hello, I'm Jane

First I'd just like to say what a great site - I've read it all over the past few weeks, the stories are truly inspirational, and I wish all of you fighting this disease well.

The reason I'm here is because a little over a month ago my 53 yr old husband was diagnosed with advanced stage mouth / tongue cancer. It's extremely aggressive, has spread to the nodes on both sides of his neck and has recently heamorraged through the skin under his chin. My husband does not not wish to know any more than is absolutely necassery, so has not asked for prognosis, or even details of the stage of the tumour. I can totally understand this, but unfortunately I am the opposite and have spent the last month looking up every peice of information I can find, and scaring myself silly in the process.

He is undergoing chemotherapy (cisplatin 8 weeks) and external radiotherapy (6 weeks) before a review of his case in September. The tumour is inoperable and the whole of one side of his face is full of it. The oncologist said that out of the 150-160 head and neck cancers he sees a year he will only see 1 or 2 as aggressive as this.

I realise I cannot expect anyone on here to make a prognosis based on that. But whichever way I try and look at it (and stay positive for him) it doesn't sound great does it?

Thank you for reading, as I say, I know you cannot give me the answers I am looking for, but we are all doing a very good job of 'ooh, it'll all be fine' here. I needed somewhere to be able to give in to the voice in the back of my head that's saying 'actually, it's not going to be fine at all...' I'm sorry if this isn't an appropriate place to do so (this place seems so full of hope and optimism) but I didn't know where else to turn

sorry, rambling now!

Jane

Afternoon Jane, welcome to the club no-one really wants to join. We may not be able to give you the answers you are looking for, but we are all good "listeners". This is just the place where you can freely express your feelings so rant on as much as you wish.
Its sounds as though his Medics have been very honest with him & hopefully the Chemo. will shrink the tumours & make him more comfortable.
Have you any support for yourself? Its hard to watch our loved one going through this treatment & we need all our reserves to do it. Family & friends can be very helpfull.
Come back to us, day or night, there are a few night owls on here!.

Hello Jane

Really sorry to hear about your husband and we all hope that the treatment he is receiving will help him to overcome his cancer.

I suppose the best thing I can say as a person with cancer is you will be your husbands lifeline, my wife was for me (and still is) and it can get tough.

Women are much stronger, tougher than men and seem to handle it better then us men.

When you get cancer the first thing you think is when am I going to die (or it was with me), later you start to think differently and start to fight back and take every day as it comes.

I don't know or can say anything that will make you feel better but I would say if your husband is receving treatment then he must have a fighting chance he will need all the strengh he can muster over the next 8 weeks.

The website and the people who post and give suggestions and help are brillant. I am sure over the next few days you will receive lots of posting.

You will meet some remarkable people on the site, some when you read there stories are amazing what they have gone thru and they are still alive and kicking.

So postive thinking is going to be really helpful, then there comes the practical side of building up your husbands defences making sure he get the right amount of food, R/T and chemo can seem like the worse thing in the world at the time but it has given us all a fighting chance.

Support is here whenever you need it.


Best wishe

Tony

Hi Jane
Tonys said it all

My wife is my strength to

All the best

dave and Sue

Hey Jane,
I'm so sorry to hear of your husbands fight with cancer.
I can totally understand you want to know exactly what you're dealing with, and as his carer it's important you get all the facts. Everyones cancer is unique & different in its way, and as Tony said. we are all equipped with the knowledge to help you through this tough time. We have tips and have been down your road too.

Keep us updated,
All the best,
Michelle

thank you all so much for replying, and it's heartening to hear that a partners support means so much - a lot of the time I feel frustrated in that I can't 'do' anything as such to help him. I guess just being there counts in these situations.

And Michelle, I lived in Hastings in my (largely mispent) youth! Spent more years than I care to admit propping up the bar in The Carlisle

best wishes to you all

Jane

Jane,
I know The Carlisle! It's hard to miss!

