Patient Story: Jan

Jan was diagnosed with pancreatic cancer in March 2012 in this personal and honest account, Jan is trying to decide whether or not to have the controversial Whipples operation.

My contribution to “Patient Stories” is about my experience of trying to make up my mind what to do about the cancer diagnosis – whether to have horrendous surgery that may have life affecting side effects, carries risks of death and major complications during surgery, will involve a prolonged recovery period and cannot guarantee any extended life; or to let the cancer run its course in which case I am advised that I probably have six to twelve months left before death, although of course nothing to do with this illness can be predicted accurately. I am single, live alone and am childfree – all by choice. In making my decision therefore, I have only my own future to consider.

My medical background is complicated because in 2009 I had a series of totally disastrous NHS surgical procedures at two West London hospitals, that totally destroyed my quality of life, left me incapable of working, disabled and grotesquely facially disfigured (the photo of me above is a pre-2009 op one, taken when I was 49). They also entailed dealing with some of the most vile people I have met in my entire life. Because of inadequate medical treatment that I received at that time, I am still riddled with two catastrophic post- operative hospital borne infections, pseudomonas and klebsiella (bacterial infections) from that time, and I remain ill and unable to work. The 2009 surgical wounds still bleed and discharge, and have never healed properly. I have a number of unnecessary lifelong problems as a result of this 2009 surgery, for example visual impairment, minor neurological damage, balance problems and bone infection.

The NHS experiences that I had in 2009 were utterly horrendous. Some aspects have been publicly discussed in articles in national newspapers, on national radio and in the submission that I made to the Parliamentary Select Health Committee July 2011 Inquiry into the inadequate NHS complaints system. Obviously, as regards the issue of any further major surgery, I have been deeply affected psychologically by my horrible past experiences, even in late 2010 suffering from delayed post- traumatic stress disorder directly related to some of the things that went on in the wards of those hospitals in 2009. It really hasn’t helped that some recent minor eye surgery that I had after the cancer diagnosis turned into another disaster.

I mention my medical background because it obviously feeds into my own decision making process about whether to have the Whipple procedure surgery. But many people with a cancer diagnosis will be considering many of the same general issues about putative treatment as I am, so may find my contribution helpful in some way even though they have no such medical history themselves.

Experiencing a number of symptoms

My own on-going cancer saga started around late December 2011/early January 2012. I made all of the common errors in not realising that the symptoms were an indication of a potentially very serious problem. I didn’t know anything about pancreatic cancer at the time and in any event, like so many patients I don’t fall into the categories of patients who have any of the medically recognised possible factors: I don’t smoke, I don’t have diabetes, there is no history of pancreatic cancer amongst any of my relatives and I am not morbidly obese. I don’t seem to have any of the habits featuring in wilder media scare stories either – for example I haven’t been a great meat eater at any point in my life. Whilst I do occasionally eat stuff like salami, I don’t eat it often. I do occasionally eat processed food products like sausages and bacon but certainly not on a daily basis and I don’t eat cheap processed meat products. Years literally go by in-between my visits to fast food outlets – I can’t remember the last time I went into one. I’ve always been keen on eating fresh fruit, salad and vegetables almost every day even as a child – my extended family were keen gardeners and had allotments and used to share out their “harvests”, and in particular I’ve eaten tomatoes on an almost daily basis since I was a toddler as my granddad and uncle used to grow them in their greenhouses and I loved the taste.

The one “alternative” theory of cancer that I do believe in, is that its development may be stress related. I have had a very stressful life for over ten years, due to matters beyond my control. These include twice in a twelve month period being the victim of person on person crime by a stranger in my home environment; family rifts after the sudden death of my father; my former family home being burnt down by teenage arsonists; two close friends dying suddenly and unexpectedly; criminal harassment by a male neighbour known to the police; my stepfather dying of hospital borne infection as I was receiving emergency brain surgery because of hospital borne infection – I wasn’t even physically capable of attending his funeral, let alone offering my mother any support. I also am amongst the millions of people in the UK who have made the mistake of buying a leasehold flat and are subjected to rip off property management fees, poor services and numerous legal traps to prevent an adequate solution. The companies and freeholder dealing with the leasehold estate where I live are particularly notorious, having been investigated by the Serious Fraud Office with resulting criminal convictions and having been featured on the BBC Watchdog programme.

