Tipping the balance… the year that was and the year that will be
It’s the last day of the year, and of late I’ve been reflecting a lot. This week I was reading something I’d written at the end of 2017. I was going to post it for new year’s eve last year, but before I could, Mooch had her little drama with running off, getting hit by a car, and eating fishing wire. So I didn’t get to post it. But I was reading how amazing the year was. How I travelled for 5 months solo through Asia and Europe. How I met Jen and started a relationship with her. How I got the much wanted redundancy from work, and decided to have a few months staycation at home, spending time with Mooch and friends, writing, and doing house things. How I travelled to Vietnam with Hana and Tisha. How I started a new job which was far less stressful than the last. And how I travelled to NZ and spent xmas snorkelling with Caroline. What a year!
Of course, there was some hard things in 2017 as well… in particular, recovering from the car crash late the year before, and caring for my friend Kate as she suffered with metastatic breast cancer. Despite these couple of hard things, I was grateful for the time I got to spend with Kate. In any other year, I would have struggled to arrange time off work to spend the time with her that I did last year. I was very grateful for that precious time.
It really was one the of my best years. I was happy. I was ready to open my heart to Jen and start a relationship. I spent so much time with existing friends, and made a whole bunch of new ones. I found my confidence travelling solo. And I finally took the step to leave a very stressful job. It was quite extraordinary.
But 2018 was very different. This year started with Mooch having lifesaving emergency surgery late on new year’s eve. I spent the evening waiting for the phone call that she would be okay. And she was luckily. But boy… that was a stressful night.
Then only a week later, I got a test result that sent me into many painful and stressful appointments, to be told that I had breast cancer. The year was defined by this. The whole year. But I wasn’t to know just how much at the time.
January and February were probably the most stressful of all. The barrage of confronting appointments, the uncertainty about the extent of the cancer, the anxiety that took over due to my previous experiences with breast cancer, and the preparation for my own life saving major surgery. It was all too much. I tried meditation. I tried crying it out. I tried hypnosis. I tried anything I could think of to stay calm. But it was very difficult. Jen held me through all this. She came to all the appointments. She took notes and helped me to process it all.
In March, I had the dreaded surgery… a double mastectomy and sentinel node removal, and a reconstruction called “Diep flap”, which transplants the abdominal/tummy to the chest area. The transplant went well with a couple of minor issues that I’ve been left with (some nerve damage, and some tissue that didn’t survive the transplant). But all in all, it went really well. The cancerous tissue was all removed, and confirmed that it was out before any of it could spread. This was such a relief and meant no further treatment would be required (like chemo, radio, or hormone treatment).
Over the months that followed the surgery, I gradually recovered, first with the ability to sit/stand, and move my arms, and gradually building up my strength day by day. Jen cared for me day and night during this time, helping me to dress, shower, bath, changing dressings, doing all the household things, driving me around to all my appointments, and basically doing anything that needed to be done. She was amazing. And I have to say, despite it being a hard time, Jen and I had loads of fun as we spent the days and nights together. We were both surprised at how much we laughed during this time, and how it was nice to have that time together. I also had amazing support from my friends and family. I had friends visit from near and far, and support both practical and emotional. On top of the recovery, we moved house 4 weeks post-surgery, and Jen single-handedly packed my whole house (and hers), and unpacked at the other end. She got my unit ready for renting as well. It was a crazy time.
Living together at Sandringham, Jen and I introduced our furbabies Mooch and Sami. It was a very trying time. They didn’t like each other, and definitely made the adjustment to living together difficult until they finally decided to get along.
I started back at work in May, only a few hours at a time at first. My work had been incredible when I was diagnosed. I was only a few months into my contracting arrangement, but they offered to convert me to a permanent employee so that I could have flexibility to return as I recovered and wouldn’t have to look for work. This was such a blessing, and one I hadn’t expected. It meant I could take the time I needed to build up my strength, and gradually return to work with a balance of working from home.
But in May, life took another turn. My dear friend Kate, who’d been suffering from metastatic breast cancer, went downhill. I spent as much time as I could physically manage with her. Her part in my life was so precious. Kate passed away, at home, with her family around her. I said my goodbyes to her a few days earlier with the heaviest heart. The loss of Kate was a huge gap in my heart. My heart broke. And so did I. It was one thing too many. I felt broken and I couldn’t see through it.
I don’t even know what to write about this part of the year. I have never cried so much. I needed help desperately, so I sought it out. Over the next month or two, it took all my energy just to pick myself back up and be able to function. I was still physically recovering from the surgery. I poured my limited energy into my physical and mental recovery, and returning to work. I was still only part time, but by July I managed to build up to 4 days (2 in the office and 2 at home).
