Lou – A Mum’s Story

Lou – A Mum’s Story

After my son Joe had his Bone Marrow treatment in 2018 there was a period of absolute joy, relief and gratitude – we were home at last, he was cancer-free and we could begin to rebuild our lives! During his treatment we were all in ‘fight or flight’ mode (I liken it to ‘limp mode’ in a car struggling along doing what you can do to get to where you need to go!). Now, with this new freedom came a new focus and a very positive one (at the start). Joe was able to return to school, gain new friends, join in with family events, go on holiday and live a happy, healthy lifestyle. Everything you want for your child was right there for Joe and I was overjoyed! Crucially for those first 6 months after treatment his was still an outpatient and reviewed regularly and I still felt the safety that comes with regular contact with the hospital. So I really didn’t see the next part coming…..

As Joe began to thrive, the trips to hospital reduced, and I started to feel conflicted. Of course I wanted him in school, on school trips, joining clubs, playdates with friends but I wanted the safety of the hospital – where he could be checked regularly by experts. A new battle began. A cloud started to form around me, a mist of fear, anxiety, guilt, paranoia. Fear of the cancer returning and my not spotting it. I would check for lumps, bruises, temperatures on a daily basis. I found it difficult to go to sleep without him in my arms – I would wake in the night and check he was still breathing, I would check his poo, his temperature, run my hands over his head, asking him how he was feeling, was he ok? I was convinced the cancer was there, but I couldn’t stop it. I was locked into this exhausting routine that started impacting on my health. I started having nightmares – flashbacks of moments in his treatment that my brain had locked away, that I hadn’t properly processed. But in my flashbacks the images were worse – grotesque. I was too frightened to sleep. I was frightened of myself and my thoughts. They were the darkest images I’d ever seen – and they were coming from my own head. I was scared.

My feelings of guilt and responsibility were overwhelming. I remembered back to all the consent forms I’d signed, all the decisions we had to make, all the times I had to pin him down for treatment crying to me for help, for me to stop them. I started to doubt myself, the system, some of the doctors even. Could we all have done things differently and saved him from the torture of the treatment and the possible long-term effects of radiotherapy? I was beating myself up for putting my son through the gruelling treatment that saved his life. But it DID save his life. It didn’t make sense to me. I couldn’t regulate my feelings. I couldn’t accept what had happened, what needed to be done. I took the blame. I had to; it was the only way I could cope with the guilt. And, of course, I couldn’t tell anyone about these feelings! I should’ve been happy that my son was free, what right did I have to wallow around in these negative thoughts? I needed to get on with my life, our lives. I was holding on to survival mode on the outside and I was crumbling inside.

It didn’t go away. It got worse. More and more things were triggering flashbacks and they were getting harder and harder to get through. My mum and some of my close friends were noticing and it was getting very difficult and exhausting to hide away from. One night after trying to drink myself to sleep and failing, something clicked. I look back now and knew I was at my rock-bottom – I felt worthless, useless, pathetic, guilt-ridden and hopelessly tired. I desperately needed help, I knew it from somewhere, a little grain of love I had for myself moved me to talk. At first to my family and friends and then to my doctor and to Joe’s doctor (the person I trust the most with his life). It was the start, a good start.

Everyone was amazingly supportive. The love and care I received after opening up will stay with me always. What happened next was the life-support I needed to get me where I am today. After some attempts at different counselling and not getting anywhere, Joe’s doctor called and suggested I contact Susie from Mind Over Cancer. We met over zoom, a chat that lasted an hour. She listened, really listened. Her empathy, her smile, her experience, and her energy were what I needed. She organised free counselling sessions for me. I clicked with this counsellor immediately and made amazing progress. I actually really loved those sessions – even though what we talked about was extremely hard, it was equally cathartic. I could see what was happening, I was beginning to process it all. I was gaining the skills I need to cope with the flashbacks (which do still occur now but I’m ready and armed for them!). Brenda actually guided me through a trigger as it was happening, and she was amazing at helping me help myself. I learned a lot about myself. I learned it wasn’t my fault. I had everything I needed to overcome my fears and push that cloud away, she ‘just’ helped me to tap into that. I am grateful for what Susie and Brenda did, but I can now say I was deserving to…. No one should have to suffer after a trauma or crisis. If any of my story resonates with you, maybe not specifically, but you know you need support. Please do make that call. You owe it to yourself. 

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