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.”

Confidence in 1,000 miles

Like many things in life confidence is only found through practice. Just knowing that what ever I do repeatedly will get easier, keeps me going. Whether that be making a skirt or cycling, in both cases practice improves skill, understanding and technique, and with this comes confidence.

When I first got on a road bike in May, I was partly terrified and partly exhilarated. There was such a sense of freedom of being able to cycle at a moderate speed. But, for me there is an additional anxiety of about falling off, not that I just don’t want to injure myself, but also not having a spleen, means fighting infection and recovering from illness and injury takes longer.

But now that I have been cycling for oooooh almost 4 whole months, I can see how my confidence has built, firstly it was all about the bike. Things like getting used to the gears, I often ran out of gears going uphill, no idea how I managed to do that, but I did.

Next it was the shoes, most road cyclists used clipless shoes, which ironically clip on to the pedal, however before the clipless shoes, cyclist used straps which went over the pedal to position the shoes on the pedal for better purchase. I started off with regular pedals and trainers, then added straps to the pedals, then graduated into rigid sole shoes. I still haven’t tried the clipless shoes but am sure I will be in them for next spring.

Flying downhill at speed was fantastic until I learnt that most accident happen going downhill, so I am a bit more cautious now, not much, just enough to balance exhilaration with safety.

Sooner than expected I found myself able to go longer distances, going out on Sundays – working up an appetite and stopping for brunch before returning home – a wonderful way to enjoy the day. Having used Sunday’s to develop stamina for distances I then used my weekly rides to improve my speed. I have been using an app Map My Ride which has been a great motivational tool for me.

Finally I had to work on the hills – it looks so easy when watching Le Tour de France, even the mountain stages. I had no idea how tough it was going up even small inclines, but it’s all about practice and persistence – and so I have kept going until finally I made it up the highest local hill – I would have celebrated when I reached the top, but breathing seemed somewhat more important!

I had never before appreciated road surfaces, there are just to many different types, some are a joy, others soul destroying – in which case it’s usually time for a sharp exit.

So finally after 4 months and 1,000 miles I am ready to cycle from London to Brighton, on Sunday. It will be my longest ride  at 54 miles, but I am feeling confident and ready for the challenge, anyway I have to finish as I am being generously sponsored to raise money for Pancreatic Cancer Action in memory of my Mum, Joanna Roe who died of pancreatic  cancer aged 72.

 

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.

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

 

 

 

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…)