#Kris10 Final Total of £11,284.73

Delighted to say that I’ve officially raised over £10,000 for Leukaemia Care in celebration of reaching 10 years since my diagnosis of chronic myeloid leukaemia (CML) in 2008.

I decided on a £10,000 goal because I was marking 10 years since diagnosis. I came up with a variety of ideas to raise the total including a gig at the world famous Cavern Club in Liverpool, a sponsored 10-mile walk, an eBay auction for signed Big Finish scripts, a number of non-uniform events at schools and much more. You can see everything I got up to by searching #Kris10 on most social media platforms.

I’ve smashed the target, raising an amazing £11,284.73 – and that’s without adding the Gift Aid, a conservative estimate would be nearer £13,500.

The funds will go a long way to helping us ensure we can be there for anyone affected by a blood cancer diagnosis.

A HUGE thanks to everyone who played a part in my #Kris10 year, it was hard work but really worth it. Thank you. Kris

Roman Reigns & Me vs Leukaemia

When I got up this morning, trending on my Twitter feed was the news that the WWE (World Wrestling Entertainment) superstar, Roman Reigns (real name Joe Anoa’i), was in remission from leukaemia. In was in October 2018, in front of a packed arena, holding the Universal Championship belt, that he told the world that he needed to take time away to face the disease.

Just five months later he’s back and we should be celebrating this. But some people aren’t. Some wrestling fans think this is a work. Just to bring you inside the business a little, a work is an act that manipulates an audience in order to elicit a desired response. This is not a work. And my first feeling toward the people who were saying this was to scoop them up, slam them down on the canvas and cover them for the 1-2-3.

But I won’t. You see, there’s a fundamental flaw in all of this, Roman’s remission appears to be too good to be true. Looking great with all of his hair, five months after diagnosis doesn’t fit in with the traditional narrative of a blood cancer patient. Cancer doesn’t work like that, does it?

Actually, yes, some blood cancers do. I’ve had a similar type of blood cancer to Roman called chronic myeloid leukaemia (CML)  for 11 years now. I take a small white tablet every morning called a tyrosine kinase inhibitor (TKI) and it puts my leukaemia back in its box on a molecular level. I’ve had bad days where I’ve felt tired or a bit sick but I’ve carried on. I work full time in education and haven’t taken a day off sick through anything related to the leukaemia. It took me about 9 months to reach a haematological level of remission, in that my blood looked OK. It took 6 years to get to a molecular level of remission and now my leukaemia is pretty much undetectable. I’ve never lost my hair and I’ve never had traditional chemotherapy.

You see where I’m going with this? Roman is an elite athlete and it might surprise you that I’m not. We’ve both fought our leukaemia in our own way and in our own timeframe. But there is one thing that I guarantee will annoy any leukaemia patient who is in remission, that’s someone saying, “well, you don’t look sick!” Right now, that’s happening online. Can’t we celebrate Roman looking great and happy or would we prefer him hooked up to a drip, pushed out in a wheelchair? That’s our traditional view and if our traditional view has been upended, it isn’t a lie.

The treatment that has given Roman and me our lives back was hailed in 2001 by Time Magazine as the magic bullet for cancer. Times are changing, we’re the trailblazers and millions of people are now living because of that little white tablet. They aren’t having devastating does of chemotherapy and in most cases, after taking the tablet they are able to go to work or smash someone around in a wrestling ring. It’s still not perfect, some people get side effects from the drugs but as the treatment improves, so will the quality of life.

We’re winning this battle and if we can win this one, we can win other battles against cancer. So take the time out to celebrate this, think of a world where we could treat cancer with a tablet; isn’t that what we’ve been wishing for? I’m living proof. Roman Reigns is living proof and so are millions of patients across the world.

But, let’s not forget, and Roman knows this all too well, leukaemia can relapse. We’re all living on a knife edge from appointment to appointment. My appointments are six months apart and I still get nervous, I’m sure that I always will. It’s a strange way to live…but it’s better than the alternative.

If Roman wants to make an even bigger difference he’ll tell his story. He’ll educate people, in detail, on the journey that he’s been through and he’ll tell them why, after five months of being diagnosed with blood cancer, he looks fantastic. Give people even more hope and help them understand that whilst we are a long way from winning the war, we are fighting back.

