Guest Post - Elizabeth Bailey

Another blog post by one of my wonderful fellow ambassadors, and a real inspiration of mine, for you to enjoy today. Elizabeth is a wonderful lady, full of passion, intelligence and a real zest for life. I am honoured that she has allowed me to share some of her thoughts with you.

Elizabeth Bailey is Cancer Research UK’s Campaigns Ambassador for Luton South and on the Committee of CR UK Luton Relay for Life. Following a brush with breast cancer, she recently gave up a twenty-year Civil Service career and now combines being a postgraduate student with working in her local Public Health Team, and being a mum to two young daughters.  Elizabeth writes on cancer, and being a volunteer:

Over the past week, a family friend has been faced with the possibility that the breast cancer, for which she was successfully treated thirteen years ago, had returned, this time in her bones – secondaries, for which we know there is no cure.

The news stopped me in my tracks. Over time, I had come to the conclusion that the cancer for which I myself was treated three years ago was one of the best things that ever happened to me.  I’ll explain further why thought this, but for now, I’m having to consider that the life enhancing things which have come my way since then may have done so at some considerable cost – and only time will tell.

Early in 2010, I found myself sitting in a rain-drenched hospital car park howling with animal rage because I thought I would not see my little daughters grow up. But chemo, much surgery and radiotherapy have since been and gone.  It is now 2013, and the cancer, fingers crossed, is also gone.  But not the rage.  Cancer, in all its unpleasant incarnations, is now my chosen enemy. 

Everyone should have an enemy, don’t they say – it gives you purpose and direction, something to fight against. It did me. I now devote a good third of my time to helping dismantle this enemy, picking it apart bit by bit, with money, science, politics and the best efforts I can make to weaken it. I hope that even if it is still strong enough to take my friends, or even me, it will be a shadow by the time my daughters have to think about it. It’s in my sightline, and I’m proud to be called obsessive. One of my fellow CRUK Ambassadors, Jan Sheward, once vividly described to me her feeling of controlled rage about cancer.  Right on. I’m cool, calm, and armed with lots of facts and figures. Whoever wants to take me on, good luck.

Don’t misunderstand me - I respect my enemy, and it has given me things.  A whole host of new friends, for one.  Some really exciting, career-enhancing volunteering opportunities for another.  The courage to make a major change. Oh, and something to study for my PhD.  I really can’t complain about all of that. 

But there won’t be any gratitude. On Tuesday last week I went to the House of Commons with my fellow Ambassador Gower Tan, telling Peers and MPs why they should be playing their part in the further crowding-out of tobacco products by supporting an amendment to the Children and Families Bill.  This would enforce standardised cigarette packaging in shops where children are able to see those products. Yes, that’s right. Let’s not mess about here, the moral argument is won.  Peer-reviewed evidence proves that pack marketing attracts children. So we need to stop a toxic, addictive product, and the number one preventable cause of cancer, being dressed up in a completely misleading way. The game is over.  It’s now about taking timely action to save real people’s lives, and I will be making this very clear indeed.

We will win on this point.  It is not matter of if, but of when.  Funnily enough, until recently I used to rail against people describing cancer treatment as a ‘battle’, a ‘fight’ or a ‘war’. I had sad images of my old Dad, too weak to fight. But guess what - I’m getting over myself. If it helps some people to think like that, so be it.  Besides which, I think you can see I’m a bit of a street fighter myself - and I am not putting my coat back on just yet, not until I’m finished.

Remembering Bengu Shail - Greek, Turkish and Cypriot Bone Marrow Donors Needed

Bengu Shail was a fellow Cancer Campaigns Ambassador for Cancer Research UK. She sadly died at the age of thirty five earlier this year after a long batter with cancer. Unfortunately I didn’t get to know her very well but she has still impacted my life in a positive way and I wanted to use a blog post to pay tribute to her and help pass on the message she worked so hard to raise awareness of.

Bengu volunteered for several charities including Macmillan and CRUK. She also fundraised, campaigned and advocated. A lot of this was done from her hospital bed or whilst she was undergoing treatments. I am told she had a very positive outlook on life and was always very selfless.

