Scalpels, Drugs and Rock'n'roll

by Ray Warke

October 2007 Update

I came home from my local pub last Monday night having consumed 2 pints of guinness (by the way, I live in the UK, so that's two 20oz pints!) and sat down immediately to eat the very spicy Singapore chow mein I'd picked up on the way home. I finished the lot and followed it with a couple of bottles of budweiser and two bags of potato crisps before retiring to bed!

I had a great night's sleep!

As I sat down to eat my usual breakfast of 2 large pork and leek sausages with hash browns baked beans and black pudding and two mugs of coffee, I realised just how well I was doing!

It was stories similar to my own that I read on the EC mailing list that encouraged me and helped me through the chemo and surgery. So, here is my own...

I began to experience some difficulties eating around September 2004. Nothing much at first, just a little difficulty swallowing and sometimes a little burning pain. I have had a lot of heartburn problems for most of my adult life but I'm the kind that won't bother the doctor unless I'm in agony. I've been a smoker for 30 years but despite this I've managed to keep myself reasonably fit.

By October, the burning pain was becoming worse and it was different in some way to the usual heartburn I knew. I find it difficult to describe pain but I could tell that something wasn't right.

I made an appointment to see my GP who immediately diagnosed esophagitis and prescribed me with Omeprosol (H2 blockers) and sent me packing, assuring me that if it doesn't clear up in a month or two that he would refer me to a specialist for an endoscopy!

I left his office satisfied and indeed relieved that there was nothing serious going on. But when I got home, I looked up "esophagitis" on google and read that it could lead to esophageal cancer. Not only that, but only 5% of esophageal cancer victims make it to one year! Now, I'm very capable of denial but once I read the symptoms, particularly the difficulties in eating certain foods like bread and meat, I got pretty scared!

Anyway, like I said, I'm very capable of denial, so I convinced myself that it wouldn't happen to me and I carried on with my plans to visit my step-daughter (Sarah) and her fiance in Iowa the following month. Not my first trip to the US but it was Sarah's birthday and thanksgiving just one week apart and I'd never been to a thanksgiving dinner!

Rachael and I had hardly set foot in Des Moines when I discovered that I was really having a lot of difficulty eating anything. I struggled through the two and a half weeks there not wanting to spoil anyone's fun and pretending as much as I could that I was OK. But in trying to force the food down I would start heaving and getting quite violent hiccups. It was easier, and I drew less attention by simply avoiding food and eating as little as possible.

So, probably weighing around 10 pounds lighter, we returned home to the UK and I immediately set up an appointment with my GP again. This time though, my own GP was on holiday and I saw another doctor who was standing in for him. I suggested to this doctor that I might have esophageal cancer and he immediately brushed it off saying... "No, no, no! You're far too young and it's extremely rare!" (by the way, I'm 47)

He explained that it was probably a bacterial infection as a direct result of the esophagitis and that it could often be quite a stubborn thing to treat, but not to worry and in the meantime, took some blood samples for testing.

Call it denial again, but he convinced me! And once again I walked out of that office relieved.

It was now December 2004 and I found myself selecting foods that were easier to eat. So, things didn't seem so bad! My mother came from Ireland to spend christmas with us and on boxing day we took a trip out with her to our local pub for a rump steak dinner. I managed two bites and thought I was going to die there in the pub. A piece of steak got stuck in my gullet and it wasn't going to move in either direction. Had I known then what I learned a couple of months later, I'd have taken a slug of my mother's Coke and blew that sucker out! But I didn't dare to try and drink anything! Eventually, the obstruction moved and I was OK, but it took a couple of hours. This was the last straw and right there and then I knew that I absolutely without any doubt, had esophageal cancer and I was going to be dead before the summer!

The next day, I emailed my GP telling him that I wasn't happy with his diagnosis and that I was demanding the endoscopy that he had promised.

an appointment was made for me to have the endoscopy on February 11th 2005, Rachael's birthday (I've promised her a better one this year).

The endoscopy discovered a stricture in my lower esophagus from which biopsies were taken. Ten days later, I got a telephone call from my GP informing me that I had indeed got esophageal cancer and that treatment would begin immediately.

