Maybe Baby

As a woman with a career built over my 20’s and 30’s I wasn’t surprised to find myself childless in my mid 30’s. I thought I had plenty of time. But of course I hadn’t factored in beast cancer. Who does?!

So it was that post treatment and in remission I started to wonder if I would ever be able to have a baby.

The ethics alone took me ages to think through but I always knew that I was a big fan of life, and in my secular objective brain there was this powerful primal urge to pass on my energy to a new life. All that is to say yes my man and I so wanted to have a baby.

I spoke to my oncologist and she was supportive of a ‘tamoxifen holiday’ (BYO piña coladas!) of up to a year and if I hadn’t conceived by then to return to medication. This included a three month cleansing period for the drug to clear my system. The clock was ticking. Fast!!!

IVF seemed the best option. We entered it with a clear head and heart not realizing the emotional morass that is IVF and the dark times ahead.

We had a successful cycle of egg collection and of 6 viable eggs 3 embryos survived.

First embro transfer ended in the sadness of the baby not surviving.

With the second, a little heart broken, I clutched my phone as the fertility nurse apologised to me. I broke a little till I realised she was apologizing for calling too late in the day… to tell me I was pregnant!

My entire pregnancy was marked by joy and its twin, sorrow. Joy for the miracle of life, the sweet promise Snd the absolute pure wonder of life blossimg inside my once chemo ravaged body. And sorrow for my other baby, for the ebbing life and loss in my body and the possibility of more loss.

The sheer joy of birth is hard to describe but our beautiful boy was born in magnificent beauty. And seven months on I am still surprised to find this happy hilarious little being is my son. I love him dearly and am still in awe of what my body achieved despite everything I’ve been through.

#ivf #tamoxifen 

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Cycling

So, unexpectedly I’ve developed a love of cycling. At 37. With all sorts of self conscious body issues, I squeeze myself into various tight Lycra items and sail down the cycle path with my beloved.

Maybe I should start this post by saying I’ve developed the love of cycling by falling in love with a cyclist! However you cut it, there it is, the highly unexpected event of me in glorious flying colours zooming along on a road bike.

I’m hoping to do the ride to conquer cancer in October. 200km over two days. It is daunting, but thrilling. Can’t hardly wait!

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Love in the time of Cancer

Mid 2012: I was falling in love with a dear friend. It was a surprise; this gentle warmth and realisation that love was blossoming where least expected. We had known each other for 4.5 years. Been friends, colleagues, drifted apart. I hadn’t seen him for a while when we met again in June 2012. I was a mess, recovering from a break up and grieving my grandmother who had died on the 26th of May. It felt like my soul was kind of cracked and bits of it seeping all over the place. I was raw, open. And in that state I suddenly saw my very dear friend for what he was: a rare and beautiful human being full of compassion. 

He told me he had lymphoma and my first reaction was a stab of visceral pain so deep I punched him on the arm. Jeebus! Who does that?! Me, apparently. It shocked us both into laughing hilariously. Easily one of the least appropriate responses to finding out a friend has cancer. Four months later, sitting under trees in a park over a picnic of cheese and crackers; he knew how to respond to my news that I too had cancer. Breast cancer. I’d found out the day before. 5th of October. His mouth fell open in shock at first, unsure if it was my black humour. And then seeing the glazed look in my eyes he knew, and reached out and held me. I wept with a strange kind of pain and happiness. Knowing that he understood in a way nobody else in my life did. 

I didn’t know what this news meant for me. All I knew was that the biopsy from 3 days prior had found malignant tissue. The extent and necessary treatments were a blank. All I knew that if I want to hold onto him for as long as our bodies would hold together, and that I loved him so deeply that there was no room left for doubt. 

It turned out that my cancer was early stage and hadn’t spread to my lymph notes. I had an operation on the following Wednesday. October 10th. And started chemo on the 26th of November. Those weeks, between surgery and chemo, felt like the end of something. I still don’t have a word for it. The end of the idea that I was invincible, that cancer happened to other people, that somehow, despite evidence to the contrary, I would live for ever. I was overcome by an incredible sense of urgency. I thought that I only had a month to let him know how deeply he was loved. That my capability was coming to a finite end. 

