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Last Updated: Friday, 5 December 2003, 10:11 GMT
Tumour diary: Interesting times
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.

Twelve days out of hospital now and my high spirits persist.

My wife and my mother have been reminding me that I have had a serious operation and should be taking it easy, but I cannot do it.
I feel really well and everyone keeps telling me how surprised they are that it has been such a quick recovery from the operation.

I was a bit nervous about seeing the surgeon for a follow up appointment on Tuesday, worried that he might have some lab results with nasty surprises.

But there was nothing to worry about. He told me to go and enjoy my Christmas and come back for a brain scan at the end of January to see how everything has settled down.

I am having a whale of a time at the moment, quite frankly.

Something interesting happens every day and I meet someone for lunch or tea every day.

No rest yet

My wife and my mother have been reminding me that I have had a serious operation and should be taking it easy, but I cannot do it.

Time is precious and I cannot sit at home reading a book and quietly sipping tea.

A time may come soon where shopping in town by myself and dropping in on friends at work is no longer possible.

If I am honest, I know that that time could come next year.

So I am afraid that rest is taking a back seat.

This weekend I am finishing the steroids I was taking to control the tumour.

That might calm me down a bit.

Back on the road

Of course I have started planning some trips, firstly up to Leeds to see my parents with my daughter, then to Wales with some old friends for three nights before Christmas.

We plan spending Christmas itself at home.

Our little girl will appreciate it this year, I think, now that she is nearly two.

Last year we did not have a tree or anything but I think this year it is a must.

Then we are planning to go to Bavaria to spend New Year with two sets of German friends and with luck see some snow.

The medical facts

I have been prompted by an e-mail from someone who read this diary recently to think again about the decision I originally took last year not to reveal the details of my diagnosis.

I decided to keep it to myself because I was so frightened when I read about what had happened to other people that I thought that I did not want to be the cause of such pain to anyone else.

Now I think that I was wrong and that it would help people affected by tumours to know what I have if they want to judge the severity of what I have.

So here it is: I have a grade 4 glioma, otherwise known as glioblastoma multiforme, in my left occipital region (visual cortex).

It was drained of fluid during a burrhole biopsy in August 2002, irradiated with 60 Gray and then I had four cycles of Temozolomide, all of which left me in remission until October 2003, when I was made aware that I needed surgical removal of the tumour and a newly-grown fluid cyst.

I had a craniotomy to achieve that, during which the surgeon inserted Gliadel wafers, a mechanism for delivering powerful chemotherapy directly to the brain tissue.

It really is quite remarkable what can be done even for someone with the highest grade of tumour, like me.

Fifteen months after diagnosis I am walking around perfectly normally with a smile on my face and the firm conviction that there is plenty of mileage in me yet.

Your messages to Ivan:

Ivan, you are a real encouragement to all those people who are living with life threatening illnesses. Your positive attitude to life is inspirational. I hope you and your family have a wonderful Christmas and best wishes for the New Year.
Annie Jones, England

I have read this diary for the first time today and have been profoundly touched, you are truly an inspiration and your concern for the feelings of others is heartfelt and genuine may Christmas be a wonderful time for you and your family and I wish you a very happy new year
Gillian Usher, England

I've been sitting on the sofa a little too much lately and you remind me that every day is precious
Kris, UK
You make it really difficult for people who have their health to feel sorry for themselves! I've been sitting on the sofa a little too much lately and you remind me that every day is precious.
Kris, UK

I have followed your experience with hope and I am so glad for you and your family that things are looking good. I have a very close friend who was diagnosed with a similar thing nearly a year ago and we have all found reading your experiences a help and support. I hope things continue to get better every day and hope you and your family have the best Christmas yet and all the best for 2004.
Sarah, UK

Ivan I am glad you have decided to share your diagnosis. I feel it helps others in the same situation to understand and also gives them hope. I understand some of your thoughts as my husband had a GBM too (aged 33). Live your life to the full travel and enjoy everything. Have a wonderful Christmas and New Year. Most of all be happy every day. Prayers and best wishes
Jeanie Venis, UK

Ivan, I am so glad that you are feeling well, and full of energy. I have been following your story through the BBC web page for some months now, and always felt the need to write. You have demonstrated remarkable courage throughout this difficult time. You deserve lots of credit for the way you've handled this. I don't know that I would be capable of doing likewise.
Being a father of 2, I know Xmas will be really special, and now especially since (hopefully) the prognosis is excellent. Merry christmas to you and your family - a peaceful, healthy, and happy new year also. Continue to be well. John
John Montague, Scotland, UK

Ivan, I cannot say what a lift I had by reading your latest diary (and I am a healthy person!). Your words always remind me to enjoy the great things I have in my life, today.... now! You deserve to have a wonderful Christmas with your family. Keep writing and my best wishes to you all.
Ian Hornby, GB

Ivan, your diary has been an inspiration to us all. You have taught me to live life to the full and not take it for granted. I wish you and your family a wonderful Christmas and all the best wishes and news in 2004.
Nicola, UK

I am so incredibly impressed by the "can do" approach to your every day life
Jonathan Chapman, UK
Ivan, I have no experiences to share, but suffice to say, I am so incredibly impressed by the "can do" approach to your every day life. Quite simply your persistence and fortitude put so much into perspective, that I thank for sharing your life and challenges with us all. I look forward to the next update, and wish you a speedy recovery, which must surely come.
Jonathan Chapman, UK

Lots of love to you Ivan, and to your family. Ivan Illich said "enjoy your living and suffer your destiny". Enjoy Enjoy Enjoy. Merry Christmas and Happy Holidays!
Nati, San Juan, Puerto Rico

I just wanted to pass on my admiration for the brave, pragmatic, honest, and public way you have dealt with your condition and your recent relapse. It's a reminder to us all that there are stories of individual courage and strength in the face of adversity going on all around us, most of which we never get to hear about. I hope you are able to see out many more Christmases and see in many more New Years.
Chris Power, UK

Mate! You're a legend! It's brilliant to hear you in such great spirits, and for the best reasons! Have a lovely Christmas
Greg Roughan, NZ / UK

If you're coming to Wales pack plenty of woolies and wellies
Tessa Hughes, Wales
Ivan, Having read your diary, I just wanted to wish you well with your treatment and I hope that you and your family have a really special and fulfilling Christmas and New Year. I'm sure your litte girl's excitement will make it more enjoyable this year and if you're coming to Wales pack plenty of woolies and wellies.
Tessa Hughes, Wales

I too feel that it's the right thing to do in sharing your diagnosis. It does bring hope to others and shows that there are wonderful things going on in the medical world that we should be proud of. Have a wonderful Christmas and New Year.
Josie Miller, UK

Seize the day Ivan and good luck to you. Thank you for being so frank and sharing everything, the full facts may scare some but there are also those who will be heartened or relieved to know all your experiences. When my husband had cancer, we looked for all the facts we could find, even if they were scary, we wanted to know. So glad you have come through again, stay positive, enjoy the season with friends and family - live!
Penny Brayfield, USA(ex.UK)


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