Back to School!

 Yesterday, we were invited back to our old School, George Spencer, and we had a great morning seeing some friendly faces and talking to the Year 11s about Bone Cancer and next year's challenge!

We were invited to speak in a Year 11 Assembly which gave an update on how the year have done so far with charity work and thought it would be a perfect opportunity to bring in a charity that was a little closer to home rather than a national one.

To get the pupils engaged and to see how much they we aware of the cancer and even Caroline and Thomas, we asked them to put their hands up if they'd heard of cancer and then keep them up if they'd heard of bone cancer. We were surprised at the large portion of hands still raised! We then asked them to put their hands up if they'd noticed the trees outside by the school reception - 99% of hands went up but the majority dropped when we asked if they knew who they were for or if they knew who Thomas and Caroline were. To be able to get them to relate the trees to not only ex-pupils of the school, but their story was the best way to get them thinking and wanting them to get involved.

 

It was wonderful being back and listening to all of the various ideas being thrown around to help raise money and ideas for building up those miles so after years trying to get out of school, we can't wait to pay another visit!

 A message to George Spencer, staff and pupils:

" Thank you to everyone who welcomed us back yesterday after so long! It was so good to see a few familiar faces as well as teach you all a bit about bone cancer and how you can join us next year.

We had some lovely young ladies come up to us at the end offering to do some miles for us so we can't wait to see your photos and to hear how you're getting on! For those wanting to join them, just drop us an email with how many miles you've done and how, and maybe a 'selfie' so we can add this to the blog! Whether it's in the gym, on your bike, riding a horse or doing cross country or the dreaded bleep test, whether you're on your own or doing it as a team or class, be sure to get involved!

We'll be back in the New Year and will come along to any events you guys want to plan for us but in the mean time, follow us on Facebook and Twitter and keep spreading the word!

www.facebook.com/lukeandsarahs3000milechallenge

www.twitter.com/LC_SJ3000BCRT

lukeandsarahforbcrt@gmail.com "

#TBT: Bravery Awards

Our last #tbt blog showed Thomas and Caroline with their Head Teacher, Mr Mike Barker who nominated them for a Reach Out Bravery award - an award within the BBC Radio Nottingham and Nottingham Evening Post annual award ceremony. 

Here is another #tbt to the night of the awards... 

For the event, they had to choose someone who they would love to meet if they could pick anyone! Thomas chose a Forest Football Player, Jack Lester, while Caroline wanted anyone from Tracy Beaker and had the opportunity to meet Sharlene, who played Jenny!

Early Diagnosis to save life and limb

This week's Bone Cancer Awareness week is all about early diagnosis! Just 1 in 20 Doctors/Surgeons see a Bone Cancer case in their career.... 1 in 20! Everyone’s route to diagnosis is different but all primary bone cancer patients and people who have been affected share the same view – early diagnosis is crucial. Caroline and Thomas were both 'lucky' in that their diagnosis was made early, within days of their accidents happening however for the majority of patients, this isn't the case. Even though Caroline and Thomas still lost their battle, we had longer with them than most other families have.

Statistics show just 41% of bone cancer patients were sent for further investigation via a standard GP referral or through the urgent Two-Week Wait system (TWW) in 2005-10 and almost 1 in 4 (24%) were diagnosed after an emergency admission. This means they were more likely to require an amputation and had poorer survival outlook than those who were referred by their GP.

As this is one of the rarest forms of cancer, the main problem is GPs not knowing about Bone Cancer and therefore they are very quick to advise that a patient may have growing pains or sports injuries - giving them either pain killers or antibiotics. This is something that BCRT are trying to change and they have teamed up with the Royal College of GPs to devise an e-learning module to spot the symptoms of this rare and devastating cancer sooner.By taking just 30 minutes out of their day, doctors can learn new information which could help to save limbs and lives. 


Connor Donnelly, who lost his mum Sharon to adamantinoma in April this year, tells BCRT why early diagnosis is important to him and his family:

“Bone cancer caused my mum to not only lose her life at the age of 48 but for over two years as a family we had to watch her go through two operations and two amputations. This took away her ability to walk or be the full independent woman she was before. To watch this was hard but knowing there was no cure for her cancer meant we had to go through all of this and no happy ending – only unbearable heartbreak. I urge all doctors to take time to learn more about primary bone cancer symptoms. Maybe, just maybe, had my mum’s GP, consultant or surgeon taken this e-learning module she might still be here today." 


