The last post

It’s three weeks since the operation and this recovery business is starting to get old now. The first few days after my release from the hospital my progress was very fast and very noticeable each day. I was given strict instructions on carrying out breathing exercises, walking, feeding, and so on. Within a few days, I was able to walk up to my local Starbucks, rest over a cup of coffee, and then walk back. Anyone that knows me will understand what a motivating factor that Starbucks is for me. I’ve extended the walking since and I am trying to do all the right things. But invariably, progress slows down over time and it becomes a bit of a slog. Still, I do continue to improve day by day and that is what is important here.

I have had little or none of the problems or complications that often accompany this operation. No regurgitation at night, no “dumping syndrome”, pain adequately managed so far. The biggest issue for me is now relearning how to eat. I am feeding through a tube overnight, although I now have a portable carrier for the food and the pump so I don’t have to push the stupid metal pole around all the time. During the day, I’m eating little and often. The doc cleared me recently to eat “soft foods” but a couple of attempts to eat a more normal diet have led to my filling up rather quickly and resulted in swallowing difficulties. I will have to move very slowly onward from soups and things to give my reconfigured insides a chance to get used to the changes in digestion. I’m losing weight, which is expected to some extent as long as it’s under control.

This will be the last post to the blog, for a while anyway. I will leave the blog itself open and public, but stop updating it. I assume that soon I will move on to the general post-cancer screening process – three-monthly checks for a while, then six-monthly, then yearly. So perhaps I will issue an update with each check-up just to share my progress.

The blog has been very enjoyable for me to do and many people have commented on how much they enjoyed it. I hope it fulfilled its purpose of informing everyone about the progress of my treatment without becoming too detailed on the medical or biological front. It’s been a very “all about me” exercise, but I make no apologies for that.

Many people have commented on my positive attitude throughout this whole process. I have been very lucky in all of my responses to treatments. The radiation had little external effect other than a dramatic lowering of my energy levels. The chemo, apart from a brief nausea interlude and the awful heart attack scare, had little effect either – no hair loss, weight loss, etc. The operation has left me with little to do but work towards recovery. It’s very easy to retain a positive attitude when there’s not much to complain about. I wonder how positive I would have been if they had not been able to control nausea, if my hair was coming out day by day, and so on. Who knows?

There are two more lucky breaks that I need to mention before I closeout. As I believe I’ve said in a previous post, the odds of recovery from this horrible and aggressive cancer are enhanced dramatically by getting treatment at a hospital that treats many esophageal cancer patients. All the big name hospitals in the Boston area are in this category. I feel extremely lucky to live where I do.
Lastly, 38 years ago, I was lucky enough to meet and marry a young innocent named Kathy Bartlett. Little did I know then what a good move that was. Kath has been a continuous source of support and love throughout our marriage but in particular over the last few months she has been my complete foundation. The course of this disease would have been very different had she not been at my side.

Thanks for reading. I’ll update the blog with each routine check up, at least for a while. And, with luck, I’ll not need to open it up again for regular weekly updates.

I've lost me mum!

