Where The Roses Bloom

The funny thing about cancer is that it puts blinders on, so everything that isn’t focused on pure survival gets pushed to the side. Obviously it’s a huge relief to be feeling better to do more, and reengage with life. But emerging back into normal life, where all those other concerns come rushing to the forefront feels more than a little overwhelming.

I know I’m not alone in this feeling. I felt overwhelmed on a regular basis before I had cancer, and pretty much everyone I speak to seems to find it challenging to juggle everything that goes into living at time or another.

At the moment, it feels like almost everything in my life is up in the air, and I’m grappling with some really big decisions. The pain point is at the intersection of all these decisions: about childcare, work, identity, finances, creativity.

I have played out a million scenarios in my head. I’ve been up late nights trying to work out it, googling different childcare options, searching for jobs, planning my days. I’ve even had nightmares where I just keep working, trying to find a solution that feels okay to fit the pieces together.

The big dilemma I’ve been facing is this: we don’t really have a budget for childcare unless I figure out a way to earn more money. I feel incredibly lucky that Zach’s salary can cover almost all of our basic needs, and our family has generously helped out in emergency circumstances (otherwise, I can only imagine the load of debt we would be carrying post-cancer). But we need to be quite careful about our ‘extras’: dinners out, special treats, etc. And without some massive changes, the budget doesn’t really stretch to cover childcare.

So there’s a decision: do I stay home with Rosie? Or do I try to get a paid job that can cover our childcare costs? Or is it some combination of the two? And in either case, how do I find the time to look after my health and to write (without which I start to genuinely lose my mind)?

I feel guilt in all of these scenarios: for wanting time to do the creative work that feels like my calling, for wanting time away from Rosie to be creative, for wanting time with Rosie when nursery might expose her to new experiences, for doing work that earns so little money, and so on.

I’ve been thinking about it so much that I’m actually bored by my own problems. But I still haven’t been able to find a way out, since it feels like there are so many variables and everything is up for grabs.

To top it off, it all feels time sensitive. Our contract with our beloved nanny is ending soon. One of the jobs I’m thinking of applying for has a closing date coming up. And our financial health needs some serious attention…

I actually think I’ve been making myself feel physically ill with the stress of this – which is embarrassing coming out of something as serious as cancer. But even though the issues that are troubling me seem like surface concerns, at the base of it is actually an existential crisis about what kind of person I want to be and what kind of life I want to have.

This morning I had a good long cry – which actually felt rather cathartic. And in the calm, quiet aftermath, a question rose to the surface in my mind:

“Does this feel like a step forward? Or a step backward?”

I’m still not entirely sure what all the answers are, but it was bringing me a new clarity.

Much as I love having Rosie around, keeping her with me full time would feel like a step backward. It felt essential in the baby days when I was breastfeeding her. But now, she is a curious, independent-minded toddler who loves being out in the world and with people. The nostalgic part of me wants to rewind to that close place of togetherness, but the choice that feels like a step forward is putting her in some kind of childcare that lets her explore this wider world, and gives me the freedom to find my own independence.

The answer is a bit murkier in terms of my career. With regard to applying for a job, finding a position in academic administration for an arts school could be go either way. It could feel like a step backward, returning to a familiar safety net or a past that no longer suits me or my life. Or it could feel like a step forward, in being able to support my family and laying the foundation for a future in education and developing young artists.

This isn’t the kind of question that can be answered rationally. It’s an intuitive choice. But just sitting with that question – step forward? step backward? – feels much less torturous than teasing out a million scenarios.

Another way of thinking about this is: “will this help me grow?”

People like to say there are no right or wrong decisions. In many ways this is true, and regardless, most of our choices fall into a middle ground where the stakes aren’t so high.

Still, I do believe there can be such a thing a right or wrong decision for an individual person, determined by whether they are following their gut instinct and their own inner truth. The ‘shoulds’ and the ‘musts’ can be so loud, that it’s hard to hear that inner voice – I know it often is for me. With big or complex decisions, this is something to try.