Please share this, it’s a great opportunity to educate people on blood cancer which is the third biggest cancer killer behind lung and bowel cancer in the UK.

Kris is 43 years old and lives in Kidderminster with his wife and young son. He is a trustee for Leukaemia Care and to celebrate his 10 years of diagnosis he raised £10,000 for the charity. If you are a wrestling fan (or just someone interested in this story) and want to get involved with the charity and raise money, please visit https://www.leukaemiacare.org.uk/support-and-information/latest-from-leukaemia-care/blog/wrestling-fundraising-ideas/

Kris holding his leukaemia treatment in tablet form.

#Kris10, Mission Complete

I suppose that I should have written this before I hit the target but it felt a little presumptuous.

I now struggle to find the words to convey the joy and relief I feel in hitting the £10,000 #Kris10 target for Leukaemia Care this morning. Thank you is a good start.

It’s taken nearly 11 months and it’s been really, really difficult. The walk and the recent Big Finish auction pushed us hard towards the line but there have been plenty of moment where I felt that I’d bitten off more than I can chew. It’s hard not to take things personally especially when the cause is something so personal. I’ve developed some thicker skin and a newfound appreciation for professional fundraisers. In fact, I just don’t know how they do it, it’s an incredible skill.

Nearly 11 years ago I was diagnosed with leukaemia but you know that story. The story now is about supporting people who are diagnosed with a blood cancer today, tomorrow, next week… Treatment options are improving and we’re making inroads into earlier diagnosis. There is a huge psychological impact on the patient after diagnosis and the emotional impact leaves lots of damage. Leukaemia Care do an incredible job supporting patients and families with the seismic shift a diagnosis brings and this money will make a difference.

Is there a better Christmas gift? We’ll save lives with this and given that you are reading this you are likely to have been part of this story and I genuinely can’t thank you enough for your support.

There’s always a long way to go; work like this will never end and our relentless commitment to making people’s lives better is worth it.

So, take the baton, run a marathon, jump out of a plane, fly down a zip wire or sit in a bath of beans. Go and write your own story. I’m done for now. It’s nap time. Happy Christmas.

www.justgiving.com/kris10

Birthday Thanks

Just a huge note of thanks to everyone who donated and sent birthday wishes. I raised £343 towards my #Kris10 campaign. That’s a lot of socks and pants.

We’re fast approaching £2,000 and we’ve taken a step closer to that HUGE £10,000 target.

Never too late to donate. www.justgiving.com/kris10

Big thanks. Kris.

Happy birthday to me!

Happy birthday to me, happy birthday to me, Happy birthday dear me, happy birthday to me.

That all sounds rather self-congratulatory but I’m using my birthday as a weapon to raise money so I’m vindicated, forgiven and a year older.

Ten years ago when I was diagnosed with chronic myeloid leukaemia (CML) I wasn’t sure if I was going to live to 33 and now ten years later, I’m still here age 43; pretty good at maths too!

To celebrate the ten years since diagnosis (or as the Bee Gees would say, Stayin’ Alive), I’ve set myself a challenge to raise £10,000 for Leukaemia Care, the Worcester-based national charity that I’m a trustee of. The money will be spent training more GPs about the signs and symptoms of blood cancer. It will save lives.

So instead of showering me with gifts and cards this year, I’m encouraging you to throw money at me. That’s right, I’m making the ultimate sacrifice and giving up my birthday. No new socks and pants this year but we all get a warm and fuzzy feeling for doing the right thing.

Also, I got a target to hit, that £10,000 isn’t going to raise itself. So, join me, in wishing me, a happy birthday. Donate at www.justgiving.com/kris10 or text KTEN99 £5 to 70070 to donate £5.

All together now…for he’s a jolly good fellow…

One Week In For #Kris10

We’re a week in, only 51 weeks left to go! If you haven’t donated yet there’s plenty of time.

Nearly £900 of donations have come in, we’re approaching 10% of our target. I’m absolutely delighted and send my thanks and appreciation to everyone who has supported me so far.

Plans are coming together for a 10-mile walk on the 23rd September, the day after world CML day. We’ll start in Worcester and walk to Droitwich. As soon as we open sign-up, I’ll drop a message. Keep that date free!

Tickets are selling for the concert at the Cavern Club and we haven’t even announced any acts yet! More to come on that too. It’s on the 1st November and you can buy tickets now: http://bit.ly/CavernClubKris10.

The local media have been incredibly supportive, click the publication to open the story:

Kidderminster Shuttle
Worcester News
Express & Star

I’ve also been interviewed by my good friend Cavan Scott who is a number one best-selling author and comic writer for both adults and children. You can find the interview here: http://bit.ly/2o73ofl

If you can help me reach my £10,000 target through supporting any of the events, donating or getting involved, please contact me or visit www.justgiving.com/kris10.

To follow my story and to find out more about the fundraising, search online using the hashtag #Kris10.

Thank you. Kris

I’m celebrating a decade since diagnosis with £10,000 fundraising goal!

I was diagnosed with Chronic Myeloid Leukaemia (CML) in 2008, aged 32, after visiting my GP with symptoms such as night sweats and pain in my hip. A blood test went on to reveal a leukaemia diagnosis which had me asking the question, “Am I going to die?”

When you’re told you have a leukaemia, or a blood cancer, or some other terrible disease, you never forget what being told feels like. There’s a ringing in the ears, everything just drains out of you. You just feel like you’ve been punched, really hard, but you feel no pain.

Now ten years on, I’m a marketing expert, blood cancer charity trustee and a passionate campaigner working with fellow leukaemia patients across the world seeking access to treatment. I’m also a seasoned public speaker, I recently spoke at a training day for 40 West Midlands GPs to help them understand what a blood cancer diagnosis feels like from a patient perspective.

The diagnosis made a huge difference to my life. Clearly, I could do without it, but it has made me a better person, I’ve no doubt about that. It’s made me recognise the important things in life.

To celebrate ten years since diagnosis, I’ve set myself a challenge to raise £10,000 for Leukaemia Care, the Worcestershire-based national charity that I’m a trustee of. I am also donating 10 days of my time to help support the charity, from marketing support to holding live webinars for anyone affected by a blood cancer diagnosis.

One of my key events in this year of fundraising will include a gig which is being held at the Cavern Club in Liverpool on 1st November 2018. As a huge Beatles fan, I was delighted when the Cavern Club gifted the space to hold the fundraising event. Other fundraising ideas include a 10-mile walk and donating my birthday to the charity in lieu of presents.

Nicole Scully, fundraising manager for Leukaemia Care said, “Kris is a fantastic example of somebody who is living well with a blood cancer. Kris is using his own strength to support others who sadly may not be living as well as he is. His fundraising pledge is a huge boost to the charity and will enable us to train more GPs about the signs and symptoms of blood cancer, support haematology nurses and continue to fund our support services for patients. We’re really excited to see how Kris’ year pans out.”

Tickets for my charity gig in Liverpool are now available through the Cavern Club website http://bit.ly/CavernClubKris10.

To follow my story and to find out more about the fundraising, search online using the hashtag #Kris10, follow Leukaemia Care on social media or visit the JustGiving page: www.justgiving.com/fundraising/kris10.

The Girls – a musical comedy

Yesterday, Kelly (my wife) and I attended a special performance of The Girls at the Phoenix Theatre in London.

The Girls follows on from smash hit play and film Calendar Girls, the true story of a group of Yorkshire housewives who posed nude in order to raise funds to buy a settee for their local hospital, in memory of one of their husbands. To date, they have raised almost £5million for Bloodwise. This musical comedy shows life in their Yorkshire village, how it happened, the effect on husbands, sons and daughters, and how a group of ordinary ladies achieved something extraordinary.

Me with the amazing REAL Calendar Girls (2013)

The show has brought together the writing talents of Gary Barlow and Tim Firth; it originally opened at The Grand Theatre in Leeds and The Lowry Theatre, Salford. Now it’s in the West End until April.

We were kindly invited by the producers of the show and by Bloodwise, along with lots of other patients and many health care professionals. This was the first performance at The Phoenix and as we settled into our seats, we weren’t sure what to expect.

