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Last Updated: Friday, 15 August, 2003, 22:10 GMT 23:10 UK
Tumour diary: Signing off
By Ivan Noble
BBC News Online science writer

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

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

I was not in very good shape at this time last year.

I was having headaches so strong that they made me wake up in the morning and throw up.

By the end of the week, I was in hospital and within a day knew that there was a serious problem inside my head.

A few more days and some exploratory brain surgery later, I was told the crushing news that I had a highly malignant brain tumour which would not benefit from surgery.

I came home before August was out, paralysed by shock, unable to concentrate and haunted by the fear of death.

It all seems so long ago now.

In the meantime I have had aggressive radiotherapy with follow-up chemotherapy and the tumour is apparently at bay.

I have grappled to find a way of carrying on.

Facing the truth

At first I was so scared that I did not want to know anything but the bare minimum about my condition. I was terrified that someone would tell me that I was bound to die.

But it was impossible to bury my head in the sand for ever, and the truth came out in dribs and drabs.

Once I discovered how poor the statistical chances of surviving three or even five years are, it came as a strange comfort.

I had imagined them to be even worse. The fact is that though they are terrifying, they are not zero, and that is all that matters. If one person in 12 survives, then I will be the one who does.

With the help of my wife, my little 18-month-old daughter and some professionals, I have slowly learned to live again.

Fear and joy

It is not easy to live a happy life in the face of such dreadful uncertainty, but it is possible.

Our little girl has gone from a babe in arms to an opinionated, strong-willed person in her own right, sure of what she wants and rapidly developing the ability to express it.

And I have finally made my peace with the idea that I simply do not know what the future holds for me, and that the only thing I can make a good or bad job of is the present.

At the moment I am working full-time, relishing London's long days and summer weather, and looking forward to a day with my family at the seaside tomorrow.

I began writing about what happened to me almost as soon as I came out of hospital, at first every week and then, after the first good news about my treatment, every month.

Looking back I can come up with reasons why I was so keen to write this column, but at the time it was more instinct that made me want to do it - an urge to keep going and to try to make something good come out of something bad.

Now I am going to stop writing.

I hope I managed to accomplish what I set out to do.

There have been many kind e-mails from people who have said that what I have written has helped them understand what people close to them are going through.

Whatever the future holds, my cancer diagnosis has not meant the end of my life.

What I need to do now is quietly to carry on living, in hope and fear, to be a good husband and father, and to take the greatest of pleasure in all life still has to offer.

Your e-mails to Ivan:

Ivan, I wish you continued improved health. Many around the world share your pain. Let your statement be a life rule for everyone "that the only thing I can make a good or bad job of is the present".
Stanley, USA

You are not lucky but you love your life
Dr Bastian TS, India
Being a pathologist I had over many years seen and experienced from my patients, the will to survive. A positive thinking, at times of disease has great influence on the treatment. I must say you are not lucky but you survive because you had good treatment, you love your life to the core and you have a right attitude in life. Despair and loss of hope are the greatest drawbacks in any serious disease. May you overcome all problems and I sincerely express my love to your family.
Dr Bastian TS, India

Dear Ivan, I have nothing unique to say other than that I wish you and your family great happiness and a bright future.
Ross Tarara, USA

All the best for the future. Enjoy paddling in the sea with you little girl-hope you have many more chances.
Hannah Williams, UK

Makes us all wonder if we really live our lives to the fullest, live every day as if our days were numbered. Most of all let's not sweat the small stuff. It's courage and attitude that keeps us healthy, I believe, so given your spirit and strength you'll have a bright and long, long future ahead of you!
Klaus, Los Angeles,USA

I am deeply grateful for the sharing your experiences
James Lovette-Black RN, MA, USA
As a man suffering with disabling chronic pain and as an RN of 25 years, I am deeply grateful for the sharing your experiences. They will be invaluable to others who have similar diagnoses or other conditions, as people relate to your challenges. Thank you so very much. May you experience love, a fulfilling and interesting life, and healing.
James Lovette-Black RN, MA, USA

Dear Ivan, you made me cry and laugh with your column. I will miss it, but totally respect your decision to stop. I wish you and your family every best thought for the future and thank you for such an inspirational read every month.
Alison Owen, UK

Behind the pages there is a silent army wishing you well. Enjoy the seaside.
Mark Strevens, UK

A life well-lived, whatever its length, is an accomplishment in itself. You are to be commended for not putting yours "on hold" as you await the outcome of your medical therapy. As you enjoy your career, your family, your friends, the very world around you, may you continue to contribute to everyone in some way and allow them to do the same for you. The peace you display in your writing was hard-won, to be sure, but admirable by all who will observe it. My very best wishes for a long and very full life.
Drucilla Dumas, USA

