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

Pseudomyxoma Peritonei Awareness Month Part Two

Post number two for Pseudomyxoma Peritonei Awareness Month and today I will be focusing on the cancer itself. I hope you find this post interesting, remember to check Pseudomyxoma Survivor to find out more. I will be using the abbreviation PMP in this post.

PMP usually begins as a slow growing tumour in the appendix known as a low grade appendiceal neoplasm (LAMN). It can also begin in the bowel, bladder or ovary but this is very rare. The causes of PMP are currently unknown.

Most PMP sufferers don’t have symptoms but when they do, they can include:

*Slow Increase in Waist Size

*Hernia

*Loss of Appetite

*Unexplained Weight Gain

*Abdominal or Pelvic Pain

*Changes in Bowel Habits

*Appendicitis

As with most symptoms, the above do not mean you have PMP but they should be investigated by a doctor to rule anything out.

PMP can be difficult to diagnose and can sometimes be incorrectly diagnosed, as my friend Dawn Green discovered. It is sometimes discovered during an operation for another issue or during investigations into abdominal symptoms. A CT scan can be used to make a PMP diagnosis but biopsies and operations are also sometimes required.

As with most cancer types, PMP is treated depending on a number of factors including your general health, the size and position of the tumour and whether it has spread or not.

Radiotherapy isn’t suitable for PMP as the PMP cells aren’t sensitive to radiotherapy and they are usually spread over too large an area for this treatment type to be effective.

Surgery may be offered to treat this cancer type and is available in two forms:

Cytoreductive Surgery and Hyperthermic Intraperitoneal Chemotherapy (HIPEC)

This is also known as the Sugarbaker technique (as Sugarman is the name of the surgeon who developed it) and can also be known as The Mother of All Surgeries. It is an intensive treatment that is used to remove the tumour and hopefully cure PMP. It involves removing the lining of the abdomen or organs such as the bowel and gallbladder as well as the fatty tissue found in the stomach (omentum). Women may also have their uterus and ovaries removed. Around half of people undergoing HIPEC require a stoma (colostomy bag) but this is usually temporary and can be revered after around six months.

The second part of the surgery involves a heated chemotherapy drug being put in the tummy for around ninety minutes once the tumour has been removed. This is known as Hyperthermic Intraperitoneal Chemotherapy or a chemo bath. The combination of the heat and the chemo aims to kill any of the cancerous cells that may have been left behind.

This is a huge operation and can last around ten hours. It also involves a stay in the critical care unit whilst you recover and you may in hospital for around two weeks following the surgery. It has possible serious complications which should be discussed with you beforehand.

There are two specialist centres that offer this surgery: The Basingstoke and North Hampshire Hospital and The Christie Hospital

Debulking Surgery:

This is done with HIPEC is not possible. The aim of this surgery is to remove as much of the tumour as possible to reduce the symptoms. It can involve removing the omenum and bowel as well as the uterus and ovaries for females.

This surgery is unlikely to remove all traces of the cancer and it is likely to grow back afterwards which means further debulking surgeries may be needed. The downside of this is the procedure becomes more complicated and there are fewer benefits but more risks. A permanent stoma is sometimes needed after this kind of surgery to prevent bowel obstructions.

I hope this post has been informative for you. Please do check out Dawn’s fantastic charities website for more information http://www.pseudomyxomasurvivor.co.uk/

xxx

Guest Post: Rosa MacPherson - My Cancer Journey

Happy Friday!

Another one of my fabulous ambassadors has written a piece for this blog. I've featured the lovely Rosa on this blog before (http://pennysophia.blogspot.co.uk/2012/09/cancer-research-uk-ambassador-showcase.html). I hugely admire Rosa's spirit; she is incredibly brave and very proud to stand up for what she believes in. She is also a wonderful supportive person and very interesting too. She fully deserves her commendation at the Flame of Hope Awards, she is a wonderful asset to Cancer Research UK. I'm honoured she has allowed me to share this incredible piece of writing with you. Rosa has been through some horrific things and I think she is hugely inspirational. xxx

It was 2008, just a few months before I was diagnosed with uterine cancer. I walked up the steps into the chapel and took a deep breath. I didn’t feel ill but I felt far from well.

