5+ years stories
Here you can read our 5+ years stories in full. Please click on the name of the person whose story you would like to read.
Ali Stunt | Carl |Cliff | June | Penny
I was diagnosed on 30th August, 2007 with pancreatic cancer – an adenocarcinoma in the tail of my pancreas. I was 41 and up until a month before, I did not have any recognisable symptoms – being fit & healthy (or so I thought), I exercised regularly, I did not smoke and I drank in moderation. On the 8th September, 2007 I had a distal pancreatectomy and splenectomy during which they got out all of the tumour they could see. Luckily no metastases were present and only one of my lymph nodes was affected.
I am married with 2 children who at the time of diagnosis were 14 and 10.
At the beginning, even though I was in considerable pain, it was not considered (by the collection of GPs I saw on a more or less weekly basis at my local practice) that I had anything more serious than dyspepsia or even irritable bowl syndrome. An after-hours emergency doctor (who had to give me morphine for the pain) came the closest by suggesting Pancreatitis. I do not in any way blame the GPs who had to eliminate the most obvious causes for the abdominal pain I presented with; I am not over 60, I do not smoke, I don’t have a family history of pancreatic cancer (although my father died of a brain tumour aged 50) and until 4 weeks before diagnosis I was very fit and healthy. There is currently no known test for pancreatic cancer outside CT scanning and the Ca19-9 marker test that I am aware of, although I know that research is ongoing. Even if there were, the GPs probably would not have thought it relevant to me.
A concerned locum GP (who had all the details of the previous night’s visit by the after-hours service) discussed my potential admission to the Surgical A&E department with them by telephone while I was sitting in her surgery, and between them they decided I wasn’t in enough pain to warrant their attention. A few days later I ended up in A&E (because of the pain) on a bank holiday only to be sent home with pain killers and told I needed a scan which I couldn’t have because it was a bank holiday and no-one was around to operate the machine.
I think I am one of the lucky ones. This is probably due to the fact that I persistently visited the GP surgery and because I have private health insurance through my husband’s work. The same locum GP wanted to set up an ultrasound appointment. However, on the NHS it was going to take 4 weeks before I would be seen. With the private health insurance I was able to meet the consultant surgeon within a couple of days. He admitted me to hospital straight away, I had all the tests done and was lucky enough to be operated on the following week. I don’t want to think about the possible outcome had I waited another 4 weeks for a scan.
Thanks to an excellent surgical team here in Surrey, my operation was successful. It was not until after the surgery that I discovered that less than 10% of people diagnosed with pancreatic of cancer (especially in the tail of the pancreas) can actually be operated on.
I recovered very quickly from the surgery – I was lucky not to suffer any complications, was home within 2 weeks, was out shopping with girlfriends after 4 weeks and back doing the dreaded school runs after 6 weeks (once my insurance company would let me drive again). An initial CT scan after surgery was clear and Ca 19-9 levels normal.
A week after hospital discharge I was discussing options with my consultant medical oncologist. It appeared I didn’t have many. Either I do nothing and the cancer could come back (or it might not) or I could have chemotherapy which may or may not prevent the cancer coming back. We discussed various clinical trial data – none of which gave any conclusive evidence that there is any one treatment that is particularly effective, but to me it seemed better to be doing something than doing nothing. On the advice of my medical oncologist I then embarked on 6 months of chemotherapy treatment – each cycle consisting of 3 weeks of a combination of Gemcitabine and Cisplatin once a week, every week, followed by a week off.
As predicted by my medical oncologist, I tolerated the treatment well. Very well in fact. I had nausea after the very first treatment and amazingly (especially considering the weekly doses of Cisplatin) absolutely none after that and consequently developed a huge stockpile of anti emetics (anti-sickness drugs) that were not needed. I would feel absolutely knocked out the evening after chemotherapy, like I had been run over by a truck. I would often get cold and have a headache. I coped by eating a light meal, taking a couple of paracetamol and going to bed early with a hot water bottle. By the following morning I would be feeling tired but all the ‘nasty’ side-effects experienced the night before would usually have gone and I would be up doing the school run almost as if nothing had happened! In fact the only time I experienced really nasty side-effects was when my neutrophils became too low and I had to forego the chemotherapy and instead was prescribed a G-CSF drug to stimulate the bone marrow to produce more white blood cells. This caused the most awful bone pain imaginable (not everyone suffers this I’m told) and to add insult to injury I had to self-inject the stuff for 5 days.
