm still bothered by it but it is much better than it was. I wear a Hereford collar, which the lymphoedema team at the hospital gave me.  I wear this in the mornings while I am doing my chores etc.  I also do massage and go privately to a lymphoedema specialist. Lizzie

Hi Shaun although you might t it think it 9 weeks in the grand scheme is still early days. Be careful of trying to do too much. What you’re experiencing is more than likely radiation fatigue. To be honest yiu can’t fight it by trying to do more and work it through. Radiation fatigue is a totally different ball game. I had it for quite a while I became the expert at power napping. To start with its listen to yiur body it’s been to hell and now is in the way back. I’ll pop a post from a consultant Dr Peter Hat yea ut sums up the after effects of our treatment very well. I used to have a nap most days to start with was an hour ie even longer but if I listened to my body and rested I then could carryon Exercise  is good but moderation i was  cycling 60 km a day prior to diagnosis, took me over a year to get back to that level. It’s all about recovery now make sure you are eating I was told 2500 calories a day and 2-3 litres of water. Inwas 61 when diagnosed and fairy fir. I did loose muscle mass protein for me was the key to recovery. 

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

i printed copies off for family and friends . Re lymphedema check with hospital about a lymphoedema clinic , any issue I woukd contact consultants as with proton beam am sure they would want to know what’s happening  

Hazel x

Hi Shaun. The other ladies have just about summed it up but I will add that you are doing yourself no favours with your vigorous exercise regime. You need rest to heal which you’ve discovered so walking is ideal.  Your body needs protein to recover from the damage done by the radiation so mix yourself up some protein shakes and add them to your diet. Don’t push it. Be patient and you’ll surprise yourself. 

Thanks everyone for the very useful advice. I have to accept that I am in for a long haul and just as you have suggested allow myself time to heal. I have had some anxieties about getting back to work but I think I have to work on myself first. This forum is like a stepping stone which in someways helps me gain rebalance along the difficult path towards recovery. Most importantly I don't feel alone as much when I interact with you kind and lovely folk so thanks very much.    

You’re very welcome Shaun. We don’t realise how much the radiation does to the rest of our bodies. You’re in a hyper metabolic state for months. That’s why it’s so easy to lose weight. If I had a bad eating day I could drop a kilogram over night. I kept some Fortisips back to top up if I needed. 
Work on six months as a sort of guide for a phased return to work. That way you can pace yourself. The better you heal the fewer long term effects you’ll have to put up with. 
Do have a read of the Peter Harvey article Hazel linked. It deals very well with what our minds are doing. 

Hi Shaun

I hope you are doing well  and feeling better.

I have been offered chemo and proton therapy after being offered chemoradiation. I turned down the pathos trial as I thought more surgery and neck dissection then chemoradition was a bit much.

It seems proton therapy is better long term. As you have had this would you be so kind as to let me know your experience please?

I have to travel to London UCL hospital which is about an hour by car or train so maybe that is a no. I'm not sure how I would cope.

I have T2 N2 M0 HPV + right tonsil.

Thank you so much 

Kathy x

Hi there

I was offered surgery but opted for proton therapy and chemo. I must say the treatment and recovery is tough. I was well looked after on the trial. My throat has healed remarkably well and eating well although due to dry mouth and occasional flare ups i have some challenging days.I have a range of side effects but it's only 24 weeks post treatment and still early days in the grand scheme of things. I have no regrets opting for the trial and think I am making good progress. Hope this helps and your recovery goes well. The people on this site have helped me enormously through the ups and downs. There will be challenges no doubt but try to remember the better days will come. Best news ever 6 weeks ago as no sign of cancer.

All the very best

Shaun

That's is the best news and I'm so glad it's worked for you.

Thanks for the help and i appreciate you taking time to answer me.

It's a tough treatment and recovery whichever way I choose to go.

Best wishes to you 

X