Anne, aged 49 when diagnosed with inoperable IPMN (intraductal papillary mucinous neoplasm) Part 2

Anne's initial experience of diagnosis and treatment

UPDATE 12 July 2006

BECOMING AN EXPERT PATIENT (from a woefully amateur one!)

Now we have got past the first stage of the journey with pancreatic cancer and into a new phase, it seemed a good time for an update. I am now officially a Patient with a significant Condition; I thought I had adjusted well to this new status after my pancreas surgery, but recent events show that I had only adjusted to the fact, not the implications, of being a cancer patient. It makes me important, in one (limited) sense, but it also makes me vulnerable in other ways, such as people tending to write me off. I've had such splendid care since the op that I simply wasn't ready for the writing-off element, and I hope that telling the story of it below will help other patients in their journey along a similar road.

Reviewing the account of my progress so far, I think it can boil down into a few basic ideas that might be of use to others embarking on a cancer trajectory of their own. If you don't feel like reading the whole story, I hope you will at least read these three points:

1. Don't hide from your doctors: they can only diagnose what is presented in surgery - and, even if it means reporting embarrassing or trivial-seeming symptoms, give the expert the chance to decide what is or isn't significant medically (on the other hand, double check things that are supposed to be being done, don't leave it all entirely up to them - and try not to mind too much if they don't always recognise what is important to you emotionally: they are only human. Thank heaven for sites like this, and MacMillan nurses!).
2. Once diagnosed, try to become as informed as possible about your own condition - not the general one, but your own, as named and described by the doctor or surgeon. Use the Web, ask others to check for you if you are unsure of what you are reading. Ask the doctor to explain terms, or use sites like this as a forum. If someone in authority hasn't seemed to take something on board that you think is important, don't be too shy to point it out clearly and as politely as possible (on the other hand, recognise that some things are not in that particular medic's field of responsibility; they might seem to be fobbing you off, but may just not be very good at explaining that to you. It happens…).
3. The latest lesson (see below) is: don't assume, or allow it to be assumed, that because you have one Big Condition, you can't develop other conditions, big or small.

These points will not change the trajectory of my inoperable pancreatic cancer, but they are important markers on the road, which suddenly took such an alarming new turn, giving me a completely new take on what it means to have that cancer, and how I as a patient interact with the professionals.

The road to recovery is rarely straight anyway. As I was finishing my post-radiation chemotherapy regime, my 'baby' sister stunned us all with the news that she had been diagnosed with an aggressive form of breast cancer and was to have one breast and the nearby lymph nodes removed. She followed me into chemo (albeit closer to home). Our family was rocked to the foundations, but she was brave and cheerful and we soldiered on along our separate cancer trajectories. I thought ruefully of the answer I had given the Liverpool surgeons to the pre-op question 'is there a history of cancer in your family?' 'Not at all', I had been able to reply. Now, three months later, two out of three siblings were in chemo.

I was recovering well from the abdominal surgery of March 2005 (a gastrojejunostomy + choledochojejunostomy - now that takes some digesting!), and from the remarkably trouble-free chemotherapy and radiation after it, and I found myself putting weight back on, and able to do more round the house. I had a wonderful week in September with my husband, rambling in the wooded hills of Tuscany. I came off painkillers completely at Christmas 2005, and dared to look forward to enjoying the spring and summer that I had missed that year, and getting stuck in to my beloved garden, which was fast becoming a fright of overgrown roses and weed-filled borders.

I set to work, hacking back shrubbery, taking on an hour a week's teaching in my university department, and accompanying my husband to Rome for a short break in January 2006. We whizzed round the usual places, as well as the Venerable English College, where the subject of my book, Robert Southwell, had taught in the late 1500s. In the chapel I looked at the same painting that he had seen before leaving for England in 1586. It was a deeply moving experience, and one that helped to put the things that had happened to me into a new perspective. I walked eight miles around the city that day! Things were looking up.

Back home, though, I felt increasingly exhausted and miserable; perhaps I'd overdone it? New year medical reviews gave good news though: the first diabetes clinic pronounced me fine and not currently at risk of complications. The CA19-9 pancreatic tumour marker had now been within normal parameters twice in a row, and the surgeons in Liverpool confirmed no signs of metastases so far. I was declared to be in a sort of remission, albeit with an in situ tumour. I wanted to feel happy but in fact I felt odd about this - concerned people wanted to know exactly where I stood, and if I said 'in remission', they reacted as if the cancer was gone. If I said the cancer was still there, they thought I was about to die. There didn't seem to be a place in between, one where I could exist happily and healthily for now, but with an underlying condition that at some point bound to deteriorate.

