Hi everyone,

Firstly, as the daughter of a man in his early 50's who was diagnosed with oral cancer 18 months ago, my hat goes off to all of you directly or indirectly dealing with this awful disease.

To give you a bit of background, my Dad had never smoked, barely drank and all throughout his adult life has been a serial marathon runner and healthy eater. It came as such a shock when he developed a tongue ulcer which was biopsied and came back as malignant after it did not heal. After surgery combined with the max treatment of radiotherapy and having to rely on a stomach peg then having it removed, the tumour then reappeared in his throat. To cut a long story short, he can no longer swallow, chew or even talk very well. He had to have the peg refitted and has been 'eating' through this second stomach peg for nearly 6 months. It is agony to open his mouth and his salivary glands are inactive due to the radio. He is now onto his second round of chemo [He's had one of the 3] and he has been told that this is the last they can do for him after the remaining 2 chemo sessions. They can't operate again due to the location and size [around half a cricket ball apparently] His CT last month showed no metastasis and slight shrinkage, but certainly no significant improvement. He feels very angry and frustrated spends all day preparing his feeds and liquid meds etc. He gets cold very easily as he's so thin and other than sitting in the garden for a little on hot days, is pretty much keeping himself in his room as he can't communicate and is really self concious about the smell that comes from his throat/mouth. Leaving the house is painful, inconvenient for him, makes him more upset and actually if I'm honest, serves no purpose.

Anyway, he has decided that due to his prolonged agony, seeing little or no improvement after all this time, zero quality of life and with pain levels increasing, he has had enough. I love my Dad with all my heart and although losing parents is inevitable, I was never expecting to have to be facing the prospect in my early 20's I can't bear to see him suffer like this, and any reasonable person couldn't expect him to want to go on any longer - he's fought so bravely.

I guess my question is, once the tumour begins to grow what can we expect? Is it the fact that the cancer eventually spreads that it becomes fatal? I know that each patient is different but I'm assuming his airways will eventually become obstructed? Is he likely to have to move to hospital? We have a registrar meeting next week so I'm not looking for an internet prognosis, I guess I'm just coming here for a bit of advice or support, or indeed to hear similar experiences. Guess I'd just like an inkling into what we might expect as a family. I hate having these morbid conversations but I feel facing reality will help. Sorry for the extended post and please move this if I've posted to the wrong forum. I'm not particularly religious, but to those affected by this horrendous disease, you're all in my thoughts and prayers. Thanks in advance,

Julie

Hello Julie

I am so sorry that this disease is causing your dad and your family so much grief. All I can say to all of you is to be brave and to try live each day well and be supportive of one another. Life after cancer is never the same but it can be worth living if made comfortable. Ananth has been living a great life despite feeding through a PEG for the last 7 years. It is not the number of days one lives but how one chooses to live the days that makes the difference. Do not loose hope.

Please speak to the oncologist about newer treatments like IMRT and Erbitux to treat his inoperable cancer.

Your dad and you will be in my thoughts and I pray that there will be some lightening of your burden.

Best wishes
Vinod

Dear Julie,
My name is Ananth which means - The Immortal in Hindi. Its ironical that I have that name and was also born under the same sunshine - cancer! I used to be a smoker and would smoke a lot with stress levels increasing all the time and what I got was what I am leading right now - a complete stress free life as I have cancer. The cancer was diagnosed in the year 2000 and though we expected things to go smoothly, I guess life had other plans and my body took such a beating that even I still keep wondering why and I am alive. There were countless instances where the doctors would give up on me and I would be up the very next day. I had double the dosage of radiation a person can get in his/her entire lifetime. For all - that itself should have killed me. There are so many more instances ( You can read Ananth's Story - by clicking on the same on the main page of the site).

Somehow, I never ever thought of dying as an option and though at times I do contemplate as to why should I live, there are countless reasons. looking at things from your Dads perspective - he has to still see you growing up even though you are twenty, I am sure there are other things in life which one always put off thinking we we never had the time. Now is the time to get down to doing all those incompleted jobs and dreams. Dreams is a very realtive term as I also understand I lost everything I loved the day I was diagnosed with cancer - my travelling days were over, my job which was an extension of my life. Suddenly there was a void and I used to keep to myself, never go out of my room, let alone my bedroom. I had just two or three really good friends who I would allow to come and meet me, my constant companions was my TV and my computers. My wife, my mum and my two kids - who were just 9 and 7 when I got the cancer are now all grown up and it has been a pleasure to see them growing up. I have become so much closer to everyone - not just the family but the world in general. There is one thing I keep repeating - the clock cannot be turned back - so its best to move on in a positive frame of mind.
It has now been eight years since I last had one solid meal or a sip of water. Everything has to be put into throught the peg tube. I used to detest the thing but now cannot imagine life without it. I do everything a normal person does - I still enjoy dressing up, driving, riding my bike and of course -something I have been doing since I was a kid - working out really hard at the gym and running. I see your Dad was into running.After going for my regular check ups for about a year - I quit going to the doctor as I had decided I had enough of hospitals and if anything had to happen to me - it would irrespective if I was in the hospital or not. Life is not in our hands and taking it away forcefully is a cowards way out. I know the outcome of my illness but dont let that worry me as I live for each day and make sure that I live each day to its fullest. Even though your Dad is so unwell - it hardly means that life is over. Life is over when life decides. As long as there is life there is hope and thats onething which he should believe in. I really do feel for you but honestly the only person who can help your Dad is he himself. Ask him if he is scared? If he is - of what? He has been through hell and whatever the outcome is still alive and thats for a reason. He is not going anywhere till his time comes along - so during this period he should live life to its optimum. So what if he cannot eat or drink orally? So what if he has scars - he does not have to worry about strangers who pass him by as they have no place in his lives and those who know him accept him as he is. Being concious about his looks as I said is not an excuse to life a life that is full and enjoyable. what is there to be concious about - nothing can change what has happened and the faster one accepts it the faster you get out of all depressions and start living.

