like a virgin

like a virgin

Warning this post is looooong….could induce a snooze…so sorry in advance…but the most important entry for my fellow #sexybreastcancer woman and some men (yes men get breast cancer too)…

I was invited to a local cancer centre for a round table discussion about where their fundraising money should be allocated. I’ll mention this was my first time being a part of something like this. Basically an open forum for individuals; clinicians, industry (drug companies), caretakers, survivors, caregivers, researchers, patient advocates, volunteer fund raisers or anyone touched by cancer that wants to be involved in the fight and cure.

I was very honoured to be invited to this invite only affair. We were asked to come prepared with 2-3 thoughts on what we would do if we could be in charge of allocating the funds ourselves.

So if I was stupid rich and could wave a magic wand – what would I do?! I can think of a lot of things I would do. But I thought to myself, ok, Simone, you have so many angles to approach this topic…what do you care about the most, what do you feel is lacking in our community, what are the gaps?! I was caught up in my thoughts of viewing this as a breast cancer patient vs a caregiver vs any type cancer patient vs a mother wanting the best for the next and future generations vs…vs…vs…so many versus I had to reel it in and remember what I really feel IS needed and not just put on my pomp-pomps and do a Ra Ra Ra cheerleading routine about the usual cancer suspects – prevention – nutrition – exercise – eat your greens (kale most importantly) – be positive – avoid stress – don’t hold a cell phone to your ear – don’t breathe at a bus stop – drink purified water – avoid cigarettes – meditate – avoid poutine – sleep 8 hours a night – avoid led from China – don’t paint your toenails – buy organic food – avoid negative thoughts – unplug – take charge of your health – treat your body as a temple – limit your caffeine intake – everything in moderation…

I’m offended as a middle aged cancer patient with this endless ubiquitous information dump on me. Why you ask? Because for one, I think we as a society are intelligent and well versed on prevention information already. Secondly, I got cancer. Period. End of story. People get cancer. Ask yourself now how can you help them now. The guilt for us is already there, we don’t need reminders that we didn’t eat enough f-ing kale.

So I brought it back to what I feel is lacking…although the above mentioned stuff is important but they are also very well established, obvious points. I may have only been a breast cancer patient for a short time in comparison to others BUT I have talked to many people involved in world of tumoured boobies, so I feel it’s almost like I have the equivalent of a BA in this arena…so this is where I need to focus – #sexybreastcancer

I struggled for so long with why me, what did I do to get this? As a cancer patient I do NOT want to hear about WHY I got this or what did I do to cause it. The damage is done…move on. I do NOT want to hear ‘you got the good one’, ‘they caught it early’, ‘you’re ok now’, ‘they’re close to a cure’, ‘there is hope’, ‘woman live longer lives with new treatments’, ‘at least you get new boobs’ (I’m totally guilty of loving this part at first).

My goal was to talk about woman in our community who are struggling financially. I’ll let the room of 50 passionate attendees know that we need to focus on, and what WE can do for them?!!  Yes treat the disease and educate. But what can we do NOW to help the ones who can’t access the resources that are not covered by our health care system. The ones who are suffering. Any stage…1 (caught early, yay!) to stage 4 (cancer has spread, boo no more cure for you – now only lifelong treatment).

One word: REHAB

I’ll back up a little here and give insight into my experience….I was referred to Haley Rehab after my first reconstructive surgery in April 2015, before my emergency surgery to replace the left implant because the suture opened exposing and damaging the first one (May 2015). This was AFTER I had completed the routine breast cancer protocol – mastectomy – chemo (poison) and radiation (burn). All these treatments were completed in July 2014.

Rehab came later in the process for moi. Let me tell you Rehab is VITAL and should be included alongside these treatments and from the get go…time of initial diagnosis…pre and post surgery, radiation and beginning a hormonal therapy (*the worst part*)…but I didn’t know this at the time?  How could I, I was navigating and learning as I made my way through this new f-cked up world called cancer.

Back to the round table meeting. I walked through the door, smiled, excited to tell everyone about Haley Rehab and stuck my name tag to my left chest. Yay Simone – you can finally give back, you make a difference! Be a voice for those who can’t. Is it unreasonable to take a small portion of funds and let these ladies have access to the invaluable benefits of rehab??!!