Now, I have to be truthful here. The first thought that I had when the doc told me I had cancer, was... "how in hell am I ever going to stop smoking?"...

I'm sure I don't have to tell anyone how addictive nicotine is but none of you are aware of how addicted I was! I was smoking a pack a day and knew that I always would. I had tried to give up on many occasions in the past but never succeeded. I knew that if I only had enough money to buy either a pack of cigarettes or my dinner, that the cigarettes would win hands down! I knew how miserable I would be without a cigarette. I knew that I'd become nervous without a cigarette. But worst of all, I knew that I couldn't cope with stress without a cigarette and having no cigarette would cause me stress!

I made a pact with Rachael that I would give up by March 21st but I needed 4 weeks to psych myself up to it. She being a smoker herself understood somewhat and suggested that she would do the same to support me.

Appointments were made for a further ultrasound endoscopy and CT scan which confirmed a tumor 7cm long in my lower esophagus. I was also referred to an Oncologist who set up 2 sessions of chemo to begin on April 4th.

The oncologist informed me of the drugs they would be using for the chemotherapy. She said that normally they would choose 5FU and cisplatin but she was concerned that the side effects of permanent hearing loss that is common with cisplatin would be a factor to consider in my case as I'm both blind and a musician. Her advice was to replace cisplatin with carboplatin. I agreed.

A PET scan was also required and meant a trip to Ireland. There are eight PET scanners in the UK... six in and around London, one in Scotland and one in Belfast. Because of the geography of where we live in the south west of England coupled with the fact that I originally come from Belfast and all my family are there, it was much easier to take a short flight from Exeter to Belfast.

These few weeks were pretty hard. Nothing seemed to be happening fast enough and I could feel myself slip into states of depression. I was cancelling gigs at the last minute always convinced that I would be alright to go out and sing and play until I was faced with the choice of actually getting out of my recliner and going out or staying where I was and wallowing in my thoughts while I smoked my brains out!

I ended up canceling every gig from February 21st until March 17th. E ventually pulling myself out of my chair and going back to work for the sake of Saint Paddy.

I imagined that everyone at the gig knew of my situation and that they were all whispering, "he has cancer you know!" and "he shouldn't be smoking like that if he has cancer". The truth was that no-one except for Rachael and my roadie knew anything at all about my illness and I was feeling guilty of committing slow suicide in public! This was to be the last gig I played for a long time, if ever again!

The PET scan was scheduled for March 23rd and so we flew out of Exeter without any cigarettes on the 21st.

I took my laptop with me so that I might keep up with reading the EC list messages. Rachael and I both use synthesized speech on our computers to read the screen and as I wasn't fond of using headphones, the list messages were being broadcast in my mother's living room for everyone to hear. Suddenly mother announced that I shouldn't be reading all that depressing stuff! I informed her that my other alternative source of information was completely statistical and wrong and only telling me that I had less than a year to live, and that these were real people in the same situation as myself telling me how they survived or at least, how they coped with the treatment etc. Her answer to this was that I shouldn't be trusting anyone but my doctors! I told her that none of my doctors had EC and before I knew it, an almighty row had broke out! Rachael managed to calm everyone down and all was OK, but it was obvious that tensions were high and I began to think that I was maybe to blame having given up the cigarettes!

The PET scan was to take about 45 minutes and I was advised to bring a relaxing CD of my choice to listen to. I brought my favourite album of all time, "Amused to Death" by Roger Waters. Anyway, it took them three weeks to fax the results of the PET scan to my oncologist, which didn't hold up my treatment in any way, but I was pulling my hair out wanting to know the results. Eventually they arrived and confirmed that there was lymph node involvement, though only one node was hot and it was within the resection area. My oncologist told me that they wouldn't be treating me with radiation as it was considered to be of no benefit because of the location of my tumor.

I pretty much sailed through the chemotherapy. I mean, I didn't like it at all, but making comparisons with some EC group member's experiences with chemo, I was pretty lucky! I had a couple of days of feeling lousy and about a week of constipation and quite a bad case of mouth sores that went on for weeks!

