Have been to see consultants today, CT scan has not revealed the primary! They now want a PET scan doing, they said there was 2 tiny (5mm) nodules in the lung and want to make sure they are nothing sinister. They did a laryngoscopy again and on the TV screen the tonsil did look large and had 2 ulcers on it so this seemed to persuade them that the tonsil is the primary. Now its a waiting game for the PET scan and then if operation will go ahead as planned for the 18th January! This is so frustrating and worrying, nothing seems to be moving fast enough!!
Thanks for all your support, just wanted to keep you up to date!!
Love Lynne

Hello there Lynne, I missed your previous posting, must have been christmas and all that that entails. I have to tell you I never thought after my husband was Dx last March that we would be here together for christmas. Surgery was deemed to be too radical as the consultant explained he would have had to have had his voice box and the whole of his tongue removed. As a result Bill had 3 lots of 24/5 chemo and 20 lots of r/t. We were given the all clear on 17th December, Christmas presents don't come any better. Here we are at the beginning of a new year and looking forward to many more.

Stay positive and focused and although it is easy to say, don't let the waiting get to you.

Hello Lynne,

It's good that they are being so thorough with all of the tests. Treatment will start soon enough. We were exactly the same and just wanted the treatment to start straightaway to kill the cancer. It's frustrating that there seems to be lots of planning beforehand. Have confidence that they know what they're doing.

Good luck Brian and well done Bill!

Lorraine

Congratulations to you and your husband Bill, he's done so well! Brian is very positive, but I'm a nurse and sometimes a little knowledge is not a good thing!! Thanks Lorraine, I never thought I was an impatient person until this started, I think once the treatment starts I will have something to focus on. Your support means so much,
Thank you, Lynne

Hi lynne

i am a nurse too, and believe me knowledge is not so great in these situations because you understand the techno speak and read between the lines,and always anticipate the worst.The dx round the christmas holiday period is the pits because the appointments are delayed as are the results,and time drags by so slowly.Still everyone should be back to normal on monday and things should start moving quicker.Hope it is soon

love liz

Well we've managed to get an appointment for Monday for the PET scan, had to go private or wait 2 wks, amazing how suddenly there had been a cancellation we could have.After the scan we are back at the hospital on Thursday for results and if just tonsil/lymph nodes then he will have operation on Friday!
After Brian seeming so positive he now seems to be going through the anger stage, last night when I asked him if he wanted to do something his answer was 'its alright for you, you're not sat here dying', I was shocked and upset and didn't know really how to respond, except to say 'don't start giving up at the 1st hurdle!'. His moods seem to change by the hour, no doubt this will happen alot over the next few months.
Anyway feel better just by doing this,
Thanks everyone!
Love Lynne

Hi Lynne,

That all seems to be moving pretty quick now! It might help Brian if you can let him know about some of the success stories on here and how well people have done. When someone is diagnosed with cancer just the mention of the word makes you think 'well that's it then'. When in actual fact people do survive. Brian must be very frightened and you are in for a rough ride but you can get through it. Please take strength from everyone on here.

Keep posting Lynne, we're here for you both.

Lorraine

Hi Lynne
All the waiting during the searching/planning phase post diagnosis is absolute torture but it sounds as though the ball is really about to start rolling for you. Once it all begins there will be hurdles to get over (you won't be up to jumping them ~ get over them any way you can!)and you will have more tangible things to concentrate on. Honestly it will be no time at all before you are looking back wondering where the time has gone.
In saying all of that though, times are going to get tough. This website is a lifesaver so be sure to make use of it. Please be sure you have a good support group around you. Being the carer is a pretty tough role, Lynne. Apart from being there to support your husband you will have a million feelings of your own to deal with and they will be all over the place. In the thick of it all, when Trevor was sleeping (unconscious, more like) for 20 hours a day, loneliness (on top of the heartache) was a huge constant for me and you don't feel inclined to say anything because afterall, you aren't the one 'going through it all'.
As shocking as it was for you to hear your husband say he was dying, basically ~ it was good that he could vocalise his feelings and while it sounds negative, maybe he just didn't know how to say that he is afraid that may be the case. With a cancer diagnosis you sort of step into an alternative reality. You will understand what I mean as you move down the road with this.
Everyone on the site will have you in their thoughts or prayers, Lynne. Try to take comfort from that and know that you will always have someone at hand if you need advice, to let off steam or to simply get through a moment.
Chin up.
Lots of love from Down Under
Deborah

Lynne, Bully him! great that you got the appointment will be thinking of you on Monday.

Thanks for your replies. I tell Brian about the people I talk to on here, so he is aware of the successes there has been. Just in limbo for next 2 days until we get confirmation of results. Spoke to our GP who said he is more concerned about the nodules in the lung so praying they turn out to be nothing. Feel sick in the stomach all the time just thinking about going for the results, playing different scenario's over in my mind!! Any way will let you know how we get on Thursday, fingers crossed!
Love Lynne