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Last Updated: Thursday, 26 August 2004, 13:03 GMT 14:03 UK
Tumour diary: Two years on
By Ivan Noble
BBC News Online science writer

Ivan Noble
BBC News Online science and technology writer Ivan Noble was diagnosed with a malignant brain tumour in August 2002.

Since then he has been sharing his experiences in an online diary.

I have been a cancer survivor now for two years.

On 29 August 2002 I found out I had a type of brain tumour called a high grade glioma.

As the uncomfortable young doctor who gave me the news put it, "There aren't any good brain tumours to have, but even if there were, yours wouldn't be one of them."

It did more than ruin a good August Bank Holiday which I should have spent at a wedding.

It turned my life and those of my family upside down.

Relief

Since then we have been through a lot.

My girlfriend became my wife and has shared joy and sorrow with me, always finding hope in the blackest of days.

I have tried to live with fear and not surrender to its quiet, corrosive, spirit-sapping power
My seven-month-old baby girl has become a fascinating, charming, hilarious and strong-willed two-and-a-half year old ("nearly three", she would prefer).

And after much soul searching, my wife and I took the decision over a year ago to try to have another child, now our five-week-old son.

My diagnosis was followed by a huge dose of radiotherapy.

We managed to get married before I moved on to four months of follow-on chemotherapy.

And after all that we had the blessed relief of knowing that I was in remission.

With my kind of problem, remissions do not tend to last for ever, and head problems came back all too quickly.

I had major brain surgery to remove the growing nastiness and implant a new form of chemotherapy drug.

I just made it out of the hospital in time for our first wedding anniversary.

'Teenage acne'

Three months later I was back under the knife to remove another lump of cancerous gunk from my head.

After that I thought I was on the way out, but six months have passed and I am doing very, very well, under the circumstances.

I cannot concentrate for long periods (but friends would say I never could).

I take someone with me when I go out unless I am going somewhere I am very familiar with.

I am partially-sighted, having lost my right field of vision to the tumour.

My hair will never be the same again.

I have put on lots of weight and rediscovered teenage acne as side effects of steroid medication.

I went through a phase of extreme agitation where I was a nuisance to myself and all and sundry.

And earlier this year I got myself as ready as I could to die.

'A target of years'

But six months after that last op I feel better than I have for a long time.

Maybe I have entered the second remission my cancer specialist told me he intended to give me.

I have learned not to think too much about the future.

I have tried to live with fear and not surrender to its quiet, corrosive, spirit-sapping power.

I have learned that even with a disease like mine, incurable but sometimes manageable, there are still times when things are getting better.

Today's happinesses create the momentum for tomorrow.

We have accumulated two years of survival from single days and weeks, all of which drew heavily on our strength and will.

I am so used to living in the short term now that I cannot begin to conceive in real terms of a life beyond the end of the year.

But the most optimistic of my doctors talks now of a "target of years".

I will do what I can to carry on piling up the days and weeks.

It is not easy, but I have learned how by now.

And I will have a quiet sniffle of relief and joy when I see "nearly three" become really three.

Please use the postform below to send your messages to Ivan.


Your messages:

My mum had 18 months from diagnosis until the end, but as she said, its quality not quantity of life, and no-one, even without illness, knows the day or the hour. Keep on keeping on Ivan, it aint over till you say it is.
Smith, England

I am filled with admiration for you and your family
Jean Horabin, England

Ivan, it was good to read your diary again and I am filled with admiration for you and your family. I myself have recovered from Breast Cancer and it will be three years at the beginning of September which have been sweet years for me I live like you from day to day and although I haven't got the same prognosis as yourself. I can never be sure if the cancer will come back again. Best wishes to you.
Jean Horabin, England

Ivan, I find your courage inspirational. I sadly lost my mum after she had a brave fight against cancer last year, and throughout that time, and after I have taken much strength from your own fight. I wish you well, and hope that you can take something from being so inspirational to us all.
Ian Turner, England

Hi Ivan, your diary should be essential reading to help all of us keep a proper perspective on our lives. Ten years ago my wife, now 57, was diagnosed with a nasty eye cancer. I will never forget the frozen moment of her diagnosis as it was delivered, wondering what the future would hold for her and our two young teenage daughters. She survives, 10 years on, blind in one eye, but full of the daily determination to live life to the full that you touch on in your diary. There are fighters and survivors of this disease - may you be one of them.
Jeremy Gibbins, Wales

Your approach to your condition is an inspiration and mirrors my wife's approach also
Steve Mascari, England

Ivan, this is the first time that I have read your story. I have suffered with a brain tumour and now my wife is battling breast cancer. I have seen both sides of the coin and can only wish you and your family find the strength to battle through this. Your approach to your condition is an inspiration and mirrors my wife's approach also. Best Wishes,
Steve Mascari, England

"a phase... when I was a nuisance to myself and all and sundry"
Ivan - thank you - I must remind myself of that phrase when I'm having one of my unreasonable spells! I just wish that you were not having to go through so much to have achieved that state of self analysis. I will be looking out for more gems from you.
Good Luck.
Barry Andrews, UK

