Organ donation week

Friday, September 07, 2018

I've had the worst week since I started this cancer journey. It's been a real strain on my body and I'm gutted I haven't been able to promote organ donation this organ donation week as I have other years but I wanted to write something without letting this week go by.

Before my transplant I was dying. I was breathless to the point most of you can't imagine because I have a job remembering now I can breathe. The fatigue, pain and burning in my lungs. The constant fear that something could happen and start off down a road I wouldn't come back from. The hospice that were so supportive but also there for end of life care which hung over us like a black cloud. 

I had a difficult recovery, I've had problems since. Infections, bouts of terrible depression, biopsies, fractures, and both chronic pain and fatigue. I've had more hospital appointments, canulas, X-rays, scans than I can count. 
And the heart stopping, stomach plunging diagnosis of stomach cancer, potentially caused by the toxic drugs that stop me rejecting my organs. A picc line, chemo, major surgery, half my stomach removed, injections, pain and fear. 

Someone pointed out to me that many people would not choose my life. There have been times when maybe I wouldn't either. For me though, these have been fleeting moments. I can honestly say, that knowing what I do now if I could go back and make that choice again, transplant or no transplant I would say YES every single time. 

Life is fucking hard. Unbearable sometimes and often the nice bits are marred by pain and exhaustion. I have to change plans or plan with precision how I do things so that I can manage them. I often miss out. I will never have kids or probably my own place, or the career I long for solely because of my health. 

BUT. I am alive, and not just alive but living. I have my incredible parents, siblings, friends. Many friends I wouldn't have met if it weren't for my transplant. I have nephews and a niece that I've seen grow up for the last 7 years. I've gone to Florida and New York and Paris and Dublin and I intend to go to even more places I've never seen. I've started my own business and my cakes allow me to be part of someone's birthdays, weddings and special occasions. I've done many things not in spite of but because of my health issues. I've seen theatre, eaten delicious food, made memories. I've met medical staff who feel like family not the health professionals caring for me. I got my dog who I love so much. I've graduated. I've become a godmother. Ive been and will be a bridesmaid. I've seen my sister get married. I've connected with old friends. I've learnt so much about myself. I've overcome so many of my fears. I'm quite proud of myself rather than always hating the body but can't help but break down. 

Hopefully I have overcome cancer. Think what you like about this but I'm sure it will come back, by I intend to live a lot before it does and I will meet it and fight if it does return.
I know my life will be shorter but I intend to try and enjoy it as much as I can and do as many things that want before my time comes.  For the Harry Potter fans among you I would like to be the third brother I The a Tale of the three brothers. The one who walks away from death, lives his life and then returns to greet death as "an old friend" and "go with him willingly". 

What I'm saying is, that despite issues with post transplant issues I would always take that call and be insanely grateful for my life. I love my life and fight for it with the ferrocity that I do for that very reason.

This organ donation week please sign the donor register if you haven't already, and talk to your family because they need to know your wishes. If you'd like to help even more please spread the word on social media and encourage others to sign up. The link is in my side bar. 

I have written a short blog about my journey for NHSBT and you can read it here if you want to!

Someone, many people in fact will not get the chance I did purely because not enough people have signed up. Give someone that chance to live. 

As a quick addendum (right word?!) to that I was interested that people were asking me to blog about my opinions on opt out and other related topics, if there are any transplant related questions or topics you'd like to hear my views on I'd be happy to address them! Leave me a comment or a tweet and let me know xxx

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  1. Hi Tor, I have come here via Twitter and am new to your journey. As a fellow woman in her thirties (albeit with none of your issues you are dealing with daily), I just wanted to say what a wonderful inspiration you are. Your story has reminded me to embrace life and be happy and grateful. Keep enjoying life, I think you're amazing Xxx

  2. This was a lovely read; as a fellow Harry Potter fan I really got what you were saying about that. I have a disability but it won't shorten my life. But your post reminded me that life isn't about how long it lasts but about what you do with the time you have. I'm a procrastinator but you've inspired me to go for it. I already signed the organ donation register after reading your story but I check in to read your tweets and posts because I'm rooting for you. I hope you feel better next week.