5 week post treatment for HPV 16 tonsil and neck lymph nodes x2 - proton therapy x33 and 2 chemo cisplatin

Hello. A lot of your issues & worries resonant with me ‘ I’m sure also with many others on the forum. At 5 weeks post treatment I felt the same as you. I was in a very dark place & contacted Macmillan live chat. I was offered phone counselling & cannot recommend it highly enough. It gave me coping strategies, & a space in which I could cry & say all the things I wasn’t able to say to my family. The swelling in your neck could be lymphoedema. I have it under my chin. I was referred at my own request to a specialist nurse & have daily exercises to do wearing a beaded collar. Beesuit on this forum has a fab video showing a simple effective massage technique. I was very depressed coming off codeine & morphine. Withdrawal has to be slow & steady. The fatigue lessened by about 6 months post treatment. I took an afternoon nap whenever possible. I felt back to myself at about 6 months post & was ready to go back to work part time. Eating took a long time to master again. I used my PEG from week 4 of treatment & had it removed at week 11 post treatment. 
Stick with this forum. You will get lots of support. 

Hi Shaun22, at 5 weeks post treatment is very early days, and your body has a lot of healing to do. Things do seem a while to get better in the early days of recovery. It very often seems like one step forward and two back, things will get better with time. Give yourself time to heal and get lots of rest. You will get there in the end. All the best. 

Regards Ray.

Thank you very much and the advice does help put things into perspective. I think I need to give myself time as I am an inpatient person.    

Thanks and that's what it is exactly like. I appear to have a good day then bam I am feeling physically and emotionally exhausted. Thanks for the thoughtful and hopeful posts. Cheers.     

I was the same. Very impatient. But the process has taught me patience. It is a long road ahead & your body has a lot of healing to do. Be kind & gentle with yourself. My consultant calls the journey ‘boom & bust’. You have good days full of energy so you get lots done then the next day or so you are depleted & feel like you have regressed. All normal. Recovery is not linear. You will get there, it just takes time. 

Hi Shaun Although it might not seem it to you 5  weeks is relatively early in recovery terms. I slowly reduced my oramorph and do codomol impersonally has no issues whilst doing it but as yiu say we are all different. Just a word on fatigue although I’m an advocate for exercise our tyoe of fatigue radiation is different you can’t fight it. I learnt to listen to my body and if I needed sleep I did it. I became an expert in the z20 minute power napTake a read of this article it’s written by a cancer cinsukatant from my cancer centre Leeds and print it out f give  to famiky and friends. Our treatment takes its toll on your body my oncologist said he would cure me but woukd take a year out of my life he did both.
. https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

hope this helps. A turning point is often atb3 month stage make sure you’re getting sufficient t nutrition and hydration that all helps 

Hazel x

Hi Hazel

Thanks very much and yes I am finding this out about fatigue. I am used to doing 100 miler road biking and went out last week and did 11 hilly mile and was absolutely spent. Thanks for the article and I will balance the fatigue with exercise and listen to my body more. I was lucky enough to get to Puerto Polynesia last may and I am hopeful of another trip prob next year as the lads usually go in May this year. Thanks for the advice and info. This forum really is superb and I am really grateful to the community support on hear. Thank you folk.  

Hi Shaun I’m also a keen cyclist ir was my saviour. We flew to murcia southern Spain  week 8 of recovery hubbys 60 th birthday I cycled 23 km in 3 weeks little rides. I’m now 4.5 years post radiotherapy and am back at my 100 km a day albeit slowly as I didn’t start until I was 57 ! Puerto pollensa is a great aim maybe you even this year but lower your expectations and enjoy the scenery as well. For a while it’s more about the scenery than the miles. 
hugs Hazel. Os you woujd be surprised in last 4.5 years  how  many other cyclists have presented with h p v. Oral cancers. Makes you think. 

Cheers Hazel and well done with the big miles that impressive. I was thinking possibly  May 2023 would potentially be doable but would perhaps miss mount Luc out, lol. All the best and happy journeys.    

Sounds good just listen to your body.it does know what’s best. Mont Luc will be there another year. Send photos.

Hazel