Hi Vatch

We had some similar experiences to yourself. Long story (see branchial cyst thread!) short, we were told we should be thinking my husband had secondary cancer of the head/neck earlier this year due to a needle biopsy which came back as highly suspicious. It was only after they removed the cyst on his neck and had another 2 biopsies, that they decided it wasnt cancer after all. This took four months, pretty much. By the way, at the US the doc did in fact say it could be a tumour to us. Scariest moment of my life! This triggered the fna biopsy. We learnt they assume the worst until proven otherwise, which is great as its thorough but scary as heck to be on the receiving end,

Part of the process was that my husband also had an op under general to biopsy his tongue and larynx, he had also had his tonsils out as a kid tho. He had an endoscopy at the same time as this op. It left him a bit sore for a few days, but nothing more than that.

One big comfort that someone here gave me, was that the scan etc negatives are all good and if it does turn out to be bad news, it isnt likely to be advanced. Never google secondary, because its a whole different ball game when it comes to head and neck. 

We have an appointment with the consultant next Tuesday, it was 2 months ago they gave us the biopsy report and just wanted to keep an eye on him. His node under the jaw is still a bit swollen but it has gone down a lot so I hope they will be pleased with that. I would be fibbing if I said the fear has left me, but I think I am a bit superstitious!

Anyway, everyone has a story and some are more straightforward than others. It takes a while to know which way yours is going, try and take comfort in the things you know from here and I will be hoping for a big piece of luck coming your way.

All the best

Lisa xX

Hi Vatch,

Just read through your history again and your experiences really are similar to mine of a year ago. I went outside of the NHS to get the diagnosis faster - once it was diagnosed the NHS sprung into life and the treatment was generally excellent. I know that some people have a fairly smooth ride throughout and I do hope that you end up being one of these. I commute into London each day and due to the rough time that I had I was away from work for seven months - I was working from home for the last few weeks. I know that some people sail through with very few problems - I really hope that you are one of these.

It must be very difficult preparing for this and running a business at the same time. You would be wise to get whatever control measures prepared that are available to you ready and waiting - hopefully you won't need them but, to be honest, there is a fair chance that you will.

One thing to keep in mind - if your chemo turns out to be Cisplatin then make sure that they give you some anti-sickness medication to take home. You will be given some at hospital but this wears off after a few hours. I wasn't given any - they 'forgot'. Several hours later I was vomiting uncontrollably and had to be admitted to hospital. This got me off to a really bad start and I never really got rid of the extreme nausea for several months after that. Something to watch out for.

Good luck matey

Simon.

Hi guzzle

i hope your are feeling well today

Yep finf

ding nothing ....that concerns me in a way in that if they cant find the primary sight then how can they targetvthe radio therapy....and on top of that what happens with my checks after treatment?... if they cant find it now how will they find it then, or not, to say im clear

Who knows...im just taking it one step at a time

on the positive side ...I suppose I should be grateful that ive got no mass behind my nose so to speak

the roll-a-coaster rolls on

Hi deb

thanks for your helpful comments

god you were very fortunate to have all that time off and an employer so considerate...it must have eased the process from you

I wont have that luxury and I think its trying to plan my work around the complete unknown which is concerning me at the mo....but I am coming round to the thought that my health comes first and I will have to deal with everything else after that....but im still trying to find a way of making this work for everything and everyone......which I know aint possible

ever the optimist

Simon

hows things....on the mend I hope

thanks for the tips on the medication im expecting to encounter my treatment team in the next few weeks so I am armed with all the drug question thanks to you and your experiences....be them unfortunate but informative

but this all depends on ehat thry find from another sandpit dig down the back of my throat

it must say the nhs have been amazing...the quality speed sensitivity and compassion throught all level of staff my wife and I have encounted have been second to none....and to add to that I have private medical insurance and was advised not to use it as it would slow the process doyou can see fron the speed of things in the first week

and they do all this on crap pay sometimes long and difficult working condition and still have the ability to make you smile...it helps believe me

Hi Vatch

Fingers crossed for 02 June.  Do let us know how you get on.

With regard to private medical insurance a lady who was receiving treatment before I started mine was doing so via her medical insurance.  However if she felt unwell or had a high temperature the private company would not deal with it so she had to go the A&E.  She was always looked after very well bu A&E and was admitted to the cancer ward a couple of times and again was treated very well.  Unfortunately the same could not always be said of the private company and they did not keep her GP informed and up to date.  She seemed to fall between the cracks between all three and sadly passed away four weeks ago.  She was told almost at the end of her treatment that she would have been better of sticking with the NHS which she agreed with.  However she said she used private insurance so it would free up appointments/drugs for other sufferers.

Whilst there are times when we all moan about the NHS when something like cancer happens they are absolutely brilliant in most cases.

Take things as they come and once treatment has started do what you can and take rests.  Be careful not to overdo things.  I overdid things and was pretty much useless for the next couple of days so just try and do a little bit each day and if you feel tired then rest.

Best wishes.

Gill

Vatch, I agree with Simon that you would prob see same or similair oncologist/ent surgeon but maybe in a nicer room at a more convenient time. If it is provided through your firm check it is not a benefit in kind. My insurance allows NHS provision but pays £85 per day ad in patient / out patient which will cover my expenses. Also I am going to convalesce in a state of the art facility through my employer, probably in July. I think this will be good to fight fatigue and get back to work. I have just cycled 15 miles with a friend. I think my energy level are down by 20-25%. I can still jog 3 miles

I am usually in bed by 2100. Keeping active has helped me. As I understand it you have not been diagnosed? Have I got that wrong! Let me know. Id be happy to talk you through treatment if it comes to it.

Simon, good to hear from you mate. Hows the jaw? Are you and Irene up to joining pit Leeds posse when I recover? Id like to buy you a beer at some point!

Regards, Gary

Hi Guzzle,

The jaw is still problematic in that there is a further piece of bone growing through the gum below one of my back teeth. Not as painful as it once was though - when it's broken through the gun/tissue the pain subsides. I'll leave it until my next check up in a fortnight.

I do envy you still being able to run. My issue is not so much fatigue (although I get somewhat tired after about 4pm) but the reduced levels of saliva. Any exercise that causes me puff through my mouth causes me difficulty - I know I could carry water but I have to slurp it every few yards. The exercise bike is working well though.

I'd be up for a trip up north - it would be good to meet up and compare war-stories.

Good luck to you and good luck to Vatch.

Simon.

Simon, not ventured more than three miles since treatment and taking it slow/carrying water. Have you looked at camelpack backpacks? May be a solution. When I get through this I will consult you, nic, Irene regarding dates and hopefully spin up to Leeds to meet Access. It would be great if we could meet for lunch/dinner and maybe even a beer!

Hope your jaw heal mate, G