And of course it has been tremendously stressful dealing with all of the unnecessary iatrogenic (medical examination/treatment) damage caused to me in 2009, which abruptly ended my professional career and left me coping with unexpected and unnecessary extensive facial disfigurement.

As do most others who develop this cancer, I misinterpreted all of the first physical indications that there was potentially a very serious problem. The first symptom that I noticed was between Christmas and the New Year when I had what I wrongly assumed was bad trapped wind and indigestion, with low level discomfort in my abdomen – not actual pain, just not as normal. I wrongly assumed that it was all due to pigging out over the festive season, although nothing like it had previously happened. I hadn’t had indigestion before in my life, so was ignorant of its usual symptoms.

I have a dairy allergy for which I take prescribed Fexofenadine as necessary, but I generally avoid eating dairy unless I am eating out or I particularly want it. Over the Christmas holiday period, I had eaten it almost every day, by default, and often in the form of rich creamy foods, cheese and double cream. So I wrongly thought that the discomfort might be a minor protest from my body about that surfeit of dairy produce.

I also noticed that for around thirty six hours my midriff was solid like concrete, to the extent that one morning it even caused me difficulty in getting out of bed when I sat up and leaned forward. I wrongly put this down to Xmas weight gain and lack of exercise since the damage done to me in 2009, resolved to try to take more exercise in 2012 although the exhaustion caused by the infection makes this difficult, and took a charcoal tablet overnight to help with the “trapped wind”, which by then had been going on about forty eight hours and had not responded to over the counter indigestion remedies.

The next morning when I woke up I made it to my bathroom just in time to vomit. I didn’t understand why I was being sick; there was no apparent reason that I could fathom. The vomiting was a one off incident. All sorts of odd symptoms have happened in my body because of the long term infection from 2009, so again I attached no real significance to this, wrongly assuming that it was just some sort of low level gastric upset. The “trapped wind” seemed to clear up of its own accord and my midriff went back to normal within another twenty four hours or so. I gave it all no further consideration.

Another effect of the 2009 surgical damage is to my vision, which amongst other impairments sometimes has a green/yellow over glaze. So when a few days or so later I noticed that my reflection in my bathroom mirror looked yellow, I just put it down to the vision problem. My reflection looked normal again within twenty four hours or so, and again I gave it no more thought.

There was one more odd development but again I didn’t attach any significance to it at the time. I have always liked beetroot but ate it very sparingly, maybe half a dozen times a year if that. Suddenly, for a number of weeks, my body developed a craving for it, and I was buying it a few times a week and eating it by the entire packet at one go. I see now from the internet that beetroot contains betaine and that there is a potential link to the liver: “several preliminary studies on both rats and humans have shown betaine may protect against liver disease, particularly the build-up of fatty deposits in the liver caused by alcohol abuse, protein deficiency, or diabetes, among other causes” –http://en.wikipedia.org/wiki/Beetroot#Effects. So my body presumably knew why it wanted it. At the same time, I developed a craving for black grapes that lasted a similar period – I see from the internet that these are often recommended on alternative cancer sites as diet staples. The cravings passed a couple of weeks after the stent was fitted.

One Friday at the end of January 2012, I had some routine dental treatment. My dentist’s surgery is very near to Oxford Street, so on my way home I went into one of the large department stores to get some make up samples to try at home. The assistant gave me a sample of foundation in a shade that was distinctly yellow looking, probably formulated for East Asian type colouring. I was astounded and said, “This shade is completely wrong for me”. She insisted that it would match my facial skin tone perfectly, and mentioned that the shop had excellent lighting. Nonetheless on my persistence, she also gave me a shade picked out by me that looked to me more like my normal shade, but which she said would be far too pale and chalky for my skin tone. I was too tired to go to another store for more samples, and felt really quite disgruntled at being sent off with a useless sample of deep yellow toned foundation.

The next morning, Saturday, I woke up and found that I was distinctly yellow all over, as if I’d used a poor quality fake tanning product. My facial skin also had a different looking texture from usual – much older and dehydrated looking, as if I’d been mildly poisoned. I checked my eyeballs which were also yellow tinged, and asked a neighbour if I looked yellow – she confirmed that I did. It wasn’t my impaired vision – it was real.

So I emailed my GP Dr. Claire Gillvray, but I still wasn’t unduly concerned – at that point I had a few other symptoms like dark urine, pale stools and a bit of mild intermittent itching but assumed it was probably somehow linked to the effect of the on-going 2009 hospital borne infections or perhaps a more unusual minor digestive problem or gastric upset. I had twice in 2009 had abdominal haemorrhaging as a side effect to certain drugs prescribed to me and also had some changes in my liver caused by antibiotics, which I had been told were temporary changes. I thought that it might possibly be somehow connected to that.

But I didn’t feel any more generally unwell than I had done in the last three years, so still wasn’t too bothered. Moreover, about twenty years earlier I had shared an office with a colleague who had suddenly developed severe jaundice overnight and it turned out to be due to over indulgence in alcohol combined with a genetic problem. He had to give up alcohol and drink masses of water every day, and soon went back to a normal colour. He is still alive and active today.

So I was surprised when Claire emailed me back having read my email, saying that she was very concerned and that I needed to come in to the surgery to see her urgently. I was also taken aback by some of her questions as she examined me, such as had my palms been itching and had I had any shoulder pain or back pain? I assumed that she was asking them in order to eliminate some potential serious lurgie that might have jaundice as a symptom. But I still remained unconcerned about things, because I didn’t feel unwell. The question about itching palms secretly amused me because I thought jokingly to myself “Ooooh-er, isn’t that one of the signs of being about to turn into a werewolf? Is there a full moon this week?” Anyway, as I had none of those specific symptoms raised by her, I again wrongly assumed that it couldn’t be anything serious. I later realised of course that her questions were specifically related to potential cancer diagnosis.

Even when Claire arranged for an urgent appointment with the Royal Free Liver Unit whilst I was still at the surgery I wrongly assumed that this was only because of the possibility that if whatever was causing it wasn’t sorted out quickly, it might cause serious problems because of my already weakened infected physical state.
The Royal Free offered me immediate admittance as an in-patient for five days, so that the tests and scans could be carried out more quickly and also because they were concerned that I might develop liver infection. After my 2009 experiences, I am loathe to stay in any hospital, so decided to have the tests done on an outpatient basis even though this took a lot longer than five days – blood tests, an ultrasound scan, an MRI scan and a CT scan. All results indicated that there was a very serious problem. By the time of the follow up appointment with the hepatology consultant, Alistair O’Brien, I knew from my own internet research that pancreatic cancer was a real possibility, but as I already had a medical history of developing two types of tumour – fibroids in 1990 and a brain tumour in 2008, both of which turned out not to be malignant – if there were a tumour causing the problems I still expected it not to be malignant.

However, I specifically questioned Alistair about the possibility of cancer, saying that if necessary I’d rather prepare for the worst outcome than continue to assume that it wasn’t a major problem and later receive bad news. He told me that the size and position of the tumour as revealed by the scans meant there was more than a 90% likelihood that it was malignant, although he was unable to confirm this until further test results. He also arranged for me urgently to have a stent fitted to relieve the jaundice by ensuring that bile flowed around my body normally again.

By this stage, the full unpleasant effects of jaundice had kicked in – unbearable itching, food passing through me within less than half an hour, very frequent trips to the loo with unpleasant results throughout the day and night, feeling very unwell, brown urine, etc. I was prescribed medication to assist with most of this: Questran Light which I loathed taking and referred to as “the cup of slime” and Ursofalk, both prescribed to assist with the bile related and digestion problems.

Claire prescribed Amitriptyline to relieve the itching. When the itching first started, it was mild and occasional. I had read on the internet that some patients become suicidal because of the itching. At that time, I thought that was a bit of an over-reaction. A couple of weeks later, when it had fully kicked in as a symptom, I understood why they might be driven to such desperation. The Amitriptyline worked extremely well at relieving the itching within forty eight hours or so of my starting to take it, but it did severely disrupt my normal sleep pattern. But then, so had the pruritus.