One of the positive things about my chemotherapy drug combination was that I didn’t lose my hair. It thinned, but not so as anyone else but me (and close friends) would notice, and still having my hair meant that in-between treatments I looked ‘normal’ – I didn’t look like a cancer patient. That for me was extremely important. Vain, I know, but it meant I could go about my business without people knowing I had cancer – a real psychological boost. From the first cycle of chemotherapy my periods stopped and a few months later I developed menopausal symptoms in the form of hot flushes. I didn’t (knowingly at least!) have any other symptoms such as mood swings. A couple of months after chemotherapy, my periods resumed again, but they are still a little erratic, so I am not sure whether the menopausal state is a temporary or permanent fixture. Luckily for me, I have already had my children and don’t desire any more.
Once the chemotherapy regime finished, I had a month’s break including a well-earned holiday in the sun for all the family. I was then referred to a clinical oncologist who prescribed a 6-week daily dose of chemo-radiotherapy. Even though I had tolerated the chemo really well, I now felt well . I had just had another clear CT scan and normal cancer markers and the thought of radiotherapy plus more chemotherapy sent me into a bit of a spin. My medical oncologist told me he thought it would be good to give it a go even though many a clinical study had little proof that adjunct radiotherapy for pancreatic cancer was at all effective – with one study actually going as far as stating that there was a detrimental effect on survival rates! I just couldn’t see the benefit and really, at that point, I did not want to go through with it.
On the advice of my oncologists and my husband threatening me with “if you don’t have this treatment I’m going to kill you” (he was joking, but only just) I did go through with the chemo-radiotherapy. I had to have a Gröschong line fitted – a tube that went into my central line via holes in my chest through which the chemo-pump containing 5-FU was attached. I hated that pump. I hated the tubes going into my chest, I hated the fact that I had the most unattractive ‘bum-bag’ in which to carry the pump clipped onto my jeans belt (to my knowledge Louis Vuitton don’t do them). Essentially I was carting around medical paraphernalia 24/7 which brought attention to my condition. After about 3 weeks, my husband started naming the pump ‘Eric’ – probably to wind me up (it worked) – I didn’t want to anthropomorphise that device, I just wanted to get rid of it. I just wanted to go back to being normal.
Initially, the radiotherapy wasn’t that bad. The staff operating the linear accelerator at the St Luke’s Cancer Centre, Guildford were absolutely fantastic; friendly, professional, they completely put me at ease. I was only on the machine for 10 minutes at a time, but it seemed longer. Trying to keep still on the machine was really the most difficult part of the process for me. What they don’t prepare you for is the waiting area where people sit in their gowns awaiting their turn on the machine. The area itself was fine, some of the patients though (generally men of pensionable age) seemed unaware that the gowns don’t cover your modesty completely and I found myself ‘exposed’ to a diverse range of men’s underwear choices, some more tasteful than others and one was worn back to front!
After about 3 weeks of treatment, I began to feel the side-effects. Extreme exhaustion was the most overriding one; I even fell asleep at the dinner table one evening (soon after, all dinner party invitations dried up). As my abdomen was receiving most of the radiation I developed a rather embarrassing side-effect; belching – it came out of nowhere and was very loud at times (very unladylike) but it amused my two boys no-end. During the last week of treatment I developed some mild ulceration to the stomach which left me unable to eat – but that, after finishing the radiotherapy and with the assistance of medication, soon cleared up. I was liberated from ‘Eric’ and promptly left for another holiday in the sun (they say vitamin D is good for you).
Six weeks after the chemo-radiotherapy I had another CT scan and more blood tests – all were normal and showed “no evidence of disease.” Relief and elation rolled into one. My clinical oncologist happily passed me back to the medical oncologist who arranged another scan at the end of November. Mercifully, both the CT scan and the blood tests came back normal. It was weird not having any more treatment. In a funny kind of way I felt comforted by the fact that while I was undergoing treatment, I was being proactive, I had weapons with which to fight any unseen cancer cells from developing tumours. Now I just have to wait it out – life being compartmentalised into the time periods in-between CT scans.
