Guest blog: Diagnosis – from despair to new life

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.