This either-or mindset is natural enough in non-medical people who have had no direct experience of cancer, but what I didn't anticipate was how vulnerable medical professionals can be to it as well; I had made the classic mistake of forgetting that they are human beings too. Coming up against that mindset, understandable as I suppose it is, was truly frightening, especially as it seemed to affect what medical interventions were deemed necessary for me - or, more to the point, what weren't.

So, was I better, or worse? Well, neither, for that moment. My GP gave me the best of all possible advice, cancer or no cancer: 'be glad for present things, and go and enjoy yourself'.

Determined to ignore what I took to be surgery site flare-ups due to increased activity, I worked hard in the garden and at editing the copy for my book. But I was always under the weather, belly very swollen, and my back ached. I was back on mild painkillers, which made me feel as if I had regressed into postoperative invalidity. My mindset is still stuck on the same either-or polarity that other people's seem to be - despite knowing that I am not ever going to get truly 'better', I still see any improvement as forward movement, and deterioration as a move backwards, as failure. If I could just teach myself to see both 'better' and 'iller' as progress forwards - then at least I wouldn't have to feel a failure as well as ill!

Half way through March I began to notice a palpably hard area in the near-centre of my lower abdomen, and began, uncharacteristically, to lose my appetite. Clothes began to look really strange because of my enlarged belly - perhaps I was just getting fat? I had been having blood tests all this time which seemed okay. Then the CA19-9 test marker came back slightly raised. I knew I was going to have to get used to such ups and downs without letting it panic me, and accepted it calmly, but none the less I knew that something was wrong. The eccentric digestive system that I had got used to over the last year had become a stranger again. And, in the spirit noted above of reporting even the most trivial-seeming symptoms, I was able to announce to a shrinking medical community that my stools were the usual colour, but much too narrow, and a strange new shape, as if forced out of a D-section tube. And my bladder was taking two goes to empty: something was bearing down on the tubes somewhere inside...

There were other signs: what I call the Chemical Burps - copious, unpleasant-tasting and foul-smelling expulsions of air through the stomach and throat, up till this time only an occasional reminder of my compromised digestive tract, were now my constant and most unwelcome companions, day and night. My son threatened to ban me from his car! I was exhausted, my bladder hurt, I had heartburn at night, I kept hiccupping, I couldn't sleep for the ache in my lower abdomen, I nearly fainted in the kitchen - it didn't feel much like the old pancreas thing: it felt just like being pregnant again. And surely the lump now easily palpable in my lower abdomen would have caused a much higher raise in CA19-9 than had occurred so far??...? who can say? I had a faint notion: I'd had pains in my right ovary for years - perhaps it had finally blown up, in response to all the chemo and radiation?...??

I presented to the GP surgery with a confused parcel of small, vague symptoms; various simple tests were done. I was feeling far worse than the symptoms suggested, and beginning to face the possibility that I was about to spend another precious spring in hospital. Had the shrubbery evaded the chop for yet another year? would it be me under the secateurs yet again? Curses!

And why hadn't I gone to the doctor before? It's a good question, as teachers say when they don't know the answer. Well… it had crept up on me, just an exaggerated version of symptoms with which I was all too familiar. I had set myself the task of managing my condition as best and as quietly as I could, and that's what I was trying to do. It was so hard to believe that this new set of symptoms wasn't connected with my underlying, and now life-dominating, Condition.

I swelled even more overnight and rang the surgery to ask if it might be ascites. My GP came out and had a good prod, describing what she was feeling. 'Could it be an ovarian cyst?' I quavered, hopefully. It didn't hurt much when prodded; the swelling was by now uncomfortable beyond endurance, but it didn't actually hurt too much at all. Reserving judgment on all my wild attempts at diagnosis, my GP just tried to set me up for a scan as quickly as possible, and, very unready and frightened, I was sent to hospital, to the medical assessment ward, in pursuit of one. It reminded me of one afternoon about ten years ago, when I was similarly sent panicking to hospital with a suspected, but very oddly presenting, appendicitis; another GP from the same surgery had made an inspired guess and had to talk hospital into going along with it. And here I was again, sitting on a narrow bed trying not to give way to my fear. The inevitable canula was inched painfully into veins that now fold their arms at the mere sight of a needle, and many bloods were taken, but no scan materialised through the afternoon, and I and my son waited nervously. Surely the scan was the vital thing - what time did they close up shop for the day?

My husband appeared after work, anxious to find out what was going on; at last a doctor appeared to ask me questions. Then my husband mentioned that I had pancreatic cancer. A shadow came over the sun, an arctic wind got up, and tumbleweed, figuratively speaking, bowled wildly away down the ward. I swear a coyote howled, mournfully, somewhere in the distance. The questioning stopped abruptly, and to our absolute astonishment, my husband and I began to hear the doctor telling us that he wasn't prepared to do any more assessing.