The physical scars have healed and I live my life more or less as I did before. I have been left mildly diabetic. The 20% or so of pancreas I have left is going like the clappers, ably assisted by Gliclazide (to stabilise blood sugars). I still have a small problem with peripheral neuropathy – a hang-over from the Cisplatin I’m told- which causes the ends of my fingers to go numb (and eerily white) when I am cold.
Over the course of a year, I lost 3 stone and I am now a UK size 8-10 (down from a size 12.) Since finishing the last course of treatment, my weight has stabilised. I seem to be able to eat anything, albeit in small quantities, except red meat (I don’t digest this very well) and refined sugar/sweets/chocolate/cakes (due to the diabetes.)
I admit that I am basically a strong person and most of my friends and family will attest to me having what can only be described as pig-headed stubbornness at times – sometimes not a very likeable personality trait – but it has got me through the past few years. What has also got me through is the unconditional love and support of my husband, my boys and my many dear, dear friends.
I haven’t sought alternative therapies, nor bathed in antioxidants. What I have done is put my faith in the fabulous, wonderful surgeons, oncologists and nurses I have met along the way, gritted my teeth and just got on with it.
Ali Stunt, January 2011.
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Carl was diagnosed with pancreatic cancer in 2012, aged 38
We are extremely sad to say that Carl passed away on Sunday 19th June 2017. Carl was a true gentleman, who touched so many hearts with his tireless work to help others, and will be remembered fondly by all of us at Pancreatic Cancer Action for all he did to support us, and cancer patients.
Carl tells the story, in his own words, of his experience with pancreatic cancer.
My name is Carl, I’m the one on the right, the one with ears!
I am guessing that there will be quite a lot of you reading this that have had that word said to you by a doctor.
I re-wind and re-played it in my head, over and over again, trying my very best to process, cancer! Cancer? Cancer!!!
That was September 2012, I am still trying to process it, but it does get easier to digest.
In September 2012 I would describe myself as an energetic 38 year old, went to the gym most evenings, worked full time as a web developer and used my hobby of cooking for my street food business ‘Market Wraps’ on a weekend, all was great, I was very happy.
40 is a funny age to get cancer, if you sneak into the young adults cancer ward where they have a pool table and a jukebox, I know I would probably get arrested, but on the other hand I feel I’m not ready for the exercise class that involves sat on a comfortable chair and circling your ankles just yet, but less face it, cancer at any age is rubbish I cannot really remember what happened first, I felt tired, I had pains in the right hand side under my rib cage, I had back pains, I started to itch. My GP took a urine sample, and when I went back due to going a slightly yellow colour, my Doctor sent me straight to the hospital.
It’s a good job my doctor took me seriously and my partner was pushing me to the doctors as at this point I was not talking it very seriously, I was making (bad) jokes about disappearing when stood in front of my big yellow van.
The doctors in the hospital told me not to worry, as the chances are it will be gallstone issues, this did calm me down, but at the same time on each piece of equipment that scanned me, the operators always looked concerned, and each piece of equipment seemed to get larger.
The doctors and the student doctors were doing there morning rounds, It was about the seventh day in hospital. I was the last bed they came to, I had a strange feeling something was wrong just due to the amount of student doctors.
“Do you want to stay here, or go somewhere more private?”
I guess I knew something was serious when the doctor said that. One of the problems was that I was in a busy ward that dealt with things like gallstone issues, the doctor moved on to the next ward after spending a couple of minutes saying something about a cancer called pancreatic. I was in total shock, and I am not sure what happened. I called my partner, told him.
I walked up and down the corridor, with the bottom of my t-shirt in my mouth. I was very much in a childlike state. It felt my world had fallen apart, we were half way into buying a house, and to me at that point it seemed important.
I bumped into one of the catering staff, she could see I was in distress. She was one of the regular ones on my ward that fed me so we had talked quite few times, she said I looked strong and I will be able to handle it – I bet she doesn’t know what those words meant to me.
