Katie R

Katie was diagnosed with chronic myeloid leukaemia on Friday 19th January 2007, whilst studying History of Art at the University of Edinburgh aged 22. To date, she has lived with blood cancer for just over 11 years. Katie is rare with both her diagnosis - most diagnosed with CML are male and over 40, and her age at diagnosis. Anyone diagnosed with cancer in the UK aged between 16-24 as a teenage young adult (TYA) is automatically rare. As an 'ignored' middle child, Katie quite enjoys the fact that her diagnosis is doubly rare. It would seem that nothing Katie does is ever 'normal'.

Chronic myeloid leukaemia has its pluses and its down sides. Katie lives in a medically managed remission by taking a pill chemotherapy every day for life. The plus of this is that she has never lost her hair or looked like a 'normal' cancer patient. Nor has she spent long periods of time in hospital, had intravenous chemotherapy, radiotherapy or surgery. She has been able to carry on living her life in the way that someone in their 20s and 30s would. In other ways it is hindered and controlled by the hospital and she will never not be a cancer patient. For example, she is not allowed to have a baby at the moment as she isn't allowed that time off treatment. She experiences constant chronic fatigue as a side effect of treatment which impacts massively on her quality of life, and is at the hospital every fortnight to try and manage this with drug changes and dose changes. The fatigue impacts so much that a stem cell transplant has been offered. A decision is yet to be made.

Katie refers to herself as a 'gobby patient' who 'gets around'. Having 'lived' in the NHS for over 11 years, Katie has a wealth of experience and knowledge and does her best to be a patient representative when she can; to be a voice for those who don't have one. Katie is passionate about helping make all other cancer patients, regardless of diagnosis, experience the best care possible.

This has included:

• Being part of a team to audit hospital wards to make sure they are compliant with national guidelines.
• Sitting on a chemotherapy expert reference group for London hospitals.
• Speaking to MPs and Lords/Ladies in the Houses of Parliament about being a blood cancer patient
• Being a Bloodwise Ambassador and spreading the word about blood cancer to the general public and talking to health care professionals about what it's like to be a patient
• Helping to set up the Cancer On Board charity and being a trustee to help make every journey with cancer a little bit easier
• Being interviewed on the radio/in the press
• Running the London Marathon twice to raise money for the Teenage Cancer Trust and Bloodwise

Cancer is a huge part of Katie's life as it is always there, however it's not all of her life. Since graduating from the University of Edinburgh, she has also trained as a Naturopath at the University of Westminster and set up her own business. She still loves going to art galleries and exhibitions, reading, eating, cooking, spending time with her family, being a devoted Aunt and hanging out with friends.

Click here to read all of Katie's articles on Blood-Cancer.com.