Happy Thanksgiving 2007

Kath and I have just spent a very pleasant Thanksgiving. We are in Kentucky, our first ever visit to the state. I imagined as we were traveling south that we would have one of those shirtsleeve holidays where the fall sun is still strong and the leaves are on the trees. Not so, it’s very cold, actually colder than Boston is right now. The grass is crunchy underfoot in the mornings and the cars thickly filmed with frost. Still, that’s how Thanksgiving is supposed to be when you come from New England so it feels comfortable and homey.
We’re here with good friends. Diane and Tom, who moved here with their girls from Lexington MA just over a year ago, Simon and Gill who live near Boston, and Ned, who you all know. Yes, Ned is here too. I went for my regular three-monthly scan a couple of weeks ago and received the all clear once more. In fact, the surgeon noted my new friendship with Ned in his clinical notes – “15 months NED” he wrote, underlined it with a flourish, and looked up at me and grinned broadly. I believe he’s quite proud that he introduced us and that our friendship has matured over the months. Well, I’m pleased about it as well.
Thanksgiving day was delightful. Diane’s mum, and her sister Megan and family joined us to make it a warm friends and family affair. We had the traditional turkey dinner, which I was able to do far more justice to this year than last. I even had a small dessert, although I knew it would double me over with stomach cramps for a while, and it did, but it was pumpkin gelato pie so well worth a short period of torture.
So I’m doing well. I haven’t posted to the blog for a long while, so I thought I’d provide a quick update. This has proved a very positive year for Kath and me. This is our fifth trip away from home this year – cancer can be a very motivating disease. We were in Costa Rica in January, the UK in March, Canada and Alaska in April/May, the UK and Cyprus in October, and now in Kentucky. Seize the day.
The UK/Cyprus vacation was very special. I turned sixty in October and we had planned a visit to Cyprus with our younger son Kevin to coincide with my birthday. Kevin owns a property there. Till the last minute I thought that our other son Chris and his family were going to be unable to join us, but the day before we left he said that they were going to join us as well. So it was a very special week in the sun with kids and grandkids all around. For my birthday, they organized a day trip on a boat up the north coast of Cyprus, swimming in the warm waters of the Mediterranean, lunch on board, brandy sours, surrounded by family. It was a day to remember.
I am a very lucky man, with much to be thankful for.

Doubting a Friend

What sort of person doubts the allegiance of a friend? My friend Ned has been with me day and night since my operation. He has given not the slightest indication that he wants to leave. Yet, here I am, wondering if he’s going to stick around. Worrying that he might want to move on.
I went for my three monthly check-up today. Note that I said “check-up” and not “scan”. Three months ago I had a serious conversation with my ologists about the need for continued CT scans of my body to look for signs of returning cancer. They discussed with me that for my particular cancer, and, more importantly, my “pathologically complete response” to the treatment and surgery, there was no need to continue to have scans every three months after the second one; I could go onto a six-monthly schedule. The statistics indicated that there was no difference in survival rates between three- and six-monthly scans in cases like mine. The doctors acknowledged that many people needed the emotional support of frequent radiographic intrusion into the body, but that medically it was unnecessary. Unnecessary in time, cost, medical resources and more importantly, why submit yourself to yet more radiation when you’ve already had a pretty good internal toasting with the stuff during treatment. Of course, I digested the information and nodded sagely in agreement. I trust these people with my life. Well, I did last year and that worked out fine, so why stop now?
Fast forward three months to today’s check-up. As the day of the check-up gets closer, my little black cloud of apprehension starts to grow. Here go the dark thought processes. Statistics, schmatistics. What if it’s back? It could be in there, somewhere, growing, spreading its nasty little tentacles into places they shouldn’t be, sniggering to itself because I just don’t know. Nasty little cancer cell cruising around in the bloodstream, or in the lymph ducts, managing to avoid the radiation, and hardy enough to take a severe Sopranos-style beating from the chemo, but not expire. A Hercules among cancer cells. Once the chemo stops, it picks itself up, dusts itself off and goes off looking for a nice warm organ to set up home and raise a family. Hangs a sign on the outside of the nascent tumor – “Dunroamin”. As you can see, all of the sensible conversational points of three months ago were for nought.
So I faced off with both of my ologists – the surgeon and the chemist – and told them straight that I would prefer to have a scan. Now, if you please. My tones were measured and calm. My voice was steady and low. But they both looked into the windows of my eyes and saw the emotional melt-down going on inside, The petulant little boy in there, jumping up and down and screaming “I want one, I want one, I want one” and that he wasn’t going to stop until he got one. Hey, it worked when I was six.
It works when you’re sixty (or nearly) as well, it seems. They both smiled thinly, and said “Certainly, if you want one, you can have one.’ I had to do a deal though. If I had one now, I’d definitely move onto a six-monthly routine from now on. “And no sulking or tantrums in August” is the unspoken message. Ok, doc, anything you say, just gimme that scan.
So next week I get another dose of radiation poisoning. And I’m happy to get it. That is, until I think of poor old Ned. I’ve laid bare my doubts about his integrity to the world. I obviously don’t trust him to stick around. How could I be so fickle? He’s never let me down at all and yet… We’ll have to have a long talk, Ned and me. I need to reassure him in the same way that I need to be reassured. Of course I like you, Ned. Of course I trust you as well. But our relationship is still quite new. I’ll have this scan and then I’ll feel so much better about us. I hope you understand.

