Patient Stories

People of PanCan, PCAM 2018

Click on the name below to read each of People of PanCan stories

Ceridwen | Colin | Penny | Terry | Kristine | Barry | Yvonne | Pete | Bonnie | Gillian | Jacinta’s father | Vicky | Martin | Ali Stunt | Kelley


Ceridwen

Ceridwen - People of PanCan, Pancreatic Cancer ActionI was pregnant with my second child at 34 years old and had a healthy pregnancy up to 27 weeks when I started to become jaundice. Firstly I started to itch, mostly on the palms of my hands, soles of my feet and my chest. Then my urine turned dark and I had steatorrhea. I got in touch with my midwife immediately and they organised blood tests. Investigations continued and after the birth of my son I gradually became more yellow. I had an endoscopy which revealed a cancerous tumour on the head of my pancreas. 4 weeks after diagnosis I started chemotherapy, I had 13 cycles altogether and was incredibly fortunate that I had minimal side effects.

After an initial, successful fight against pancreatic cancer, the disease has now returned and I am currently undergoing treatment.


Colin

My pancreatic cancer story began in December 2013 in Australia where I live
with my wife, Mary. With few symptoms, we received a shock diagnosis of primary
pancreatic tumour. This was followed by urgent Whipple surgery causing severe
internal haemorrhage which required 17 bags of blood to prevent cardiac arrest
and stroke, and more urgent surgery. I was in intensive care for over a week.

Colin - People of PanCan, Pancreatic Cancer ActionAs I recovered from the surgeries, on leaving hospital, I pushed for a prognosis
and was told ‘you should be good for one year’. However, this also came with the
words ‘everyone is different’ and ‘we hope for the best but plan for the worst’.

After returning home, my weight dropped by two stone. I was weak and had no
appetite and was at my lowest ebb. However, with Mary’s support, and a positive attitude, rather than worry about the little time I may have left, we set about overcoming adversity. Mary researched into diet which became very important.

It was a long bumpy road but nearly five years later, I am enjoying life with energy
and enthusiasm. My weight is ‘normal’ and steady and I enjoy my food. Mary has continued with a wholesome diet and I take selected supplements. Whether the supplements are helping, we don’t really know, but the medics now say ‘whatever
you are doing, keep doing it!’ Exercise is important, just a brisk daily walk, and a
rest mid. afternoon is beneficial to prevent tiredness setting in during the evening.

With regard to my cancer, as with anyone who has been diagnosed, there is no
cure, only good management of the condition is key to quality of life. I have had
some scary test results along the way that have led to chemotherapy. Blood tests
and CT scans are routine. I can add, at this point in time, the treatment is keeping
small liver lesions in check whilst I continue to live each day to the full.

A few additional things I might add is that as my post surgery recovery period blossomed from months to years and I realised I was becoming  part of an exclusive survivors group. I expected the medical professionals to get interested and ask lots of questions to understand the key features of my prolonged survival. They have the raw data from blood tests and lots of CT scans but apart from that nothing much else.

I expected lots of lifestyle questions about diet, alcohol consumption, exercise sleep, level of depression etc. so that others may have similar benefits. Instead I heard nothing which was disappointing.

After tons of reading my lovely wife and I concluded we had to do everything possible to aid the body to slow the development of the cancer so we developed what we classify as our own form of diet based immunotherapy. Love and support was essential as well. Some friends find the whole cancer thing difficult to converse about especially as many have limited personal experience.

So I drink copious green tea, green leafy vegetables, daily juicing, low red meat consumption, turmeric etc. The list is endless and again happy to share with anyone interested, so if anyone has any questions ( and I would have loved to talk with survivors in the post operative stage) again feel free to ask.

Survival strengthens hope for a brighter tomorrow.


Penny

Penny - People of PanCan, Pancreatic Cancer ActionI was diagnosed with advanced, terminal pancreatic cancer in 2013 at 50. My father died of PC in his fifties.  I saw a GP several times over three months with puzzling symptoms. These were put down to work stress and not enough rest. I was eventually diagnosed after being referred to via A and E with intermittent chest pain. my diagnosis was protracted as I was referred to a chest specialist who could see nothing wrong. Medically trained, I pushed for further investigations. A PET scan diagnosed the disease. I was offered palliative chemotherapy. it was emphasised that there would be no cure. The chemo was very tough, a process I submitted to as I wanted more time. I had six months of chemotherapy and a course of radiotherapy. The disease became operable a  year after starting treatment.  Major surgery saved my life. I am now 55 I look and feel on balance well. I am an insulin dependent diabetic now and have no spleen which means my immunity is compromised. I have learned to to live in a new ‘normal’ as life will never be the same. My health is my wealth and very precious to me, physical and mental. I make it my priority in order to cope with physical and mental health issues that I am left with. I am grateful to the specialist team that saved my life, the support i had from PCA and for the future I have to look forward to.