I would love to chat with him and if you feel it will make some difference to changing his views about life and cancer please feel free to write to me anytime. It will a pleasure if I can be of any help. However, do read the story. Its on the main page- right hand side where it says survivors.I am sure he will see himself in that story. For now though wish him all the very best for a quick jump into the normal life stream.

Take care Julie,
With love and warm regards,
Ananth

One thing more Julie - feeding through a peg does not really mean one looses so much weight. I have been stable for all these years except for some in between. I have almost all the nourishment that any normal person can have and in the even I feel like "eating" something orally ( like a chocolate) I put it into my mouth, taste it nice and proper and then bin it. so not only do I get to taste my food but also have it - only in a different form and then also remember it means the end of spending time on chewing your food etc - such a waste of time. Here it is all set for you and its right there where it goes but without chewing on it. I have these crazy moods at moments (very often) when my sense of humor comes running forth - and humor is the best form of meicine.
Love and hugs,
Ananth

Hello Julie, so sorry to hear about your dad. It isn’t fair is it? When you have the meeting with the registrar, don’t pull any punches, let them know just how it is and how your dad is feeling. If you don’t want to say anything in front of your dad, try to contact the registrar before the meeting. I totally agree with everything Dr J says but I can also totally understand how your dad feels.

I am not religious so cannot commit to praying for you dad but will keep him in my thoughts. Keep us posted.

Hang in there Julie and be strong for your Dad. I hope he see's life is worth living - to see and play with his grandkids (that is what I inted to be doing in 10-15 years). Hopefully the registrar will help him throug this difficult patch - but be firm and insistant.

Love to you both - you sound like a very caring daughter - it must be so difficult for you.

Love Chloex

Hi Julie, sorry that you have to use this site, it would be better if nobody needed it. I hope your dad finds some strength to fight his way out of this rough patch.
For someone in their early twenties you sound very strong so hopefully that will have a positive effect on him. Good luck to you all, remember, we are always here for support. Hagg.

Hi Julie, so sorry to hear about your dad, there is nothing to make your pain easier, I went through it when I was 27 and pregnant with my second child. All I will say is that now at 45 I miss my dad every single day, he was the kindest person anyone could wish to meet, who didn't deserve the end he had, (who does), but his kindness has stayed with me, my husband who is now facing the treatment from hell (when we met I said to my mum it's strange he really reminds me of dad)would have loved to meet him.

Words will not help you face what you will face but say what's in your heart and have no regrets.

Best wishes for that ahead

Joanne x

Hi Julie,
Is your family in touch with a MacMillan nurse? They are an amazing source of comfort, support and practical help. Your dad needs to discuss with his oncologist about more adequate pain control as it's not right he should be suffering with the pain. That is at least something they can get right.

I can't imagine how i'd feel having to face the possibility of losing a parent. I'm 24 and my parents were my rocks when i went through threatment.

We're all here for a shoulder if you want it.

All the best,
Michelle

Thank you to everybody for your kind thoughts and comforting words. Early this morning it would appear the tumour ruptured and Dad had somewhat of a 'bleed out'. My mum was with him and said it was just too distressing for words. She called the ambulance and within 15mins he was being prepped for trachea surgery to prevent him aspirating on his own blood.

I'm in shock really. He is now being heavily sedated and the next 24 hours will be crucial. I am an inherently positive person, but I can't bear to see him go through this. I really just don't want him to suffer. Any spare prayers would be so appreciated. You are all fighting such courageous battles and I feel glad to be in your company. Thanks again. Love you Dad x

Hi Julie, sorry to hear things have taken a turn for the worse. Hang in there and my thoughts are with you and your family. Hagg.

God bless Julie - thinking of your Dad and you.

Love Chloex

Hello Julie,
What an awful experience for your poor mum.
There was a point after my first chemo cycle when my tumour ruptured. I think for me it was when the tumour began to shrink. I was still hooked up to my home chemo pack at the time! We had the ambulance out and thankfully the bleeding eased up.
You're all going through such an awful time right now. I'm so sorry for you you all.

Your family will be in my thoughts.

Michelle

I'm not much of a prayer, but a firm believer in the power of positive thought. My thoughts are and have been all day with you and your family.

Joanne x

Julie

Reading about your father's plight is very distressing.I hope he can be given comfort over the next few days and relief from the pain he going through.One thing that should give him comfort is what a caring and loving person you are.Its sometimes harder for the children and the family to watch their loved ones go through this terrible ordeal.My daughter is a similar age to you.

My very best wishes are with you and your dad

take care

Robert