Bengu was diagnosed with ALL (acute lymphoblastic leukaemia in September 2009. She went into remission after two years of intensive treatment and began working for Macmillan as a Case Studies Officer, helping other cancer patients. Sadly she was informed in October 2012 that the disease had returned and Bengu’s only hope was a bone marrow transplant.

Like my family, Bengu was from Cyprus (North Cyprus to be precise). Unfortunately Anthony Nolan were unable to find a matching donor on their UK register. Patients are more likely to find a match if they have a similar ethnic background and sadly the Greek, Turkish and Cypriot community are hugely underrepresented on the register in the UK.

Bengu herself once said “All of us want a cure for cancer. In my case, the cure is no in the hands of scientists, it is in the hands of my community – selfless people who are willing to spare a few hours of their time to give someone like me a chance to live.”

As a fellow Cypriot I think the best way for me to honour this incredible lady is to look into ways of becoming a bone marrow donor and encourage people from the same background as me to do the same. The Greek and Cypriot communities are famous for their hospitality and their sense of community. I for one have always been hugely proud to be a Greek Cypriot and I feel if we can be helping save each others lives by donating some bone marrow then we should be doing this!!! So if you’re one of my fellow Cypriots – please do check out Anthony Nolan and see how you can go about donating some bone marrow - you could save the life of a fellow Cypriot!

Bengu sounds like an incredible woman and I’m so sad that I didn’t get an opportunity to get to know her. I’m also very sad that this inspiring young lady was taken in the prime of her life. I hope others can be saved by her important message and her memory lives on with an increase in bone marrow donors from the Greek, Turkish and Cypriot communities.

To look into becoming a bone marrow donor please visit http://www.anthonynolan.org/

To donate in memory of Bengu please visit http://www.justgiving.com/remember/78465/Bengu%20-Shail

Georgie: Two Years On

Greetings from Cyprus!

My birthday is now hugely bittersweet because it also marks the day Georgie died. Tomorrow will be two years since his death and I struggle massively with the fact that I get another year older on the day he stopped living. Everyone does their best to make the day nice but I was very close to Georgie and I can't help but think of him, as I do everyday. 

I loved Georgie very much. I still talk about him lots and I think about him all the time. He is still very much a part of my everyday life with this blog and my voluntary work but there is definately a hole in my world without him. I don't think that will ever change, he is simply irreplaceable. It's hard to find the right words so I will keep this blog post nice and short. I just wanted to publicly acknowledge what will be a very bittersweet day for me.

Love you Georgie. Missing you more and more everyday xxx

Blog Post 200: International Rare Disease Day 2013

Today is International Rare Disease day. I am going to use this day to raise more awareness for  rare conditions that have affected people I know and care about. Some of this information will have been covered in this blog before but it’s always good to go over things and refresh memories as well as raising awareness for newer followers of this blog!

On a personal note, this is my 200th post on this blog!!! Thank you so much to everyone who reads it and to everyone that provides me with encouragement, support and great post ideas. I would also like to use this post to publicly thank David Collins for his unwavering support and guidance. David is a very humble man but he is someone I admire greatly and look up to. Thank you David x

George Pantziarka and Li Fraumeni Syndrome

Of course I have to mention my beautiful Georgie. He was a Li Fraumeni sufferer and I want to raise awareness of this condition in the hope that it saves others from a similar fate.

The TP53 Gene:

The TP53 gene acts as a tumour suppressor. It creates the p53 protein which kills cancerous cells. When the TP53 gene fails, the body loses one of its key ways of stopping damaged cells developing into cancer. Some people with cancer find their TP53 gene is damaged within the tumours but is functioning normally throughout the rest of their body. However, some people are born with a damaged TP53 gene. This is usually an inherited problem and it passed down from parent to child. These people have a very very very high risk of developing cancer.

Li Fraumeni Syndrome:

LFS is one of the most serious kinds of inherited TP53 disorders. It is a rare disorder that greatly increases the sufferers risk of developing several kinds of cancer especially children and young adults. The most common cancers associated with LFS are: breast cancer, osteosarcoma (a type of bone cancer) and soft tissue sarcomas.

Diagnosing Li Fraumeni Syndome:

LFS is rare so not much is known about it. Genetic testing and genetic counselling are used to confirm whether or not someone is suffering from LFS. If it is confirmed then this person will need to be regularly screened to check for cancer. The sad fact is, people with LFS are very likely to develop cancer so it is hugely important for them to be screened as cancer is easier to treat the earlier it is diagnosed.

