Sunday, 28 January 2018

Cancer On Board

My little charity. 

Nearly a year ago the paperwork came back from the charities commission or whatever its called to say that Cancer On Board did deserve charitable status and what we are doing is worth it. I say we because there are 3 of us who are trustees and have been running it all so far. With help along the way of course. Lovely lawyers who did all the paperwork pro bono, and some of my networking contacts for doing the website, the logo, and the printing of the printed cards and a banner for very little or no money. And a massive thank you goes to a friend of James (the person whose idea it all was) who has helped with design, words and the overall feel of the charity. And everyone who has been kind enough to give donations. Without these people, it wouldn't be where it is so far. 

On Monday night we had the official launch at the House of Lords. A massive thank you to Lord Cashman for hosting the evening and taking the time to be there and speak.  As a trustee and a chronic cancer patient, I spoke about the difference the Cancer On Board badge has made to my life. And I can't really put it into words. I now don't worry about getting on the tube and being able to sit down. This is huge. Massive. More than a relief. It's changed my life in London. It's had a bigger impact than the TFL 'please offer me a seat' badge. The two combined are a killer combo meaning that I always get a seat. It might take a stop or two, but I always get one. (Unless I'm feeling ok and I hide them as I can stand/lean against the tube wall etc until I get off). I can't really remember what I said in my speech. I made notes but in true me style I didn't really follow them... but I did manage to get through without crying or swearing! The launch was only 3 days after my 11th cancerversary and with my mother standing right at the front in my line of sight I didn't know if I would make it through or not. But I did. 

The launch, I think, has been a success. Mentions on social media from other cancer charities and cancer bloggers. Verbal support from various members of the Houses of Parliament. But I suppose the main thing for me was to give some exposure to looking healthy and living with a chronic blood cancer that no one knows about. Cancer is often hidden. We are bombarded by the media and cancer charities of photos of people with no hair, eyebrows, eyelashes and attached to tubes. For many, yes, this is cancer. But for so many it isn't. And if our Cancer On Board badges help to educate the general public about this. Well. Then my work is done. 

I have now lived with cancer through my 20s and early 30s. It's with me every day. I take chemotherapy tablets every day. But I also live every day. And that's we want to do with our badge. To make living with cancer during treatment just that little bit easier. 

If you want to know more/get in touch/get a badge/or give a little donation (only £1.50 gets a badge in the post to someone) please go to www.canceronboard.org and follow us on Facebook/twitter/Instagram. Just search Cancer On Board.

With love and hope,
XXX

Friday, 19 January 2018

11 Years Today

11 years. Can't quite believe it. I haven't cried this week. That's strange. Normally in the lead up I'm a bit emotional, weepy. Not this year. And I think I only cried once over Christmas! Maybe I managed 10 years and now it's just another tally on the sheet. Becoming less relevant.  I don't know. 

Or maybe because the last couple of weeks since being back in London has been really busy. No time to think and dwell on me. Meetings and clients and research and admin has definitely dominated. Which is good. The way it's meant to be. 

And I had just over 2 weeks off at Christmas. A proper rest. I'm not completely destroyed by fatigue at the moment. I have hope with treatment options. Waiting to hear on a new interferon. My consultant is outstanding. She has carried on over Christmas to track down the right people to speak to. A year ago, two years ago, three years ago (you get the picture) I had no treatment hope. I thought how I was was it. And in the last year I have been offered a transplant and interferon. So far the interferon hasn't been great or worked on my resistant CML. But. It's not. Well this is your life and make the best of it. (Jury is still out on transplant). 

I can't really believe another year has gone by. Time is going by so fast. 

So I don't really know how I feel today. I suspect I've just been too busy to focus on it or realise it's here. 7.30 tonight is the time. The time the phone rang. And my life took a turn I never expected. I'm not angry about it. I get fed up and fucked off about things from time to time. Exhaustion isn't fun. But. So many positives. Tonight I am seeing wonderful friends that I have met because of cancer. 

I love my job and what I do. Because of cancer. 

I know how much I am loved. Because of cancer. 

I know who I am and love who I am. Because of cancer. 

And I'm getting to the point where I think I am who I am. Because of cancer. 

And would I change it? No fucking way. 

So today. 11 years after getting my blood cancer diagnosis of Chronic Myeloid Leukaemia shall be a happy day. Because I can't enjoy my life and be happy if I'm not happy about cancer. 

With love and hope,
XxX