"Life is good" - Phrase on a rather large t-shirt

The introduction to this blog states that April 25th 2006 is a day that will live in infirmary. Yes, it’s meant to be punny. But for me, and I think for most cancer survivors, the day that you are diagnosed with cancer is seared into your memory. It’s an absolute time-stopping shock, even if, as in my case, you pretty much already suspect the worst. It’s an involuntary tightening of your hand around your wife’s hand when the words are spoken. It’s a sudden inability to process anything more that the doctor is saying. The lips are moving, he’s making sounds, but he just told me I have cancer and the word is just bouncing around in my consciousness. I don’t remember leaving the medical center, driving home, what we did the rest of the day. I just remember the moment, as if it were a minute ago.

But it’s a year ago today. How about that? What a year it’s been. I’ve been poisoned, burned, and cut. I’ve seen chemically-induced birds fly around the intensive care room. I’ve stood naked in the bathroom while two very attractive young nurses washed me from head to toe. Every man’s fantasy, right? I’ve been promoted from patient to survivor. It didn’t come with a pay rise, because it’s priceless. And it changes you. In both negative and positive ways. Nice balance there.

The negatives.
I’ve always been the archetype of the “live to eat” lifestyle. Suddenly, I can’t eat to save my life. Well, I can actually but my intake has gone down dramatically. If I overeat, I suffer. And overeating is so easy to do. More than a cup and a half of food at a single sitting, and I suffer from stomach cramps and frequent urgent bathroom visits. It’s the same with sugary foods. I used to be able to inhale a Milky Way and it wouldn’t touch the sides as it went down, but now anything like that just turns me over.
Talking of not touching the sides, my food still gets stuck quite regularly. I dilate every day, first thing in the morning. It’s a great way to start the day – not. But food still gets stuck if I don’t chew everything well.
I can’t drink beer properly because of the sugar thing. And of course that coincides with just when they open the Boston Beer Company restaurant down the road from my house. Oh how I’ve dreamed for this day for the last eighteen years that I’ve been in this country of Bud Lite, Miller Lite, Coors Lite, Crap Lite. And now my dreams have come true and I find myself out with Kath who is quaffing yards of ale while I sit there nursing my measly half pint of Randy Stoat Stout and asking her if she would like to finish it. “Ooh, yesh pleash”, she says.
I need to sleep sitting up. Otherwise my reconfigured innards regurgitate bile up into my throat. And I used to think heartburn was bad, this stuff is lethal.

The positives.
Kath and I are much closer, except when she’s quaffing yards of ale. Sure, we still snap at each other regularly over the smallest grievance, but we’ve always done that and it proves that our lives have settled back into a far more normal routine. But we’re closer than ever before, and we were never too distant. We take more time for each other. My love for this woman who looked after me last year is boundless.