The show was a smash; great songs, as you would expect from Gary Barlow, and a fluid, creative set. All of the performance were strong and the time flew by. The incredibly familiar story was brought to life in a way the film and the previous production didn’t, it was all too easy to fall in love with these characters again. The show ended with a magnificent standing ovation from a packed theatre.

The trouble is that it’s an incredibly difficult watch. 24 hours later and I’m still completely and utterly emotionally drained. The scenarios and situations felt all-too-real and I’m not ashamed to say that I spent the majority of the performance with tears streaking down my face.

The subject of blood cancer and an ultimately tragic illness were dealt with respectfully and with great compassion and as a patient, I didn’t feel patronised at all.

My emotional connection wasn’t helped by the fact that I’ve spent time with the real Calendar Girls. At two Bloodwise Impact Days, I’ve been led astray by the girls and their husbands (the boys?) until the early hours. They are incredible company and the relationships I saw on stage were an uncanny reflection of people I’ve spent time with.

This show deserves to play packed houses for the entire run, it’s a wonderful night out. It’s a show where you’ll find real emotional attachment. The people are real…really, real. And the comedy is real, the laughter is real, the passion is real and the potential life-affirming outcome from a tragic illness are real. It’ll make you want to plant a sunflower and toast ‘Clarky’. Congratulations to all involved.

Huge thanks to Bloodwise (especially Andy), the UK’s specialist blood cancer charity, who hosted patients and really looked after us. Bloodwise will receive monies from the production.

www.thegirlsmusical.com
Bloodwise: The Girls

Speaking at the APPG on Blood Cancer (Westminster, London)

This week I was invited to the Houses of Parliament to speak at the inaugural meeting of the All Party Political Group (APPG) on Blood Cancer. It was a great honour.

I’m not sure it would be entirely fair to document the entire proceedings; the secretariat, Bloodwise, will be documenting the detail in due course. I can say that we heard from the Parliamentary Under Secretary of State for Community Health & Care, David Mowat MP and the meeting was chaired expertly by Henry Smith MP.

The ultimate aim of the APPG will be to conduct enquiries into blood cancer-related issues. I believe that the first enquiry will cover how well (or not so well) the national cancer strategy is working for blood cancer patients (given their specific needs). This would be a great place to start and I applaud the approach.

Kris talking at the APPG on Blood Cancer

Kris with the Leukaemia Care Team (Zach and Monica)

Kris and Ben

There were a number of people representing various blood cancer organisations and charities and I hope that we can all pull together, with our parliamentarian counterparts and make a real difference to the lives of blood cancer patients. I’ll keep you posted.

I’ve posted my speech below, it’s not every word but I’m sure that you’ll catch the gist.

All of my best wishes, Kris (Griffin)

SPEECH – Wednesday 18th January 2017, House of Commons

Thank you for inviting me along today. I feel very honoured to be in such distinguished company and to be able to provide the room a patient voice.

It’s been 10 years (next month) since my CML diagnosis.

As you can imagine I’ve got many stories to tell about my blood cancer…not all of them bad…

Whilst talking this speech over with a good friend, we discussed a number of things that have happened to me that I could share with you. Not necessarily all bad.

Three CML anecdotes: bat ears, sperm banking, grapefruit.

No, probably best to leave the funny stories well alone, get on with the more serious stuff.

So, I want to tell you about the lad who was helping me out cutting a hedge down in my garden. We had a conversation. I told him that I had leukaemia.
And as he ran down my drive he shouted back, “CAN I CATCH IT?”

The problem is, people just don’t get us. The trouble is that it’s not just about taking meds anymore.

My feeling is that with CML being a treatable disease (or controllable), our needs are very different to many other cancers. I don’t believe that the health sector really understands us. Not because they are uncaring, but because we have moved so fast and so far forward.

When our treatment goes well, our wellbeing needs to be looked after and managed. There is a psychological impact of having a cancer diagnosis. Some people manage this better than others. But, this is an invisible problem for us. As we start to treat other blood cancers in a similar way, these are issues that need addressing more and more. It’s why I constantly bang on about personalised treatment. A personalised approach does provide the best outcomes and the best quality of life. I’m sure we can all agree that this is the aim.

