Post treatment fears

LVR said:

Has anyone else experienced these side effects at 12 weeks post treatment? Are my expectations of progress too high?  I’ve just had a PET CT scan and am terrified of getting the results next week, which isn’t helping. 

Hi LVR 

I think what you describe is exactly what all of us go through especially as the medical teams are prone to say we get better after two weeks post treatment. What a joke! Everybody is different and we all take our time to heal so remember there is no schedule, only your own. I wasn’t happy with myself for six months and a year was a big milestone in being as near to normal as I could hope. Even then, though the majority of improvements occur in that period they continue well past that.

Scanxiety is a real thing but you should hold onto the fact that this cancer responds really well to CRT and early failure is rare. 
Have a read of Dr Peter Harvey’s essay on recovering from cancer. It’s a real eye opener 

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

Hi,LVR  it is still early days for you, eating soft foods shows you are doing quite well. Recovery can be a long-drawn-out thing, and some recover quicker than others, so there is no set time, it's a marathon not a sprint. You will get there, your body needs the time to heal itself.

Ray.

Hi LVR

T2N1M0 HPV16+ tonsil cancer...Chemoradio finished June 2023

Effects of Chemoradio do take a while to lessen, I did not  really start improving until August last year, PEG feeding tube came out in September after clear PET/CT scan ...and yes we all have an anxious 2/3 week wait....in October things improved rapidly...went to the Canaries with my wife....taste and appetite improved....still improving...I still have a dry mouth ...helped with regular hydration and Biotene gel...still trial and error with food and drink ... there is definitely light at the end of the tunnel for us....it is a tough treatment but well worth it....

Peter

Hi like Dani says we all ready different,y yiure on track it took me a good 6 month of eating food is fuel I got no pleasure from eating soft mush mostly. My blog below might give yiu some indications also read this article it’s true in so many ways. 
try high calorie smoothies using nut butters extra calories home made soups extra cream etc poached. Eggs were my saving grace plus slow cooked lamb in slow cooker   Chicken breast  is still difficult legs much easier. 

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

Hazel 

Thank you so much for replying so quickly. It’s so helpful to be in touch with others who been, or who are going through, the same things, even if they vary in their timings and intensity. I will definitely find the time to read the article. Thank you again for helping me feel that I’m not out of the ordinary! X

Thank you for reassuring me that I‘m doing quite well. Some things I’ve read suggest that my throat should be nearly back to normal, others that it can take a year or more. I guess both are true for some people, but it does seem that a longer recovery is more normal! 

Thank you - that’s encouraging that there’s light at the end of the tunnel. I think I’ll know when I’m properly on the mend when I can enjoy fish and chips on the beach. I think wine with it might be a wish too ffar just now! X

Thank you Hazel. Those tips are very helpful and I’ll definitely be reading your blog and that article.  

Hi LVR

I really enjoy Guinness 0.0.... have been on it since last September....one of the few things I could tolerate to start with...has a few calories to help with keeping weight steady... enjoying chippy food for a while now...eating slowly with plenty of liquid to wash it down.......but it has been quite a long and trying journey.

Take Care

Peter

Hello LVR. You’re doing better than you think. You’ve been through the worst and every week it gets a bit easier. Keep a diary and you’ll really see just how much you are improving by the day. 

your mental health is so important. I would encourage everyone especially those living along, to get therapy. I was in daily touch with a therapist and still am.  To me that’s as important to your recovery as meds are