Real Stories
Meredith’s new cancer journey
Meredith searched for answers to her son’s symptoms for six months until he was diagnosed with a brain tumour. Five months later, Benjamin died. He was six-years-old.
As Meredith navigates bereavement, she tells us how she’s living with grief and why roller skates play a part. Meredith says, “Sharing my story is not going to change anything for Benjamin and I, but it might change something for another parent. That’s a gift that I can give to other people.”
Benjamin had two speeds – stop and full throttle. That was until he was three and started getting the odd abdominal illness. We’d go to the GP, they’d send us to hospital and then they’d send us home. That became the routine and I just knew something wasn’t right.
On Christmas Day 2015 – our last Christmas together – Benjamin was so sick he kept putting himself to bed rather than open his presents.
That’s not normal!
When I noticed something odd with his eyes we went for an MRI. It was 9 February 2016. That night the doctors told us he had a huge mass in his brain.
I felt angry that they hadn’t looked earlier. I felt angry that they thought I was overreacting. For six months they told me there was nothing wrong with my son, yet he had a brain tumour. I was devastated.
Within 24 hours Benjamin had emergency surgery which removed 80% of the tumour. Then he had to learn how to sit, stand, walk, eat and drink again. There was pain and also a new diagnosis. Benjamin had Stage 4 glioblastoma multiforme, an aggressive brain cancer. The following months we had radiation at one hospital, check-ups at another and palliative care at a third.
I became overwhelmed. I had to make decisions that I wasn’t equipped to make. My family was divided. My husband and the older kids were doing the day-to-day stuff and Benjamin and I were doing the hospital stays. Sadly, that wedge has never fully healed.
Benjamin passed away on 9 July 2016, exactly five months after diagnosis.
I have guilt that I didn’t have the information to advocate for my child. I have guilt that in trying to save him, I made him suffer. I have guilt that my older children had to deal with so much.
People assume I should be better now. No, I shouldn’t – I should have my baby! They also say, “I don’t know how you do it” and I feel like I need to comfort them. But, it’s my child that died! I just wish people would ask me, “What can we do?” or invite me for a coffee.
You get to bereavement and it feels like people think the journey’s over. But it’s not. I’m still on a cancer journey – it’s just a different one.
Recently, I went to a retreat where everyone had lost someone to brain cancer. That sounds depressing, but I haven’t laughed so much in my life. I cried too, but they were happy tears, because we all just got it. We connected and we could talk freely about our loved ones without people trying to jolly us up.
It all went so quickly and the impact on my mental health has been severe. I lost confidence in myself and I lost faith in the medical system. I now have PTSD in medical settings. After Benjamin passed, I didn’t even know when to take my older kids to the doctor because I couldn’t make a decision.
Some days are harder than others. Some days I don’t think I can keep going because it’s so painful and so isolating. Other days, the fire in my belly is really strong.
Once I was bereaved, about half of my friendship circle disappeared. When my marriage broke down, more friends went whoosh. It’s a lonely journey and there are days when I don’t think I can cope. There are days where I think: why wasn’t it me and not my son? It’s so painful. It’s a massive load.
Birthdays and anniversaries are hard, and I hate Mother’s Day because all the kids are making things that my son should be making for me. But Christmas is the saddest time of year. Our last Christmas together was awful. Benjamin was so sick, many of his presents went unopened. I can’t enjoy it anymore and it isn’t getting easier.
For a while I was having weekly counselling sessions. Now, I can anticipate when I will need help. I’ve also got a fantastic GP and I always have my ‘calm down kit’ with me. It has colouring books, pencils and earphones, so if I’m stressed I can put music on and start colouring. Generally that will calm me down.
I’ve pulled out the skates and taken up a full-contact sport – roller derby. It’s empowering and the team support me. I think one of them has a diary because it’ll be diagnosis day or Benjamin’s birthday and she’ll send me a message.
In 2018, I decided Benjamin’s death would not be in vain and started Benjamin’s Blessing where each year I find an organisation to bless on his behalf. I do it because Benjamin would always be there to help a friend. He was that kind of kid and I owe it to him to follow what he would want. I owe it to him to live the life that he didn’t have.
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