Dear Ivan, You have been an inspiration. I appreciate your honesty and courage. Stay strong as always. I'll miss your diary, but you and yours will always be in my thoughts. Thanks for sharing! Best wishes,
Roopa, USA

A courageous and inspirational piece of writing which instilled an incredible sense of perspective in me. Thanks for allowing us to share your thoughts and feelings over the last few months and the best of luck to you and your young family.
Steve Tate, UK, London

You are a truly strong man from whom others can learn
Sian Watson, England
Ivan, I've written to you on a couple of occasions because I really felt for you and your family and secondly to give you hope because my husband has a rare brain disorder which rocked us nearly 4 years ago; from which we are still dealing. At the time I first wrote, you were dealing with the overwhelming fear of it all and I'm extremely pleased to see that you came through that. Although I will be sorry not to read your columns any longer I understand that you have to internally ingest it all and not share it with everyone. It is another phase of dealing with it. I don't know you, other than through email but I'm intensely proud of your resilience, serenity and strength. You are a truly strong man from whom others can learn. My sincerest best wishes for you and your family for a long and happy lifetime. It has been a privilege to know you. Take care
Sian Watson, England

As the parent of a 28 year old son living at home, who was diagnosed in February 2003 as having Castleman Disease (a virulent disease of the Lymphatic system) I understand only too well the shock that has hit you and your family coping with Chemotherapy and it's side effects are not pleasant for all concerned. I applaud you for your outlook of getting on with life. As the saying goes life is for living and is not a rehearsal. May you go on and thrive and enjoy life to the full. Medical Science is improving by leaps and bounds but as humans we are all individuals therefore diagnosis can never be exact. Glad to hear you the one in twelve. Our son is being helped by a new drug by Roche called Retuxomab. The Americans refer to it as Vitamin "R" it's uses are so widespread. Has your specialist got to know about it? It will be passed by N.I.C.E. for general use next month. I look forward to reading your diary.
Keith H Kennils, UK Newcastle upon Tyne

I wish you, your wife and daughter every health and happiness for many years to come. Your account of the last year has been remarkable for its honesty. And those that have followed you through it are better for it. I'll be giving you a thought every now and again.
Brendan, Ireland

Please keep enjoying every single extra day you've got
Lien Gyles, UK
Dear Ivan,
When I started reading your diary last year, I kept my fingers crossed along with everyone else and hoped for a good outcome. This may sound strange, but I wanted you to know how lucky you were to get the headaches, the quick diagnosis and the treatment. My mother died of a brain tumour in April. It was completely unexpected: she'd had no headaches, just vague symptoms of lack of concentration and confusion which were blamed on 'hormones'. She was rushed to hospital after she collapsed, where they finally discovered a massive and very aggressive tumour - she never regained consciousness and died a few hours later. She was only 63 and about to become a grandmother for the first time (my baby's due in two weeks). Please keep enjoying every single extra day you've got. All the best for the future.
Lien Gyles, UK

Ivan, I too, like many others, have read your column every week and willed you with each new offering, to write that you are feeling better and that the prognosis was improving. Your strength and determination is amazing, and you have been an absolute inspiration to me. I wish you all the very best for the future with your wife and little girl. Take care of them and yourself.
Lisa, UK

You have given me such hope and positive thinking on the bad days having been through a similar experience with breast cancer, you learn to hold on to each day and enjoy. Thank you and best wishes for the future.
Sue Blackman, UK

I have been reading your diaries all along and they have been amazing. I just want to say how much your story has moved me and how glad I am to see you charging into the future. Have a long and wonderful life.
Isabel, UK

Your courage and strength in the face of fear and adversity do you great credit
Ben, UK
Your courage and strength in the face of fear and adversity do you great credit. It shows how life cannot ever really be controlled. Just planned for and adapted to. I hope that your experiences during your illness will influence and enrich your life and your legacy. Not destroy it. Good luck.
Ben, UK

Great deeds come from great adversity. Enjoy your life, your family and remain strong. Positive thoughts are a remarkable healer.
Stuart Cater, England

All the every best to you and your family for the future. Your story has been a reminder that none of us are guaranteed anything in this life so we must live each day as it comes, love a great deal and to make the best of everything we have. I hope you have a much longer life than you might expect but a happy and fulfilling one however long it turns out to be.
Jane, UK

I felt a sadness when I read that you were ending your diaries. Perhaps you could at least keep us updated every six months? I have prayed for you and will continue to and think of you. It is hard to put into words what you have given me and I'm sure may others. Good luck and God bless you and your family.
Colin K, UK