I looked at the face of my dead mother lying in her coffin. Strangely enough she looked more like herself than she had done in recent years. The Funeral Director had applied her lipstick and painted in her eyebrows and I had made sure she was wearing a pair of her favourite earrings: multi-coloured parrots. She had on her bright beads and her flowered shawl was draped across her shoulders.

Every part an elderly Polish peasant, once more restored to an image of herself she was happy with.  And which made me smile.  At last she seemed like herself.

She had not had an easy death: she starved slowly over a long period, unable to live following the death of my father four years earlier in 2004.  He’d endured amputations, gangrene and late onset diabetes following a lifetime of smoking about 60 a day. He died a heroic death in 2004; facing death squarely and cursing the fact he had ever smoked.

At that time he’d urged me to stop smoking but I didn’t. In fact when he died, my mother, then aged 83 took up smoking; half-heartedly I admit.

Six months following his death my husband George was diagnosed with lymphoma. An ex-smoker he faced chemotherapy with determination and courage and urged me to stop smoking -- but I didn’t.

He was dead within six months of my father and I kept right on smoking.

I developed pre-cancerous cells in my cervix and had treatment to remove them. I was warned that smoking increased my chances of the cells becoming abnormal again. But I kept on smoking.

I took a year out of life and escaped to Poland where I lived on a writer’s grant and tried to trace my parents’ family. I tried to make sense of my family history and myself. I think I felt a deep introspection growing inside me and I felt the loss of those I loved. I tried to fill it with opera and theatre and vodka and cigarettes. In Poland smoking was almost compulsory.

So I kept right on smoking. What was the point?  Anybody could drop dead at anytime. You ‘ve got to die of something, right?

Then in 2008, a full year after I had returned from Poland I decided to finally quit. My son had lost his father and his grandfather and watched as I was smoking my life away. At the same time I watched as my mother withdrew from life; day after day renewing her determination not to eat; me renewing my determination not to smoke. One wanting to die, the other determined to live.

And then that day she died and I looked at her painted smile and thought , ‘how strange that she looks more like herself now, finally.’’

And then I suddenly started to bleed. I felt the blood gush from me and in shock rushed home from the chapel. I decided it was just the trauma of seeing her like that, looking happy to be dead, which had caused the spontaneous period. That’s all it was.

I had been off cigarettes for almost two years. A few weeks after her funeral I walked up the Ochil Hills, a guest member of a group of ramblers enjoying an Indian summer.  The walk was tough.  I was less fit than I ‘d realized and was desperate to get home even though I was enjoying walking to the summit, then down into the ravines at Dollar ‘s Vale of Gloom. The village of Dollar derives its name from Doilleir, an Irish and Scots Gaelic word meaning dark and gloomy. It perfectly suits the place – wild, savage at times but splendid in its greenery and energy. Looking over the Vale I felt the deep desire to connect with the place; to get a feeling for the lives lived here, the dark romance of the land and thinking about the turbulent histories of the age-old inhabitants of nearby Castle Campbell.  I thought of my husband, Georgie, as he fought for every  last breath he had remaining; his desire to be outdoors , just one last time, before  his life was gone.

I wanted to take all of it in.  For him. For my dad. For my mum. All the friends I had lost through cancer.

And then I felt it – the gushing of blood once again.

I wondered if I was going to make it back without any of the other walkers noticing my discomfort and distress.

Back home I crawled up the stairs on my hands and knees and joked about how unfit I was.

I was on the verge of the menopause; that’s all it was.

A surprise opportunity to see Leonard Cohen in an open-air concert at Edinburgh Castle later that Autumn should have filled me with excitement but something stopped me. My friend Anne sensed it as I suddenly jumped up during his rendition of Hallelujah, one of his most memorable songs. I rushed to the temporary portaloo pouring with blood.

It was the excitement of seeing Mr. Cohen and hearing him sing so mournfully. That’s all it was.

That’s what I told the Doc when I finally went to see her. She listened to each of the three occasions when I had bled but when I told her I walked out of a Leonard Cohen concert she shook her head.

“We’re going to have to see about this ,’ she said.

Still no word of cancer.

I was checked for fibroids. Yes, I had them. ‘Best get you a scan,” Doc said. So I did.

“Best get a wee bite out of you,” she said.

So I did.

And still I refused to accept anything was wrong with me. Menopause. Stress. Anxiety. Depression. Loneliness. Anything. Not cancer.

Cancer.

It was cancer. A phone call on the evening of Friday December 5^th 2008 changed my life.

