Hi Jenn

Thanks for your kind words, I am happy to join any chat groups or calls, it feels at the moment that my experiences could help others and struggling to find avenues to do that.  I have also offered my services to the clinic where treated to also meet others. They have said if anyone else gets similar they would contact me and get me to come in and talk to them. I feel that I could really help post treatment as that is when you do become more isolated from seeing the specialists day to day and find yourself more on your own.

For me I set msyelf a challenge to get my fitness back, pre-cancer I could run 10k in morning and do a gym session evening without any issue. When I first started training I could not even run 1k or do any more than 5 press ups.

I did not really have an appeptite for months, only recently that has returned to anything like normal levels,  so focused on training and mentally I knew I needed food to for this, so whereas before I got pleasure from both, food became functional to support my training.

It would be great to be a guide for others going through this journey, you can tell friends/family about losing taste, but unless you have been through it no-one else can really understand. A few people at work got COVID and lost tatse, then they understood a bit more about what this treament can do to you on a more permanent basis.  

For me my fitness challenge I set myself,  helped me stay mentally positive, there were some darker days,  but I tried not to let them affect me too much overall and I would love to help others,

Phil  

Thanks Phil

It's always helpful to know when community members are happy to chat with others about their story :happy:

Hi Phil

Did you have any surgery ?

Hi

No, I did not, it was mentioned, but the consultant said I would still need to have 6 weeks of Chemo and RT , whether I had surgery or not. so there was no point in having surgery, they hoped the Chemo and RT would I suppose kill of the cancer without that need. 

Thanks

Phil 

Hi

I was told by my maxfax consultant the exact opposite that best pratice was surgery followed by radiotherapy / chemotherapy. Pathology on my removed lymph nodes detected no leakage  so no chemotherapy was required in my case only radiotherapy. 

Glad your ok my issues were a little more complex with the surgery as well.

I'm 13 months on since end of radiotherapy and am fine a little fat if anything.

Thanks for posting

Hi

Really glad you feel fine, it is not a pleasant treatement and takes a while to recover, I had a smaller dose of Chemo, so not too many side effects with that during treatment, the RT was the worst and quite brutal as I had some really bad side effects, during treatment, but all in the past now and I probably got the best outcome possible overall so far. 

Thanks

Phil 

Hi Phil, Great to hear your wonderful positive news! Well Done.  I would like to ask.....had you any speech difficulty or swelling around your neck. Mary

Hi Mary

My voice was very croaky, not strong and has gradually improved, if I talked for even a few minutes my mouth would dry up and I needed to of course constantly drink water and still do, althought it has impoved greatly.

My neck was ok, although when I tried to go for a run, my head felt really heavy and stiff around the neck area as though got whiplash. I also gagged when trying to run at times, due probaly the inflammation and swelling from the treatment. 

I was very meticulous with my swallowing excercises and also I didnt like all the soft foods they were telling me to start eating, so I started to try and eat bread, cheese on toast and although this was a bit painful and hard to swallow, I was told by the consultant, I almost did my own rehab with the muscles related to swallowing. 

Are you post treament and how long since your teratment finished. Everyone journey is different, and side effects are never the same.

Phil 

Post Treatment 16 wks. Was doing great and trying new food but had to take a step back. I may have been doing too much with introducing food too fast. As I have to exercise my muscles for speech, even though my muscles are quite good. I have alot of exercises to do, which is quite tiring..... slow and steady but great to hear your news. 

I hope you will treat yourself to something nice.

Mary