We had all plunged into a big black hole of despair in the days which followed my sister Helen’s metastatic breast cancer (MBC) diagnosis. Two and a half years on and now on her second line of treatment, there have been many more frightening and uncertain times for Helen and us all. Throughout it all, METUPUK has been a constant source of support, comfort and hope. That’s why we got involved, because when nobody else was there, METUPUK was – advising, caring, advocating. Fuelling hope, connecting people who understand, fighting for change. Here I share things from “a sister’s perspective” of how life is and how life has changed so dramatically.
I got a phone call from my little sister one December evening in 2021 that changed my life. I had just hosted a Christmas party for my eight-year-old son and a few of his friends and was feeling festive, tidying up the post–party mess. My world literally stopped as Helen cried over the phone, “It’s back”.
My head spun and I felt physically sick. She lives 300 miles away from me and I wanted to just magic myself to be by her side. I’ve never felt so alone, so scared or so utterly helpless. I could tell only our brother from our immediate family as our parents were on holiday, returning the following day. It was heart-breaking to tell him. We both wanted to race to be with our sister, but we had to wait until our parents came home to tell them, we couldn’t deliver such news by phone. We told our mum’s sister and took her with us the next day as went to tell our parents. Helen was there via video call and just cried and cried. Bags were hurriedly packed, and we left Christmas and our “old” lives behind as we travelled to be with her. I tried to be brave, I had hardly cried as I was in a state of shock and I had immediately, subconsciously, taken on the role of ” The Strong One” for the rest of the family.
I sent texts to my mum and dad throughout the journey as our cars convoyed the few hundred miles, checking in and reassuring them, even though I had no idea what was happening either. We arrived late at night and the sight of my terrified sister, sobbing as she collapsed into my mother’s arms will haunt me forever. We tried to reassure her, you will be OK, you will get treatment again and be OK, even though none of us knew what she was facing, and it felt like there was nobody there to help – no doctors, no treatments, no appointments until after the festivities. Christmas passed in a haze of hidden tears and brave faces for the sake of our children. Those first few months were excruciatingly painful, and we all experienced so many emotions during that period and we all continue to do so.
My sister has had three cancer diagnoses; primary thyroid, primary breast and secondary breast. I’ve never had any major health issues, yet I don’t exercise nearly as much or eat half as well as my sister. She takes care of herself, so why her? With very few cancer diagnoses in the family, why her? She’s the younger sister, why her? She’s an incredibly gentle and patient parent, the most selfless person I know, so, why her? As the big sister, I look after my younger siblings, but there is nothing I can do to change this for my sister. Of course, her diagnosis is never far from my mind, but sometimes when out enjoying life, it creeps into the forefront of my mind, and I feel guilty that I can be so carefree. My sister still enjoys life, and we plan lots together, but she has restrictions – appointments, side effects, “bad days”, symptoms.
The fact we live so far apart is hard, I can’t pop in for a cuppa and stick a wash on or feed the girls to help when she’s not doing too well. I feel guilty she was misdiagnosed for so long. When she began having shoulder pain not long after her primary treatment stopped, she was diagnosed and treated with muscular injuries. Why did I not know about recurrence cancer risks? Why did I not make the connection? If she had been diagnosed sooner, the cancer might not have spread so extensively throughout her bones. There are so many reasons I feel guilty.
I am angry as it’s just not fair. If I dwell on this too much, I feel so enraged about the horrible hand my sister has been dealt. She’s such an amazing person – a nurse who has saved countless lives, an adored mum, daughter, sibling, friend. A “good person”. I’m angry that there’s not the knowledge in the medical community that there should be, that patients must advocate for treatment, campaign for themselves, that where a patient lives can dictate what life extending drugs, they may have access to. With the diagnosis they have, with all that that brings, they are having to be their own advocates. Having to research, campaign, challenge, check, doublecheck that the “right” things are being offered to them. This consumes so much precious time. Time that they don’t have and should not have to dedicate to “working” to extend their own lives. I am angry that people with the power to make change, those who could literally make a difference, simply are not doing so.
Sometimes, during the night or when I wake up first thing in the morning, a painful, terrifying, crippling fear takes hold of me. Losing my sister. My best friend. My rock. Her girls left without their mummy whom they just adore. Our Helen, not here. I cannot even comprehend it. It’s like in those moments I’ve began to grieve. So, I box those thoughts up and put them away and try so very hard not to think about them. Take it day by day, take each day as it comes, don’t think about it. As the pain is just too much and brings a sadness that consumes me.
The unknown is terrifying, but I try to tell myself, maybe there is “good” unknown as well as “bad”; maybe there’s a new treatment coming, maybe a cure. Some people believe hope to be pointless as it doesn’t change things. But it changes how you feel and, in amongst all the frightening reality, having hope helps. Knowing that so many people are “rooting” for my sister helps.
We have an incredible network of support in our small hometown and that’s truly comforting. Amongst all the “bad”, I try harder to see the “good” in life. I appreciate my family more. I take in all the small, joyful moments. I try to be present, to listen, to capture as many memories as I can. Take every little opportunity for adventure and fun. Life is truly precious and can change in a heartbeat, so enjoy it. Such a cliché, but so very true.