I went out and got drunk. Then I went home and cried and cried, all of Saturday and Saturday night. On Sunday I sat on the couch, red-eyed and swollen. I listened to myself breathing, aware of my breath rising and falling, the oxygen filling my body with energy.

I was still alive. And I suddenly felt a calm descend on me and fill me with quietness and stillness.

I had no idea what was going to happen to me but I knew at that point I would survive this.

There is such a relief when you hit rock bottom.  With nowhere else to fall there is only a deep acceptance and a gentle relief.

I found I was very lucky: Stage 1 uterine cancer, spotted by my eagle-eyed and understanding Doc who, over the years, had taken the time to understand me; who knew that for me to walk out of a Leonard Cohen concert was not normal. It made her move, check me out.

Others are not so lucky.

I have a survivor’s guilt I think.  I lobby, I raise funds, I promote Cancer Research UK. I talk to doctors, scientists, fellow survivors but Georgie is still gone. Family and friends still gone:  Werner is gone. Donnie. Mary. Reiner. David. Ian. Margaret. Jean. And yet I have many survivors in my life too: Olive, Sheena, Rae, Alexandra, Karen. Linda. Me.

I wasn’t close to them all, but enough of them.

Cancer kills. Part of me thinks, well we need to die of something; why not cancer? But cancer is, in part, a manifestation of disharmony in nature, mutation in our bodies, our diets, our hearts, and our spirits. It has pervaded human life and set us challenges to fight back; find answers; change the way we live our lives, to encourage us to offer help, kindness and time to finance and support our fellow humans. Cancer is giving us the opportunity to feel wholly human.

Cancer changed my life. Took people I loved. Changed me. Made me strong. But I still feel I am not doing enough, for others, for the cause, for myself.

Four years on and I remain clear of cancer. I still drink too much,; I don’t walk enough and am overweight. I am not a saint but cancer has changed me. It’s made me realize my mortality. It has helped me reach out for my own humanity. And in doing that I found so much more.

Rosa Macpherson

Guest Post: Andy Millin – Why I Volunteer

Andy is one of my fellow Cancer Research UK Campaigns Ambassadors. He is always full of very interesting information and is very supportive of us all. He is a wonderful part of the group. He recently won an award at the annual Flame of Hope Awards, which is hugely well deserved and he attended the Queen’s garden party which is very glamorous and exciting!

Andy very kindly wrote a guest post for the blog as he knows I’ve been struggling to find the time to write recently. It’s a lovely piece of writing and really conveys what is means to be a volunteer for CRUK. I hope you enjoy it as much as I have. Thank you Andy!

I started volunteering for Cancer research back in 2000, when there was a radio shout out for help at the first Race for Life in Swindon. Living within walking distance of the park (it`s quicker to walk than drive) I thought I could go along and see what this new event was and help on the day. Having local knowledge of the park, I got involved with directing marshals to their designated points, and then taking control of a key crossover point on the course.

I remember the event as being pretty basic, compared to events today, but very enjoyable, meeting some great people, and enabling the women to enjoy their first ever race in Swindon. 2001 was pretty much the same, just helping out at the local event.

Things started to change in 2002 when I was asked if I could help at another event in Salisbury.

Since then I`ve been to many great events, Swindon, Salisbury, Newbury, Marlborough, Blenheim Palace, Dorney Lake, Bowood House, Longleat to name a few of the early ones.

For the last 5 years a small team of key volunteers have formed who follow an event manager to all of her events, between  8-10 per year, and also promotional work beforehand. It`s great to be part of such a team and the friendships that have developed over time are valued and exist outside of events.

This year, I will be helping to stage Swindon *2 , Cirencester, Gloucester, Cheltenham *2, Hereford and Worcester events…compared to other years, that’s a bit quiet, and I may need to find something else to do in the summer months

So, what do I do?  Well promotional work can be anything from looking after a stand, giving out promo information, to arranging and taking part in a Zumba flashmob to promote Race launch. Event days will see us on site, usually 5 am, often in a cold damp field, to set up and have everything ready for participants when they arrive. To date, I`ve done every job on event day, except the event managers role, so roles can vary dependant on what needs doing. The Race happens (that`s the easy bit), then we either have to clear down all the site, or freshen it up in the lunch break if there is a second event. There`s also local fundraising events, and last year, after about 4 months of saying I would, I joined the Cancer Research Campaign Ambassadors group.