I was told not to google “pancreatic cancer”, I did not understand why, I do now – it was about having the statistics of 3% survival, I stupidly Googled it! Not the type of information you want to read.
I asked the doctor if I “was I going to die” the Dr didn’t look hopeful and said, “We will see.”
The day after several doctors where looking at my scan results. After discussion they came into the room that my partner and I were sat in and explained I could have the whipples procedure. It is one of the biggest operations a human can have, I wasn’t guaranteed it would be completed successfully and there was still an 80% chance it [the cancer] will come back.
In the first week in October I went into the Yorkshire Cancer Centre for my operation, which took a whole day. There were complications; I had internal bleeding so I was taken back into surgery 3 days later. When I awoke from the second operation I realised the epidural (pain relief) had not worked and I felt everything. The doctors slowly pumped morphine into my system until the pain went. When I was talking about this in counselling, it is that experience is what upset me the most, not the cancer. The surgeon came to see me and told me the Whipple’s procedure had gone very well and everything looked “pristine” inside me. I was told later that my cancer was stage 3 with some spread to local lymph nodes (5 out of 12) but it had been completely removed.
Morphine! That is some crazy stuff! For me it was too much, I was climbing the walls. It made me hallucinate a lot, I didn’t like it so they gave me a less powerful drug.
I was in hospital for 4 weeks. For me it a process of one step at a time, getting out of bed, walking, eating. I went from 13 stone to 9 stone.
My nurse told me that shock would hit me when I get home, it did, sometimes I was OK, and then I would sob uncontrollably.
Cancer doesn’t just effect what is happening in your body, it effects your esteem, anxiety, looks, stress and of course your finances.
There is help out there for all of this, I found Macmillan Cancer Support very helpful.
I started chemotherapy the following January for 6 months. I was selected to go on a trial which was supposed to improve my chances of staying cancer free. I was given gemcitabine via a drip and a tablet (capecitabine) to take alongside it. This chemo is supposed to be well tolerated, but sadly I am apparently very sensitive to the chemo poisons and spent 3 days post chemo being sick. By the time I was feeling better it was generally time for the next dose. That lasted for 6 long months! People would say “wow time’s flying” but for me that wasn’t the case.
I decided to try and get better quickly, I cut my hours down at work and worked on a project for my business, and yet again, it all started to slowly get back to some normality, I was excited about the future again.
My partner and I decided to get civil partnered, it was a great magical summer, most of our friends and family came, it was lovely, a real celebration of life, in every photo everyone was smiling.
I am not sure how I could have done all this without my loving partner and family and friends.
Some friendships have changed through this period, some friendships had become stronger some have disappeared, with what has happened I try to show a bit more compassion, I guess some people just do not know what to say and cannot deal with this situation.
I have wrote a slightly comic twist on this on my blog about this.
It was late November 2013, I was rushing around as I had a meeting to sign a contract on a catering unit, this was to build an industrial kitchen to push my business further, I was very excited about this as I have worked hard and. I felt it was the next stage. The phone rang, it was my doctor’s secretary, she said my tumour marker had gone up to 90 and anything above 37 is considered abnormal and as they were concerned the cancer had come back they asked me to come in for a scan to confirm this. I put the phone down and cancelled the appointment of signing the contract of the kitchen unit.
It was my 40th birthday in London, the CT scan was booked in for the next week back in Leeds but we wanted to get away from thinking about the big C, and celebrate the big 40. It was a great weekend, the hotel upgraded us after I slyly wrote we are escaping cancer in the hotel booking section for under dietary requirement. The hotel was lovely. On my birthday my partner and I had left a bar after just one drink and went to bed. I was not feeling great, but fell asleep. At 2 am I woke up and could not tell if I was going to be sick, or I needed the loo. I don’t want to go into greater description but let’s put it this way, I bet the hotel wished they didn’t upgrade us. I was bleeding everywhere from my backside and I collapsed, an ambulance came. After more x-rays they found it had nothing to do with cancer it was yet again internal bleeding, but I was also told after a CT scan that they found a 2cm tumour on my liver.