Photo by Clem Onojeghuo on Unsplash

I keep having bad dreams.

Not even interesting bad dreams. I have been having the most boring bad dreams imaginable.

Last night, I was doing my taxes for hours – adding figures, calculating things out, entering form numbers.

The two nights prior to that, I spent all night researching nurseries for Rose, making calls, and doing visits. I woke up exhausted.

These dreams feel like they are devoid of meaning – just an endless continuation of the tasks that are occupying my days. At least a nightmare feels like it contains symbols that can point to greater meaning and self-insight. This is just a slog of menial tasks.

But I wondered – is there a meaning if I look a bit deeper? There must be…

I think it might be that I am so overwhelmed by the enormity of trying to keep up with life that mundane tasks are consuming my inner life. And it is essentially eating me alive.

It feels like I have lost my ability to dream.

As someone who has always had vivid, rather peculiar dreams, that feels just a step short of devastating.

There have been so many times where I have told my inner life to be quiet, to get out of the way so that practical work can be done.

This is magnified by my need to feel – and look – capable, and functional, and ‘normal’, whatever that means at this point.

This must just be a misguided effort to get more control over my life. Instead, it is just shutting down my imagination.

Giving so much of my attention to these little things must be serving some kind of valuable distraction, protecting me from having to think about the bigger issues that are troubling me as I work to rebuild my life.

At least I should be grateful I’m sleeping, since insomnia has been a regular friend. But I cannot wait to break out of this cycle.

Am I the only one who has had really boring bad dreams? I would be interested to know…

Photo by Rodion Kutsaev on Unsplash

In my meditation group tonight, our teacher talked a bit about the value of setting intentions – for a given night of practice, or even for an entire year.

He likened this to driving without a map from London to Newcastle, far in the North of England. You’ll get there eventually, but it might take a lot longer. And it’s much harder to take a scenic route if you don’t know where those roads are.

The intention that I chose for this evening’s meditation was ‘I accept without judgment everything I am feeling’. It’s been hard for me to rebuild a sense of comfort and security in my body. My mind is similarly unquiet.

This helped me be more present in the meditation – last week was agony, this week was merely challenging.

Taking a similar choice to set intentions before big projects, or meetings, or even just getting out of bed is a powerful tool to point us in the direction we want to go.

Our intentions create the maps for our lives.

Tonight, I’m asking myself: where do you want to go?

Photo by Tabea Damm on Unsplash

Today I attended a workshop through ‘Look Good Feel Better’. It’s a wonderful charity where expert volunteers provide a makeup workshop for women being treated for cancer, and everyone leaves with a goody bag donated by cosmetics companies.

I had a really lovely time and felt quite spoiled with all the goodies. But the best part was getting to meet other woman going through the same experience.

The woman who sat next to me gave me so much hope, just by sharing a bit of her story.

Let me explain.

From the beginning of the workshop, I felt her notice me – a hard feeling to explain, but we all know that feeling when it happens. After chatting a bit, she asked me how old I was – not surprising I suppose, because I was clearly the youngest person there.

I told her a bit about my treatment and asked her about hers. (She has a beautiful name, but out of respect for her privacy, I am keeping this anonymous.)

And that’s when I understood why she had noticed me – I wasn’t that much younger than she was when first diagnosed.

It turns out, she was one of those folks dealt an unlucky hand time and time again.

Her first go-round with cancer was 14 years ago. That was seemingly successfully treated, but five years later it returned, mutating to progressively more difficult to treat strains.

She has been living with secondary cancer since then. She experienced metastases in her brain (one of my greatest fears), but these had been successfully radiated and appeared to be gone. Her current treatment radiation to manage a small metastasis in one of her internal organs.