August started off with a bang! My beautiful, caring, amazing partner Jen, asked me to marry her in the most incredible proposal ever. She made me feel so special, like I’d never felt before. I said “YES” of course, and we started the exciting task of planning our wedding. This was such a happy time. Our friends and family saw how much happiness we brought each other, and they celebrated with us.
Going into my 2nd surgery a few days after our engagement was made easier by the excitement of getting married, and also our decision to start looking for a house to buy together. While I recovered from this surgery, we started house hunting for our forever home.
Only a few weeks later though, our beloved furbaby Sami, who’d been by Jen’s side for 13 years, was tragically hit by a car outside our house. It was a devastating blow to our little family, and to Jen, and it was a traumatic time. We grieved, and I held Jen while she went through the loss of her little girl. Sami had such a special place in our hearts, and in our little family. Her loss was a huge one, and a big change to our everyday life. The contrast of being happy and excited about our engagement, and the sadness of losing Sami, really made this time like a rollercoaster.
In September, Jen and I found our forever home and within days had bought it! We had our engagement party, and felt so honoured that so many of our close family and friends would be there to celebrate with us. It was incredible to have all these amazing people in the one place, there to support us, and to feel so honoured that these people were in our lives. It was quite emotional.
October was defined by a holiday to the South Island in NZ, and settling on our new home. The holiday was just what we needed. Some fun experiences and the time and space to spend some much needed time just being together without the responsibilities of anything else. We made memories here that will never be forgotten. And on return, we settled on our house, started renovations, and moved in a couple of weeks later.
What a year it’s been. And as the year has come to an end, I’ve found myself pondering the rollercoaster that was 2018. The last part of the year has been a hard one, as I’ve tried to cope with chronic pain, and medications that have impacted my mental state. Only now, right at the end of the year, am I feeling like I am finding myself again.
Last night I stared in the mirror for a while. I thought about Jen in her wedding dress (she tried it on yesterday) and how perfect she looked. And I thought about how lucky I am that I was given the option of a reconstruction that looks natural. I will be able to wear a dress on my wedding day that won’t have to work around 1 breast, or no breasts. I have that. And I’m grateful for it. I thought about Simon’s skill (one of my surgeons), and the massive surgery I went through. And for the first time I thought to myself that it was worth it. That’s a big milestone for me. I’ve been so focused on all the trauma and the left over issues I live with, that I haven’t let myself feel like any of it was good.
But I’m lucky. My mum wasn’t given that option, nor was Kate. I am lucky to live in the time I live, to have the money to afford the private operation (meaning I could do the double instead of single reconstruction), and that my body ticked the boxes for the diep flap transplant. And whilst it was (and still is) a massive change to my body with ongoing things to manage, it does look like a natural woman’s body.
I remember my mum really struggling after she had her single mastectomy with no reconstruction.. her struggle with clothes and bathers, and the mastectomy inserts continually moving out of place. I remember her crying or freaking out and wanting to hide from view. She wasn’t given the option of the double. And in the end, that was what ended her life. The later cancer in the 2nd breast was the one that killed her. I wonder if she’d been able to access the same options as me, whether she would have survived. I guess I’ll never know. And I’ll never really know if I’ll survive too. I mean, I’ve survived this one. But I’ll never know if that will be the end of it, or whether there is more to come. That’s just one of the shitty things about having breast cancer. There’s always that little fear in the back of your mind that it might come back.
I was reading an article this morning about fear of travelling and how this girl overcame her fears because her desire to travel was stronger than her fear. And it occurred to me that I might be able to treat my fear the same way. My fear of the cancer returning is no small thing. But my desire to live a long happy live, and set my mind free to enjoy life, might just be stronger than the fear. Of course, I’ll need help to work that out and manage the fear, and I’m doing that. I guess it will take some time. Some days I can set the fears aside and have hope for life. But other days, it gets too much. I’m hoping that this next year, the good days will far outweigh the bad days.
My psychologist, who’s been working in oncology for years, encouraged me to give my cancer story a name. I’m not sure whether I got it from Kate, or Jen, or where this started, but I’ve been calling it the “C-Bomb” for a while now. There’s really nothing nice about cancer, it’s totally shit. But giving it a name, and allowing myself to acknowledge that helps me to change my thought process. When thoughts about cancer or fears enter my mind, I can tell myself, “That’s the C-Bomb again and now is not the time to think about it”. Of course, that is going to take practice… it doesn’t always work. But hopefully in time, the C-Bomb will be a fleeting thought that just pops in every now and then, and then is gone as quickly as it arrived… like other things I’ve learnt to live with too.
I know I’ll get there eventually, but there’s still a lot of things that allow the C-Bomb to stay in my head. Particularly, the nerve pain and physical limitations that restrict what I can do. At the moment, each time I feel pain, or sit, or stand, or move awkwardly, or see activities I can’t yet do, I can’t help but let the C-Bomb have power over me. I long for my ‘old body’ where I could go kayaking, or go for a jog, or do a pilates class. But I’m not there yet. That’s not to say that I wont be…. It will just take more time than I want.
