In case it wasn’t obvious, it’s really difficult to tell someone your child has cancer. It’s difficult to get the words out without choking up and of course, it’s a very difficult to know how to react, if you’re the one getting the news. When Arthur was first diagnosed back in March 2017 I remember those first few phone calls. To my parents, to my boss, to a couple of close friends. Nobody knew what to say – me included.
Once Natalie and I had the beginnings of our support army, we did our best to update everyone as often as we could but again, faced with the enormity of what we were dealing with it didn’t feel like text messages were appropriate and we certainly didn’t have the strength to make 20 phone calls a day, so we decided we’d write a blog. A way to update those who wanted to know what was going on without feeling like we were pressuring people to immediately respond.
I never thought it would be read by many people, although from day one I tried to write it in such a way that hopefully people would want to read it. I wasn’t sure why, but it felt like that would probably be the best approach in the long run.
When Freddie was diagnosed a few months later this blog became something more important – for me at least. It was a way I could try and articulate what was going on in my head without worrying too much about the tears that all too often would accompany my scribblings. It helped me. The comments from you all helped too. Gradually that inner circle of 20 or so readers became 30, then 50, then 100 or so. In an era when so much is done by people for likes, or to increase their followers, it was really wonderful that our blog, a blog that centred exclusively on one of the hardest things a parent can go through was reaching more people. Just because people cared.
Here we are, 47 chapters later and my blog stats tell me we’ve had around 50 thousand visitors to the site. 120 thousand views, give or take and more kindness than we ever imagined would get thrown our way.
Therefore, I wanted to make sure that something that people took an interest in, eventually drew to some sort of conclusion. So blog-wise, I’m going to be checking out now. I think I’ve written about as much as I can. I’m aware there are a few people follow the blog who we don’t know so it felt like one final update from me is the least I can do.
Our cancer journey – god I hate that expression, let’s dip into Swahili and call in a cancer safari instead, I feel Freddie would prefer that. Our cancer safari won’t really come to a conclusion. Arthur, almost 3 years into remission now still has that cloud over his head. True, the cloud is a lot less greyer now, but he’s still having his scans and his check ups and that won’t stop anytime soon. Secondly, the loss we feel caused by Freddie’s absence is a permanent feature in our lives. Over the last couple of years I’ve come to realise that in my case, grief isn’t something that will heal in time. Freddie’s death impacted me in ways I never realised it would. It has shaped almost everything I’ve done in the last two years and barely an hour will go by, on any day, when I don’t think about him and his wonderful little face.
Overly deep sentiments aside, I still think I’m doing ok. Over the last couple of years I’ve taken myself well out of my comfort zone trying to piece together what happened and although I still have a long way to go, I’m getting there. I’ve come to realise this isn’t something to get over or come to terms with. It’s an enormously significant part of my life. I don’t need to be ok with it, but I’m not going to pretend it didn’t happen. I’m still going to talk about Freddie and offer my perspective on what it’s like to lose a child, but I’m aware I can only talk from my experience. Grief is personal. There’s no manual to follow to get you through it so what works for me may not work for others. I’m not under the impressing my musings over the last few years were anything more than that. If you’ve laughed, cried or maybe even found something I said insightful, then that’s great (well, not the crying bit, but you know.)
Natalie shared this on Facebook last week. It’s probably a better written version of what I’m trying to say. And, in my case at least, I think it sums up grief as well as anything I’ve read. It was written by Dr. Joanne Cacciatore in 2015:
In the midst of intense suffering, it is impossible to imagine that this peculiar and powerful pain will ever end, that life can ever be “normal” again, or that the tears will run dry. Some admonish grievers for continuing to feel sad months and years and even decades later. Others boast that it is time that heals. Certainly, time allows some necessary space, a retreat, from the despair of early grief. But I see this process a bit differently.
For me (everyone is different), my grief has not diminished. I can still access the very deep grief of losing her. For me, this idea that time weakens grief has not been truth.
Rather, I feel that I have become stronger; strong enough to carry that grief throughout my lifetime. Eventually, I became strong enough to help others carry their grief.
In this alternate algorithm, I have gained strength and power I never imagined I could possess. Was the cost too high? Unflichingly, yes. And, the other side of that truth, nearly 21 years later is that I am more content and stronger today than I would have been without having known and loved my precious daughter who died. Still, I would gladly give back all my newly found ‘superhuman muscle” to have my dead child physically present in my life… in a heartbeat.
That’s very deep I know. I’m not quite at the strong phase yet, but this path feels pretty logical based on my last couple of years.
So, how about Arthur? He’s amazing. We got his last scan back a couple of weeks ago and there’s no sign of the tumour. That’s getting on for 3 years clear which is wonderful. Not quite out of the woods, but the trees are certainly thinning out a bit.
He’s been at school since September and he’s settled in brilliantly. The school themselves have been wonderfully supportive, but when it comes to Freddie I think Arthur takes the lead. He talks about him a lot, sometimes very pragmatically and sometimes in ways that are a little tougher for us to hear. I think he’s incredible and I just cross everything that he never has to go through anything like this again. We all do.
Natalie may choose to write another chapter at some point so if she does, I’ll let her tell you how she is. As I write this she’s in an interview for an amazing job, whilst finishing off her PhD in between strapping herself to a plane to raise money for the amazing Alice’s Arc.
And here I am, just impressed I managed to find matching socks this morning.
So there we go. Whilst our story may be over for now, for millions of others the journey is just beginning, so please continue to support wonderful charities like Alice’s Arc and of course the incredible team at Great Ormond Street.
We always tried to fill the blogs with photos. These days that stirs up all sorts of emotional “this should have been” type thoughts, but I wanted to leave you with something awesome. There’s an artist on Facebook called Angus Olsen who draws images of what it’s like to live with childhood cancer. Unsurprisingly this comes from his personal experiences, but his artwork is amazing – you can check it out by clicking here. Angus said I could use one of his images and that seems like a good way to sign off.
So for the final time, for me at least, thanks for following our story. I know I’ve said it a million times, but having our own little army meant the world to us. Just like the subjects of this story, you’ve been boiling awesome, in fact the best ones ever.
Look after yourselves.
Lots of love, Martin, Natalie, Arthur and always Freddie xxx