Pancreatic Cancer Patient Biographies Pancreatic Cancer Patient Biographies I turned fifty in October 2005, and had foreseen that that watershed would be the toughest thing to go through that year, apart from the usual run of university teaching, marking, managing my family, converting my Ph.D research into a book... As it happens, the year turned upside down even before it began.
I was head-down over my desk at home for most of 2004, finishing and refinishing my Ph.D thesis. I have been studying the English poetry of Robert Southwell, a Renaissance scholar, Jesuit priest and poet who lived in England in secret in the last decade or two of Elizabeth I's reign, and was writing poetry just before Shakespeare began to write his. It is a fascinating study to anybody interested in Shakespeare, English history, Church history, English Catholicism, or poetry itself. You may just know one of Southwell's, 'The burning Babe', a Christmas poem of sorts, but most people don't. The book may be out in 2006/7 for anybody interested! I'm in the last stages of writing it at the moment (winter 2005/6).
I was getting unwell, putting on weight, hungry all the time. My eyes were red and gritty and painful. I felt exhausted; I even had to give up my beloved karate after I got my purple belt, and went to Pilates instead, then had to stop that.
My eating habits had changed totally - I craved sugary things, stopped wanting carbohydrates, was desperate for protein. I ate and quickly felt too bloated but without ever feeling nourished - a weird feeling, hard to describe. I did check up on the medical symptoms, but everything that covered the area mentioned 'weight-loss', and I was getting fat, so I thought it was just stress and overwork.
On the 7th March '04 I woke from dreaming that an alien had sent an electric ray into centre of my chest to a dreadful pain in the centre of my abdomen. This, as it happens, was almost exactly a year before my pancreas operation. I didn't actually get much pain of that sort, which is why I didn't go to the doctor. Like many women, I had had many symptoms of abdominal/pelvic discomfort over the years, and (also like many women) had finally earned a specialist's diagnosis of IBS, after a rather painful endoscopic biopsy in 1999 had showed nothing wrong in my guts. This had been a humiliating as well as painful experience; I had suffered months of heartburn-like pain which had not responded to the usual remedies before going private to speed up the gastroscopy/endoscopy, and to hear that I had almost nothing wrong was awful - such a waste of everybody's time and money! My GP, who is super, almost certainly proposed further investigations, and I almost certainly said no, afraid of further pain and wasted time. It seemed like a 'Fair, Fat, and Forty' gallbladder thing.
I got caught up in other things, and the symptoms relaxed into the background. When I finally realised how bad they were getting, through 2004, it was too near the handing in of my doctoral thesis to risk disruption. It really did mean a lot to me to get it off my desk and get my life back. I did a lot of ignoring in 2004, not that it would have made a lot of difference, I suspect.
But by June '04 the pain had become gently relentless. I didn't want to eat or cook or think about food at all. I felt very thirsty, often, very tired indeed, almost constantly, and now never without this gripping upper stomach pain; lying down in bed was even more uncomfortable.
By July '04 I was too sore in the abdomen to write leaning forward. I was doing eight-hour days to finish the thesis. I felt breathless when walking, flu-y all the time, and even began to lose my appetite. Waste matter was now abnormal, the urine strongly yellow and the stools like sticky mustard. Later on they became caramel-pale. I couldn't think what to report to my GP that he hadn't already seen (as I didn't know how important the changes in stools and urine were), and I couldn't afford to be ill just then as, apart from the doctorate, other family members were in need of much support. By September I was at point of collapse, and had reached dress size 26, from 16 two years earlier. I blamed myself for the weight gain, and thought that that and a steady alcohol intake in recent years were causing the problems.
Looking back, the profile of symptoms was by now complete in all the classic pancreatic cancer and diabetes symptoms, including amber urine and an interesting episode of chalk-white stools (blocked bile duct). I don't know what difference it would have made had I gone to the doctor in the summer, but had I known then what I know now, I would certainly have gone. I hope there is a way that the public can be made more aware of such symptoms, much as they now know how to look out for breast lumps or prostate problems.
