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Carole

Posted by: Carole 14 October 2019

Carole was diagnosed with operable pancreatic cancer when she was 41, in 2019 she celebrated 10 years since her diagnosis.

Carole

I was diagnosed with pancreatic cancer in November 2009 as a result of routine monitoring following a blocked bile duct earlier in the year. It was a massive shock to me and my family as I didn’t have any symptoms, and probably felt fitter and healthier than ever before. I was 41, so I was relatively young and I thought I was invincible. It all so it came as a shock, a devastating blow.

I had a Whipple's procedure in December 2009 and received chemotherapy from March to August 2010. I’m a bit of a control freak and I like action plans, tick lists and being organised. But all of a sudden it was taken away from me. Everything was out of my control because you just don’t know how your body is going to respond and deal with the treatment, and every day is different with ups and downs. So you just have to be more flexible and adaptable.

I did not read or research much before surgery, partly because of the lack of time but also as some of it can be quite scary, so my husband and I decided to just deal with each situation as it happened. I was so caught up in the momentum of hospital appointments that it wasn’t until after my surgery and starting chemo that it really sank in how very lucky I was to have the operation.

Recovering from the Whipple’s procedure

I have been through a range of emotions since surgery: I was excited by leaving intensive care and being able to mobilise quickly, but felt hampered by drains and liquid feeds; surprised by how little I ate and the lack of weight gain initially; and generally frustrated - believing I should be recovering quicker and wanting to do more than I was actually achieving. The surgery was challenging and it took longer than expected for me to get used to my new body and how it now looks and works. Read more about recovering from surgery.

I was in hospital for over five weeks and was angry that I could not be at work when there was a lot to do, and guilty that others had to take on some of my work. I felt out of touch with what was going on and lost confidence in myself and my ability. On leaving hospital I returned to work, as having that normal routine was important to me.

A stressful job and my tiredness were not very compatible, but luckily I was able to work part-time for the first few weeks, then back to full-time but over seven days so I could do a few hours each day. I was also able to work from home initially, gradually phasing in and building up my return to commuting and the working environment and ensuring this fitted in around chemotherapy and the days when I felt well. My colleagues have been very kind and supportive throughout my whole illness.

Dealing with chemotherapy

I found the chemotherapy and its side effects challenging and draining, but realise others have it far worse. Six months post chemotherapy the side effects disappeared, leaving me with more energy and the return to normality that I was seeking all along. I think I am more emotional and definitely have trouble remembering things and concentrating, but hope these improve with time.

I had a love/hate relationship with chemotherapy – part of me hoping that I would not be well enough for treatment that week but at the same time wanting it to go ahead to avoid allowing any residual rogue tumour cells to grow back.

Carole’s update two years on from her diagnosis – July 2012

It’s almost 2 years since the conclusion of my treatment; it seems to have gone by very quickly. In fact, I have moved on from the paranoia that every episode of stomach ache means that the cancer has returned, to smug conceit that everything will be OK now.

My weight is stable. I have not put back all the weight I lost post-surgery but think I look well and I eat well and healthily. I do still find eating little and often works best as I get frequent, almost daily, stomach pains and nausea (only vomit occasionally), but think this is perhaps down to eating too much in one sitting. The only foods that really give me problems are fatty, greasy ones and sometimes dairy, although since taking Creon I have noticed a big improvement. Read more about diet and pancreatic cancer. 

I exercise regularly at the gym, also swim and run. In fact since finishing chemo, I have run several races for charities and improved on both my distances and speed. I continue to work full time in my job as Managing Partner in a GP surgery. Chemo has brought on an early menopause, but this is not a huge problem – in fact may be a blessing, or will be as soon as the hot flushes finish.

Before cancer I was an ordinary 40 year old doing normal things....now I am a 40 year old doing normal things, just with a few scars and dietary adaptations to show for the intervening period.

July 2012

Carole’s story five years on from her diagnosis – August 2015

I’ve made it to the legendary 5 year milestone

Life is treating me well! I’ve made it to the legendary 5 year milestone so I'm delighted to be part of an elite club - we just need to get more members so it is not such a lonely place. I completed my Five4Five Fitness Challenges in 2014, which may not be much to many, but were important to me as an acknowledgement that I am fit, living life to the full and regaining my self-confidence.

