"Maggie’s turned out to be the best place to be on the worst of days. It is a place of peace in the eye of the storm. "

SARAH’S STORY

2018: The news that the sarcoma had recurred was while I was in a befuddled state after emergency surgery. Hooked up to various tubes and drips, I watched the gynaecologist form the words with her mouth and I studied the kind face of the Macmillan nurse as she tried to unpack the diagnosis with me, but I couldn’t take it in.

It was at home two weeks later that I understood that a colostomy was not the worst thing that could have happened to me.  Metastases …  Extensive activity throughout ...  read my discharge notes.  There was worse to come.  So it was back to Christie’s, from where I’d been discharged four years earlier.

My ‘cancer journey’ began back in 2006 when grim gynae symptoms triggered treatment for ‘fibroids’. Histology following hysterectomy revealed a rare soft tissue sarcoma. Early. Low grade. You’re very fortunate. We never find it this early. Seven years of scans followed before they let me go. I’d been tremendously lucky.

Fast forward to 2018 when, feeling considerably less lucky, I wept during my first blood test back at Christie’s. Brushing aside my apologies, the nurse said to me – Go to Maggie’s. When you’ve finished here today, just go to Maggie’s.

But I didn’t – I just wanted to go home and hide, wrap myself in fear and not talk to anyone.

When I tried to sneak into Maggie’s two weeks later, I was totally disarmed. It felt safe. The air was filled with a kind of confident compassion. I didn’t feel ashamed when the tears welled up. Maggie’s turned out to be the best place to be on the worst of days. It is a place of peace in the eye of the storm.

 I received counselling at the hospital prior to major surgery in 2019. There were some very difficult decisions to be made. It was helpful to talk them through.  Meanwhile, my husband, who never missed driving me to my various appointments, was supported by the incredible people at Maggie’s, where he felt totally at home. (On one occasion, when I was held up at hospital, someone had to wake him up because it was closing time – they were most apologetic!).

We are both forever grateful for the support we received at Maggie’s during that horrible year - and even now when I visit for my routine follow up appointments, I rarely miss visiting Maggie’s gorgeous garden, which always feels like a healing place.

I will never be cancer-free. I am in remission but like many of my fellow travellers, my health is still ropey. My body has been disfigured by four separate surgeries. I still have the odd emergency admission.

Miraculously, when they cleared me out in 2019, my bladder was saved so I remain a ‘single bagger.’ However, I have been very conscious of my colostomy baggage.

Explaining that it was almost inevitable that I would need a second bag following my last surgery, one medic ‘helpfully’ told me that ‘although he could see line of my colostomy bag under my dress, he was sure that no one else would notice it.’  Already wearing long vests and leggings under loose shifts to hide my shame, I was devastated.

Two years on from this conversation, I plucked up the courage to apply for MOTR because I wanted to feel proud of my body again. I also to show that it is possible to be body positive again after a colostomy.

In doing so, I have joined a community of incredible people and it’s going to be an absolute blast!

I’m not the person I was. I’ve had to accept that my life will be shorter than I expected.  My body is permanently changed. I struggle a lot with the side effects of my medication. I’m easily fatigued. But these are the mundane facts of life for many people living with cancer, and although I must accommodate them, they do not have to direct the rest of my life. And I am determined to live that life fully all the while I am lucky enough to be in remission.

Mary Oliver’s glorious poem ‘The Summer Day’ finishes with these words:

Doesn't everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?

I’m going to shimmy down the runway with Rick Astley and flaunt my fabulous body in front of hundreds of people.  How’s that for a start?