On 5 November '04 I collapsed completely after eating a rich dinner while staying away from home and went to see the doctor as soon as I could stand up. Blood showed an abnormal liver function. I did some amateur research on the Net; it showed cancer as a likely diagnosis, so I was able to absorb the probability that I had cancer in my own time, without upsetting anybody else. This, in retrospect, seems to have helped me to deal with it, perhaps because I 'owned' the information, and took only as much in as my brain could cope with. I was too unwell and exhausted to feel much anyway.
Rest, oatcakes and soup saw me to the end of my teaching term. My nearly rewritten Ph.D was accepted; I organised my robes for the December Degree Congregation, and endured it in a golden-yellow daze. What with the red tassels, black velvet and yellow face, it made for a colourful photo.
I had obstructive jaundice. I watched the unfolding of events as if at an opera, each layer of engagement and response happening as if in somebody else's life. The doc wanted me to see a surgeon as soon as possible, gave me Piriton for the itching (which was utterly ineffective although it helped a little with the red eyes), and I just gave myself up to the process.
I was very, very glad of my husband's support now. The period before the formal diagnosis is a strange one and things go wrong. You need to be alert to your possible condition (the doctor won't necessarily tell you if they think you have cancer, after all, until he or she is certain), and informed enough to chase up many reports in various departments. British health services, private or otherwise, are marvellous, and everybody works their socks off, but they are not very 'joined up', department to department. My husband, doing much chasing, had to work hard not to allow his concern for me to make him aggressive; everybody wanted to help, but there is too much to do. The term 'Medical Secretary' suddenly entered our vocabulary and has not yet stopped being the most important word we know. We phoned and double-checked everything, and sometimes it was just as well.
An ERCP doctor put in a Stent to relieve the blockage in my bile duct; the itching and abnormal waste symptoms relieved immediately, and I was able to eat my Christmas dinner, and even cook most of it. He had found no stones, so I now had every reason to believe I had pancreatic cancer and that this was possibly my last Christmas. Thanks to him, though, I was able to enjoy the best one I have ever had, even when, on pulling our crackers, I got a sand-timer of the type that is more usually seen on 17th century headstones: Tempus Fugit, Memento Mori, And a Happy New Year! I have never ever seen one in a cracker before or since. Ho Ho Ho, anyway.
In January the ERCP doctor told us that I had a tumour in the head of the pancreas. It was a relief that I could 'come out' with my cancer, and share my feelings with my family at last. I was sorry for my husband, but relieved that I could now tell work what was going on.
It never occurred to us not to tell everybody, as soon as possible. We kept going over every bit of information, needing to understand as much as we could. It was a strangely peaceful time; we never railed against anything, only dealt in the bit by bit management of it and our feelings. This helped me immensely, and I think it helped my husband that I didn't show shock or horror, or go to pieces. I'd already been in pieces; the diagnosis had made me, in some ways, better.
That's how I have continued to deal with it; bits at a time. It is like eating an elephant - way too big to think about fully, and why bother? You can still only eat a bite at a time, however big something is. We deal with a medical procedure; a holiday; a family member; sending cards; visits; each thing is a separate entity to be thought through and responded to in practical ways.
In February ’05 I had more CTs and a Fine-Needle Aspiration Biopsy. Unfortunately there were some complications and the op had to be postponed again, and finally it went ahead on the 2nd March ’05. It wasn't possible to resect - the cancerous tissue was too involved with the main blood vessels; the surgeon did some clever tricks with the jejunum to give the bile a clear run, make a spare outlet in my stomach for food, and open up a site for radiation to penetrate to the tumour. The biopsy plus the material taken during the op suggested an Intraductal Papillary Mucinous Neoplasm (IPMN), a less usual and often precancerous or lethargic form of tumour, which in my case was probably turning cancerous. It was well-differentiated, and had not invaded nearby tissues, nor had it spread throughout the pancreas. A chemo+radiation treatment programme was devised to reduce its effects upon the abdominal cavity. Palliative treatment I suppose it is called.