Please look into genetic testing if you meet the following criteria:

An individual with:

·         Adrenocortical cancer at any age

·         Choroid plexus cancer at any age

·         Rhabdomyosarcoma below 5 years

·         Breast cancer below 30 years old (if eligible for BRCA1/2 testing, this should be performed first)

·         Two or more primary cancers of the following: sarcoma, breast, brain, adrenocortical or any childhood cancer; at least one below 46 years old

Two relatives affected with:

·         Sarcoma, breast, brain, adrenocortical or any childhood cancer; one relative below 36 yrs and one relative below 46 years old

Three relatives affected with:

·         Sarcoma below 45 years old and

·         any cancer below 45 years old and

·         any cancer below 45 years old or sarcoma at any age

Georgie and Li Fraumeni Syndrome:

Georgie’s mum died when Georgie was one years old. She was 29 years old and had ovarian cancer. Georgie was then diagnosed with cancer a few months later on his second birthday. At the time it was written off as a horrific coincidence by doctors. It wasn’t until Georgie was diagnosed with cancer for the third time at the age of fifteen that we discovered he had Li Fraumeni Syndrome which had probably been inherited from his mother.

It took a very long time for Georgie to be diagnosed with the osteosarcoma that eventually killed him. At first he was told it was a dental problem. Had we have known he had LFS; he could have been diagnosed much quicker as alarm bells would have been ringing. We will never know if this could have saved his life. We live with the “what if?”

LFS and other TP53 disorders are rare and not much is known about them. There is little awareness about them amongst the general public and even the medical profession. There aren’t any dedicated support groups or charities, no information resources and no registry of the sufferers. There isn’t a community for the sufferers which can make it very isolating, lonely and terrifying for the sufferers and their families.

As I have mentioned before, my uncle has set up the George Pantziarka TP53 Trust to honour Georgie’s memory by providing support to families and individuals, to provide information on TP53 disorders including LFS and to get research funded to look into the condition.The forum on the website which is used to bring together people affected by the condition. Please do take a look and feel free to ask any questions – my uncle is always happy to answer!

For more information on TP53 and Li Fraumeni Syndrome, please visit www.tp53.co.uk

Dawn Green and Pesudomyxoma Peritonei

I have mentioned my beautiful fellow CRUK Ambassador and friend Dawn Green on this blog before. She is literally Wonderwoman and I am in awe of her.

In 2008 Dawn was diagnosed with Pseudomyxoma Peritonei. 

Pseudomyxoma Peritonei is a very rare type of cancer that usually begins in your appendix as a small growth, called a polyp. Or, more rarely, it can start in other parts of the bowel, the ovary or bladder. This polyp eventually spreads through the wall of your appendix and spreads cancerous cells to the lining of the abdominal cavity (the peritoneum). These cancerous cells produce mucus, which collects in the abdomen as a jelly like fluid called mucin.

Dawn was given just three months to live and the cancer was so rare that her doctors didn’t know much about it at all. Whilst fighting the disease Dawn noticed a distinct lack of emotional support for people fighting this form of cancer. 

Dawn decided to set up a charity to help others in her situation. Pseudomyxoma Survivor aims to provide emotional support for anyone dealing with this type of cancer and to prevent anyone feeling alone or isolated during their fight against the disease.

The charity fundraises and raises the profile of PMP whilst also funding research into the disease. Dawn is an incredible patient advocate for all survivors, and this results in increased awareness and higher survival rates worldwide.

If you would like to know more about this type of Cancer or Dawn’s charity then please check out her website, I will post the link below. If you are interested in getting involved then I’m sure she’d be happy to hear from you!

A cancer diagnosis is terrifying, especially when it’s a very rare cancer such as this one. More needs to be done to understand these rarer types of the disease so cure’s can be found and people can be saved. Dawn recently found out that her cancer has returned but thankfully it is slow growing. I wish her so much luck and I am sending so many positive thoughts and lots of love her way. I think Dawn is incredible and the World needs people like her. She is a tough cookie and she won’t let cancer beat her. We’re all with you every step of the way beautiful Dawn.

http://www.pseudomyxomasurvivor.co.uk/

xxx

My Beautiful Cousin Georgie xx

World Cancer Day 2013

Today is World Cancer Day 2013 and this year is focusing on target five of the World Cancer Declaration: "Dispel damaging myths and misconceptions about cancer".

