Three Years Today!

It’s official.

Three years ago today my husband and I sat in a small office at Breast Screen with a doctor we’d never met and a counsellor I’d seen twice before to receive the news that I had triple negative breast cancer.

I was pretty sure before the appointment that I was going to receive a cancer diagnosis. I’d seen the three (later four) suspicious cloudy blobs on the ultrasound and read the concerned face of the doctor taking the multiple biopsies.

I’d cautiously and reluctantly read up on breast cancer but I’d never heard of triple negative breast cancer. I thought they’d tell me there was no urgency and that I had several weeks to think about what I wanted to do next. Instead the doctor asked if I had my usual doctor’s phone number on me so that I could get a referral to a surgeon as soon as possible.

“The cancer you have is much more aggressive than most breast cancers. You need to regard treatment as somewhat urgent. I wouldn’t leave it more than two weeks.”

My father died of bladder cancer at 58. I used to imagine how odd it was going to be to reach 58 and realise I was now the age that Dad was when he died. Suddenly 58 felt like a worthy goal rather than a curious milestone. I was convinced that I was going to die.

I wandered my garden sobbing. Not since my Dad’s death had anything been so upsetting. This was a kind of personal death. No more dancing through life as if it was going to stretch on and on for decades. No grandchildren. Perhaps not even being here for my daughter’s marriage. All of the joys of my future, suddenly squashed under the weight of a cancer diagnosis.

In a cruel twist of timing, my daughter was in China at the time, holidaying with her Dad and his partner and the love of her life. We had already had days of painful discussion about whether or not to let her know that there concerns about my Breast Screen results or whether to wait until she came home.

On the one hand, we didn’t want to spoil her holiday but with social media we knew that keeping it a secret was going to be impossible. My close friends were supporting me through the weeks of anxiety. (I still wonder why I didn’t just see my doctor and have the biopsy done privately! I would have had the results in days and not weeks. Shock.) Zoe was bound to pick up on the fact that something was wrong and to be very angry about not hearing the news before everyone else.

So I made the hardest phone call of my life.

With the experience of a police officer whose given death messages I told her plainly and quickly. There’s no point drawing this kind of conversation out. It just builds anxiety. Of course she wanted to get on a plane and of course I convinced her there was nothing she could do here. But how I wanted to hold her.

The next day she posted to Facebook: “I know I should say something deep and profound here but all I can think of is ‘fuck cancer’.”

It was a gift. I’d dug my own grave and was stretched out in the bottom of it. I was convinced that my father’s DNA, the stress of my previous occupation and the usual collection of unhealthy habits had collided.I was going to die. And then with one angry sentence my daughter turned me around.

I climbed out of the hole and decided to fight. I decided to do everything I possibly could to beat cancer and to stay well. I spent hours on the internet researching triple negative breast cancer. I read books about cancer treatment and dealing with chronic illness. I started this blog. I hoped that writing about treatment would help me to stay on track (it did) and that perhaps sharing my experiences would benefit other women (it has).

It can be difficult to find information about triple negative breast cancer that isn’t terrifying, so I also started a Facebook page and started sharing information about current research, along with small chunks of inspirational thinking that helped me to avoid falling into hopelessness.

Back then I compared fighting cancer to climbing a mountain. I’ve got a better analogy. Cancer is like suddenly discovering that the path you’ve been walking on is unstable. It collapses beneath you and you slide, quickly and dangerously, down to the bottom of a deep, dark pit. On the way down you get injured. The extent to which you get injured is partly determined by how you handle the fall. The rest is luck.

When you get to the bottom you have to make a decision: Stay and die or try to climb back out again. You know the climb will be long and difficult. You know there’s a risk you could back-slide, or wind up right back where you started. You don’t know whether to go back the way you came (because at least you know the risks) or to try climbing out using a different path. So many choices and none of them are clearly better.

As you climb you find there are other people on the same journey. Some of them shout out advice to you but you don’t know if their progress is any better than yours. Some of them fall past you and you never see them again. Some days you feel like you’ve made great progress and other days you slide back towards the pit, terrified that the slide will go all the way to the bottom again.

Your medical team fly in from time to time and drop supplies. Sometimes these make the climb easier and sometimes the weight of them makes you want to sit on the side of the slope and cry.

Way up ahead, towards the light, you can see researchers building bridges and stairs. If only you can stay climbing long enough to reach them.

More people slide past you on their way back down. You want to call out encouragement to them. You want to tell them not to give up and to climb and to keep climbing, but part of you knows that everyone has to make their own decision. There are no right answers.

Finally the edge of the cliff seems within reach, but you’re so tired. This is when a lot of people give up. You know that. It looked closer than it really is. It seemed within a days reach but that was weeks ago. The people that love you are up there in the light, calling down to you. They’ve been there the whole time. Even when you couldn’t hear them. So you keep going.

One day at a time.

Just keep going.

And then the ground starts to become less steep and your progress feels more certain. There are days when you can actually start to enjoy the scenery. Recovery seems possible, even likely, but you can’t trust it. You keep going.