I’m slim. You cannot imagine how happy I am at losing all the weight that I have over the year. It’s because of all the negatives related to food of course, so even they have some positives. The attic is now weighed down with an accumulation of fat clothes collected over the last 40 years and I’m spending a happy fortune on medium instead of extra large.

Because of the sitting up sleeping thing, we bought a new bed, a bendy tempurpedic. Both the top and the bottom of the bed go up. Having the bottom go up avoids turning the bed into a ski slope and having me suddenly shoot out of the bottom and across the room in the middle of the night. (The surgeon did advise me to sew velcro on my jammies but this is a far better option. Also less painful as I don’t wear jammies. But you didn’t want to know that, so forget I said it. Anyway, this is the best bed ever, like sleeping on a bank of recently worn, warm rugby socks, minus the pong. (Sleeping on a cloud seems so clichéd somehow!). Mundane perhaps, but the bed is so pleasant that it definitely warrants a mention in the “positives of cancer” charts.

Lastly, and most importantly, I’m happy to be alive, far more so than I was before. I took being alive for granted, because I’ve been alive all my life. A brush with the cold feathers of possible mortality makes you look at the world a little differently. It makes you realize that you won’t be in it forever. I don’t believe I’ll miss it when the time actually comes, but I know that before that time comes, the thought of not experiencing life in the future is daunting. That sounds depressing, but believe me, I’m happier to be alive now than ever I was a year and a day ago. As some of my attic-dwelling t-shirts say – “life is good”.

Are you serious?

What better time to write a blog entry when bored out of ones skull at thirty-something thousand feet over the mid-west USA? I’m off with a work colleague to Los Angeles to a conference on software user assistance. I’m only just back from twelve days in the UK on vacation visiting family so I’m racking up the air miles this month. Not getting a great deal of work done though.
So how am I? Fine and dandy actually. I’m still doing what have come to be known as “plunges” every day – self-dilations to the uninitiated. Each morning, before I do anything else – well, after a pee and a hand wash actually, but I won’t mention that – I take the pastel blue silicone snake and whack it down my throat to make sure the stomophagus remains open. It’s become almost second nature now. It’s still not pleasant, it never will be, but eminently bearable. I do still get food stuck every now and again, but it’s gluttony that does it. My mum’s words still echo in my head – “chew your food 32 times before you swallow it.” I wonder where she got 32 from? Probably the same place from where she exhorted me to make sure I wore clean underwear “in case you get run over”. I swear she was more concerned with what the hospital staff thought of her housekeeping than me lying broken and bleeding from my interaction with a No. 39 bus.
As I said, I’ve just been to the UK for a round of family visits. It was a great trip, mostly in the bucolic Dorset countryside, surrounded by sheep, cows, and relatives. It was mother’s day (UK date) while we were there and we went out for dinner with mother-in-law. That was astonishingly spooky for me as we went to the restaurant where I suffered the very first, very frightening episode of not being able to swallow my food. I’m a pretty pragmatic type, but I found going there a bit haunting. At least we didn’t sit at the same table, or even in the same room, so the strange feelings didn’t last too long. And I could swallow this time.
I took the chance to visit with relatives, a couple of which I hadn’t seen for over 45 years. It’s surprising how a brush with one’s own mortality makes you reflect on your life and brings up memories that trigger a need to contact people again. It was great to see my aunt Cis again, in her eighties and sharp as a tack. My cousin Sue who, when I was ten, I was convinced that I would marry. We visited our sons and their families and partook of two huge slices of grandchildren’s love. And we decided that we have been fully accepted into the family of our youngest son’s in-laws. We must have been. Over supper at their home, his mum-in-law suddenly asked if she could see my operation scars. “Are you serious?” says I. “Yes” says she. “Surely not” says everyone else. But I had a couple of glasses of a nice cabernet/shiraz inside me (and I guess so did she) so up went the t-shirt. Acceptance is wonderful. (I think she really wanted to scan my new slimmer Adonis-like body.)
So here I am now, still at thirty-something feet over still the mid-west. What a huge country this is. There is an empty seat between me and work colleague. I like to think that it’s actually taken by Ned, my constant traveling companion.

