Hi Gameboy. Thank you for your kind comments. Onwards and upwards from here xx

Hi Janeagain

thsnknyiu very much for your alternative route being posted like Ian says you aren’t s fraudster at all especially says you’ve already done  the chemo radiation route in your 20 s an alternative route was the way to go. I originally was offered a possible route similar to yours but at my pet ct scan just before final decision the cellschad migrated to a lymph node be my spine at the top only s baby cell but nevertheless operating was not an option hence my chosen route. 

Yours makes for interesting reading and wish you well on the road to recovery baby steps all the way

take care keep in touch

hazel xx 

Hi Dian. Welcome to our small and exclusive club that no one really wants to be in. i remember eeek one well the best way I could describe the feeling was like bees buzzing st the back of my throat.

Therr us light at the end of the  tunnel just look on here to see it can be rocky but I am s wimp and positive mental attitude got me there along with a few tests and lots of laughs especially with my new found cancer buddies v

dont feel alone pop by when ever one of us will get back to you with some words of wisdom. Just remember we are all diffetrntvwhst one of us gets doesn’t mean your hubby will get. What’s is numbers do you know I was T2N2NM0 h p v 16 + 

krtp in touch 

hazel x

Hi Diann

Welcome to the thread and glad he is doing well.
Plenty of info here and on our blogs to give you some insight on what potentially to expect and when.

As Hazel says, plenty helpful folk around here to help and support no matter the issue.

Onwards & Upwards
Ian

Hi Jane

I don't know if you are medically trained but you have quite a grasp on the subject and pehaps able to question or articulate better with the medical team around not only the diagnosis but the treatment plan.
I can only speak for myself but I wasnt expecting the disgnosis when I did so I had no real terms of reference and just kinda accepted all that I was told on the basis, they are the experts.
I had no knowledge of the subject and to be perfectly honest, I cant really expect to be an expert ,even now, just because I was diagnosed, treated and have all the side effects that come with recovery.
One of the things with hindsight was the lack of understanding, particulairly when it came to side effects. I have had particular issues with appetite and fatigue and it took me to go back to my team around 6 weeks or so ago to get some resolution for appetite. Fatigue is still ongoing but getting a little better. Again, while the advice given re appetite helped it was only when I went back after such weight loss that they explained a little more re good calories/ wasted calories and body looking for energy etc. Again I had to and still do follow all their advice as I have no real reason not to, nor am I in any positon to question much and this is from treatment stopping last Novemeber.
Lets face it, while we might be a little more informed after treatment and recovery we are in the main prertty much all amateurs at this and we can only really advise and support others based on our own experiences.As far as I know, none are medically qualified in this area of expertise. Having this thread has helped as many have come together and its been great to pick up on little tips that otherwise we might not have known and in the main no one person has all the answers for all the issues so thats why I feel this thread community has helped one another on a collective basis.

The fact that you have expieriened nothing unexpected apart from pain management is great, but I still feel that it was a brave decision to make yourself . Again if I'm honest I would do the same again and let the professional medical staff decide what was best for me and rely on their expetise and treatment plan. I cant say that I have had nothing that was unexpected as I have had many, particularily with side effects and had to kind of wing ot between suffering, using this thread and intermitant appointments with my medical team.
Pain management with this can be subjective as some try and do without, some try minimal, some in the middle and some at the end of scale with quite high doses of various pain management medications, mainly morphine in the  main.
I woudnt say I was in much pain as as soon as it crept in as an issue my medical team were right onto to it and upped dosage accordingly so perhaps best described as discomfort rather than severve pain. In some funny way my pain was not managed so well when I had my tonsil out and recovry from that and same with teeth extraction, That was a major ouch !! and really was in some pain with that.
I agree with you totally whe you say when you look back and wonder how we managed but I guess for me I tried to keep a positive attitude and kinda accepted whatever was thrown my way. On the basis that I had no option and they were trying to save my life so mentally I went into whatever it takes mode. We are all different as we keep saying on here so whatever works for the individual.

Really interesting reading your posts and quite an insight. This only adds t o the information held on here and can only be a good thing as usually somebody fits into to someone else situation and mirroring timelines with side effects so thank you so much for your input and contribution.

One of the best pots I have seen and I do hope you keep posting with updates and again please jump in if you feel you can offer further help in the thread in anyway.

Onwards & Upwards
Ian

It’s interesting that you say hpv is aggressive Jane, I wasn’t told that but suspected it because suddenly one day I could feel something at the back of my throat when swallowing but the previous day there was nothing which made me think the tumour was growing fast, it’s true that you learn more on here than from the docs but suppose we are on a continuous conveyor belt of patients and they can only tell us so much in a short session. Plus I got the feeling I was being told just enough to keep me satisfied.

Dave

Hi Dave

My understanding is that HPV cancer grows fast but in a very predictable fashion. As radiotherapy targets rapidly dividing cells this level of activity is good for treatment and the patterns of spread are predictable so regions it is likely to migrate to can be included. It seems to spread like a bramble or strawberry plant by creeping across the tissues or satelliting other spots nearby or via the lymphatic system where is is captured in the closest nodes.

Ian - I have a tenuous medical background having worked as a physio for many years and now on Intensive care but doing admin. It just means I find I can be exposed to terminology/biolody/procedures and have a vague ability to understand them.

It was the same for me. One day there was nothing and the next there was a sizeable lump rubbing on my throat which I watched change seemingly before my very eyes.

I am paying privately to get my son vaccinated (my daughter was included in the National programme). It is not currently available on the NHS until this autumn and then only for 13 year old males with no backdating.... the feeling is that if erradicated from girls then it will fizzle out in boys. The exception apparently is for men who have sex with men in which case they can obtain immunisation too. Of course as europe is not united in its policies this does not work for boys who meet a spanish girl on their holidays (Spain has not vaccinated all girls) and sleep with her so Im taking no chances.

x

Hi Dian . Welcome . You are just starting out this journey while my husband has just finished . You will get plenty of help here from all the lovely people . I hope it all goes well for your partner . X x x 

Hi Jane

I think this was previously mentioned by Lemonice on here but from what you are saying, there seems to be some correlation with throat cancer and sex, or at least potentially a factor.
Not trying to be graphic over a sexual discussion but sex is quite a popular phenomenon by both male and female and has been since the dark ages, so I'm not understanding the correlation and if so, what are there not far more casesof throat cancer.. Or am i misreading and there is no correlation? and why would it be eradicated from girls if boys treated.
I have also not seen much publicity around any vacccinne being available for all 13 year old males.

Again, all interesting stuff and some of the science around this is really quite fascinating.

ian