Good Luck. Have fun at the sea side!
Peter Bourne, UK
Thank you for sharing your journey. As many of the comments have said - you are truly a brave man - and an inspiration. You were diagnosed at the same time as my wife's mother (she had stomach cancer). Its a horrible time. But she has also had treatment, responded well and is now well on the way to recovery also. Reading how you and your family were coping really helped during this time. Good Luck. Have fun at the sea side!
Peter Bourne, UK

Ivan - good luck. Like you, I am a cancer sufferer, and doing all I can to get on with life, regardless. It's amazing how one's priorities suddenly change when you realise you might not have all that much time left - and you start to value even the rainiest day!
Hilary Dibble, UK

Ivan, as someone who went through the terrifying ordeal of neurosurgery to remove a non-malignant brain tumour at the age of 13, as a 28 year old now, I admire your courage and outlook on the life you share with your family today. Wishing you truly all the best for the future and enjoy everyday for what it can bring. Best wishes.
James, UK

Your writing has always touched my heart
Felicity Warner, UK
I am a health writer and am privileged to share many people's experiences but your writing has always touched my heart and I am sure it has instilled optimism and courage in many others , good luck and many blessings to you and your family
Felicity Warner, Daily Express, UK

I think you have been and are, extremely brave. I have been lucky not to have been seriously ill - if I ever am, I shall use people such as yourself to help me find the courage I would need. I wish you, your wife and your daughter a long and happy future.
Paula Lawrence, Great Britain

I will miss you so much. I really feel that I have gotten to know a person who has such fire and courage. You have given me a great insight into the thought processes and emotions which go on when you are faced with the worst. Best wishes to you and your lovely family. I hope all goes well. You are an inspiration.
Tracy Owen, UK

Glad to hear your doing so well Ivan. Having been going through a similar situation myself over the past 12 months, I can completely understand your desire to stop the Diary. It is time to move on and live your life and in some ways try to put this behind you. Let me just say that your diary has been a tremendous source of comfort and inspiration for both my self and my family. We all wish you the best of luck and a long and happy life.
Nick, UK

I, and others, have been touched by your frankness and your strength in adversity
Ross Sharp, USA
Your journal has been both touching and inspiring. Throughout your diagnosis and treatment, you have not swerved from your goal - to live your life to the full. I, and others, have been touched by your frankness and your strength in adversity. May you, and your family, enjoy the life you richly deserve.
Ross Sharp, USA (ex UK)

My niece was diagnosed 4 years ago. She is now 22. At the time she had some treatment but decided herself to discontinue it. She still has lots of problems but is now learning to drive and living life to the full. You will be ok.
Helen Joyce, Republic of Ireland

Ivan, along with all cancer sufferers and survivors you are amazing and over the past year you have offered so much support and strength to everyone - for that I salute you. Wishing you health and happiness for the future.
Sarah Waby, UK

You sir, are an inspiration to us all. I could never cope as well as you have (and I pray I'll never have to). I'm sure many people have been able to draw great strength from your example. I hope everything goes well for you and your family, for a very long time to come.
Brian Pemberton, UK

It sounds like a healthy move to stop writing now and not be defined by your diagnosis.
Pete Black, UK
Ivan, I have been very moved by your diaries and wish you all the best. It sounds like a healthy move to stop writing now and not be defined by your diagnosis. We none of us know when the curtain will fall for us and in the words of Winston Churchill all we can do is "keep buggering on". Good luck and thanks.
Pete Black, UK

Ivan, for the past year you have never been too far from my thoughts and I will think of you again, many times, in the future - always in the hope that you are well and happy. I agree that you should move on with a "normal" life and stop writing this diary, but I will miss it and you. Much love to you and your family from me and mine. Justine.
Justine Nicholson, Scotland

I will be thinking of you, and wishing you all the best. I have been reading your writings from the beginning, and your determination and fighting spirit gave me great comfort. My friend also had a fighting spirit, but at 35 she had to succumb to the disease, and it was a great shock to all of us. She looks after me from wherever she is now, and she will look after you too. With my best wishes for your future. Milla.
Milla, UK

My husband was diagnosed with a brain tumour in 1979 just before starting university. He went on to get a 2.1. He had various bouts of illness and had radiotherapy. Two years later we were told this would probably mean we could not have children. As we had never realised that we had at that point a six-month-old - proving the doctors wrong again. Adrian died in 1996 nearly 20 years after the original diagnoses and after numerous times of being told this was it. Adrian lived life to the full as I am sure you will.
Helen Hope, UK

I'll miss your diaries Ivan. I wish you all the best; be well and good luck. Thanks for sharing.
Dina, UK

My heart goes out to you. You are courageous, strong and inspirational. I wish you all the very best.
M Kestrel, UK

Well done. And thank you.
Stewart Holden, UK


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