I haven’t been able to update the blog lately as I simply haven’t felt up to it. I know people were desperate for Poppy updates, and may have been concerned that the radio silence was a sign there was something wrong. But, if I’m being honest I haven’t had the energy or the capabilities of late. Despite Poppy’s continued resilience which amazes me daily, my mood seemed to have taken a turn for the worse.
It may sound perverse to say this, as I write a blog and share our lives but I find opening up to people really hard. I dislike the thought of others knowing my feelings and I despise the social media obsession with over sharing your every thought and movement. It’s my opinion that those who shout the loudest often have nothing worthwhile to say.
But, the reason I’m posting about my low mood is to try to convince others (and my self) that it’s nothing to be ashamed of. Countless times I’ve advised friends to speak to professionals or consider anti depressants in times of crisis. There is the age old adage that if you had a broken leg you’d fix it – so why not get help if your head doesn’t feel quite right? Just because you can’t see a problem doesn’t mean it’s not there. After all, at its most base level depression is simply an imbalance of the chemicals in your brain. Nothing to be ashamed of there. Yet I’ve struggled with this. I’ve really struggled to talk about what I’m scared of and how I feel. After all, it’s Poppy who’s ill and who is our priority. Why should I try and steal her thunder?
But struggled I have. There are dark thoughts that have filled my brain and the strangest of times, and there are so many sentences I’ve wanted to start but couldn’t finish. There is such emphasis on ‘staying positive’ (rightly so to an extent) that I felt there was no room left for me to talk through my fears. No space to not be upbeat for a minute and talk about how sad this was making me feel. People often use phrases like ‘be strong’ and ‘stay positive’ which although well intended made me keep my thoughts to myself. I didn’t want to be the one letting the side down. Our official party line was all about being positive. I felt like a traitor.
At times I almost felt like I had no right to have these feelings. On our last stay in hospital it was insinuated to me by another parent that because Poppy ‘only’ had ALL what they were going through was worse. Maybe it was, but to my mind there are no winners when your child has cancer. It’s not a competition. If it is, it’s a really shitty one that I want no part in.
I was speaking to a friend who had lost her child and we were considering how something as catastrophic as this changes you. How could it not? It changes everything. I find I care less about the small stuff these days. Some things simply no longer matter. But its a hard a very cynical way to be. Does that make it wrong ? I’m not sure, perhaps I don’t really care….
I’m still angry though. Angrier than ever. But frustratingly I have no one to focus my rage onto. I can’t be mad at the doctors, its not their fault. They’ve been great. We got an early diagnosis, we have lots to be thankful for. But some days, my anger scares me. I could kill with the venom I feel towards cancer and what it does to people. I’m desperate for something tangible that I could blame for all of this.
Perhaps I could be angry at god? But I don’t know if I even believe in god, and if I do, I want to keep him onside in case I have a favour to ask…. I don’t know. I don’t know much these days other than I can be consumed by this. It’s a relentless cycle of fear and worry with no respite. There is no escaping the fact that as a family we’re facing something so scary that for a time we were too scared to utter it’s name. Each day we see our Poppy and what this is doing to her. Even though she appears to be doing well, the worry never leaves and I feel resentful for the normality she’s missing out on. I know she’ll probably never remember any of this, but I sometimes wonder if I’ll ever be able to get over it.
If my brain and thoughts were mapped out like a pie chart these days, the biggest portion would be Poppy of course. And by Poppy I include worry, drugs, chemo, regimens and protocol, hospitals, doctors nurses, medicine and side effects. Then there’s the anger, the stress and did I mention, the worry.
Then the rest of the pie goes to Oscar, the worry, what effect this is having on his little world, the guilt that he’s been overlooked in all of this, and the fear of something happening to him also.
There’s not a lot of room for much else. It sounds heartless but I don’t have the capabilities for other peoples problems some days. I just don’t have the capabilities or the energy to process it. Less so the trivialities of everyday life. I often feel like saying to people I hear complaining about minor stuff that doesn’t really matter that if they wanted to see someone with real problems they should spend the day on a children’s cancer ward.
By the evenings I was like a zombie. Drained from the constant buzzing in my brain , I’d go to bed exhausted then find I couldn’t sleep and the fears started to creep in. The witching hour is always the worst I find when your mind becomes your worst enemy. In an especially cruel twist sometimes my dreams would be about losing Poppy and there really would be no escape. I’d wake up and it would all begin again.
I’m not really sure why all this came to a head recently. Perhaps because at the beginning of Poppy’s diagnosis we were so busy with it all. There is a certain fight or flight mechanism that kicks in and we didn’t really have time to stop and think. It was only when her treatment went to a more gentle phase that everything started to slow down and the new reality started to kick in. I often found the early days of Poppy’s treatment surreal. And on more than one occasion I half expected the doctors to turn around and say it had all been a mistake, there was nothing wrong with her after all.
But here we are. Obviously I’m happy that she’s doing well and the outlook is positive. But I can never relax about what is happening and there isn’t a day that goes by where I don’t get scared and wish things were different. I would do anything in my power to make this go away – the fact that I can’t fix her is where I really struggle. I’ve often felt so redundant in my role as Poppy’s mum. Everyone is doing so much for her and I can’t do anything to make her better. Like I say the guilt is always there. I really struggle with not knowing why or how she got this. Perhaps if I did I could focus my anger, and finally could lay fault with someone or something. I’ve worried it was something I did when I was pregnant or something that happened to her in my care. How could I have let this happen to her on my watch? I feel like I’ve let her down.
I know that having these thoughts aren’t helpful and I could have talked them through with friends or family, but how do you begin a conversation that you think no one really wants to hear? What could anyone say to make this better anyway? There’s no room to be morose when everyone is so focused on staying positive. It was my role to be upbeat and hopeful. Talk openly about treatment and how great everyone was at hospital, how well she was doing – not the thoughts that keep me awake at night.
Luckily, I eventually started talking and opening up. I needed to. I was like a pressure cooker of rage and worry about to explode in the most undignified way. No one needed to see that. I cried and swore and shouted, a big snotty mess of pain and relief behind closed doctors doors. I told a counsellor my biggest secrets and fears. My point that they couldn’t tell me what I wanted to hear most in the world – that everything was going to be OK and that Poppy was going to be OK still remained. No one can promise or guarantee me that. But, it did help. They passed me a tissue and I had the space to talk. They listened and afterwards I often feel exhausted and drained beyond words, but it was what worked for me. And there’s no shame in that.