I was just 39 years old, a mother of three young girls, facing a life expectancy of two to three years post-secondary breast cancer diagnosis. My chance to see my girls grow up and live full lives, obliterated by a few terrifying words from a complete stranger.
January was when I would always buy a new diary, filling my time with plans, but not in 2022. I could barely think a day ahead, all I saw each day was death. If I bought a diary, I was terrified I’d “jinx” myself and wouldn’t see out the year ahead; life would see me as cocky and would somehow punish me.
Consumed with anxiety, I felt constantly like I was being strangled. Somehow, I made it through Christmas and my three girls’ birthdays in the January, often escaping to cry, trying to smile through that horrendous first month post diagnosis.
The pain was excruciating. I broke down with my Mum, sobbing “I don’t know how I live knowing I’m going to die!!”. Mum told me nobody knew what would happen, but what was the point in having treatments to give me more time if I wasn’t going to live life to the full? She told me “You have to find a way”. So, gradually I did. I focussed on my girls and took back control, educating myself about MBC (Metastatic Breast Cancer).
I had an abundance of hectic medical appointments to attend, drug regimens to get to grips with; I HAD to buy a diary; disposable paper nonchalantly used to manage time, cheap and easy to get; unlike the time and memories it represented.
I’ve since advocated for myself; challenged when appointments, scans and drug schedules are incorrect. I say advocate, usually, fight. Precious time calling, emailing, challenging to get appropriate and convenient appointments. Hours spent travelling to from appointments, waiting for tests to be done and results to be reported.
If I needed prescription drugs from the hospital pharmacy, then I would need to factor in a further one, two or sometimes three hours waiting time, sometimes even to be told that the items I so desperately needed are not even in stock, to then be sent home and told they’ll be posted to me ….
More stolen time – chasing pharmacy on waiting on deliveries. With METUPUK, I work for change, to demolish inadequacies, postcode lotteries, improve drug access, raise awareness and prioritise MBC.
I use my time wisely because I must – just like appointments and drugs, my life literally depends on it. But time isn’t just time. It is so much more than that now. It is making memories for my beloved girls, my wonderful friends and family, it is working in the job I love, travelling everywhere I possibly can in this world; it should be spent how I want. Instead, catastrophic failings all around us mean we HAVE to spend it trying to prolong our lives. It’s tiring and scary. This, sadly, is my cost of living crisis.
