UNEXPECTED SIDE EFFECT OF RADIATION

For over a week I suffered from what I thought was an abscess in my mouth which caused my tongue to be very painful especially when eating or drinking. Since I had a dental appointment arranged at Princess Margaret Hospital Dental Clinic, I decided to have Dr Wood take a look at the problem. To my unbelief he told me that it was a small piece of bone sticking out of my gum and rubbing on my tongue. He pulled the piece out and the relief was immediate. Unfortunately the same problem happened again withing a few days and as I was going back to PMH to see Dr.Hope, I called and made another dental appointment for the same morning. This time he poked and pulled and finally removed another three pieces of bone. (I'm not sure which was the worst: - the bone on the tongue or the dentist working on the problem) I found out that this problem sometimes happens after radiation treatments and is caused by the blood vessels being reduced and damaged by the radiation. He gave me two bottles of Perioplus Oral Rinse (Antimicrobial) which I am to use twice a day. We'll see how things go until my next visit with the dentist next week.

RADIATION AND HEARING DON'T MIX

Since my radiation treatments I noticed a loss of hearing mostly in my left ear. This seems to be more noticeable when listening to women's voices, although that could be a man thing. An appointment was arranged with the Hearing Clinic at the Toronto General Hospital to determine the actual extent of the damage. After the completion of rather interesting audio sound tests it showed that I have in fact lost some hearing in both ears. The next step will be to met with an audiologist to discuss the results and see what can be done. In some case hearing does return to almost normal after a period of time, therefore it was decided to forward the test results to Dr.Hope at Princess Margaret Hospital. He will no doubt talk with me after my throat surgery has taken place next week. JDL

GOOD NEWS BAD NEWS

My August check-up turned out to be another series of tests by four doctors and it was decided that the one lymph node left after the radiation should be removed surgically. Hence, on September 10th I will be going into Toronto General Hospital for a two hour procedure. I will stay in the hospital for about 24 to 48 hours after the surgery and then be able to go home. The problem is that there is no way to know whether there are any cancer cells in the nodes without removing them. Basically it's a win win situation as they have found over the past 10 to 12 years that where the nodes were left in, about 45% of patients died for the cancer starting up again. I am also going to TGH next Tuesday to the hearing clinic to see if my hearing loss resulting from the radiation is going to be permanent or temporary. Then back again on Thursday for my pre-admission work up for the surgery - ECG; x-ray; Blood tests etc. Unfortunately I couldn't get the appointments on the same day as it is over a two hour drive each way as the hospital in down town Toronto. But thanks to the Cancer Society, I will not have to drive myself . This is an amazing service provided free of charge to cancer patients. I anticipate the next update will be after my surgery. Please keep me in your prayers. Many thanks, John

Part 9 - SOME EFFECTS OF RADIATION

I have now completed 20 radiation treatments. During this process, I have noticed that my shoulders neck and behind my ears are always red and itchy. It’s just like having sunburn and the treatment is basically the same. About twice a day I put a saline soaked cloth on the effected area and allow the cloth to draw out the heat. After that is done I cover the area with a moisturizing cream which is nice and cooling and leaves the area nice and moist. I use a product called LUBRIDERM but there are many others on the market also. Another cream I have is ALOE VERA GEL which feels great when applied but for some reason, it tends to dry out my skin. A positive side is that I not longer have to shave as the radiation has burned the hair follicles. The negative side is that the hair on the back of my head has started falling out. If it keeps going I will look like a US marine soon.
This weekend I talked way too much and ended up with a very sore mouth. As my mouth is a little swollen, it causes my tongue to rub on my teeth and get painfully sore. I shared at our monthly Christian Fellowship Breakfast Meeting on Saturday morning and also on the weekends I get many telephone calls from family and friends which I love and look forward to. Unfortunately I will have to limit my phone time to BRIEF for a while but I know you’ll understand. (You can do the talking OK)
Perhaps the Lord is saying, John be still (and quite) and know that I am God.
Thanks for all your prayers, cards and calls.

