IN the light of Stephen Sutton’s recent heroic fund-raising and awareness efforts, Sutton Coldfield’s very own inspiration is doing all she can to raise awareness herself.
Kathryn Cartwright revealed in October last year that despite fighting leukaemia, having two bone marrow transplants and a liver transplant, she is dying.
It was after her second bone marrow transplant – which was not an exact match – that she began to suffer from liver problems in October 2008.
From this, she has developed problems with the liver transplant, lung problems and infections. It has now meant she is not eligible for a new liver.
After the heart-breaking inevitability of her situation, Kathryn embarked on a campaign to raise awareness of bone marrow and organ transplantation.
She admits Stephen Sutton’s story did have an affect on her – it would be hard not to, after all, however it provided a constant reminder of what she was going through herself.
She said: “How I felt about Stephen’s media coverage was complicated. On the one hand, of course I was happy for the publicity it gave to the Teenage Cancer Trust and all the support and funding they received because of him.
“But on the other hand, just because of my personal circumstances of not knowing how long I have left to live, every news bulletin felt like another jab in the side reminding me that I’m going to die young too, which is something I try not to think about as a general rule.
“It’s not that I didn’t think it was newsworthy, it was just that it hurt to hear about death in such a similar circumstance to mine all the time. I did meet Stephen at Find Your Sense of Tumour but we didn’t speak, it was literally an introduction if that. I doubt he would have recognised me. Our only real connection is the QE hospital, with him being local as well.
“My cancer and treatment was all over and done before he was even diagnosed in 2010 – I had my liver transplant in December 2008. He was diagnosed as incurable in 2012, whereas I found out I couldn’t be fixed in October last year.
“His story made me want to raise more awareness of bone marrow and organ transplantation, as I don’t think there’s a person in the country who could be unaware of TCT and teenage cancer in general, but I’m still getting tweets from people who’ve never heard of bone marrow transplantation and have now registered.
“That’s what spurs me on – the fact that people still don’t know about this, and it’s people my age who are prime donor material.”
Kathryn admits she does feel like she is making progress in her quest to raise awareness. She has spent months campaigning for more people to become aware – and put their names down – on the bone marrow transplant list.
She continued: “I really do feel like I am making progress. The amount of messages I’ve had recently have helped so much, especially since I’ve been having something of an emotional crisis about having to increase my steroid dose again and people on Twitter and my online blog have been so supportive.
“It has been totally overwhelming and truly heartwarming to hear from people saying I’ve inspired or moved them in some way.
“I try to reply to everyone with a “thank you” but it really doesn’t feel like enough – it does not come close to really conveying how much I appreciate every single message.
“The truth is, I never set out to be an “inspiration” of any sort – I just wanted to get through having cancer and return to my normal life. But then the cancer came back.
“I am so grateful for the life that I do have, the people in it and the things I’ve been able to do.
“I have been so lucky, and am so privileged to affect so many lives. My point is thank you, but please don’t stop here. Keep signing up and talking to people about these things, because if I’m going to live big, I’m going to do it through all of you.”
Incredibly, the 23-year-old is the only person in the world who has suffered these particular set of devastating conditions.
A girl in Australia had a liver transplant and there was stem cell migration, but Kathryn is the first person known of to have had the cancer twice, transplants, liver and then subsequent accidental stem cell transplant when cells from the new liver replaced those from her second bone marrow transplant. .
In a heartbreaking revelation, Kathryn admitted she has even thought about suicide at times.
She said: “No one expected the stem cells from the new liver to move into my bone marrow and expel the German donor, effectively being a third stem cell transplant.
“How could they, when I’m the only person I’m the world for all this to happen to? It’s great to be a medical marvel, but not when no one knows what to do with you because there’s no precedent, and you’ve got GvHD (graft versus host disease) in your lungs from your liver donor and the damage is irreversible.
“I won’t lie – there have been times when I have seriously considered suicide because it felt like the effort required to continue living was going to be too much for me to bear.
“Then I realise how it would affect everyone I know, how devastated they’ll be when I do die and for me to be the one to inflict that upon them would be far worse than the discomfort I go through each day.
“I know it seems difficult and impressive from the outside, but I think that people are stronger than they realise and you only know the depth of your ability to cope when something like this happens.
“There are choices to be made – hear the bad news, wallow in it and live in misery, waiting for death, or accept it, find the fight within you and learn to live with the hardships that might come your way, still waiting for the inevitable but not allowing it to dictate what you do before it comes.”
In an extremely emotional eye-opener Kathyrn revealed the moments when she told her family – mother and father Judith and Alex, and sister Chrstine, the devastating extent of her condition.
“My mum cried when we were told,” she said “and I did a little bit once the shock had worn off. My dad just hugged us. It was hardest to tell my sister, as she was in New York on holiday and we were waiting for her to come back before we told her.
“So I had to tell her over the phone not long after she’d landed, and not being able to hug her while she wept down the phone as I said I loved her was the hardest thing I have ever done and I tear up just thinking about it.
“You always think these things don’t happen to you, they happen to other people and you read about it and say ‘God how awful’. But then it happens to you and it totally blindsides you, but you adapt because you have to.
“I think they’re proud that I’m trying to embrace what time I have and be proactive about stopping the same thing happening to someone else. I don’t want anyone else ever to have to make that phone call.”
Asked how she found the inspiration to deal with living her life, raising awareness, fulfilling her bucket list and undergoing treatment, all while knowing she could die at any time, Kathryn admits it is hard but she tries to focus on the positives in her life.
She added: “Sometimes it is difficult to find the energy and I have my down days where everything just seems miserable, but I think it’s more impossible to live while letting it all weigh me down.
“Most of the time physically, I feel fine apart from being totally knackered because steroids wake me up at 4am every day, so it is more the emotional toll that it takes on me.
“I do wobble sometimes and have a minor meltdown, but afterwards I feel better and just try to find the good things to concentrate on and honestly right now it isn’t so hard, there is so much to be thankful for.”
To find out more about becoming a donor, visit http://ift.tt/1oEtcKf; http://www.anthony nolan.org; http://ift.tt/1qeqwAX or http://ift.tt/xH79A1.
Read more: http://ift.tt/1qeqwB1