14 months later, our relationship has weathered the stormiest of beginnings. I have been held and loved at my darkest moments. Made to feel beautiful when I was bald, my skin broken out in a rash, my body bloated and my mood fluctuating wildly. We came up with a ‘safe word’, my idea, to let him know if and when I was feeling irrationally angry and irritable. I feared I’d fall into a kind of madness, that I’d destroy everything. Turned out I never had to yell out ‘bitch tits’ in a fit of madness. My mellow nature won out over the cocktail of drugs in my veins. 

Now, our conversations are no longer focused on the short term battle. Now we are looking at a longer window for our happiness. I know there is more storms to come, we both know that his lymphoma, while in remission, only has a 5-8 year window before returning. And that dates from 2 years ago. But we also know that there is so much we can do in the meantime. So much fun, joy, creativity. We paint, and draw. We celebrate our ‘anniversary’ every month. We are planning travels. And even a baby. Though that last perhaps a least likely event than others we’ve planned but perhaps most wished for. 

Perfectly unremarkable

When I was first diagnosed, fear and anxiety were constant and overwhelming. I met a breast cancer survivor who told me that there’d be a time of difficulty and then a time of ease and then the day would come when all would be marvelously, unremarkably bland.

She was right about it all. Today was marvelously bland. I’m in remission, my body is strong. I’ve lost the 12 kg I gained during treatment. My hair is growing and my period is back. Miraculous. Humbling. I’m grateful for the return to the seemingly ordinary.

Coffee and tamoxifen

Link: Coffee and tamoxifen

So, my research into what to eat and what not to eat has led me to a surprising study into coffee consumption. This Swedish study looked into whether coffee modulates response to endocrine therapy in breast cancer patients.

The study found that 2 or more cups of coffee a day was associated with significantly decreased risk for early events in tamoxifen-treated patients and modified hormone receptor status. The proportion of estrogen receptor negative tumors increased with increasing coffee consumption. If confirmed, new recommendations regarding coffee consumption during tamoxifen treatment may be warranted.

Day of Miracles

So today was a perfect winter’s day. Cool, a brisk breeze and sunny.

I have a viral infection so a bit fluey and achy, but also kind of dreamy. Enjoying wearing hoodies and scarves and having a hot cup of tea. Most marvelous of all, I didn’t notice a single hot flush today. You lil ripper!!!! I probably had a mild one here or there but I was outdoors painting most of the day and it was never flushy enough to take my hoodie off.

When I first found out I’d be taking tamoxifen I googled it. Yes, I know, why?! But who is strong enough to resist? Ok so my partner has shown a remarkable capacity to rely on his specialist but I’m a fool prone to putting myself through the torture of googles. And what a special kind of hell that is!

Anyhoo, Dr Google turned up site after site of women suffering what seemed like the very tortures of hell. Burning hot flushes, bone grinding aches, mild dementia. I couldn’t fathom the depths of their suffering and was terrified of the pain to come.

In wretched fear, I googled “Tamoxifen positive experience” one account came up of an Australian woman who’d come through breast cancer and was on tamoxifen and taken up jogging. Just one across the breadth of the internets.

So here I am, surprised to be having what seems a pretty ordinary day 7 weeks into taking tamoxifen. Marvelous! Thank you Aussie jogging tamoxifen lady for giving me hope. Here is to more positive tamoxifen experiences.

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My boobs tried to kill me, I don’t want the eclairs to finish the job!

So, I’m finding this business of fund raising in the name of cancer research very confusing. I’ve loved being involved with events promoting exercise. The Mother’s Day classic was wonderful. I’m helping my boyfriend raise funds for The Ride to Conquer Cancer and will be involved as a volunteer. No confusion there.

What I do find confusing is the promotion of all sorts of unhealthy foods in the name of breast cancer. Sausage sizzles? Why eat the godawful carcinogen laden offal?! And tonight I walked past a Baker’s Delight selling chocolate eclairs. Pink ones. For breast cancer fund raising. This, despite the link between increased risk of estrogen positive breast cancer and high fat dairy. And sugar? Frack me! The more I read about cancer prevention the more I realise how important a healthy, low fat and processed sugar diet is. So do the funds raised by selling these eclairs outweigh their negative health impact? I doubt it, and can’t help but think that it is a poorly thought out initiative.

