I’ve not wrote a blog in a while, partly because I’ve been back at work which has been crazy busy, but also because I’ve not been great in my own head.
Covid definitely has played a huge part in our story. We had only just started out when the world went into panic. Only 3 months into it when lockdown happened. Because there was a definite buzz before it took hold of the world, all of our hospital appointments have always been the same. We had restrictions in place a long time before the world did.
Life as a cancer mum during a pandemic has been hard. For reasons that until now, I had never thought about.
I’m on a few parents Facebook pages, for those who’s child has cancer. Super supportive, super helpful and a real sense of belonging in a world where you have never felt more misunderstood.
In these groups, we would see posts about how their child got through their treatment but having days out, having family visit the hospital and making sure they felt as loved as possible. Amazing.
But we couldn’t do that.
I felt a huge sense of guilt and unfairness. Those little things are so important, a huge part of resilience and recovery, but it had all been stripped from us.
1 parent per child to any appointment, and chemo- even his last one.
The responsibility of retaining and relaying that information to the other parent was huge. Decisions that had to be made on the spot, forms signed with only one parents signature and face to face meetings with just one parent, who was already full to the brim with information, trying to speak on everyone’s behalf.
Us cancer mums (and dads) supported our kids- but who supported us? No friend to go out with for a drink during the hardest times. No shopping trip stopping for cake and coffee to let off a bit of steam.
We were alone.
And in some respect, I think we will be forever.
It is no ones fault. I have so many amazing family and friends around me, who will listen to all my stories. But when no one has seen it first hand, it leaves you in your lonely little covid club once again.
End of chemo has been tough for this very reason.
How can I expect other people to even try to understand the enormous pride and relief that he made it to the end, when they don’t have the scarred memories in their heads of children on the ward who didn’t. The posts on the parents groups notifying us all that their child wasn’t as lucky.
You develop this coping strategy, like it’s a game. The worst game you have ever played. Jumamji on steroids.
Every single low make the highs that much higher.
After all, when you have been surrounded by death and dying for the past year, living is pretty spectacular.
You will never truly be able to understand what someone is going through, but being able to go through it alongside them gives you an insight.
To have done all this on our own means that no one can even try to understand. No matter how hard they want to.
Myself and Gavin are the only people who will ever be able to try to understand what the other person went through as we shared the load completely. We both did chemos, we both did part of the op and we both did appointments. But even with that, we did them on our own because of covid.
Support groups stopped, play rooms closed and only 2 parents allowed in the kitchen at one time meant that we were reminded of just how alone we were every where we turned. Nurses and doctors with facemasks on, which made it difficult to read their faces, feeling so impersonal.
Parents had no support.
The children were incredible as ever and all had their parent by their side, running on empty making sure they catered to every single need of their child. Like superhero’s without the abs.
We had no one.
The days were long and the nights were longer. It was like prison. Not even able to pop to get a coffee because the restaurant had closed. Not allowed to leave our room at rainbow ward, so stuck in it for the whole duration. No human interaction apart from the amazing PPEd nurses who would come and stop his machine from beeping.
No one could predict covid, but we can all learn from it.
Human interaction is vital. Support is vital. To let someone they are not alone is vital.
If you know a parent of a child with cancer during a pandemic, ask them about it. Chances are they will not be able to stop talking!
We need to be heard. Not in a ‘look at me’ kind of way, but because we have the whole weight of the world on our shoulders under normal circumstances, but covid has made that load a million times heavier.
So take a walk in my shoes, see what I’ve seen, hear what I’ve heard, feel what I’ve felt. Only then will you be able to start to understand the way I now am.