My battle with cancer.

Hi jwl great news getting all clear. The side effects you have described, are what is to be expected, things will get better with time, you have to let your body heal itself. It does seem like one step forward at times, but you will get there in the end. Don't worry about opening up here we all know how you feel, come and have a rant and post as much as you want to. We are all here to help each other, so any qestions or worries just ask away.

Regards Ray.

Hello. I’m 1 year post treatment for tonsil & lymph node hpv 16 positive. I had surgery, then 6 weeks of chemoradiation. 6x chemo & 30 x radio. I also had a PEG fitted prior to treatment starting. Recovery was slow, painful & at times distressing. I have tinnitus that comes & goes. I’m having audio tests in June/July as I know my hearing is not as it was before the Cisplatin. The fatigue improved over the past few months & I’m having regular auricular acupuncture to stimulate saliva production. It has helped a lot & I no longer need copious drinks to eat or get through the day. I find sugar free gum, Xerostom pastilles & Peppersmith lemon mints all help too. .  At night I use Xylitol gel. 

jwl said:

I have been left with very little saliva if any most days and a very sensitive tongue wich I'm told may be permanent so I have to have a bottle of water each time I eat to help me eat, it has also given me tinnitus and thr radiotherapy has damaged one of the bones in my inner ear so hearing on one side is almost none existent, and I am still getting very tired if I do anything physical so I guess iv got to put up with the side effects unless they improve with time (I hope they do) 

Hi. I had all those but four years later I can say my saliva is pretty good, I can eat more or less anything without water. On bad days chewing gum keeps my mouth moist but I have few of those. I still use xylimelts at night. I have lost high end hearing in one ear and I have got used to the tinnitus. The tiredness was completely gone by six months. Improvements did continue up to about 3 years. 

PS like Blod acupuncture kick started my saliva. I have a couple of posts about it in my blog linked at the bottom of my post. 
sorry should be to jwl 

Thank you Ray for your kind words infill try and open up more and ask advice.

Regards 

John.

jwl said:

find it hard to open up

I was exactly the same. I’m quite a private person in the absence of people I know. I kept a low profile during treatment excluding even my only child who thankfully lives abroad. My husband and I managed on our own. 
But I’m here now hopefully to ease the passage of a few 

Just say anything you like here. Somebody here has done it felt the same. 
There is an excellent essay by a psychologist involved in cancer care before he retired. It might be useful. 
www.workingwithcancer.co.uk/.../After-the-treatment-finishes-then-what.pdf

Hi well done on scans in reality it’s still early days for yih although it won’t feel like it. I’m fast approaching 5 yesrs my saliva is pretty good now at night I still use 1/2 a xyimelt to help. I never ever thought I would get my saliva back. Sore tongue can still bug me I just know my triggers and mostly avoid them.For ne acidic  citric sone hard cheeses trigger my tongue issues. 
Auricular acupuncture kickstarted my saliva iff worth a try. 2 steps forward one step back is common. 
give this  a read it may help 

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

Hi jwl

Congratulations on getting through the treatment. It can be pretty brutal and takes a while to recover from. I did not have the same cancer as you but had some of the side effects you mentioned. I had 2 lots of radiotherapy on either side of my face at different times after ops but no chemo. My last lot of radiotherapy was in 2019.

I just wanted my life to get back to normal and it did take a while to adjust to some of the changes but the side effects did improve for me over time although some did not go away completely. Things have changed but I am now living my ‘new normal’ life quite happily.

  The dry mouth although still present improved to some degree but I have had 2 lots of radiotherapy so it is a bit worse than normal. I found Xylimelts at night worked well (you can buy them online) and when I was no longer able to use them for various reasons after another op I found Oral 7 or Biotene gel dabbed on my tongue helped along with sips of water.

The fatigue took longer to go away, several months and was the most debilitating but improved bit by bit and all of a sudden I got my energy back. I found a little bit of exercise in the form of walking helped but don’t push yourself too hard as you won’t be able to walk as far as you normally did initially so don’t beat yourself up about that.

I lost the hearing in my left ear but it was due to a fluid build up so my surgeon put a grommet in and that cleared it up so I was lucky there.

I have got used to my ‘new normal’ and am back to enjoying my life so hold in there it will happen it just takes time. Make a few small personal goals and work towards them as having some control over your life helps you get back on track.

I have found this forum so helpful and knowing there are so many people out there who have gone through something similar to me and hearing how they overcame things has really helped me.

Lyn

Hi Mel, I would just like to echo the comments made by the other community members. Congratulations on the clear PET scan and yes I also experienced many of the side effects you mention. Things should improve with time. Taste and texture of food was affected however I can now eat most things and enjoy them. I lost 13 kg during treatment and was very fatigued and have now regained about half of the weight and my energy levels are almost back to pretreatment. Stay with it!

All the best

- John