MUM’S THE WORDS

MUM’S THE WORDS

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Katie Smith started a blog just over two years ago. It must seem like a lot longer at times. Mum and writer Katie decided to share her experiences with us all when her daughter, Poppy, was diagnosed with Acute Lymphoblastic Leukaemia in early 2014. The blog tells the stories of what happened next. By Alan O’Hare.

I remember exactly where I was. The telly was on and I was ignoring it to scroll through Facebook.

One of the lads was moaning about Everton, another mate was giving it with both barrels to a new band who weren’t cutting the mustard and my notifications were telling me that some gobshite wanted me to play a daft game. Katie Smith’s name popped up and I couldn’t believe what I was reading. Kate’s an old mate and she hadn’t written anything for a while, as she was concentrating on raising her beautiful young family (she has a little boy, Oscar, too).

“It’s been a long, long time since I’ve felt the need to write anything more challenging than a shopping list, but this just feels like something I need to do,” she wrote. “I’ve never felt more useless in my entire life. When it mattered the most and my baby girl needed me more than ever, I had nothing… so, in some tiny insignificant way, I figured if I got some of my thoughts out it may help me keep a clearer head when it needs to be about Poppy – and what I think and feel doesn’t matter.”

The tears streamed down my cheek and I looked up to tell my wife all about it. Communication moves me, you see… it moves all of us. And when Kate decided to share something so private with the world, I couldn’t help but admire her bravery. But not just that… it was the fact that in her darkest hour, she’d turned to her instinct and put pen to paper. A smile broke through the tears rolling down my cheek and I thought of the guts it must have taken to press ‘send’ on that first blog post.

There’s been loads more since. The readers were there when Poppy first visited the Oncology Department at Alder Hey; when a friend of the family sent a Facebook message to the Pope for prayers (Kate laughed at the Pope having a Facebook… it is a bit mad that to be fair); when Poppy’s treatment started and her dad, Kev, had his hair shaved off and raised a lot of money for charity; and when Poppy started nursery back in November 2014.

The blogs became a little less frequent as Poppy received her treatment and then went on Maintenance: “I can remember reading a while back that people who write blogs about cancer tend to go a bit quiet when the patient is on Maintenance,” wrote Kate. “After the intense beginning and working through your thoughts, things are somewhat calmer in the later stages of treatment… I wish there were some great reason, that we’ve all been incredibly busy doing exiting things, but the truth is that we’ve been getting on with life. And, to be honest, I shouldn’t really apologise for that.” They were the best words the readers of the blog could have hoped to see. ‘Getting on with our lives’ is what we all do. But it doesn’t half help to know that someone else is doing the same.

Kate posted a new blog last week, you can read it below, and it finished with some positive news for the family: “We’ve had the date through for Poppy’s end of treatment… and the point that I could never let myself imagine in those early days, finally seems within our grasp.” But it was eleven words written earlier in the blog that took me back to that night I was sat on the couch reading all about Kate’s new world… and the tears fell again as our hero talked about her little girl’s new school friends not just knowing her as the girl with cancer anymore: “She could just be Poppy. The one with the red hair…”

Taken from OurNewNormalBlogDotCom

“2016 started on a positive note, marking what will be the year that Poppy’s treatment finishes. It felt good to have something so momentous to look forward to, finally a light at the end of what has been a very long road. As with all new years, I often start by thinking backwards to what has passed too. And, an email from WordPress on New years Day gave me the disturbing news that I’d only written two blog posts last year. Pretty bad form by me and a wrong I intend to right this year.

I remember reading somewhere that ALL blogs tend to get pretty dull when patients start maintenance, as nothing much happens worth writing about. I dispute that theory, though. Certainly things may not have been as dramatic as the early days of diagnosis and the first stages of treatment. But, I don’t think that being on treatment for Leukaemia could ever be described as dull – more that we have settled into a routine which still involves frequent hospital visits and medicine. It’s become a way of life for us as a family, Poppy’s bedtime routine is medicine (chemo), brush teeth and bed. It’s only when I relay our schedule to others that they seem surprised at what it involves. We’re still in hospital regularly, checking temperatures frequently and watching Poppy have chemo in her line and a course of steroids every four weeks…

Poppy’s world may keep turning but there is not a day that goes by when cancer and treatment are not a part of it. We see Poppy doing so well and looking so healthy, but terrible news from hospital can filter through of children the same age not being so lucky and you can be brought back down to earth with a bump. I suppose what I’m trying to explain that it makes life feel extra fragile… I assume it always will. Our future may be finally looking positive, but it will never feel the same again. I think all our lives have changed beyond measure. I know I’m certainly not the same person I was two years ago.

Generally speaking, Poppy has been pretty well and healthy. The latter part of 2015 saw some pretty big changes for us all. In September of last year, Poppy started school – a huge achievement in so many ways and something I could never imagine her being well enough to do. Poppy’s school have been exceptional with the care and support they have shown towards her. Helpfully, the nursery she attended was part of the school so everything was already very familiar to her. Before she began, I liaised with the staff and a MacMillan nurse came along and we were able to ensure everyone was up to speed. It was a difficult meeting for me, as I felt there was a difficult balance to strike between meeting Poppy’s additional needs but not wanting to single her out as different in anyway. In many ways it felt as though starting reception was a fresh start for Poppy, so different to when she started nursery and looked visibly ill with no hair, and underweight. As the classes had changed, not all the children and their families knew Poppy – she didn’t just have to be the little girl who had cancer any more.

She could just be Poppy. The one with the red hair. And she was. I found I would instinctively want to talk about Poppy’s treatment to the new parents I was meeting – but stopping myself, as amazingly, it wasn’t what they knew her for.

Adjustments all round. The new school year meant thirty children spreading germs and it wasn’t long until we found ourselves back in hospital. Poppy seemed to catch every virus going and at one point she had an ear infection, a chest infection and the flu. This also coincided with Oscar starting nursery (and him making his feelings very clear that he was not pleased about it every time I dropped him off) and us moving house. They say that moving house is one of the most stressful things you can do, but although it was, we couldn’t have been happier to leave our old house – with too many bad memories and everything good tainted by it being the place where the worst time of our lives occurred.

So, the year sped on and before we knew it we were in our happy house with Poppy settled at school and doing well. Oscar was even crying less and less when we took him to nursery! It’s easy to become superstitious when you have faced what we have with Poppy, and I am a worrier by nature, but perhaps finally we were beginning to see some light creep through the dark. We’ve had the date through for her end of treatment and the point that I could never let myself imagine in those early days, finally seems within our grasp.”

Read Katie’s blog here: OurNewNormalBlogDotCom
Pic courtesy Katie Smith

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