A life changed in an instant

This is going to be a different post than normal, so I apologise for those who read my blog for the kayaking content.

Last week I lost my fiancé and soul mate, Emily. She was diagnosed in March 2021 with an extremely rare cardiac sarcoma on her heart, which had already spread to one of her lungs.

Sarcomas are the rarest of cancers, and cardiac sarcomas are rarer still. The chances of having one are infinitesimally small, and yet here I am in a state of disbelief at what has happened, because the impossible really did happen.

Despite the long period we had been dealing with Em’s condition, and despite knowing that it was only a matter of time before she succumbed to it, nothing can prepare you for the loss of someone so close and so beautiful a person both inside and out.

Em was determined not to let the bastards get to her without a fight. Some cancer sufferers or relatives of those who have passed away will tell you that they don’t like the term ‘fight’, when it comes to dealing with the disease. The feeling is that it implies that those who succumbed to it didn’t try hard enough. However, Em really did fight it. She swore at the tumours every day, and she was determined to do as much as she possibly could within her physical limitations, surprising the doctors on a regular basis.

They didn’t think she should have been standing, let alone doing regular five mile walks between treatments.

Em was an extremely fit individual before she was diagnosed. We did everything together, including white water kayaking and freestyle. Cancer stripped her of her identity. It took away her ability to fully enjoy the outdoors in the way she wanted, and it took away her career as a diabetes specialist nurse. A job she truly loved, despite the stresses.

Not a day went by since she was diagnosed that we didn’t think about her condition almost constantly. There was no let up. From her complicated regime of medications to keep her heart beating steadily and to minimise the risk of clots, to having to take regular blood pressure and heart rate readings, through to the gruelling chemotherapy she was placed under, there was no escape. It was relentless.

When we could, we tried to have normal days, and sometimes we might find a window of a week or so when we could escape down to the Pembrokeshire coast, a place we both hold dear.

The first chemo regime she went on was very successful. The oncology team didn’t expect any result at all, yet both tumours reduced in size considerably. Follow up scans showed that they were remaining static. But then early this year we discovered that they were growing again, and the problem with cancer is that the fuckers always grow back with a vengeance. In Emily’s case it also spread to her other lung with multiple instances, along with two new blood clots.

Throughout Emily’s journey we had also had many scares, which resulted in her being admitted to CCU for elevated heart rates and also infections due to her reduced immunity. When Em passed away we were due to be married in a few weeks time. I’d always held out hope for a new trial she could go on, and hoped with all my heart that something miraculous would happen, such as a spontaneous remission.

That latter part sounds ridiculous, but with all options taken off the table, the most vain, unrealistic hope was all that I had left.

Now, nothing seems real. It’s like I’m watching myself in the third person, much as Em and I used to watch documentaries about other people going through similar experiences. It is a well worn cliche, but you really do not think that something like this can happen to you. It happens to people in television documentaries, not us.

I’m now in constant emotional pain. I can’t make any sense of her loss and I’ve been having panic attacks as it hits me in waves what’s happened. I’m lucky to have the close support of Em’s family and our close knit kayaking friends. Without them I wouldn’t currently be functioning. Even cooking a basic meal feels like a monumental task for me. Getting up in the morning is like a mission as I look over to the pillow next to me and see an empty space where Emily should be. Even making a single cup of tea in the morning when there should be two prompts emotional pain like nothing else.

Walking our dog, Dolly, a cocker spaniel/patterdale cross that we rescued three years ago is also emotionally hard. Dolly does her best, and she’s not been herself, but she snuggles up to me on the sofa, and nudges me with her nose when I’m inconsolable. Walking her is difficult, because again it was something we did together a lot.

Emily and I were so intertwined in everything we did that I see her in everything. From the Wordle we did every morning to our constant communication no matter where we were, through to our love of food, and the planning of our next adventures. We did more in our eight years together than many do in a lifetime, and sometimes I think we have simply been punished for it. “Sorry, you’re having too much fun. Have this shit disease to compensate.”

How can someone so vibrant, so full of energy and love, be taken away by something so rare and cruel? Because cruel is the word here. Sarcoma is the most evil of things, and whilst I know how complicated it is to find any sort of ‘cure’ for cancer, I still can’t help but get frustrated at what seems to be progress at glacial speeds. If humankind put half of what it pays into for military weapons, we’d probably have a solution by now. If I was to put a timeline on where we are in terms of effectively treating sarcoma, we’re just about at the use of leaches stage.

Chemotherapy is a leap in the dark, and nobody ever knows whether it will work or not. And even if it does have an effect, the cancer cells it misses are now immune to that specific drug or variations thereof. Surgery can only be successful if good margins around the tumour can be excised, and even then there’s no way of knowing if the cancer hasn’t already spread.

The treatments are often painful and debilitating. Emily had extreme sickness, painful joints, she lost all her hair, and she was told that even if treatment was successful she’d be unlikely to be able to have children. Chemotherapy truly is a poison, but it’s still one of the most effective weapons we have. Unlike other diseases, every cancer is unique to your own body, and that’s why it’s so difficult to develop ‘surgical strike’ treatments for it rather than the napalm that is chemotherapy.

Words cannot describe the emptiness I feel right now. To have your worst fears and nightmare actually happen is something I can’t put into perspective or comprehend. I cherish the memories I have with Em, but I am so angry that she has been stolen, not taken, stolen from me, and I will no longer be able to create new ones. Cancer needs to fuck off.