Because if we get it right, the economic impact is huge. Potentially you could have people who previously were unable to work, now able to work. 40% of them may not be receiving any treatment at all. 20% (and growing) may be taking generic drugs which are much cheaper.

We are trailblazers and I treat my disease like a superpower. It opens doors and allows me to help people, to ensure that they are represented, to provide a voice. I work everyday and am kept on my toes by an active 5-year-old.

Even though blood cancer is the fifth most common cancer, there are 250,000 people (and growing) living with it in the UK…it’s hard to define…too many types and generally nothing to cut out.

And whilst the treatment for CML…and some other forms of blood cancer are getting more straightforward and successful…we can be in danger of forgetting that there is a real person behind each diagnosis. We forget that people can react differently to news, information, approaches and misinformation.

When I told the members of the CML-UK Facebook group I was speaking today, many of the 2,000 members replied asking me to mention a variety of subjects. I’ll do my best to represent some of those views now:

GENERICS.
No consultation with patients. No formal information. But, imatinib patients are expected to simply switch tablets and accept what they are told…this after being told that patient power is a good thing. What about the months, sometimes years of getting to a good place only to be told to start again. No official reassurances. I’m still waiting to hear if you can go back to a drug that previously worked for you. MUST DO BETTER.

SUPPORT
The psychological scars run deep, as deep as any cancer patient. But, we are the ones with invisible problems, different needs. CML, in particular, is a disease, that doesn’t necessarily have to destroy your life. If the tablets go down well, carry on. I’ve not missed a day of work through CML since diagnosis. So, empower us. We can be your support network. Take a look at the Bloodwise Ambassador scheme and the CML-UK Facebook group for evidence of burgeoning, useful communities.

GENERAL AWARENESS
There are people in the medical profession who still don’t know enough about blood cancers. I know that Leukaemia Care is trying to address this. Just some basic awareness. I was diagnosed by accident, many blood cancers are. If my GP hadn’t been curious…I wouldn’t be here now. Which leads me to…
PERCEPTIONS
Many employers don’t get it. Many patients WANT to work and yet outdated, overly bureaucratic business practices stops them. How can you have cancer, you haven’t lost your hair? And many patients who are unable to work because of devastating side effects, cannot access the benefit system because CML is a “treatable” disease.

INSURANCE
There are some travel insurance policies that we can get. But not life cover. Why? Exclusions? They use the wrong data!
Many traditional cancer patients can get cover after being clear for a number of years. But us? No. Ongoing treatment. And no one wants to listen.

LIVING ON THE EDGE
No matter how many times you’ve gone through it, no matter how robust you are, no matter how long you’ve been undetectable. When you go and pick your bloods up, it still feels like you are rolling the dice. And that, every three months, every six months. In many cases, for a lifetime. It takes some getting your head around.

On one hand, we should congratulate ourselves, we’re getting our head around the science and as for CML, it feels like a winnable battle. But there are many types of blood cancers and we have to keep pushing hard on all fronts.

Blood cancer patients are the front line. In my lifetime I want to see most cancers treated in the same way that my cancer is treated (or better). Many of you have played a part in the journey so far and are certainly responsible for getting the right drugs and treatment to the right people at the right time.

Let’s make sure that these patients are empowered. Let’s not leave them to fight other battles on their own. Let’s fight for their employment rights, look after their well-being, consult them on changes, find insurance and keep breaking walls down.

I’m incredibly grateful that we now have an APPG on Blood Cancer, it has already brought together some fantastic people, here in this room. But, please, let’s keep patient needs central to the agenda.

It is serendipitous that, when my journey started, 10 years ago, after a long walk, Sir Ian Botham told me that I was going to be OK.

He was right. I feel more confident today than I was yesterday, passing the message along and telling my fellow blood cancer patients that it’ll be OK.

That’s what matters. Thank you.

Kris Griffin speaking at the APPG on Blood Cancer

Video: Taking blood

When I visited the hospital in October 2016 I decided to document my visit for the benefit of other Chronic Myeloid Leukaemia (CML) patients. The video does contain footage of blood being drawn.

I received my results early and my leukaemia continues to be undetectable. I hope that this video helps newly diagnosed patients or patients who have concerns about regular blood tests. Please contact me if you have any comments or questions.

Thanks for watching, Kris