1: I qualified as a Fitness Instructor; 2: Completed the Moonwalk; 3: Ran more than 150km in 5 & 10k races; 4: Completed the Royal Parks Half Marathon and 5: Completed a trio of triathlons.

I am at that point where you begin to wonder if it really did happen, or might have just been a dream.  I do, however, have the scars and digestive issues that help bring me back to reality. I am missing a few bits but am managing without them, and in fact the inability to put on weight makes me the envy of many. 

In myself I feel completely back to where I was before this 'inconvenience' occurred. How lucky I am to be able to say that. Bearing this in mind I am setting some new challenges for this year, including working with Pancreatic Cancer UK to help raise awareness so others can be as fortunate as me.

Like everybody I have good days and bad days, but embrace the fact that we are here for a limited time and need to enjoy and make the most of it. I hope that I demonstrate the benefits of early diagnosis but also can boost others to find the strength and courage to fight on. My life may have changed but at least I still have one and am going to make the most of it.

"There is no passion to be found playing small - in settling for a life that is less than the one you are capable of living" - Nelson Mandela

August 2015

Carole’s story 8 years on from her diagnosis

This year it will be 8 years since my diagnosis. I am still here and proof that early diagnosis saves lives – hence the importance to raise awareness.

I have had a few investigations over the past year for some recurrent pains, but nothing significant has resulted which is good news. Nutrition and fatigue seem to be the main ongoing issues, but I can do everything I used to do, although hope I appreciate it more.

I still have the scars and live with the effects of cancer every day, but I try to live life to the fullest and grab every opportunity as I realise how lucky I am to have quality of life and quality of time which is so often not the case for pancreatic cancer patients.

Accept what is, let go of what was and believe in what will be!

September 2017

Celebrating ten years of survival

Most cancer patients go through treatment yearning for the day when treatment ends, but then that day comes, and the celebrations are short lived. Your body, mind and soul are battered and bruised and that does not go away just because your treatment has ended. Instead you are now dealing with the longer-term physical and emotional effects and trying to figure out your new ‘normal’ and how that’s going to work out. 

Cancer treatment makes you feel awful physically and leaves an emotional toll; it zaps your energy and emotional reserves, has physical and mental consequences and makes you feel vulnerable. Yet emotional, psychological and spiritual concerns seem trivial when you are told you must be so relieved and happy as you are cancer-free.

I feel lucky to be alive 

After the first few years, yes I had survived cancer, but the quality of life just was not the same yet and whilst I felt happy and thankful, I was not satisfied with, but frustrated by, my progress which just intensified these guilt feelings.

I feel lucky to be alive and should therefore cherish every moment, so beat myself up when I start taking things for granted again or are not living life to the full. There is always a voice in the back of your head whispering, “you’re fine now but it can come back you know” and “why do you deserve to live when everybody else dies”. I was not prepared for the survivor’s guilt and that still stays with me to a certain extent.

I have spoken to many patients, some of whom are with us today and unfortunately many who are not. I can empathise and use my experience to, with any luck, provide hope, reassurance and energy to those on their own journeys. We can share physical symptoms, side effects and needs along with the emotional ups and downs of dealing with the day to day issues. We are all keen to raise awareness and campaign for the sake of others that may follow – to give support to patients and their families and increase funding for research into earlier diagnosis and improved treatment.

I want us to be the rule not the exception to it

Cancer has not made me who I am, or fundamentally changed me, but living with the consequences and effects of what has happened means I do have a new normal and recognition that life is good and valuable. Survivorship for me now is about continuing to do the things I used to enjoy in life and making the most of the opportunities to discover and enjoy new experiences.

I am more than delighted to still be here 10 years on, especially as I am in really good health, feeling fit and well with a full and positive life. The past stays with you but the future isn’t yet written and I intend to still be here in a further 10 years and still enjoying life. 

In the meantime, I am taking a stand to bring change and hope for the future – to make survival not just possible but the norm. I am in the lucky one per cent but want everyone else diagnosed with pancreatic cancer to be in the same position – I want us to be the rule not the exception to it. Let’s make survival possible for all not just a few.

September 2019