Back in Leeds, my doctor said they would not operate on this tumour as they feel it had already spread once and so in their opinion was lurking in the background waiting to pop up in other places. So, chemotherapy started again called folfirinox. This is a combination of 3 types of chemo and I was told this was not to save my life but to prolong it. This left us both devastated for a 2nd time and in fact this hit harder than the first, as the first time there was a lot more hope.
I did get warned my hair would fall out, but I didn’t realise it would all in one day. I wish I had just shaved it all before it happened now. The 12 o’clock stage was not the best of looks.
More about this here on my blog.
I am on chemo right now. It’s been nearly 3 months and has been quite toxic, and made me quite sick, I am in bed for about 8 days and then it’s time to prepare to have more chemo as I have it once every fortnight.
More information here on my blog about this:
The sickness drive is attached to me for a week. A sickness drive is a large injection that with time mechanically pumps more anti-sickness drugs into me, and it does work.
My partner started to look at alternative ways we can deal with this cancer. He found a procedure called nano-knife but this is only done in one private hospital in London and luckily I have private medical insurance through my work. However, there were a few issues with my private healthcare, and they would not cover it, so what was decided was to have a (cheaper) different procedure that did the same thing but instead of electrifying the tumour they used heat, this was called radio-frequency ablation. It cost £2000, and not the £13000 it would of cost for the nano-knife. We went to London to Harley Street.
I did sign a contract to say something like, don’t sign a contract in the next 48 hours. I didn’t really understand why, until after the procedure.
I did feel pain, and Professor Leen did say it would feel like I have been kicked, but what he didn’t say was, by a horse! But thankfully the drugs still put a smile on my face, and the pain was fine, a couple of pain killers and it was not that bad.
I think it does involve some strong drugs because when I came around I could not stop talking – this poor nurse could not leave my room! And I felt at that point I would sign anything!
With that in mind, I decided to leave the hospital! I did ask the nurse if I could leave the room and she said I was allowed to walk down the corridor, but down the corridor was the lift and, well, I decided that I felt fine and I wanted to go shopping!
I must admit, I did get some strange looks in the supermarket, I guess this is due to wearing a night gown. The night gown look is extremely popular in Morrisons in Hunslet, Leeds, but not in Waitrose on Harley Street!
I am now waiting on the results and have another trip to London next week.
But, after my tumour marker CA19-9, had gone up to 90, it then went to 230, and once it started going in that direction I decided not to take much notice. But then I was told after the procedure in London it went down to 73 and then, as from the other day, it’s now down to 31, putting me back in the normal readings again, I’m hoping it will go back to the 7s it used to be.
Cancer as taught me a few lessons, I started this blog describing me at 38. At 40 and with the experience that cancer as given me, I am trying to get to know myself now.
I have found out I have more strength more than I thought I had, but maybe we all have that strength when faced with this.
People have described be as ‘inspirational’, I knew this was a major complement, and when people say it, I thank them, but I did not really understand what it meant. I looked it up as I know my vocabulary is not the best.
Inspirational – imparting a divine influence on the mind and soul
Well! Yet again, I still didn’t understand! So I asked my partner why people said it.
He said, he thinks it’s the way I am dealing with the situation. Now if that’s what it is, I must admit, I feel a bit of a fake.
If I could run away from it, I would. I would run and run and not look back, not the most inspirational actions, but sadly I can’t. So, personally I would recommend to find the best way to deal with it, and I think if you do this you will find that the heavy weight on your back gets a little lighter.
Dealing with it is, and probably will always be, work in progress. To help myself and hopefully others I write a blog. I try and do my bit for pancreatic cancer to bring more awareness, and I am trying to live my life as close as I can to the one I had, I still have not let go of my dreams, and I still hope one day I will sign the contract to get the kitchen built to go further with my business.
My blog is at: http://carldenning.blogspot.co.uk
Thank you for reading x
Carl, March 2014.
On July 16th 2009, I was told I had what the late Patrick Swayze’s autobiography, called “the most lethal and untreatable cancer there is”. For him that’s what it was and every day in the UK, some twenty-one people are diagnosed with this horrible disease and only one will be alive in five years.