I got to meet my surgeon, Mr Richard Berresford, for the first time between the two chemo sessions. My first impressions of this man were as I had expected. He seemed a typical surgeon with no bedside manner and quite cold. He told me that the lymph node was about 2cm in diameter and that if it got any larger at all, he wouldn't be doing any surgery! He was hopeful, however, that the second chemo session would possibly reduce the size of this node and it would be full steam ahead for the surgery which would be scheduled for about 4 weeks following the chemo session. The visit lasted no longer than 10 minutes and Rachael and I left his room in shock! We hadn't bargained for the possibility that the surgeon might not be willing to operate!

I spent most of the next chemo session in my recliner. Again, I consider myself lucky and I'm sure it could have been a lot worse. I was constipated again and the mouth sores were even worse than before but I just felt like I had a bad flu! I had no sickness nor hair loss at all.

Back to Mr Berresford's office in early May where he happily announced that the lymph node had slightly reduced in size and that the surgery would happen on June 7th. Very very happy news! By the way, I'm not being disrespectful here by referring to Mr Berresford as mister! All surgeons move from doctor status to mister status on becoming a surgeon in this part of the world. He also seemed like a different person on this visit and since getting to know him now I believe that he had to be "matter of factual" on that first visit. As it turns out, he is one of the warmest and most kind-hearted caring people I have ever had the pleasure to meet. Another lucky break too, as I learned that he is one of the top notch thoracic surgeons in Europe and that he was to perform the surgery laparoscopically as he had been to Pittsburgh and learned the technique from Doctor Luketich. I learned for the first time on this day that my staging was T3-N1-M0.

The month of May was a good one. The chemo had shrunk the tumor enough to allow me to eat a lot easier than I had been for quite some time. And I was living it up, enjoying these last few weeks of normality! I was convinced that I would never again enjoy a good meal, destined to nibble my way through the rest of my life! This also gave me a good opportunity to gain some weight again before the surgery. I was now weighing in at about 165 pounds which was about 20 pounds lighter than my normal weight. I thought it would be good to have a buffer as I was likely to lose a lot more after surgery.

I was much happier now too. I had no particular reason to be but I was no longer getting depressed about the whole situation. I think that once we come face to face with our mortality it can be quite enlightening. I thought a lot about people who I knew that died from cancers of one kind or another... there was my daughter Paula who was taken at the age of 17 with Leukemia. Paula had known from when she was only 13 that she could possibly die from her disease, yet she remained smiling for four years with this uncertainty... Then there was George Harrison who went back into the studio and wrote and recorded the best album of his career, "
Brainwashed". I bought this album and listened to it over and over again during these months at home and in hospital. I hardly listened to any other music in fact. I saw George as a role model and remembered him saying in an interview that he wasn't in control of his cancer and that he "gave his life to God a long time ago and he wasn't trying to hang on to anything", he was fine with it. He made me feel fine with it too... sure, nobody wants to be ill or feel uncomfortable, but I went with what was happening.

Rachael's birthday present back in February was a pair of tickets to go see Mark Knopfler perform in concert at the Odyssey Arena in Belfast. The concert was scheduled for May 23rd and I had promised her that we would make this date if it was the last thing I do. I even believed that it was probable that it really could, in fact be the last thing I would do. We took the trip to Ireland again and, although I felt quite sick on the day of the concert, a miracle happened and we made the show!!

I got my weight back up to 175 pounds and, having been off the cigarettes now for two months, I felt very fit and ready for battle!

I spent 10 hours in the operating room on June 7th where everything had gone well according to Mr Berresford, or, "Richard" as I now knew him by. He spoke to Rachael immediately after the surgery and was very happy with my prognosis. We found out later that he had removed 90% of my esophagus along with 30 lymph nodes of which 4 tested positive.

My memory of this time is quite hazy but I remember being surprised of how well I felt when I awoke in my room, considering what I had been through just hours ago.