Part 8 – 2ND CHEMOTHERAPY TREATMENT

(Almost finished my 2nd treatment)

This treatment in my case, takes about 18 hours from start to finish and the side effects so far have not been too bad. This time I felt a little sick towards the end of the night but as soon as the nurse applied another small bag of anti-nausea medicine I started to feel OK. At around 9 am the Radiation Department telephoned and said they were waiting for me and so I grabbed the elevator and headed down from the 18th floor to the basement. I had already put my prescriptions into the pharmacy the day before so after my radiation, I headed there to find out the cost. I was pleasantly surprised to find that my application for the Ontario Government Trillium Health Care Plan had been approved, and that most of my drugs were now covered as I had already met my deductible portion of the plan.

As both treatments make you quite tired, I decided to call a taxi as the next bus wasn’t for over an hour and I really needed to lay down and relax. My bed felt so good when I hit it. zzzzzzzzzzzzzzzzzzzzzzzzz

Part 7a: THIRD WEEK COMPLETED - (May 19 - 22)

This was a short week as last Monday was a holiday. However, we still had to have the same number of treatments so Wednesday was catch up day; radiation in the morning and again in the afternoon. Also on Wednesdays I see Dr. Hope and have my weight checked and to my delight I had not lost any weight. I also learned that I only needed to take the liquid Codeine if I needed it. Great news, I haven't taken any all week. The greatest problem for me is eating and drinking as everything tastes absolutely awful. Obviously I have to eat, so I work on a constant trial and error basis and unfortunately the error side is winning. Simple food like mashed potatoes tastes a bit like wet cardboard. After it's eaten I clean my teeth, wash my mouth out with baking soda and have a drink of soda water then I'm OK for a while. The other side effect of the radiation is a dry mouth and so I constantly sip on liquids.

I leave for the Princess Margaret Hospital at 8.30 am tomorrow and have a lot to do tomorrow as after my radiation, I have to go to the blood lad to have blood taken, meet with Doctor Siu, then go to the 18th floor to have my second round chemotherapy treatment. This will again mean staying over night so I am looking forward to find out who my room mate will be this time.

This past week I had the pleasure of meeting and also saying goodbye to some great people. I guess I am becoming one of the old timers now as each week there are more new people arriving and I will be into my fourth week at the PMH Lodge. Time flys when you're having fun.

Part 6: 2ND WEEKEND HOME - May 15 - 19th

I arrived home for the 'Victoria Day' long leekend at around noon on Friday. To my surprise, a friend had been by and totally cleaned my cottage and left a lovely bunch of cut flowers on the dining room table. Thank you very much. I unpacked my bag and headed out to Walmart to buy some groceries and a few other things. I decided to pick up a blender which was the best move I made all weekend. As I was unable to swallow most food, the blender made it possible to make some great smoothies. I have been using the product Boost as a food supplement and found that one vanilla boost, some fruit and ice cream makes a nutritious meal. I also bought some baby formula which makes a great almost liquid porridge for breakfast. The smell of steak on the BBQ drives me wild but it will be a while until I can enjoy more than the smell. I thought it might be fun to invite some friends over for dinner and blend up steak and potatoes and serve it in a large beer mug. It was just a thought. Well I'm back to the lodge tomorrow so I'll update this site next weekend. May God bless each person who reads this weblog.

Part 5 - SECOND WEEK COMPLETED - (May 11 - 15th)

Dr. Andrew Hope - Princess Margaret Hospital


SECOND WEEK AT THE LODGE
The lodge is an amazing place and I will do one section with photos later on. The people who stay there and the staff who run it are without a doubt truly great people and this makes my stay so much easier. Also the Princess Margaret Hospital staff are so well organized and friendly and always willing to chat or offer advice to help make this journey easier. Dr. Andrew Hope is a Radiation Oncologist and an Assistant Professor and quite an amazing guy. I sense that like his name, he gives people Hope for the future. Thanks Doctor.

RECOGNIZING LIMITATIONS
Both treatments have the tendency to make you tired and I have found that I can doze off while working on my computer or waiting for an appointment.

