8 years ago …

31 Jan

we were sitting in a paediatric ward after a day of scans, frights and Calpol for pain relief. We knew we had to go to QE in Birmingham the following day. And the paediatrician came up with a group of other medics and said that whilst there was obviously something going on with her liver, he was pretty sure it was ‘nothing sinister’.

It’s a strange term isn’t it. Used only when there’s a chance of cancer. Which, until the next day at 12.00, hadn’t entered our heads as the reason for Rosie’s periodic flu like symptoms, the strange pains and the weight loss. Hadn’t entered our heads at all.

It was also pretty remarkable that Rosie sort of coped on Calpol with a bit of something stronger later that night (morphine? Maybe not. I can’t remember) But on entering cancer world she was immediately put on the type of pain relief that people pay money for on the streets. Our girl on drugs. Like all parents worry about, and yet here we were, urging her to neck them down and clock watching until the next dose was possible.

I’m writing this because tomorrow, at 12.00 I’ll remember that moment when Simon the surgeon got us all leaning forward gazing at a scan of Rosie’s liver. And he’ll point at it and draw our attention to a large area of white. And he’ll say “You see that. We’re pretty sure that’s cancer. ”

And after Rosie had burst into tears about her hair, her prom and her GCSEs (in that order), and Chris had had to lie down with his feet raised whilst Rosie had pointed out that this was supposed to be about her, not him, I’ll remember how our lives changed. How it snowed as we went for the pre-op tests. How the hospital driver said how sorry he was and how his wife had died of liver cancer; and that it was his birthday but he’d stay with us as long as it took to make sure we got back ok.

And I’ll remember him as the first of an extraordinary group of people who helped us all through the following years. We only met amazing people in the NHS and hospice worlds. Even the one or two people Rosie didn’t take to were technically brilliant. And as I read story after story of the NHS finances it makes me so angry. Because at its heart, our health system did our girl proud. And sometimes I think, what would it be like now?

Jo xx

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5 Responses to “8 years ago …”

  1. Jill January 31, 2016 at 6:26 pm #

    Such a lovely but sad post jo, xx

  2. Rose Mayerling January 31, 2016 at 11:40 pm #

    Thinking of you all as always , how time goes by and how we all deal with it ,
    XXXX xxxx xxxx xxxxx

  3. celia butler February 3, 2016 at 10:34 am #

    xx

  4. Chloe Taylor-Jones February 4, 2016 at 12:35 pm #

    Wise words – the NHS is generally a fantastic thing and we all need it to stay that way. With love xx

  5. Kailaa3 April 10, 2016 at 6:49 pm #

    I am not typically one to comment on blogs. I am not even sure how I came across TKOE years ago. I read faithfully from about the third month after the first post until about a year after you lost your dear Rosie. I never met her, but I wanted you to know the impact she had on me, a total stranger. I one week away from finals in my third year of nursing school. My goal is to be an oncology nurse. I was so inspired by the words she wrote, so raw and full of beauty even as she suffered. I hope I can help people suffer just a little bit less as they fight their own battles. I am not sure what made me come here today after so long, but something you mentioned in your post was so poignant to me. Your sentence “hadn’t entered our heads as the reason for Rosie’s periodic flu like symptoms, the strange pains and the weight loss”. One of the first things we are taught in first year during pathophysiology is that unintentional and drastic weight loss is a huge indicator for cancer. If anything comes away from my post remember that, and tell everyone you know. Sudden weight loss should always be investigated, even if you have no other symptoms.

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