Starting in January 2009, I suffered four bouts of slight illness each lasting about 48 hours no more than a dull ache across the top of my stomach, slight nausea and short feverish spells. I put it down to a ‘tummy bug’ and later episodes occurred during weekends away so a visit to my GP wasn’t convenient. Only in May did I arrange to see my doctor but as I felt well on the day, the doctor could only ask me to go back during, not after, the next bout. No appointment needed, I was told. Driving back from France in June, the symptoms came back and I went straight to my GP who kindly saw me ‘after hours’ and after an immediate blood test an Ultrasound scan was booked.
The NHS was to serve me well. Other than the 4-week wait for the Ultrasound scan, things moved very quickly. Only four days later Ian Beckingham (IJB), consultant surgeon at Nottingham’s Queen’s Medical Centre (QMC), carried out an endoscopy which identified a blockage in my bile duct caused by a growth in my pancreas. The stent he fitted was effective but was only a temporary measure. The growth was of more concern. A biopsy was taken for examination and a CT scan followed the same week.
Within days, Naida, my wife, and I sat with (IJB) to hear the news we expected; I had cancer and it was in my pancreas. I had read of the usual prognosis and was prepared for the worst but there was some (almost) good news. The cancer was in the head of the pancreas and I was one of the lucky 15-20% for whom the Whipple’s Procedure was possible. Her explained it, with diagrams, as a 6-8 operation, which removed part of the pancreas plus the gallbladder, bile duct, duodenum and part of the stomach. He explained the procedure, risks and possible complications and I was booked for surgery on July 29th.
It might seem odd but the operation wasn’t the only positive aspect of the consultation. From a bit of ‘googling’ I already knew that IJB was, like me, a runner, and had run to raise charity funds for research into pancreatic cancer. I made a promise that if he “got me right”, my next run would be for the same charity. Surely, no disease is more destructive and under-funded than pancreatic cancer. It gave me a worthy, and I hoped, realistic goal for recovery. So it proved to be.
Until 2009 I was a happy, lucky 67-year-old man, with a lovely family of a wife, two children and three granddaughters, enjoying
part-time work, cricket, reading, golf and French holidays. I had hardly had a day’s illness, in my life and had never smoked, drank very little, watched my weight and always kept fit by running. Now everything was to change, for a while at least. It was up to the medics and to me to make it as short an interruption as possible.
I heard later that the operation had involved a team of about ten led by IJB, had started around 10.30, and by 5.30 pm he had kindly ‘phoned Naida to reassure her that everything had gone according to plan and although sample nodes were to be tested, his impression was that they ‘looked’ OK. When the results came through, his initial view was correct. There was no evidence that the cancer had spread.
I had surprisingly little pain save for the day that I cut down on pain-killers and the epidural was found not to be working. However, I pressed so hard for a discharge that I was allowed home after six days, too quickly for my own good and a slight infection in the wound became a serious infection and I was quickly back in hospital for a further five days. The second release was more successful.
Back home again, I made slow but steady progress. For a couple of weeks the district nurse came daily to replace my wound dressing, but iron tablets to address a low blood count were soon abandoned. My appetite was very slow to return to normal but I was encouraged to eat whatever I fancied. A diet of biscuits, cakes and chocolate wasn’t healthy but it served its purpose and as my appetite returned, I very gradually put back the 30lbs I had lost, aided by the enzyme supplements prescribed to help out the half of my pancreas that I have left. They are a life-long addition to every meal or snack but have no unpleasant side-effects.
I built up fitness by walking a little further each day. More adventurously, and when nobody was looking, I carefully tried a few gentle running steps each day. I intended to be ready when I got the ‘official’ go-ahead to resume running. I got it from IJB just ten weeks after surgery and started the next day. I resumed golf around the same time.
Now, 18 months after surgery, I am virtually back to my previous health, again enjoying part-time work and all the same things as before. I suffer slight, occasional bloating after meals or heartburn before bedtime, rather loud rumblings from the stomach when I get hungry, and another minor digestive consequence, which we don’t discuss in polite company. Medically, I was told I didn’t need chemo but was invited on to a trial to compare the progress of patients who have chemo with those who don’t. I thought I was lucky to be in the latter group, though I do wonder if chemo as a kind of ‘belt and braces’ to recovery might have been a good idea. The trials do mean that I have had 3-monthly, now 6-monthly checks and scans so that any return of the cancer should be spotted quickly.
