When Jak, my energetic 15-year-old son, first went to hospital struggling with chest pains, I was worried - but I never thought I was going to lose him. It was only when doctors started talking about taking bone marrow that I began to understand that our family would not be leaving the hospital unscathed.
It was cancer. At first they thought it was treatable, then they told me it was a rare, aggressive form that had little chance of a positive outcome. I was utterly devastated.
Through it all, Jak was a true inspiration. He just kept looking ahead and carried himself with such dignity and compassion. I was blown away by him in those moments, and I still am.
Everything was so hard to take in. All my energy was taken up trying to process my emotions and cope day-to-day. The last thing I would've expected to worry me was the financial impact of Jak's diagnosis. All I cared about was being there for my boy.
I had been working as a teacher and had recently moved to part-time while I set up my own business. Following the diagnosis, everything stopped and I focused on being there to care for Jak. I was getting some paid time off, but that didn't last long and was based on my reduced contract. So my outgoings very quickly overtook the money coming in.
The financial repercussions of a young cancer diagnosis are huge, but it's a tidal wave you don't see coming. You just aren't looking in that direction and you don't realise until it hits you.
We were eventually given the news that, despite the aggressive chemotherapy, Jak's cancer was not going to be cured. I was sitting with the consultant and I asked 'are we talking about months?' and she just looked at me in a certain way. I said 'weeks?' and she gave me that same look. At that moment I realised quite how quickly this was going to happen. I just wanted to get Jak home. He stayed with us for 10 more days before he passed away.
It's hard to describe the grief of losing a child. It's not something you can ever be prepared for. One thing I really wasn't ready for was returning to work. I couldn't imagine being there, working with children, while I was still trying to process my loss.
After Jak's death, I realised I would struggle to pay for his funeral. The costs are huge and I had no savings. Luckily, his football team raised money for us and I didn't have to face that. I just don't know what I would've done. Throughout all of this there was a part of me that just wanted to curl up and grieve, but I had to carry on.
I thought of my daughter and my role, as a single mother, of providing for her. If I didn't return to work, we would be in danger of missing mortgage payments and losing our home. I had to go back sooner than I was emotionally ready and it definitely took a heavy toll.
Throughout this experience, I was helped by CLIC Sargent, a charity that provides support for young cancer patients and their families. Their social worker helped me with the incredibly complicated benefits process and gave me a much-needed grant. Their research shows that during active treatment, parents spend an additional £600 per month on average as a result of their child's illness. Now they are petitioning the government to provide much-needed financial support right from the point of diagnosis.
I know there are other families like mine who are caught up in the whirlwind of childhood cancer. It turns a family's entire world upside down. From the moment he was diagnosed, Jak wanted to help people. Whether it was through his own blog, or just the people he spoke to about his experiences. We formed our own charity to continue his wishes, called Team Jak Hopefully he can inspire more people to take a longer look at the real costs of childhood cancer and see how we can get more support for those families forced into a reality so many people can't even imagine.
September is Child Cancer Awareness Month.
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Guest post: "The financial repercussions of a young cancer diagnosis are huge"
24 replies
KiranMumsnet · 26/09/2016 16:42
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MrsDeVere ·
30/09/2016 14:30
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