The TKOE blog is 7 years old. Thank you WordPress for letting us know. I came on here to let you know.
I was going to copy and paste the first ever entry by Rosie. But when I went to look at it, I’d forgotten that she’d done a soft launch of it. So it was just a few words as she was setting up. And then I read on and discovered that this week was when she discovered her cancer had spread, so no liver transplant.
And then I found this picture. And I thought, that’s the one. She was miserable about her hair falling out and having it cut short. But she looked fab. So that’ll do me.
7 years. That’s a lot of blogging and commenting between us all. Thank you for following. It means a lot.
Just noticed the blog is nearly at 530,000 hits. That’s more than half a million. Jeez! So by the time you’ve all read this, it should go well over. Yay!! 😀😀
Thats not the only reason I’ve popped on here though. These two lovelies dropped by today to say hello and pick up some TKOE wear ready for the last few weeks of their marathon training. It was lovely to meet Alice and Meg. So proud of what they are doing.
Alice is at 91% of her fundraising target so if you are thinking of donating to her for Rosie, TKOE and Hope Support Services do it now so she can get to 100%.
And TKOE gets closer to the £50,000 raised 😉.
Link is in the last post.
Blimey! It’s not long now until Alice runs the London Marathon in honour of Rosie. So if you’re wondering what to buy instead of Easter eggs this year, run over to this place and make a donation to Alice and Rosie and our good friends Hope Support Services:
And whilst you’re at it, here’s some food for thought:
That’s Calum with an ‘l’, not Calum with two ‘ll’s. Thought it was time for a little update.. . . He’s doing BRILLIANTLY. He loves it at Grange Village. He still rings home most evenings, and he is always so happy.
He’s doing work experience at a cafe in Coleford. It sounds pretty busy there, and he’s front of house. Front of house. As in, taking people’s orders. I hope he’s polite when he does it. Sometimes he can be quite brusque. But he’s impressed them with his very neat writing and his ability to make his way round a menu.
When he’s not doing that, he’s on a giddy round of pottery, helping in the cafe in the village, wood work, cleaning his flat bathroom (he never refers to any other room….), various clubs and choirs and dancing, cinema and travel training on the bus.
The only downside for him at the moment is that he may have had another seizure. No one saw it but he had a bump on his head one morning. So we’re waiting to hear what the nice neurologist has to say about that.
And just to show how cool he is, he was in a minor accident on Friday involving the car he was in and a bus.. . (don’t worry, it must have been pretty slow moving). We would never have known, had we not had a phone call to let us know he was ok. He was just intent on telling us where all the best Easter eggs are at the moment. And then when we quizzed him about it, he very impatiently said he was fine and that the trip to A and E (or Andy as he texted it) was just for a precaution. And then he changed the subject.
Love him. Found this picture of him aged about 16, with a not very good picture of Rosie and Toby. With his trampolining cup.
Have a good week.
I wonder why we don’t take photos at funerals very often. I ask this because Cal began to at my Auntie Pam’s funeral. That was just before he ate six cakes.
She had a good send off, lots of people, lots of memories, lots of laughing. There was an incredibly generous collection for TKOE at the end – thank you everyone.
Here she is at the start and nearer the end of her long long life with her lovely sisters:
She’s the dark haired little girl (my mum is the other side of baby Auntie Phyl). And then she’s the one second from right with her arms round Auntie Phyl and my Auntie Jack, who died five years ago. And my mum is on the edge again. Why’s she on the edge?
Cal was 22 on Thursday. 22. How? He had a good go at recreating his birthday party epic meal from last year, complete with cocktail sausages and the sophistication of hummous.
And then today my lovely children treated me to a full cooked breakfast at Gloucester Services, chocolates, flowers and a potato. Look:
It could only be improved if it was roasted 😎. And if you’ve never been to Gloucester Services, you should. It is like no services you’ve been to before. Unless you’ve been to Tebay.
Well! At last I am delighted to announce that someone in Greenland has read the TKOE blog 😀.
This has pleased me A LOT!
Look, here’s how I know
Hello and welcome and thank you for reading.
Oh, and the Buckingham Palace event went very well, you’ll all be pleased to know.
Hah! Thank you for the response to the Junior Doctors post. I’ve had a massive response and it’s good to know it’s struck a chord. The thing is, this is our NHS. We all fund it and have a stake in it. It’s worth showing our support and lobbying where we can.
Now then, surprises are lovely things. These last few weeks there have been a lot of Rosie memories and mentions from all sorts of quarters. A particularly excellent contact came yesterday though from Peter Branson who is the Chief Executive ( is that his title? He’s Very Important, anyway.) of Forget Me Not Childrens Hospice in Yorkshire.
Rosie was very proud of her Yorkshire roots – she was born there and was half Yorkshire. And there is a glass brick in the hospice celebrating Rosie after some TKOE fundraising. Peter showed us round some time ago, but I never expected to get this – what follows are his own words:
I hope you and the family are well. It has been a very long time since I have been in touch, but I wanted to drop you a quick email. I have meant to for a while but something prompted me to do so now, as I will explain below.
I often think about something you said a long time ago about Rosie – that one of her fears was that she would be forgotten. I just wanted to let you know that in this small corner of Yorkshire her memory is still very much alive. The block in our Celebration Wall with her words on still shines brightly – and whenever I am showing the wall to anyone I always mention Rosie. But as well as that I thought I would let you know that her name is going to be mentioned next Monday somewhere special. You may have seen that a couple of years ago Princess Beatrice became our Patron – on Monday she is hosting a small lunch at Buckingham Palace for us (only the 2nd one she has done) and I am planning to mention Rosie in the speech I am giving at the event. I didn’t know her so I won’t be saying much about her, but I will be mentioning her briefly – and I thought I would let you know ”
Isnt that just so thoughtful and unexpected and well, just , heart-warming? So, a public thank you to Peter. I hope Monday goes well.
I’ve wanted to write in support of junior doctors for a while. Then yesterday Facebook kindly shared memories of 14th Feb over several years. This included Rosie having her first internal bleed. Very romantic. So I read her blog for those days. And it reminded me
of the very sweet junior doctor in A and E. Who kept Rosie calm and interested. Who arranged tea and toast for me, at which point I knew this was pretty serious. Who patiently organised a bed on a ward. Who dealt with many more people. And who, several days later, came to find Rosie to see how she was, because she had been so worried about her. Who said hospital was no place for a young girl like Rosie, even though she was not much older herself.
Of the junior doctor who made the call on the night of Rosie’s biggest bleed that whilst she was terminally ill, she was only 19 and it was worth fighting for her to have a bit longer.
Of the junior doctors who answered that call and came in with the consultant that Sunday night, who were so eager and keen to do what they could. Who made Rosie laugh and told her what they’d really like to be doing at 3.00 am in the morning.
Of the junior doctor who was on duty the night Rosie died. Who treated us with such compassion. Who decided Rosie shouldn’t be hooked up to machines for her last hours. Who wept when she had to confirm there was no longer a heart beat.
At the time, it hadn’t really registered that they were junior doctors. But they were. All of them working in those death/life early morning hours, always on a weekend. Taking decisions which gave us those wonderful extra weeks with Rosie, and creating a place where Rosie felt safest. Not at home, but surrounded by people around the age she would be now.
Don’t you think the jobs they do, and the decisions they make are worth more pay than they would earn in a supermarket? Don’t you think they deserve all of us to nurture them and to make their working life as safe as it can be, so they can give the best treatment they can? Don’t you think the government should listen? I know I do.
On Friday 5th Feb, my Auntie Pam died. Suddenly. Even though she was 84 years and 9 months and 12 days old, that didn’t make it any less of a shock. I will do a longer blog about her when I’ve gathered a few more thoughts. Let’s just say for now though that she was funny, and huggy, and our family historian and memory bank, and hugely interested in what everyone was doing. In short, she was a brilliant aunt, and sister and mum, and we shall miss her. Lots.
In what is either a strange coincidence, or, my personal favourite theory, proof that family gatherings continue in death as in life, she died on the eve of the 5th anniversary of my Auntie Jack’s death. I like to think they both had a good catch up yesterday. She too was a brilliant aunt, sister and mum – in my head I still find it difficult to distinguish her from Julie Andrews – a mix of Mary Poppins and Maria. That may be though because she was my go to aunt for trips to the cinema and swimming.
She, in turn, died on the eve of the anniversary of Rosie’s first major operation. That was 8 years ago today. So between them they’ve managed to seriously muck up February. And yet, and yet, managed to coordinate it all over a weekend. Not that it will always be a weekend, but it’ll always be three days in a row. Which is kind of helpful too.
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?