The purpose of World Cancer Day 2013 is to raise a collective voice to try and improve knowledge about cancer as well as dismissing misconceptions surrounding the disease.

I thought I would mark the day by summarizing a few "key facts" about the disease. 

What Causes Cancer?

Genes tell our cells what to do and are encoded in our DNA. Cancer is caused by damaged or faulty genes. Anything that can damage our DNA can increase the risk of cancer, although several genes within the same cell will need to be damaged for cancer to occur.

Most cancers develop when DNA damage accumulates over a lifetime, which is why cancer affects so many older people. Some people are born with a specific gene fault, which they inherit from their parents, and this can also lead to a heightened risk of the disease developing. Everyone has subtle differences in their genes which can increase or decrease their chances of developing cancer.

However, cancer isn't just caused by our genes and our lifestyles play a huge role in increasing and decreasing our chances of developing certain cancer types. Whilst no one can change their genetic make up, we can take important steps with our lifestyles to try and reduce our chances of developing the disease.

Lifestyle Choices To Consider:
Age - The single biggest risk factor for cancer. As you get older, your chances of developing cancer increase. Nearly 2/3 cancer cases in the UK are occurring in people over sixty five. Obviously this is because as we age, we accumulate more cancer causing faults in our DNA. People live much long nowadays which means our chances of picking up these cancer causing faults are increasing.

Lifestyle - Nearly half of all cancers can be prevented by changes to lifestyle. There are many ways we can try and lessen our risk of cancer:
 * Giving Up Smoking
* Being responsible in the sun
* Eating a balanced diet
* Limiting alcohol
* Regular exercise
* Having a healthy body weight

Carcinogens - This literally translates as "something that causes cancer" They can damage DNA and cause damage to important genes which will lead to cancer. Examples of common carcinogens are:
* Tobacco
* Car exhaust fumes
* Air pollution
* The sun
* Radiation (both natural and man made) for example X-Rays
* Asbestos
Please don't think carcinogens are the only cause of cancer, in most cases they are a contributing factor and are joined by a number of other factors.

Inherited Fault Genes - Obviously this is the factor I am most familiar with. Some people (like Georgie) are born with a gene containing a fault. This doesn't guarantee them a battle with cancer but it does mean fewer things need to go wrong with their DNA for the disease to develop. They are more vulnerable to the disease. They have a higher risk. People with a strong family history of cancer can be genetically tested. It is incredibly important. Please visit www.tp53.co.uk for more information about this. As a family we really do believe more people need to be genetically tested and are trying to make it happen. 

Viruses - There are some viruses that can be linked to some types of cancer. Don't confuse a virus with an infection - cancer is not contagious - you cannot catch it from someone else. some examples of these viruses are:
* Human Papilloma Virus (HPV) is a major cause of cervical cancer
* Hepatitis B and C can cause primary liver cancer
* Human Immunodeficiency Virus (HIV) has been linked to several cancers. This is because it weakens the immune system.

Signs and Symptoms of Cancer:

There are some warning signs that should always be checked out by a medical professional. I am going to highlight them below. Please note, these symptoms do not guarantee you have cancer but they do need to be investigated. Do not think they are nothing to bother your GP about and do not worry about being embarrassed – your doctor will have seen and heard of a lot worse trust me!

Signs of cancer for both men and women:
* Usual lump or swelling anywhere on your body - Men should pay particular attention to any lumps in their testicles and women should pay particular attention to any breast lumps. Everyone should watch out for lumps on your neck, armpit, abdomen, groin or chest area. The best time to have a check is probably when having a bath or shower. Have a good feel and know how your body feels so if any lumps do appear you can detect them easily.

* A mole that has changed shape, size or colour - most moles are harmless. However be aware of them because if a new mole appears or one changes colour, shape or size then it will need to be checked. If any mole begins or ooze, bleed or become crusty then please make an appointment with your GP ASAP.

* A sore that hasn't healed after several weeks - our skin is usually able to repair itself easily (within a week or so) If a spot, wart or sore isn't able to heal itself after three weeks then please go to your doctor.

