Patrick, 63 when diagnosed in 2011 with inoperable pancreatic adenocarcinoma with a liver metastasis which became operable following chemotherapy
I was a 63 year-old consultant physician when it started in 2011. I had pain in my left loin radiating to my shoulder which my GP thought was renal colic. I was referred to the renal stone clinic and a CT scan was ordered. The day after the scan I got a phone call. "There's something in your pancreas - you need a repeat CT scan with contrast." The following day I had the repeat scan. "The thing in your pancreas looks like an adenocarcinoma of the tail, but the bad news is that there is also something in your liver".
I was referred to the Royal Marsden. I was seen with my wife on Friday the same week, and after about 2 weeks of more scans and a biopsy (probably the scariest procedure that I have ever had) another outpatient appointment: "I'm afraid the biopsy has confirmed our worst fears, it's a 5.2 cm poorly differentiated adenocarcinoma infiltrating the spleen. It's not so much the primary, it is the thing in the liver that we're worried about". "Thing", that's a good word to describe it, I thought to myself. I was given one source of hope: control the disease with chemotherapy, then if it responds, to have surgery. That "if it responds" was hard to live with and was to dominate much of my thinking for the next 3 months. It's difficult to remember feelings, but I can best sum them up as a fearful numbness, mixed with a determination to survive.
They discussed options for chemotherapy and we agreed on folfirinox, which is a combination of 5FU, irinotecan and oxaliplatin. It's an intensive regime given for 3 days every two weeks, for 12 cycles. I had a "port" implanted (a device connected to a central vein which was inserted under the skin on my chest). Although it requires an operation and delays the start of chemotherapy by a few days, the port was a good choice. I was able to live pretty normally between cycles of chemotherapy. I was able to mess around with my horse, have a bath and with no dressings to worry about.
Strangely the chemotherapy was one of the most settled part of my living with the Thing. The grinding and rather unpleasant routine made me focus on what's coming in the next day or two, rather than the "if it responds" in the longer term. Folfirinox takes a long time. A typical day in the hospital, would be to arrive at 9 am with my wife, before anyone else and wait for a nurse to "access" the port. Then would come an almost endless succession of drugs and infusions and by the time I had finished, most of the other patients had gone home. Side effects of the drugs while in hospital were not too bad, though by the end of the day I simply felt "blasted" as if I had landed from a 10 hour transatlantic flight through 8 time zones. I went home with my "little friend", a bottle of 5FU, clamped to my belt, connected to an irritating, not painful needle in my chest. 2 days later, I was "disconnected", at first by a nurse, but after cycle 3 I learnt to do it myself.
The side effects were exactly as I was warned, but in my case not too bad. Day 4 or 5 after the infusions were the worst, with a few mouth ulcers. Occasional bouts of diarrhoea lasted no more than a day. Nausea was easily controlled by metoclopramide and I learnt to control the day 4 and 5 side-effects by taking the steroids for longer but at a lower dose (with the agreement of my doctors). During this time I learnt what fabulous drugs steroids are: absolute life-savers when it comes to dealing with chemo side effects.
Another side-effect was fatigue. For me, the best way to deal with this was exercise, which in my case was walking the dogs or riding my horse, for at least an hour every day. Exercise turned fatigue into a pleasant sleepiness and I slept like a baby for at least 10 hours every night. A strange side-effect was that background noises, like car engines when driving, the cooling cabinets in supermarkets when shopping, even the grinding humming of the chemo pumps while in the Day Unit, become loud and intrusive, giving a rather oppressive almost claustrophobic sensation. It is only in retrospect, when I hear that others have complained about this, that I realise that it was a genuine side-effect (called hyperacusis) which crept up on me very slowly. Like almost everyone else, I got a neuropathy (tingling and some numbness in my hands and feet) but for me this was more of a nuisance than a disability.
Three months later, after cycle 6, was crunch time, a repeat CT scan to assess the response. Good news: the primary had shrunk to 3.2 cm and the liver met to 0.6cm. I felt a sort of triumphant relief, and I remember punching the air. I was to have 3 more cycles, then surgery and 3 cycles post op. The next 3 cycles were much easier in a way, because I knew the stuff was working, but associated with a new side-effect. I noticed that when I was out with the dogs, I was getting more breathless. I didn't think much about it but the final pre-op CT scan showed multiple blood clots in the main vessels of my lungs: pulmonary emboli.
That just about did it for me. Who's going to operate on someone with multiple pulmonary emboli who's taking anticoagulants? I had almost completely lost hope as I went home armed with a large box of syringes prefilled with tinzaparin. I injected myself as soon as I got home and then once every night. By a week later, when I saw the surgeons, my breathing was almost back to normal. One of the nurses made a remark, which I will remember for the rest of my life: "my goodness, you don't look like a man whose just had 9 cycles of folfirinox!" It's true that I felt reasonably well by then, had put on 5 Kilos in weight, but rarely had any health professional said anything to me as encouraging as that! My surgeon didn't seem particularly concerned about the pulmonary emboli or the tinzaparin. "The anaesthetists will deal with them", and 2 weeks later I was wheeled in to theatre for an operation, which would last all day.
I was in Intensive care unit for 3 days and 6 days later I was home with stitches out, minus the tail of my pancreas, spleen, a piece of transverse colon and segments 4 and 5 of my liver. I had two enormous scars stretching the length and half the breadth of my abdomen. Hardly keyhole surgery, but I know from my own medical training, that the pancreas is one of the most inaccessible organs in the body. I remain eternally grateful to my surgeon who undertook such a formidable task with such courage and skill.
The next few weeks were dominated more by the effects of the pre-op chemo than the surgery. The neuropathy became a lot worse, for the first time it was painful as well as irritating. I was warned about this - something to do with the anaesthetic. The hyperacusis was worse too, accompanied by partial deafness, a roaring in the ears and occasional dizziness. Fortunately this settled quite quickly. The post-op chemo itself was hard. It started 7 weeks after the surgery and after each cycle I felt like ringing up my Key Worker and saying, "that's it! I can't take any more". Slightly more steroids than I had pre-op, encouragement from my wife, my doctors and nurses saw me through to the end. By the time I had finished I thought I deserved a medal, 12 cycles of folfirinox AND major surgery. I was pleased with myself!
The summer of 2012 was dominated by waiting for the Thing to come back. I had scans every 6 weeks, then 3 monthly to a year. No sign of it, apart for a few false alarms. Meanwhile I was back at work part time, doing research only, mainly working at home and meeting up with my group once a week. By Autumn I was almost back to normal. I still had some fatigue and even occasional nausea, which lasted at least 6 months after the last dose of folfirinox. The neuropathy continued to bug me, and I guess it will do forever. October 2013 another clear scan. "That's a very good sign" the consultant said to me and my wife, the most optimistic statement by any of my doctors. My port is scheduled for removal at the end of November.
What I have I learnt from this? Most important, the NHS has all the expertise that you need and provided you are treated at a specialist unit, there is no need for second opinions or private referral. Funding even for expensive drugs like folfirinox is not a problem. It occurred to me that I might have had preferential treatment because I am a senior doctor. This thought vanished very quickly when I saw that others at the Marsden were getting similar treatment and I had to wait like every one else in the endless queues in Outpatients. I also learnt how important psychology is. Doing things yourself, like managing one's own port makes one feel more in control. Many of the symptoms I had, particularly post-op, were frankly neurotic. Every time I was coming up to a scan, I had little pains everywhere. These always disappeared when the scan was clear! I'm not sure how anyone can deal with this. For me, the best advice was, "think short term and think positive".