Last week, I looked at online communities and the special meetings and connections they can bring. This week I’m pleased to introduce my first guest blog written by Fiona Buxton who I met on-line. She is currently dealing with the same rare cancer I had – high grade Endometrial Stromal Sarcoma – and takes a look at her journey from the shock of the initial diagnosis to how she has learned to deal with her situation.
…..‘In the womb, the lungs and in the bones. And because of that it is incurable. And will be significantly life shortening.’
The registrar nods her head slowly but definitely as she gives the final verdict. Just in case I haven’t understood quite how bad it is. But inside there’s a little bit of me that remembers learning hypnotherapy. My subconscious mind is saying “No – that’s a hypnotic suggestion – why are you nodding your head? I don’t have to accept this. And you’ve got the language wrong – what you mean is “We can’t cure it … Yet.”
And I have tried to carry that sense of disbelief – or belief in an alternative future ever since that awful afternoon in the spartan consulting room.
That was only 8 months ago. And now my life has changed out of all recognition. 18 months ago I was a busy local councillor and mother of 3, cycling everywhere, fit (so I thought) and hardly a candidate for a chronic degenerative disease. In the autumn of 2012, I started experiencing bad back pain, heavier periods and unbelievable fatigue. Thinking I was merely suffering the ravages of the peri-menopause, I ploughed on, just going to bed a bit earlier. A visit to my doctor turned into an anxious round of hospital visits and medical investigations.
But after the diagnosis my body locked up. Fear took over and I could barely walk. If I stepped over an uneven paving stone I would freeze up. I walked like an old woman. I felt as though I’d aged from 40 something to 80 in a matter of months. Sleep was difficult. I discovered meditation – it was the only way to calm down enough to find rest. I woke every morning thinking I was in a bad dream – and the mistake would be revealed. Hair loss was a blow – until I started looking at pictures of Buddhist nuns and accepting my baldness as part of a pilgrimage to a new life.
Giving up work was hard – and telling people the news was awful. Everyone assumed this would just be a passing blip and I would be back to normal in a few months. I couldn’t bear to give them the full story – because that would mean accepting the medical verdict myself. Telling my parents was the worst part of all – in the end I wrote a letter, followed up with phone calls by my brother and sister to check that the letter had been received and the most surreal British, understated phone call – in which my father answered with “how are you” and I replied “oh – fine – how are you” having thought there had been some mistake and he didn’t actually know what was wrong with me.
So what has changed since those first days? Firstly, my beliefs have changed. I am so grateful to the people who sent me improbable survival stories. They made me believe that despite the prognosis, I should trust my gut instinct and never give up. One of the best was from a GP friend, who had had 2 patients who had recovered against seemingly impossible odds. After the “expectation management” from hospital – this was what I most needed – a medical “don’t give up” message.
I still dislike hospital and its over-reliance on a medical model of care. I can’t fault the care I’ve been given – but have found a world of therapists – including those trained in conventional medicine who have transformed my mental outlook and made me believe that with the right food and nutrition, complementary therapies and exercise you can shift from being a passive recipient of care – to an active participant in your future.
I have also learned to seize the moment – having been incredibly inspired by the story of Ian Gawler, an Australian cancer survivor who went on to found lifestyle based support groups out there, I went on a retreat at his foundation near Melbourne. Yes …a long way to go … but I couldn’t find anything quite the same in this country. I learned to meditate, cook nice vegan food (my own was VERY boring) and heard the koalas courting in the bush – a great trip which almost compensated for the agony of seeing pictures of my children on a beach in the summer and just wanting to be with them – not stuck in hospital.
I have learned to say “No”. I used to say yes to far too much – adding to my workload a stack of things I felt obliged to do, but didn’t love. Limited time and energy really makes you focus on what is important.
I am beginning to learn about detachment – letting go of the past, negative emotions, regrets, unhelpful thoughts about how my disease could have started. I have felt embraced by so many good friends – but also become more discriminating about who I see. If they look pityingly at me or project their own fears or anxieties onto me, they cannot help.
I have learned not to bottle up my emotions – particularly anger and grief. I used to pride myself on calm, not upsetting other people and putting others first. I’m learning to let go, rather than letting the tension build up inside.
I’ve learned to “listen to the universe” – help and ideas have come from surprising sources – I even found organic, dairy free porridge being sold from a van in a station car park in the backwoods of Northumberland one morning!