I don’t know when I made it over the edge of that cliff. Was it today? Was it a few months ago when my doctor ordered my three year scans early and I got the news I was cancer free? I don’t know. I feel as if I’m out of the pit now and back on solid ground. Life gets back to being about gardens and friends and good food and laughter. We talk about cancer as if it’s history.

But here’s the truth.

Once you’ve had that path drop out from under you it’s unlikely you’ll ever trust solid ground. It seemed safe the first time around, just before you fell into the pit. You know now what other people don’t; the path can always drop away at any time. This was always the truth. Maybe this is what they mean by ‘ignorance is bliss’. We would all prefer not to know this.

And so we all make a decision. Do we stay frozen by fear or set out on the path again?

Slowly, slowly I have crept forward over the last year, testing the ground beneath my feet. Eventually I decided I will never be able to trust it. I also decided that it’s okay. Not trusting it has made me exquisitely aware of the beauty in the every day.

I sit here typing, sharing my thoughts with people I will never meet, watching the sun warm up the winter garden. There’s a heavy dew this morning and the light is refracting. When my daughter was tiny we would watch the rainbow sparkles and call them fairies.

Today has music and ageing cats and Graham’s sourdough. Today has laundry to fold and firewood and theme music. Later, we’ll head out to lunch with my very adult daughter and her lovely partner to celebrate his birthday. We’ll catch up with his lovely parents and eat great food and laugh.

Life goes on.

 

I am grateful for still being alive.

I am grateful for all of the people that helped me get here.

Thank you.

All of you.

Whether you’re someone on my medical team that provided primary care, one of the many amazing nurses that supported me or one of the cheerful receptionist that greeted me (never doubt the difference you make).

I am grateful to all of the people that contributed to my care and recovery; to the woman at the wig library, to the staff at the local restaurant (Reef) that cheered me on, to the stranger in the waiting room that said “You look great today!” when I had no hair, to the young woman behind the Coles checkout that cried and hugged me. To everyone that smiled and didn’t look away. Thank you.

Thanks to all my virtual friends, whether through this blog or Facebook or the BCNA site. Your support and humour has often been a candle in the night.

To all of my real world friends, old and new, that hugged me and held my hand and drove me to treatment and took me walking and fed me and loved me. I am truly blessed to have you all in my life. And to those that stepped back or moved away, I wish you every happiness and please know I understand.

Special thanks to my yoga teacher, Emma, and my massage therapist, Maryanne. You have both made significant contributions to my physical and emotional recovery.

To Mum, for being stronger than I knew you were and for stubbornly refusing to accept the possibility of my death. I love you.

To Zoe, for telling cancer where to go and for being my single greatest reason for living. For continuing to study hard and live well when you had every reason to fall in a heap. Mummy’s better now, Sweetheart. I love you more than all the leaves on all the trees.

And finally to Graham. I don’t know how I would have coped if this had been you and not me but I couldn’t have done it better.

For starting all of this with “You are not your breasts and nothing is more important to me than keeping you alive and if you have to lose them then that’s what we have to do.” For being the only person that could make me laugh when I’d given up on laughing. For helping me to really understand why a good marriage is so much better than being alone.

Most of all for this:

The night before my double mastectomy, when I asked you if you wanted to kiss my breast goodbye, you said, “No. I’m over them. They tried to kill you.”

And the next day when they took the binder off to check my wounds and I had horrible tubes sticking out of me with bags attached to collect the fluid and even the thought of it all made me gag, you didn’t leave the room and you didn’t flinch.

You’ve never flinched. You’ve grieved and you’ve worried for me but you’ve never looked at me as if I was damaged. I’m just Meg to you. I love you. I didn’t think I could love you more than I did when all this started. I was wrong.

I was going to use today to wrap this blog up and say goodbye. I thought it might be time to move on, but I’ve realised that owning the whole experience and integrating it is part of my recovery. It’s healthy to keep hold of the whole experience and to move forward informed by it. Life can be better after cancer.

On to the next thing.

Love to all.

I am deeply and humbly grateful. Thank you.

Meg

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8 thoughts on “Three Years Today!

  1. Hi Meg,
    It has been a long road, this TNBC trip, and we have both climbed out of the pit! Now that you have reached the big 3 year mark ( and I have reached the big 4 year mark) our statistics are in our favour for the first time, and it’s a great feeling. There are days when I don’t even think about it any more and I am so grateful for that. Your blogs have been a wonderful source of company, knowledge and companionship, and I will miss your input. However I understand the need to leave cancer-land and return to our best version of normal. I have done it and it feels good. I want to wish you and Graham every happiness in the future. We are so lucky to have had husbands who were our rock and always positive in their outlook. Take care, Meg. With warmest wishes, Michelle R xx

    • Thanks so much Michelle. Don’t worry. I’m not going to stop writing. I’ll keep stopping back here from time to time when I feel like I have something to write about. I’ve also taught myself how to build a web site (very good for fighting the cognitive degeneration!) and you can find it here:http://grownourishlove.com

      It’s where I write about non-cancer related things.

