A Cancer Diary

Monday, 12^th June, 1995

At 10am I saw a surgeon called Mark Jones in Wythenshawe's seedy Private Patients Unit who checked me over and told me I had a malignant tumour. "Is that cancer?" I asked, naively. I had already been told the previous Wednesday that I had a 9cm long tumour in my oesophagus, but I had clung to the belief that it was certainly benign. I had avidly read what I could on my condition and the warning signal of difficulty swallowing had been with me for a while, but I hadn't thought anything of it. Now I found that I had a disease normally associated with old men - and me not even 40 yet. This is what I found on CompuServe:

"Almost all patients with cancer of the oesophagus will die of their disease, and it is reasonable for most patients to choose only therapy which will improve symptoms and quality of life. Unfortunately, even such palliative approaches may involve rather extensive therapies.

"Prognosis in all methods of treatment yield 5 year survivals of around 5%. Whether extensive treatment methods are justified given the present state of the art in the hopes of a longshot increase in survival (with altered quality of life) is a choice many patients will reject."

I have subsequently discovered that this is a rather bleak analysis, but I did not know that then. I was dazed when I left Wythenshawe Hospital. I went to the office, gave the news to the Personnel Director and to my most senior staff member, my Computer Manager, and phoned my boss, arranging to come in on Wednesday to see him. Then I left, ostensibly to take a fly-drive holiday in California with Julia. At my almost empty ex-home in Sharston I phoned up Julia with the news. I can't believe it, she said. I seemed to be disembodied, like I was inhabiting someone else's body and experiencing this nightmare at second hand. I was virtually chain-smoking and everything seemed to be rushing by. I got a call advising me of my admission date for an operation, and went back to my new home in Chorlton to meet up with Julia. We decided to cancel the holiday, partly because it didn't seem we could enjoy it the way we would have wanted to, partly to actually enjoy my new home, and partly to be able to drive up and visit mum and dad in Scotland. Julia and I held each other and cried at the shock of the misfortune that had been visited on us.

Basically this had been the chain of events leading to my visit to meet Mark Jones:

7^th April
Visit doctor complaining of chest pains, which I seemed to have had increasingly badly for some months leaving me enervated and uncomfortable. Receive antibiotics.

21^st April
Re-visit doctor and say problem still with me and may be in my stomach or throat. He suggests it could be stomach acid rising up my gullet and prescribes Omeprazole.

15^th May
Pains persist and getting worse. Doctor asks if I have a private health scheme and, when he hears that I have, rapidly recommends I contact a consultant called Dr P Jones.

31^st May
Visit Dr Jones at the Alexandra Hospital, Cheadle, and he asks me to come in as an out-patient for tests.

7^th June
Exchange contracts on my house. Have x-rays and a gastroscopy and told that I have a tumour 9cm long in my oesophagus extending into my stomach and lymph nodes which will require surgery, a couple of weeks in hospital and a couple of months off work (now there's optimism).

9^th June
Dr Lee at the Alexandra gives me an ultrasound scan and a berium meal. Tells me that my liver is OK, but that the tumour "will have to come out". Still not entirely sure if I have oesophagal cancer or not. Dr Lee seems so upbeat it sounds like I couldn't have anything too serious. How wrong could I be!

Tuesday 27^th

I enjoyed a light breakfast and lunch at home with only minor discomfort. Nothing to drink, no cigarettes, no painkillers. All my crutches gone.

Mum, dad and Julia took me to the York Suite at the Alexandra Hospital. Initially I found the attitude of the nurses unsympathetic even if the facilities seemed comparable to a good hotel. My records say that I "settled on to the suite well" and I certainly had no real fears about the op - the sooner it is over the sooner I will be better.

Mark Jones, the surgeon who will cut me up, visits me. He seems quite remote, although he cheers up when he thinks he catches a glimpse of Henley on TV. He tells me that it will not be certain if the condition is operable until he has opened me up, and confirms that he would not have been operating if I had secondary cancer. I've got myself fit and feel mentally strong, but I feel un-nerved whenever this guy tells me anything. Gnawing at the back of my mind were his comments that it was a shame that I hadn't been diagnosed six months earlier. What difference would it have made?

