I feel disloyal posting this, but I'm getting braver!
:soapbox: why oh why don't resources like this board get brought to the attention of patients and carers? My husband and I (never thought I'd say that!) are reeling from latest developments (still waiting on a second opinion following path lab reports leading to advice of reoccurence of cancerous tissue), to the extent that I'm considering taking up the offer of seeing a clinical psychologist that the head and neck nurse made on Tuesday. Can't sleep, overreact to small events in the workplace, panic attacks, binge eating and drinking... I'm a gibbering wreck, maybe I'd have been like this anyway, but this board is a recent discovery for me, and I'm sure that if it'd been a resource that I had made use of earlier then that would have made a difference - if offers practical and emotional support at - what I assume - is a relatively low cost to the NHS?
my suggestion is that you get a 'goody' :yikes: bag when you go to head and neck for certain things, because its difficult to comprehend and/or accept certain concepts, an information pack would be useful, that patients and carers could refer to when needed
well, I think that's quashed my night demons, so I'll try and get some rest. Just my two penn'orth :twocents:
thank you for this board.

I agree with you that it should be more avaiable.

I searced the net and know EVERTHING what was going to and might happen afterwards.
Its ALL come true.
I think yes see councilor but thye aare only there to listen!
Its the old case me think have not been there had that!
Mine although sympathetic ( dont need ) does not really know what to say as he knew me before and what I have become now just astonishes him.
Specially keep having the Biopsy scares hes frightened to phone me in case something else has gone wrong
I suggest you look on the web but beware it can be frightning some people do not want to know!
Hope thats helps.
My thought are with you and husband.

Paul

Hi Jenbee and welcome to our world

First up, I don't understand what you feel guilty about. Seeking to share your problems and fears?

That's what we're all doing on this site. Luckily we've got a fantastic mentor in Dr. Joshi. Where he finds the time to give all the advice and support he give I just do not know.

I'm not 100% sure whether it's you or your husband who's the patient, but I'm guessing it's you.

You're having to face up to what we all fear, i.e. a recurrence.

There's nothing I can really say, other than in your situation I'd be (to be crude) shit scared.

How people find the courage to deal with such a situation I just do not know.

Have you read any of the """survibors""" stories? There are people who have dealt with all manner of horrors, and yet seem to manage to be cheerful and optomistic.

You ask why resources such as this board aren't brought to the attention of head and neck patients and carers. Please bear in mind that not all patients and carers have access to the Internet. Indeed some don't even want to know about the internet. As Paul says, beware of the """net""". Even amongst cancer patients, or people who claim to be cancer patients, there are some pretty weird, if not sick, people out there.

However, given how distraught you sound maybe a pyschologist might be able to help. By belief though is the pyschologist can only guide you, any relief and resolution has to come from within you. And that takes real courage and strength of will. You're posting and openess shows that you have both those attributes.

Might sound corny, but my prayers are with you.

Oh yes - and keep posting

thank you for your helpful comments.

just to clarify, its my husband that's the patient, there's a bit about our story thus far on the introductions part of the board. we've been to clinic today, the cancer has reoccurred and we're waiting to see someone who can fully present the pros and cons of chemotherapy before deciding whether to take that step.

I had reservations about posting because the site
hadn't been brought to my attention by our treatment team, so it seemed that it hasn't their 'seal of approval'. I agree that its perhaps not such a good idea to draw attention to internet resources to all patients as a matter of course, maybe there could be a list of affiliates on the site for those that did come across it?
but maybe that would just freak out those being treated by someone that wasn't listed.. I don't know.

thanks again

HI, I hope you and your Husband come to the desision about treatment.
NOBODY at the Cancer Unit or Raditherapy heard of this site I came across it by accident and since I was born in Bradford attracted my attention.
Now all the team at the Max Fax have a peek!!!
I thnk more people visit the site the better but they MUST contribute to help us as well as themselves me thinks.
Only MY opinion

Paul

Hi jenbee

The Affiliates Page shows the organisations that have linked to the RDOC/MouthCancerAwareness website. You will find some comfort in that. The website also subscribes to the Honcode Principles .

I have tried to get this resource mentioned in the NICE guidelines being produced for Head and Neck cancer patients. Unfortunately the reply has been : """Regrettably, NICE does not permit us to refer to particular websites where people can get information - they insist we quote only the NHS direct website, which we realise is not comprehensive. But our hands are tied on this. """ :banghead:

The RDOC website is currently No 1 on the Google search engine for 'mouth cancer' and 'throat cancer uk' amongst some of the word searches used. Up to 29 January 2004 am, the website has received 401,049 hits (18,366 visits from 12,758 sites) in the last 28 days, averaging 633 visits each day. This has been achieved in two years with no official support. So even though this UK website was created by an NHS consultant, it can't be mentioned as a resource .

Perhaps patients and carers should all lobby NICE to have some commonsense about this issue .

Whatever happens, rest assured that this website will maintain its standards and keep the patient's needs at the centre of its plans.

Best wishes

Vinod :coffee: :coffee: izza: