Aunts and daughters

7 Feb

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.

More later.

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Jo xx

 

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

Inspirational-Part 2

24 Jan

Have been loving the newspaper articles about Alice Running for Rosie and Alice’s own story, this week. Drop into the online edition of the Ross Gazette to see what I mean. (This is not me being lazy by not putting a link in – I’m getting you to exercise your internet search muscles 😉).

I have though got another piece of news. We were contacted by Simona from Vienna last week. She was asking if it would be at all possible to link Rosie’s blog to the new website of the new International Cancer Epigenetic Society which launches next month, as it is so inspiring. Woah!

Chris and I always have a brief or long moment at times like these of wondering if it’s been noticed that Rosie has died, and how do we break the news and do people with cancer or an interest in cancer feel uninspired by the fact that Rosie’s story didn’t end with cures or remissions or anything like that.

But then we realised she had contacted me, rather than Rosie, and that Rosie and we found strength and inspiration from loads of different people’s stories and outcomes. And on top of that is the fact that Rosie’s words are inspiring. So of course we said yes.

Epigenetics is a pretty interesting and looking to be promising approach to cancer, so it’s good to be linked to that too. And we were pretty touched that they asked. Not everyone does.

Go Rosie, eh?

Jo xx

 

Inspirations – Part 1

17 Jan

Hello there everyone. How are you all doing? I’m working my way through a VERY long list of things to do, and have broken off to post this. Because this is a week of inspirations.

The first inspiration is a person. Her name is Alice Hibberd, and she’s going to run the London Marathon. She’s running it for Rosie, and she’s running it to raise money for our lovely friends at Hope Support Services. She’s running it because she wants to give something back to Rosie. So here’s what she means by that, in her own words:

“I am raising money for Hope Support Services on behalf of The Knock On Effect. (https://theknockoneffect.wordpress.com/)

Since Rosie created The Knock On Effect in 2009 they have raised around £47,000 for cancer charities in the UK.

This year they are aiming to get to the £50,000 mark, and I am going to help them.

Here’s why. . .

In 2011 I had just got home from handing in a uni assignment at 10 in the morning, still drunk and in the clothes from the night before. I checked my Facebook to find a status on my newsfeed that in all honesty, changed my life.

The status was an angry one-
Someone angry that her Facebook friends were choosing to destroy their bodies with alcohol and fags, whilst she was fighting a rare form of cancer, which had recently turned terminal. I couldn’t help but feel instantly guilty-Rosie Kilburn was completely right. Although I was not the wildest of students, I was at a point where I was failing my course, going out two or three times a week and not looking after myself. .

I went back through all of her blog posts, Although we were Facebook friends, we hardly knew of each other, I don’t think we had ever spoken. It turned out that whilst I had been drinking my liver away, Rosie had been fighting cancer for two years in an extraordinary way: she had set up her own blog, a charity art auction and her own not for profit business to raise thousands of pounds for cancer charities.

Rosie’s story gave me the kick start I needed. I started looking after myself; I started running, I joined a gym, I went out less, I studied more, I graduated, I got a job. I put my health first; both physically and mentally. Those who know me well will agree with me when I say that my life has improved dramatically & Rosie inspired me to do so.

But of course, Rosie would have given anything to have those luxuries- yet she left this world in 2009, aged 19. Only 15 hours before she died, she renewed the domain for her blog- she wanted her story to live on through her family, friends, and the thousands of people who like me have been changed by Rosie’s story.

I’ve always wanted to give something back to Rosie, and getting in to the London Marathon has given me the perfect opportunity.

Over the next 16 weeks I will be out in all weathers training for the 26.2 miles. 

Any contribution to sponsor me would be greatly appreciated. 

If you are interested in Rosie’s story please take a few spare minutes to look at the amazing work that ‘The Knock On Effect’ have been up to.

https://theknockoneffect.wordpress.com/”.

What an inspiration Alice is, herself. In a lovely unexpected connection, she works in the department at Gloucestershire College where Cal was, too. So hello to all of those lovely people too. You certainly helped him on his way to being the person he is now.

Now, Alice needs all our help, so if anyone would like to generously sponsor her, I’ll put the link at the bottom. I can see some of team TKOE already have done, so thank you for that. We’ll be following Alice’s training progress . This is soooo exciting. And a lovely piece of news for a Sunday evening.

……….

Hmm, the URL isn’t loading for her sponsor page. So, take yourself along to:

https://justgiving.com/Alice-Hibberd

Happy times

Jo xx

 

 

Clearing out

10 Jan

Yes, yes, I know everyone is clearing out at this time of year. New year, new start and those sorts of things. We’ve started clearing out too. This is the first house we’ve lived in for more than five years so we’ve not had the enforced clearing out when you move.

On top of that, I have found it almost impossible to clear out things that had some sort of connection with Rosie. Things she touched, that she’d have seen, that sort of thing.

It had though reached the stage where something had to be done. Time is helpful too. There were some boxes which contained a couple of the last things Rosie bought for herself. Sylv had the contents ages ago. I couldn’t get rid of the boxes. Empty boxes, from cheap fairy lights. For goodness sake.