In dealing with the itching before the Amitriptyline worked, I found that using a loofah glove, Aloe Vera gel and Eumovate cream offered the best means of some relief. The loofah glove meant that I could rub the irritating areas quite ferociously without breaking the skin and causing damage in the way that scratching with my fingernails would have done. Scrubbing away with the loofah mitt for several minutes offered some temporary relief. Using Eumovate one day and Aloe Vera gel another meant that both continued to be effective. They couldn’t offer total relief however and would take up to half an hour to work in reducing the problem. Especially in the early hours of the morning, I would wake up in agony and irritation, and have to go to my bathroom, scrub viciously at my body with the loofah glove whilst profusely swearing to myself in a most foul mouthed manner and then apply the gel or cream, then try to get back to sleep.

The stent was fitted as a day surgery procedure at the Royal Free by a very pleasant team led by Dr. Steve Pereira and Nurse Sanjay Korala. They also took samples for testing. I came off all of the jaundice related medication a short time after the stent had been fitted, as it relieved all of the symptoms. I then felt remarkably well. One of the ophthalmology doctors I have been seeing for a couple of years about the 2009 related problems commented on how extremely well I looked when I had an appointment with him a couple of weeks later, and was very surprised when I said I had recently been diagnosed with potentially terminal cancer.

The Diagnosis

Alistair phoned me at home once the results of the brushings came in, to confirm that the tumour was cancer. There appeared to be no evidence of metastasis so their preliminary analysis was that surgery was a possibility. In technical terms, the liver ultrasound scan had showed dilated interhepatic ducts and common bile duct in combination with a dilated pancreatic duct. The MRI had confirmed the double duct dilation. The likely cause was a pancreatic tumour. The CT scan had confirmed a stricture of the lower bile duct and the brushings taken during the stent fitting had shown positive adenocarcinoma. There was no evidence of large mass or metastatic disease.
Alistair referred me on to oncology consultant surgeon Charles Imber. I was surprised when during my first appointment with Charles and specialist nurse Sara Hamilton, Charles said “We don’t know yet that you have pancreatic cancer” as I had now assumed that this was what I had notwithstanding that no-one had specifically identified it as anything other than cancer. He explained that it might be bile duct cancer – cholangiocarcinoma. As I understood it, they could not know until after the surgery. Nor could they know for certain until they examined samples taken during the surgery that the cancer hadn’t spread.

By this time I’d already looked up pancreatic cancer online, and knew about the dreaded Whipple procedure, so I wasn’t surprised when I was told that this was the surgery that I would be given, if I chose to have surgery. I also knew from the internet that bile duct cancer had better survival rates. Charles asked me if I was okay for him to discuss the surgical procedure with me as some patients do not want to hear anything about it, and then went through it using a rough anatomical diagram that he drew.

I’m not a believer that there are any positive aspects of being diagnosed with any illness, especially a potentially fatal one. I am, if you like, the equivalent of Animal Farm’s Benjamin the Donkey in terms of being a cancer patient. (“He would say that God had given him a tail to keep the flies off, but that he would sooner have had no tail and no flies.”) A friend who is in long term remission from cancer disagrees, and tells me that the experience of cancer did improve his life in that it was impossibly stressful and unpleasant at the time of the cancer diagnosis and he now enjoys his re-prioritised life far more.

I certainly don’t find that the disability and disfigurement inflicted on me in 2009 improved my life’s quality or made me a better person, the way that some high profile sufferers repeatedly claim in the media about their own experience of disfigurement or disability. I’ve never found such people inspirational. I hate it if anyone describes me as “brave”.

I’m baffled by the numerous people on the internet who refer to cancer as “a gift” or “the best thing that could have happened to me”. To me, the cancer diagnosis is just another tedious life impoverishing problem, to be dealt with – it’s not an opportunity to improve the quality of my life if I survive it. I think that there is too much in the media from “inspiring” patients who “react positively” and see cancer as “a challenge”, rather than a proper balance in coverage which also accepts that it is an equally acceptable response to be miserable if you feel like it. In my view, neither approach is going to make any real difference to the final clinical outcome. I don’t accept that “the only options are to give up or fight like hell” to quote high profile cancer patient Lance Armstrong. In my view, it is quite possible to opt to have treatment but reluctantly and in an objective and dispassionate manner. And if you feel like it, why not be frankly resentful to yourself about the latest hand of cards that life is dealing you, rather than feeling obliged to be stoical and cheerful.