It was awkward because I didn’t have a buddy to talk too. I will add that I can talk to anybody, I got this, brave face. A lady helped me hang up my coat, and that’s when I got nervous. That’s when I said to myself ‘please God make this worthwhile, show me my purpose’. Call me loony but I have to give myself a lot of internal pep talks…I walked around the corner. People were mingling, eating, so I saw this women standing alone and I said smiling nervously ‘I guess we are supposed to mingle?’, she stopped chewing and said ‘Hi, I’m Louise Haley, I run a rehab clinic in town and teach workshops’.

Jesus. Mary. And Joseph!

I almost started to cry.

Holding back my tears I said ‘I came here tonight to talk about your clinic’….I continued ‘I believe this is what is lacking in our community, helping woman who can’t afford it or do not know the benefits of rehab’…’I can’t believe this isn’t covered by OHIP or I didn’t know about it at diagnosis!’….’I’m so happy to meet you’…’I was going to be in touch to find out  if you have a program for woman in this situation who don’t have coverage…mine only covers a small amount and that’s why I haven’t returned’.

I won’t bore you with the details of our conversation but to sum it up….apparently there is a lot of politics involved and push back in this area. What? Why?!! Is it not sexy enough? Breast cancer ladies already get free boob jobs and tummy tucks, why do they need free rehab too? Boo hoo for them…

So I will argue – would the government refuse rehab for amputees? Would they refuse coverage for burn victims? Would they refuse coverage for war veterans suffering from PTSD?

If you’re thinking breast cancer is any different it is NOT. We suffer from all of the above it’s just wrapped in a pretty pink commercialized bow with new porno boobs and a flat stomach.

What Haley Rehab offers is life changing. I can’t emphasize this enough. After cancer beat me up and spat me back out to going on living with my ‘new normal’, I was like a lost puppy who finally felt like I found a home. The theme song of Cheers could play in the background when I arrived and went on with my first couple of appointments. I was like a virgin…touched for the very first time…This clinic offers physiotherapy, nursing care and massage therapy…on and on. MOST importantly they are specifically trained to treat breast cancer patients – 85% of their clientele are BC ladies.

This is beyond important because not only do we need pre surgical care and guidance, but we need after care and education that you do not receive in hospital for:

– massage and training on how to treat your mastectomy scars (who knew?!!!)

– lymphedema risk reduction strategies, education and treatment (your arm can swell up at any time)

– post surgery guidance to avoid all kinds of complications

– mental health support (very crucial)

– massage therapy (they are trained to detect recurrence, perhaps a small pea sized lump or anything and are obliged to let the patient know to contact their oncologist)

– and so much more

If interested here’s a link to an insightful explanation of why physiotherapy/rehab is critical for breast cancer patients: http://learn.phsa.ca/bcca/breasttumour/harris6sep2011/Harris_flv_loader.html

While going to Haley Rehab I was validated, massaged, nurtured, guided, embraced, understood in ways that I couldn’t have envisioned.

Once you are ‘out of the danger zone, out of the system’ rehab is key to recovery and as mentioned also at diagnosis.

In the end I didn’t get my point across because it wasn’t the right audience. And I hate public speaking. I did say a few things but realized also that if I want to spend my energy giving back and advocating for this, I’ll need to focus on shifting the traditional thinking around breast cancer treatments and push innovative thinking. Actually, it is not so innovative it’s been around for almost two decades but sadly blocked by politics i.e. money.

How does change happen? How can we shake things up and get people’s attention to important needs for the sufferers? I bet if Mr. Trudeau’s wife got breast cancer (god forbid) we’d have more specialized breast cancer rehab clinics throughout our country than Tim Horton drive-thru’s or have a spread in Vogue. A girl can dream.

Dear the Honourable Mr. Justin Trudeau,

Are you listening?

Sincerely,

Breasts in YOUR city.

No matter what stay of breast cancer you are in on your journey please seek the opinion of a specialized physiotherapist to reduce your risk of getting lymphedema.

Here’s a picture to give you an idea of my assigned exercise for the first month after my double mastectomy. Also, you know the movement of making snow angels?…that was the only movements I could do….it took me over 6 months for me to get my left arm above my head. so hot. baby steps.

post mastectomy exercise

 

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