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Last Updated: Tuesday, 1 October, 2002, 10:58 GMT 11:58 UK
Tumour diary: Terrors of the net
Ivan
Ivan undergoing treatment
BBC News Online science and technology writer Ivan Noble was diagnosed with a malignant brain tumour in August.

In this third column he describes his treatment and how searching the net for information on his condition gave him a severe fright.


I have just had my tenth dose of radiotherapy and I have 20 more to go.

The picture shows the transparent plastic shell I wear to keep my head in the right place and provide something for the technicians to line up the beam.

It is not uncomfortable and I only have to wear it for about five minutes. It has holes for my eyes and nose and clamps at the back to hold me still.

I decided not to believe what I had read
I am hoping to hang on to it when I have finished.

This week I have put my toe in the waters of medical information on the internet and have given myself a real fright.

Browsing the net

It made me think really hard about how much I want to know about my tumour.

I was browsing at four in the morning, wide awake as I sometimes am from the steroids I have to take.

I came across a site where a patient who said he had the same tumour as I have described asking a doctor how many people with our condition are alive three years after diagnosis.

"None" was the reply he quoted.

I do not know whether there is any truth in what he says, but, of course, it terrified me.

Until now I have been working on the assumption that however bad my chances might be statistically, they are not zero and therefore I have everything to fight for.

Not just a relatively long and pain-free illness, but perhaps a real long-term remission.

I decided not to believe what I had read.

It was an anecdote among many, and for every time I have heard something like that, I have heard 10 stories of people surviving years and even decades.

I am sceptical that anyone really is "given months to live", anyway. It seems such an impossible thing to predict that I cannot imagine any doctor committing themselves, unless a patient really insisted.

Steering clear

I have decided to steer clear of medical web sites for the time being.

I am fit and well and strangely very happy at the moment, so I am just going to ignore them.

It is wonderful that so much information is available and that patients can be as well informed as they want to be.

But it is very difficult to filter that information. It is not possible to start search the net and hope to see only encouraging news.

Along with the details of therapies, diets and clinical trials, there is cold, clinical information out there about how many people die and how they die.

Link leads to link and it is easy to terrify oneself like I did.

It is easy to terrify oneself like I did
The great luxury I have is that my partner is a biologist who works in cancer research.

It has been a massive shock to her to suddenly have her career made intensely personal in this awful way, but in the circumstances, her knowledge and contacts are very useful for me.

She has the unenviable task of sifting through information on treatments and giving me the positive stuff, for which I am very grateful.

We think that the bottom line is that there is much we and my doctors do not yet know about my tumour.

In time we will know how tough it is going to be to kill, but only in time.

There is plenty for us to be busy with before then.

Enjoying treatment

One more thing I read on the net was that my feelings of almost enjoying the therapy are not uncommon.

Many other patients also get a real boost out of starting treatment and it is not uncommon to feel a bit of an emotional low at the end of the radiotherapy, simply because it is a shock to be doing nothing and waiting to see what has happened after being the subject of such intensive care and attention for weeks.

I know that come late next month I am going to miss my daily trips, even if by then I am tired and patchy on top as a result of them.

I have suffered only one major side effect from the whole cancer experience so far, and that has been financial.

My feelings of almost enjoying the therapy are not uncommon
Anyone who knows me will know my obsession with gadgetry, particularly any kind of gadgetry which can be connected to other gadgetry and made to do something pointless but hard to configure.

Connecting satellite navigation receivers to old laptops running obscure operating systems and simultaneously linking to a PDA is my idea of recreational heaven.

But there is a natural barrier to pointless gadget acquisition formed by the fact that there is always something new coming along and it is usually better to wait three months and get the next model, or this model when it is no longer at its bleeding edge price, or the second generation one with the drivers that actually work.

Being diagnosed with a brain tumour blows that restraint out of the water.

Online retailers of the world, rejoice!


Your e-mails to Ivan

Thank you for sharing your experience with us, thereby allowing us to keep you in our thoughts and prayers. Each day is a new day and may it bring you the love of family, the return of good health and the comfort of friends and supporters, both near and far. Ivan, your courage and tenacity is a lesson for all of us.
Dawn Paxton, Australia

Mate, reassure yourself constantly that you are not the only one going through what you are facing at the moment. I got the 'news' four years ago and had a reoccurrence two years ago (different cancer) and the best advice, remember your life is bigger than your tumour and live for the moment. Hope the treatment goes well and I'll be thinking of you.
PS - I kept the shell too.
James, Australia

Just keep fighting. Don't give up at any stage.
Sue, UK

I can imagine the column you write when in remission months down the line
Jenny, US
Your column is written in such a way that I really believe you are going to beat this. I can imagine the column you write when in remission some months down the line. I so admire your positive attitude and I think it can only help you. Your strength and honesty is an inspiration to people, who through your experiences realize how fortunate they are. Thank you and all best wishes.
Jenny, US

This guy should be knighted, not Alan Greenspan.
Dan, UK/US

The fear and anxiety of something bad happening is usually worse and more paralysing than if it actually happened. Ivan, keep your spirit high, it has always proved that this is the most effective cure. You have a scientific background, and so you should believe in science and how much easier and effective it is to treat and cure cancer.
Thamer Adelbi, Jordan

