Life After Treatment

Hiya

I am only 3.5 months post treatment so cant speak about 12 months on, but i can tell you that it gets better than where your husband is at now

When i had finished treatment i was very poorly, i was coughing up blood, i slept most the day, i could barely speak and i took half an hour just to drink a glass of water..

But it gradually gets better and now i am free of pain and pain relief and back on solid food.

Hopefully the others can fill you in on the longer term, but i just wanted to reassure you if possible that the awfulness your husband is feeling right now will pass.

Trev

Hi I am Hazel aka radioactiveraz I am 28!month post treatment for tonsil cancer with several affected lymph nodes  . Yes recovery is challenging to say the least easier way for you to see my experiences is have a  look at my blog details below. 
I flew to Spain week 8 it was the hardest thing I I have ever done but it did me good in a strange way. Now I am living life to the fullest. Ok most days I have a 20 min nap to reset my body. But as for cancer it was a blip on my life is the way I look at it. Ok some days I have food issues but I don’t stress about them any more. Best advise I can give you is keep on top of hydration vital 2/3 liters of water a day snd in my case 2500 calories as our bodies are depleted during treatment . It took me 15 month to put my weight back on which now I am more or less back to normal weight although my body shape is different. 
take heart there’s enough of on here who have been there done it and now see the light at the tunnel . You’ve come to the right place any questions please ask am sure one of us will always get back to you m. Don’t give up hope it’s a winding road but it does straighten out with a few kinks along the way. 
Tuesday I had a face to face with  e n t consultant I am over 2 years and the chance of reoccurrence is rare  and all looking good. 
please keep in touch. Sorry you had such a bad start to treatment definitely shouldn’t have bern  told in that vest. 
hazel x

Hi hopingforthebest

Sorry you’ve found yourselves in this predicament but welcome to the community anyway. 
To answer one question the gold standard for follow up is every two months for the first two years with a PET/CT at 12-16 weeks to check treatment response, every three for the next one or two then six months for the fifth year. 
This is what most clinicians are aiming for but as you can imagine Covid is forcing some compromise. 
The universities of Birmingham and Bristol are just starting a survey to see how a more patient led approach might be put in place taking into account that most recurrence is symptomatic rather than being picked up in monitoring. This implementation is probably some time off

Recovery is slow in the first few weeks and I would think that until 12 weeks post radiotherapy your husband would be fairly low but eating improves and pain diminishes so that by that 12 weeks he should be feeling much better  

Improvements then generally pick up pace but can still be infuriatingly slow 

Depending in how your husband is feeling it would be expected that by a year he should be very much better with improvements continuing past two years. 
This has been my experience certainly as I come up to my second anniversary 

Im afraid we never know what’s round the corner as far as this cancer goes but they reckon that if you get to two years your chances are pretty good. HPV induced cancer has a better prognosis too but as oropharyngeal cancer patients we do run a lifelong higher risk of more cancer. 
I hope you can reach some sort of informed decision with your husbands MDT team. 
Have a look at my blog linked below which will give you a little idea of recovery. 
Please revisit if you need more help and the best of luck. 
Wishing you a happy Christmas 

Hi Hopingforthebest

I can't really add much to your previous replies - I agree with them all.

Your husband is probably at the very worst point just now.  The 2 weeks after treatment finishes are generally very difficult with pain, fatigue etc.

If it's possible to speak to the hospital team that carried out the treatment and ask them about follow up appts etc for the first year, especially in view of the current Covid situation, you may get a better idea of how often you would have to travel backwards and forwards.   I would say in approx 12 weeks he should be feeling much better than he does now.  Of course, it's very difficult to predict recovery times as we all heal at different rates but generally 12 weeks is a good marker.

All the best with your plans.

Linda x  

Hi Lindawt, Dani, Hazel and Trev, 

Thanks so much for responding to my post - sorry for my delay in replying, even a tiny Christmas with just the children and I has taken it out of me! It sounds like you have all come through this with remarkably positive attitudes & I am just hoping and praying that my husband will do this too. He is in the absolute horrors at the moment - very little sleep, can't speak, throwing up because of the mucas - just awful to watch. He's in too much pain to believe there could be a positive outcome to all this. But, you've all given me a good milestone of 12 weeks post treatment  

Best of luck with your own journeys and thanks again for being so helpful 

HFTB 

x

Hi no problem, we are all different but 12 weeks is a good yardstick.A word if warning most of us find eating meat can be problematic.  Silky  things  like people think mince is easy most of us find it’s difficult , to start with processed things can be easy one ready made lasagna as opposed to homemade .chicken breasts or try thigh  or leg easier.Potatoes  tend to be gloopy even now for me, but sweet potatoes fine. For me salads are hard , but give me a rare rib eye good.Yesterday I ate a full Christmas dinner. Gentle exercise is also good nothing too taxing, start 5 minutes then keep going a little further as radiation fatigue can be debilitating, but gentle exercise really helps. Come back if you have any more questions good luck life does on.

The rushing back to Dublin , the usual after care is to be seen every 6-8;weeks for first 6  months , in my case my pet ct scan  wasn’t unti week 18 after treatment with results a week after. Then 6 month to 12 still seen every 6-8 weeks 2 nd year and 3 rd year usually every 3  months ,with the last 2 years every 6 months ,You would need to find out if the health care system in Ireland would take your husband .You did say he had lost his voice will he need another op for that ? Again if so that would need factoring I’m.

Hazel x

Hi HFTB Sorry to hear of your husbands woes. What I have learned speaking to the nurses etc and people here is all the drugs are there to get you through this situation. All the Best Regards Min