Move Over Pinktober, Movember is Here and I’m Still NED
So for much of PInktober I sustained from my social media addiction and kept advocacy to a minimum. One video, one interview to the paper, and one blog spotlight for Metavivor - an advocacy group dedicated to the specific fight of women and men living in the US with stage 4 metastatic breast cancer.
Initially I was pretty damn grumpy about the whole Pinktober thing - pink toilet paper, vacuum cleaners, snow brushes, coffee to go cups, NFL garb and so on. Plus angry people discussing pink-washing. Pink fracking drill bits - really??????
One morning my husband asked me why it made me so aggro. All that awareness and research has saved my life and led to TWO !!!! NED !!!! scans. (No evidence of disease) And, of course, he’s right. However, I still feel strongly that many other cancers lack their time in the spotlight and that metastatic disease in general lacks awareness and research dollars. I just learned that in Quebec, women like me, can’t get Perjeta paid for. Sounds like a bad broken record. Think before you pink!
Which brings us to Movember. Mull before you Mo? Study before you Stache? Do you donate every time you post a picture of yourself with a stache? Or grow one? Do you research the real issues facing those with prostate and testicular cancer?
It’s a month dedicated men’s health including common and sometimes life threatening cancers - those below the belt. The NHL is sporting mauve chin straps on helmets and growing the equivalent of play-off staches. But once again - how much does anyone know about METASTATIC prostate cancer? It seems that about 10% are diagnosed with it at initial diagnosis and a significant number develop it. It is NOT curable and can only be “managed’ for quality of life and longer survival times. Often prostate occurs in older men so other causes of death intervene like heart disease before cancer takes them.
Younger men are the ones that get testicular cancer which, despite good odds, also comes with a risk of developing metastases.
A controversial paper was recently released suggesting that PSA tests were not helpful. I listened on CBC as many men called in to say that the PSA test saved their lives. Isn’t it interesting that they have also made the claim that women’s self breast exam and mammogram also aren't as valuable as once thought? Yet I found my own tumours. Does this mean that we have made no gains with early detection and treatment despite the billions of dollars that have gone into it? The stats tell us that early stage prostate, testicular and hormone positive breast cancer have 5 year survival rates over 97%. Yet I know that 30% of women with all stages of breast cancer develop mets and, in one article, as many as 50% of men do with their respective cancers. This math doesn’t make sense
Despite all this, in my case, I will argue that because of all the HER-2 research being done, my life expectancy and quality of life has improved significantly compared to a woman 10 years ago.
Maybe what I’m seeing here is a total lack of transparency. Lack of clear awareness and education being shared out there. Perhaps that’s what I am angry about.
As we told you before we’ll tell you again - #realcancerawareness is in the eyes of the person with cancer. So take some time to get to really know the issues - the financial strain, the depression and anxiety, the stress on the caregivers…..
If you are wondering what I’d like for Christmas I’d like this video shared far and wide as often as possible. And for you to donate to individuals in need with cancer - I’m sure you can find many online or on social media.
On a personal note I am doing quite well health wise. I’m still in chemo every three weeks and on a shipload of medications to manage the side effects. I spend many hours in bed managing my nausea and fatigue. I still have panic attacks, fears and nightmares about the return of the beast. But i’ve been branching back out into the land of the living. Planning to run a small 5 km Santa Shuffle early in december for which I’ve been training, helping with community youth band one night a week, playing at yoga more often, developing a concussion support group along with Sea To Sky Community services and VCH, applying for a position on a breast cancer agency board, assisting Sabrina’s class on a 4 day outdoor school trip 24 hours a day and considering taking over my dear friend’s warrior baskets for those newly diagnosed with cancer in the corridor. All the while trying to keep up with parenting my early teens and taking care of two pups. During all this my husband holds us all together and keeps our home clean and happy as much as he can. I’m doing too much really and not pacing my self as much as I should. But damn, I’m happier being back in the land of the living too much to back off now.
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