Tumour diary: Riding the rollercoaster

BBC News Online science and technology writer Ivan Noble was diagnosed with a malignant brain tumour in August.

Here he describes meeting others affected by the condition.

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Last week I met a group of other people with brain tumours and heard some incredible stories.

Spending a whole day thinking about my cancer and dealing with some hard and gruesome facts left me scared and tired

One woman had had a tumour for 30 years. Hers was not the same kind as mine, but her story was inspiring nevertheless.

Another woman told the story of her husband, who has had a tumour similar to mine for nine years and is in good health and great spirits.

But at the same event I also stumbled across the very information I had been trying to evade - the survival rate for my tumour.

Looking behind the figures

I do not want to go into details, but let me just say that it was no great boost for me.

But it is interesting to look at what survival rates actually mean.

Doctors often deal with median survival periods.

They are simple statistics which indicate the length of time it takes for half of the patients with a certain condition to die.

So if the median survival rate for cancer X is one year, one would expect 50 out of 100 patients to be dead by the time a year has passed since their symptoms began.

Many years ago, a far better writer than I wrote about this, as readers of this column have pointed out.

Steven Jay Gould was diagnosed with a rare cancer and told that the median survival period was eight months.

He wrote "The Median is not the Message" and lived another 20 years.

Closer to home, a nurse at the meeting I attended mentioned a patient with my condition who was diagnosed in 1985. That patient is still well.

There is plenty for me to aim for, but I have to say that the experience of spending a whole day thinking about my cancer and dealing with some hard and gruesome facts left me scared and tired.

Ignorance is bliss?

Doctors face a very difficult task when they decide how much to tell patients.

They have to think about keeping a patient's spirits up and preserving the will to live, but at the same time they may feel that depriving a patient of accurate information on their condition deprives them of the right to make well-informed decisions.

I would not like to be in their shoes, nor would I have liked to be in the shoes of the registrar who had to give me my diagnosis.

It may be my imagination but I feel that I am getting better

I followed up a tough day of tumour facts with a visit to the neurosurgeons who did the emergency operation on me at the end of August.

The occasion for the meeting was to see how my scar has healed, but I ended up hearing more than I had hoped about the difficulty of managing a tumour like mine.

I felt my optimism ebbing away and started thinking the thoughts I try to avoid - the ones about things like what to put in my final letters to my family.

Seeing the light

Now I am glad I have had to face up to the hard facts and figures.

My spirits, like those of most people, are swung by fatigue and the weather.

As I write, it is a beautiful, clear autumn day and I am well rested, happy and positive.

It may be my imagination, but I feel that I am getting better and that my vision is improving together with my other symptoms.

The neurosurgeons say that even if I do very well, I will never regain the sight I have lost on my right side. I am not so sure.

The next step for me is chemotherapy, beginning on 6th November.

We will go from trying to kill my tumour with powerful X-rays to trying to poison it with powerful drugs.

In the meantime, we are scanning the web sites of the discount travel agents.

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Your e-mails to Ivan

Ivan, how positive you are, my prayers are with you. Keep fighting - your story gives me courage to face the future.
Sandra, UK

Odds of winning the lottery are far less than the odds of you beating this Debbie, England

Self-belief is your greatest asset. Believe that you are getting better and if you don't you haven't lost. On a lighter note (and humour is a key weapon in your armoury!) the odds of winning the lottery are far less than the odds of you beating this. It doesn't stop millions of people hoping each week!
Debbie, England

Tell me... can you feel how many people are willing you on and wanting the best for you, or is it imperceptible?
Tom Draper, UK

You have continued to inspire me with your column, and I have so much respect for your courage. Not just bland courage, but the courage to admit that this will not be an easy fight. But you have nothing to lose by giving it all you've got, no matter what else you find out, however you feel. I am praying for you, brother. God bless you!
Richie, Japan

I've only just found this page of yours and immediately read all the others. I've had a brain tumour for four years. When I first found out I made the neurosurgeon tell me what the odds were (median five years). As you know, it's a shock - but I think it's better to know because then you know what you've got to beat, and we're winning! Keep it up.
Richard Stevens, England

