On 21st December 2012 we were told that Lou’s cancer had returned. Where cancer is concerned, it’s safe to say there’s no such thing as good timing.
Though we’d heard the words several times before, we’ve always approached such a diagnosis with both positivity and a sense of hope. We’ve also known that we’ve been lucky in having the leading oncology specialists looking after Lou. More reasons for hope.
This time was different. We were told how the cancer had spread. Rapidly. This time we were told it wasn’t treatable, Lou could only expect palliative care. We both sat there in disbelief, we were numb, we could barely speak, we both cried.
Since then we’ve had to undertake things that most people won’t have to consider for many years, but for us they have become an urgent necessity. We’ve shared this terrible news with family, friends and colleagues. All have been amazing, providing us with moments of brightness, happiness and love. We’ve also focused on making the most of what time may be left and doing the things that Lou really wants to do, as long as she’s capable. Our life is now very much for the present.
It’s hard to see how there is an upside in having a life-ending illness, but we’ve decided to share our story in the hope that if only one person draws comfort, inspiration or positivity from our journey, then some good can be done. Hence this first post.
In October of last year Lou decided to write a presentation for the charity where she works, The Thistle Foundation. She saw this as a way of raising awareness and funds for Thistle. What it also does is say everything about Lou, her outlook, the way she always thinks of others and never herself.
I want to tell you a little about myself.
I’m here today to talk to you about the charity where I work, The Thistle Foundation.
But before I do that I want to tell you a little about myself.
I’m 41 years old and studied languages at Oxford and then lived abroad in Paris and San Francisco.
I liked to think I was fairly active but really I just loved to lounge about.
I’d always been interested in the arts and worked for a number of years in small arts organisations and I ended up running the Press & Marketing Office at the Fringe which brought me to live in Edinburgh in 2004. This is a picture of me 6 years ago. Please don’t tell my mum about the pint of beer I’m holding…
And this is a picture of me 4 years ago the night before I lost my leg to bone cancer. The big arrow was drawn on by the doctors the day before surgery…it’s a bit worrying to think that’s how they make sure they get the right leg but it’s best not to dwell on that.
You might also notice I’ve got rather fetching short hair in this photo….that wasn’t really a style statement…but actually because I’d had a year of chemo the previous year. To try and get rid of my cancer. But it didn’t work. Hence the big black arrow. Sadly that surgery and a second year of chemo didn’t work either. And over the next 2 year period I had my left leg amputated 4 times, each time taking more of my leg away.
And now I’m standing in front of you with an artificial leg. Artificial from hip to toe. And I’m not the skinny girl in the white dress with 2 legs anymore. In total I’ve had 9 major surgeries, including 3 to try and save my leg before it was amputated and 2 to remove firstly part of my left lung and secondly a third of my right lung in May last year due to the cancer spreading.
But I am still standing here. And the thing I want to tell you is that I’m standing here representing Thistle.
Diana, my boss, who’s also the Chief Exec of Thistle, hired me as External Relations Director in 2009. I’d just had my leg amputated for the second time and came for interview only 4 weeks post surgery. I got invited back for a second interview, which in all honesty was a chance to meet some of the people I’d be working with and for them to check me out too I guess! And I remember when I sat with Diana in her office, and she said to me that she’d really like to offer me the job and what did I think. And I thought, I need to be honest and tell her about my health and that I am a risk. So I did. And she nearly made me cry on the spot (never a good plan in a job interview!) ‘cos she said she was prepared to take that risk ‘cos she wanted to hire the person.
And that’s who Thistle are through and through. Thistle are a charity that live and breathe their values. Genuinely. And, since I’ve been at Thistle, 4 of the surgeries I’ve mentioned have happened. So I’ve had to go off work 4 times for weeks or months at a time.
But I’ve always known I can come back, and that I’m valued for my abilities and just general idiotic behaviour. And I’ve known I can take whatever time I need when I need to be off work. And that I should only come back when I feel ready. So I’ve always wanted to come back to work. Because work for me isn’t just a job and a salary. It’s a chance for me to still feel I have a contribution to make. And that my talents and skills are recognised despite the medical hiccups and missing leg.
And it’s exactly the same for the people we support through our services.
At Thistle we say “We believe life is for living”.
And this is both an inspirational statement about being able to achieve your dreams. But it’s also about the ordinary but equally important and necessary bits of life, like having friends and a job, being seen as a person and feeling good about yourself.
And that might sound simple, but it’s actually quite complex for some people who have disabilities or have ended up in an awful situation because of post traumatic stress disorder or Parkinson’s or MS.
So at Thistle we help people get great lives. Real lives. Full lives. And we work with a huge range of people, with a whole range of disabilities or health issues. But the common theme is that we support people to get great lives on their terms.
We take the time to work out what people want and we do our best to get them there.
That’s what really makes us different from others. We’re like Ronseal. We do what we say on the tin. We believe life is for living and we mean it.
So that’s the emotive part over and time to bring you back to the real world and talk to you about how you can help.
We’re a charity and the support we provide costs more to deliver than we get in funding. So we fundraise to cover that gap. And you can help us with that. I’d like to ask you today to consider giving us a one-off donation. Or maybe setting up payroll giving at work. Or become a regular giver. Or if you prefer to help in another way, you can volunteer for us or maybe run an event to raise funds for us. Or if you’re incredibly popular on twitter you could tweet about us.
Whatever you do, it does help and it will help. And you’ll be a Thistle Friend for life.
And people like Bob can keep smiling.
Thank you everyone…..for listening. http://www.thistle.org.uk/