Tag Archives: liver cancer

26 and 1 day

4 Jan

I couldn’t find the words to write yesterday on Rosie’s 26th birthday. I woke up fine but then as the day went on, it was all a bit up and down. We’ve not gone away this year, for various reasons, so Chris and I decided to go and be a bit touristy and went to an art gallery/museum. Rosie liked a good gallery. Poor Sylv is ill, but had to work. Cal was off doing something or other – it turned out he’d ripped his only pair of non-jeans trousers so had to go and buy a new pair.

She’d have been 26 years old. So strange to have a child that old, because 26 is proper grown up and adulty. I wonder how she’d have celebrated.  Here she is, anyway :). Happy birthday, our beautiful girl.

In honour of Rosie’s birthday, TKOE is going to be making some donations again. We’re just waiting for a couple of Christmas donations to come through and then we’ll let you know who and what. It’s fabulous that people are still raising money through TKOE. We can’t thank you enough. It all goes to organisations that help friends and family of people who have cancer and other life limiting illnesses.

We’ve been wondering about keeping TKOE going or not – it’s a difficult decision to make. It won’t be finishing this year though because in the birthday gloom, a fundraising and getting fit plan has come together. Which makes sense, because on Feb 1st it will be 10 years since Rosie was diagnosed.

So, what’s the plan – there’s a brilliant scheme called Walk 1000 miles. You can have a look here https://walk1000miles.co.uk

What we’re going to do, is join this and for every mile we walk, we’re going to put some money in a pot. Say 20p a mile but it could be less, it could be more. For TKOE. That would be £200 by the end of the year. And if the walk is particularly easy or hard, we might alter the amount we put in the pot.  How fab is that??? And if you do it every day, it’s only 2.74 miles a day. Which is EASY.

And you can use any sort of pot and pay any sort of mileage. Here’s two pots which started today

So, who’s in? If you are, let us know as it would be brilliant to know who is doing it and raising money for TKOE. And if you’d like a TKOE t shirt, let us know and we’ll send you one :). For free. To say thank you.

And that, is all …. for now. 🙂 🙂 🙂

Jo xx



3 Jan

So, Rosie would be 25 today. 25???? That’s a whole quarter of a century. I wonder what she’d be doing – having a grand old time, whatever it was.

We aren’t going away for her birthday until Feb, to accommodate A level revision and mocks. Good job really because Chris has been ill since the beginning of time, it feels like. So that would not have been fun. Cal is going to the pantomime, as he officially has the best social life of all of us at the moment. We’re off to Reykjavik in 6 weeks though.

Not being away has been pretty hard. Got into a fairly pointless anger about her not being here. When we’re away it’s much easier to stay focussed on other things.

Anyway, what we can do is announce the birthday TKOE donations this year, which is a much happier thought.

Drum roll please……….

This year, Hope Support Services and Forget Me Not Childrens Hospice will get £1250 each. Yay 🙂 🙂 🙂

This is all thanks to TKOE supporters who have continued to raise money, one way or another. Thank you – it means so much to us and to all the other people who are helped by the work the organisations do. Rosie would be very proud.

We’ve still to hit the £50k barrier, but we’re not far off. And from April I’m going to be giving some more time to TKOE as I’m leaving my job to have a bit of a different work/life balance. More of that in a future post 😀😊😱

Here’s some pictures or our beautiful Rosie, 25 today.

Jo xx

Back from holiday

3 Aug

Um, ok, been a bit quiet on here for a couple of months. A couple of months….I’m not quite sure how that happened. Partly it was to do with tech problems – wifi, computer running slow, phone playing up. All the various devices which can be used one by one went through hissy fits.

And then it was being busy.

And then it was our holiday.

But we’re back now. And fighting fit. And so we should be – Cal, Chris and I have just canoed 70 km along the Dordogne river, interspersed with lots of walking and food and drink. So despite being probably the most active holiday we’ve ever had as well as being great fun, we’ve also probably consumed the most calories ever. Meanwhile, Sylv sunned herself in Dubai. Because it was hot.

I’m just gathering thoughts for how to raise another £1500 for TKOE to mark 5 years in Sept and also because that way TKOE and Team Kilburn will have raised £50k. So in these hazy restful days of summer, have you got anything to suggest??

Because cancer carries on and people carry on needing help and support. 🙂 🙂

It’s good to be back.

Jo xx

Junior doctors

15 Feb

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.

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.


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:


Happy times

Jo xx



Good start, good start

14 Jan

Hey! How’s your new year going? Ours is going pretty well. Cal’s back at Foxes and his project this term is to arrange, all by himself, his 21st birthday party. We pay. Of course. But he organises. He’s already decided venue, music, food – he’d forgotten about guests, but I guess that’s an autistic lad for you 🙂

TKOE’s started well too – we’ve had an invite to a charity talk, in June. And already we’ve knocked £182 off our £3k target. Thank you so much to mum and dad, Kath, Mike, Joe and Maddie, Richard, Alex and Michelle.


Jo xx



29 Jun

This time of year is lovely and sad all at the same time.

Lovely because it’s warm(ish), with light evenings and sun (sometimes). Sad because it will always be connected with Rosie’s last summer. And Race for Life.

This year Sylvie and her friend Shannon are running/jogging/walking three of them so they do 15k. All in memory of Rosie and to raise money to fight liver cancer. So today they were at Cheltenham. Next week it’s Worcester, the week after Hereford. If any of you want to donate, you can do it at http://justgiving.com/SylvieandShannon

We saw some of Rosie’s friends who have big plans for next year – helllooooo Becky – and we know other friends were there because we’ve seen their pictures. But somehow we missed them. That’s you we’re talking about, Zumba Natalie 🙂

I’d post some pictures but either the WordPress site or my iPad won’t let me. I’m annoyed now.

You been watching Glastonbury , football or tennis?

Jo xx


Sunshiny days

22 Jun

Don’t you just feel so much better when the sun shines? I’ve just come back from a fab 24 hours in Hebden Bridge made all the more special by the weather. And the midges. I can’t remember the last time I was in a midge attack. Chris was left home alone. He claims he had a party, but if he did he’s cleared up remarkably well.

TKOE has had news from a school which wants to raise money for us. So we’ve said yes. Of course. People are so generous, and still inspired by Rosie. Someone else has read her blog from end to end and was overwhelmed by it. It’s also Race for Life season now. Yay to Belle Bailey for doing 10k today in Rosie’s memory 🙂 :).

Brilliant news on Friday on the university results front. Emily, one of Rosie’s friends got a 2:1 and Amy, special Amy, only went and got a First. Special times for both of you. Well done!!!

Jo xx

We’re back, we’re back

2 Jun

Hello!! That was an unexpected break in blogging. That’s the longest the TKOE blog has been offline for 5 years. Have you missed us?? We’ve missed you.

Work was just crazily busy and overwhelming for a whole month which had an impact on the whole family. Then last week was a week of recuperation and relaxation with family and friends. And there was no physical time for any TKOE activity at all. Just nothing. Not to mention no spare mental space to string more than two words together.

Whilst that was going on, Cal has defied all expectations by doing well enough in his NVQ housekeeping at Foxes to be highly likely to be able to do additional NVQ modules in another discipline. So he’s back there for his third – and final 😦 – year in September. And then the really difficult bit comes – what is he going to do??

He airily texted Chris to tell him he’d had a blood test. Just a regular check up and he’d told the doctor ‘ow’. We’re not entirely sure if it was him having one or he was reporting on someone else. I suppose we ought to find out really. Concerned and responsible parents would.

Two things to report on TKOE – thank you John Paterson for your magnificent donation.

And thank you Hope Support for the lovely picture of the Y Team with the TKOE donation. See how they’ve customised it???? Thank you to all of you for raising the money for them 🙂 🙂


Back later – but not tomorrow because …. It’s my birthday 🙂

Jo xx

Hey. Guess what

15 Jan

 You know how some of you use Twitter and Facebook? Well you’ll know what I’m about to tell you. I know though there’s a fair few of you who don’t use them. And I suddenly realised, when I was picking up a lettuce tonight, that you might not know the latest bit of news. I’ve never found lettuces a good thought provider before, but I was grateful that this one was.

Because it’s pretty epic really. (The news, not the lettuce. That was just ordinary)

Did you know, that when you add up all the money you have raised through the inaugural art auction; the TKOE sales, the zumbathons, the Rocks for Rosie, the baby land snail sales, all the other fundraising you’ve done, and all the Race for Life stuff and direct donations, then you’ve raised around about £45,000.


That’s a rate of £850 per month.

That is astounding.

And then if you think that you’ve donated at least 60 units of blood now, you’ve saved or extended the lives of at least 60 people.

Just amazing. You are truly brilliant.

Here’s a celebratory photo Chris just unearthed.


Jo xx