* An ulcer in your mouth or on your tongue that has been there more then three weeks - most people get mouth ulcers when they are feeling run down. Usually they are nothing to worry about. Usually the lining of your mouth will renew itself every two weeks so an ulcer won't last much longer then that. However is an ulcer does last long then three weeks please visit your doctor or dentist.

* A cough or croaky voice that lasts longer then three weeks - these are symptoms of a cold. Usually they disappear after a week or so and are not signs of anything serious. But if they do last for longer then three weeks or if they get persistently worse then please do go to your doctor. ESPECIALLY if you are a smoker or have been a smoker.

* Persistent difficulty swallowing - Lots of medical conditions can affect your ability to swallow. If you are having difficulty and it lasts longer then a week or so then you should go to your doctor.

* Indigestion - There are lots of foods, especially fatty or spicy ones that can make you feel uncomfortable after eating them. If this is happening to you a lot or is really painful then it should be checked out.

* Blood in your urine - This should ALWAYS be reported to your doctor. It might not mean cancer but it should always be looked at.

* Problems passing urine - It is common for men to have difficulty passing urine as they get older. You may need to pee more often then you used to and it can sometimes be painful. Usually it is caused by a common condition causing your prostate to enlarge. It it not often cancer but if you are having trouble please visit a doctor. Most women experiencing problems with urine are suffering from an infection but if you need to pass urine more urgently then normal or are in pain whilst doing so, please get yourself checked out.

* Blood in your bowel movements - This is usually caused by piles which is caused by straining when you are going to the toilet. It can also be a sign of cancer so please stay vigilant.

* A change in your bowel movements that lasts longer then six weeks (diarrhoea) - this is usually caused by stomach bugs or food poisoning. If it lasts longer then a few weeks please get yourself to the doctors.

* Unexpected weight loss - It is normal for your weight to fluctuate slightly. However if you are not on a diet but are losing lots of weight please get a check up.

* Heavy night sweats - these are usually brought on by infections and some types of medications. They are also common in women going through the menopause. They can also be caused by some cancers so please take care if you are experiencing them regularly.

* Unexplained pain or ache that lasts longer then four weeks - Pain is our bodies telling us something is not right. Take notice of any pain and if it is persistent or getting worse then go see your doctor as soon as you can.

* Coughing up blood - ALWAYS go to see your doctor as soon as this happens.

Signs of cancer in women specifically:
* An usual change in your breast - lumps are not the only sign of breast cancer. Changes to your breast's appearance, shape or feel are also signs as are changes to the texture of the skin, any redness or changes to your nipples. Pain in your breast is also a sign. If you experience any of these, don't panic but visit your GP ASAP.

* Bleeding from the vagina after the menopause or in between periods - Spotting (bleeding between periods) is common for females taking the contraceptive pill. However if you are bleeding during or after sex, between periods or after going through the menopause then it should be check out straight away.

* Persistent bloating - Bloating is the blight of lots of women's lives. If it happens persistently please have a check up.

Some of these symptoms may seem embarrassing or silly. Don't ever feel embarrassed to see your doctor - they have seen it all and do not judge. Don't ever feel like you're bothering your doctor or wasting a time slot - if you have a concern or symptom, they are there to listen, to check and to reassure. If you are worried or think you may need to see a doctor then please don't deliberate, make the appointment as soon as you can. Early diagnosis saves lives. It also puts your mind at rest if nothing is actually wrong with you. Don’t be too scared to visit your GP. Remember, most of the time it will be absolutely nothing to worry about. It is ALWAYS best to get seen as soon as possible because it is always best to catch something as early as possible. If you are really nervous then take someone you trust with you.

Knowing Your Body

I have said this time and time again but knowing what is “normal” for you and your body is massively important. Knowing what is normal makes it easier to know when something isn’t quite right. It makes it easier to know when a consistent change is occurring and it will hopefully lead to you seeking medical advice quicker. Examples of getting to know your body include:

MEN – check your testicles at least once a month. Get to know how they feel; their size, their shape etc…..

LADIES – Check your breasts once a month to get to know what is “normal” for you and to check for any new and unexpected lumps, bumps and changes

EVERYONE - It may sound crude, but get to know your toilet habits. Know what is normal for you. Do you go twice a day or twice a week for example?

