Hi Tonck

Hi this is Hazel I am now 21month post radiotherapy for tonsil cancer with several affected lymph nodes.What you are feeling is normal for the entire period of treatment you’ve been seen by yiur radiotherapy team and hopefully consultations have take;place. The wham yiu ringbthe bell walk out and are on your own.i likened  itbto being on an Apollo space mission and catapulted round the dark side of the moon tomrecover and recover I did .i have a blog don’t know if yiube read it it may help with links to other blogs including Ian aka Anchor 1707 who had eating isssues as well after treatment like I did .

Dry mouth is common , I rubbed biotene gel in at night and still use xyimelt lozeneges which I buy online .water is the key to recovery aim for 3 to 4 litres a day.Theres also an excellent article I like e Dr Peter Harvey a dr at my cancer center Leeds Called after treatment - what happens next   . It sums up the stages really well .feel free to send a friend request if you want or ask any questions will always try to help Hazel xx blog www.radioactiveraz.wordpress.com

Thank you Jenn for your kind words and referrals. My neck is continuing to improve, not my appetite though yet.

Thank you Hazel for your post and advice, I will definitely look at your blog as I’m sure it will contain lots of helpful info. 

It is difficult to see my oncologist atm due to corona virus, mostly telephone consultations is the most that can be done. 

Hi Tonchk,

Am sorry to hear of your situation right now and one I went through myself. I stuggled to eat for a while and "couldnt" rather than "wouldn" so my sympathies are with you.

It may not seem like it right now, but you do get through it and it does start to ease.

I started a thread on hear and we used to jest about the Ensure supplement drinks as a bushtucker trial.

I found most were awful but managed banana and strawberry and used to think of them as medicine, not food and necessary for fuel into body.

I also had a saying there is light at the end of the tunnel and there is for sure, I re assure you, but I undertsand exactly how you feel right now.

I truely believed that one of the best medicines was water and I used to drink as much as possible and am convinced was a true aid to speed recovery.

I too have a bolg that I kept from the get go and will show you my journey alog with timelines.

Let me  know if there is anything at all I can do to help

radiotherapythroat.home.blog

Kind regards

Ian

Hello,

sorry to interrupt this post  - I am newly diagnosed with a base of tongue carcinoma and involved lymph nodes. I think my longish road to get a dx (5 months) is quite common; long term sore throat, earache on and off lots of trips to GP and anitbitotics and now finally this which hasn't yet sunk in.

My treatment is chemoradition with no surgery at this point

I am feeling a bit (lot) rushed by the hospital to  and wonder if anyone has any tips around good reading about getting a PEG feeding tube fitting prior to chemoradiation. I had to ask 3 times for any info from hospital and it seems it is as with all interventions something you have to really fully weigh up.. I

I am 50 year old mum, with 3 school-age children  - sorry to just butt in too. Thanks for any pointers help etc Elle

Hi Elle

dirst if all we welcome to the club that nine if us really want to join this isn’t Hazel aka RadioactiveRaz I am niw 22 month post radiotherapy for tonsil cancer with several affected lymph nodes and now living my life almost as normal. Chemo radiation is tough but it’s doable as lots but if on here an vouch for. How far down the treatment plan are you ? Have you got  your stats yet ie I was T2N2Nm tumour size 2-4 cm 2 lymph node s  no metastasis and h p v 16+ .i didn’t have a peg but agreed to a n g tube if needed which I had week 4 of treatment for 6 weeks. I’ve heard in the current climate of covid 19 many hospitals are reluctant to put pegs in. I also understand you May not be able  people in with yiu so pen and paper and write everything down I have a blog with several links to other sites that may help 

www.radioactiveraz.wordpress.com

any questions just ask Hazel xx

Hi,

Thanks so much for a fast reply.

All my imaging is finished and thats highly suggestive of a tongue base tumor and the surgeon looked via nandescopy and tongue base thickened and ulerated. Now just waiting for final IHC. Weirdly the same hospital looked with a nandescope just before lock down and that doctor said all looked OK

Initaially they suspected and told me 90% chance I had lymphoma but at that stage I was more worried about the lymph node swelling. My throat has got much worse in a month.

I am worried most about the PEG its been presented as a sort of no brainer and very low risk but when I read anything about it , it seems that it can create its own issues and also worried about infection risk at the moment due to panedmic. I want to be sensible but be involved in decisions about my care.

I have been reading your blog already for a couple of weeks  - thanks. It always better (for me anyway) to read about treatments from a person who has done it and worked out some tips to get through it.... will be getting the toothpaste, toothbrushes and fans etc etc and I think a better nutribullet

Finally do you mind if I ask is there complete hair loss with this type of chemo as I understand its burst rather than weekly?

There is so much to think about  and some of the issues are that I started my treatment with one hospital for a month and have had to move due to Covid-19 reconfigurations.

thanks again...

Hi Ellie

i can’t say about then peg has I didn’t  have one but I know plenty who have had and any infections have been localised to the peg area and antibiotics soon clear it up. The benefits far outweigh the not having anything I can assure you if that. Ok some people don’t need anything and they are the lucky one s the majority if head and neck cancer patients by week 3 need help. You don’t realise until you can’t swallow and have dry mouth what it’s lime until it happens and having an artificial way of taking medication water and nutrition grasp the chance with both hands don’t even fret about what may go wrong. I have a lady who I am in direct contact with she’s spent the last 12 days I. Hospital begging for a n g tube to be fitted which she got in yesterday her last day of treatment. Not being a downer just passing in my observations .

Hair loss cisplatin doesn’t have hair loss issues ,but you will get a radiation hair loss line starts about week 2 my hair was long enough to cover it  , it stops when radiation finishes but after 6 month she it all looked like rats tails so had a decent cut my hair now is back to length it was and is in excellent condition.will be updating blog again in next week or so. Thank you for reading it .we are all different there’s no one trick dits  all. But yes the toothbrushes I still use even now ,duraphat toothpaste will be forever. Unfortunately I couldn’t stand the taste of anything done in my nutribullet butbthat May just have been me. Even now I struggle ,banana strawberries are fine most other fruits too dry. Best advise incan give is eat as much as yiu can I We next few weeks . 

the humidifier I found indispensable the nebuliser hospital,shouod give you in one. If yiu want to chat privately send me a friend request 

Keep in touch Hazel. You can do this if I can anyone can xx