And I am especially grateful for the chance meeting across the internet with Lisa – because however inspired I am by most survivor stories, there’s always a little niggling voice which says “Oh – they had something different; It was easier because…” Or they had no children – of course they could meditate and make juice 25 hours a day. But meeting someone sharing such a rare condition has given me such hope that my wildest dreams (never paraded before my sceptical oncologist) could be realised.
I miss cheese sandwiches and big fat cakes. I’d rather worry about getting my weight down than keeping it up. I miss the energy I used to have and there is nothing I’d like more than a brisk walk along this Scottish beach on a nice sunny day. But I’ve gone on a huge journey – from despair to hope. I’ve shed 2 stone of flesh and probably mental baggage as well. I’ve travelled round the world in search of a medically improbable cure – and whatever happens, I feel I’ve given myself the best chance I can.
May 2, 2015 at 12:08 am
Dear Lisa, Thank you for making my mummy so hopeful and as happy as she could be. I miss her loads but it is so wonderful to know that she had a wonderful friend like you to look after her. Thank you for always being ready for tea and Skype with her, I know she always looked forward to seeing you.
Yours Freya.
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January 20, 2015 at 4:16 pm
Thank you for sharing this. Fiona was indeed a remarkable girl/woman, I also believed she would win the battle, she always had done. Deeply missed. Anna Maynard
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November 21, 2014 at 11:59 pm
Today was Fiona’s Memorial Service, which was lovely The church was packed to the rafters and those who spoke paid tribute to her vibrancy, her deep love of her family, her ability to make each one of us feel special and how we all miss her so. She had planned a lovely service and wanted us all to smile when they played “Lord of the Dance”. I shall forever remember Fiona and all the great things she did when I hear that again and in the meantime we all carry a little bit of Fiona’s optimism and wise words with us wherever we go.
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June 18, 2014 at 5:49 pm
I heard the Fiona Buxton had recently died.
She will be missed. Thank You.
http://www.rbkc.gov.uk/newsroom/allcouncilstatements/cllrfionabuxton.aspx
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June 18, 2014 at 10:09 pm
Thank you for letting us know William. She will indeed be missed. Lisa x
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February 5, 2014 at 5:16 am
Thank you so much for sharing!! I was diagnosed with HGESS this past August. I have 3 young children and am only 26. I have not been able to find many stories of women who have dealt with this diagnosis. Could I please have Fiona Buxton’s contact info? I would really love to get in touch with her and to talk to someone who “gets it”!!!
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February 5, 2014 at 9:32 am
Hi Rachel – Big hug. Have sent you an email. Let me know if it doesn’t arrive
Lisa xx
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February 1, 2014 at 10:56 am
Dear Fiona,I so admire your courage and positive thought. Your attitude about letting go of negative thought and the past will be a great lesson to me! I truly admire you,you are an inspiration….Much love Sylvia
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January 31, 2014 at 11:22 pm
Very, very moving. Thank you.
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January 31, 2014 at 5:40 pm
Onwards and upwards soldier, you are truly inspiring and the blog is fantastic. I am here for you, just don’t hesitate. loads of love Myrto
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January 31, 2014 at 12:24 am
Fiona
I am proud that you are so strong – you are inspirational to your friends, your family and anyone else who has battled cancer. But you always have friends you can lean on, complain to or simply growl about not having cheese sandwiches and fat cakes. Lots of love from me – I’ll visit next time I’m in London.
Isabel x
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January 30, 2014 at 2:48 am
It is important to share the message of hope to people who have received the medical message that lacks hope. The work of the Gawler Foundation is phenomenal. Keep it up. Be happy. Be well. Jane
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January 28, 2014 at 11:43 pm
Keep on battling. We’re thinking of you daily.
love
Russell and Sarah
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January 28, 2014 at 10:38 pm
Wonderful and inspiring. Fond love, ONI
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January 28, 2014 at 10:22 pm
Dear Fiona, thank you for sharing. I am thinking of you and praying for you. Irene xx and oo
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March 9, 2014 at 8:05 pm
You have a wonderful heart. Love…
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January 28, 2014 at 6:36 pm
Beautifully written! Very moving to share this journey with you.
Love, Erik
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January 28, 2014 at 5:21 pm
Just wonderful, Fiona, so great to read about your new way of thinking and living, very inspirational to me
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January 27, 2014 at 9:38 pm
Your courage is humbling.
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March 11, 2014 at 3:47 pm
Fiona inspirational and a lesson for us all. xxjoy
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