Mum, dad and Julia visit again and we say goodbye and, pointedly, say see you in a couple of days.

Wednesday 28^th

I thought that my last days of life would be ones where I would feel like I did when I left school, celebrating each occasion as the last time I would see so-and-so or do such-and-such. I don't feel so maudlin, and just get on with things. Death is so mundane, half a million Britons do it every year.

I meet the anaesthetist, start my fast, take my pre-med, mentally prepare myself and get wheeled into an ante-chamber of the theatre. Let's hope it goes ahead, I think.

I vaguely recall being visited by Julia and someone, and then by mum who takes a photo. Everything seems so busy around me and I feel very sleepy and have a ragingly dry throat. People seem only too willing to help me out and in an almost childlike way I learn how to get attention and get people to moisten my mouth. Did the op go ahead as planned? Who is that tall, dark-haired nurse?

Thursday 29^th

I'm very dopey and inhabit a twilight world between dreamy sleep and light wakefulness. My throat is ragingly dry. Moving is hard, but I don't need to do it much. I have pipes and wires all over me. I have to pee but can't, so I have to have a catheter inserted. I've had worse experiences but I really didn't want this. A physio comes and teaches me some exercises to do in bed and makes me breathe deeply, which is hard.

The op has gone well. I am cured of this thing, at least for now! The op took several hours and has left me with 10cm less oesophagus (out of about 20cm), about two-thirds of a stomach, 2 missing lymph nodes, a rack of broken ribs and about forty stitches in my side. Apparently the surgical wound is called a Thoracotomy and is reputedly the most painful of ops, and the surgical operation is a called a cardio-oesophagectomy with an abdominal approach.

By late afternoon I feel pretty OK. Apparently the op started at 2pm and I was wheeled into Intensive Care by 6.15pm and actually spoke at 6.30pm! Leah is the nurse who looks after me most and I get quite fond of her. I like the coy way she avoids exposing my modesty when she snips off my paper pants and bed washes me. I'm making good progress and I get wheeled off to a room of my own in what is called Progressive Care (still part of Intensive Care, but not so intensive with one nurse between two instead of one each). I'm feeling sharp and alert and go for a brief, wobbly, walk with the physio.

As I recorded later, these are the various pipes I had in me, and when they came out:

• Oxygen monitoring equipment removed Thursday
• Lung Drain removed Thursday
• ECG (5) removed Friday
• Catheter removed Saturday
• Epidural removed Saturday
• Morphine drip removed Saturday
• Stomach drain removed Sunday
• Saline drip removed Tuesday

Friday 30^th

The dark-haired nurse is called Kelly and is looking after me today. She is gorgeous. This is a good day. Pipes start coming off, I'm allowed to have a shower and have a good walk about. Somebody called Jo Hogarth comes to see me and says she was involved in the op, although in what capacity I know not. I decide to dress to impress mum, dad and Julia but by early afternoon I am tiring. The evening degenerates into acute pain as I change from an intravenous regime of morphine to pills.

Saturday 1^st

I wake up still in pain and feeling a little weepy. Coughing is agony, I discuss things with the cheery anaesthetist and we go for a better drugs regime. More pipes off! Sue, a tall, blonde nurse with a saucy manner about her, takes off my catheter.

Sunday 2^nd

The dreadful pipe from my stomach that comes out of my nose goes, and only a drip remains. The stomach drain produced a beautiful bright green bile but hurt like hell where it was stitched to my nose. Now I'm motoring! I feel strong and can concentrate better than I have been able to do since before the op. I still tire easily, though, and nice as it is for mum, dad and Julia to see me every day I can't cope with more than an hour or so of conversation. I've received dozens of cards, phone calls from all corners of the world and have had, or have scheduled, loads of visitors. Being the centre of so much attention does wonders for my resolve to recover and beat this thing!