Joanne Todd, who was diagnosed with osteosarcoma and describes why early diagnosis is so important to her:

“Being told you have cancer is devastating for everyone but when you hear the words ‘bone cancer’ you are left with utter disbelief and terror.The knowledge and information is not widely available as with other cancer diagnoses. I felt alone and totally unsure as to what the future held for me. Early diagnosis is key. If a patient presents themselves with unexplained pain or lumps, then follow this up.
I was told the bony lump I had wasn’t sinister – my instinct and intuition told me differently. If I hadn’t sought a second opinion I would not be here now writing this message. I would urge everyone to let their GP know about this module – it gives them even more knowledge and understanding to diagnose and spot the early signs of bone cancer, giving the patient a far better chance of survival.”

You can help make your GP aware of Bone Cancer by downloading a leaflet with more information about it. If you have an upcoming Drs appointment, why not take the leaflet with you and just say "I am just wondering, have you ever had any cases of Bone Cancer?" and explain to them about Bone Cancer Awareness week and even what everyone is doing to raise money and awareness - it will only add a couple of minutes onto your appointment and who knows... you could be a limb and life saver! 

Download a leaflet here or email it to your local surgery to let them know about Bone Cancer Awareness Week: http://www.bcrt.org.uk/content/PRIMARY-BONE-CANCER-leaflet.pdf. 

All the information above can be found on the BCRT website and Facebook pages along with more stories from other people affected by Bone Cancer so be sure to check them out. 

The effects of losing a Sibling

When someone in the family dies, for a sibling, you're almost overlooked. Between us both, and speaking to other siblings who've lost a brother or sister, we've all said that when visitors came to the house shortly after losing a family member, it's always "how's your mum and dad holding up?" or "hope you're looking after your mum and dad". It's not "how're you?" or "how're you doing?". 

The worst question we get asked when we meet new people, which has happened many times since and will happen for the rest of our lives, is "do you have any brothers or sisters?" - "no" is admittedly an answer we've both used purely for the easiness! Sometimes it's easier to say you're an only child after losing a sibling rather than having to go into the details which could end up being a long story, awkward and/or upsetting - We've said "no" if we don't want people, who aren't going to be in our lives long enough to find out, to know and THAT'S OK.

Once we realised that our entire futures, even if unplanned, had changed dramatically, it quickly spirals and branches out to everything else that you don't think about at the time. It's not until the months or years after that you start thinking about the rest of your life without your brother and sister. When both Thomas and Caroline died, we were both left as an "only child" (Sarah now has a 4 year old brother and sister) but at the time, it's a scary thought...


Who's going to sneak into my room for a midnight feast? 
Who am I going to help get ready for prom? 
Who am I going to help learn to drive? 
Who will I be watching leave for Uni? 
Who's new boyfriend/girlfriend will I be giving the once over when they're brought home for the first time? 
Who am I going to go on random road trips with? 
Who am I going to go partying abroad with?
Who's engagement party will I help organise? 
Who's going to organise mine?
What about hen dos and stag dos? 
(Sarah's personal worst thought) Who's going to be my Maid of Honour/Bridesmaid/Best Man? 
Who's going to make me an Aunty/Uncle?
Who's going to be the Aunty/Uncle of my child? 
How, if I do, do I explain who their Aunty/Uncle should be or who that is on the photos around the house? 
Who will I go on a family holiday with? 
Who will I have future Christmas's with and take it in turns to have the family round? 
When I lose my parents, who is going to be there by my side? 

These are just a few of the questions that have been through both our minds over the last 7 or 8 years since losing Thomas and Caroline and it's something that people looking into your life won't think about. I bet this has got you thinking hasn't it now?

***** 

We recently found a blog by Dr Christina Hibbert about the "10 things everyone should know about siblings & grief" which really did make an interesting read - not just for siblings but for everyone! If you have another few minutes, be sure to have a read.

http://www.drchristinahibbert.com/dealing-with-grief/siblings-grief-10-things-everyone-should-know/

What you didn't know about Bone Cancer: The facts

Happy Bone cancer awareness week! This week we'll be blogging each day to teach you more about bone cancer and more abo why we are doing the 3000 mile challenge for BCRT! 