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Generic Genox vs Tamoxifen Sandoz Brand

4.5 weeks into taking Tamoxifen, I popped into the chemist to stock up in anticipation of running out of tamoxifen. After the usual waiting around forever while the pharmacist practiced the mysterious rites, she came over to apologise as they were out of the generic brand. Did I mind buying the more expensive original brand?

Given I’d thought I had bought the original brand I was quite surprised. Turned out I’d been issued the generic stuff last time. Hm. I assumed all would be exactly the same given the identical amount of the active agent in the two meds. But not so. Since starting the Tamoxifen Sandoz my hot flushes have reduced significantly in severity and a little bit in frequency. What a pleasant surprise. I’m not sure if this is some placebo effect or there are others who have experienced the same but it is a delightful surprise either way.

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Tamoxifen – one month in

Well it has been just over a month since I started tamoxifen. I had dreaded it for a long time, dreaded it more than I dreaded chemo and radiotherapy. It seemed like such a horrid sentence, I read woman after woman’s account of suffering and pain. Sexual dysfunction, aching joins, mood swings, weight gain and the fog of depression.

I tried my best to prepare for it. How? Well, exactly! How does one prepare for something one doesn’t comprehend?

Since my diagnosis, I catch myself making the same mistake time and again. I try to pre-empt my experience by reading about the experience of others. As if research will lead to a magic door through which I can jump safely to the next phase. But what this has done is make me imagine a far more difficult scenario than the reality. Tamoxifen has been the same.

So far, I have had some of the expected side effects. My hot flushes, previously caused by zoladex injections intended to protect my ovaries and ‘chemopause’, initially became less frequent and then suddenly took off and occurred about once an hour. I also felt a bit emotionally flat and irritable a few times but to be honest no worse than when i used to have PMS. The surprise has been how well I feel at other times. I have felt the quickfire flow of my hormones working and my body coming to life. It has been amazing! I was so moved the first time it happened that I wept with happiness all over my poor confused boyfriend. It was lovely and such a humbling surprise.

As to weight gain, well from the time of my diagnosis to the end of chemo I had put on 6 kilos. From the end of chemo to the end of radiotherapy I out on another 6. A total of 12 kg (26lb). I was trying to break it down into how I put on so much weight. A lot of it was comfort eating. Skipping meals because I was tired then dragging myself to an eaterie and eating beyond the point of comfort to fill up till next bout of eating! Terrible. I ate out almost every meal. Some of them were just eating out to treat myself to an experience of socialising without having to talk to anyone when I was tired and grumpy and radio singed and couldn’t be arsed pulling myself into a decent enough human shape to converse with any semblance of generosity.

But now time to share the good oil on the tamoxifen. My tummy stuck out the first few days, but I’ve been on a very strict diet the last 3 weeks and already lost 6kg (13lb). Tummy has flattened since I cut out bread and replaced it with rice cake and crackers. I was told menopause would severely slow down weight loss, but that hasn’t been the case.  The weight seems to be coming off pretty quickly. My meals are simple, one type of protein with lots of veges each meal. 3 meals a day. Crackers and 2 fruit a day for carbs. I take multivitamins and fish oil supplements. Drink lots of water. Eat grilled fish and salad, a simple omelette or a tofu stir fry. I miss eating just for the sheer pleasure rather than to lose weight, but am so pleased and feel so much better due to the good food I’ve been eating that I’m happy to keep going till I lose the next 6kg.

I’m also delighted to report that the ‘reduced cognition’ (code for being foggy headed and forgetful) hasn’t presented itself as yet. May it never present itself! My brain is sharpening up and I’ve been able to get back to work and get things done. Hooray! Life is going along beautifully, interrupted by the odd hot flush, but it’s nothing like the grim suffering I’d expected. The cooling weather as we move into winter makes hot flushes so much more bearable. I just take off a layer and face the chill breeze and am so very very grateful. Hooray for experience exceeding expectation 🙂

Winter is coming!

Winter is coming!