REMEMBER IF A CHANGE LASTS MORE THEN THREE WEEKS – GET TO YOUR GP!!!!

Some Positive Facts About The Fight Against Cancer:

I want to end this post by highlighting some positive statistics about the progress being made against cancer. We are making huge strides and more and more people are surviving every year. Cures are within our grasp.

*More then 9/10 men with testicular cancer survive and are cured of the disease.

*More than ¾ of children are surviving cancer compared to ¼ surviving back in the 1960’s.

*The three most common cancers in the UK are breast, bowel and lung cancer and they have all seen their death rates drop to their lowest level in forty years.

*The number of deaths from cancer are continuously dropping

*The number of people surviving cancers such as prostate and skin have dramatically improved

*The amount of people surviving more then ten years after a cancer diagnosis has DOUBLED over the past three decades

*The number of people surviving more then five years after a cancer diagnosis is now HALF of all cancer patients

*For cancers with low overall survival rates, early diagnosis does still mean chances of beating the disease are higher.

For information on specific lifestyle choices, specific cancer types, cancer charities and plenty more factual information about issues surrounding cancer, please have a look at this page and find the post that interests you.

http://pennysophia.blogspot.co.uk/p/information-posts.html

Losing six relatives to cancer has been horrific and I remain determined to work hard and play a role in defeating cancer. I strongly believe cures will start to be found during my lifetime and I look forward to that day.

On World Cancer Day I send my love to everyone fighting cancer across the world right now, and their loved ones too. I raise my glass to all those that have been lost, especially Georgie, Auntie Eleni, Dada Sotiris, Nouna Gina, Yiayia Alexandra and Buppou Peter.

xxx

Happy Birthday Auntie Eleni

I was speaking to my dad earlier and he pointed out that today should be my auntie Eleni's 44th birthday. 

She died at a very young age so it's hard for me to imagine her as a forty something. I like to think she'd be happily married and she would have some children who would have been my cousins and friends. She was a hairdresser so I like to picture her with her own salon.

I have my aunts old bus pass at home and it still has her last travelcard inside dated 1998. In front of that is a photo of myself, my sister Nikki and my cousin Alex. It makes me cry everytime I open it because it just shows what an incredible aunt she was. 

The saying goes that only an auntie can love you like a mother, keep secrets like a sister and share love like a friend. This is true. My auntie Eleni was devoted to get nieces and nephews. 

As always I find myself wishing I could spend the day with my dad, a man who has to bear the loss of his little sister every day. 

I am lucky enough to have inherited my aunt's curly hair and I have exactly the same laugh as her so she is always a part of me.

Miss you everyday Aunty Eleni,  Happy Birthday xxx

A Tribute to Alice Pyne

I usually keep my emotions regarding cancer and death under control. After losing six relatives, I have become quite skilled at remaining calm whilst discussing the subject. I don’t cry very much about my relatives, although I do think about them everyday. Doing this blog and the charity work makes cancer seem less scary, although I do hate it with a passion.

However, on Saturday night, whilst scrolling through my Twitter feed, I found it very hard to control my emotions when reading about the tragic and untimely death of Alice Pyne. I never met Alice but her death really hit me hard and was a stark reminder of how cruel this damn disease is and how many amazing people it has taken from the world. I wanted to do a blog post in tribute to this amazing young girl who did so much good when suffering from something so terrible.

You may have already heard of Alice. She was diagnosed with Non-Hodgkins Lymphoma five years ago and sadly was told it was terminal. The incredibly brave young girl created her “bucket list” which was a list of all the things she wanted to do before she died. Now we live in a materialistic world and many of us dream of expensive holidays, expensive clothes and flashy cars. Not Alice, her list was humble and all about spending time doing amazing things with the people she loved. This was her list

* DONE - To go whale watching

* DONE - Visit Cadbury World

* DONE - To go to my school leaver’s prom

* DONE - To stay in the Chocolate room at Alton Towers

* DONE - To swim with sharks

* DONE ‘ish - To go to Kenya (got to go to Kent-ya)!