You are in inspiration to us all. Your articles are very humbling to read. I will raise a glass to you tonight, and will do so next year, when nearly three is actually three.
Stephen McCullough, Northern Ireland

You're inspirational. You've shown that the battle is as much about living life as it is avoiding death. You will remain in our prayers...
SteveO, Scotland

You've put my life into perspective
Jacqui, UK
Your strength leaves me feeling humbled and very fortunate. I've been through, what I thought was, a difficult time recently, but you've put my life into perspective. I am with your doctor with regards to years; a spirit like yours will continue to overcome the obstacles put in front of you. Let us know when nearly three becomes really three so that we can all raise a celebratory glass with you.
Jacqui, UK

Hi Ivan, I just wanted to say congratulations on reaching your second anniversary. I hope that the days and weeks become months and hopefully years. I also hope that you get to see nearly three becoming really three and more. Best wishes to you and your family.
Christina, Scotland

Life is precious and equally fragile - thank you for making me stop and appreciate the fact. I hope your days are filled with light and love.
Rosemary Nightingale, Lanzarote, Spain

You are an amazing, amazing man. I have read your diary for over a year now and your courage and honesty continue to astound me. As I sit at work or home, feeling annoyed by my bad day (loads of work, long traffic jams etc), your diary reminds me of the elements of life that actually matter. Reading your comments make me, at the other end of my PC, feel emotionally raw so I can't imagine how you must feel at times. I continue to think of you and will happy and healthy vibes in you and your family's direction.
Rebecca Murray, UK

It is hard to find words to convey my absolute admiration and respect for the way you are dealing and living with this nightmare. From your darkest moments, you find light and humour. With our daily moans and groans you humble us all.
Val Oliver, England

I know how every milestone you reach is greeted in turn with delight and fear
Karen Mills, UK
Hi Ivan. Many congratulations on your anniversary. I am just coming up to my fourth anniversary and so I know how every milestone you reach is greeted in turn with delight and fear. Best wishes to your wife - every time I look at my husband and see the worry in his eyes I know what you and she are both going through.
Karen Mills, UK

I pray for years three, four and five etc for you. You are an inspiration to us all and I don't doubt your diaries have been a comfort to many people in similar circumstances. Take care.
Roz, Isle of Man

It doesn't seem that long since I read your first post, and I've read every one since. Your words always put things into perspective for me, and always make me do those things I've been putting off because there is always tomorrow. Tomorrow is something we all too often take for granted in society. All the best to you and your family, who I am sure are more than happy to put up with your occasional agitated states!
Greg Robson, UK

Keep it up Ivan! My father has been battling throat cancer for about 18 months, and I can appreciate what it is like for someone to live life in the short term, preferring to think of things on a day-by-day basis rather than to look too far ahead. Your diary entries are an absolute inspiration to me, and I look forward to each one. Keep piling up those days...
Niall, N Ireland

The courage and determination shown by Ivan is truly mind blowing and highlights all that is good in man kind and human nature. I have followed his story closely and have never failed to be moved by the extreme bravery he has always shown. God bless you, you are truly a fantastic example for people on how to cope with adversity and may you see really three become much more than three.
Dilwyn John Roberts, Wales, UK

I accidentally stumbled on your diary today. Your concise but explicit reflections really touched me. You also put things into perspective. I really hope you get to see nearly three become three.
Kat, Netherlands

I send all my best hopes and wishes for your future and that of your growing family. We recently buried my 17-year-old niece who had fought osteosarcoma for 18 months. Living that period of time felt like an eternity, but looking back it was such a short time and one which was full of hopes and shattered dreams. Everything that could go wrong did go wrong. She suffered tremendously through the horrendous treatment, always with such a gorgeous and infectious smile and such dignity and positive outlook. Life is not the same without her so I can only hope that you enjoy every second, as I'm sure you do. Best wishes.
Abigail Cooper, UK

Hey dude Keep it up - you are a legend.
C-J, UK

Dear Ivan, Several times I've stumbled across your diary over the last few months - I've consciously tried to avoid it. I couldn't this morning! It's kicked me in the teeth - we are about the same age yet your perspective on life has become so much more realistic than mine through sheer necessity. You have had to learn to live for the moment and accept realistic priorities because of your circumstances. I, by contrast am incredibly lucky not to have circumstances such as yours, have everything to live for but have begun to realise through reading your words what an ungrateful sod I really am. Thank you so much for being as brave as you are and sharing it publicly. As a result, today really is a new day for me that I will begin to appreciate.
With much gratitude,
Chris Butler, England




TUMOUR DIARY

Dec 2004 - Jan 2005
 
Aug - Nov 2004
 
May-July 2004
 
Apr 2004
 
Mar 2004
 
Feb 2004
 
Jan 2004
 
Nov/Dec 2003
 
April-August 2003
 
March 2003
 
February 2003
 
January 2003
 
December 2002
 
November 2002
 
October 2002
 
September 2002
 




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