Why do I give up this time? I`m lucky, I have no direct family who have been touched by Cancer, but I know many people who have. My greatest achievement….to see just one more sign on a participant that says ” I race for me..I survived” Even if it`s only one, my time has been well spent, but we are seeing a lot more survivors, so the work is paying off. Will I be back next year…YOU BET!!!!

New Blogs to Read

One of my fellow Cancer Campaigns Ambassadors, Dan Woolf has started a blog of his own which will focus on the latest developments in cancer research. Dan is very intelligent and is very interested in cancer research. I have chatted with Dan on several occasions and is always sounds very passionate about cancer research and is able to explain very scientific things in a way that is easy to understand He is very interesting and has plenty of interesting facts and figures to share with us all so I highly recommend a trip to the site to have a read!

I’m really looking forward to reading your posts Dan!

http://www.woolfoncancer.com/

Whilst we are on the subject of blogs and my fellow ambassadors, the lovely Ashley Petrons has started a blog so we can keep up with her pledge to do one charitable thing per day for every day of this year! Ashley is very passionate about charity work and is lovely to talk to so I really do think we should all keep up with the interesting ways in which Ashley does charitable things daily. It is also a great way to get ideas on your own fundraising and charitable deeds!

I’m really looking forward to seeing what Ashley does next!

http://mycharitycase.org.uk/

Fundraising Friends

I am quite possibly the laziest person in the world and have nothing but respect for the incredible people who push their bodies into amazing challenges for charity. I have lots of friends currently training for events to raise money for various charities and would like to highlight them today, so if you are feeling generous, please do spare some pennies for these incredible worthwhile causes!

Luke Claxton – Luke is a fellow Chelsea FC fan as well as a hard working father and partner (he welcomed his second child into the world yesterday!) He and his partner Faye are incredible charitable people. Faye opens up her salon to treat CLIC Sargent youngsters to some pampering on regular occasions and the couple regularly do charity events for CLIC Sargent, including a very successful annual golf day which has raised several thousands of pounds in recent years. Luke is running the London Marathon on April 21^st in memory of his mum, Veronica, who sadly passed away from cancer a few years ago.

Not only is Luke incredibly charitable, he is also very supportive of my charity exploits too and it genuinely cheers me to know there are families such as the Claxton’s out there working hard to help others in someone’s memory.

To support Luke’s quest to run 26.2 miles for children with cancer please click: https://www.justgiving.com/runforclic/

…………………………………………………………………………………………

Danni Mannix – Danni is my fellow Cancer Campaigns Ambassador for Romford. I have been privileged enough to get to know her, firstly as mentor and mentoree, and now as friends. She is a wonderful, kind, intelligent and compassionate lady and the current Charity Face of Europe. Danni regularly does charity events of all different varieties and she has many passions, most of which include helping people in some way. She will also be running the London Marathon in memory of both her Mum and her Nan.

Having had many conversations with Danni, I know she is full of brilliant ideas of how to raise funds and awareness of many different issues and I really admire her enthusiasm and compassion for others. I’m very lucky to have met her!

To support Danni through her 26.2 miles for Cancer Research UK please click: https://www.justgiving.com/Danni-Mannix-London-Marathon/

…………………………………………………………………………………………

Gower Tan – Gower is another fellow Cancer Campaigns Ambassador for Cancer Research UK. Gower is a lovely man, very enthusiastic and very passionate about CRUK and their aims. He is very encouraging towards his fellow ambassadors and takes part in many of our lively discussions and events. Gower somehow manages to find time for his campaigning and fundraising despite having a very busy job and a family to look after so I take my hat off to him!

The fact that this will be Gower’s THIRD London Marathon is incredible; it exhausts me to even think of attempting a marathon let alone three! I think having the willpower to train is a incredible thing – I need to get some tips from him!

To support Gower as he attempts his hat trick of marathons in London please click: http://www.justgiving.com/gowertan2013

……………………………………………………………………………

Sue Duncombe – Sue is another of my fellow ambassadors. She is very passionate and enthusiastic as well as very supportive of everyone else and their achievements. I haven’t got to know Sue as much as I would like to and I’m hoping this will change over the coming months.

