Katie R
Posted by

8 Years Today

Katie R
Posted by
19 Jan 2015

Words. I have so many a lot of the time. No doubt some would wish I didn't. But today I don't seem to have any.

I had phrases pop into my mind yesterday and on Saturday but I didn't want to write then. I wanted to write today. But I seem to have lost my words.

I feel ok today. I had a very low and bleak 24 hours from Saturday afternoon to Sunday lunch time. Lots of shoulder heaving, not being able to breathe sobs. But today. They have gone.

Maybe the lead up is worse than the day itself? I don't know. Last week or the week before someone said it was offensive that I have a cancerversary. That I am being offensive because they have lost so many people because of cancer. Their problem not mine but it has stuck with me.

Ever aware of others. Not wanting to upset. Always thinking about how they feel. I also know that I know some who would love to be in my situation. Managed. Not having to worry about the next round of chemo or the next scan. And then I feel selfish.

Why should I complain? 2 pills a day. No food for an hour. And then I can carry on. Yes I have good days and bad. But then who doesn't. At the hospital every 8 weeks or so for a check up. All is fine. It's all managed. Still so desperate to come off treatment and to get my life back.

I've been on chemotherapy for nearly a third of my life.

I do celebrate today. Nothing could have prepared me for that phone call. I remember what I was wearing. Super noodles cooking. And then turned off. Never eaten.

But I wouldn't change it.

So few know how they are loved. What amazing friends and family they have. But I am shown all the time and especially today. So I celebrate. I remember the good. I surround myself with love.

If I didn't I don't know what I would do. I can't ignore today. Not whilst it's still a massive part of my life.

So for those who find me keeping happy and smiling offensive on my cancerversary. I do actually have a simple 'sod off' for you.

I lost my life 8 years ago but gained a new one. I do have to be strong and tough and carry on. And I do. Because of all the good. There is so much. I wouldn't change it.

So today on my 8th cancerversary I ask you to find something that makes you smile and treasure it. Life is too short not to.

With love and hope, so much hope,



Hi Katie,

First things first congratulations on reaching another cancerversary!

I can totally understand why some people might be sensitive around the concept of survivorship however at the same time you've no reason to feel guilty or bad for wanting to celebrate the fact that you're still here! The fact that others have not been so fortunate is not your fault - it's no one's fault - and what we should focus our energies on is funding the research to improve and develp the treatments that will stop people from dying from blood cancer.

I think it's only right to celebrate with the loved ones that have helped support you over the years and get you to where you are today. I celebrate my transplant day and find that it's always a time of reflection as much as it is a time for celebration and it seems as if this is the case for you too.

There's absolutely nothing wrong in this either. Thank you as always for your refreshing honesty and have a great day.  


Hi Katie

Thank you so much for so honestly and touchingly sharing your thoughts on what is such a significant date. I think you should celebrate and appreciate the day as you do, and let yourself be your first prority.


Congratulations, and thanks again - you may have found it hard to find the words, but as it turns out I think you found just the right ones. 





I have been flicking over these patient's stories and having read yours I can understand very well your thinking and feelings about having CML and surviving.
I was diagnosed in December 2000, just before Christmas. I had been feeling weak and easily tired for months ; a nasty lasting pain in my left side ; subject to niggling infections that persisted too long to be normal but I was running a farm and we had a young family (Edward the youngest was only four months) - I couldn't possibly be ill !
More fool me - the pain brought me to my knees one afternoon in the yard and I had to get back indoors as best as I could.
Only now did I relent to my wife, Elaine's demands and agreed only to be driven to the local Health Centre in Ballymoney (Co Antrim)
I didn't succeed in keeping this "low key" and was sent directly to Coleraine Hospital ten miles away with (I learned later) a massively swollen spleen which they feared would rupture.
(So that is what the pain was.)

