It all started with the colour purple. Some, all or none of you may know that purple is the internationally recognised colour for pancreatic cancer. Pancreatic cancer charities in the USA universally adopt the purple colour in their branding. Other pancreatic cancer organisations in the UK and abroad have also adopted purple as their brand colour. We have all seen what pink can do for breast cancer, so maybe purple can do the same for pancreatic cancer? We can but try.
So, we have the colour and we are a charity in the cancer sector. Surely we need a ribbon, don’t we? Well, we could, but the ribbon, to me, doesn’t say anything other than cancer. And while we are an organisation dealing with cancer we are also dealing with other things too such as awareness and survival.
So, back to the pansy. Although it is found in other colours, the pansy fits the purple theme rather nicely and what is even more special is that it flowers during November (the winter variety anyway), which is the month during which we have Pancreatic Cancer Awareness Month.
However, while the pansy ticks the boxes on colour and flowering time, to me the most important symbol of the pansy that it is a living thing. Having a living thing as a logo is important, as I want it in itself to convey a message of hope.
The main focus of our work here at Pancreatic Cancer Action is to raise awareness of the disease and that means shouting about the dire survival rates, the fact that nothing has improved for over 40 years, the underfunding of pancreatic cancer relative to the disease burden and to stop pancreatic cancer from continuing to sit in the shadows of public consciousness. This is all too difficult to hear when you yourself have been diagnosed with the disease. A plague of negative statistics can be upsetting.
The flip side to this is that I too am a pancreatic cancer patient and as a survivor, I want to offer some form of hope to others who have found themselves in the same situation I did 6 years ago in August 2007 when I was diagnosed. And I continue to campaign so that more people will be able to have the same outcome that I have had.
Hope when there seems none is difficult to maintain unless there are advocates promoting the potential of hope.
The problem is, we in the pancreatic cancer world are short on survivors to provide that advocacy role (as so many have successfully done for breast cancer and recently prostate cancer) as only 3 to 4 % of the 8,000 or so people in the UK newly diagnosed with pancreatic cancer each year will survive 5 years. Randy Pausch (the American university professor who sadly died of pancreatic cancer in July, 2008) noted, “There aren’t celebrity spokespeople for the disease because too few survive long enough to take on that role.”
Celebrity or not, that campaign mantle role must be filled in order to awaken society to the realities of this disease – the 5th most common cause of cancer death in the UK and allow for pancreatic cancer, its risks, symptoms and prognosis to be familiar to us all.
If you have been diagnosed with pancreatic cancer and want to take on an advocacy role by sharing your story on our website or in the press, please get in touch via our contact us form
Type 1 diabetes has got a bit of publicity this week as Home Secretary, Theresa May has announced that she has been diagnosed with type 1 diabetes. Known as insulin-dependent diabetes, it generally affects younger people (often under the age of 40) but can occur in older people too.
People with type 1 diabetes have a pancreas that does not produce any insulin (to regulate blood sugar levels) and so need to have insulin injections to enable the glucose in the blood to move into the cells where it is converted into energy. Left unchecked, high blood sugar levels can seriously damage a body’s organs.
I was diagnosed with type 2 diabetes about a year before my diagnosis for pancreatic cancer and, despite the fact I was not overweight and had no family history of the disease, no-one, including myself, put this down to be a pre-cursor for pancreatic cancer. We now know from research that individuals in whom diabetes had only recently been diagnosed (less than 4 years) they have a 50% greater risk of developing pancreatic cancer compared with those who have had diabetes for 5 or more years.
A new diagnosis of diabetes in patients who are thin is of particular importance for GPs and other clinicians to look out for as a possible symptom of pancreatic cancer.
So, after having surgery for pancreatic cancer in September 2007. I have been managing my type 2 diabetes through a combination of diet and drugs; in my case Gliclazide. This drug acts to increase the amount of insulin produced in the body and, for the first couple of years, everything was under control and I was getting ‘model patient’ reports from my Consultant Endocrinologist.
Gradually though, the blood sugar levels have been creeping up and these past 6 months in particular I reached a point whereby I was on the maximum permitted dose of Gliclazide and, despite this, there was a limited effect on my now soaring blood sugar levels.
I had also been feeling very tired which I put down to the very long hours I regularly put in at PCA along with a recent stressful work-related situation. And I was constantly thirsty and also got into a habit of waking up frequently throughout the night. This I now know is (mostly) related to the very high blood glucose levels.
A decision was made by my consultant that the time has come to start insulin injections. I had been hoping that this day would never come as the thought of injecting myself multiple times a day was not that appealing! But what type am I? Apparently I am ‘special’ – in terms of diabetes classifications anyway! I don’t sit in any of the pre-defined classifications of Type 1 or Type 2 – so perhaps we can call it Type 1 and a half?
I started on Monday after a visit to my lovely diabetic nurse, Jackie who took me through the ritual and paraphernalia that goes with insulin injections: injection pen (which is actually very neat and portable), daily disposable needles, where to order the sharps bin from the local authority (it’s free!) and how often to check my blood glucose levels, monitoring my carbohydrate intake and even how to inform the DVLA that I am now an insulin dependent diabetic.
I was nervous about giving myself the first injection but I can honestly say, it does not hurt at all. It is a very swift, painless procedure. The difficult bit will be managing the carbohydrate intake and exercise and matching this up to relevant insulin doses in the future. However, as always, there is an app to help with that which I have downloaded onto my smartphone.
This is all going to become a new normal for me. But I have experienced a new normal before: I have had to come to terms with the fact that I have had pancreatic cancer and this diagnosis, despite being nearly 6 years on, will always be with me and I will always be in fear of it returning. However, I am lucky to still be here to experience the ‘new normals’ in life and daily insulin injections are something millions of people put up with every day, including Theresa May – and so can I. It is a minor inconvenience when you have survived pancreatic cancer.
If you have experienced diabetes with pancreatic cancer let us know how you have got on in our new pancreatic cancer forum.
I attended a special meeting held by the All-Party Parliamentary Group (APPG) on pancreatic cancer on Tuesday 18th June. Anna Soubry, the public health minister with a remit for public health and cancer, was there to address the attendees.
One of the most important outcomes of the meeting was the realisation that we at Pancreatic Cancer Action and our supporters need to be clear about what we are asking members of the government to do. In my opinion, we need to send letters to our local MPs asking for their help in tackling pancreatic cancer head on with a clear idea of how they can do this. We have drafted a template letter that you are welcome to download and send to your MP, which also encourages them to participate in the APPG Pancreatic Cancer.
The survival rate for pancreatic cancer has not changed in over 40 years. Only 3% of those diagnosed with pancreatic cancer survive beyond 5 years, and there is currently a lack of an effective cure and even life-prolonging therapies.
This is why the Health Consumer Powerhouse (HCP), who monitor and compare healthcare systems among EU member states, will produce the Euro Pancreatic Cancer Index (EPI) for the first time comparing and analysing therapy options and survival outcomes for pancreatic cancer around Europe. Earlier this year, I was delighted to be invited to join HCP’s Pancreatic Cancer Index Expert Panel with other pancreatic cancer ‘experts’.