Tuesday, 25 August 2015

New Challenges - Writing a Book!

I'm nearly 23 months post transplant, I can't believe where the time has gone, but that's because having my transplant has changed my life so much and allowed me to do so many things and be so busy. It's given me a chance to try new things and have new experiences as well as do things I used to do, but thought I wouldn't ever do again.

Article in Emphasis magazine

One thing I've always dreamed of doing is writing a book. I've always wanted to do this ever since I was little, as I love reading books and I love writing. I'm one of those people who cannot physically walk past a book shop without having to go inside and come out with a handful of books. I've more books loaded on my kindle than I can manage to read and I love real books too, so have bookshelves full of books everywhere around the house. There is something special about holding a book in your hand and the thought of holding a book I've written myself is a dream I want to make come true. 

I decided after my transplant to get myself writing more and I enrolled on a writing course. My course started with writing articles for magazines and for a while I worked on writing articles about my Pulmonary Hypertension and Organ Donation and Transplant to help raise awareness. It gave a purpose to my writing and they are subjects I'm passionate about. I was delighted when I had some success in getting published. It gave me some personal achievement, as after having been ill for so long and being forced to give up my career I'd lost some sense of purpose. It gave me some sense of satisfaction to see my own writing in print and published in magazines. I wrote articles for varied magazines with different audiences. 

Article in Cumbria magazine

After acceptance of terminal illness and facing an uncertain future and then being given your life back, part of recovery through all these stages is finding some purpose in life once again. You suddenly have your future back when you thought you might not have one.Then you have to find what you want to do with that new future. It's similar in those stages of being chronically ill, part of coping is finding new interests for yourself when your unable to do things you could do before. Some people strive to get back to work, to a job or career they've always done or they're forced to start anew and find fresh challenges. 

I used to be a primary teacher and decided that although I loved my career, I'd left it behind years ago and it's time for something diffferent. I decided to write instead. After completing those first few assignments of my writing course, my future assignments were taking me in new directions to write about a variety of topics and although I still want to do this, I couldn't get myself motivated about them, because I still had an overwhelming need to keep writing about my transplant and write a book.

Article in Woman's Weekly Magazine

In the end I decided to concentrate on writing my first book and the saying goes, 'write about what you know'. I started writing about being diagnosed with PH and then being told I need a transplant, then all the waiting and finally getting my transplant. All those thoughts and feelings that I went through. There I had suddenly arrived at that book I've always wanted to write - it turned out to be a memoir. All those years of saying one day I'll write a book, I didn't ever dream it would be about these topics! 

It's taken a year so far and I'm delighted I finished my first manuscript recently. It still needs work - some editing and redrafting and then there's work to be done on book design and working my way through self-publishing. I'm therefore still a short while off to completion, but it's given me a new purpose. It's a huge learning curve as I tackle each step, but that's what is wonderful about having a transplant - the new opportunities and choices that you suddenly have with your new life. That chance to do anything you wish and take on new challenges. 

When I was sick, I still used to look for challenges and opportunities - things I still could do - that's when I started writing and I set up my blog. It gave me a purpose - a chance to raise awareness about subjects I was interested in and a chance to use my photographs - photography was another interest I found while feeling poorly. The two went hand in hand and now one thing has led to another...

Because of my transplant, I'm getting closer to my dream. For me, it's been part of recovery - all that writing has been truly therapeutic. For my family, I hope it will be a momento and a catalogue of events that shows how we coped and overcame a very challenging time. In the process I hope it may help others understand some of the issues patients with long term and chronic disease face and what they have to go through, as well as raise more awareness of living with a rare disease like PH. I hope it demonstrates the huge hope and benefits that having a transplant can bring and helps raise awareness of the shortage of organ donors, as I had to wait two years for my transplant. Ultimately I just hope some good can come out of it. 

I was lucky to do a couple of press interviews recently - one paper wanted to do something on my book and although I'm not quite done, it's always great publicity for PH and organ donation, and so was a great opportunity. Another paper wanted to publicise the fact transplant operations are down in number for the first time in years compared to previous years, so again promoting more awareness for organ donation and transplant. Of course with my transplant story comes my PH story, so inevitably more awareness for that too. Here are the links below to the two press articles.

I'll keep you posted on my book writing and progress, but in the meantime what has everyone else done to help yourself through illness or recovery or just for a new challenge or fresh start? I'd love to know! 

