Symptoms & diagnosis
I was diagnosed with chronic lymphocytic leukaemia in December 2003. I was a 53 year old girl who still did not know what she wanted to be when she grew up, but also my life was sort of planned out before me.
I had had a minor gynaecological operation and felt extremely tired and really unwell for too long afterwards. I had blood tests and the gynaecologist said to me ‘I have never had to tell anyone this before but you have chronic lymphocytic leukaemia and I cannot do anything more for you, you had better see your GP’ and I was outside his office door before I knew it.
I was just in complete shock. The only times I had heard about leukaemia before that was on television when someone was dying from it. All I could see was the word chronic with great big zig zags round it. Chronic also equalled terminal in my mind.
My understanding was if the gynaecologist could not do anything more for me then my days were numbered. I was also completely obsessed trying to remember the words that the gynaecologist had diagnosed me with.
I got home in a complete daze with the world going on around me and my mind making lists of how to put my affairs in order and I just burst into tears when I saw my husband.
My husband could not really take in what I was telling him and just went into complete denial.
I looked on the internet and in those days medical sites gave someone with CLL a life expectancy of 5-10 years and I thought if that is what the sites said it must be right.
Finding support & information
My husband and I saw my GP but she could not tell me much apart from ordering more blood tests, but she did refer me to what now is now the Bloodwise web site.
That was the best thing she could have done, There I found helpful, practical information on CLL, information on support options, the research Bloodwise funds, current types of treatment and that was so reassuring. I felt I was not the only one in the world with CLL and there was Bloodwise that would give me support.
I was still in complete shock and really anxious, I felt that I was in a bubble and going through the motions of life. I had a weird sensation that I wanted to pull the leukaemia out of me.
Work just could not understand, it was not their fault really I had worked there for 15 years and never had a day off sick, they just could not take me being vulnerable.
I had always been seen as the strong, capable, carer and so friends tended to see me as their friend with cancer.
Watch and Wait
After further blood tests my haematology consultant put me on ‘watch and wait’ with quarterly blood tests. Again Bloodwise came to the rescue with its informative leaflet explaining watch and wait.
It took me a very long while for my shock and anxieties to start to subside and I can remember how anxious I was and especially every time I had blood tests taken.
Not feeling well slowly subsided but the fatigue continued. For the next 5 years my life consisted of work, running the home and sleeping. My bosses said to others that they supported me but it was without listening to me. Perhaps I did not explain myself well enough, in the end it was a win - win situation and my job was made redundant.
Every day I realise what a lucky girl I am to continue to be on watch and wait and I am managing and really enjoying and appreciating my life in a way I would not have done if I had not got CLL. Now I really want to give something back to Bloodwise and others with blood cancer and their families as Bloodwise has given so much to me.
Becoming a Bloodwise Ambassador
I feel extremely honoured to have been asked to be a Bloodwise ambassador. For me being a Bloodwise ambassador is a very great honour and also an exciting responsibility which I take very seriously.
I am a 66 yr old girl who has chronic lymphocytic leukaemia. I have been very fortunate and I have been on watch and wait for over 12 yrs.
Not everyone is so lucky as blood cancer is the third biggest cancer killer and the fifth most common type of cancer in the UK.
Despite its prevalance public awareness about blood cancer and very few people no the signs and symptoms to look out for.
I think the ambassador role is ever evolving, but for me its about raising awareness about blood cancer and Bloodwise and making sure that the 230,000 others currently living with a blood cancer have a voice.
Although I get fatigue my current health and the way I manage it means I am able to give something back to Bloodwise, who have given so much to me.
I think people are Bloodwise ambassadors in different ways, some people are brilliant, often innovative fundraisers, some people have sporting prowess and I think I am a people person and I want to represent Bloodwise, people with blood cancers and their families in that way.
I also really want to fly the flag for Bloodwise because they do such brilliant work and especially for their fundraising which enables all the vital research they fund.
So far I have attended meetings as a person with a blood cancer, I have piloted and given feedback on a new website and their information leaflets as well as attending a Bloodwise and yoga collaboration event.
Being on watch and wait I have realised that, with a compromised immune system, I need to ensure I lead a healthy lifestyle and diet to keep me as fit as possible.
The benefits of yoga and pilates
I also have osteoporosis and I have found yoga and pilates really helps with both conditions, it also helps with my fatigue.
Therefore I was especially pleased to attend a collaboration event between Bloodwise and Yoogaia, an interactive online yoga studio, who are going to make a sign up donation to Bloodwise.
A Yoogaia instructor took myself, others and several Bloodwise employees through a session. There was a reporter participating and a photographer there taking photos of us all from every angle.
I felt really invigorated after the session, it made me more conscious of my breathing properly, my use of my core muscles, my balance and I think my general fitness.
There was also a nutritionalist there who discussed my diet choices and I really realise now that I really am what I eat. There were also healthy smoothies for us to sample, which were really scrummy.
I was then interviewed by the reporter and I explained what it was like to be diagnosed and live with a blood cancer and how exercise and diet helps with my condition.
I had a brilliant time and I feel really thankful and lucky to be a Bloodwise ambassador and represent Bloodwise, everyone with a blood cancer and their families.
Find out more about chronic lymphocytic leukaemia
Read more about our partnership with Yoogaia