This woman looked fantastic and was speaking with kindness and energy. I know firsthand how deceiving looks can be with this sort of thing, but she clearly had a full and engaging life in spite of everything she had been through.

I’ve read stories from people living with secondaries on Facebook, but this was the first time gotten to meet someone in these circumstances. She was nothing like the picture my more frightening dreams had painted of secondary cancer.

But this is the part that connected with me the most – her daughter was two years old when she was diagnosed. But this woman is still here today, loving and supporting her little girl as she gets ready for university.

To me, she felt like the living embodiment of hope.

I am going to hold that beautiful little flame of joy and inspiration close in my heart, and warm my hands on it whenever the fears start to creep up.

At the end of the session, I felt so positive and energised – not just by the pampering, but also by her story. I told her with a big smile how much just meeting her meant to me. How it gave me faith that I was going to get to watch my little girl grow up.

I think this touched her almost as much as it touched me.

She gave me a big hug, and said:

‘You’ll be there.’

Last week, I lost the medical bracelet I had been wearing religiously since April, when my Powerport was implanted.

The bracelet was simple – a flexible silicon band, with imprinted letters you had to look closely to make out. It was dark grey – unobtrusive and unflashy.

After the surgery to place the port, I was given the bracelet and told to carry a card in my wallet with directions about what the port was and how it could be used.

Ports are remarkable devices. Inserted through a vein in the neck, implanted in the chest, they provide a little landing pad for a special kind kind of needle. This allows chemotherapy (or immunotherapy) to be delivered directly into aorta and pumped out into the body, rather than stressing smaller blood vessels. Ports can equally be used for blood draws.

These can be a godsend for weary cancer patients. The port ensures the veins in their arms are not destroyed by the repeated sticks and toxic liquids of chemotherapy.

The port took some getting used to, but found myself mindlessly playing with it, the way one might twirl a strand of hair. I would run my fingers lightly over the bumps in its surface.

Or, more often, I would play with the bracelet.

It still feels strange not to feel it on my wrist. But I wonder if maybe it’s time to let it go.

Is this part of adjusting to the new normal?

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My energy is getting better and better. I am stronger. My head is clearer. I’m even beginning to make plans about the future, mapping out wishes or goals that are months or years ahead.

That’s something that would have seemed unthinkable earlier this year.

My hair is coming in thick and dark. I’m nearly ready to lose the wig. If I’m honest, the only reason I’m wearing it now is that I still have a few long strands. I could never bring myself to cut it somehow. It felt too violent. Now it feels time to usher in the new chapter.

Someone commented to me this week that it must be nice to let my oncologist see ‘the real me’ – one whose daily activities are no longer defined by illness. I had to gently correct her: I always felt like the real me. Even when I was really struggling, or could only do a fraction of what I did before.

I am different now, but I’m still figuring out how.

I know some people’s experiences with serious illness feel like an out of body experience, or they want to put it behind them to move on as quickly as possible. I understand that impulse. I have felt it myself. But it’s when I give in to this desire that I start to lose my footing.

Stepping back into life feels a bit like putting on a coat bought winters ago, one that no longer fits quite right, and is just a bit out of style. (In fact, it is literally like that, as I’ve gradually pruned my closet.)

So much has changed that my perception of my life looks like when healthy need some serious updating.

The last time I truly felt well was before I was pregnant, over two years ago – except for a brief window of a few weeks, when I had finally recovered enough from having a baby to properly engage with life, but before I was diagnosed with cancer.

It’s incredible to remember what ‘healthy’ feels like.

The sensation is absolutely delicious. And even with the limitations I still have, I feel so strong and full of possibility.

I had no idea just how weak I was, or how much less energy I had than ‘normal’ people until this came back. It is a true delight.

But it’s also a process of discovery.

What is important to me now? What are my beliefs, my motivations, my limitations?

What does my body feel like? What do I look like? How do I present myself?

What does my life feel like in the roles I inhabit. How do I embrace and extend them. How do I experience my blessings as fully as possible?