Two days later, it was noticed that my chest drain contained some fluid from my feeding tube and we were concerned that there may be a leak where they had joined my stomach to the stump of my esophagus. I was rushed down for a swallow test which confirmed our fears. They wheeled me straight into the operating room again that afternoon where I remained for another 5 hour operation. They discovered not only a leak but that the blood flow to the stomach had stopped and that one third of my stomach was dead tissue and had to be removed. This meant that all the care taken to perform this surgery laparoscopically had been in vain and that they had to open me up at the back in the traditional manner.

Once again, Richard spoke to Rachael immediately after surgery but seemed a lot less confident of my prognosis than the previous time. He was hopeful though.

I awoke in intensive care on a ventilator and spent a further two days there before they moved me back to my room. Again, my memory of this time is quite hazy due to the morphine but I felt pretty rough! I remained in hospital for a further two weeks where I received the best care that I could imagine. The whole team of doctors and nurses without any exceptions performed their tasks in a most professional manner and I felt like I was the only patient in the hospital that mattered to them.

This was the longest fortnight of my life. It was very difficult to move to be able to do anything. Even the most trivial of tasks were mountainous. I suffered quite a lot of pain if I tried to move but I was also bound and tied by all the tubes and lines attached to me. And not being able to see anything meant that far more care had to be taken not to catch one of the lines on something. Even to wear headphones in order to listen to a book or to George Harrison only resulted in adding yet another line to myself.

I needed help to do everything which is a situation I am not at all happy with, especially when I'm presented with no choice!

There was lots of laughing too though. .. they wanted me to have a CT scan a couple of days before I was discharged and my nurse, Brenda, was trying to encourage me to drink as much as possible of that awful anisseed flavoured stuff they give you prior to a scan... "try and drink as much as you possibly can", she said, "pretend that you are at the pub and that you are drinking pernod", she encouraged... I took another sip and exclaimed, "the trouble is, Brenda, that when I'm at the pub and drinking pernod, I think I'm preparing for a CT scan!".

Rachael came into the hospital every day and stayed for at least eight hours. She really was a rock! And it might be a cliche, but I really don't know how I'd have got through all this without her.

One by one, the tubes and lines were removed at a rate of about one a day. I was being freed from my web! I was up and moving around by myself and they were talking about letting me go home... I felt great!

Apart from a seemingly endless task of trying to find foods that I could eat, the only alteration I had to make was to raise the head of the bed up a few inches. I wasn't getting a lot of sleep at night though. I was still in some pain and could only get comfortable on my back. I was much more comfortable on my recliner but wanted to be with rachael. So, I tended to nap on the recliner during the day.

Everything tasted different than it used to. Always for the worse and never better. Some things tasted metallic and I didn't like how dairy products tasted at all! I had been a big lover of cheese prior to surgery but now I couldn't stand even the smell of it. I was never a big drinker but I liked a pint or two of Guinness in the evening. Now it tasted extremely bitter and undrinkable. I tried to change to drinking wine but Rachael's taste in dry white wine was too bitter as well. I began drinking sherry and sweet fruity red wines.

I would take notions for things like cottage pie or maybe a chicken supreme and Rachael would go to lengths to either make me what I wanted or to go buy quantities of it. Then the notion would wear off after 24 hours and I would feel nauseous at the thought of either cottage pie or chicken supreme. I must have been a trial for her!

The taste thing sorted it self out eventually with only some slight changes. Nowadays, I am eating everything with only one or two exceptions... I never drink tea and have become a coffee drinker which is a role reversal completely for me. I will only sometimes like a little bit of cheese whereas before I couldn't eat enough of the stuff. And it was only last Monday that I discovered that I got my taste back for Guinness, ah!

One evening about two weeks after being released from hospital, while relaxing in my chair, I could smell a strange odour. Wondering where the smell was coming from, I discovered that the right side of my tee shirt was soaking wet. Now, I have to remind you here that both Rachael and I are blind and we live alone out in the sticks of rural Devon. We could only assume it was blood and it was coming from one of the chest drain sites. I can handle a lot of things, but I have never been good at handling the thought of myself bleeding. I got up to go clean myself up and suddenly felt dizzy. I called to Rachael to call an ambulance as I felt myself drifting out of focus and going down slowly to my knees. I passed out and hit the floor trying desperately to grab onto something.

