Order and anarchy.

 

The Anarchy

 

I haven't posted about it before but I recently made the decision to stop the hormone therapy I've been on for the past two and a half years. It was a very hard decision to make and it took me six months to make it, but in the end, quality of life trumped quantity. I was supposed to take Tamoxifen for ten years to reduce the risk of cancer returning but the side effects of chemically induced menopause on my late-thirties body was just too much.

 

Since starting Tamoxifen I've gained almost twenty kilos; battled extreme fatigue and depression; had frightening bouts of vertigo and prolonged headaches; struggled with short term memory loss, night sweats and intense hot flushes that had me at my wits end. I became dependent on anti-depressants to help negate some of the side effects of the tamoxifen but that came with its own issues, affecting my blood pressure if I didn't take it at the exact same time every day.

 

My oncologist will have a pink fit when I tell her at my next check up in May. But truth be told, I just don't care. It was obvious at my last appointment that the quality of my post chemo life is of no consequence. I appreciate that my onc treats far too many who won't see remission, but when she couldn't take thirty seconds to glance at my notes and at least remind herself that I'd had a double mastectomy, I began to wonder why I'd bothered to turn up at all. The final straw that spurred me to re-evaluate my treatment options was when I explained that my fatigue was so bad I could barely get through each day. My oncologist responded with "Well, that's just life with small kids isn't it".

Given what I had been through during surgery, chemo and radiation that remark was incredibly insulting. I'm not the type to whine about my situation, I've worked hard to stay positive, even during the blackest times of cancer treatment and I know the difference between the 'normal' fatigue of life with small kids and the kind of fatigue that renders one useless.

 

That swift dismissal spurred me to think hard about how I want to live.

 

And the thing is, I really want to live, not just exist.

 

I don't want to spend the next eight years living a poorly functioning existence and ending up morbidly obese and severely depressed. I've reached my cancer treatment saturation point. Everyone has one...this is mine.

 

So, I'm having regular check ups with my GP who has a genuine interest in my wellbeing. Together we will make a plan to help me regain my health. My energy levels have already improved and my weight has stabilised in the few weeks that I've been off Tamoxifen. No more hot flushes or headaches either. I'm slowly weaning off the anti-depressants and aim to drop back down to my healthy weight by the end of this year.

 

I don't know if cancer will come back. There was no guarantee when I was on hormone therapy and there's none now. I guess that's life though isn't it...full of uncertainties. I'd rather not dwell on the what ifs and throw myself into living in the now, mothering my boys, loving my husband, being a friend, being creative, working hard and enjoying being alive.

 

 

The Order

 

In contrast to the chaos of hormone therapy, I've got a new project to work on when I'm not busy with Puddleducklane or the kids. Sprucing up the house one room at a time. Now that my energy is back I'm sorting out cupboards, designing better storage, jazzing up the interior and giving the house a pre-Autumn clean. It feels great for a neat freak like myself to de-clutter.

This week, in between playing nurse to my croupy four yr old, I've started sorting out the kitchen by labelling the recycled coffee jars that store all manner of dry goods.

 

 

Feels good to sort things out don't you think?

 

xx Em

 

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If you can't take the heat...

 

Monday...you've been an ominous start to the week.

Another sad attempt at sleep last night left me at my wits end this morning.

 

I just can't get comfortable. I used to be a tummy sleeper, many moons ago, but expanding baby bellies during pregnancy trained me to sleep on my side. When I lost my right breast it ruled out sleeping on my right side and now the left side has been struck off too. Lying on my back is making sleep scarce. I long for the day when my chest feels 'normal' enough to sleep comfortably again but I fear that reality is years away. Added to that discomfort are the hideous hot flushes which wake me up a dozen times a night and plague me during the day. They tapered off for the first few months after starting Tamoxifen but have ramped right up again.

 

Menopause, to put it delicately, is the Universe's sadistic idea of a cruel joke. Why on earth do affected women not talk about it, or more to the point, violently rage against it more openly?

 

The hot flushes come on so fiercely. One minute I'm fine, then within seconds my entire body is on fire, my face is red and my forehead soaked in sweat. My natural instinct is to strip off layers until my body cools down. I find myself flinging the quilt on and off throughout the night in a futile attempt to get comfortable. I feel so self conscious and embarrassed when I burn up in public, people shoot me quizzical looks when I become bright red and sweaty during a conversation. I'll be honest, I HATE hot flushes but more than that, I think it's outrageously unfair to have to endure period pain and hot flushes simultaneously. Menopause when you're thirty seven is just plain wrong! In fact it is entirely fucked up!

