Hi Jimbo..

reading your post sounds like a mirror image of my husbands last January..he had a lump in his neck which grew very quick within a week..from the 3rd of jan 2018 he had his first appointment at a hospital in London and within 4 weeks he had all the tests and scans done and the 25th of Jan 2018 he was diagnosed with throat cancer..he also had to have his tonsils removed and a scraping of the back of his tongue done by TORS (transoral robotic surgery) they found the primary in his epiglottis and secondary was in his neck..he had stage 4 cancer..our life fell apart..he was 48 at the time and we’ve 4 daughters..He had the chemo and 6 weeks (everyday) of radiotherapy..the treatment was very hard and he lost a lot of weight because he couldn’t eat anything and ended up with a nasal feeding tube..(which really helped) and eventually when all the treatment finished within 4 weeks he managed to start eating again..I say porridge was a big help and he lived on this for a while but it helped him gain weight..on the 12th of September 2018 he got the all clear omg it was the best news ever..he has all his taste buds back and eats everything as normal..he went back to work last October full time..last year was the worst year of our lives but we did it..kicked cancers ***! His since had another PET scan and that came back clear too..next ones in June...

it was hard seeing him go though so much pain as he is a very strong man physically and mentally. Staying positive really helps..giving up was never an option  and I reminded him of this numerous of times..

i wish you all the best of luck and stay in touch on this page as we are all here to help you and your family through the next few months of your life..

Tina

Hi Jimbo.

Ive read that robotic surgery is very successful and has modernised the way these operations are carried out.

No we have different cancers diagnosed. Mine is OSCC whereas his was a rare cancer in parotid gland which isnt classed as a head and neck cancer but has the same treatment from the same team in maxface.

The treatment is very hard,but you just get through it. Says me who has still to face it :-(  I know I will flip if he mentions further biopsies on Thursday the palate one is causing me grief.

I feel the same as yourself it feels like an eternity everything seems so slow. My dentist was concerned that my Urgent Appointment took over 5 weeks Nov to Jan now into Feb and it just feels like forever.

I had a panoramic jaw xray as he said I may have to have teeth removed hmm after having them all crowned happy days eh.

Keep in touch and stop getting up at 3am!! x

Hi Jimbo

thank you for kind words I found writingbthe blog helped me it gave me some control over a situation I had no control over. Plus found it easier for friends and family’s rather than me constantly repeating my self. Please feel free to let your friends and family read it itbwikkmguve them an idea if what yiu will be going through. 

Cheat tips. From niw until treatment starts eat eat eat as much high  calorie stuff as you can yiu will loose weight don’t be afraid hold your back head up high be confident and take someone’s with yiu at all times if inkybtinwrute things down don’t be afraid to say whoa stop talk English to me in simple terms especially at your m d t meeting I had 9 people in mine , men make uo 90% of tinsil cancer so me being female was an added bonus to drs. 

I git a really good relationship with all my team from the beginning ok the dieticians are a pain one day she’s tokd me to try fish fingers  Chips  n beans as a snack. Umm excuse me love  what part  if u can’t eat don’t u get ! A poached egg wouldn’t go down never mind scratchy fish fingers !!!!

anythjng you want  ti ask ,just ask away there’s a few if us on her been there’s done it as they say. I am still in recovery mode in many ways treatment us the easy part but more if that later

take care yiu will get through it ,ive Just git back today from  apartment in Spain and bikes 152 km over a 15=Day period yesterday did 30 km 

hazel aka RadioactiveRaz 

Just out of curiosity, what is the general waiting time from original biopsy to diagnosis to treatment. I feel like this is going on forever and I'm having 1 of them days where I just want this roller coaster to stop for just a few hours

Thank you all so much for your replies, they do help and all your kind words are very comforting. 

Hi in my case dr 14 May ent 29 May on 14 day pathway  biopsy 19 June first oncologist 25 June treatment start 16 July finished 31 August.  If u count days from 29 May  16 July it’s just in the n h s guideline of 63 days which apparently is the max time before the trust gets penalty points !,

hazel

Hi Jimbo

Sorry you have joined our club but there are a few of us at various stages for throat cancer treatment and plenty of support and help for you along the way.

In my experience biopsy to treatment was around 2 half nearly 3 months or so. There can be a slight delay depending on whether any pre treatment dental work is required as the jaw and gums need time to settle.

I too have been keeping a blog and have a thread on here which logs my journey each week from the get go and I update every Friday.
Have a read through if you get a chance and you will be able to share my experience as well.
Quite a good thread with lots of contributions from others as well as plenty tips and hope it helps.
It is warts and all and journey is not an easy one, particularly recovery period, but we are all different and with the high success rate of cure there is light at the end of the tunnel.

kind regards

Ian

H 

please don’t be scared the word says HPV 16+ or 18 + in this context are good as they point to your cancer being virus born as opposed to smoking or drinking it increases the chances of all clear by a good percentage.i know how you are feeling numb scared confused why me .

i will read your thread 

But the onky symptoms I had was an enlarged lymph node in my collar  bone which I thought was a pull as I had been cycling over 1100 km in Spain .

i have a blog www.radioactiveraz.wordpress.com where indetail everything.

anything you want to know justbask  the waiting is  the worst  once treatment starts things fall in to place. Only advise  ibcan give for now is eat as much as yiu can even though you won’t want to it will help as weight  loss will occur .

regards

h 

sorry, i just noticed that my previous thread that I forgot to put link to my blog for anyone who wants to have a read

radiotherapythroat.home.blog

regards

Ian

I just put friend requests in for both Jimbo and Clara, it looks like we are all at the same stage and with similar conditions, maybe we can go through this together and hopefully help each other out and perhaps exchange idea’s that work on our side effects. I don’t know about you guys but I am so so scared about what lies ahead but it is what it is and we have no choice but to go through with it.

I hope we can go through this and hopefully support each other on the way.  I recomend reading both Hazel and Anchor's blogs...