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Palliative Care Shouldn't Mean the End of Living

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I recall a couple of tears trickled down my cheek, but there was no exaggerated weeping, shouts or tantrums. I took a tissue, calmly blew my nose and held my husband's hand. We had just been told that after 9 months of treatment, including three operations, 11 rounds of chemotherapy (I'm now up to 31) and 25 zaps of radiotherapy for Bowel cancer, it had continued to spread within my liver and lungs and was deemed too aggressive to cure. I had just a 2% chance of developing bowel cancer at such a young age, yet at 34, I was being put on palliative care with a life expectancy of 6-9mths.

Since 16 November 2012, or 'Black Friday', as we affectionately call it, it has been assumed I would hide away in a corner, contemplate what flowers should adorn my coffin and cry into my mug of (green) tea, wailing 'why meeeeee'. I would be lying if I said that wasn't a difficult weekend. My husband and I discussed where my funeral would be, what songs I'd like and who should do the readings. But, staying in that place could only ever be temporary. Our two young children needed their Slummy Mummy and normal service needed to resume quickly.

So why share my story? Because I want to inspire people who are in a similar position to me to not give up on living and encourage the medical profession not to give up on us. Just because my life may be cut shorter than we expected (my husband is looking for a refund on the 'till death do us part' bit of the wedding vows just seven years ago), doesn't mean my life should be any less full.

Instead of morbidly obsessing about when I may meet my maker, as a family we have embraced life. I remain on a fortnightly dose of chemo, but in those 10 precious 'good' days, we get up to all sorts of high jinx. I have been gliding, swum with dolphins, taught my son to ski, climbed a mountain, caught my first fish, gone on terrifying rollercoasters, learnt how to make balloon dogs (very useful at children's parties!), seen my eldest start school and raised almost £1,000 by completing a charity walk 24hrs after being unhooked from my chemo machine. Later this month I'm learning to fly a helicopter. You never know when such a skill may come in handy.

And whilst I'm having all sorts of fun, conventional medicine suggests just one path for me to maintain this quality of life - chemotherapy. As Saatchi's Medical Innovation Bill gets the second reading, it is more important than ever we have an open discussion with the medical profession on how we tackle cancer. Current laws are stifling doctors from trying new procedures for fear of lawsuits. Until enough of us in a similar situation to my own challenge the status quo, encourage further research and refuse to only accept chemo, we will never make the progress in finding a cure for cancer so desperately wanted.

Despite pleas to explore new conventional treatments, I don't fit any of the criteria. So I've started exploring alternatives such as acupuncture (not an obvious choice for someone with a needle phobia!) and Budwigs, eating the disgusting combination of cottage cheese and flaxseed oil. I regularly attend yoga and follow the anti-cancer diet. I refuse to give up and accept there's 'nothing more to be done', and urge anyone else in my situation to do the same.

Living a life on chemo brings its own challenges - my fingers are frequently numb, I'm now sporting a shorter crop hairstyle and have a permanently runny nose. It has also has robbed me of previous common sense. I have sent my son to school with his trousers on back to front, ordered a random 44 yoghurts and two bottles of beer instead of the weekly shop from an online supermarket and filled my Mum's diesel car with petrol! My fortnightly blog offers a glimpse into our chaotic life, Life as a Semi Colon, which lurches from one disaster to the next. From having friends faint on me when I'm receiving the chemo and therefore requiring more medical attention than me, to my husband replacing my car whilst I was in my chemo cloud. The last 18months have provided unparalleled love and laughter.

Being on palliative care shouldn't mean being written off by the medical profession, destined to become another statistic. Life is precious, regardless of how long or short, and should be used not only to make the most of here and now, but also to make a difference for the future. Now, back to being a Slummy Mummy - what to do with those 44 yoghurt pots....

Around the Web

National Council for Palliative Care

Palliative Care Explained | NCPC

Accessing palliative care - Care and support - NHS Choices

Palliative Care Zone | NHS Inform

Palliative Care | Doctor | Patient.co.uk

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