Live Forever

We don’t of course, or at least not physically which is probably a good thing because our bodies wear out over time. It must be quite frustrating to go from being active to inactive and mentally alert to easily confused.  Loss of independence would be really difficult for me, potentially verging on unbearable. Hopefully that day is still a long way off. Although our shells, these complicated works of art, science and sinew we call the human body succumb to all manner of things, in many ways we are immortal and we live forever.  We’re captured in photographs and stories, documents and memories. When we have children our genes live on in them and we, hopefully, always have a place in our children’s hearts.

Two people who live forever in my heart had birthdays last week, my Grandfather and my Mother. Both were very dear to me during the time we shared and both continue to play a role in my life. They’re in my thoughts, my memories, my sense of who I am and how I want to lead my life.  They were both amazing people who would never have considered themselves anything more than decent human beings and that in itself made them wonderful.

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My Grandfather spent much of his life caring for other people. He was posted in various countries during World War II including Italy and North Africa. I’m fairly sure he almost died of dysentery at one point, then contracted malaria and was seriously ill for a very long time.  He hitch-hiked the length of Italy to rejoin his unit and was very close to Mount Vesuvius when it erupted in 1944. He spent time in Austria, though I can’t remember how that came about and he told us of a mysterious and frequent whistling sound in the desert. It happened to be the sound of bullets flying past and sometimes into people. When my Grandmother was alive we used to joke that it was a miracle Gramps made it home from the war, he’d had so many brushes with death. He served with the Royal Army Medical Corps so although he was conscripted, his mission was to preserve life rather than deny it. We know that he had some truly horrible experiences and saw things that no-one ever wants to see, but he never spoke of this and he never let it cloud his nature.

When I was growing up my Grandfather was simply the best anyone could have.  He’d make things with us kids, normally messy things like papier-mâché or exciting things like dens and secret hide-outs. He’d take us to the zoo, play conkers, go fishing for tiddlers, sing songs and play games like ludo, monopoly and snakes and ladders. He also let us collect butterflies, caterpillars, grasshoppers and spiders (not in the same jar) as long as we treated them kindly and always let them go again. When I had my own son my Grandfather was as great with him as he’d been with me and my brother and although J was very young, he still has some memories of his Great Grandfather. A gentle man in all sense of the word, my Grandfather was empathic, knowledgable, encouraging and very good fun to be with. He was also an accomplished artist and musician, a good listener, hugely supportive and had a love-hate relationship with a rather large ginger tomcat my Grandparents took pity on as a 4 week old abandoned kitten.

My Mother was a kind and gentle person who always put others needs ahead of her own. Forced to leave school early to earn a living and care for her step-sister, she spent most of her early life being told she was clumsy and stupid. Today the things that happened to her when she was growing up would probably be considered neglect, or child abuse.  I know she used to clean the house and clear the fireplaces, polish the floors and fetch all of the groceries, almost like Cinderella but without pumpkin coaches, glass slippers or a ball to attend. When she met my a Father she said she knew he was ‘the one’ and her life improved enormously once she went to live with him and his parents.

My Mother had a talent for understanding people and animals, I suspect because she appreciated the sanctity of all life from an early age. She was a very loving and giving person with a strong sense of right and wrong, a placid temperament and the ability to turn her hand to almost any task.  She had a high work ethic, well-developed personal values and no ego at all. Though she was very talented, my Mother never quite believed she was as good or as talented as others – deep down she probably never completely recovered from her horrible childhood and that made her determined to ensure my brother and I never endured undue criticism, lovelessness, isolation or insurmountable chores. Because she was multi-talented my Mother spent time teaching us to make cakes and biscuits, identify plants and animals, read, write and draw, make models, build things (with Lego, scrap cardboard, or bits and bobs from the house and garden). She helped us understand that there’s no sense in violence, you should never sleep on an argument, and there is always room for another hug. My Mother loved music, the countryside, nature and her family. She found pleasure in the scent of a freesia, a starry night or a walk in the park with Dad and the dogs. I can’t ever recall my Mother asking for anything from anyone. She spent her whole life making other people’s lives easier, happier and brighter.