* DONE - To enter Mabel in a Labrador show

* DONE - Photo shoot with Milly, Clarissa, Sammie and Megs

* DONE - To have a private cinema party for me and my BFFs

* DONE - To design a Emma Bridgewater Mug to sell for charity

* DONE- To stay in a caravan

* DONE - To have a purple Apple iPad

* DONE - To meet Take That

* DONE - To have a nice picture taken with Mabel

* DONE - To have my hair done

* DONE - To have a back massage

Alice won a Pride of Britain award for her dedication to her campaign to get people to sign up to be bone marrow donors. FORTY THOUSAND people have signed up to the donor register directly because of Alice and her amazing efforts. That is an absolutely incredible legacy for a seventeen year old girl to leave behind. I’m hoping many more people will sign up in her memory and I have requested information from Anthony Nolan this morning to discover if I can donate myself because beautiful Alice’s story has touched me so much.

Alice leaves behind her devoted parents and her little sister Milly and my thoughts are with them at this horrific time. I hope they can take comfort from the fact that Alice made such a huge and significant mark on the world during her short life and that hopefully all these donors that have signed up because of her will help other children survive this horrific disease.

I think Alice was an amazing young girl, I can only hope to match her achievements in life. She was a role model to all and I sincerely hope she is at peace and free from pain now. If there is a heaven, I like to think Georgie has met her at the gates to show her around and look after her. I have an image in my head that all these beautiful and amazing people that have been stolen from us are all friends together somewhere safe and happy, awaiting the people they love.

RIP Alice – what a legacy you have left behind. xxx

For more information on Alice please visit her blog -  http://alicepyne.blogspot.co.uk/

For more information on Anthony Nolan and becoming a bone marrow donor – please visit http://www.anthonynolan.org/

xxx

Childhood Cancer Awareness Month

December = Childhood Cancer Awareness Month in the UK. I don’t think I need to mention why this cause is so close to my heart but I do feel it is important to get the facts and figures out there for people to see. So here are some facts about childhood cancer for you:

The cancers seen in children are usually very different to those seen in adults and “childhood” refers to any child aged between birth and fourteen years old.

There are twelve main types of childhood cancer:

*Leukaemia

*Soft Tissue Sarcomas

*Kidney Tumours

*Brain and Central Nervous System (CNS)

*Bone Tumours (Like the one Georgie had)

*Carcinomas and Melanomas

*Retinoblastomas

*Gonadal and Germ Cell Tumours

*Liver Tumours

*Sympathetic Nervous System Tumours

*Other and Unspecified Tumours

Childhood cancer is quite rare and makes up 5% of all cancers. Around 1,600 children in the UK are diagnosed with cancer every year, which roughly works out at thirty one children per week. Around one in every five hundred children in the UK will be diagnosed with cancer.

The UK’s childhood cancer rates are amongst the lowest in Europe, with Northen Europe having the highest incidence rate.

Leukeamia is the most common childhood cancer. Two thirds of all childhood cancers are  leukeamia, brain and CNS tumours and lymphomas.

Surviving Childhood Cancer:

More children then ever are surviving cancer. The survival rate has doubled since the 1960’s and at least 5,600 MORE children now survive for more then five years after diagnosis.

Around 33,000 people in the UK have survived a type of childhood cancer and almost three quarters of children with cancer can now be cured of the disease.

For every ten childhood cancer sufferers – eight will now survive for more then five years after their diagnosis:

*Nearly all children diagnosed with retinoblastoma are cured.

*Survival rates for Hepatoblastoma have doubled since the 1960’s.

*Around six out of ten children diagnosed with neuroblastoma are cured.

*Eight out of ten children with kidney cancer survive the disease.

*Rhabdomyosarcoma survival rates have doubled since the 1970’s.

Childhood cancer deaths:

Cancer is the UK’s leading cause of death (from disease) in children aged up to fourteen. A fifth of all childhood deaths are down to cancer.

Brain and CNS tumours are the most common fatal type of childhood cancer.

Around two hundred and fifty children die from cancer every year in the UK.

Childhood cancer death rates have halved since the 1960’s.

Causes of Childhood Cancer:

We don’t know much about what causes childhood cancers but there are several things we do know:

*Rare genetic syndromes such as Li-Fraumeni Syndrome (what Georgie had) can greatly increase a child’s risk of developing cancer.

*Children with Down ’s syndrome have a greater risk of developing leukaemia.