I came to about 30 seconds later in a cold sweat. Rachael was on the phone with the emergency services. The ambulance was on its way and arrived in remarkable time. It turned out that it wasn't blood and after some tests for diabetes, the ambulance crew were happy that I was OK and didn't need to be admitted into hospital.

They did, however, arrange for a doctor to come out to the house the next day to check me over and in the meantime, dressed my chest drain site as it was still leaking fluid. The doc came out the following day and confirmed that I had an infection.

For the next couple of weeks, I had visiting nurses come out to dress the wound but the infection just seemed to be getting worse rather than better. Eventually, I was admitted into hospital again to have a small operation to fit another chest drain in the site. To cut another very long story short, this infection took months to clear up and the chest drain site didn't heal until late September. During this time, my weight was decreasing and decreasing, until I reached a low weight of 158 pounds. Despite this though, I was feeling better than I'd been for months and felt confident that I could regain the weight, or most of it at least, before November and that I'd be able to go back to the states for a proper thanksgiving dinner!

I went to see Richard Berresford at the beginning of October for a follow up visit. He was amazed at how well I looked but he thought that it was unlikely that I would get my weight back to any more than 170 pounds. Lots of people were telling me how much I suited my new slimmer look but I wasn't happy with that and felt thin and weak. All this time I had one of George Thompson's messages that he had posted to the list a lot of months earlier ringing in my head. George had said that a doctor relative of his had told him that his stomach would stretch again. I felt determined to help mine along!
I found that when I got full up eating I would just suddenly arrive there. I wouldn't have any warning that I was approaching getting full up! This would leave me feeling uncomfortable for an hour or so, but that's all. I could cope with that for a while. It really didn't take very long at all before I was able to eat the size of meals that I had been used to eating before. And by November, I was back up to 170 pounds and on my way to Iowa.

We returned to England on November 29th and we collected the keys to our new house on December 2nd. We moved out of the country and into a little town where we can simply walk to the pub and the chinese take-away. I go back to work on February 25th when I'll play my first gig since St Patrick's day last year.

So, life is good and I seem to have returned to a state of normality. I'm feeling as fit as a fiddle and my weight today is at 181 pounds. I no longer have the bed inclined, a couple of pillows is enough, and the only pain I get is bearable at about 3 inches north west of my navel which apparently is due to nerve damage and will lessen in time. It worried me for a while as it also feels like something inside is swelling up but Richard Berresford assures me that this is very common and if it doesn't go away of its own accord, they will treat it.

As for the cigarettes, I want to be honest here and tell you all that I, for the most part, have stayed off them but will have an occasional one when down the pub. I'm feeling fairly guilty about that but wanted to share it as I am sure that there are more than just me out there having a sneaky one now and then? I'd love to hear from you!

I wish I could acknowledge all those individuals who I feel contributed to my learning from this list. I can't remember who was commendable for what, except for cowboy George... thank you George for helping me stretch my stomach! And also to Barby Woods for all the updates on Bob, a fellow Irishman who I felt a certain kinship with. And a big thank you to the EC Group list in general and it's owners Tammy and Marc, because without it I may not have been given the ambition to live, which is how I'm still here today!

Ray Warke (The Belfast Cowboy)

Singing Through The Strain

(an update to Ray's EC Story) by Rachael Warke
October 3, 2007

The elation we were feeling when Ray wrote the above story was so wonderful! We believed, with all our hearts that he had beaten the beast! We confidently waited for the few remaining symptoms to go away, and for life to return to normal. Only the symptoms didn't go away, and, in fact, seemed to increase over the next few months. We spoke to Ray's Dr. Toy, oncologist, about this. She tried to be reassuring, saying that the numbness in Ray's neck was most likely nerve damage from the surgeries he had had. Same with the pain that kept cropping up from time to time. Eventually, I think more to soothe our fears than from any fear of her own, she ordered another CT scanin July, 2006. It turned out she was right about the numbness in the neck. But the scan also picked up activity in two lymph glands near where the original tumor had been. The news was terrifying and devastating. But Dr. Toy was not daunted. She said that there was a reasonable chance the cancer could be eradicated, using chemo and radio therapy. And so, once again, we were blessed with hope.