      Much love
      Meg

  2. I love you Meg
    What an experience you have had and shared with us
    Pleased you married that wonderful man
    You made me cry
    So many more days to enjoy
    Lots more gardening to do
    Love you my friend
    Khadijah xxx

  3. I am right in the middle of my journey. 2 Chemo treatments in and feeling crappy. TNBC…I had never heard of it until I was diagnosed. Thank you for sharing your success and congrats on 3 years. It helps me to know there is a light at the end of the tunnel and it’s not a train!

    • Hi Cyndy,
      Thanks so much for your comment. My two best thoughts at that stage of treatment were these:
      It is what it is
      This too shall pass

      There’s some great new research on the benefits of exercise straight after chemo. I know. It seems like the LAST thing you’d want to do but have a google and take a look. There’s also some research out there about fasting prior to chemo. The extent to which you want to use these strategies, like everything else to do with treatment, is a personal choice so it’s also fine if you just want to go with the flow. I’m all for helping people know the options and make the choices that work best for them.
      My very best wishes with your treatment. If you search the blog there’s a few entries about dealing with chemo that might be helpful.
      Love and gentle hugs
      Meg

  4. Hi Meg
    I was diagnosed with tnbc in December 2014. I am now back at work in a stressful full time job and wondering what I am doing. Within 3 days of each other I got news of my manager diagnosed with bc and another colleague with end stage tnbc who has 3 months to live. It was a slap in the head for me. I am about to resign and refocus on what I need to do to stay healthy. I have read your blog and I admire the way you have approached your recovery. Can I ask you about your diet? Do you eat dairy? I have read so much about low fat, vegan diets being adopted by people diagnosed with bc. I exercise, meditate and eat healthy mainly plant based organic food. I did the 5:2 fasting diet a couple of years ago. Interestingly, a few months after stopping it I was diagnosed with bc. I am starting it again but worried about too much weight loss. I dropped 13 kgs since diagnosis, but still in my healthy range. Anyway, I hope you don’t mind the questions and I look forward to reading more of your interesting blog entries.
    Stay healthy
    Lisa

    • Hi Lisa,
      Thanks for taking the time to comment. I really appreciate it. Here’s a link to something I wrote about how I eat:https://positive3neg.wordpress.com/2016/02/20/what-to-eat/
      And here’s one I wrote specifically on the benefits of fasting:
      https://positive3neg.wordpress.com/2015/01/19/is-there-a-fast-way-to-reduce-cancer-risk/

      You can find all of my diet related posts by searching ‘diet’ on the site.

      My oncologist tells me that without a longitudinal double blind trial she’s not allowed to recommend fasting, but that she now tells patients that in spite of my very poor prognosis and an expectation that I wouldn’t survive 18 months, I am alive, well and cancer free at three years and that fasting seems to have made a significant contribution. (this was the first time I knew they didn’t expect me to live! Glad they waited until I was two years well!!).
      My diet is not at all extreme. My emphasis is on organic food because I think that even residual pesticides are bad for me. I still eat meat but it’s grass fed, because the omega 3 and omega 6 profile is completely different to grain fed meat. I struggle to eat fish. I don’t like the taste and I think it’s becoming harder and harder to source clean seafood. If I do eat it, I stick with things that have a short life cycle, like scallops or other shellfish. I take a vitamin D supplement because of the link between TNBC and vitamin D (mine was low for years before diagnosis) and an iodine supplement because it seems to help with my peripheral neuropathy and I also have naturally low levels. I have a big jar of fish oil supplements and I struggle to take them because even the odourless kind give me ‘fish burps’. I’m about to try krill as an alternative but I need to check the research first; there’s some suggestion that it doesn’t work.

      I eat a lot more vegetables than I used to and a lot less processed carbs (but I still enjoy to occasional pasta or pizza or risotto). I drink a lot less alcohol than I used to but I still enjoy to occasional glass of organic wine. I love to eat out and will happily eat dessert if I haven’t filled up on entree and main. I love dairy, particularly cheese, and now only eat the organic versions. I’ve switched back to full cream, un-homogenised organic milk. I don’t eat a lot of dairy but I really enjoy it when I do.

      As you’ll see from my previous blog comments, the best advice I’ve ever had about diet comes from my friend, Cat; we all need to work out what works best for our bodies. For some people, going paleo or vegan makes them happier and healthier. For others it’s stressful and makes them unhappy. My plate usually looks like about 80% vegetables and about 20% protein. There will be some carbs in the vegetables and the protein is as likely to be vegetarian as it is to be meat. About half of what I eat comes from my own garden, particularly my leafy greens and herbs.

      Someone close to me recently worked with a dietician using the FODMAP diet and discovered she has a sensitivity to fructose (Apples! Who’d have thought!) and is now much happier and healthier, but if you’re not experiencing bowel trouble or gastric trouble and you’re a healthy weight then you’ll save a lot of money by just keeping a food diary and noticing how things make you feel.

      Staying well is as much about managing our anxiety as it is about diet and exercise. I think it’s essential to find a way of eating that allows us to enjoy our meals and to share them with family and friends. But that’s just me. Do what works best for you.

      Best wishes for your continuing good health.

      Meg

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