Morphine was suddenly being introduced into the canula by a jolly friendly nurse, to my surprise and fright. I had no idea what was going on - more and more morphine was being pushed, ampoule by ampoule, into my left hand, until I began to feel dizzy, and the doctor was telling us he could do nothing further for me, which meant, to my mind, that I was really about to die, while my husband sat white to the lips on my right, trying to get some sort of explanation as to why I wasn't being helped. The doctor made it plain that he wasn't prepared to touch me because of my Condition. What did he mean? I tried to seem brave and calm, but it really looked to me as if they all thought something awful was happening inside me, and were abandoning me to it. The doctor insisted I'd be better off at home. The canula was taken out, and I felt the world slipping away into a dark tunnel. I have never had to gather so much courage in my life as I did just to keep conscious and keep on top of what was being done to me. They left us alone. I cried. My husband looked at his watch. 'It's quarter past six - what time does the surgery close?' he asked. 'Half five? Six?' I hazarded. 'Back soon,' he cried, and ran, literally sprinted, across the bottom end of town to reach the surgery, where, he had good reason to hope, our GP would still be at work. She was, and quickly set up an alternative scan via gynae; I think she had been wondering about an ovarian cyst of some sort, and was already halfway to getting me into gynae anyway.

I still don't know why I was given the morphine, though. More to the point, I was a patient in clear and present need of medical assessment, as requested by my GP, and I still don't understand why having my Condition meant that I did not get it. If I'm knocked down by a bus, will I be left on a trolley for a week because A&E don't 'do' cancer cases?

I know that it did not make that much difference, in the end, whether I had a scan that day or a week and a half later, but we weren't to know that then, nor anybody else, either. Perhaps the doctor had only meant that there were other places I would be better off attending, and we, in our confusion and panic, had misunderstood. He was supposed to scan for surgery alone - but didn't I require fairly rapid surgery? But I had told him that I was due for a regular follow-up appointment next day, after all, and perhaps he reckoned that I'd be better off being seen by those who had been working on me and knew my history...

So the next day, still with no scan done, I attended the appointment, where it was confirmed to us very sympathetically that it was more likely than not to be secondaries, which had appeared so much sooner than we all hoped, despite all the surgery and treatment. My husband and I felt absolutely awful, not just for us, but for the doctor for having to tell us. It was High Noon at the Not Remotely OK Corral, alright.

Goodness, but it was confusing and upsetting though, not just for me, but for my family. Exact science simply isn't possible on a living human body: there are confusions of reportage, tests have to be waited for, access to scanning equipment is not always forthcoming, and I had already been inserted into a very capable system of palliative care that would, sooner or later, become everything to me. This now clicked into place, and I was put on constant pain relief. To them, setting up a morphine regime was sensible, based on the very real likelihood that I had secondaries and had a very difficult time ahead; they must have been here a thousand times before. Everything was sensible given what this was most likely to be: each new medical intervention seemed to picked up seamlessly from the last, repeating the assumption that I was now far down that expected cancer trajectory.

The change we sensed in some attitudes from hopeful and helpful to bleakly disappointed, and almost dismissive, was deeply disturbing to my husband and I; why couldn't I just have a scan of some basic sort before anything further was done to me, we kept asking - just to see what was actually going on? It was as if they couldn't hear me speaking: the system seemed to have clicked into some smoothly efficient Other Plan for me, and it would have been very difficult to break out of it: for all I knew, they knew something they weren't telling me, and I was about to need all that morphine. Was I really just waste-bin material now?

My GP seemed to think differently: something seemed to have told her it wasn't the Last Chance Saloon for me yet, and she got me into Ultrasound at last. My husband and I watched nervously as the doctor stared into the screen. He looked puzzled: had I been given any diagnosis other than the pancreatic tumour? No. 'It seems appropriate, in a World Cup year,' he said, 'that what I'm seeing is a football-sized ovarian cyst'. He obligingly answered our many questions, as we took on board this new information: a cyst, just like my younger sister had had a few years back! A CT a week later confirmed it. All concerned health professionals said exactly the same thing on being told about the new finding: 'it's very unusual'.

But, of course, it's only unusual if you know I am a Patient with Cancer of the Pancreas. If you're looking at the cyst qua cyst, it's just there, and requires removal. So, three weeks and three days after being thrown out of medical assessment because a surgeon wouldn't touch me, I was once again with a surgeon who seemed perfectly happy to treat me in spite of my Condition (and not before time). Ours is not to question why.