I hate the way that cancer patients are frequently pressurised to be “positive”. I like Barbara Ehrenreich’s approach to this sort of thinking in her book “Smile or Die”. I don’t believe that there is properly conducted clinical research that conclusively concludes that a positive attitude to illness assists physical healing, although I accept that if a patient suffers from diagnosed clinical depression that may cause complications in their recovery. I don’t believe in the psychology of “fighting” illness, especially cancer – in my view, it will progress or go into remission regardless of whether I feel that I am “battling” it. For me, “giving up” and dying is a perfectly acceptable alternative option where both options are horrible. The old adage about “well any treatment is better than the alternative, which is dying” doesn’t strike a chord with me, because I am not afraid of death and have never believed in extending life just for the sake of it if the quality of life is miserable. On the other hand, no-one likes being handed a death sentence or contemplating their own shortly upcoming mortality. And if I do decide to have the surgery, I will of course be doing the best that I can to assist my body’s physical healing via good nutrition and excellent hygiene, and by trying to move around as much as possible as soon as possible afterwards.

Making a decision about further treatment

I’m trying to make an objective, unemotional decision about the best course for me. To date, I have been incapable of making up my mind about what to do. One day I decide that I will have no treatment other than palliative treatment; the next I decide that I will go the full hog and have the surgery and chemo. It is the first time in my adult life that I have been incapable of making a decision.

There has recently been some coverage in the UK press about pancreatic cancer, including an article by an American doctor saying that a doctor friend of his who was a pancreatic cancer specialist had been diagnosed with advanced pancreatic cancer and refused all medical intervention, as he felt that it was a better choice to die quietly at home. In another article, a British doctor said that should he discover tomorrow that he had advanced, life-threatening cancer, he wouldn’t go rushing to the doctors for a heavily invasive course of medical treatment but would shut up his surgery, head to his home in the country, stock up on gin and tonic and have a jolly good time until he met his end. The reason he gave was that like most doctors, he understood that much of the medical care offered to patients who have serious, life-threatening illnesses is ultimately futile.

These choices seemed good ones to me. Then a friend of mine who is a doctor pointed out to me that both articles referred to “advanced cancer” and that I had not been diagnosed with advanced cancer, but was at a stage where medics believed that surgical intervention could offer me longer life.

Subsequent to the fitting of the stent, I feel physically well. I know that is deceptive and it cannot last forever, and without treatment the cancer will inexorably progress. An Irish friend referred me to online accounts of Irish Minister Brian Lehinan, whose pancreatic cancer was inoperable but who appears to have led a very active life for nine months until his last few weeks.

I know that I am in the 10% minority for whom surgery is possible because of a comparative early diagnosis, and I know that many others in the remaining 90% would have been delighted to have been offered that chance – any slim chance of survival. I feel guilty for feeling that in many ways, receiving the diagnosis when it was too late to do anything about it might have been a preferable outcome for me.

Then I think, well Fate has given you a chance through the early diagnosis, so have the surgery and see what happens – better to regret what you did than what you didn’t do. Then I think about the Whipple procedure itself. It looks utterly horrendous to me, and complications are not uncommon. The Royal Free has a 2% mortality rate during the surgery. In some hospitals it is as high as 5%. My own view is that in my existing weakened physical state, recovery will probably take me about six months minimum.

I look at the statistics for survival of pancreatic cancer after such surgery – they’re still very low. And I wonder if I wouldn’t rather have a few more months of relatively normal life and then a gradual decline towards death, rather than major, complex surgery, months of recovery, possible serious and unpleasant permanent after effects and no promising odds that I’ll survive a long enough period to have made it worthwhile to have gone through all of that.

