Hello all, I wanted to write and tell you about my mother. I posted on this sight at the beginning of the year desparate for help, advise and good stories to hear as my mother was diagnosed with a T4 tumor on her upper jaw in January.

The whole family was shocked at the diagnoses as it came so out of blue, it was a painless cancer at first, she had a bad tooth in her upper mouth and could see she had a bit of a growth on her gum, but to be truthful, due to it being painless she just foolishly waited till her dental appointment not even worrying what was wrong, can you believe it!

Our whole world fell apart very quickly when the surgeons said she was in serious trouble and had to have half her upper jaw removed and half the roof of her mouth for her to have any chance of survival! Yet she looked so well? how could this be? but we were told if this wasnt cut out immediately it would spread and kill her.

Her saving grace was after a nerve wracking wait for MRI results, she had no cancer spread and even though her tumour was at a stage 4, it was just about operable and providing they could cut it all out she might have a chance.

Well faster than I could take in all the bad news she was being operated on, surgeons cut a large inscision right across her skull to take out 'matter' to rebuild the part of the roof of her mouth they took away and they cut her face down the side of her nose, to peel back the cheek to take away the offending cancer of the upper jaw. It was a living hell to be truthful.

I sat with my mother by her bedside ALL DAY every day, keeping her positive and giving credit where it was due she found the strength to deal with what was happening to her extreemly well.

There were very unpleasant times, the swelling, the tubes to drain the blood from her skull, the stitches and scars (yuk!) when at first she ate food and liquid poured from her nose, you couldnt help but worry, 'was this normal?' when she came home and I tryed to wash her hair with staples in her head, it was not pleasant at all! the waiting, the worrying, the tears, the fear, the heartache, the thought I may loose my mum, I can understand all your worries, but we some how managed to come through it.

She now has a large plate in her mouth to replace the area cut away, its like a very large denture, but she has mastered wearing it and even says now 'its not that bad, I can cope with it' she had her second MRI scan and there is still no spread nearly six months on (she see's a surgeon fortnightly for checks and a dentist weekly to adjust her plate and to make it comfortable)
She feels reassured by these check ups as she feels if it does return it will be caught quickly and can be dealt with hopefully? and whilst we live in fear at the back of our minds, it may return one day, we are back in the light, it is all looking hopeful and life is fine again.

Mum didnt have chemo or radiation as she had no spread, it was decide not to give it to her now, but hold it back in case it comes back so she has another form of defense 'on standby' so to speak, but it was decided not to destress her with it now, if they cut a clear margin round the tumour, which they did thankfully.

Mums scars have healed and only a faint hair lip remains, her plate looks no worse than dentures and she is just living each day fully, so much so I took her to see Tom Jones in concert last week and we go out on day trips daily, to enjoy the summer weather we are experience over here in the UK. I will report back at the end of the year, hopefully with continueing good news, but for those of you out there worrying, stay strong, there is no easy way to deal with this, this was one of the darkest times in our lives, but you too may come out of this as we have so dont loose hope, dont give up, mum truely beleives in 'mind over matter' she took the bull by the horns and was determined to fight it all the way.

We were lucky i guess not having 'spread' but for anyone in a similar position take heart, stay strong.

As soon as we heard the words T4 we thought, she is in trouble, everything we read left us believe she would never pull through, I foolishly asked a 'so called expert' advise on the net (on another sight) desparate for comfort and he said say your goodbyes to my mum! (honestly)I was devastated! so be careful who you talk to! he left me thinking I wouldn't even get these six months I have just had with her!

I have to say however this sight was BRILLIANT!! Our saving grace, such a rock to both my mother and I, the founder of this sight was absolutely inspirational to us both, thank you Brian! You have no idea how your words helped us both through this awful time.

I realise we may just be in the 'lucky' section, but to anyone in a similar situation, if this helps in anyway, my mother followed the Bristol Diet (a vegan style diet recommended to slow cancer down here in the UK) she had the support of a strong loving family, she tried every remedy and old wives tale 'just in case!' including healing crystals and reiki and my older relatives (who are more religous than I prayed for her) I have no idea if anyone of these factors helped, but for anyone in the same boat, try it all!! we tried the daftest of things and look back and laugh at how desparate we were, but as mum said, one of these things may have just made the difference and if it didnt work at least we knew we had tried it all.

Finally a great big thank you to mums surgeon Dr Guest, Bristol BRI, UK . You were one of the most compasionate and dedicated men I have ever met, you were honest with us and you treated my mother with so much respect and care. I thank you personally.

So to all who read this, Stay strong, positive and stay well.