Tuesday, 11 August 2015

First Time at the British Transplant Games

I've just taken part in my very first British Transplant Games, which was held in the city of Newcastle this year. The games are supported by the charity Transplant Sport and Westfield Health and help to raise awareness of the need for more people to join the organ donor register as well as helping to demonstrate the huge benefits of transplantation. 

I've never been a sporty type - I always wonder now might that be due to having a lung disease I didn't know about - it's something I'll never know. I was encouraged to give it a go by my friend Maggie, who is the games team manager for my hospital, Papworth and I'd also seen some of my other friends taking part in last year's games, so was keen to give it a try. 

I was a little dubious, as not being that keen or good at sport in my pre transplant days and never having done anything competitive since my primary school years, I didn't want to show myself up or let the Papworth team down. I was assured it wouldn't be like that though and that it was all about taking part, having a go and being inspired. 

It's a four day event and when we arrived for registration at Gateshead Stadium, the archery was already underway. There are many events to take part in from social events to swimming, field and track events and cycling and walks. 

My first event was taking part in the opening ceremony. This was a very proud moment when around 900 transplant patients gathered together in our hospital groups and took part in a parade through the busy centre of Newcastle to the City HalÅ‚. 

In the City Hall each team was given a massive round of applause and there were representatives from the charity Donor Family Network, who represent our donor families. When they walked through the applause was deafening and we gave them a standing ovation - of course none of us would even be in these games if it were not for these brave families and their loved ones. 

We watched the ceremony, where the Transplant Games flag was passed on from representatives of last year's host city Bolton to representatives from Newcastle. Then the flame was lit to mark the start of the games. I was delighted to see one of my friends Chris, from Newcastle's home team, the Freeman Hospital, help light the flame. The ceremony ended with a small concert by Joe McElderry, which I hadn't expected. Afterwards I got the chance to meet Chris and his mum Yvonne for the first time, along with other friends.

Friday we didn't have any events, so we watched a few activities at various places then went along to the social evening in the evening and watched a bit of the darts. Then on Saturday I'd entered the 3K walk event and managed to complete this. It was a lovely walk along the quay side. I do a lot of walking, but doing it as part of a race is very different when having to keep up a good pace all the time.

 A few hours later both Rob and I took part in the 'Donor Run and Walk.' All the transplant patients took part in this and their supporters so there were nearly three thousand of us down on the quay. It was a gorgeous evening and everyone was in great spirits as we all undertook the walk or run in honour of our donors. 

After completing the event we got medals and I managed to meet up with Chris again and another friend called Natasha. Both Chris and Natasha have transplanted heart and lungs like me and both had got in touch with me just after my transplant and have given me lots of encouragement. There aren't so many of us with transplanted heart and lungs, so it was fantastic to get to meet them both at last. 

Sunday was another busy day, we spent the afternoon at Gateshead Staduim and enjoyed watching some of the athletics and field activities. I was having a good look and trying to get a feel for what I might enjoy taking part in next year. I think I'm definitely going to do the donor walk and 3K walk again and I'm thinking about things like javelin, archery, ten pin bowling and table tennis perhaps. We shall see...

Sunday evening and the games finished with a gala dinner and closing ceremony. Again, I hadn't really known what to expect, but we had a fabulous evening. We were seated all together as a team and had a buffet meal followed by the awards ceremony. This was held in an iconic building called the Sage Centre, which overlooked the Tyne and the Millenium Bridge. 

At the awards ceremony, I was thrilled my friend Chris was awarded a special gold medal and then my friend Maggie won the cup for best super veteran female. If that wasn't enough, we were then surprised to find out that our team had won the best heart and lung team cup. That was the icing on the cake! 
We had some fun as Jeremy Kyle entertained us with our own Jeremy Kyle Transplant Show, which was hilarious and then there was a big disco party to follow. It was a fantastic experience and we had a great time. 

All in all, I thoroughly enjoyed myself - it was a very new, emotional and different experience to be part of - one I know I wouldn't have ever done if it weren't for my donor and their family. I've come home inspired to keep on getting myself fitter and try out some new activities too. I've already started trying harder with the walking - not walking further, but trying to walk faster. Maggie told me I'd get hooked if I came along...so Liverpool 2016 here I come!