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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Oncology Overload

I had my oncology consult this morning.

It was quite a confronting few hours.

As I sat down in the waiting room the realisation hit me that I was the youngest person in the room by a good ten or fifteen years. The majority of patients were between sixty and eighty and I felt very much out of place. A youngish newbie who didn't really know what she was in for...not a jot!

A nurse called me in to get my obs and wouldn't you know it, I've lost six kilos since the Big C knocked on my door. Ironic that it took cancer to relieve me of all that Christmas Cheer and get me down to my goal weight. Fairly fast weight loss program but not one I'd recommend. I'd prefer daily exercise and a decent diet over surgery, drugs and immobility.

I met my oncologist Dr Davis shortly after, whom I immediately liked, and we sat down for an hour long discussion. In hindsight it was probably the one consult that I really should have brought someone else along to. The sheer volume of information was quite overwhelming and by the end my brain was imploding.

Essentially, after a very comprehensive consultation Dr Davis recommended the TAC chemotherapy schedule which involves six rounds of chemo administered via IV once every three weeks. TAC is short for the chemo drugs Taxotere®, Adriamycin® and Cyclophosphamide.

Just a sample of side effects include:

Infection due to low white cell count, Nausea, Hair Loss, Mouth Ulcers, Numbness in fingers and toes, Heart damage (potential permanent heart failure, oh yay), Menopause and Blood clots. Some are relatively commonplace, some are very rare. A game of wait and see. Thankfully our family is complete so fertility issues need not apply.

Because my cancer is estrogen receptor positive I will start hormone therapy after chemo which will mean taking Tamoxifen once a day for a minimum of five years and possibly stretching out to ten based on current studies. Food for thought was also removing my ovaries down the track. Side effects include early menopause, cancer of the uterus and blood clots.

After all of that rather delightful information was delivered I saw the head nurse and we discussed the issue of my veins...or rather the lack of nice plump veins remaining in my left hand since the right one is out of action post surgery. I had to decide if I wanted to have a central line, also known as a port, inserted under the skin in my chest. The pros were that chemo can be administered and blood can be taken without the risk of veins collapsing halfway through the treatment. The con...infection and clotting, general anaesthetic & surgery to insert and remove the line etc etc.

I just wanted someone to tell me what I had to do. My mind was in meltdown. I didn't really want to have a port if I could help it but didn't know if the two half decent veins I had left would hold up for 5 months of chemo...geez louise, I don't know! I had to make the decision then and there and in the end I decided to hope for the best and not get the port. Worst comes to worst, if my veins are kaput by round three or four, they'll wait until my white cells are high enough and I'll get the port. Risky but then this whole ride is riddled with risk.

Next was the chemo education session with the nurse which was another 40 minutes of re-enforcing everything that my doctor had discussed with a whole lot of practical advice about coping with the chemo and a tour of the treatment room. The nurse had a great sense of humour which helped. Still...I walked out of there carrying a small mountain of paperwork and pamphlets feeling dazed and overwhelmed.

Where was I to begin...how could I start processing it all?

I wandered slowly through the corridors of the hospital, made my way back to my car and sat staring at the dash. I needed a quiet place to think. I realised that I'd forgotten to have breakfast in the rush to get Harry's lunch ready for preschool...I needed something to eat and I needed a strong coffee. I found myself driving to Manuka to Urban Pantry my favourite little haven, grabbed a seat at the back and ordered soup and coffee. I spread my stack of papers and my diary out on the table and started making a To Do list. I'm a list girl, always have been always will be.

First things first...booking all the tests required before chemo began. Bone scan, heart scan, ct scan of chest, abdomen and pelvis and several blood tests. I consumed a comforting bowl of cauliflower, ginger and corriander soup with sourdough toast which helped ease the shakes. Once the practical tasks were organised in my diary I packed the rest up and had my coffee. I couldn't read the other booklets. It was just too much in one hit and I was fighting hard not to burst into tears.

I paid for lunch and walked across the small green to a little shoe boutique. A mecca of beautiful shoes. Beautiful expensive shoes. I bought a lovely pair of Aubrey London leather flats and didn't care a wink. Then I went into the bookstore and bought a beautifully illustrated edition of Alice In Wonderland for a dear friend who gave birth to her beautiful baby girl yesterday...a little girl called Alice. I still felt numb and turbulent and lost but I was surrounded by beautiful things. I needed a bit of beautiful to help cancel out all the ugly that had invaded my morning.

Then I came home to a very happy little boy regaling tales of preschool and new found friends. And a message from a beloved friend from far up north which included this...

Encouragement, perfectly timed and gratefully received.

I will give myself the time to work through this information. I will allow myself to feel how I feel. I will accept comfort in all its beautiful forms. I will believe in the above affirmations. I will get through this, day by day.

It is all I can

 

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