Well done Al, you really have taken this in your stride so well. And it is fabulous news that the PET scan was clear (wahoo) 

You didnt escape the teeth xray ,I was starting to question why i had to have one done but as my sis is a dental hygenist she reassured me it was necessary to oust any dodgy teeth now so no chance of dental work bring needed in  the foreseable years .

Yep ,we are peg buddies lol 

As for me , l am still in limbo waiting on my full biospy  results so I still feel tethered to too many unknowns 

Enjoy your meal and get as many in as you can, I intend to , when mouth has healed, again

Cheers

Hi Jo and Sue,

Poor Sue as if you didn't have enough on your plate, glad to hear the antibiotics are starting to kick in though. My IBS has flared up in the last few weeks probs due to stress (I describe it as the Alien under my right ribcage)...I started to panic that the cancer had spread there and would show up on the scan......thankfully nothing. I hope you make a speedy recovery and crossing everything for the 26th.

Like I said earlier I was 100% prepared for hearing the bad news because my surgeon had been so up front from the get go but the bad news was offset by hearing that it hasn't spread and it was fascinating to see the PET scan up on the screen and be talked thru it.

I had 2 MacMillan nurses in the room and after the surgeon had finished we had a good 20 min chat in which they said they would be there for me thru this whole process, they gave me booklets and numbers to call and said I can contact them any time I want. I have to say I am so impressed with my care so far.

The surgeon will arrange for me to visit the team where I will be having my treatment (probs next week) and he said treatment usually starts 2/3 weeks after meeting them.

I know it I still have a long way to go but I feel so positive and upbeat now and can't wait to get started (I may regret saying that :laugh:)

Peg buddy Jo, also crossing everything for you and hoping some good results come back

thinking of both of you

Al

xx

Hi guys,

Hope you are both still healing...

Its all happening so quickly my end. I had a call yesterday to go and see the hopsital dentist for an X ray and a consult on Tuesday (I'm hoping the tumour is far enough away from my teeth that I don't have to lose any). Also had a call from hospital booking me in for my stomach peg on the 14th.......and I also received my formal letter from my surgeon stating what the tumour is and what stage its at....its T2/3 N1 SCC p16 which I think means it is between 2 and 3 cm and the N1 means it has spread to the nearby lymph node....and its a Squamous Cell Carcinoma HPV Positive.

So there it is in black and white......

Enjoy what's left of the weekend I'm off out with family tonight to see a show at our local theatre.

Al

xx

Hi Al

I am healing slowly - just about managing some solid food and  I no longer look like a character out of wallace and gromit lol - jeez did my jaw swell up 

You certainly are full steam ahead - I had two appointmnets in the post yesterday - one for Oncology Tuesday and one for 14th at ENT again , neither appts state what these dates are for , feel like i am blindfolded at the mo .. and wading in treacle 

re your teeth , they are checking for weak teeth that may require invasive dental work in the next few years to come - apparantlly after radiotherpay to the mouth blood supply to the jaw bone can be a bit knackered meaning any work on your jaw would not heal and cause something quite horrid , Osteo summit or other .. radiotherapy will kinda affect the whole mouth not just your tongue  hence teeth get checked via xray 

Hope you have a spiffing time at the theatre  tonight   

Jo

x

Hi Jo,

Had a fantastic time at the theatre last night, saw a musical/play about The Dubliners (I'm half Irish so was brought up on diddly dum music as I call it)....I'm hoarse from singing and probably should have just hummed along :laugh:

I hope you get all this uncertainty out of the way quickly and get a plan in place going forward and I hope the pain is still on the wain.

Thanks for the info about the teeth btw....I think/hope my lower jaw is ok, fingers crossed they will agree.

Sue I hope your bowel problems are still on the mend?

And to our new member 'S' I hope you are coping ok?

Thinking of all of u

Al

x

Well I emailed my  CNS nurse and she advised the appt I have on the 13th is to meet at the radiology centre , meet the team who will tell me what to expect, a dietician and speech therapist  too - its amazing how much better that makes me feel ..a little progress and movement 

I know you have your date for PEG fitting , did they say you would be in and out the same day , i.e day surgery or admitted for one night - the info booklet I was given said a nights stay needed as will need training on how to use it  *shrugs  not sure how up to date that booklet is , so wondered if you had been told duration etc

Glad you had a jolly good time yesta   ️
 

Hugs to Sue too ! 

x 

Hi Jo yes I'm on here as well if yiu need anything 
Hazel 

Hi Mac,

If you are still waiting for your results, like I was I contacted  Patient Advice and Liaison Service (PALS)

via email. I waited 4 weeks after my biopsy. When I emailed PALS I had ENT call me the next day with the results which for me was cancer in my right tonsil base of tongue. This was 3 weeks ago, since then I have had CT scan and PET-CT scans and mask made. It is a scary time, my treatment starts on Easter Monday 6 weeks of Radiotherapy Mon- Fri and 6 course of Chemo.

If you are on FB search for a group called HPV survivors there are lost of people that will support you and give advice. 

Hope this helps.

well well well Hazel, you do get about dont you . hahaha 

Lovely to see you here , you are so proactive and  such great support to many people  

A small update. 

I received a call from my CNS Nurse, Sarah, this morning telling me i did not need to come for todays appointment as the pathalogy report was back and the consultants advised surgery was not necessary and I will continue on the path of radiotherapy and Chemo ..  

I also mentioned I had not yet had a date for my PET scan and she advised she would chase this but that I shouldnt worry as they really did not expect to find anything and it was simply a belts and braces procedure. 

Felt so good to actually receive some postivie news today .. my first buzz of real happiness since February .. 

Jo

x