The End of an Era.

Exactly two years ago yesterday I sat at my computer and started this blog. It became a creative outlet for the wannabe writer within. I learnt lots, I achieved lots and I wrote lots. I have loved this blog and all it has done for me. Almost 31,000 worldwide views later and the time has come for me to admit defeat and admit that I just don’t have any time to dedicate to the research needed to write this blog. It is a painful decision to make, which has been made harder by the slight lack of understanding by some about just how much this blog and my voluntary work means to me.

Thank you so much to every single person that has read this blog, sent me messages about the blog, written for the blog or just shown support for the blog. It really means a lot to me and if this site has helped just one person then it has all been worth it!

This blog has been a saviour to me, a creative outlet for the grief I feel about those I have lost. A way of learning more about the disease that has affected so many people I love. A way of expressing my emotions and my feelings.

Thank you for your support J xx

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

Bone Cancer Awareness Week 2013

This week is Bone Cancer Awareness Week so I just wanted to do a quick blog post to highlight the facts about bone cancer. Like most of my blog posts, this is dedicated to my lovely cousin Georgie who suffered from the most common type of bone cancer, Osteosarcoma.

Bones:

The human body is made up of over two hundred bones, all of which support and protect the body whilst also allowing us to move. A bone is a frame made up of supporting tissue (connective tissue) and minerals (calcium for example). This frame gives the bone strength. Throughout the frame are bone cells.

There are three main types of bone cells:

Osteoblasts – build up the bone frame

Osteoclasts – break down bone

Osteocytes – osteoclasts that have become part of the bone frame

These cells work together to keep bones healthy and to maintain their shape.

Bone Cancer:

Primary Bone Cancer - When cancer develops in the bone cells first

Secondary Bone Cancer – When cancer has spread to the bone from other parts of the body

Osteosarcoma – This is the most common type of bone cancer. It is the type Georgie suffered from. It is commonly diagnosed in children or teenagers but it can develop at any age. Osteosarcoma’s are usually found around the knee or upper arm. 

Georgie’s osteosarcoma developed in his jaw (the mandible) which is unusual.

Ewing’s Sarcoma – This type of bone cancer if mostly seen in teenagers, usually starting in their pelvis or leg bones but it can also develop in the soft tissues.

Chondrosarcoma – This is mostly found in middle aged people and is usually a slow growing form of bone cancer. It can start developing in the pelvis, thigh, upper arm, shoulder blade or ribs

Risks and Causes of Bone Cancer:

Primary bone cancer is actually very rare.  It is mostly found in teenagers and young adults which is very unusual for cancer. There are around six hundred cases of primary bone cancer every year in the UK. We don’t actually know exactly what causes bone cancer but there are several known risk factors for this type of cancer: exposure to radiation, previous treatment involving certain chemo drugs, certain bone diseases and some rare inherited genetic conditions (as was the case with Georgie) If you are known to be at high risk for bone cancer, you will be given regular x-rays to screen for the disease.

Symptoms of Bone Cancer:

The symptoms are not exact and will depend on the size of the cancer and its position in your body. Common symptoms include pain, swelling, and problems with your movement or tenderness in a certain body part.  Other symptoms can include tiredness, fever and sweats, weight loss and sometimes a break or fracture in the weakened bone.

Georgie’s bone cancer was in his jaw. The first symptom was a tingling feeling on the right side of his upper lip. This soon developed into numbness.

Treating Bone Cancer:

As with all cancers the stage and the grading of the cancer is hugely important and will help determine which course of treatment is best for you.

Chemotherapy – you may have chemo to shrink the tumour and make it easier to remove or you may have it after surgery to try and get any cells that may have been left behind.

Radiotherapy – Radiotherapy is used in the same way as chemo – especially for some types of Sarcoma

Surgery – Limb Salvage Surgery involves removing the part of the bone with the tumour and replacing it with a bone graft or prosthesis. Limb Amputation may be necessary the cancer has spread into the tissues or if your specialist feels you are at high risk of having the cancer come back.

As with most osteosarcomas, Georgie has limb salvage surgery and his jaw was replaced with a graft using bone from his hip. He also had lots of chemo. Unfortunately the cancer was not completely taken away and he had yet another replacement a few months later. Some cancer cells were left behind and were able to spread to other parts of his body quite quickly. He managed to cope extremely well with the surgeries and was always out of intensive care and able to walk and talk much quicker than anyone expected. He was incredibly brave and fought his cancer really hard; unfortunately it was just too aggressive for him to cope with in the end.

If you are worried about bone cancer or think you might be at risk of developing it, please visit the CRUK website www.cancerresearchuk.org or contact your GP and discuss your concerns with them.

For more information on bone cancer and Georgie’s story, please visit www.anticancer.org.uk