Here we go again…

Didn’t crazy eighties hair rockers Europe write a song like that?

Sorry about my absence, no excuses really – simply a case of balancing all of the things I’m involved in and sadly my gorgeous little blog got bumped down the list. It doesn’t mean I don’t love you. I’m good, had a bit of blip with my blood but all OK now. I’ve got some cool things going on so the blog will spark back into life now. Hurrah!

Firstly I’ll be at Impact Day for Leukaemia & Lymphoma Research this Saturday doing a speaky bit about my journey and their online patient services which are fantastic. Find out more here: www.leukaemialymphomaresearch.org.uk/event/special-events/impact-day-2014 If you are going please drop me a note or tweet me – I’d love to catch up with people.

The following weekend I’m off to Serbia, as a delegate, for CML Horizons 2014. I’m a 3 year veteran of this remarkable event which regularly attracts over 140 participants from almost 60 countries. It’s 3 long days with even longer evenings but it provides a great opportunity to network and get up-to-speed on the latest developments in the CML world. I’m being sponsored to go by Leukaemia & Lymphoma Research (LLR) along with their patient engagement manager. I’m delighted LLR are attending, I’ll be sharing my daily blog entries on their website.

Finally, I don’t do things by half, I’m pursuing some issues with the finance industry about life insurance cover for CML patients. Whilst traditional cancer patient are able to get cover after being in remission for a number of years, it is incredibly difficult to get cover if you have had blood cancer. I think this is partly down to the sector not understanding the new treatments available to us, I’m hoping to work this out. I’ll keep you posted.

I trust you are keeping well? Thanks for sticking with the blog. I’ll post at the weekend from Impact Day.

Kris

Leukaemia and Lymphoma Research Impact Day 2013

It was all about the ‘c’ word wasn’t it? No not cancer, the other one. Yes, CURE.

We had to wonder what Leukaemia and Lymphoma Research (LLR) were up to when it was announced they weren’t going to have an annual conference this year and instead have an Impact Day. What would the impact be? Were we simply victims of yet another marketing experiment to re-brand what we already knew? No. This was a day filled with hope, emotion, researchers, scientists, (the) Calendar Girls, volunteers, patients and the amazing staff at LLR. Credit has to be given to, Chief Executive, Cathy Gilman who has energised the charity, brought everyone together and invested in a challenging vision.

There was a distinct split between the morning and afternoon sessions and the morning documented how far blood cancer treatment had come. The day opened with the inspirational Daisy Turner, a transplant patient now in remission, who set the scene. I was privileged to have been asked to speak along with another patient Federica Nardella, a lymphoma patient. We provided the personal stories, first hand, for Dr Emma Morris and Professor David Grimwade, research scientists for LLR, who are the most engaging, lovely people you could wish to meet. We spoke about the magnificent treatment advancements, in particular the targeted therapies which are saving lives, like mine, and revolutionising the blood cancer battle. It was a humbling moment for me to be able to talk to an audience of fund-raisers and supporters whose efforts saved my life and given me a son. Only through the hard work of professionals like my consultant Charlie Craddock, Dr Emma, Professor David and Research Director of LLR, Chris Bunce, I got my life back. I’m just one voice, there are thousands. It’s that important.

It was fiercely obvious the afternoon was about business, not the dull stuff bathed in facts and figures, but where the charity is going next. Even though treatment has been revolutionised: more and more patients are being treated successfully, dare I say cured, the charity told us they are steadfast in not stopping until everyone is saved. I was particularly captivated by one of their mission statements which proclaimed, “We stop people dying from blood cancer“. Brave, bold and scary all at the same time. All of the work and methodology over the next 5 years is heading towards finding cures, making the lives of patients better and being daring. Yoda in the The Empire Strikes Back said, “Do or do not, there is no try” – whilst proving my geek credentials I also believe this is the direction LLR are taking. There is no middle ground here, they will either cure blood cancers or they won’t. If they don’t the progress made whilst trying is worth the effort and contemplation alone.

So at last we have a charity who are trying to do what is said in their literature: beating blood cancers. The room was invigorated, people filed out with renewed drive and determination. I felt like we were all part of something very special and what made this extra special was that there wasn’t a politician or bureaucrat in sight telling us we couldn’t do it. I don’t think they’d dare. There was grit and conviction and most importantly belief. Bravery too and the courage to make a real Impact on a perfect Day.

Me with the AMAZING Calendar Girls.

Me with with Dr Emma Morris.

Me with Federica Nardella.

Me on stage with Dr Emma Morris

Event: Leukaemia and Lymphoma Research Impact Day 13th April 2013

I’ll be speaking at this free event so please come and say hi if you spot me. Thanks, Kris

“We won’t be satisfied until every patient with blood cancer can live fully the life that they were given; a life where the diagnosis of a blood cancer has no impact.

In the 53 years since we started the journey to beat blood cancer, our mission has never been clearer: we stop people dying from blood cancer; we make patients’ lives better and we stop people getting blood cancer in the first place.

In 2013, thanks to the collaborative efforts of many throughout the world, survival has improved dramatically since research began in blood cancer, but there is still work to be done both in saving more lives and minimising the impact on the quality of life of patients before and after treatment.