It was the next morning when I was surprised to be spoken to (as I lay on my back on morphine) by a Doctor who introduced himself as a Consultant Haematologist. I was initially confused as I had been told I probably/maybe had an infection in my spleen - hence the IV antibiotic drip.
However on admission the previous night to A&E the junior Doctor had told my wife and I that I was showing a WBC of over 120 as well as the huge spleen. What I thought was that this must be in response to the infection - of course.
My wife Elaine is a qualifed nurse (then of 15 years standing) and she knew something was very wrong but she said nothing. In those pre internet days she went home later to read up her (old) text books which confirmed her fears and I always remember the phrase (which I later read) which defined leukaemia as " an invariably fatal disease."

The consultant - Dr Burnside - told me that morning, out of the blue, that he was "fairly certain I was suffering from a very serious condition - a form of Leukaemia."
I was sure that was it. - I was going to die. I would never see my children grow up ( Sarah was 9, Daniel was almost 7, John was 5 and Edward was 4 months)
I was sent two days later to the Royal Victoria Hospital in Belfast where once I was bedded and put on the electrophoresis machine, I saw the slight figure of Dr Mary Frances McMullin at my bedside.
Well she introduced herself as another Consultant Haematologist and she explained this was Chronic Myeloid Leukaemia.
I asked "what is the bottom line?" and she told me from where I was, I could expect an average survival of perhaps three or four years BUT that huge advances were being made in the treatment of CML in the USA (Dr Brian Druker !) and she aimed to get me on a drug trial which was probably my best hope (I am an only child.)
Long story - but in June 2001 Dr McMullin put me on an arm of the PISCES trial which was being run by Dr Steve O'Brien in Newcastle.
This involved a weekly injection of Interferon ( which I found horrible) combined with 200mg per day of a strange substance called STI 571.
This latter chemical miracle is better known now as GLIVEC.

There were only two people in Northern Ireland on PISCES. The other patient was a lovely young lady (and mother of a young family) called Louise C. She did not respond well to the trial drugs and as my Ph +ve levels eventually came down, hers did not. She was however eligible for a BM transplant from one of her brothers and it was decided that was the answer for her.
Dr McMullin persevered, as did I, with this weekly concoction but I eventually was taken off PISCES in October 2001 as I was not getting near completely Ph+ clear.
Dr McMullin then doubled the STI 571 to 400mg per day and after Christmas I achieved complete cytogenic remission !

STI 571 went on to be licensed in the UK as Glivec I think in 2002 (?)

To finish this very long saga , fourteen years later I am still alive and quite well. My friend Louise tragically relapsed a couple of years after her BM donation and she died. That could so easily have been me - had Glivec not become available.

Dr McMullin is now Prof McMullin at Belfast City Hospital and the Queen's University of Belfast. I still attend her Haematology clicnic every two months and I still have to take Glivec.

The conclusion to this story is that I do suffer from side effects from Glivec. I have have a persistent feeling of fatigue and I tire very easily, I become breathless on exertion, have stomach upset due to the drug, often feel rather nauseous and I find my sleep patterns are disturbed.

The point is that I empathize completely with you Katie in how you feel that life cannot be "normal" again and how the imposition of taking this drug compomises you day to day life. I think these thoughts most days.

However when I feel sorry for myself - and believe me I do some days - I only have to think of my friend and co-trialist on Glivec, Louise and all the others who suffered CML and died, before Imatinib became a part of Haematological reality.

We have to be thankful for the huge advances that have been made in the treatment of CML in recent years and that will contniue to be made.

That still doesn`t stop me wishing I had never come across IT !


Hi Chris

Thank you so much for sharing your story  with us. I am very happy to hear you are doing well, and had such a positive response with Glivec although your side effects do sound difficult at times. It's completely natural and understandable that you will have mixed feelings about the last 14 years, and at times feel less positive, and that's all OK and normal to feel :)

I am so sorry to hear about your friend Louise, that's terribly sad. It's important to remember those who have not survived, whilst looking to the future and remaining hopeful that one day, together, we will beat blood cancer for good.

I am sure lots of other people would find your experiences and perspective interesting and inspiring. It's completely up to you of course but it would begreat if you wanted to copy and paste your response into a new blog, I am sure it would be well read.

Thanks again and all the very best,




Thank you for your kind response. I would be happy to oblige but as my once young family have now flown the nest ,I need some technical advice - tell me how to go about it !