I know exactly what you mean about gadgets
Chris Upton, NE England
Ivan, I don't want to talk of illness or God. I just want to say that I know exactly what you mean about gadgets like that. I think that thinking of stuff like that instead of religious stuff is much better because you you can consider all the possibilities you want but at the end of the day you can still be bowled over when something actually works! Cheers mate.
Chris Upton, NE England

I will be visiting this website far more often to see how you are! If you encourage just one cancer patient to stay positive then you have done the most fantastic job! Good luck xxx
Emily, England

I am a firm believer that the path through life is charted by no-one - there is no sense, rhyme or reason to where tragedy strikes. However, I do know that in all of us are the courage, belief and determination needed to endure and overcome the difficult times that may befall us. Ivan, the courage you show is inspirational. If ever I want to read through to a successful outcome, this is the time. I will read on until the day you write that you can look at you scans and say "I beat it." Good luck.
Jon Hague, USA

Thank you for this account, it puts many things into perspective.
John Foster, Scotland

Physicians have to remember three things! Never underestimate the power of God, love and the human spirit! Good luck Ivan, I will be praying for you and your family! Keep up the fight. You can overcome!!
Lily, Oregon, USA

You are unique and miracles can happen!
Vision, UK
I think you made a right decision not to browse medical websites for the time being. Take no notice of the statistics because you are unique and miracles can happen! Prayers and healing thoughts sent your way! Blessings,
Vision, UK

I chanced upon your article, Ivan. I felt humbled reading your matter-of-fact account of your experiences - I can only hope that I would be as brave and positive as you if I found myself in your position. Good luck!
Chris, England

Every article like yours adds one more piece to the knowledge available to all cancer sufferers. Good luck and best wishes to you and all those being treated for this disease which will one day be conquered.
John Atkinson, UK

Open up to the liberating experience of fighting disease
Harry, England
Three bouts of cancer over the last five years have served to change my life... exclusively for the better and in so many ways. I changed my job, changed my home, married my girl, started fostering rescue dogs, did whatever I could to make life better right now! I take heart reading your column and seeing that you too have become fabulously positive and focused on the moment!

I've been privileged to buoy up a number of friends who have subsequently been diagnosed and without exception thay have been able to open up to the almost liberating experience of fighting the disease head on and savouring everything with a renewed intensity. Good on you, matey, and long may your optimism and determination keep you and your loved ones thriving. Keep winning!
Harry, England

Good luck Ivan. Superb reading. It helps others to get and keep things in perspective.
Dave - DPS, England

There is nothing I can possibly say to make your days more enjoyable but I think you have found through this tumour what we are all faced with but most choose to ignore: our own mortality. We have only the now and we are all working to a limited timescale. I hope your words inspire others to live the way they really want to.
Karl Roche, UK

I am now as healthy as a bean
David, England
I am 30 now and was diagnosed with malignant tumours about six years ago. Over the course of a year I had a series of operations and then was put on a year of chemo. At the time I was given a 50/50 chance of making it through. I am now as healthy as a bean and although I still go for annual check-ups. Keep a positive attitude, I have done a lot of web-based research about cancer and it seems that those with a positive attitude against fighting this irritating disease show a much better chance of beating it than those that are dejected and depressed.
David, England

You should only think positively and whether 98% of patients with your condition survive, or only 2% is unimportant, because for you it will be either 100% or 0%.
Ian, Poland, Ex UK

Try and keep your spirits high Ivan. I really admire your courage sharing your experience with others. I like many will be praying for you. Best wishes,
Mark Gaston, UK

I read your piece for the first time this morning. Although I am not suffering in the way you are, I had already decided that if I was ever diagnosed with cancer I would forego the destructive treatments offered by the NHS: radiotherapy, chemotherapy and surgery all seem to rate badly as far as "cures" go. And then I came by a book called "Cancer - Dying to Find a Cure", which offers (to my mind) a sensible, feasible alternative. I would recommend the book, even if you spurn the advice. I would be especially interested to hear your wife's opinion considering her profession.
Richard Clark, United Kingdom

God has a bigger plan for all of us, and during the time you are resting, talk to God and ask for complete healing, ask, ask and ask. We do not burden God by asking. You sound like the most amazing person. Continue to keep your spirits high. Yes kill the tumour by visualising, this definitely works. Deepak Chopra's and Caroline Myss's books talk about visualisation; it's a powerful tool. Keep killing the tumour with your mind's eye. God is with you, and I am praying from my heart for you.
Nassim Jaffer, Canada

The Old Man Upstairs has got to listen
Philip, England
Keep up the good work - your bravery in going public must help other sufferers, but more so their loved ones who feel unable to discuss what is going on. Your candid approach has helped me to understand more fully what a relative of mine went through in similar circumstances. Each time I come on the BBC site (usually twice a day) you are in my thoughts, as no doubt you are for many thousands of others. With all these good wishes the Old Man Upstairs has got to listen. Good luck to you.
Philip, England

I am reading your column regularly and want you to know you are in my thoughts (and prayers, though I'm not a religious person). I agree with Philip when he says that with everyone rooting for you, you can only thrive. Your writing is genuinely inspirational. All the best.
Sarah, UK




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