Ned's moving in.

I met Ned again last week. You know, the old farmer dude that I met three months ago when I had my post-op checkup to see if the beast was really dead. Let me tell you about it.
Last Thursday I went in for another checkup. The routine was a bit different this time – I didn’t need to drink two gallons of spackle, just jump up on the table, get hooked up to the contrast injector thingy, and have a quick scan of my chest. I went into the control room after to take a look at the slices of my body. Fascinating stuff, like a personalized monochrome “Body Worlds 2”.
A two hour wait then to see the oncologist – the surgeon cancelled his appointment as he is out of town “on business”. In Cancun. Yeah, right.
Saw the onc who once more pronounced pride in his work and said I looked great, but he didn’t have the results and he’d call them in later on. Well, you can imagine what that’s like, waiting around all day for results. I feel great and have lost a lot of weight due to the operation so I guess I look a lot better and healthier than I have since Pontius was a pilot. Even so, as the scan date gets closer in the preceding weeks, the little dark cloud of anxiety builds up into a storm.
Kath and I haven’t just been waiting around for the last three months though. No, we’ve been intrepid. We decided to take a vacation to Central America in January, to Costa Rica. It was my idea; the increased awareness of your mortality and your possible proximity to it does make you a bit “carpe diem”, and I’ve always wanted to go there. Well, more to South America actually, but you have to offset the carpe diem feeling with a quick check of your bank balance. So off to Costa Rica we went for a week in January on an adventure holiday.
It was fabulous. We spent the first four days in a reservation in the rain forest in a cabana with no electricity and solar heated hot water. We went out each day - hiking, or horse-riding, or tree-climbing, or rappelling down waterfalls (the ultimate wet T-shirt contest). The evenings were spent with others in the group eating by candlelight and looking at the lightening bugs in the trees around the camp – so many they were like Christmas lights. We then spent a couple of days in a beach hotel, where we did a bit more hiking, and then the last day was a four-hour white water rafting trip. We arrived back to Boston tired but happy and not a little proud of ourselves.
The trip took my mind off the impending scan at least for a while but this time for some reason the wait was worse than the first time; the anxiety was doing a number on me. So waiting around for the results was purgatory.
I also had a physical exam that afternoon so that took my mind off things for a while. Having the physical on the same day as my check-up was pure coincidence. I booked it up last November, thinking that as I’ve had all these eminent guys looking just at my esophagus and surrounding superstructure, it might be a good idea to have my doc take a peek at the rest of me to see if any other bits are wearing out. Once more, no problems, but now I need to get a colonoscopy and have a dermatologist check my skin over. These people just feed each other work.
Off I went home to await the results. By the time I got home, I didn’t have too long to wait. The phone went, I picked it up, there was the onc, and he told me the good news – still no evidence of disease. Wouldn’t you know it, just at that moment my great pal Ned walks into the house; straw sticking out of his wellies, a slight whiff of earthy manure about his person, a very homey and comforting presence. “Afternoon Rog” he says. “Glad to see you’re still doing well.” “I’ve been wondering, since I saw you three months ago, what you and Kath would think of me sticking around here for a while.”
“Ned”, says I, “you can stay as long as you like.”

I'm Developing an Inner Awareness

My self-dilations have not been as successful as I'd hoped. I have certainly become more used to thrusting this wobbly tube down my throat each day and have largely overcome the gag reflex. However, each time I do it I reach the point of restriction in my throat and I have always been a bit tentative at that point as to how hard to push. I've got this vision of pushing too hard and suddenly separating my stomach from its new home in my chest and have it scuttle on down to my belly where it really feels at home. So while I've kept the swallowing difficulties at bay for longer than usual, they reached a point at which I needed to do something about it.

I've been emailing my ologist at intervals, so I asked if I could come in for a professional dilation, only this time I'd like to stay awake for the procedure so I could get a feel for how hard I should push. "Sure", he responded. I'm not sure if emails can have a sort if incredulous tone of voice, but this one certainly seemed to.

