Pancreas

New Recipe Book from Pancreatic Cancer Action

The latest news from Pancreatic cancer action:-

“Pancreatic Cancer Action has launched a recipe book to help alleviate one of the key side effects of pancreatic cancer: the inability to maintain weight and a nutritional balance. The book was developed by University College Cork and is available to patients, carers, hospitals, pancreatic cancer specialist centres and cancer support facilities to order free of charge from Pancreatic Cancer Action.

Pancreatic cancer affects a patient’s ability to digest and absorb vital nutrients from food, which can cause pain, changes in bowel habit, decreased appetite and nausea. These symptoms can put patients at risk of suffering from malnutrition.

Ali Stunt, chief executive of Pancreatic Cancer Action, said: “Good nutrition is a crucial part of any pancreatic cancer treatment programme, as so often the symptoms of the disease and side effects of treatment can make eating a real struggle.”

Nourishing your Body during pancreatic cancer treatment features over 80 recipes, which, using scientific evidence, have been developed by dietitians and chefs so that they are nutritious and can be easily tolerated.

Author Aoife Ryan, who is a dietitian at University College Cork in Ireland, said: “Our team of oncology dietitians and chefs, have worked hard over the last year to translate the nutritional advice for people with pancreatic cancer that are losing weight into simple, nourishing and enjoyable meal ideas.“

The production and distribution of the book is courtesy of a grant from the Rosenfield Family. Ali says: “I’d like to say thank you to the Rosenfield family who kindly sponsored the book in memory of Kim Rosenfield, who sadly passed away from pancreatic cancer last year.”

If you are interested in ordering a copy, you can visit http://www.pancreaticanceraction.org, call 0303 040 1770 or e-mail enquiries@panact.org.”

Weight loss and self identity

When our body changes through illness, accident or injury we have to develop a new relationship with ourselves, with our new physical identity.

For me it was weight loss through illness. For most of my adult life I had been around 140lbs, but when I went into my 40’s this gradually increased to 148lb, and it was a continuous battle to remain at that weight. There were a few exceptions, for example prior to getting married I was eating 1300 calories a day and it still took 4 months for me to loose 8lbs prior to our wedding in 2013, needless to say it soon went back on. Then in the late Summer of 2014 I naturally began to lose weight which I put down to a change of diet; drinking smoothies and eating lots of salads, but the weight continued to fall through the autumn.

After an episode of acute pancreatitis – where the pancreas becomes inflamed and the digestive enzymes it produces begin to digest the pancreas itself – my diet became more restrictive. I was eating less generally, as well as having a low fat diet (less that 35g of fat a day bearing in mind an Avocado pear is around 20g!).

However, due to the pain I was in, eating wasn’t enjoyable, it became a chore rather than a delight. Anything containing too much fat caused me discomfort as my pancreas wasn’t able to digest it properly.

I struggled to get used to my lighter weight and what I called my scrawny shape. Why? Because it wasn’t my choice. The interesting thing about losing weight when it’s not planned is that there is a sense of confusion about why it was happening and also a concern as to when it would stop.

How low could my weight go for me still to have enough energy to get through daily life?

Then when I was diagnosed with a pancreatic tumour (IPMN) in January 2015 the weight loss made sense, at least I knew why, which was a relief. Also, the tumour could be removed, an even greater relief.

By the time I had surgery to remove my tumour I was down to 120lbs, the last time I was this weight I was a teenager! Having lost 2 stone none of my clothes fitted, everything was baggy, making my weight loss more obvious. I became gaunt as my face became thinner.

My sense of identity had never been challenged before, and I didn’t know how to adjust to the change. It was like I had been given a new body to live in, a very disconcerting feeling. My view of myself changed. I may have looked a thinner version of my usual self to everyone else. But I felt small, not just physically but psychologically too, it felt like everything about me was diminishing, fading.

Fortunately as with most things, it was time that allowed me to accept my new shape and identity. I literally had to shrink into my own skin and then as I got used to it, I became stronger and more confident in myself and my new body.

When we chose to change our body shape, it’s because that is what we want to do, and therefore we are delighted when we achieve it whether that is due to diet, exercise or surgery.

Having lost 28lb in the 12 months prior to my operation, it has taken 9 months to put on 8lbs due to a low fat diet. But I now finally feel comfortable and well in my own skin, and I am enjoying having a new body, a new shape, a new identity.