Keep us posted!
Michelle

My husband Bill was diagnosed in March this year with the primary in his tongue, secondary tonsils, throat and lymph glands at stage IV. It was decided by the learned ones that surgery would be too radical. The prognosis is 50/50. Just like your husband Bill only wants to hear positive, not what if’s and who can blame them. I think it is their defence mechanism and it keeps them positive, which, after all, is what we want. Like you, I want to know everything down to the tiniest minutiae; I also second-guess any remark that anyone makes. I have found if very difficult to speak to Bill’s consultant alone. I have spoken on the ‘phone to his Chemo nurse who says she can’t speak to me without Bill’s approval. Not that he disapproves; he just thinks it’s not necessary. He says they tell us all we need to know and that I shouldn’t bother them, they know what they are doing. However, I tracked down the McMillan nurse for our area who has proved more helpful, although she didn’t know Bills case, she was able to answer most of the questions I had with regard to why and what if. Not all perhaps what I wanted to hear but I feel better being told more 'like it is'

I am overwhelmed by the kindness, empathy and compassion which is on offer here. Everyone will try to help where they can but if you just want a shoulder, a scream, a rant you can do that here too. Although I still feel like the new girl on the block I am in the carriage of the roller coaster just in front of you, so please feel free if I can be of any assistance at all.

Try and keep your chin and your spirits up.

Angie

oh Angie, so sorry to hear you're in the same boat. Thank you so much for replying.

I too have spoken to the macmillan nurse - she's been fantastic and and said that if i wanted the consultant to speak to me then he would if Mike gave his permission. I'm sure Mike would give permission but she did also point out that I would then be in the position of knowing more about his condition than he does.

And I'm not so sure that would be a good thing either.

Thank you for your kind words, I hope Bills treatment goes well

Jane

Hi Jane,
I'm sorry to hear about your husbands problems, it's going to be tough going for BOTH of you. It's important that you take care of yourself too. I think we would all admit here, that at some time or another we have not been kind to the people helping us to get through our illnesses, it's all part and parcel of the reaction to it all. Take some time for yourself and as everyone has answered, any time you need to chat, shout, cry, get mad we are all here to listen and try our best to help.
Best Regards to you both,
SusieR

If you’re not sure whether it’s a good thing then maybe you shouldn’t.

How is Mike at present, how is he coping with his Chemo and how many has he had so farand how are you coping? Bill handled the chemo much better then I could have ever hoped for. His diseased nymph nodes reduced noticeably within the first few days of chemo. His chemo nurse says she thinks they have now gone. The lump on his tongue has quite visibly reduced. Quite unbelievable.

Thank you Susie, We did end up having 'words' yesterday after the 393rd time I got snapped at. But I am doing my best to be understanding!

Glad things are going well for Bill Angiebaby,
Mike's had 2 lots of chemo and seems to be fine with it. But then the quantities of steroids he's on afterwards have him bouncing around like tigger on acid! He tends to crash out on day 4 & 5 afterwards once he's off the tablets though.

I wouldn't say it's reduced anything yet, but it has at least stopped growing at such an alarming rate. He's in today to have the mask checked and another scan ready for radiotherapy on Monday. I probably won't be very popular because I phoned the Macmillan Nurse this morning and asked her to get someone to have a look at his chin where it's broken the surface as I think it's infected (I did try to discuss it with him but he shrugged it off) while he's there today. So I expect a lot of moaning about them 'messing about' and 'making a fuss over nothing' etc when he gets back

hopefully we'll start getting some positive news in the next few weeks, although I am very worried about the damage the radiotherapy is going to do.

Jane

Steroids do peculiar things, Bill has had some more for the chemo he had on Monday and only finishes the course today. Yesterday he never stopped talking all the way to the hospital and all the way back (about 2 hours round trip) and the whole time we were in the waiting room. Our fellow patients now know who should have what job in the new cabinet and how Gordon Brown should present his speeches in future. I don’t know which is best, high as a kite or grumpy.

How long where the chemo sessions he has already had? How long are they giving him between chemo and r/t?

Angie

How funny!

"Our fellow patients now know who should have what job in the new cabinet and how Gordon Brown should present his speeches in future."

Glad I'm not alone in putting up with one high as a kite!

Mike's on chemo and r/t concurrently - so r/t 5 days a week plus on Tuesdays he gets his r/t whilst plugged in to the chemo drip.

at least we know they're doing everything they can I suppose