In I went on Wednesday to have it done. The anesthesiologist was also rather amazed at the whole awake thing - I don't think they have many awake patients - but she was rather excited by the prospect of standing ready to put me out if I felt uncomfortable at any time. "Just put your hand up and I'll send you to sleep immediately" she said. So from that point on, I felt like the guy at the auction who makes the slightest movement with his hand and ends up owning a Canaletto and owing three million dollars to Donald Trump.

She gave me a shot of something that made me feel really high, but lucid - I'd love to get some more actually - and they wheeled me into the OR. There are TV screens all around and they make sure to line one up so I can see it. In walks the king, he grabs an endoscope and promptly whacks it down my throat. Fascinating. So that's what I look like from the inside top end. Actually pretty similar to the inside lower end. Except for the entrance.

He peered around all over the place, explaining what I could see as he went. "There's the esophagus, there's the anastomosis, now we're in the stomach. There's the pylorus, and the intestine. There's a... What's that doing in here? That's not right."

He then withdraws the endoscope and picks up a bougie. "This is the same size as yours" he says. Funny, it looks at least twice the size of the one I have. He proceeds to then thrust it down my throat and when he reaches the stricture gently but firmly pushes through it. It's that easy. Now he picks up another one. "This one is a bit larger" he says. A bit! I'll be able to write advice columns to the "Overcoming gag reflex" forum after this one. But, sure enough, it goes down, pushes through the stricture, he holds it there for a few seconds as punishment for being able to see how easy it is for him to charge $10000 for a few minutes work, then pulls it out.

I won't say it was the most pleasant of experiences, but certainly the whole thing was fascinating. I now have a new inner awareness. Who says men can't be sensitive?

Ned – My favorite farm worker

I had my first post-treatment cancer scan this week. I was pretty apprehensive prior to the scan. For me, as I said in the previous post, even though everything has gone so well with the treatment and the operation, with the post-op biopsies being clean, fast recovery, and now feeling as fit as I ever have, there is still that lurking fear that perhaps one cell got away. That it’s moving around inside the newly modeled bronzed Adonis body that I now have, looking for a nice little place to settle down and have gazillions of children. I’m sure that fear is with every cancer survivor to some extent. And as the time comes closer to actually look inside the body to see if the children are there, the apprehension increases.
So I scuttled off to the hospital last Thursday with this tiny dark cloud of concern over my head, trying and failing to hide it with cheerful banter. The process does nothing to cheer you up either, drinking copious amounts of barium sludge (berry flavored – yeah right) and then lying in the washing machine while it exposes your insides to the world. I had the scan at 8:00 a.m., but had to wait until 11:00 a.m. to see the ologists and the little dark cloud slowly grew during the wait.
Good news however. Still no evidence of disease – NED. This is now my favorite word. It used to bring to mind a grizzled old farm worker. “Arrr, Ned lad, will e go and milk the cows, oi fancy a bowl of cornflakes for me tea”. Now it has a whole new meaning. The little dark cloud dissipates, leaving the merest wisp of concern ready to slowly grow over the next three months to the next scan.
The other big deal over the last two weeks has been the start of self-dilations. I gave you the basic details in the previous post. Last week I decided to give it a try. Before the first go, I was concerned about the gag reflex and how to get over it. So I turned to my trusty computer and innocently Googled “overcoming gag reflex”. Whoa. Good grief. Well, I suppose I should have known. I had opened a gate to some of the most interesting web sites and news groups that I have ever seen. I suppose if I’d given it some thought I would not have been so surprised, but I was.
Anyway, among all this stuff was a web site for dentists, with lots of tips on how to overcome the gag reflex. One strong tip was for a throat spray called “Snore Relief”. Meant to relax the tissues in the throat, so off I went and bought some. It does seem to work, not completely but enough. I popped the tube – it’s called a bougie for some reason – into my mouth and guided it down. It got a little way down and encountered the restriction, so I chickened out at that point. I was concerned about tearing the stomophagus that I now possess if I forced the issue. I decided to wait until I saw the surgeon and take some advice. Sure enough, he said to whack it on down, so since then I have carried out daily dilations. I’m still not all the way down yet but a little more each day. It seems to be working out well. It’s really quite unpleasant, but better than getting a general anesthetic every two weeks.