Ray seemed to do well with the treatments. He handled the chemo about as well as he had the first time. Chemo is awful, and makes your whole self feel terrible. There is just no way around this. But he didn't suffer from the more serious side effects that often accompany it. And, while I was afraid that the radiation, given at the same time as the chemo, would wipe him out, he continued to feel well enough to go in every day with hardly a complaint.

It was one night during all this that Ray wrote the words to "Stayin' Alive". I have always believed that it was a kind of an affirmation, perhaps an antidote to the feelings of depression and frustration that he'd given vent to a few days earlier. Whatever the impetus, the result was wonderful. The positive words of the song seemed to take root in his head and heart, and he immediately began to feel better. He also wanted to be able to share this newfound sense of determination with fellow EC fighters. And so he began to make plans to record the song, just as soon as he was done with the treatments.

Somehow, the part the oncologist had said about his probably feeling worse when the treatments were over didn't quite make it through to Ray's belief system, but since mine is less well developed, I will admit to feeling pretty anxious as he made his plans. Unfortunately, the doctor really did know her stuff, and Ray began to feel noticeably worse as the daily visits to the hospital neared their end. By the time the designated weekend for recording rolled around, there was simply no way Ray was going to record anything.

And it didn't stop there. He continued to feel worse over the next two months. By December 15, we were calling the doctor, who came to check Ray out several times over the next few days. By the 18th, we was admitted to the hospital, where they tried to discover what was making him so ill. It turned out that he had an ulcer, near where the original trouble had all begun. The professionals seemed happy enough to attribute Ray's pain and intense nausea to this ulcer, but we continued to have our doubts. By the 21st, he was feeling much better, and was sent home. The next day, he was worse than ever. Only we decided that he could be sick at home as easily as he could be in the hospital, and at least he'd be at home for Christmas. The next few days were brutally hard. I don't think I've ever seen anyone so ill. Sometime on Christmas morning, he announced that he was feeling better. I didn't believe it at first, since he'd had small moments of feeling a bit better over the last couple of weeks, but as the day wore on, and then became the next, and the nexgt, he really was over it. We still don't know exactly what was the cause. The best guess we've heard is that it may have been a form of radiation sickness. This makes all those books I read years ago just seem all the more believable!

The oncologist had told us that she didn't want to do a scan for several months after the radiation, allowing it to finish doing its thing, and then to heal. So, we had to wait till April to find out whether the treatments had worked. On May 3rd, we received the news, that they hadn't. There were now two "hot" lymph nodes, both near the original tumor site. They were still very small, but she said that, since the cancer had returned, and was into the lymphatic system, there was now no chance for a complete cure. Her plan, she said, was to wait until either Ray began showing symptoms, or scans showed growth in the area, to start a much tougher regimine of chemotherapy. He had another scan in August, which showed only slight growth, and "possible" mets to the liver. Still, we are waiting, and Ray is holding his own and feeling relatively well.

In the meantime, Ray had been writing more songs. Now, the thing you need to understand about Ray is that he sings, all the time, about everything. We're not talking about songs you hear on the radio that make you want to sing along. He has no problem at all borrowing someone else's tune, but the words are always his very own. And usually about whatever might be going on at the time. Looking for his shoes? How much he loves me? Dealing with cancer? it's all part of his life, and therefore, bmust be sung! But a few of the songs took shape, and became a kind of chronicle of how he deals with cancer, and all that it means. Some were humorous, some were not, but all were straight from his heart.

When the last recurrence was found, Dr. Toy advised us to take this time to do the things we'd always wanted to do as a couple. We took her advice. We've always wanted to record a CD and hoped for us to sing together on at least some of it. And so we did. The CD is taking shape, as I write this, and somehow, I have found the confidence to believe Ray when he tells me that, no matter what the pros may think, he's gonna be hangin' around for many, many more years.

Send a message to Ray and Rachel