“We didn’t have enough time.” Cath’s sister died last July.
Today, tens of thousands of people are waiting for cancer tests and treatments, and this year we are set to hit 6 straight years of one key Government cancer waiting time target being missed.
For them every second counts.
We spoke to 4 people who have directly experienced the impact of an early or late cancer diagnosis about why cancer won’t wait, and why the Government must act now to ensure the NHS can catch more cancers early. Here’s what they had to say.
Catherine: “I prayed she would see her daughter start school”
Thursday is the least favourite day in our house. My sister Gabrielle was diagnosed on a Thursday, we were told that her cancer had a specific genetic mutation on a Thursday, she died on a Thursday and her funeral was on a Thursday.
Gabrielle was a happy (but tired) mum, a librarian, an avid reader of books and a great musician.
I have so many memories of our her – from our childhood to our last holiday together before she was diagnosed. We spent what seemed like hours in the pool one evening trying to pick up sequins from an anklet I’d broken, it reminded me so much of the holidays we’d had years ago.
Rescuing the remains of my anklet, we had no idea that she had cancer. It was a few months before she was diagnosed and had a biopsy. The results of her biopsy took nearly 2 months – I can’t tell you how helpless that wait makes you feel.
The delay also meant she started a treatment that had little chance of working. The mutation Gabrielle had only responded to chemo in 10% of cases, but we didn’t know that before she started. Heartbreakingly, she wasn’t in that 10%.
Gabrielle died last July. When she was first diagnosed, I prayed that she would at least see her daughter start school, but it wasn’t to be. She died 2 months before my niece started nursery.
She’s missed a Christmas with us, first days and her daughter turning four. If I ever get married, she won’t be there. At times the thought of a future without her feels incredibly long and difficult. We didn’t have enough time.
Sue: “Waiting for the tests brought more and more anxiety”
It’s hard to remember a time before Philip was diagnosed. My memories are vague, but I know that we were busy. We both worked long days doing jobs we enjoyed and spent our weekends playing golf and seeing friends.
And then one day, 15 years ago, my husband was diagnosed with prostate cancer. Philip had surgery and the hope was that it would cure his cancer. Every 3 months he went for a test, and we were so happy every time it came back with no signs of cancer. We began to feel more confident that his cancer really had gone.
But a year later, the result we’d been dreading came – his cancer hadn’t gone. There were other treatment options, but there wasn’t a cure.
Our lives became very uncertain all of a sudden and waiting for the tests brought more and more anxiety.
Waiting for the results was tense too, you’d try to forget but the thoughts kept creeping him. Waiting in the outpatient clinic, we’d try to guess the result based on how the consultant looked or smiled or greeted us. Every minute before we got the result seemed to stretch much longer.
A year later, the chemotherapy Philip was taking stopped working. He had run out of licensed drugs. By the end of the year he was really quite poorly, he wasn’t well enough to leave the house or visit friends.
At the beginning of 2009, he was fortunate enough to take part in a clinical trial, which helped improve Philip’s quality of life so we could make the most of the time we had together. We had a 10 day holiday in South Africa and it was the best 10 days. We played golf, visited wineries and created memories.
We hoped that the treatment might continue working, and we’d have more years to spend together, but it wasn’t to be. Philip died on Christmas Day.
My hope is that in the future, the word ‘cancer’ won’t induce the same fear or dread we had. That more people will be diagnosed early and survive. That the time they have with loved ones won’t be cut short.
Because one thing I know is, time is precious.
Patrick: “Time was all we thought about”
2019 – time to leave the nest. I was off to university. I remember the excitement as my parents left me after helping me unpack. My life as an adult was beginning and I couldn’t wait.
Eight months later, everything changed.
I was diagnosed with cancer in March, the day before my 19th birthday and a week before the first UK national lockdown. A day later, I was told the cancer was advanced – stage 4.
As the country went from relative calm to complete panic, my entire life was falling apart. The concept of time seemed to disappear and I felt completely powerless, waiting for what felt like an eternity for scan appointments and results.
After that, time was all we thought about. How long until I started treatment? How long until I knew if it was working? How long before I could get back to uni? How long did I have to try something new if the treatment didn’t work?
Thankfully, we didn’t have to answer some of those questions. In June, I was told the treatment was working and I was going to be ok. For the first time in months I felt like I had some control over my life again.
My GP’s quick thinking had a lot to do with that. I was referred on the day of my very first GP appointment. Had that not happened, I probably wouldn’t have gone back for a few months. Months I didn’t have.
Fast forward to October – time to return to uni. I made the journey to London as an entirely different person to the one who set off on that trip just a year earlier.
I remember the moment my parents were ready to leave after helping me unpacking – it’s one I’ll never forget. It felt less like a year lost and more like a lifetime gained. I was back in control of the time in my life.
Hannah: “It’s a hard reality to swallow”
My mum often tells me it felt like everything stopped when she heard my diagnosis, but I was far too young to know what was happening to me.
I was born in the mid-1990s. My brother wanted a little brother, but he got me instead. I had a rocky start; I was born prematurely and spent my first few weeks in this world hooked up to machines in a hospital. But eventually things started to improve, I got out of hospital and life was looking good for our family.
No-one knew I was still silently fighting for my life.
It wasn’t until my cancer was advanced that I was diagnosed with a rare form of childhood eye cancer in both eyes, called bilateral retinoblastoma.
They removed my left eye as soon as I was diagnosed, and efforts turned to trying to save some vision in my right eye. That involved several courses of chemotherapy, radiotherapy and cryotherapy.
I was too young to remember what was happening, but my mum has told me about the anguish she went through watching the impact the treatment was having on my body and that sometimes I became so unwell that they feared I wouldn’t survive. She told me she would take me out to see the fountain outside the hospital and how much I loved it. It’s probably the only place in London I can find peace and comfort to this day.
After all, St Bartholomew’s Hospital was my home and will always be a big part of my life.
If my cancer was diagnosed sooner my life would have been very different, and that is a difficult reality to swallow even to this day.
I would have had better eyesight, and so much more time and energy to focus on other aspects of life without having to worry about the late effects of extensive cancer treatment, other health complications that have arisen, and the increased risk of having second cancers.
My mum hides away the gold heart shaped pendant they put around my neck as a baby as the bite marks are a heart-breaking reminder to her of the pain I was experiencing.
Having said that, I’m eternally grateful to be here and for all the years I have lived so far. I got through school and graduated from Queen Mary University of London with a First Class Honours Degree in Politics. I had the best years of my life at university, went travelling to some amazing places and developed a real love for food.
I’ve also lost people near and dear to my heart to cancer too. A close friend at university and a close family friend, someone who was like a second father to me. To top it all off, not too long after he passed away, my dad was diagnosed with bowel cancer. Thankfully it was caught early enough to be operated on and he’s now in the all clear.
Now I’m looking to the future, and I have big ambitions. After a couple of years working in Parliament as a Researcher and then working in a medical research charity, I’ve now started a new adventure working for the NHS. I hope that – given the opportunity – I’ll one day be able to sit in the House of Commons as an MP and make a difference there too.
It’s heart-wrenching to know that I can’t share any of these milestones with the people I’ve lost. I’ll never stop grieving, but I know they would want me to make the most of my life and achieve great things.
And with everything that I do, I hope I’m making them proud.
Cancer won’t wait
Decisions made right now in the Government’s Spending Review will determine what the future holds for people affected by cancer.
The Government must provide the NHS the funding it needs to bring down cancer waiting times, and diagnose and treat more people’s cancer early.
Join us in calling for more investment in the NHS workforce.