All in all, life is great, fully appreciated and enjoyed, and the next running target is in April with summer holidays and cricket to look forward to. From what I’ve heard and read I know how very lucky I am to survive pancan’s first assault but also know that none of us, particularly me, have really beaten cancer until they live long enough to die of something else.
There can be life, and good life, after a Whipple’s, if you have a brilliant surgeon, good nurses and doctors, and a caring family. I will be eternally grateful to them all. Good luck is also necessary, and perhaps, too, a bit of effort and determination on your part helps.
Cliff, February, 2011
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June Simpson was diagnosed with pancreatic cancer in 2011 with stage 4 pancreatic cancer. She was told around her 50th birthday and thought she wouldn’t see her grandchildren but 6 years on and there is no sign of the cancer spreading! She tells us her story…
June and her husband on her 50th birthday
Hi I’m June, I am married with 2 grown up sons and 2 granddaughters age 10 and 5 and I have an 8 month old grandson.
In 2011 I found a lump in my neck and I went to see my GP, he said it was just an infection.
I went back a month later he said the same.
A month after that I saw a different GP and I mentioned that about six months before that i was suffering from other symptoms: indigestion, backache, and stomach ache especially during the night. He sent me for a scan the same day it came back abnormal. He also sent me for blood tests, a CT scan, PET/CT scan and an endoscopy, all this was happening around my 50th birthday.
I was told I had stage 4 pancreatic cancer, I had secondary cancer it had spread to the lymph nodes. I had 3 lumps in my neck, chest and stomach. I was told my cancer was inoperable and all they could offer me was chemotherapy.
I had a tumour in the head and the tail of the pancreas I also had a ulcer. I was worried and upset I thought I wouldn’t see my 4 year old granddaughter growing up and my other sons children.
I attended the Queens Centre at the Castle Hill Hospital Hull my consultant, Dr. Maraveyas, is professor. I was asked to start a placebo along with chemotherapy between Aug 2011 to Nov 2011 but I got told the chemo wasn’t working so they stopped it.
I started to be in a lot of pain and tried all types of painkillers, I ended up on morphine and in Feb 2012 they put me on 2 types of chemotherapy: one intravenous and the other one oral. I had CT scans every 3 months then had radiotherapy for 7 days continuously.
I suffered with sickness, but one good thing I didn’t loose my hair it just got a bit thinner. I started receiving good results, the cancer hadn’t grown then it started reducing in size. I couldn’t believe it, I finished chemo in Jan 2013 and I’ve been having CT and MRI scans twice a year and my consultant says its good news. Though in February this year they found nodes on my lungs so he wants to keep an eye on me, hopefully it won’t be anything nasty.
On July 20th 2019 it will be 8 years since I was diagnosed.
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Penny tells the story, in her own words, of her experience with pancreatic cancer.
2012 was one of the best years of my life. I loved my career as a midwife, my kids (aged 29, 24 and 17) were happy and healthy. I was fit and well running, swimming and practising yoga regularly. I married my best friend Terry and I celebrated my 50th birthday with a trip to New York. Life really couldn’t get much better.
By Christmas, I noticed that I was particularly exhausted. I thought it might be stress related or menopausal symptoms. I was withdrawn and tired on my days off, often not getting up until midday.
By mid-February, I noticed a very vague pain on the left side of my chest. Sometimes it felt like a mild electric shock and sometimes it felt just sore. It seemed to be worse in the evening. I went to see my GP (not my usual GP as she was off long term sick) who signed me off work with a viral infection. I went back to see her every week protesting that I wasn’t any better and that without a definite diagnosis I felt guilty taking the time off work. At the same time, I was however very relieved as I was just so tired.
After a few weeks rest, I took myself back to work. One day at work the sore intermittent pain in my chest was really bothering me. I decided to take myself down to A&E to get checked out. All the tests were negative and the doctor I saw suggested time off work.