*2/5 retinoblastomas are linked to a faulty gene that has been inherited.

*Children that have had radiotherapy or chemotherapy in the past are at greater risk of developing a second cancer (As Georgie did)

Blog Posts About Childhood Cancer:

Georgie Pantziarka – http://pennysophia.blogspot.co.uk/2011/10/georgie-pantziarka-xx.html

Mitchell Huth – http://pennysophia.blogspot.co.uk/2012/07/mitchell-huth.html

Harry Moseley - http://pennysophia.blogspot.co.uk/2011/12/childhood-cancer-awareness-month.html

Little Star Awards - http://pennysophia.blogspot.co.uk/2011/11/twinkle-twinkle-little-star.html

Retinoblastoma - http://pennysophia.blogspot.co.uk/2012/01/katy-bishop-petition-to-publish-signs.html

Joss Searchlight - http://pennysophia.blogspot.co.uk/2012/02/joss-searchlight.html

Ellie’s Fund - http://pennysophia.blogspot.co.uk/2012/02/ellies-fund.html

Li Fraumeni Syndrome - http://pennysophia.blogspot.co.uk/2012/06/blog-post-100-tp53-and-li-fraumeni.html

Georgie Hillman - http://pennysophia.blogspot.co.uk/2012/11/georgia-hillman-little-star.html

Neuroblastoma - http://pennysophia.blogspot.co.uk/2012/07/cancer-types-neuroblastoma-in-children.html

CLIC Sargent - http://pennysophia.blogspot.co.uk/2012/09/clic-sargent.html

The George Pantziarka Especially For You Fund - http://pennysophia.blogspot.co.uk/2012/10/the-george-pantziarka-especially-for.html

Having watched a loved one fight childhood cancer, my heart breaks for every family going through the same thing. Sending lots of love to all the incredible children out there fighting cancer. 

xxx

Raising Awareness of Bowel Cancer

As mentioned in the post below, today marks 13 years since my aunt passed away. She was yet to reach her thirtieth birthday when she died. She died after being diagnosed with bowel cancer (colon cancer to be precise). My uncle/Godfather also passed away in his very early thirties after battling the same type of cancer.

I get it; talking about your bowels and your poop can be embarrassing. It can also save your life. My aunt was diagnosed too late and she died pretty soon after diagnosis. We live with a constant what if: “if she had been diagnosed sooner, would she still be here today?”

My dad lost a brother and a sister to bowel cancer. As an adult fully aware of what has happened to our family, I can now fully appreciate why my dad forced me to each Bran Flakes for breakfast as a child (I do eat it now as well for anyone wondering!). Taking care of your bowels and being aware of what is “normal” for you is hugely important, especially for a family like mine. I hope my dad won't mind me saying this publicly, but he had regular colonoscopies to check himself and to make sure he is OK  When I am a little older, I will be doing the same. They may be unpleasant but they are a hell of a lot better then a battle with cancer. With a family history like ours, you really can't be too careful.

Bowel cancer can hit you at any age; my aunt and uncle are testament to that. I cannot stress enough the importance of being aware and going to the doctor if you feel something is not right. Your doctor will have seen and heard it all before and much worse besides. They will treat you with care and in the strictest confidence so I urge you to go to the doctor if you feel something isn't right. It could very well save your life.

I know some people struggle to understand why I spend so much time and energy writing this blog and all the other cancer related work I do. Days like today should make people understand why this is all so important to me. I have six mimossimou’s a year (Death anniversaries in Greek).  That pain and grief is difficult to portray in words but it is very real. If I can save ONE life with this work and this blog then it is all worth it.

Please do read about bowel cancer and some of the charities around to help people prevent the disease as well as support people with the disease. Please do read about the symptoms and read about how you could potentially prevent yourself from developing this horrific type of cancer.

Life is the most precious commodity we possess and we should respect it and look after ourselves to try and preserve our lives as best we can. Check your bowels, get to know what is normal and please do seek medical advice should you feel something is not right.

Beating Bowel Cancer - http://pennysophia.blogspot.co.uk/2012/11/charity-showcase-beating-bowel-cancer.html

Bowel Cancer and Bowel Cancer UK – http://pennysophia.blogspot.co.uk/2012/02/bowel-cancer-uk.html

xxx