First of all, how am I? Pretty good, considering. I’m very sore in places both related and unrelated to the surgery. I’m pretty late with this update as I was delayed leaving hospital for a couple of days. Delay 1 was caused by a low grade fever combined with bloating of the legs and feet. (I know now why they call it bloating – my legs look like two huge bratwurst with a bloater at the end of each one.). Ordinarily, this delay would make me very unhappy and more than likely to voice a timid little complaint. But not this one. The next day I did start to whine after being told that my white blood cell count was a touch high and they wanted to do a CAT scan. Eventually they let me out last night at around 5 p.m. Here at home, the differences come as a shock. We bought a new bed just before I went in and it takes up more space in the bedroom. As does my new metal girl-friend, the pump pole to whom I have been forced to become attached. She stands by the bed all night, feeding me continuously through my tube. Trouble is, she’s also got to come to the bathroom with me whenever I need to pee and with the meds I’m taking that’s a few trips per night. I’m pretty sure she watches as well. Bottom line is, I’m very sore as I said, and everything that I can do takes about three times as long. But each day the improvements are noticeable.
A couple of days ago we received the formal results of the biopsy of the removed tissues. We killed it; the ologists, Kath, and I killed it dead. The surgeon removed several cm of esophagus, a big dollop of stomach, and 31 lymph nodes in all. Not a trace of the cancer anywhere on the biopsy. So as you can imagine, Kath and I are overjoyed. This news means that I’ve now got a better than even chance of being cured completely. When you look at the numbers when this whole thing begins, it’s quite terrifying. Moving up into the better than evens sector is just wonderful.
What do I now do with the blog? While I have been in here I have experienced so much. Many of those experiences and their associated memories have been manipulated by different levels of consciousness, both the gently wandering levels generated naturally by me, and the roller-coaster type of rushing changes caused by pain meds. Whatever the derivation of the memory or experience, they’re all worth commenting on.
So I’ll split the memories up into compartments such as emotions, tests, diet, and so on and have a brief chat about each group.
First, for this post, I’ll talk about some of the emotional issues that Kath and I have noticed and experienced over the last couple of weeks. The weekend preceding the surgery was quite easy to deal with, given that I was on a clear liquid diet and having to drink a gallon of “bowel cleansing” fluid called “Golytley”. If ever there were a more misnamed product, I’d like to meet it. Anyway, the prep led to lots of jolly japes and jokes that successfully covered our feelings. The morning of the surgery was a bit different though. We both smiled hugely and often at one another from the time we got up in the morning until she left me in the surgery prep room. Each of these was a mixture of a smile of encouragement and a rictus of fear. We were both extremely anxious.
I was asleep for a full six hours after a surgery that took seven hours in itself, and awoke in ICU with nurses at my beck and call. The relief on waking up from major surgery is heavily attenuated by the happy drugs that you are on, but it’s still strong enough to break through. And seeing Kath for the first time after surgery; well, it made my heart jump for joy.
After that, the emotions sorted themselves into groups – family, lifestyle, everything connected with pain and pain relief, and so on. These meandered along in sine waves, sometimes good, sometimes not so good. In particular there was a giant spike in anxiety for Chris when the “Let’s blow up planes for fun” group were discovered on the day that he flew out.
Coming home was about the most surprising for me. I suddenly felt scared at being left on my own. Big baby. But the feeling is there alright. I guess it’s related to the fact that while in hospital I had ready access to advice all the time (and to pain control on demand). Both of these are suddenly removed; well, not removed but they become more distant; and although you are ready for things like tube feeding and sleeping on an angle, and you are still in full control of pain meds because you take them (pills) when you need them, there is still this child-like fear of having “lost mum”.

For a picture of me a day after the op, scroll down a bit to "scary bloke".

Is Darth Vader alive?

For those of you avid bloggers looking for updates on Roger's progress I thought I would let you know how he is doing. Yesterday was a vast improvement on Wednesday and today they are hoping to move him out of the ICU to the ward. He had a restless night as he had some breathing difficulties, but nothing of any concern to the medical staff. Last night when I visited him he was getting mist through a breathing tube to try to clear some of the junk that has accumulated in his throat and chest causing him to rattle when he breaths. He did manage to move some of this while I was there which made him more comfortable. His pain is being managed well now and he is only in discomfort when he is moved, which seems pretty often. Yesterday he sat in a chair for a good part of the day but because of issues with his blood pressure they do not have him walking about yet. He is starting to give the nurses grief so this is a good sign.

He is getting great care and attention from the staff at Beth Israel. I am always amazed by the professionalism and dedication of the medical staff who seem to work long hours in a very demanding job.

As many of you know our son Chris was flying over from the UK yesterday. Well he sat on a plane at Heathrow for five hours at which point they were all taken to a hotel as the crew had to come off shift. Chris said it felt as if he had undertaken the journey already and it was strange to get off the plane and still be at Heathrow. He is rebooked to fly today so all being well he will arive later.

Kath

Scary bloke!

He is doing well but the nature of the operation has left him in a lot of pain which they are trying to monitor. While I was there they had to move him and change his dressings (they asked me to leave while they did this). This is very painful, but must be done every few hours. He has the full attention of Carrela a very capable nurse who seems to pander to his every need – luckily right now that only involves administering pain medication, fluids, and cleaning his mouth out etc.

He spoke to me but keeps drifting in and out. He is aware of what is going on around him and the doctors and nurses are all pleased with his progress. He will remain in the ICU until at least tomorrow afternoon. It is very sad seeing him so ill, but I am sure by tomorrow I will see a huge improvement.

Kath

Under the knife!

As promised a blog from me to update you all on Roger's progress. As you know he had the surgery today and after 7 long nail biting hours I heard from the surgeon. Everything went very well. What a relief to hear those words! He is currently recovering in the ICU and will be asleep until tomorrow morning. I will call the ICU later today and first thing in the morning to get an update on his progress and I intend to visit tomorrow late morning - as early as they will allow access to visitors.

The surgeon was very positive about the procedure. He said it was 'as good as it gets'. He tolerated everything very well. Only hiccup during the procedure was when his blood pressure fell but they managed to restore it without any problems.

He cleaned out all the lymph nodes and sent specimens to the lab for diagnoses. To his naked eye everything looked clean but until he gets the report back from the path lab (in about a week) he cannot be sure. He also mentioned that the margins looked good.