It takes time to adapt and accept physical changes. I am fortunate, I haven’t lost a limb or one of my senses, I just have an abdominal scar that fades with each passing day. I also have age on my side, at 50, I no longer want or have any expectations of a ‘perfect’ body, what ever that may mean. I am just happy that I have a body that is still functioning and enables me to live fully.

London to Brighton Cycle Ride

Boldness has genius, power and magic in it. Goethe

Or in my case madness…… I have signed up to do the London to Brighton Cycle Ride on the 11 September 2016 to raise money for Pancreatic Cancer Action and Rigpa UK, and I could do with some help so if you are able to do any of the following, that would be wonderful.

a) Join me cycling London to Brighton – it would be great to have some companions along the way http://doitforcharity.com/do-it-for-charity-london-to-brighton-2016.aspx

b) Sponsor me – every donation – every £ helps.

http://www.doitforcharity.com/lovingmypancreas
for Pancreatic Cancer Action.

http://www.doitforcharity.com/SuzanneRoe for Rigpa UK

c) Support me – help me tell other people what I am doing, by liking and sharing this page, following me on Twitter @suzanneroe and retweeting some of my posts.

d) Do all of the above – I may be pushing my luck with this option!! 😀

Many thanks in advance for all your help 🚴🏼

 

Pancreatic cancer – survival rate unchanged in 40 years!

Last week on World Cancer Day, Cancer Research UK released the latest statistics showing that cancer deaths in the UK have fallen by almost 10% over the last 10 years. In addition, the 10 year survival rates from some cancers have significantly improved since 1971, all of which is positive news.

However this is not the case for pancreatic cancer where the rate of people dying from pancreatic cancer has not only increased by 8% but the 10 year survival rate still remains BELOW 1%,  the same as 40 years ago, which quite frankly is appalling.

Pancreatic Cancer has the lowest survival of all 21 common cancers

The general consensus for the poor survival rate is that it is often diagnosed too late, as there are few symptoms. However there is also another factor which is the lack of funding for research into pancreatic cancer which lags well behind that of other cancers.

“While funding for pancreatic cancer research has increased marginally over the past 10 years it still accounts for only one per cent of overall research funding and only two per cent of site-specific funding. This is despite it being the fifth largest cause of cancer death in the UK.”
Pancreatic Cancer Action.

I know that this will change, it has to, because as research into others cancers results in earlier diagnosis, treatment and longer life expectancy then at some point in time the spotlight will eventually be on the incredible low survival rate of those with pancreatic cancer.

Also I believe that the incidence of pancreatic related illness, like Acute and Chronic Pancreatitis, Cancer and Diabetes will continue to increase.  Why?  Because the pancreas is the one organ that regulates sugar levels in the blood and also the only organ that digests fats. So as our diets continue to increase in fat and sugar, namely in processed foods, so to will the stress on the pancreas.

If you want to show your pancreas some love try to moderate your consumption of sugar, fat and alcohol or at least take the time to read the label on 1 or 2 ready meals in your trolley, whilst waiting at the checkout, starting with what you buy the most. You may be surprised by their contents, I was and I had thought that I was a healthy eater.

References;
Cancer Research UK, article and stats on cancer death rates
Funding statistics for cancer research, from Pancreatic Cancer Action

 

 

 

2016 – Contentment & Creativity

I begin each year not with a resolution but a theme or two to focus on throughout the year.  But where do I want focus my attention in 2016?  There are just so many positive themes to choose from.

As 2015, and my year of gratitude comes to an end I have been continually surprised by what an amazing theme gratitude has been, as whatever happened I could always find something for which I was grateful and appreciative, which has helped me to focus on the positive during a difficult year.

One thing that I found, which arose from being grateful, was contentment. Contentment which I so easily overlook in my search for whatever is happening next. The one thing that illness gave me was the opportunity to be more reflective about my life and the wonderful people in it.

