We’ve all heard inspirational stories of cancer fighters and survivors, about the challenge and change, how it transformed theirs and others lives. That moment is never expected, a once in a lifetime experience, right? Not for me, I wait for my diagnosis every year and every year I face the journey to living my best life. Most years I manage it, but not all of them. This is the experience of many of us who have a genetic and life long condition.
Each day is one that I treasure
I’ve known the importance of living your best life for over 50% of mine. I’ve always known I was probably genetically defected, my father has it and it is very likely his mum had it. I grew up knowing I had a 50% chance and those odds would impact on me and my family in a negative way. Even if I didn’t have the faulty gene, I have had to live with the impact of the disease through my father and what that meant for all of us. However, it wasn’t until my brother died, as a result of the first operation VHL had forced him to have, that I really understood that our disease would haunt me for each remaining days I was lucky enough to be alive. At his funeral I heard what he had achieved with the all too short life he had had and felt the determination fill me. I wasn’t going to go down quietly but at 17, I didn’t know what that journey would be, and I knew I would be on it for the rest of my life.
The following year, following my first diagnosis of an adrenal gland tumour I was faced with my mortality, it was my first.
A year and a month on from the week we agreed to turn off my brother’s life support. The same operation my brother had had, the same one that killed him, same hospital, same ward, same surgeon but a different level of fear. After all, my dad had both of his removed and he was alive and, back then, well. But as the junior Dr explained, you’re the closest thing, genetically to your brother that exists.
Those words swam around my head long after I came out of surgery.
You see my brother’s operation had been a technical success, but the following day he was on life support. He hadn’t fought for his life, his brain had swelled and crushed, his heart tried to stop us from having to live the horror of making the choice, and it broke twice, but determined, a healthy 22 year old shouldn’t die, the medical staff got it started again, and again. But his brain was dead and we knew after three days of begging, bargaining and praying that so was he.
Then we switched him off.
I chose my funeral outfit, and didn’t have enough black to wear. I watched his coffin travel up the aisle and I stood, sat, kneeled and sang as we cried at the loss. I had changed. A year on I knew that if I left the hospital on my own two feet that I would spend each day after counting my blessings and probably my tumours. I promised myself that I would have a eulogy to be proud of.
Since then I’ve had reasons to falter and I do
I’ve learned how to be a powerful patient and how to advocate for myself and my father in hospitals. I’m an expert at my own condition and I am proud of my VHL warrior status. I have sought out ways to be strong, to keep being, to keep going, to keep myself from falling apart.
I’ve followed my dreams and faced many fears. I became a teacher and found pride and joy in that role. I’ve had a baby and got married and found the strength to keep going.
I didn’t know that many in the VHL community had begun to refer to our disease as a genetic cancer and when I did, I felt it didn’t fit. Cancer is a word with such a frightening subtext, I didn’t have cancer. I didn’t have something quite that final. Did I?
It was a letter that changed everything, it was the letter outlining my life expectancy.
I’d asked because we wanted to adopt, and the various agencies asked and I didn’t know, because I didn’t want to know. The clinical letter had various numbers and information. It also had the words renal carcinoma. The most likely thing to kill me. I didn’t have renal carcinoma, neither had my father and I thought, that’s ok, we don’t get that bit of VHL.
The following year I did, the scan showed a cyst in my right kidney. There is was. And after three years of monitoring I had my first partial nephrectomy. Cancer free. As anyone who has have cancer knows, you always fear it’s return and just last year I had the news I didn’t want to hear, and this time that it is on both kidneys. But I’ve made some significant changes in my life, I have reduced stress and I’ve reminded myself how important it is to love and laugh, I have a promise to keep. This diagnosis isn’t fatal and I will stay strong. I will continue to rely on the annual scan to tell me how far it has progressed and I know I’m very healthy and happy. That is worth holding onto.
I cope by talking with great friends and family and by writing lots of it down.
For over 10 years I have recorded my thoughts and feelings about life with a genetic defect, and in recent years I’ve come to rely on the opportunity to write my struggles and apparently rarer moments of joy. It helps me reflect and get the screaming voice of fear and doubt out of my head, so that on my darkest days, when the sheer volume of tumour possibilities, the danger I know my body could be growing as I type, I can keep that promise to myself, that I will recognise the precious, value the chances and when I die, those listening to my eulogy would recognise the positive and powerful woman that they loved and respected and find out a few new truths and facts. That at my wake, my family and friends will share stories of my strength, determination and inspiration and it helps me know that day is a very long way away.
So far, my good choices have taken me a step closer to that promise and I add pupils to my list of attendees. I have found love in my job and hope in my students. The yearly battle, that annual diagnosis can try to stop me, but it hasn’t won and I won’t let it.
Chloe speaks as a warrior of Von Hippel-Lindau syndrome (VHL). Each year she waits to find out if the year ahead will be a good one or another year of treatment.