Sue is going to cycling from Marble Arch, London to the Arc de Triumph in Paris. This is a challenge that I couldn’t even imagine being able to complete! I have been reading about Sue’s incredible challeges for charity and I am in awe of her. She pushes herself to the limit and achieves incredible things. Three hundred miles on a bike for four days is a huge challenge and I really do think Sue is absolutely amazing for taking on such a challenge to raise money for CRUK.

To support Sue as she cycles her way to France please click: https://www.justgiving.com/SueDuncombe2013

…………………………………………………………………………………………

Nancy Scott – Nancy is a heroine of mine. A busy wife and mother with a job and she still manages to find time to be a fundraiser and awareness raising extraordinaire! I really admire her courage, her determination and her very creative mind. She is the mastermind behind Little Legs for Life and has raised huge amounts for CRUK and other charities over the years. She is also the reason I managed to almost complete the Shine marathon – I would have given up at mile ten if it wasn’t for her!

Nancy will be part of a group hiking the Yorkshire Three Peaks to raise money for Harry Moseley’s Help Harry Help Others charity. They will be attempting this in twelve hours and have been training hard for it. I am very confident that Nancy and her friends will complete this challenge with great gusto and look forward to hearing about their next challenge as they are always finding interesting ways of raising money for important causes.

To support Nancy and the Hike for Harry please click: http://www.justgiving.com/hikingforharry

…………………………………………………………………………………………

Rosa McPherson – I have mentioned the fabulous Rosa on this blog before. An incredible lady with a huge amount strength, humour, compassion and intelligence, she is also one of my heroes. She is another ambassador and she is a powerhouse of ideas and campaigning gusto. I love reading her posts and we share a love of The Sopranos amongst other things so she definitely has good taste!

Rosa will be doing the Stirling Race for Life in May this year to raise money for Cancer Research UK. She has been fundraising for a while and I am always struck by her fun way of thanking everyone for their donations.

To support Rosa as she shows support for CRUK in Scotland please click: http://www.raceforlifesponsorme.org/rosamacpherson8?utm_source=DM&utm_medium=email&utm_campaign=2013_Wel

………………………………………………………………………………

The LWC Nurses – I love working for the LWC and get to work with some incredible people. Our wonderful nursing team are taking on the Blackheath Race for Life this year in honour of our colleague who is currently fighting cancer. The girls are determined, hard working ladies and I have no doubt that they will finish the course in one piece. They spend so much time looking after our patients and really deserve some support for this challenge.

To support the LWC nurses as they attempt 10k on a hot summer’s day please click: http://www.raceforlifesponsorme.org/rices-runners

…………………………………………………………………………………………

As you can see I have some incredible friends! I actually feel disgustingly lazy after writing this post, so much so that I have actually thrown my chocolate bar away and considered a visit to the gym tonight.

Times are hard and most of us are scrimping and saving at the moment but if you could show some support to any of these incredible people and the charities they support then your generosity will be gratefully received J 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

Smokefree Action Day

Happy Valentines Day one and all!

So it’s been six months since the consultation into introducing plain, standardised cigarette packets closed. The hard work is still continuing though and I wanted to use today’s Smokefree Action Day to remind you all of the key messages of our potentially historic campaign.

The whole point of this campaign is to persuade the government to introduced standardised packaging for cigarettes to stop the packets being used to entice children and young people into taking up smoking. IT IS NOT AIMED AT CURRENT SMOKERS AND MAKING THEM FEEL FORCED INTO GIVING UP SMOKING.

Over the years cigarette companies have been forced to give up their advertising etc…. which has meant they have started to focus on the packaging and using it as a way to attract young people. Half of all long term smokers die due to a smoking related illness, over 100,000 deaths per year in the UK are down to smoking. Tobacco companies need to replace the smokers they have lost and they target children and young people to do so. The key thing to remember is, if you become addicted to smoking as a child then it isn't a choice you've made as an adult, it is a childhood addiction.

 Australia introduced standard packs in December 2012 and so far retailers have found it easy to implement. There doesn't appear to be any evidence to suggest it has increased smuggling.

As most regular readers of this blog will know, the CRUK ambassador family went to Westminster in June 2012 to convince MP’s to support the introduction of standard cigarette packs. We also had a petition which over 79,000 members of the public signed to show their support. Over 200,000 members of the Great British Public have contacted the government to show they agree with standard packaging so far.