The next day I contacted a colleague who was the Consultant in charge of A&E. He wanted to run some more tests. I had a CT scan which revealed some worrying but very small lesions in my left lung. I was referred to a respiratory consultant. He was rather dismissive and said the lesions were not significant and he thought my pain might be muscular skeletal. I became very frustrated during that appointment and pointed out that my father had died of pancreatic cancer. He said it wasn’t his department. I asked him to organise some more investigations. Eventually he agreed and booked a PET scan. Two weeks later, a very sheepish respiratory consultant had to tell me I had pancreatic cancer.
The date was April 17th 2013, I will never forget it. I left that appointment in total shock but with the idea that since my dad had died 28 years ago, things must have moved on and I would be cured.
My appointment a week later with Professor Karanjia was devastating. Slowly and carefully, and with almost brutal honesty, he told me that my tumour was too advanced and involved with the major hepatic vessels and due to what appeared to be secondaries in my lung the disease had become metastatic.
I was told that I had months to live. He briefly touched on chemotherapy as a palliative option but he stressed that it would be gruelling and if my life was going to be measured in months, I may want to consider not having it. He was concerned as to the amount of pain I was in and wanted to admit me to hospital I begged to go home. We left in total shock. I was taken up to endoscopy for a planned procedure to get a sample of the tumour (still in terrible shock). Telling my family and close friends was the hardest thing I had to do, not to mention getting my head around preparing to die.
I was given an appointment for palliative care, I dreaded it. As far as I was concerned it made everything too real, and I was going to deteriorate and I was going to die. We went to the appointment and the doctor we met was very surprised at how well I looked considering my diagnosis. I had lost weight but I did still look relatively well. During that appointment I was fast tracked (my manager had already contacted him) to see the Oncologist Dr Sebastian Cummins. He too was very surprised that I looked so well. The results of the endoscopy showed a ‘typical’ type of tumour that might respond well to chemotherapy. That appointment was not all gloom and doom. I was told I had an excellent performance status (I was very fit otherwise) and that I would be a good candidate for therapy. He told us to go away, have a mini break, I was urged to try and put on some weight as I was only 8 stone and likely to lose weight during the process.
We had our mini break a long weekend in Dorset, very special and very surreal. I was so tired, so confused, so angry. I sobbed when we had to come home. Chemotherapy started in early May. I was prescribed a very aggressive regime for the chemo and was warned about the side effects. Headaches, fatigue nausea, rigors, hair loss. I had irinotecan, oxaliplatin and flurouracil (5FU). I would spend 5-6 hours on a day ward having the drugs (I now had a ‘PIC’ line, a permanent line in my arm) and then go home with a drip for 48 hours which would be removed by a community nurse.
I am not going to dwell on the side effects but just to say it was a very, very tough regime. It had twelve two week cycles, and ten days out of fourteen I could barely face the world and felt nauseous despite all the anti-sickness drugs. As time went on I became weak and frail but on the days I felt well I just made the most of it. I found going out walking helped to move the drugs out of my system. I felt like I was literally being poisoned which of course I was. I had a CT scan after six cycles which showed it was working.
After 12 cycles followed by 28 daily radiotherapy treatments combined with oral chemotherapy we had the amazing news that my tumour had become operable! We had had many emotional setbacks. My doctors were always puzzled by the lesions in my lung which diasappeared during chemo and never returned. I will never know if they were secondaries. I had to wait an agonising month after my last radiotherapy to see if they would come back.
On April 1st I had a distal pancreatectomy and had my spleen removed during six hours of surgery. The plan was for a Whipples but I was luckier than that and the operation I had, although very major was less aggressive.
Six weeks on, I have re-joined my gym this week and yesterday I swam 100 lengths again. Steady and slow but 100 just the same. I am diabetic now which I can cope with. My next check-up will be in six months’ time. It’s still sinking in. I am a very very lucky lady. My goal is to steadily get my fitness back and to return to work later this summer.
I cannot thank PCA enough for the continued support which is why I was jumped at being involved in the campaign earlier in the year. It educated so many and provided a much needed focus.