Speaking Up About My Cancer
I’m not going to lie. I really enjoy talking about myself. I think it’s partly middle child syndrome and partly being human and inherently selfish and wanting to self-promote. And I am 100% A-Okay about this.
One thing that has happened since my diagnosis is that I have started to do a lot of public speaking about me, myself, and cancer. This really began to happen when I was 23, moved to London, and got involved with a charity called the Teenage Cancer Trust. For a couple of years, I spoke frequently on their behalf. It tended to be when they got a new corporate partnership, or a company renewed theirs. I went in to talk about what it was like not having access to age-appropriate care as that is where the charity excels. Giving the very specific care that 16-24-year-olds need was something that I didn’t get at my diagnosis from my consultant when I was 22.
I found my voice to raise awareness
Through them, I found my voice and realized that I am confident talking in front of people about myself and my experiences... including the good and the bad. I also learned that it’s ok to cry when talking about it, as well. It’s good to show that it is ok to cry and that things can be emotional – good and bad. This human side of talking resonates with people and really engages them. It shows you are real.
I have spoken to groups as small as 3 or 4 and up to groups as large as 3,000 all about me, myself, and cancer. In all honesty, I don’t mind how many I talk to because I just enjoy raising awareness of what it’s like to live with CML and everything that I have been through. I also speak to make cancer approachable and to get conversations going. It doesn’t have to be a whispered topic that isn’t acknowledged.
The good, the bad, and the ugly
I also talk to people about the excellent care I have had alongside the bad. I do this especially when talking to politicians, charities and health care professionals. If the good isn’t highlighted, which it so often isn’t, how can anyone know what is good? I mention the bad, not to whine, but to flag things that shouldn’t happen to patients. I also flag the bad so those who are in a position of power or who care know what not to do or what to avoid.
I recently spoke to a group of nurses at a large London hospital who were taking a course about cancer and how to look after patients with it. I think it’s really great that there are these courses available for nurses and other health care professionals. I also love the fact that I get asked to go in to talk to them to tell them how it really is. I also let them ask me anything they want, so they can get an honest patient perspective. It also means that they can ask me in a safe setting with complete permission from me to be asked anything, rather than being in front of a patient on a ward or in a clinic and asking them and potentially getting the timing wrong.
Honored to represent fellow patients
I also love going in to talk to nurses about my experience because they really care. They are in their job as a nurse because they really want to make a difference to the patients. I feel honored to go in and talk to them on behalf of all cancer patients who don’t have a voice as I do. That can’t bear the thought of standing up in front of strangers and talking about their diagnosis and treatment. So, I go. Because I love it, I’m not going to lie. But also because I feel that I have a bit of a responsibility to those who can’t do it. And for those who are no longer here.
Being able to do this is definitely a plus side of my diagnosis and treatment.
What type of blood cancer are you or your loved one diagnosed with?