A new take on Cluedo

Was it Ms. Queue in the Waiting Room with the norovirus?   Dr. Boob in X-Ray with the mammogram machine?  The Reverend E. Coli in the WC with poor personal hygiene? Sir Sausage in the Canteen with his undercooked meat?

Cancer cluedo

Welcome to a new take on Cluedo.  Here are the rules:

  • Cancer may not kill you if you take action early enough, but it’s fickle so it might.
  • Not all breast cancers show up on mammograms, but they’re still cancers.
  • Medical errors are on the rise, including over-prescribing (my personal favourite & a near miss with steroids), under-prescribing & prescribing the wrong drugs altogether.
  • Trivial illnesses – food poisoning, flu, fevers – can all become life-threatening while undergoing chemotherapy.
  • Chemotherapy can stop cancer, but cancer is fickle and can recur.
  • Primary breast cancers do not kill us. Metastases do.
  • Genetics is far more complicated than the BRCA1 and BRCA2 genes. Their DNA friends TP53, ERBB2, CHEK2, CDH1, AR, ESR1, GRB7, STAT1 and others all take part.

Now we know how to play, let’s look at the players.

I’m the fifth generation of women to tackle breast cancer in my family.  It goes back through my ancestors for over a century.  At some point in future I’ll post our family twig. I have to label it a twig because calling it a tree would fail the Trade Descriptions Act.  It used to be a tree, not a Giant Redwood or a mighty Oak, more like a lithe Silver Birch or tall Scots Pine.  It qualified as a tree until the players who played before me all developed breast cancer between the ages of 39 and 43.

Discontent that Dr Boob had assaulted my Mum with breast cancer, Cancer Cluedo handed her ovarian cancer too. Any geneticists out there might be thinking aha, BRCA. We’ll talk about that later.  Colonel Chemo came along as is the case with breast and ovarian cancer and various metastases.  He saw to it that Mum got every complication imaginable, including a fatal pulmonary embolus.  Kids, please do not try this at home because it is not to be trifled with. Dying this way doesn’t include hand-holding, poignant farewells, a slow closing of eyes or gentle drift towards serene eternal sleep. It scares the bejesus out of anyone unfortunate enough to witness it including the medical staff.  My Mum fought hard for several years and succumbed to Colonel Chemo and his complications aged 47.  In her case treatment proved worse than the disease – it was the ultimate reason her life was cut short.  Breast cancer, however, was always the original reason and the disease was pretty damned awful. We miss her every day.

Miss Metastasis took care of my Aunty Jen.  She was 8 years older than my Mum so the game we witnessed her playing was a game we were all too familiar with when it decided to choose Mum next.  Aunty Jen had many surgeries and many chemos, more than I can remember because I wasn’t that old when it all began.  She was a healthy, slim, active woman before Cancer Cluedo rolled the dice.  She was tough too, much more so than her tall willowy frame would have anyone believe.  Bone (and brain) mets were her nemesis at age 50 but to ensure the full rules of the game were played out, breast cancer broke her hip for good measure before she was allowed to leave what was left of her life.  Call me insane but for some reason I still believe life is brilliant, a beautiful gift to be celebrated above all others. I’m also rational enough to appreciate life can be brilliantly cruel. Love you Aunty Jen.

I didn’t know any of the women who played prior to my Mum and Aunty Jen.  I have a few photos but these ladies all died before the age of 50.  They’re part of me but they’ve always been shadows, permanently out of my reach.  My Grandmother died when she was 46, my Mum was five and it was another 15-ish years before I would be welcomed onto the planet. My Great Aunt played the game too – same outcome aged 45.  Then we have Great Grandma and Great-Great Aunt, Great-Great Granny and Great-Great-Great Aunty  (I think that’s how it works). Over a century’s worth of decent human life; hard-working, prudent, active women all quickly extinguished by a couple of rounds of Cancer Cluedo.

Looks like there’s something sinister in the water doesn’t it?  Except we all moved around, lived in different districts and had different water suppliers.  Maybe it’s something to do with having babies late?  Unlikely, many of these women had their children young and thank goodness otherwise there’d be a trail of five-year-old orphans strewn throughout the family.  Not enough breast-feeding? Nope. Early menses? Possibly but the gals are all dead so no-one can check with them.  Bad lifestyle, diet, inactivity? Definitely not, these ladies worked hard, extremely hard and they were all slim until pumped full of cancer drugs.

What are we left with in this game of Cancer Cluedo?