You keep hearing us talking about Bone Cancer, but there's a lot about the cancer that you probably don't know... 

The "did you know?" Stuff...

• There are a number of types of bone cancer; osteosarcoma, ewings sarcoma and chondrosarcoma. 
• It's mostly common in children/teenagers and the elderly 
• The main symptom is bone pain which may come and go at first then become more persistent 
• Although it can appear in any bone in the body, it's most common in the limbs 
• Around 400 people are diagnosed with Bone cancer a year in the UK (less than 100 are diagnosed with Osteosarcoma, the cancer Thomas and Caroline had... considering they were in the same school, pretty scary huh!)
• The survival rate is the only survival rate out of the most common cancers which hasn't increased in the last 3 decades 
• It's a common cancer in dogs - particularly Great Danes due to their height! 
• Only 1 in 20 Doctors see a bone cancer case in their career 

The important stuff...

What causes Bone Cancer? 

• The cause of bone cancer has still not been defined however it's been said that everyone has cells in our bodies containing a structure inside called the nucleus, which is protected from the rest of the cell. The nucleus make up the DNA which are the genes in your body. Some genes act as ‘brakes’ on the cell division process in order to stop cells dividing too quickly. If damage occurs to these genes (eg, how Caroline fell off a skateboard ramp and landed on her wrist or how Thomas hurt his shoulder play fighting), it can mean that the brakes fail. This allows cells to divide when they shouldn’t, and causes cells to live longer than they should so they can divide more times. This can lead to cancer.

What treatments are best for Bone Cancer? 

• Chemo is the first port of call for Bone cancer as radio therapy can damage the DNA cells which can go on to damage the genes as discussed above 

Tomorrow we'll make you really think about what happens in the years after losing a sibling and the secret worries we have for the rest of our lives. All the info above and much much more can be found on the Bone Cancer Research Trust website! 

Sarah & Caroline's Story

Warning - this is something that's probably going to be hard to read for anyone, particularly if affected by cancer or loss.

So even though Caroline and Thomas's stories are scaringly similar, I just wanted to tell you a little about Caroline and her time in hospital! 

*** 

In August of 2004, Caroline was just 9 years (I was 12) old when she was hit in the arm with a skateboard while sitting on a skateboard ramp and within just hours her arm had ballooned and she'd been taken into Nottingham A&E with what our parents though was just a broken bone. 

To this day, I don't know what was said when my parents were taken out of the room and into a meeting room.. All I knew was that some fancy Doctor had been called to come in at midnight after x-rays had been taken.It turned out it wasn't a break, it was osteosarcoma - bone cancer. It didn't take long, literally days, for Caroline to start treatment and for the Chemo to be given.

By December, they were positive the chemo was working and took her to Birmingham Hospital to have the bit of bone removed and any remaining tumour. After having an x-ray on arrival, Caroline was told that as she had a cold they couldn't operate and that she could come back in a few weeks. Just a couple of weeks later on boxing day 2004, we were in Professor Walker's office being told that she would have to have her arm amputated as the tumour hadn't shrunk enough to remove it. 

Just days later, the day before New Years eve, Caroine went into Surgery back at Birmingham and had her arm amputated... within less than 24 hours she was home celebrating in the New Year! 

Over the next 18 months, we repeatedly had the good news that the cancer had gone followed a few weeks/months later than it was back in various parts of her body - legs, spine or lungs. By August 2006, after being rocked by the loss of Thomas, our parents were told that options and time were running out. We were whisked away by another fantastic Charity, When You Wish Upon a Star, a Nottingham based charity that grants wishes for sick children, to Florida for 3 weeks where we visited all the theme and Disney parks and Caroline's wish of Swimming with Dolphins came true! 

We arrived home to more Chemo and now Radio therapy to try and prolong time as much as possible. This carried on right until April of 2007. Late April 2007.. what I'd imagine to be one of the worst days of my Mum and Dad's life. Being called into Professor Walker's office for a meeting was never going to bring good news. 4 weeks left. 