Terry

Terry - People of PanCan, Pancreatic Cancer ActionMy wife Penny was diagnosed with advanced pancreatic cancer five years ago. We had just got married and celebrated her 50th birthday in New York. The diagnosis was devastating as it was terminal. We clung to each other and together as a family whilst Penny endured  a year of unpleasant treatment which was hard for all of us. It was especially hard to watch Penny deal with all the side effects she had to cope with alongside the inevitable depression and anxiety which we also had. We were all ‘at sea’ as the disease ran its course. I felt helpless and sad and wished many times it was me not her. Penny’s disease, against the odds became operable and she has managed to get herself fit and well. Her original attitude to fitness helped and after she recovered from the surgery she completed her yoga teacher training. Pancreatic cancer is still with us as Penny waits out the remaining years of a 10 year remission period. She does have ongoing health issues such as diabetes and gastric problems but she manages it with minimal help from health professionals. Survival is rare so it can be a lonely for her and she has become more inward as she self preserves. We keep talking and help each other. I have a close family and good friends who have supported both of us. The help and support she has received from PCA has been invaluable and Penny has used her experience to raise awareness and help others cope. The disease has changed our lives. We live in a new version of what we had expected. A simpler life, we now live by the sea and are looking to the future. We have friends and family coming to stay and love our beach and coastal walks with our dog Stanley. We take each day and never look too far ahead. I went with her to an annual check up at the hospital yesterday and all is well.


Kristine

Kristine - People of PanCan, Pancreatic Cancer ActionMy name is Kristine Wilson. I was diagnosed with pancreatic cancer in October 2015 at the age of 42. I was terrified of what would come next. The number one thing I remember about the start of this journey is that I could not find a single “good” story out there. It is heartbreaking to not find many survivor stories out there. This does not help when you are trying to remain positive. I have since found a few role models to latch onto. I opted to travel 7 hours for my treatments every other week. This took a toll on my family as well as my job but we were able to make it work. My husband has been my number 1 supporter along with  family and coworkers. This helped me through a lot. I did a lot of online research and changed my nutrition. I love to share my knowledge with others. I have 3 month checkups like clockwork. September 2nd was my 2 year anniversary from my surgery and I remain cancer free. The checkups can be excruciatingly stressful. I love life and live one day at a time. I am blessed to be here and would love to help others on this journey.


Barry

Barry - People of PanCan, Pancreatic Cancer ActionIn January 2014 at the age of 33, it was discovered that I had multiple tumours on my pancreas. After finding this out, I was faced with a life changing decision, to have to all of my pancreas, gallbladder and spleen removed. This operation has totally changed mine and my family’s lives forever. With only a 5% survival rate, research is definitely needed for this cancer and every penny counts. Pancreatic Cancer Action is a charity very close to my heart and I am incredibly thankful for the support they have shown me in these recent months whilst preparing for the Snowdonia climb. I hope to do another challenge next year and I promise, PCA will be involved.


Yvonne

Yvonne - People of PanCan, Pancreatic Cancer ActionMe and My Pancreas

I had a distal pancreatectomy in January 2009 to remove a tumour from my pancreas followed by seventeen sessions of chemotherapy.. I was very surprised to learn afterwards the severity of the illness but taking a positive view I was always determined to get better and not be held back by cancer. Now almost ten years later I have been extremely lucky. Since retiring I have enjoyed life and I am able to use some of my time to do a few things for Pancreatic Cancer Action and volunteer for CRUK. The only downside is a recent diagnosis of Type 3c diabetes due to having only a small part of my pancreas left but I can live with that. I am so glad to be alive.

In January two thousand and nine

A lady in hospital did pine

The pancreas was resected

No treatment was rejected

Then she came home feeling fine


Pete

Pete - People of PanCan, Pancreatic Cancer ActionMy husband Pete was eventually diagnosed with pancreatic cancer in December 2011 and he lived for one year and 2 days from diagnosis.  A non smoker, had an excellent diet, grew his own vegetables etc., slightly overweight but not much.  Hardly drank but Liked a pint of cider at the weekends.

We had no idea where the pancreas was or had hardly heard of pancreatic cancer.  We were totally unaware of the symptoms.  I am guessing a lot of will have had no idea either.

Pete  had been feeling less energetic than normal and less enthusiastic about going out etc but had put this down to age.  He was nearly 10 years older than me and if I mentioned  anything about his need to sit down more etc he would say wait until you are my age.  He was only 69 at this time.

