#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!