Join us in London on 13 April to hear how we are doing, meet some of the amazing people involved and discover why there has never been a better time to make a positive impact on the world.”

Event details

Date: Saturday, 13 April 2013
Time: Starts at 9:00 am

Location:
Tower Hotel
St Katharine’s Way
London
E1W 1LD

http://leukaemialymphomaresearch.org.uk/event/special-events/impact-day-2013

Speaking and remission

I had some good news recently. My CML is still on the retreat and currently at 0.005% – on the verge of being undetectable – this has taken 5 years. As well as my brilliant support network I have to very grateful for dasatinib and all of the other TKIs that are giving people their lives back. It spurs me on…

I’m very humbled to have been asked to speak at various events this year and I’ll keep you up-to-date with where I am and when. If you find yourself in the same place please come and say hi – you’ll find me looking somewhat bewildered wondering why on earth people want to hear me talk 🙂

12 March 2013 – Medical Management Services – Melanoma workshop – London – DETAILS

20 March 2013 – Medical Management Services – Melanoma workshop – Warrington – DETAILS

11 April 2013 – Leukaemia Care – Leukaemia Support Group – Worcester

13 April 2013 – Leukaemia and Lymphoma Research – Impact Day – London

25 April 2013 – Leukaemia Care – East Midlands CML Support Group – Leicester

3-5 May 2013 – CML Horizons (11th International) – Expert Marketplace: Using the Internet in advocacy – Prague, Czech Republic – DETAILS

15 June 2013 – Leukaemia Care – Annual Conference – Worcester

All my best wishes,

Kris

Feel good factor and farewells at the Royal Albert Hall from just £10

The Calendar Girls have raised £3 million for Leukaemia & Lymphoma Research, inspired by the death of a much-loved husband, father and friend John Baker.

Their story has inspired one of the UKs most successful films, the most successful touring play and is likely to beat the world record for amateur dramatic performances too.

This is your only chance to hear the true story of the Calendar Girls, hosted by Alan Titchmarsh with performances and special messages from a host of actors from the film and play and some of the biggest names in the London West End at the Royal Albert Hall on Sunday October 7 at 6pm.

These already include Ricardo Afonso, John Alderton ,Edward Baruwa, Lynda Bellingham, Cantabile – The London Quartet, Janie Dee , DMJ, Tiffany Graves ,Jan Harvey ,Patricia Hodge, Sue Holderness, Celia Imrie, Lesley Joseph, Debbie Kurup, Peter Skellern, Richard Stilgoe, Stephen Tompkinson and Tabitha Webb. Beth Neilsen Chapman and Patrick Doyle will perform their iconic “I Find Your Love” from the film soundtrack and Tim Firth will perform a specially written tribute with Willy Russell – there will be many more surprises on the night!

This unique show, devised and directed by Hugh Wooldridge of The Night of 1,000 Voices will also feature popular classics and songs from favourite shows such as Rent and Carousel, ending in true WI and Calendar Girls style with a rousing chorus of Jerusalem- you’ll need tissues at the ready!

There is a 50% discount for friends of Leukaemia & Lymphoma Research, tickets are £10 -£27.50 and are available directly from the Royal Albert Hall Box Office: 02075898212 or online at www.royalalberthall.com quoting code 11206.

£1935.46 raised for Beefy’s Walk for Leukaemia 2012

Just a short, off-topic, post today about fundraising. Earlier this year I walked over the Clent Hills (near Birmingham, UK) with Kelly and Luca, aged 7 months old, in his pushchair. It was 4 miles but felt like 40. We finished pretty much at the back of the field having to lift Luca and his pushchair out of the mud for the final quarter. It was really tough.

Many readers of this blog supported me and I’m delighted to say we raised £1935.46. Since we started walking with Ian Botham 4 years ago we’ve raised nearly £5k now and this recent amount is our very best yet. I think we have Luca to thank. I’d also like to thank Aston Villa Football Club for donating a signed shirt that I was able to auction on eBay.

The money raised goes to Leukaemia and Lymphoma Research and we are delighted to do what we can. Thanks everyone.

Kris, Kelly and Luca

 

With Sir Ian Botham after the walk for Leukaemia 2012.

Charity walk with Sir Ian Botham

Hi,

I hope you don’t mind me writing with a charity request but in 2 weeks I’m doing another walk with Sir Ian Botham across the Clent Hills in aid of Leukaemia & Lymphoma Research. Over the last 4 years since I’ve had Leukaemia I’ve done 2 of these walks and have raised £2500 to date. It’s very humbling to think people have been so generous.

This year Luca is joining me and he very much looking forward to being pushed across the hills in his buggy.

Please sponsor me. You can visit my fundraising page at Just Giving by visiting the link below.

www.justgiving.com/krisgriffin1

I hope you don’t mind me asking but this is such an important cause for me. I have much to thank the Doctors, Nurses and researchers who develop drugs and have looked after me. They have afforded me life and Luca. I can’t ask for much more.

Big thanks for reading and I hope you are able to support me.

Kris