Today though, I could. And inside one of the boxes I found a picture of Chris from when we first met. I don’t know why it was in there or how it got there, but that was a very cute find.

And then, in another pile of things, I found a book which Sylvie had made. It was very funny, with several photos. Including this one. Isn’t it lovely.

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Perhaps clearing out is a good thing after all 😀.

Rosie would have gone mad at me for keeping pointless things – and maybe she would have been right. The time needs to be right, that’s all.

Jo xx

Anne Frank, pancakes and lights for our 24th birthday girl

3 Jan

It doesn’t get any easier, this death thing, you know. So again we decided to celebrate Rosie’s 24th birthday away. This time, it’s Amsterdam.

Cal has been taken by the waffles and the photo opportunities – you can follow him on Instagram if you like looking at pretty amazing food pictures. Look for Cal Kilburn.

Sylv thinks it’s very pretty, smells of dope everywhere and has ridiculous staircases unsuitable for Chris and I.

Today for Rosie’s birthday we set off early for Anne Frank’s House. It is something everyone should go to. It’s almost impossible to believe what happened and throws another light on current atrocities too.

And somehow it was hopeful and reflective.

Given Rosie was a girl who could swing from sombre to joyous in a nanosecond, we followed up with pancakes. Previous Instagram reference applies by now , I should think.

And tonight we are going to The Festival of Light. I think she’d have enjoyed her day.

What was particularly fab about today is that there’s been some pictures of Rosie put on Facebook, a couple of which we’ve not seen before. So, if the technology works, I’ll post them at the end of this to share more widely. If anyone has any other photos of Rosie it would be great to have them. It’s nice to see her in different things.

We’ve also got the great TKOE annual donations to announce but you’ll have to wait a couple of days for that as we’re just waiting for a tally up.

It’s been a lovely day but a tough one. Not as bad as the first couple of years but this is the fifth birthday without her and that suddenly feels a long long time.

Missing her, loving her.

Jo xx

#quailquests and Christmas thank yous.

24 Dec

Tired and busy, that’s how we’ve been. Busy with Christmas rush, and Christmas parties and parents evenings and family gatherings and that sort of thing.

Busy with vets for cats, broken fridges and Christmas bugs. That sort of thing as well.

Whilst we’ve been doing that, Cal has been settling into his new home very well indeed. We can tell he’s settled by the way he adopts new phrases. Currently, anything slightly unusual starts with “Good heavens….” As in “Good heavens, look at those floods” as we drove over a river.

He had his EEG yesterday. He’s nearly at the end of the various tests after his fit in the summer. He is a natural hospital visitor. He examined all the wires very carefully and then sat completely still for 20 mins, only doing what the EEG person asked him to do. They both bonded over Sri Lanka and Cal’s 22nd birthday in March.

And whilst that is all happening, people carry on raising money for TKOE. We need a big shout out to Lisa Hardiman and the craft Faye which raised a very tidy £150 for TKOE. And the London Marathon fundraiser is about to go live too. Plus we’ve had donations in Christmas cards. Thank you all so much.

Talking of which, thanks to everyone who mentions Rosie when they contact us. It means an awful lot 😊

We hope you all have a brilliant Christmas this year, whatever you are doing. And thanks for all your support.

Jo, Chris, (Rosie), Cal and Sylvie xx

Cal is leaving home – official

6 Nov

Cal has got his place in a supported living house in Grange Village! 40 mins from us, and once he’s settled he will be supported into employment.

He’s moving in with another ex Foxes student and another young person. He’s very laid back about it. Chris and I are a bit nonplussed. Our boy, moving out and into his own place. How often shall we see him? What stuff does he need? Who will do our cleaning now?

He’s also seen the consultant about his fit. He’s sent him off for scans but is fully expecting that this is a one off. 85% of fits never happen again, apparently.

So, this is Cal tonight. And this is our TKOE dog, demonstrating our mixed feelings.

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Jo xx

Calling all crafters – especially local ones

1 Nov

On December 5th there’s a TKOE craft table at a local craft event. Lisa Hardiman, who is running it, is very keen to have any crafts from any TKOE supporters. So here’s the details 😀😀. Please help if you can.

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Jo xx

Cal and his over anxious mother

14 Oct

Cal is on his five day assessment at Grange Village this week. He was sooooo excited about going there. Made us realise how bored he probably was at home, just like any 21 year old would be.

On Monday night though, I almost completely lost it …. Because he hadn’t been in contact with us. He is a prolific texter and we’d heard nothing since midday. I KNEW there is poor mobile signal there. I know he was having a good time. I don’t expect him to be in contact every day. And yet, I went into a state because of two things: I worried that he’d be miserable if he couldn’t contact us; and I was incensed because I can’t contact Rosie and now I couldn’t contact him.

And at no point did I stop and think – why don’t I ring him on the landline? Which is what Chris did the next day, to discover he’s having a fine old time and has no problem at all with having no phone signal.

What was that about, eh? Understandable, I suppose, but weird, nonetheless.

Those of you blog readers who get Cal’s meal updates – just prepare yourselves for a week’s worth when he comes home on Friday :) :)

Jo xx

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