Late September 2011 he had a funny turn whilst up a ladder cleaning out the guttering and so we made an appointment to go to the doctor.  This resulted in various blood and urine tests and a sugar level test which was off the scale and was so high that the normal testing kit at the GP surgery couldn’t read the results.  So bloods were sent off.  That evening we received a call from the out of hours surgery, who had a blood test result, to tell him to take it easy and to get back to the doctor the next day.  He was given medication for Type 2 Diabetes.  This didn’t work! and within 2 weeks he was using insulin to control his blood sugar levels.  No further tests were made and no investigations even though it is extremely rare for a fit, non smoking, non overweight 69 year old male to suddenly become diabetic.  For a couple of weeks he felt better but then other symptoms appeared which again we knew nothing about.  His stools changed and were light in colour and had a strong odour and his urine was a very strong orange colour.  Back to the doctor.  He then had pain in his chest like indigestion.  More blood tests and more delays.  Eventually an emergency ultra sound which showed “something”.  Referral for a CT scan – by this time I had researched some of his symptoms on the computer and wasn’t liking what I was reading.  Pancreatic Cancer Action’s web site were listing all that was happening to Pete.  I got very concerned – in fact I can clearly remember reading their web site and going cold.   I rang Pancreatic Cancer Action and was amazed when Ali Stunt the founder of the charity answered the phone.  She was calm but concerned and talked to me about the possibility.   The symptoms were all there.  I wasn’t prepared to wait for the CT scan so we paid.  Again inconclusive but something could be seen,  and it was decided he should have an endoscopy.  Nothing  – BUT the breakthrough came that day via a Junior nurse who noticed that Pete had yellowish eyes.  She asked if we minded him being seen by the Gastroenterologist Consultant at the Alexander Hospital in Redditch.  Pete went yellower by the day and had intense itching.  We saw the consultant and within days he had performed an ERCP which allows the consultant to see the pancreas.  Sadly that was the day that my fears were confirmed.  He had found a tumour on the head of the pancreas.  Pete was referred to the QE at Birmingham and we had hope, as I had read and researched about the Whipple operation.  So like the story that ran in Coronation Streeet.  Appointments were made and we saw Mr Bramhall at the QE 3 days before Christmas 2011.  We were told on that day that they thought Pete was a good candidate for the whipple procedure and that they would remove the cancer.  Unfortunately we had Christmas and New Year to get through and they couldn’t do the operation until 17th January.  It seemed so long to wait.  The surgery date was altered and then put back to the original date which was traumatic, to say the least, and then the day came and just like Hayley in Coronation Street the tumour was wrapped round an artery so Pete’s cancer basically became inoperable.  They did what they could and made Pete more comfortable and the jaundice was cured.  He then started on a series of chemotherapy at Worcester Hospital but the tumour didn’t respond and he chose to stop the chemotherapy and enjoy the time he had without the effects of chemo.  We had a fair Summer with him not feeling too bad but from the September 2012 he went downhill and he passed away on 17th December 2012.

I just wish we had known the symptoms earlier.  Earlier diagnosis is one of the only ways to survive this dreadful and evil cancer.  We need more income for research and more funding from the Government.  Wonderful strides have been made with other cancers which is amazing but statistics for pancreatic cancer have hardly changed in 40 years and yet over 8000 people will be diagnosed with it this year and not many of them will survive a year let alone any longer.

I miss him so much and continue to do all I can to raise awareness and funds for Pancreatic Cancer Action.

Sandra, wife of Pete


Bonnie

Bonnie - People of PanCan, Pancreatic Cancer ActionCancer has affected our lives twofold. On one hand, it has turned our normal lives upside down. On the other hand, it has caused us to be thankful and appreciative for the things that we have. I suppose you could literally call it a blessing in disguise from that perspective. That said, my wife Bonnie had thyroid cancer in 2012 for which she had a total thyroidectomy. We thought we were done with cancer. In 2017 she was diagnosed with pancreatic/liver cancer….stage four. It was devastating news.  Bonnie has had biopsies, radiation, chemo, etc. She’s been through it all and when you’re told that you will need chemo for the rest of your life… that is very sobering. We still have one son in high school but I am fortunate enough to be able to work a lot from home. This is extremely helpful since my wife has to receive chemo every week. Frequently, she feels weak, tired, and nauseous and we just aren’t able to do what we used to. But cancer not only wears on you physically but mentally and emotionally as well. We do our best and try to take things one day at a time. Most people not directly affected by cancer don’t realize the overall impact from a physical, mental, emotional AND financial standpoint. I was one of them until it entered our lives. I realize now.

I love my wife with all of my heart and soul. She is truly the definition of a soulmate. It pains me to think about ever losing her as much as it pains me to watch her suffer through this. My hope for the next generation is that a solution is found to beat cancer once and for all. Too many people suffer with this disease today and too many families have to endure the hardships along with those affected.