Most people choose not to wear their powerport bracelet.

For me, it was never a question.

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I loved wearing that bracelet. It felt like the marker of a secret club. Only people who had been on this cancer journey – or close to someone on it – and had been fitted with a powerport themselves would know what it was. To everyone else, it just looked like one of those rubbery inspirational bracelets that people often wear.

It made me feel safe to know that should I go into hospital suddenly and not be able to advocate for myself, this bracelet would tell the medical staff what I could not.

But it also marked me – to myself more than anyone else.

It told me I was sick. It indicated I was vulnerable. It reminded me that I carried a guest in my body in the form of that little medical device that protrudes under the skin of my chest.

There are a few places I could have lost it. I thought about calling to see if it had been found.

But part of me doesn’t want to. Carrying forward this Autumn transformation, it fell from my wrist like a leaf from a tree.

I will see if it comes back to me of its own accord. Otherwise, perhaps it is time to let it go as I grow towards new horizons.

Maybe I don’t need that bracelet anymore.

I’ve been having dreams about breasts.

A few nights ago, there was a dream where I had a baby. I’m not sure whether it was a boy or a girl, it was a mystery. The baby was still very tiny. The baby started rooting – I lifted them to my breast, and they fed.

I could remember exactly what it felt like.

But I will never again feed a baby from my body.

Last night, I dreamed I put on a dress with a tight bodice. In the dream, I had done my mastectomies, but there was still the normal flesh you might see on the chest of a man, and I managed to squish the flesh of my chest together to create a modest but alluring cleavage. (Much in the way drag queens can create this.)

It felt so real that this morning, I put my hands on the sides of the chest to push them together.

Nothing moved.

There is no flesh there to even imitate breasts. If anything, I’m slightly concave.

I was never interested in reconstruction. I think this option should be available to every woman who wants it. But to me, it would just feel like prostheses I couldn’t take off – with a whole added host of added health risks.

Reconstructed breasts wouldn’t have function, they wouldn’t have sensation – who are they for?

I have no regrets about this decision. I don’t want implants. I don’t want flap surgery, where they have to take tissue from another part of my body. (I don’t need scars, or pain, or loss of sensation anywhere else.)

Still, I’ve found myself wondering recently why there aren’t breast transplants. I googled this, but all the information I found was about reconstruction. They are doing face transplants now – why is this something that hasn’t been explored?

But part of me wishes I could have a transplant, or that I lived in an age where laboratories could magically regrow breasts using my own tissue. I wish I could have them back.

Should I be in the situation where I have another child, I could savour those first few magical moments of feeling them latch and getting to know them as they feed. I could feel the touch of a caress. And re-experience particular wiggle and bounce that cannot quite be mimicked by anything else. (Though this bouncing was something `I always complained about before.)

The risks of transplant surgery, or nursing a child while taking immunosuppressant drugs are serious enough that I can understand why this isn’t something being pursued. And for those of us with the BRCA mutation, I’d imagine that adding breast tissue would be an unconscionable risk. But what about everyone else? If we can transplant faces, why can’t we give women actual breasts.

After my surgeries, it was in a state of shock that I reflected that I couldn’t remember what it felt like to have breasts – this only two weeks after the radical change.

I knew this was probably my mind protecting itself.

I can remember now.

I am grieving now.

And the only way to do that is to make space to honour and acknowledge what has been destroyed.

I joined a meditation group recently. This was partly inspired by reading a book that was gifted to me that talked about the importance of the mind-body connection in healing and preventing cancer relapse.

I also signed up in hopes it would help with the crippling insomnia I was experiencing, fuelled by jet lag from our trip to the States. (Which it has.)

Last week, we worked on mantras. These are phrases you repeat silently with your mind, in time with your breath. There were two that were introduced. The first was ‘So Hum’ (‘I am that’).