I had great confidence in the 'team' at Liverpool, and in the nursing staff, and did exactly as I was told in recovery, trying to stay co-operative and cheerful, and pushing myself to get up and totter about as soon as I could, although I felt sore and was totally without middle body strength. I was very glad that I had kept up my daily sit-ups and press-ups until the date of the op: it helped in hauling myself around in bed. My husband stayed a few days in a hospital accommodation suite, which was great. I was glad that I had had time to buy a thick warm towelling robe for hospital because it was cold at night and sometimes there weren't enough blankets to go round. There were a lot of equipment shortages; the staff were run off their feet the whole time, but always found time to laugh and cheer somebody along. One of them called my hooded white robe 'the Polar Bear' to tease me, but she came to visit me after I had gone down a floor. The other ladies on the wards were marvellous, too, some in an earlier stage of diagnosis than I, some further down the line; it was reassuring to be able to ask about things to come.
I got the feeling that the ones that did best were generally those who accepted the advice of the medical staff, while still keeping themselves well-informed and alert to the possibilities of things going wrong. There didn't seem much specific, detailed advice, although the odd doctor could be cornered and forced to give up information about after-care - it seems useful to know that fatty food stays an hour or so longer in the stomach than non-fatty food, especially when one has a digestive management problem, not to mention two stomach outlets.
At some point I learned that my research had been accepted by a good publisher to be turned into a book, which was wonderful news. And the first day I was able to sit on a recliner chair on my back yard and listen to the birds in the warm spring garden was one of the best moments in my life so far. I can quite safely say that I have rarely if ever been quite so happy to be anywhere.
The next few months involved chemotherapy (Gemcitabine) and then radiation and chemo-therapy, all at Clatterbridge, on the Wirral, which meant that we had five weeks of 1½ hour round trips, then week-long stays in hospital for two fortnights. They were brilliant on Dee Ward and Sulby (we got moved during both fortnights) - I had side wards and basically spent the hours writing up my book in total peace and quiet, with cups of tea and meals brought at intervals. It couldn't have worked out better.
Nothing hurt except sometimes a needle wouldn't go in right, and that was more a drag than a pain. I was linked 24 hours a day to the chemo drip, which was a drag (ho ho), but it didn't do worse than make my mouth taste slimy and sickly, and the 20 minute radiation session was positively meditational (helped no doubt by the anti-sickness pill, which made me drowsy). It was a stunningly clean, fresh sort of place, and efforts had been made with the food, which was rarely execrable, and sometimes really nice. I had some very interesting visits from hospital chaplains (one of whom didn't do his homework - you know who you are, Father!). I was finally and catastrophically sick for a week after the end of the whole course, and lost a little more weight - getting down to 10½ stone for the first time in years, which was jolly nice for as long as it lasted - and then the process of getting over it began.
This is proving more complicated. The book is hard but enjoyable work; in fact I have two book contracts to fulfil now (the expression 'deadline' has never seemed so meaningful), and am returning to teaching for an hour or so a week. My friends and family want so much for me to be well that sometimes I feel almost tired out with trying, but they have all been marvellous and I am so glad of their support and understanding. Sometimes I make mortality jokes and people look shocked, and I feel awful, so I have tried to adapt my behaviour more to other people's sensitivities and capacities on the logical basis that their feelings will persist (DV) where mine will not. And I am trying to make my vacillating character face up to the hard reality that for the first time in my life I must work to stay healthy despite knowing that I cannot actually do so, and that I will not 'get better'. It feels a bit like walking up an escalator that is moving faster downwards than one can walk up it. The op pains have nearly faded, the treatment pains too, I can eat well thanks to the Creon, and can manage the diabetes well enough, with forward planning of meals and exercise. I get dreadfully tired very quickly, and have no 'second wind' now, which means planning ahead is vital, though not something we have been used to doing. But things move on.
We had a house fire in the early hours recently; the smoke alarm hadn't gone off because it was slightly in the wrong place, but I was awake at 5.00 am as I always am these days, because of blood sugar or whatever, and I heard a crackle and went to investigate, and pretty well put it out myself with the thick white 'Polar Bear'. It was terrifying, and I felt very alone and frightened until I had shouted the others up, but it was a good clean cut-off point between me and the operation; it is time to move into the next phase of things, whatever that will be. The 'Polar Bear' is gone, now, replaced with something similar in less humorous blue, and as for the rest - watch this space!
First produced 21st December 2005
Updated 21st December 2005