I had no idea what was going on, neither did Caroline. All we knew was that we'd been given 4 weeks off of School and treatment. It's amazing how much you can cram into 4 weeks when you know that's all you have.. trips to London, seeing as much family as possible, meeting Mcfly and Sugababes on the same night (more on that later!) and a big family holiday. 

What was the fourth week was spent in Wales with my Mum's family and spent on the beach playing. Thursday night came around and Caroline suddenly became tired and weak and was rushed to the nearest hospital. After a night there, she was taken to Nottingham in an ambulance.. blue lights flashing, sirens blaring out - how my Dad never got a speeding ticket trying to keep up from Wales to Nottingham behind an ambulance I'll never know. 

By 2.30am Saturday night/Sunday morning, she'd fallen asleep listening to Mcfly with me, Mum and Dad sat on her bed with her. 

It's crazy how quickly things can change.. one minute she's playing on the beach then getting ready and putting her make up on going out for a meal and then less than 72 hours later, she'd fallen asleep after her lung had collapsed. 

**** 

It's stories like mine and Luke's which need to be shared for it to hit home with other people just how hard it is being part of a family affected by Bone Cancer. A lot of people have no idea what it's like and therefore don't understand why me and Luke are so passionate about raising awareness and sharing our stories to get people involved to help raise awareness and funds. The more funds that are raised through people raising awareness, the less people will have to go through what we've been through - but we can't do it on our own, we need everyone!

#TBT: The day they made front page news

I'll never forget going into Tesco and buying literally every copy of the Nottingham Evening Post they had for all our family and friends. We knew that Caroline and Thomas had been interviewed, along with their Junior School Head Teacher, the wonderful Mr Mike Barker, but we had no idea that when we picked up the paper, they'd hit the headlines and make front page news after being nominated for a joint Reach Out Bravery Award!

The article was a 2 page article where our old Head Teacher explained why he had nominated them for a Reach Out Bravery award! This was also one of the first times that Nottingham had heard about the Caroline and Thomas and why being in the same school while having the same type of Bone Cancer was a rarity. 

The article also features comments from Caroline's consultant, Professor David Walker who looked after Caroline during her time in Queens Medical Centre in Nottingham! 

We'd be happy to send anyone the .jpeg to have a read as it's not the best quality on here. Just drop us an email - lukeandsarahforbcrt@gmail.com or Tweet/Facebook either of us :)

Happy Throw Back Thursday! 

Sarah x

@LC_SJ3000BCRT

@MsSarahJack

@_LukeClifford

www.facebook.com/lukeandsarahs3000milechallenge

Secret Mission!

Hi everyone - we're Luke and Sarah! 

So a few months ago we decided that we want to do something to raise both awareness and vital funds for Bone Cancer Research Trust in memory of Luke's Brother, Thomas, and Sarah's Sister, Caroline who both died of Osteosarcoma - a very rare form of bone cancer.

It's no secret that in the last year or so we've been in close contact with the Bone Cancer Research Trust  and today, we travelled to Leeds to finally meet the team behind the charity at the BCRT Head Office. It's been a brilliant day and even educational.

But the main reason we went was to announce our final plans on how we're going to challenge ourselves while teaching others about bone cancer and why it's so important that we raise funds for new drug trials. 

With your help, we are going to cover 3000, yes, THREE THOUSAND, miles over the space of a year starting on January 1st 2015. Whether this be running, swimming, cycing, dog walking, canooing or whoever else knows what, we are going to be covering this huge milage for TEAM BONES! 

We would love to get you all involved; friends, family and colleagues to help us reach our target and raise our aim of £1 per mile. Over the next year we'll be organising group get togethers where you can get your bike out or your running shoes on to join us! 

In 2015 we will be blogging and vlogging (video blogging for anyone who doesn't know) our way through the year and set up several ways for you to keep up to date with our progress and for any plans where you can join us. Even if you're doing your own walk and fancy donating your miles, just drop us an email with a mini blog feature! 

We still have 3 months before the start date but for now though, be sure to follow us on the below pages and wish us luck! 

http://lukeandsarahs3000milechallenge.blogspot.com

www.youtube.com/sarahandlukeforbcrt

www.twitter.com/LC_SJ3000BCRT

lukeandsarahforbcrt@gmail.com