So they will be monitoring him very closely for the next 36 hours and then move him to a regular ward where he will be given food and water via his feeding tube. After about 6 days they will try him out with a little fluid to ensure the join in his throat is tight and if it is he will be allowed to take small amounts of liquid. He anticipates being in hospital for 7 to 10 days. So there you have it. I look forward to a good night's sleep tonight and I will update you all with any relevant information as necessary.

Thank you all for your endless support and good wishes - it has been a source of great comfort for us to know that so many good friends and family have been there for us during this difficult time. We both appreciate this so very much.
Love and best to you all,
Kathy

You can't make this stuff up

So I know I said that was my last post before surgery, but I've got to add another. It's my last day at work today before surgery. Many people are wishing me good luck and telling me that I'm going to be fine, etc. Suddenly, one of the guys that I've known for several years walks into my office, sticks out his hand, and says "Goodbye Rog. It's been great working with you." Needless to say, I was a bit thunderstruck. What does he know that I don't? Is he the only one around here telling it like it is? After a short and very strange interval I shook his hand and said "Bye Rich. I do actually hope to be back in October." "Oh, OK" he said, and left my office. I sat there, feeling not a little crushed.

After about ten seconds, he poked his head around the door. "You did know that today was my last day, didn't you?" My heart leapt for joy in my chest. "No, really, oh good luck, congratulations" I burbled, not knowing if he was going to a new job, laid off, going to jail, anything. I was just so relieved that he hadn't written me off. As one of my colleagues said, you can't make this stuff up.

Down to the wire

I've spent the day in pre-op testing. I've been poked, pricked, prodded, phlebotomized (pity that doesn't have a percussive p in the pole position), and generally prepared. But let's begin with last week's activities. Kath and I went to Savannah for a week's vacation last week. We had a great and very relaxing time - very hot, beaches, cheap beer, and good sea food nearly everywhere. While there, we visited Charleston SC and Hilton Head Island. Only problem was that it was just as hot here in Boston as there in Georgia, so instead of being able to pose around in a tight white T-shirt over my six-pack abs (more like a keg actually) with a nice suntan annoying everyone, I just rejoined the tanned throng here in New England.

Back to work this week, interrupted today by the pre-op testing. First I saw the cardiologist who pronounced my heart fully fit and fully recovered from its early chemo shock. Then onward to pulmonary function testing where I had to breathe into a brand-new Klingon machine. I wouldn't be surprised if it were connected to a large air accumulator that the medical staff use to inflate their car tyres. I certainly felt as if I had blown up the Goodyear blimp at the end of it. But once more. pronounced fit.

Next a long consultation with the anaesthesiologist and finally a couple of chest x-rays. At the end of it all, I was pronounced quite ready to be cut open, chopped up, and reassembled. I feel as healthy as a horse acually. If it wasn't for this bloody cancer thingy, I'd be in great shape. Ah well.

For those interested, I'll go over the mechanics of the surgery. As the surgeon told me just before the vacation, it's a big deal. This is a life-style changer. The basic plan is to remove my esophagus - the swallowing tube - and part of my stomach, and to take the remaining part of my stomach, refashion it into a tube, pull it up into my chest, and reconnect it to the stubby little bit of the esophagus that's left in my neck. Thus my stomach is now in my chest, and "all you can eat" buffets are but a distant memory. A free stomach stapling and paid for by Blue Cross - how good is that?

I will need to sleep sitting up from now on as there's nothing to stop food from coming back up when I lay down.

There are two main types of operation - the trans-hiatal where the surgeon opens the stomach and the neck and works up and down the chest, and the trans-thoracic, where the surgeon opens up the chest at one side, between the ribs, collapses a lung, and works through the side. The esophagus is a bit diffucult to get at; it wriggles along behind the heart and lungs and pretty close to the spine. My guy is using a version that includes both, called endearingly the "three-hole" esophagectomy, which involves incisions in the belly, chest, and neck. I won't go into the details of why, but there are several advantages to this, although it's about the most invasive technique. As for invasive, here's a picture that I snagged from the web of the trans-hiatal operation, the one that's a bit less invasive than mine.


Cool eh? It surprised me too. It looks like he's actually trying to climb in there and rip bits out with his teeth.


Click on the picture for a better view.

So, with any luck, the three-hole technique should allow my ologist to put on his wellies (rubber boots) and a miner's lamp, climb in, and have a good look around. The operation is around six hours so he'll probably take his lunch in there too.

So, there you are. This will be my last post before the big event which takes place next Tuesday 8th. Kath will add a couple of entries while I'm in early recovery to let everyone know how I'm doing, and I'll start to post as soon as I can. See you all later.