 

So...Monday started off with me bursting into tears upon waking and progressed into a truly spectacular sobfest in my GPs office during my post surgical check up mid morning. It was ugly. I could barely speak, but my GP being the intelligent and intuitive woman that she is, very quickly summised that I was entirely overwhelmed with the cancer gig. Apparently it's fairly common to experience a kind of post traumatic stress response after battling cancer. Seems obvious. During treatment patients tend to focus all their energy on surviving the disease and when treatment is over the brain then gives permission to drop the defences and emotions take over. In her words, she had been wondering when I would crack. She thought I'd been far too upbeat during my diagnosis and treatment.

 

So...I've started on a low dose anti depressant which can (hopefully) kill two birds with one stone by stabilising my mood and reducing the severity of my hot flushes. I've got more painkillers to get me through the next couple of weeks and most importantly, a referral to start seeing a psychologist.

 

I've officially started the next chapter of cancer treatment...time to start cleaning up the emotional wreckage from my little horror show.

 

xx Em

 

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Think Quick!

It's been a little quiet around here.

A very persistent headcold laid us all low for a couple of weeks and then a bout of gastro...I've been lacking the motivation to blog about anything.

I tried to write a few times but always drew a blank. Hurrah for writer's block lifting.

 

I had a check up with my Oncologist last week.

Can't say that it was a lovely visit.

 

There was talk of permanently turning off my ovaries. A choice between an injection once a month for several years (you don't qualify for PBS because you're not terminal but don't worry it only costs hundreds, not thousands of dollars per jab)...or...removal via laparoscopic surgery.

 

The studies are years off being able to report real, quantatative outcomes. They can't say just how much of an advantage this aggressive kind of treatment could give me. Putting my body into permanent menopause at age 37 is fraught with side affects. The main one being the loss of bone density. Not thrilled with the idea of brittle bones breaking when I hit late middle age. Throw in the hideous hot flushes, insomnia, loss of libido, mood swings and affected memory that I experienced when chemo put me in temporary menopause and you've got a recipe for No Thanks, I'll Pass!

 

It was a bit of a shock to be addressing this because at my last visit six months ago, my oncologist talked those options down and we'd agreed that Tamoxifen was the best course of action to suppress the estrogen that my hormone receptor positive cancer feeds on. I'm young, premenopausal and the cancer got to only one lymph node. Had my cancer spread further then yes, it would be a reasonable consideration. So why change tactic now?

 

The defeatist in me got really upset. I felt sideswiped...here are some really shite choices that will most certainly reduce your quality of life and we can't tell you if you'll get any substantial benefit but we'll sow the seed of doubt that if you don't say yes, you could be increasing the risk of cancer returning...so, what'll be?

The pressure to make an on the spot decision has always been an emotional struggle for me. I've had to make many during the course of the last 15 months and each time it's been a battle to sort out the facts from the fear.

With my oncologist and her resident both looking at me in anticipation for an answer, I decided to stick with Tamoxifen for the next ten years. I didn't think the benefits of permanently switching off my ovaries outweighed the drawbacks. Having a week to think it over, I'm comfortable with my decision.

 

I know that cancer is really just a game of odds. There is no absolute certainty and my oncologist is doing the best she can with the information she has. While I want to do what I can to stop cancer raising its ugly head again, I need to balance my treatment with consideration for quality of life.

I'm still waiting for Calvary to book me in for my other mastectomy. It bothered me that I felt I had to justify my decision to remove my healthy breast to my oncologist while she was simultaneously asking me to remove my ovaries...both being preventative measures. The mastectomy doesn't hold the same kind of risk but I feel it will give me peace of mind. I've wanted it gone since my scare in January but at my oncology appointment I was doubting my decision. I know that she just wanted to ensure that I was clear as to why I wanted it done. I get that. Still...I didn't appreciate another seed of doubt being sown into my conscience.

 

So...that's where I'm at. Waiting for surgery, still on Tamoxifen and trying not to let the defeatist in me speak too loudly.

 

xx Em

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