Genes.  BRCA1 and BRCA2.  As the only live subject available for testing, I took the BRCA test.  I was concerned about it, not for me because I’ve already got cancer so just have to get on with it.  I was concerned for the rest of our family twig. My brother and his children – especially my gymnastically gifted niece. My own son and the children he might decide to have in future who, by the way, I intend to spend several decades with.  I suspect I’ll be a terrible Granny because I’ll teach my grandchildren to make strawberry shortcake by liberally dusting icing sugar throughout the house.  I’ll also introduce them to the fun of pop-art via indelible flourescent paint and straws.  Imperfect I may be but I intend to be here with them for a long while and as penance I’ll clean up my son’s kitchen and repaint his house because I’m actually pretty good at those things 🙂   But I digress.

The BRCA tests show I don’t have these gene mutations and it therefore stands to reason my ancestors didn’t either.  I’m extremely glad for my family’s sake that this is the case. I cannot, however, believe this legacy is wholly coincidental.  That there is no involvement of General Genetic Disaster or Major Mutation loitering in the hushed and dimly-lit library of our lives with some potentially lethal weapon is just to fantastical to imagine.

If this was all coincidence it stands to reason that I should have won the main prize in the national lottery, euro-millions and foxy bingo.  I would have backed the past four winners of the grand national and the rugby world cup.  I’d be able to turn simple tap water into wine.  Folks, I have done none of these things… Ok, I turned blackberries into wine when I was a teenager but that’s cheating.

Cancer Cluedo, A Game of Chance. And genes we have yet to fully understand.

 

Image credits: Google images and the respective owners

 

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4 thoughts on “A new take on Cluedo

  1. Your research does you credit, as always. There is obviously much much more still to learn, which is why it is imperative that as many ‘sufferers’ as possible take part in any Genetic Study available to them. Thanks too to Vicky for her open attitude towards this scourge on decent women. God Bless you both, and all others worldwide.

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    • I take my research with some seriousness and follow the leads within leads to find what “truth” I can. The problem is it’s a deep, complicated and sometimes contradictory truth so sorting the wheat from the chaff can be difficult. I do have 20 years of grad/post grad study practice to draw on which helps! The answers are, I believe, largely encoded in our genes and the interactions between them as well as the influence environmental factors have over them hence my volunteering for two studies and no doubt more in future. The truth about this is it probably won’t help me personally even though research is finding answers quicker than ever before. It WILL help future generations though and I feel strongly that there is no better legacy than that. Big hugs, don’t work too hard!

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  2. A great piece of writing!
    I agree with you entirely about the genes. My mum and aunts all died of cancer. Fortunately our type of breast cancer starts later in life – post menopause – so at least children are raised, mortgage paid and so on. I was tested for the BRAs. Results came back TWO YEARS later (I think they lost mine, really) as inconclusive. But I believe it is in the genes. And I believe it’s so much more complicated than just a couple of faulty genes. It’s probably a whole recipe book of genes, combining together in subtle ways throughout the years.
    One of your references is an article on having a double mastectomy and oophorectomy as a preventative… I’m still perplexed as to why, having had all that done myself, the cancer has come back as metastases ten years later. Did it not work, then? Have I been desperately unlucky? Or is having ten cancer-free years all they promise? Perhaps ten years is reckoned to be a successful outcome. (Damn! I was thinking about 40 years! I obviously got it wrong.)

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    • I wish you were given 40 years Vicky. I think your experience of cancer returning after 10 in spite of all you’ve undertaken is this game of chance we’re all forced to play. The word ‘cured’ and breast cancer sit together uncomfortably for me because it can come back up to 20 years later and some subtypes are more prone to that than others. The most likely explanation seems to be that minute cancerous cells set up home elsewhere at the time of the original tumour. Although medically speaking our Drs tend to focus on node status, if there’s lymphovascular invasion the cancer may still have spread without being found in the nodes. Chemo is designed to kill cancer cells anywhere but they’re exceptionally robust and medicine is still working on optimal regimes today. As I understand it from digging into treatments, risk reducing measures and the deviance of cancer cells, timing of treatments is also key. Surgery within certain periods, chemo starting at the optimal point and staying on track, surgical techniques and number of biopsies can also make a difference. Along with the recipe book of genes, the complications of environmental factors and medical interventions it still seems there are
      no guarantees for us. I think the Media make breast cancer sound like an “easy” cancer to deal with, all the talk of high success rates etc. But these are typically measured over 5 years and I personally think we should be measuring at 20. Sadly I believe it would be quite a different story and might persuade more research into preventing mets so we’re not having our bodies ripped to shreds for little or no benefit. 10 years is not enough IMHO.

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