Finally if anyone is suffering from something similar and wants to send us e mails, feel free to do so, dont go through this alone.

My very best wishes to you all I send you all 'positive thoughts'

Su (daughter of Janet aged 66 cancer patient)
Bristol, England, UK

Su,
A wonderful, wonderful posting! What great news and such a positive, upbeat meassage! Thank you for sharing!
Amy

Su, I thought about you and your mum just the other day. Little did I know what specacular news you had to share! Please give her a big hug for being so very brave. Mind over matter is the only way to face this terrible disease, and she must be a master at it. Your joy comes through your message so clearly, and it is exactly what we all need to hear. I hope to hear these kinds of posts from you for years and years and years!
Joanna, smiling back at you

Su,
I have been down in the dumps all day and this was exactly what I needed to hear! God bless you and thank you for your wonderful post.

Gary A.
----------------------------
SCC, Stage III, right tonsil
chemo x2, radiation x33
treatment began 1/28/03
treatment ended 3/19/03

Su,

Such great news - thank you for sharing. We all hope you and your Mom will be around often to share with us. Give Mom my best wishes. And to you too, I'm sure you helped her journey through this by being such a good caretaker.

Dinah

Thanks to the four of you for sending us good wishes, I am so glad mums story has cheered you up!

Whilst we are aware that cancer can return at any time, I have to say mum really is looking well at the moment. Thank goodness! and I am thankful for every good day!

Maybe it's because she is on the Bristol diet a very healthy diet, but her skin is nice and fresh looking, she is a nice slim shape and her eyes are bright!

We have gone out on some shopping trips to buy some new clothes for her, so she can feel good about herself (as she still has slight scarring to the face and her hair is a little thin on one side, due to the op) and I treated her to a hair cut last week to keep her feeling good and up beat.

I cannot emphasize enough, how in february this year I was nursing a woman who I really feared I might loose, it really was the most awful time (I used to get nightmares, waking up in a sweat, regarding the seriousness of the op my mum had to endure! I cried my heart out some nights when i got home from the hospital, I was inconsoleable, my hubby just hugged me and could say nothing to console me and then I went back in the next morning being strong once again, telling her to keep going, not give up, stay strong, all you carers know how heart breaking it is to see a loved one suffer and how draining it is being supportive! The days were extreemely dark and the shock of it came all at once! One minute life was just fine, the next, BANG this!! )

I am so lucky to have her with us now and at the moment she is so well and I just want everyone to know that you too could survive this horrible disease or at the very least have some more quality time to live!!

You have read the awful things my mother had to endure and although life is a bit different these days, there is still quality of life and fun after it all, so please dont go through this alone, mum even goes to restuarants now and can eat in public, which we just never thought we would do again!

If you click on the name Janet09 on this link, you can see a photo of us both and you can see mums scar under her nose. It looks even better now as this photo was about a month or so after the op, just after the swelling and all the nasty bits had healed, her head is still quite swollen in this pic, but she looks much thinner now. I will try and put a more recent one on soon, for you to look at.

I am only too pleased to talk to you, lend you support, send you e mails, even mum said she would 'hand write' a letter to anyone who would like support and is going through something similar (she isnt very good on computers and I write e mails for her, but she often says if I hear of anyone who has upper jaw cancer and needs to hear from her, I must give her their address, so she can write to them personally and offer them support as we both know how very important that is)

Again we send positive thoughts to everyone on this sight, try everything to get yourself well, listen to the doctors advise, be kind to yourself and we send all our best wishes from over the pond to you all xxx

Su (and her mum Janet) Bristol, south west of England, UK

Dear Su, This is truly wonderful news! I am so happy for your mother and you, that things seem to be under control and she is doing so much better. I clicked on your name and saw the pics - you're mom looks fantastic in that picture!! It's nice to know that she is even feeling better than before and looking healthier too. As a caregiver myself - I can totally relate to what you mentioned about how taxing it is on the nerves when things aren't going right, or any new "symptom" seems to pop up out of the blue. There are always good days and not so good ones too, but each day that we have our loved ones with us is truly a blessing - no matter what. Your story offers hope and cheer to many who are still going through treatments, or just beginning their journey. Tell mum to stay strong, eat well, think positive and to enjoy life to it's fullest!! A BIG wish for a continued speedy recovery from Rocky River, Ohio (USA) to a great mum & daughter in Bristol, UK. Take care!!

How's your mum? It would be worthwhile to read about how she has been doing.

Bill, this thread is 8 years old. The original posting member hasnt posted anything since 2005.

Christine

Well, answering an 8 year old thread seems as reasonable as not getting any real treatment for stage IV BOT. Bill should get points for consistency .
Charm