Monday 3^rd

I start drinking water. Will my guts show the same resolution as the rest of my body and my mind? Off to a new room in the Chester Suite, where I drink tea! Half a cup an hour I'm allowed. Is the end of the drips in sight? Injections to arm to remove blood, to stomach to prevent clotting and to my bum to reduce pain, plus pills every six hours. The nurses are friendly but don't seem as efficient as the nurses in Intensive Care except for an attractive, dark-haired, busty nurse called Anita. I keep a list of the drugs I've been given. They include: Voltarol/Diclofenac (injection and pills), Tengesic pills (which require a name check and two nurses to be present when I take them), Temazepam, Morphine infusion, Bupinacaine, Prochloxrpglazine, Ketorolac, Lorazepan, Catteplain, Gestusine, Codefusine and a Disaline drip.

Tuesday 4^th

Drip removed - a three inch long pipe running along a vein near my heart. No pipes! I'm eating soup and ice cream. I decide to treat myself to a new computer and place an order for a Gateway 2000 which will be delivered in a couple of weeks.

Wednesday 5^th

Only wake up once in the night and manage to get back to sleep again OK, but sleeping remains problematic. First crap. Very runny affair. I'm fortunate to have been in hospital for the Wimbledon fortnight; it provides an ideal entertainment for bed rest. You can either find yourself completely absorbed in a match, or drifting off to sleep without really missing anything earth-shattering.

A dietician visits me. The inappropriately full figure of Chris Saint. She tells me:

• Drink after, not with, meals
• Eat every 2-3 hours
• Be careful about eating bread initially
• Add glucose polymer to everything for a few days
• Plenty of O.J.
• Use other supplements like Build Up, Fresubin or Polycal
• Avoid pickles and spicy foods
• No more than 6 coffees a day
• Sit upright after eating for 2 hours
• Avoid eating less than 2 hours before sleeping
• Eat slowly to avoid taking down gas
• Avoid fizzy drinks
• I will feel full 20 minutes after eating, not at the time

Thursday 6^th

First proper food - scrambled eggs for breakfast with tea and orange juice. It tastes wonderful!. No more jabs now, and my stitches have been taken out. I really feel remarkably fit, although I do get the odd warning sign that things are not quite what they were.

Friday 7^th

I'm allowed home. Mark tells me I will see him in about a month's time to see what happens next. Depressingly it sounds like further treatment will be required - probably chemo. I had really thought that this might be the end of it all. No such luck. I'm meant to wear surgical stockings for another month but Mark doesn't think I need them for more than a week. I'm to take Voltarol on prescription and Paracetomol as required for pain relief. Mark is impressed with my progress, but reminds me that my op is every bit as major as brain or heart surgery and I must take things easily.

The journey home really takes it out of me and I am totally unprepared for all the noise and bustle of home with mum, dad, Darryl, Bridge, Russ and Julia all there. I rapidly feel tired and fragile and the only real company I feel relaxed with is Julia's. The painkillers are not as strong as the ones I have had in hospital and the pain level has gone up again, particularly if I cough or sneeze. The hospital now seems like a perfect oasis and I almost feel like I want to go back to all those sympathetic nurses where I am surrounded by ill people and quiet.

It is nice to be home though, really.

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Wednesday, 12^th June 1996

Well, it's a year since my diagnosis was confirmed and I'm still alive. The consensus seems to be that 18 months survival after surgery is average, and there's an average 5-20% chance of surviving five years. Well, who wants to be average?

Since the op I have had no further treatment, just a six-monthly x-ray. I'm surprised there wasn't any chemo or more extensive tests, but I've learnt there are many views on how to treat oesophageal (or esophogeal, as the Americans spell it) cancer. I've only recently given up on taking diclofenac sodium and now take no medication at all. I try not to dwell on matters of mortality, although I think I've got some insight into what it must be like on Death Row.