Then I look at the better odds of survival for bile duct cancer. But as I currently understand it, there is no way of diagnosing which cancer it is before undergoing the Whipple procedure.

It’s like being a rat in a maze, repeatedly coming up against dead ends.

Before this diagnosis, I had always felt that if I had cancer I would have no treatment and consequently stopped having screening some years ago, on the basis that if I wasn’t going to have treatment, there was no point in knowing that I had cancer. I do have two friends who had cancer who have lived a long time after treatment – one had cervical cancer diagnosed twenty years ago and the other had Hodgkins diagnosed about thirteen years ago. But they are the exceptions to the general rule for me. Most people I know who had cancer have had what I view as horrendous treatment. Some have died during treatment without getting any remission. Others have gone into remission, but the cancer has later returned to kill them. I wonder if they truly felt that their period of remission balanced out sufficiently the time that they spent having horrendous surgery and chemotherapy and radiotherapy, to have made their choice worthwhile in the end?

Quality of life has always been an important issue for me. But we all have an in-built survival mechanism. Currently, I swing like a pendulum between the two. Tick, tock. I cannot come to any conclusion about whether the quality of life issue or the survival issue is going to be the most important for me. I even considered making my choice on the toss of a coin, but I’ve never had luck in gambling, so I’d probably be unable to trust to that either. Bah!

I feel that I’m damned if I have the surgery, and damned if I don’t.

If I don’t have surgery, then I know that once I have reached the stage where it is too late for surgical intervention, I’ll be angry with myself for not taking that chance. I also know that if I do elect to have the surgery, then I’ll be cursing myself as I am wheeled into the operating theatre, and cursing myself as I struggle to recover afterwards. If it turns out to be pancreatic cancer not bile duct cancer, I’ll be cursing myself again. If the cancer returns after a short period, I’ll be cursing the choice that I made to undergo the surgery. If the results of the post-operative histology give a poor prognosis, I’ll be cursing myself. You get the picture. Curses all around, basically.

I’m very fortunate in that I have a supportive GP and many supportive friends. The Royal Free medical team have given me excellent clinical treatment to date and are very understanding about the psychological effect on me of what happened to me in 2009. Charles was clear that the psychological reaction to a cancer diagnosis is different for every patient, and in particular that I should not feel any guilt about turning down surgery, if I decide that I don’t want it. All of the Royal Free medics have been clear that their philosophy is that patients are not to be pressurised into having any treatment. My designated nurse, Sara, is helpful, in touch by email and informative – and gives frank answers to my questions. The Royal Free consultant microbiologist Dr. Balakrishanan is in touch with me about my infection and antibiotic issues. It is not a case that I have no confidence in the Royal Free team’s ability to look after me. I have every confidence in them. But it is the nature of all cancer that so much about the eventual outcome is unpredictable, and this type of cancer particularly so.

I’ve never had the slightest interest in fictional films or factual documentaries about people dying of cancer or other disease, and that hasn’t changed. But I’ve always had a strong and dark sense of humour, which assists me I guess. I refer to myself as “a dog-end of a patient” given the existing post 2009 physical state I was in before the cancer symptoms manifested. To friends, I now refer to my cancer as “Tim” – I like the satirical TV puppet show Mongrels. As we know, pancreatic cancer is often referred to as “the silent killer”. In Mongrels, much to his chagrin psychotic neighbourhood killer badger Tim is brought into a conversation where it is discussed by his neighbours that he is known locally as “the silent killer”. I always found the clip of this hilarious (“Tim the Silent Killer” : http://www.bbc.co.uk/comedy/clips/p0096fdk/mongrels_the_silent_killer/ ), and even more so now. So if I “visualise” my cancer at all, it is as a psychotic, mangy looking comic badger with bad teeth and a sinister accent, lurking furtively in my pancreas and seeking to do unspeakably murderous things when no-one is looking. I don’t know whether “Tim” will win, or get culled by surgery.

I have been booked in for the surgery at the end of April 2012. I have told the Royal Free that I’ll let them know two weeks beforehand if I want to go ahead with it, so that if I don’t they’ll be able to offer the vacated slot to another patient. At the time of writing this, I have no idea what choice I’ll make.

Jan, April 2012