Hello Paul

Have read quite a lot about you. How awful that you had to do all that treatment on your own, I cannot even begin to imagine what that must have been like for you. We will manage the travelling somehow and ask the hospital if they can help. The appointment is at 11 this morning, I am feeling quite anxious about it - suppose because they will tell us what the histology report says. The good thing though has been this forum. I feel that maybe we are ahead of the game and maybe able to make some fairly informed choices. Also Paul has an idea of what lies ahead so perhaps not such a shock. Will let you all know how we get on later.

Joan

Hi Joan,

Whats the news?

Love Chloex

Hi Chloex,

Not sure how it went really. After Paul's operation we understood that both the primary tumour and the secondary had been removed. Turned out the secondary has been removed but the primary was just biopsied. It was our understanding that both tumours had been removed. That came as a shock to us all as he had done so well with the neck dissection, can raise his arm above his head and the surgeon didn't have to remove a nerve or as much muscle in his shoulder as he first thought he would. Sandra has since phoned the cancer nurse for clarification and she said that perhaps the way they termed it was a bit misleading but nothing has changed - still trying to get head round it. Cancer nurse said he has an orapharynx (? spelling)tumour - staging is T2N3. To treat with surgery would mean he would lose his tongue - presumably it would have to be re-constructed. Wasn't expecting anything like that so wasn't really prepared after all. Thought the radio and chemotherapy was a mopping up excercise so bit shocked. The better bit of news is that providing kidney tests are ok (apparently there may be a problem if kidney function isn't normal) they will refer him to Barts for IMRT. Oncologist said with IMRT some people don't often need a peg but they prefer to fit one so that it is there just in case. Await the next round now - what a minefield.

Thanks for caring - completely lost it when I got home and its not even me its happening to.

Joan

I'm really sorry to hear that Joan.It sounds like rough times ahead. Remeber to stay positive coz thats half the battle.

Thinking of you all.

Love Chloex

Hi Chloex,

Had you been out enjoying yourself the other night (2.01 a.m) or couldn't you sleep. Hope it was the former.

Joan x

Went out clubbing for the first time this year! Woo hoo - no alcohol but really enjoyed myself!! I posted a pic in the community album of me from the night.

Love Cx

Hi Chloex,

Good for you, glad you had a nice time. If I can find th album I will have a look at you behaving disgracefully (I hope). Still trying to find my way around on here. Have noticed a distinct absence of weather talk on here, would'nt it be nice if that was the only thing any of us had to moan about.

L o L

Joan x

Joan,

i am a person who can read a joke and not laugh, but you sure got me to laughing when i read your comment about no one on here talking about the weather.

by the way, it is a beautiful day here

later, pete

Pete - the sun is shining - I think for the first time this year here today

Always disgraceful Joan - up untill my slight hitch this year. How is your friend?

Love Chloex

Hi Pete,

Glad I made you laugh about the weather, and Chloex is right, for a change it is a lovely sunny day, she is an hour or so away from me but think virtually the whole country is dry for a change.

My friend Paul is ok, I think. Have spoken to him yesterday and today but I think maybe he is a bit down. He says he is ok, throat sore so perhaps that, or maybe events from the past few weeks catching up. He has appointment friday at local hospital, talk about having peg. Appointment next Wednesday at Barts to have mask fitted and radiology planning, then hopefully full steam ahead. Think he probably just wants to get it all over and done with, its the waiting and the unknown eh.

LoL

Joan x

Chloex, just found your picture, you look hot!!!

Love that expression, says it all.

LoL
Joanx

Hi Joan

Thanks for the hot comment lol I haven't been hot for years - thanks cancer!!!

I advise Paul to get a PEG before treatment starts = otherwise it is another ordeal to go through when you are going through something really not nice as it is! I couldn't eat for 4 months not a thing! So relied upon my peg for nutrition. I am having the bloody reminder removed on the 22 of this month

Love Cx

Chloe

When you have the tube out, here is a little tip to help the scar tissue heal. Get some vitamin E capsules from the chemists, put a small hole in it and apply a little to the scar, twice a day. Put the remainder safely to one side and you can get two or three applications from each capsule. I was going to get Bio-oil but the pharmacist told me the the vitamin E is the only ingredient you need.

I hope this helps.

Ray

Hi chloe

great to hear you went clubbing i can't believe it! Gives me a lot of hope. Have my first appointment with consultant today since chemo/RT so a bit nervous but that bit of news fills me with hope! thanks

gordon

Hi Gordon,

I didn't drink but still made it out untill 2am and in 3" heels! Finished my treatment 22/05/08 - so not bad going. Good luck with your appointment.

Thanks for the tip Ray - I have been worrying about the contents of my stomach (not that there is ever much in there lol) seeping out of the hole. This won't happen will it? Are you back at work yet Ray? I am now back full time.

Love Chloex