Whoops! That should have read---Feeling better this morning

Hello Chell and Fran

You are both so kind and quite right and I think I over reacted. I have to get used to not being the centre of attention anymore. Fortunately I let off steam here and didnt say anything to him. Which is unusual for me, usually jump in with both feet kicking!

After reading some more on this site, there are many of you out there who, I think, have been worse than Bill and therefore, I do feel confident that, although I know he has a few hurdles to get over, he will be ok.

Thanks again.

Angie

Hi Angie,

Being and remaining positive is so important in this situation. The diagnosis of cancer is still and shall I think forever be traumatic both for the patient and the family, with its historical associations of pain and death: notwithstanding advances in medicine and where appropriate palliative care.

I am a laryngectomee had my larynx removed due to cancer some years ago now. But my wife found the new me post treatment freakish, I speak from the oesophagus (foodpipe)and can sound like a perv on the phone and now breathe through a hole (stoma) in my neck. It took my wife 18 months to get used to me after the operation and I had anecdotal stories of wives never letting their husbands near them again, my wife was not that bad. But for the first year I could see the revulsion in her face when I was learning to speak again or my stoma covering slipped off or I had to take it off to clean the phlegm.

It was worse for her than me, I am a Christian and death holds no fear for me save for ensuring my family is catered for, which they are. The worst that could happen to me was that I would die, my family could have been left alone for years. My wife herself is now registered disabled with a lung disorder and depends upon me as a carer as well as a provider.

So Angie you are not being selfish, inconsiderate or acting in your own self interest. The gambit of emotions you are feeling is quite normal and the fact that you have sought out this forum for help and guidance is testimony to your positiveness which is fundmental to your wellbeing and survival, as Bill faces treatment and an unsure future. Make allowances for him, be kind even if he at times seems irrational he will be worrying about you and all the family coping if he is not here or if he needs constant care. No one wishes to be a burden on another and certainly not those they love, but they would be the first to give help were the tables turned.

I pray God's grace upon you may you know His love at the lowest points of the treatment when you do not know how to face tomorrow, be sure that you will never be alone. Take each day as it comes but plan for a future too, a small break away when Bill is up to an excursion post treatment.

It is difficult to keep positive Angie I will not pretend otherwise, there will be days when you may wish things that you would not confess to a priest let alone family, but do not despair your life is as important as Bill's as is the rest of the family: this is a crisis in which all can share the burden and motivate and support each other.

You are not alone, try to talk to each other about your cares and concerns, and believe me a hug is worth a million words when you are frightened and I missed that simple comfort and reassurance for so many months after my opertation. DWR

Hi DWR

Thank you so much, your words and those of others on this site bring me great solace when every day seems to bring another battle.

We go to Christies on Thurday so I really would like tomorrow to last forever whilst Bill looks fit and healthy, although he has lost 2 stone in the last couple of months (which he could afford to) and the grey pallor he has carried for the last few months has disappeared but he is still extremely intolerant, which as you quite rightly say, I must make allowances for.

Thank you once again for your thoughts which I know I will be returning to when I need some motivation as I will to others who have passed on comforting messages.

Does that sound pious? sorry I dont mean to be.

Angie

Good luck for Thursday Angie.
Do let us know how you both get on.

Hi Chell

How are you feeling after your first week back in the real world! Be fair, you have done wonderfully well, I keep telling Bill how great you have been. I hope your fairy godmother hears you and you get to go on a Safari trip (ok without insurance)

Just got back from Christies, better news than I had hoped for, they have given Bill 50/50 chance of cure. His cancer is stage 4 (is that good or bad, I notice you say yours was stage IIb, so don’t know really what that means and he doesn’t want me to ask questions and I can understand why, he doesn’t want to be demotivated now, thinking how bad it can be he only wants positive!). I understand from what they said that surgery would be too extreme.

He is going in on the 25th (another question I did not ask, will it not get bigger between now and then, ergo lessening the chances of success?) he will have five days of chemo in the hospital then two weeks at home, back to hospital for 5 days another two weeks at home then back every day for 20 days (five days a week) for chemo and radiotherapy, He will be having 5FU and Cisplatin (I didn’t but felt like saying, oh yes, my friend Michelle had that) and also Taxotere.

So there we are, I am not cancelling our holiday booked for August.

I am just so amazed, I thought cancer sufferers were rare and special, the place was bursting at the seams, there’s millions of you!

Love

Angie

Hello Angie,
I'm so pleased it went ok for you today, and things are not quite as bad as you thought they may be.
I'm sure the doctors are fairly confident that waiting until the 25th wont cause too many problems. It was about a month after i was diagnosed that i started treatment. In that time i had a C.T. scan, an M.R.I. scan, a hearing test, a trip to the maxillo-facial unit about my teeth, a cardio scan, and a Groshong fitted. I barely got time to take it all in!
My chemo was also on a 21 day cycle, but i had the 5fu at home on a pump attached to my Groshong line. So i only stayed in for 24 hours.
Bill has a great attitude with not wanting to be demotivated. When i was diagnosed i immediately searched the net & instantly regretted it! A little knowledge can be dangerous so they say *lol.
The staging for Nasopharyngeal cancer, the type that i had, is different to others. My tumour would have been a 3/4 (T4) my lymph gland would be a 1 (N1). But the way they stage it is by where the tumour had spread to (ie. had it grown towards base of skull or in my case down the nostril), the size of the lymph node involved (less than or greater than 6cm) & if it effects both sides of the neck nodes. So that's how they came up with IIb. I don't know about the staging for other cancers, sorry! My MacMillan nurse (who are angels in dusguise) said they "threw the book" at me *lol.
& Bill should remember he IS NOT A STATISTIC.
As i kept reminding myself.

Keep us posted Angie. Take care,
Michelle x

Hi Chell

B* H* Chell, thats a lot to take in.

Bill was given the advice by a colleague not to surf re his tumour and I am surprised (and pleased) he hasn't done, he does for everything else! but I must say, I am so pleased I found this site it has given me great confidence, insight and reassurance. I feel as if I am not on my own, well, I know I am not, there are a lot of you great guys out there.

Thanks

Angie X