Side effects following on from Radiotherapy

Hi Moz

They should have told you at the hospital to expect the effects of the radiotherapy to continue to build for around 2 weeks after the last session.  I found it was around 3.  I was pump fed for the first 4 week post treatment and frankly slept most of the time.  Thereafter there was slow improvement, with backward steps.  That is the way it is even 10 months post treatment.  You mother will be very fatigued and will need frequent rest.  I was off the heavyweight painkillers around 3 months after treatment.  By that stage I was eating well enough not to need my PEG for anything and it was removed in June once I had a clear PET scan.

We are all different in our response to the treatment and subsequent recovery.  Recovery will be long, sometimes painful and frustrating.  Think marathon rather than sprint.

She may manage to have some enjoyment at Christmas with the family but she needs to be careful not to overdo things.  Eating will be, at best difficult, and even now I am dreading the Christmas Lunch.  I will be able to eat it, but I think a lot of us find difficulty as eating is such a social event and we may not do our food justice and whatever we do will take a long time.  Tell her to move at her own pace and not try to please others.  Also tell the rest of the family to be gentle on her and not expect her to back to her old self at Christmas.  I am sure you and she will enjoy Christmas - it will just be different to previous ones.  However, that is a small price to pay for enjoying many more family Christmases in the future.  Next year's will be so much better.

Hi Moz

T2N1M0 Tonsil cancer HPV16 plus finished chemoradio treatment in June 2023.

August 2023 before I started seeing improvement.. slowly at first then it started gathering pace, PEG feeding tube came out in late September, started eating bigger meals in October (2023), went to the Canary Islands shortly after..... patients have different improvement rates, one size doesn't fit all... 

Take care 

Peter 

Hi Peter

Thank you for your reply. I really appreciate this. It helps to hear from people who have been through it. So much suffering with this treatment. I do hope you are doing better now.

All the best.

Moz.

Thank you Peter.

This is very helpful to have some indication on timeline.

I hope you are doing well now.

All the best 

Miranda 

In all honesty, 10 months into recovery and I am doing really well.  I get frustrated with the rate of recovery and strangely I don't really miss the foods I can not eat at the moment.  My diet is varied but tends towards the "sloppy", greasy and softer foods.  Pastas are great, but I would not go near a pizza.  Steak is off the menu, but steak pie is very much on the menu.  I have travelled extensively in the UK since treatment and now have travel insurance in place for next year.Everyone recovers differently.  Hopefully, your mum will find her "new normal" that gives her a good quality of life once well into recovery.

Hello,I hope your Mom is feeling better today.I didn’t accept any feeding tube either and ate though the all process.I ate and slept the last week of treatment and first week of recovery.my sore lasted about 3-4 months after treatment,it was in the corner between the jaws.Each day after treatment you may feel better and some days you feel worse on others unfortunately.Have your Mom eat good healthy meals and try to keep busy and moving.I worked doing and after treatment every day,For me it’s made all the difference in my health.But I am also only 60.I am a year post treatment and still some days I feel not the best but I feel like it’s getting better.We are all different and react differently to treatments.I wish you and your Mom the best.

I'm three months  in post treatment. I still don't have an appetite and have lost nearly 4 stone. I still have pain and some burning ( especially with chocolate), have some taste, but it's all still a bit strange. Fatigue is the worst thing for me. I've also had to return back to work 

3 months is pretty early in recovery for many, my taste and appetite returned gradually....at about 90% now...weight loss? are you using a feeding tube?

Peter