Bill, Husband of Bonnie


Gillian

Gillian - People of PanCan, Pancreatic Cancer ActionIt didn’t happen suddenly, but after six months of unproductive primary care –  the cancer moved swiftly to reduce him to a shell. Malcolm lost his fight to live within a bleak five months. We had fought our little corner with no apparent support;  no  guidance, no “always available” cancer nurses, lost records, missing medication, indifferent emergency care, overburdened staff.  How could a health service make it worse for us than it already was  – quite easily at times.  This should not be happening to us … to anyone. My precious husband died a week after his 54th birthday; our future together over so quickly … but I had a fire in my soul to change the experience of others. It won’t happen suddenly, but I will make a difference.


Jacinta’s father

Jacinta's Father - People of PanCan, Pancreatic Cancer ActionFebruary 22 2017, my Father was diagnosed with Stage Iv Pancreatic Cancer the Drs had discovered Dads knee pain was actually coming from a blood clot in behind he knee. He endured 4 different types of chemotherapy eventually ending up with a portacath as the cancer fought back at the chemo, CT scans were starting to show Dads Cancer was spreading further and further as the months passed on by. He didn’t really development any signs of pain until November 2017. In Early February 2018 Dad’s appetite had completely decreased if not vanished by the end of Feb, all of February he spent in hospital being treated for jaundice. We knew he didn’t have long left when his breathing became very laboured I still remember the breaths he took the night before he passed away there was at least 15-20 seconds between each breath. On the 5th of March 2018 at 10:56am my Father was passed away, he had suffered a cardio respiratory arrest.Only 8 days later was he due to walk me down the aisle.


Vicky

I lost my dad in 2011, 5 weeks after he was diagnosed with pancreatic cancer. It was a huge shock.  He became so painfully ill so very quickly, and then he was gone.  It still seems inconceivable that no doctor saw it coming.  It took many visits to A&E before he was diagnosed, and then it was too late, nothing could be done.

In 2013 I volunteered for Pancreatic Cancer Action because they work so hard to change this all too typical story.  I am now a permanent member of the vibrant and dedicated PCA team, striving for earlier diagnosis and better chances of survival.  I don’t want any other family to go through what we did.


Martin

After he contracted a 2nd urinary infection in a short space of time, his Dr wanted the cause to be investigated so sent him for an ultra sound scan. The scan picked up a shadow on his pancreas, so he was sent immediately for a CT Scan. When he got back to the ward he was greeted by a Pancreas Specialist. He wanted more tests done and as a result they found the tumour. Because of other medical complications he had to wait 6 months for the Whipple procedure, which was performed by Professor David Stell at Derriford Hospital in Plymouth. He spent 2 weeks in intensive care, and the only down side is he is diabetic and has to have 4 insulin injections per day. But as he said, it’s a lot better than the alternative. This was 8 years ago, and in a couple of weeks he is celebrating his 80th birthday at a party where he will be raising funds for PCA instead of receiving gifts. He saw Professor Stell some time later and thanked him for saving his life, and at the same time gave credit to his wife Mary for nagging him to see the Dr and for all the aftercare. He is an amazing man and doesn’t look 80. Mary is just so grateful that they have had these years together. She had a cousin who was lost her fight with pancreatic cancer, who despite repeated visits to the Dr, died a few weeks after diagnosis.


Ali Stunt

In 2007, I had just accepted a place from Imperial College, London, to pursue a PhD but started to experience symptoms that just didn’t sit right with me. I decided to go to my GP and express my concerns. It took quite a few trips and a trip to A&E but eventually, because of a private referral to a specialist,  I was diagnosed with pancreatic cancer. Luckily, I was diagnosed early enough to have life-saving surgery. I didn’t tick any of the risk factor boxes; I am not over 60, I don’t smoke, I don’t have a family history of pancreatic cancer and until a few weeks before diagnosis, I was very fit and healthy. It’s so important that we know our bodies, recognise when something doesn’t feel right, and have the courage to talk to our GPs about what might be considered ‘embarrassing symptoms’.  It is also really important that if you have already been to the doctor and your symptoms are persisting or getting worse, you should go back and keep going back until you get a definitive diagnosis. That’s what I did and is one of the reasons I am still here surviving pancreatic cancer 11 years later.


Kelley

If you had asked me 8 years ago what I knew about pancreatic cancer I would have replied with ” I have never heard of it”. Then in June 2011 my whole world collapsed as my mum Janet Priest was told she had pancreatic cancer that had spread to her liver and spleen with no option for treatment and she probably only had 3- 6 months left to live . My mum died 7 weeks later on August 11th .
Ask me now what I know about pancreatic cancer ! I live and breathe for fighting for early diagnosis, to make people aware of the symptoms and to change the horrific statistics pancreatic cancer has .
I do this in memory of my mum in the hope that I can stop other families having to go through the heartbreak I have .
I can’t thank Pancreatic Cancer Action enough for supporting me and helping me to make a difference xx