Grief is a funny thing. When we lose people a period of grieving is inevitable, it might last for weeks or months or years, but one of the downsides of grief is that it draws our focus towards the gaps in our lives – the people who are missing and how sad we are without them.  It can become all-consuming to the point where it blocks out the happier memories, the things we’re grateful for, and can make us lose sight of the fact that our loved ones probably wouldn’t want us to be broken-hearted, miserable or withdrawn for the rest of our lives. It seems there’s no easy way to understand this without going through the process of loss, grief, readjustment and reflection.

Although I was deeply sadden by the deaths of my Grandfather and my Mother I’m no longer consumed by sadness and grief. I can now draw on memories and stories while being happy for the time we had, the experiences we shared and the things I learnt from them. Gramps and Mum are in my thoughts and here with me every day bringing love, warmth and inspiration. I can’t wish them happy birthday in person but in my heart they live forever and we celebrate the good times.

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Misguided, 10 Myths & Missing the Point

Those of us unlucky enough to be on the breast cancer merry-go-round know all too well that the Media has a strong role to play in raising awareness. It has an equally strong role in conquering a number of misguided, often serious misrepresentations of the truth.

Sadly much of the Press around breast cancer either sexualises or trivialises the disease by portraying it as an “easy” cancer from which we’ll all almost certainly be “cured” and go on to live long, healthy lives. (Myth 1).  A short detour into the land of all things pink and plastic is nothing more than a minor inconvenience for which we receive plenty of help and support (Myth 2).  Post-treatment we’re duty bound to be happy about our good fortune and can celebrate how incredibly lucky we’ve been since developing the “best” kind of cancer (Myth 3).  We’re cured (Myth 4) so can spend plenty of time flaunting freshly reconstructed, completely flawless (Myth 5) new “boobs” that are sure to be the envy of all our friends.

This quick, simple and largely painless path from diagnosis through surgery, neo-adjuvant or adjuvant treatment (Myth 6) and on into the realms of pretty-pink, happily ever after la-la land (Myth 7) is one I’m sure my friends with breast cancer all recognise and are, like me, so very pleased about. Breast cancer is a highly desirable form of cancer and of course we’d wish for it because it’s better by far than other types of cancer. We’re very “lucky” don’t you think? (Myth 8)

No. I’m sorry to disappoint but this is not a disease anyone should ever wish for.

Unfortunately the Media recently helped perpetrate another misguided appeal that misses the point about cancer by a country mile. An advertising campaign for pancreatic cancer helps further the myths that breast cancer, or prostate cancer for all the guys out there since breast cancer is an exclusively female disease (Myth 9), is a “good” kind of cancer.  It’s so good that it’s obvious we’d all chose breast, skin or prostate cancer given chance to select from the smorgasbord of available human cancers running rampage through our world. Those kinds of cancer are so much better for us should we feel the need to acquire some form of the disease (Myth 10).

Having lost a colleague and friend to pancreatic cancer several years ago I understand the stark reality of that particular form of this insidious disease. There’s nothing good about it and survival rates are low because it’s often discovered late, when locally advanced or already metastasized to other areas of the body. When diagnosed early the outlook for pancreatic cancer is often very poor and I fully agree that further research, better diagnostics and improved treatment regimes are all desperately required.

However I also have a long standing, close-up and personal relationship with breast cancer so will offer thoughts for those – including advertising companies and the Media – who might think it’s “easy,” “curable” or presents a “better choice.”  I urge you to consider the following then tell me that you’d wish to have breast cancer (or any other cancer that might be worth wishing for) if you’re given a choice:

  • You BRCA negative but you’ve lost at least five generations of women in your family to breast cancer, all before the age of 50. Each woman lived healthily pre-cancer, went through extensive and life-threatening treatment yet still developed metastasis within a few years of initial diagnosis… Will you choose to invite this disease into your life or the lives of those in your own family?
  • You never met your Grandmother, she died of breast cancer when your Mother was 5 years old. As a teenager you watch your Aunt (in her 30’s) go through surgery, radio and chemotherapy. A couple of years later she’s in palliative care, steadily succumbing to brain and bone metastases that eventually break her hip causing unimaginable pain for the last few weeks of her life… Does this sound like a better option than other forms of cancer?
  • At 23 you see your Mother endure surgery, radio and hormone therapy. She then faces surgery and chemo for secondary liver, ovarian and bowel cancer. You’re sitting at her hospital bedside, she’s encountered yet more side effects and as you talk a treatment induced blood clot drifts into her lungs. Panic ensues and you’re ushered away. Some time later, you’re unsure how long because your head’s spinning and your heart threatens to break through your ribcage, you hear the words “I’m sorry.”  In your final moments with your Mother she’s desperately gasping for breath and has time to realise something’s terribly wrong. Decades later that image, the noise and the violence of her death are indelibly etched on your psyche… Are you going to vote for breast cancer now?
  • You’re 41 have a teenage son and partner to support. You worked your socks off for over 20 years as you’re the only source of income. Despite regular screening you’re diagnosed with aggressive, invasive HER2+ breast cancer. Your life disintegrates in a matter of months, long-term friendships, your livelihood and your son’s mental health all dissolve. You undergo gruelling treatment for 18 months that causes persistent side effects and no guarantee of success. Your family knows this as well as you do…. Can you imagine finding any of this easy?
  • You begin rebuilding knowing you’re at high risk of recurrence in the next 3 years, need to make it past 5 years and even then the spectre of breast cancer can resurface with a vengeance 20+ years later. You avoid looking at your mutilated body, your confidence wanes and though your hair’s back your scars remind you that you’ll always be a cancer patient. The physical scars are ugly, the psychological scars are worse … Answer honestly, are you still going to wish for breast cancer?

I think you’re going to say no.

No sentient being wishes for hell on earth and that’s exactly what breast cancer is, creates and leaves behind.

Perceiving one form of cancer as more desirable, easier, curable or survivable is misguided. It completely misses the point because there is still no cure for cancer and that includes breast cancer.  It is not a disease to wish for under any circumstances and the sad fact is that men and women across the globe die of breast cancer every day.  As with most forms of cancer if it’s diagnosed late the prognosis is poor but even when diagnosed early (node negative), breast cancer can creep on via micro-vascular invasion taking hold in the brain, bones, liver, lungs or skin at any point.  Treatment is no less gruelling than for other forms of cancer and contrary to misguided Press stories success isn’t guaranteed. Statistics have improved thanks to increased awareness and earlier diagnosis but far too many lives are cut short, often young women in their 30’s and 40’s.  Irrespective of type, cancer is a complex illness and outcomes depend on a myriad of interdependent factors including age, genetics, chemical and environmental considerations most of which remain poorly understood. Geographical location and cultural norms also have huge implications for diagnosis and survival, something Doctors in many African and Asian countries know only too well.

It’s unlikely people like Claire, Cancer in My Thirties or The Sarcastic Boob would wish for breast cancer given any choice in the matter. My Aunt and Mother are no longer here but I’m 99.99+% certain it wouldn’t have made their wish lists either. Unsurprisingly I did not wish for it (it came anyway) and I would never wish it for anyone else. As a sentient being I know what a god-damned awful disease this is, what it does, its consequences and all the things it ruins, breaks or takes away.

Wishing for one form of cancer over another is sadly misguided, misinformed and missing the point. Happily ever after breast cancer remains a myth in too many cases so please think very carefully. A wish for breast cancer is not the same as a carefree, pain free, cancer free life. The treatments are very challenging and you may still end up with just a few months to live. The seven point truth is this:

  1. Cancer, including breast, skin and prostate, is a killer.
  2. There are significant outcome implications based on where in the world you live.
  3. Incidence rates are rising.
  4. We are all in need of a cure.
  5. Prevention must be our ultimate aim.
  6. Cancer research requires improved funding and continued support.
  7. Many more will die before cure or prevention become global norms.

Snowdrops in Fresh Pastures