This ended up feeling like a rather magical way to find connection with everything in the universe – from the cramp in a foot, to the sound of traffic, to whatever feelings might be welling up inside. It dissolved the resistance and just let the feelings pass through me, and was a rather powerful experience.

The second mantra didn’t immediately connect with me: ‘Om Namah Shivaya’. The meditation teacher hadn’t explained the full translation before we started, simply saying it was to the god Shiva – I looked it up afterwards and discovered this translated as ‘adorations to Lord Shiva’ or ‘universal consciousness is one’ – but the literal translation is ‘I bow to Shiva’.

I have no objection to meditating on the power of a god from a different religion, it just didn’t connect with me as deeply.

But today was different.

I sat down to do my meditation practice with this morning’s dream still fresh in my mind. The tears were still wet on my cheeks

Shiva is the god of destruction: ‘destroyer of worlds’. I was initially surprised to learn that one of the three primary Hindu deities was a destructive force. But it makes sense when considered with his partners from this trinity who look after the creation (Brahma) and upkeep (Vishnu).

Destruction is as essential to the continuation of the universe as creation. (Let us remember that cancer is havoc wreaked by cells that won’t die.)

Destruction can be cleansing, offering the promise of building something new. But at the very least, it is accepted as something welcome.

I sat on the floor, cross-legged, and repeated the words in my mind: ‘Om Namah Shivaya.’

And this time they resonated through my whole body.

There was the release of admitting my own powerlessness and loss in the face of the changes that have happened in my body.

I have no choice but to accept the power and blessings of the god of destruction. As I think of the scars on my chest, there is nothing else to do. I can’t deny it, I can’t escape it. It is part of existence for all of us.

I cried again, but in a cleansing way.

Today these words gave me space to feel my loss, but see it as a part of creation. After all, how does Shiva accomplish his feats? Why, through the dance of destruction. He is often pictured mid-movement, surrounded by a ring of fire, as he clears way for the new world.

Shiva destroys.

Shiva dances.

The world is reborn.

Isn’t that beautiful?

Photo by Ernesto on Flickr Commons

Endings are hard.

Yet Autumn is possibly the most psychologically delicious season. Ask people what their favourite season is – most of my friends say Autumn.

It has a warm, rich feeling – bonfires, cider, crunching leaves, a particular kind of golden sunshine.

But part of the appeal for me, I think, was that it spite of nature bringing its blooming to a close, Fall always felt like a time of beginning. Every year, school would start again – a clean slate of possibility.

I like beginnings: the excitement and zing of opportunity yet-to-be-unlocked.

But how much of that push toward beginning was fighting the natural rhythm of the seasons?

Now that I am no longer in school – maybe this is a time to let myself feel more purely life’s natural pulse.

In my late night googling, I stumbled across this article by Roger Robinson called ‘How To Completely Destroy Your Artistic Life‘, where he breaks down warning signs. Number one:

“If an artist is starting too many projects, but none of them ever seemed finished, before starting yet another one. This is one I see alot in artists sabotaging themselves.”

That has the harsh ring of truth.

While I ascribe to Elizabeth Gilbert’s view that some of us are hummingbirds and some of us are jackhammers, and I believe that eclecticism should be celebrated, it can also become a trap.

There were so many projects I had to abandon midstream when I wasn’t well, or things left unfinished. There are new ideas bubbling, but I haven’t closed the loop of the old ones, either by bringing them to a state where they feel complete, or by releasing them back into the wild.

While I do feel the tendrils of growing possibility – like the ivy that is cunningly snaking its way up our wall, growing in defiance of the coming winter – I think it would do my good to try to embrace the rest of this year as a time of endings.

It’s time to let go: of the clutter, the unfinished projects, the various mental loops I am keeping open in expectation of an arrival that never comes.

This Autumn, I’d like to really feel the seasons. And savour the process of endings.

Photo by Chris Lawton on Unsplash