Years of research has proven very clear links between cancer and smoking. In fact smoking kills five times more people then road accidents, murder, suicide, HIV and overdoses in the UK. One in every four cancer deaths in the UK is directly caused by smoking. a fifth of all cancer cases in the UK are also directly caused by smoking. Cancer Research research shows that smoking is the most important PREVENTABLE cause of cancer in the world.

More then four in five cases of Lung Cancer are caused by smoking. Lung Cancer has one of the lowest survival rates. it is the most common cause of cancer in the UK. Most of these cases are preventable if you give up smoking and allow your lungs to recover.

As well as Lung Cancer, smoking also increases your risk of over a dozen other cancers:
* Mouth
* Larynx (Voicebox)
* Pharynx (Upper Throat)
* Nose and Sinuses
* Oesophagus (Food Pipe)
* Liver
* Pancreas
* Stomach
* Kidney
* Bladder
* Cervix
* Bowel
* One type of Ovarian
* Some types of Leukaemia
* There is also evidence to suggest smoking can increase the risk of you developing Breast Cancer

There are at least 80 cancer causing substances in tobacco smoke. As you inhale the smoke these chemicals are released into your lungs and spread about your body. According to scientists; these chemicals can actually damage your DNA and mutate important genes, making your cells grow and multiply until they are out of control.

There is huge support for this campaign and I do hope the government listens to the facts and the support. There is still work to be done. If you would like to support our campaign then please follow the link below and let your MP know you agree with the introduction of standard packs. In the six months since the consultation closed, over 78,000 more children have taken up smoking. That is a huge number of children and half of those will go on to develop an addiction and die from a smoking related illness. Don’t let it be a child you love, show your support for the campaign today and lets give children one less reason to take up smoking. It will be a huge step in the right direction.

https://action.cancerresearchuk.org/ea-action/action?ea.client.id=149&ea.campaign.id=16993

Reviewing 2012: Part One – CRUK Volunteer Achievements

So 2012 is coming to a close and I thought I would do some blog posts to look back on the year.

Today’s post will focus on some of the achievements made by some of the 40,000 people who volunteered for Cancer Research UK this year:

Events and Volunteering

In 2012 over 11,000 volunteers supported 240 Race for Life across the country.  These events have raised over £50 million so far. 

Shine 2012 was supported by 480 volunteers in London and 384 volunteers in Manchester.   

This year a dedicated force of 794 volunteers supported our Cancer Research UK runners at third party events like the London Marathon and Great North Run.   

Fundraising and Volunteering

Volunteer fundraising groups have been busy again this year raising approximately £11 million through a myriad of different activities from Relay For Life to balls and last weekend, the famous Christmas Pudding Race in Covent Garden.     

On 26, 27 and 28 October 2012, we held a collection at 570 Tesco stores across the  country manned entirely by volunteers. This fundraising initiative was supported by 425 of our fantastic Groups and Committees, and a further 299 new volunteers who joined in to support the collection.  So far they’ve raised £210,261.26, and we’re still waiting for the final figures from 10 groups!  

 Ambassador Volunteers

The Cancer Campaigns Ambassadors have had a bumper year of success:

2012 saw of the introduction of covering up cigarette displays in larger retailers as a direct result of the “Out of Sight, Out of Mind Campaign”

The Answer is Plain campaign on the “Innovative Campaign of the Year” Award at the Public Affairs Award.

Over 100 Ambassadors took part in a hugely successful lobby of Parliament for The Answer is Plain campaign.

The Year of Radiotherapy campaign saw huge successes including David Cameron announcing a huge £15 million would be spent on Radiotherapy services.

Other Volunteers

Hundreds of volunteers have shared their stories for our brand campaign, Stand up to cancer, films for fundraising events, Little Stars campaign, Jubilee Beacon, Tesco charity of the year, national and regional press stories, ‘Give up clothes for good’, our Annual Review, Plain Packaging campaign, Francis Crick institute and all types of fundraising materials.

Many CRUK volunteers shared their stories to help promote the fantastic “Stand Up To Cancer” which has led to millions being raised for the charity so far

It’s been a hugely successful year for Cancer Research UK volunteers and I have had a great time taking part in some events and meeting some incredible people. Here’s hoping 2013 is even more successful!

If you are a CRUK Volunteer, please make sure you keep an eye out for #CRUKChatter on Twitter  - a great way to share ideas and meet other volunteers! Follow @CRUKWalton for more information!

xxx