I’m an impatient person, particular with myself, and I want the recovery to hurry up. Learning patience with myself is probably the hardest part of this year. And I have by no means mastered it. It’s probably the last remaining piece. People say to me “focus on the small wins”. I know that’s true. I need to find small achievements to celebrate, like walking up stairs without the handrail, or walking Mooch by myself, or carrying grocery bags. And when I think back to how far I’ve come, there really is a lot of progress and achievements. But with my eye on the end game (or my previous abilities), the small things go unnoticed to me sometimes. I’ve always had big goals and expected a lot from myself. And generally I make that happen. I’m not so good at acknowledging the small things.
I’ve heard a million times that after breast cancer, you have to find “the new normal”. That has always really annoyed me. It feels like I’m letting it win if I let it define who I am and what I can do. F**k cancer! I want to be whoever I want to be despite the cancer. I don’t want to find a “new normal”. I want to be extraordinary and live life however I WANT to live it. So my end game is different to what it might be if I accepted the limitations I have.
Maybe that’s the problem. Maybe I haven’t accepted the fact that this has happened and that life will be different. But it’s what motivates me. If I give in and accept the “new normal” then I have no motivation to get past it. There’s so much uncertainty with cancer, the difficulty with “finding” the new normal is that you don’t know what it is. How can I be motivated if there is no tangible goal to aim for. Small wins are hard to recognise if they aren’t defined as part of a larger picture. It’s tricky.
So, I guess I’m not accepting a new normal at this stage. Maybe I will in time, but not yet. At the moment, I still hope to be FULLY recovered and able to kayak all day, hike up mountains, dance freely with Jen, swing kids around in circles in the sea, build things, travel with a backpack on my shoulders, and be around to have children and watch them grow up free and happy. That’s the goal.
It feels like a mountain, but then I’ve always aimed high. I’m not into comfort zones usually, so why should I for this. Every day I put myself out of my comfort zone. Whether it’s wearing a tight top, or lifting some bags at the shops, or writing this. This year, I’ve had more days where I haven’t felt able to do that, than days when I did. But it’s the last day of the year today. Time to purge these things and start a new year fresh.
Coming up to the end of this year, I really struggled to get my head around the fact that I couldn’t just leave the cancer in 2018 and start 2019 without having to think about it. It’s not over, and it won’t be for some time. But the worst is over. And that’s something.
With 2019 starting, I felt I needed to purge a lot of the shit from this year out, so that I could start 2019 with a feeling of hope that 2019 will be better. And it will. Last year, the first month was the most traumatic. This year, the first month will be the most exciting.
I’m getting married in less than 4 weeks to the most amazing woman in the world. I have so many incredible things to experience this coming year. I can’t wait to marry Jen, and spend time building our home and our little family. To be given the opportunity to have a family with Jen gives me the most incredible feeling. I love our little home, our furbabies, and our life together. And I am hopeful that we can grow our little family.
I’d also like to be able to achieve some physical things too. I might not complete the Annapurna track, or do a 10 day hike through Petra, but I definitely want to do day hikes in beautiful places, and travel again somewhere adventurous. And that can be my motivation for the boring physical rehab that I have to complete. 2019 WILL be better that’s for sure.
Never before have I felt such a strong urge to participate in the “New Year Resolutions”. I always found it a bit naff because I often see them being these aspirational things that seem to be forgotten a few weeks later. But… I need these. And I am motivated to make sure they aren’t forgotten. So, with all that said, here are my goals for 2019:
– To tip the balance – to have more good days than bad
– To get married to the most amazing partner in the world, and have an awesome time at the wedding
– To dance with Jen with confidence on our wedding day
– To go on a honeymoon with Jen and create lifetime memories
– To start a family!
– To complete “Pinc Pilates” rehab, and the 3 month “Exmed” rehab program (ie “Graduate” from rehab and start normal classes/exercise)
– To work my way up to a 15km day hike by the end of the year
– To paddle in my kayak at least a couple of times by the end of the year
– To do a backpacking trip somewhere adventurous (either solo or with a travel buddy)
– To resume my volunteering position with CKC
– To fulfil my promise to Kate to complete her memoirs project
– To spend LOADS of time with friends and family
I plan to actively take control of these goals and make sure they happen. And I’m excited about working on these. Of course, I have other hopes for 2019 too. And I separate them deliberately as they aren’t things that I have the control over, but they are things I want. So, here are my additional hopes for 2019:
– To get the “all clear” result from my next cancer screening
– To be cancer-free ALL year.
– To be pain free by the end of the year, or at least reduced pain to a manageable level
So, 2019 will be a different year for sure… a better year.