I wrote most of this back in December, after Poppy’s latest lumbar puncture. With another one taking place last week, I’m reminded that I left this unpublished, so here it is to express our ongoing gratitude to the NHS and some of the special people we have met as a result of our experience…
Tuesday 18th December 2018
I keep reading and hearing stories of children being taken back and forth to the doctors before being diagnosed with cancer. Stories of parents feeling neurotic, but knowing that something with their child isn’t quite right.
Our story isn’t one of those. Far from it. Between Wednesday and Friday of that infamous week, I was concerned about Poppy in the same way that any parent would feel sympathy with their child when they’re unwell. I hoped it would soon pass, but certainly didn’t think it was anything serious. I was even surprised when Graham suggested calling NHS Direct on that Saturday morning. Having been at work during the week, he hadn’t seen much of Poppy during the daytime, but was concerned that her high heart rate still remained and thought it should be checked out. We went along to the out of hours GP who felt that Poppy’s presenting symptoms were enough to warrant a trip to Gloucester Hospital. Alarm bells still weren’t ringing. If that doctor had any idea of what it might be, she certainly didn’t let on during our time with her and we left thinking we were in for a routine wait before being sent home. Poppy’s consultant did later say that the GP’s paperwork had included ‘pale’ which was key to her diagnosis so she may well have suspected more than we perceived.
We spent most of the day in the Paediatric Assessment Unit, buying expensive snacks and trying to keep the girls entertained in the small playroom. There were small intervals of tests and conversations with doctors, but at no point did I think anything serious was on the cards. Poppy spent the time bouncing around the playroom and sitting up at the table colouring. Slowly, the seemingly poorly children around us were sent home until it was only us and one other couple with their baby who remained. I breastfed Daisy for the last time in that room, before my parents arrived to collect her. Now knowing that we were being admitted and would spend the night. It’s here that things get hazy. I can’t properly recall that night, only that Leukaemia was mentioned for the first time. Even then, I distinctly remember thinking ‘That’s awful. But it won’t be that” and believing that wholeheartedly. Denial maybe? Or just completely oblivious. I still don’t know.
My reason for recalling all of this is that today we said goodbye to one of Poppy’s two consultants. She was in PAU that first day, and we saw her several times over the next few days. She was the one who explained that Poppy might need a Bone Marrow Aspirate, and was there again when might and if, became a definite when. Then, when I dared to say Leukaemia out loud, she told us that though the treatment is long and arduous, children do often get through it. In the corridor of the hospital, she told me that she was a mother too. During our goodbye today, she mentioned that the children of Poppy’s age she sees in follow-up clinics often don’t remember much at all of their experience with cancer. Reassuring to the very last, I have trusted her instincts and calm, caring nature since day one and I still miss her greatly.
The care we have received from the NHS has been incredible at every step of this wayward journey. I’m sorry not everyone has had the same experience, and I know that when it’s your sister, your dad or your daughter you feel the flaws more keenly. Back in Bristol, when my thoughts were in overdrive, I tried to write down as much as I could. Not very coherent; it’s jumbled scribbles jotted down in double quick time often in complete darkness as sleep alluded me. One legible page lists the special people we had encountered so far. By the time we left Bristol on 6th April, our combined stay in both hospitals produced a list of 13 people. Some of those names, faces and conversations are ones I don’t think I will ever forget. SweetP’s Doctor P sits firmly in that list, earning her place even before she later became Poppy’s consultant.
I stopped keeping count after a while, but it’s safe to say that my mental list of special people keeps growing all of the time. It includes many people we’ve encountered in the hospital, as well as other families in the oncology unit, the tremendous family and friends around us, the incredible people from the many cancer charities we’ve been introduced to and the many, many people who have so generously given to Poppy’s gofundme campaign, including a fair few who we have never even met.
To everyone in our corner who keeps us going…thank you. I used to be a thank you card type of person, but I’m afraid that has often passed me by this year. Understandably or so I’m told, but it doesn’t stop the guilt creeping in occasionally, wondering if the special people in our lives know just how much their kind words and ongoing support means to all of us. I can’t imagine treading this path without you and will spend the rest of my days trying to pay this kindness forward in every way I can, whilst also teaching our girls to follow suit x