I was determined to beat this and I have Yvette Dawson, UK

I wish you well and hope that like myself you beat this cruel disease. I was diagnosed with a malignant brain tumour six years ago. I was told that I had nine months to live. I had the wonderful support of my husband David and all my family. I had a brilliant medical team at Christies and Preston Hospital. I was determined to beat this and I have. Keep your chin up - or chins as it was in my case (the steroids piled the weight on but I am losing it now). Keep positive. Best wishes,
Yvette Dawson, UK

My best wishes for your recovery. I was diagnosed with breast cancer in August 2001. Like you I've had surgery, chemotherapy and radiotherapy. Coping with the diagnosis is not easy - your future seems to vanish. Take each day as it comes, there will be good and bad ones, but look at your statistics in a positive light - 'the glass is half full, rather than half-empty'. All that has happened is that you've had your nose rubbed in the fact that you are mortal, so take each day as it comes and get the best out of it. There's a quote I've come to like - which I'll probably get wrong: "Fear not that you will die, fear instead that you will not begin to live."

Anyway, good luck - your treatment is a journey, lots of us are taking it. Rely on your friends and family when you need them - they will feel good about helping you.
Anne McLaughlin, Scotland

My Dad was diagnosed with a brain tumour six years ago. After the initial operation they said he'd never walk again. Two months later he was on his feet. Towards the end they gave him two weeks. He lived for a further three months. I couldn't be with him when he died and wasn't able to attend the funeral either but knowing how he'd defied the doctors their "median" made me stronger. It's about enjoying what you've got while you've got it that counts so much at the last. I wish you the strength to get through these difficult times and offer my support and belief in the human spirit.
Sarah Cave, England

Taking care of practical matters is not a sign of resignation Rachel Rose, UK

Dear Ivan, Facing up to the reality of the statistics is tough. My mum was taken by an astrocytoma. I would like to encourage you to accept the stats and make all the preparations that you can. You never know when you may succumb to the debilitating mental side-effects of a brain tumour, only to find that there are things you are no longer able to do. I have sent your story to my whole family and we are touched, and all admire your eloquence and bravery. Keep it up, but do the necessary too. Taking care of practical matters is not a sign of resignation. Good luck and bon courage.
Rachel Rose, UK

Ivan,
As someone who is going to see a consultant neurologist tomorrow about a potential brain tumour, reading your columns over the past couple of weeks has helped me with the agonising wait to find out what is going on in my head. The pain although not a migraine is still enough to cause me enormous distress, coupled with the wait has had me breaking down on more than one occasion. However your insight into living through it has given me strength and the hope that there is a possibility of a reasonable life afterwards if the news is the worst. I wish you all the best in your fight and pray that you, like others, will beat the tumour to live a long prosperous life.
Jeff, UK

It is refreshing to read and hear someone's thoughts and comments on a very candid level. Cancer has always been a very taboo subject. My mother had cancer and like Ivan, she was a true fighter, and referred to her cancer not as a illness but as a condition. She lost her fight eventually, but never gave up hope. Please continue to fight as every day is precious to you and your family.
, US

I had a cancerous tumour and received a combination of chemotherapy and radiotherapy. Now seven years later there is no sign that it has returned, and I am well and living a normal life. Staying positive is very important, as is having keen ongoing emotional support from family and friends.
David, UK

Ivan, carry on being positive, and enjoy that holiday. My husband is currently undergoing chemotherapy for stomach cancer, and like you we don't go by statistics, we are going to fight this disease and beat the odds. Our prayers are with you.
Soraya, UK

I want to offer my support and encouragement to you. As someone who beat malignant melanoma, a particularly virulent and fast spreading form of cancer, I'd like to share my experience with you. Fight your cancer with a fierce determination and a positive frame of mind. Always think "I will beat this." Never allow yourself to head in the direction of despair and depression. When you start feeling this way, call someone you know will support you and encourage you to fight. Try guided imagery in your mind about fighting the tumour. And you will. One last suggestion, read Norman Cousin's book, Anatomy of an Illness.
With Much Aloha,
Bruce Behnke, Hawaii, US

Ivan,
I was very sorry to hear of your diagnosis. Despite my occupation, I still find it difficult to come to terms with a tumour in a young person - not that its much better in the elderly. I am still optimistic that co-ordinated research through charities like the Cancer Research Campaign will start to pay dividends by attacking the genetic basis of cancer. I pay by direct debit to the charity each month - I encourage anyone concerned about cancer to do the same. My very best wishes go to you. Please keep writing and if its not too painful let us know how you are doing. Kind regards,
Dr David Caughey, UK