I had a very welcome hysterectomy and a decent week in hospital being well looked after on the gynae ward. It was during the first hot weather of the year (naturally), with fresh green breaking on the trees glimpsed past the grey hospital buildings. Everybody was marvellous, and I was very glad to be lump-free, and able to sleep comfortably again for the first time in weeks, but I still felt like somebody who, wandering in the sun down a pretty Spanish village street, had suddenly found that it was named Pamplona, and the bulls were out. I felt trampled and gored by the events of the last two weeks, really badly shaken. I had already been on fairly high levels of morphine and post-operative pain control required that I stay on it for a while. Despite every care by pain-control staff, the morphine was causing distressingly sinister nightmares and muscular spasms, and I wanted to be free of it, wanted my home and family, and was breaking my heart for my spring garden. The staff, no doubt fed up with me blubbing at the window, packed me off home with a clean, neat new 7" scar to add to the abdominal collection, and I tried to put it all behind me and concentrate on recuperating yet again.

Everyone was delighted and relieved: the cyst was declared to be a mucinous cystadenoma, just beginning to be borderline, but apparently caught in time, and no chemo necessary. Wonderful news. Not a happy few weeks, but no real harm done, and much good! I had lost an uncomfortable lump and the Chemical Burps overnight, and had a faster recovery phase than I had undergone after the pancreas operation, of course, because less of me was involved in the surgery, although I felt much weaker this time round, and I set myself back a week by - I think - coming down off my morphine too steeply and giving myself wretched flu-aches and diarrhoea.

The next phase is to understand why this cyst thing has happened: was it connected with the enlarged, gangrenous appendix that was removed ten years back, and with the unusual form of mucinous tumour on my pancreas? and was it related to what had happened to my younger sister? and if so - and we're talking genes now - what to do about it? I've been referred to a gene specialist, via Oncology: if somebody's opening a book, my money's on BRCA2. And the way forward appears to be regular screening for those known to be at risk. Perhaps I had better book the scanners now for next year!

Seven weeks after the op, the oncologist and surgeon were happy with my recovery, and my husband took me and my two sons to Paxos for a week. What a pleasure to be all together again! I made sure we took a place at the top of the hill, among the cedar trees, looking out over the blue straits to the mainland. Firstly, because the view is stunning and you could spend a week just sitting looking at it (which I might have had to); secondly, because it was near a quiet pool and a secluded beach; and thirdly, because the place we ate every day was at the bottom of the hill by the other beach, so I had to walk up and down that hill two or three times a day or go hungry. Meanwhile, by an amazing coincidence, the England football team also had something football-sized removed from them (i.e. a football), which didn't cause me any pain at all.

I'm deeply grateful to the health professionals who have looked after me so well, despite the brief communications failure, especially our GPs, who have been amazingly attentive and sympathetic to me and my family. I have had a sneak preview of the pain-control machinery, and am comforted to know how smoothly and quietly it works for whenever I come to need it again. I feel very much stronger now, and ready to pick up the burden of good health for as long as it is there to be carried. My book is finished and will be released upon a stunned world in the autumn, and I feel such a sense of completeness over it, and gratitude for everybody who has helped make it possible. Here's to my wonderful, beloved family, while we're on the Award Ceremony platform, and to the medical people who work in such terribly difficult circumstances to keep complicated people like me on the road, despite not being able to see round the next corner any better than I can, most of the time.

Anne
July 2006

NEW EATING HABITS

Here are some self-protective eating habits that I have developed over the year since my pancreas/bowel operation that may be of help to somebody in a similar position, although it occurs to me that Self-Help information is probably best gained by the Self, not given by other people:

FOOD THAT GETS ME THROUGH:

• oatcakes
• apples (any fruit is good, but apples seem easiest to tolerate)
• ryvita-type things
• tapioca (don't ask me why, but it really helps when I have a bad-digestion day)
• light cheese (edam-style and mozzarella are favourites)
• beetroot
• tomatoes
• olive oil
• plain greek-style yoghurt (small amount)
• plain grilled meat (moderate amounts)
• eggs
• fish
• nuts (small but frequent intake)
• chocolate (small amounts, sadly)
• dry white wine (" ")
• good bitter beer (slowly downed)
• (I don't buy 'diabetic' foods as such, except low-sugar jam and marmalade, which seems better anyway; I just keep the sugar/carb intake down as much as possible; honestly, I've never eaten so healthily, but only because I have to!)

FOOD THAT I HAVE LEARNED TO AVOID:

• potato in any quantity
• green veg/salad in any quantity (although I eat small portions a lot)
• granary bread, grainy seedy things
• intensely fatty things - cream, cheddar
• intensely sugary things, including low-fat yoghurts and 'health' cereal bars
• wind-producers like peppers, onions, garlic, beans (even large amounts of broccoli etc. can give me a deeply uncomfortable time)
• nasty, poorly cooked restaurant/pub meat (don't know the reason, but I've had too many deeply uncomfortable nights after eating pub grub not to see a connection)
• large portions of anything (my stomach seems to go into a huge painful sulk if I put anything more than fairy portions in at one time - bah! I have at last bid farewell to splendid trifles)