To me contentment is more subtle than gratitude. Gratitude is something that I can think about and then write into a diary or journal. But contentment is more elusive as it is a way of being. So I feel that my year of contentment will require the application of a bit more awareness, than normal 🙂

So, some of the things I am looking at doing are:

  1. Continuing with my daily gratitude diary.
  2. Creating space by not over committing myself – which is a habit of mine, then I wonder why I am stressed and tired.
  3. Thinking before I buy – do I really need it?  I can always leave it in the online basket for a week or two and see if I still want it!
  4. Taking time to be present, through meditation, Tai Chi and walking.
  5. Reminding myself when the going gets tough to Breath and Smile 🙂

As for the theme of Creativity, well that has spontaneously arisen from a combination of things that I enjoy and want to engage in more wholeheartedly, like:

  1. Spending more time sewing, I want to see if I can design and make one new item every month – cushion, skirt, bag or dress.
  2. Cooking, I am going to try one new recipe each week – I am fully aware that I may end up eating a lot of soup!! but seeing that I was kindly given 3 cookery books for Christmas there is no excuse really.
  3. My hurricane lamp project, each month creating a new theme.
  4. Writing this blog in an attempt to articulate my thoughts a little better and to create some pages with information about the pancreas, it’s function and the diseases that effect it.

So 2016, I am fired up and ready to roll, bring it on.

Cushions
A few of my previous projects 🙂

 

 

 

2015 gratitude and compliments

At the end of 2014 I decided that instead if having a New Years resolution I would have a theme to focus on, and for 2015 that theme would be gratitude. It was a theme that has proved to be somewhat challenging especially as on the 2nd January I was dignosed with a rare tumour (IPMN) in my pancreas. So literally 40 hours into 2015 I was thinking why me, and gratitude was the furthest thing from my mind.

Whilst my tumour didn’t seem something to be grateful for, I soon realised without having an astute consultant and the latest diagnostic technology it wouldn’t have been diagnosed at all! And that was definately something to be grateful for as without an early diagnosis the outcome could have been very different.

So as the year unfolded, it was by trying to find ways of being grateful despite pain, uncertainty, surgery and depression that helped to keep me positively focused and began to give me a wider perspective on life.

The initial biopsy proved inconclusive so I wouldn’t know if the tumour was malignant or benign until after surgery. Surgery wasn’t optional as IPMN tend to progress from benign to malignant, so it was all about timing. During this period of uncertainty I spent a lot of time thinking about life, illness and death, not the most cheery of times it does have to be said!  But it gave me time to realised how easy it is for me to live lost in the activity of day to day life without appreciation and gratitude for life itself and all the opportunities it offers.

My next major hurdle was the surgery itself, which had to be done in a specialist hospital as the pancreas is a difficult organ to operate on, and I was incredibly fortunate to be living 40 minutes from just such a hospital. Which was so new, that the futuristic ICU resembled the inside of a space ship, bearing in mind that I was on morphine when I saw it!!! I soon appreciated how lucky I was to be living in a country with an amazing health care system, well qualified medical personnel and access to pain relief!

I up-cycled (I just love that word) an old notebook into a gratitude diary to ensure that I wrote at least one different thing each day that I was grateful for. Which ranged from; finding a delicious new ground coffee; expressing my gratitude by sending compliments instead of complaints to the various NHS hospitals who took care of me; to being grateful that my wonderful sister didn’t make me laugh when she took care of me (as sneezing, coughing and laughing really really hurt after abdominal surgery!)

I am grateful that I found forums which helped me to realise that I wasn’t alone, there were others going through the same uncertainty, the same surgery, the same pain, the same frustrations and we could share our experiences.

As we near the end of 2015, I find myself more appreciative of all that I have in my life including the most amazing family and friends. Also I am making a concertive effort not to overcommit myself and instead allowing myself more time to experience those individual moments and people that bring a smile to my face and warmth into my heart.

As for 2016, the themes that I have shortlisted so far are laughter, contentment and simplicity so if you have any other suggestions for my 2016 theme, I look forward to hearing from you 🙂

Why am I here?

The meaning of life aside – I am here to collate all those random life notes and ideas that, in my case, usually end up on the back of envelopes; underlined in books; or ripped out of magazines. Which for some reason I am never able to collate into a useable source of information, let alone index and find again. (more…)

Finally made it…

Finally I have made it here, despite a week of challenges with domain names and various things IT related. I have been living with half a pancreas, no gall bladder and no spleen for 7 months now and am hoping that this this blog will enable me to collate my research of all the information, recipes and advice that I come across to help me nourish my body, mind and soul. (more…)