Life's pretty much back to normal in most respects. Obviously I'm missing a few bits. It took a hell of a long time to develop my stamina and resistance to stress again, and I had a couple of embarrassing moments in the early days when I crapped myself, due to the damage surgery caused to a bit called the vagus nerve, apparently. I still get tired easily, occasionally have difficulty swallowing, periodically have problems with my guts (often known as dumping syndrome) and I have some spooky pains, but I play squash, I've traveled the world in this last year, work full-time (my company has been incredibly supportive), ski, scuba dive, watch Manchester City lose and Arsenal win, eat what I want (albeit in reduced portions), enjoy a good wine or a warm pint! Life's pretty damn good.

Getting info on my cancer has been extremely difficult. Where would I have been without the Neil Cliffe Cancer Care Centre, David Kirby's  Oesophageal Patients Association and Bacup (Now MacMillan Cancer support)? Not to mention all my superb friends, my family, my surgeon and my girlfriend, Julia.  I also get excellent support from the Esophageal Cancer listserve on the Internet, found thanks to Cathy's EC cafe (now hosted by Marc Wolfgram) and populated by such indefatigable survivors and supporters as Uncle Al Levenson who started it all, the eponymous Cathy, George Thompson and his jokes and over 200 other lurkers or active contributors. You can access the archives of the Listserv or can subscribe by sending an e-mail here with the subject line blank and in the body of the message writing: subscribe EC-Group Firstname lastname. Other useful sources of information on cancer of the oesophagus include Christies, Medscape and Oncolink.

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Friday, 14^th July, 1999

So, it's four years since Mark Jones - a man who I thought would be my nemesis, but who I now look on as a family friend - introduced me to the 'C' word and changed my life forever. We met up yesterday for my four year check-up: a shrewd inspection of an x-ray, a prodding at my liver and lymph nodes and some variously general and specific questions. Since we last met up Mark has passed his yachtmaster and I've been made redundant for the second time in two years and relocated back to London (or Twickenham to be precise) to work for Pfizer, another healthcare company. Mark's handiwork has proved to be phenomenal in that he has filleted me yet left me functioning pretty much as I did before this disease tried to throttle me - for anyone else facing this surgery the one piece of advice I would give is to ensure that you do not trust your fate to someone ill-experienced in this type of operation, the so-called "General Surgeon".

Last visit Mark told me "we'd turned a corner" and confided - and he said he wouldn't have told me previously - that Oesophageal Cancer tended to be particularly aggresive in people as young as me. I don't really think he expected us to be sitting together facing each other four years on from that first meeting.

I think I've been remarkably lucky. I'm still alive. In this last year I've lost a couple of friends I got to know through this disease, John Smith and Diane Gubik, each of whom had got about this far. As they say in Tralfamodore, "So it goes".

From a film with many memorable lines, the lines that close the voiceover version of Bladerunner seem strangely apt:

"Gaff had been there, and let her live. Four years, he figured. He was wrong. Tyrell had told me Rachael was special: no termination date. I didn't know how long we had together, who does?".

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September 2000

After a blood test from my GP and a final visit to my surgeon, Mark, five years after my initial treatment, I'm officially cured.  I doubt that I'll ever quite recover the robustness I once had, but it's a minor quibble. No point holding out for the sympathy vote.

And why should I? Mark again reminded me of my good fortune and wished me well. I've enjoyed his laconic friendship. "It's been good to know you", he said.  Bloody good to know you, too - you saved my life!

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Postscript

I hope my experience helps other people to understand about this disease, helps them to find hope when the future looks so bleak, and to find reasons to be cheerful. I have now fully recovered from my brush with cancer, and my life has blossomed and grown since - I have two lovely children to show for it.

My own survival is not as uncommon as I had once thought. Since I first published my diary I have been contacted by many, many people who have had this disease and have recovered. One of the stories I have received is that of Des Nicholas, whose wife had oesophageal cancer; Here is his (and her) story. And for a little light relief I recommend Haldane's "Cancer's A Funny Thing".

I apologise for having an advert on this page, but the people who click on it help me fund this web site and keep this page going.