SALIVA CHANGE
Mouth and throat radiation gradually changes the Saliva glands and they stop producing the normal flow of saliva. As a result the mouth becomes dry and always seems as if it is coated with mucus like paste. Rinsing the mouth with a baking soda and water mix and drinking lots of water seems to help. Night is the worst as I find I am constantly getting up to rinse my mouth.

TASTE CHANGE
The other gradual effect of radiation is taste. By the end of my second week of treatments I found that most food has a metallic taste which is quite unpleasant and really spoils the whole process of eating.

MAJOR PAIN (Sore throat and mouth BIG TIME)
The final thing so far is an ever increasing sore throat which makes it very hard to swallow. The doctor has prescribed liquid CODEINE every 4 hours and a mouthwash called MUCOSITIS which numbs the mouth and throat enough to allow you to eat, if you can swallow some of it without gagging. The other problem I have encountered this weekend is small canker sores on the side of the mouth and tongue. I tried ORAJEL on one and after I climbed down off the ceiling it did seem to help for a while.

SIDE EFFECTS
Most drugs have some side effects and for CODEINE the side effect is constipation. To counteract this, the doctors recommend a daily dose of SENNA LAXATIVE and DOCSATE SODIUM a stool softener. Up until this journey, I thought a stool softener was a small pillow.

Part 4 - FIRST WEEKEND HOME (May 8-11)

Coming home was great and the first night both my children came over with their respective partners. The next morning I was up early and had the laundry done by 8.3 but I soon found that I was not quite as well as I thought. A visit to Goodies Café to chat with my friends Brian and Gayle who are cat sitting for me, ended quickly after I realized that I had this sick feeling in the pit of my stomach. I stayed for a juice and went straight home. I had planned some shopping but at that point, I didn’t think it wise to push my luck, so I decided to lay down for a while. To be honest, this first weekend home was like that on and off the whole time. The was my first reaction to the chemotherapy given to me 3 days before and although it was not pleasant, it was livable and I managed to get through the weekend without being sick. The worst time was at night when my mouth would seem to dry out which is one of the side effect of the radiation. As a result I was up and down to rinse my mouth with a baking soda rinse most of the night. Drinking lots of water also helps but then I was not only rinsing my mouth every hours but also using the toilet. Needless to say by Monday morning I was looking forward to being back at PMH lodge for a rest. Next weekend is the May long weekend so I have three days at home and now that the effects of the chemo has worn off I am hoping that it will be easier to handle.

Part 3: THE START OF JOURNEY - WEEK ONE

After a very a pleasant drive to Toronto with two other patients and our Canadian Cancer Society driver Alexis, we started to find that the traffic was slowing down around the 401 area. After a few detours across the 400 highway southbound lanes, we headed down Black Creek Drive and made our way zig zag style down to Princess Margaret Hospital.
FIRST WEEK OF 35 RADIATION TREATMENTS
I was early enough to get a coffee before heading down to level 2B unit 5 for my first radiation treatment. My mask was waiting for me and after a few adjustments, my head was locked down. The technicians promised that mouth and eye holes would be cut out for Tuesdays treatment. (Pictures of my mask are posted below)
The whole process only took about 20 minutes during which time the machine moved around and made strange sounds. Sounds that I will become totally familiar with by the end of my 7 weeks of treatment. Afterward I waited in the lobby and at 12 noon got on the Princess Margaret Hospital Lodge bus in time to have a nice lunch before my orientation session with the nurse. The lodge is quite amazing with lounges on every floor, large TV’s with comfy couches and chairs, excise and pool room, plus resource room with two high speed computers fro us to use and beautiful grand piano. After watching 2 hours of Dancing with the Stars and making a bunch of new friends it was time for my first night sleepover.
FIRST OF 3 TREATMENTS OF CHEMOTHERAPY
Today was my second radiation and my first round of chemotherapy with Cisplatin. For this procedure I stayed over night on the 18th floor of Princess Margaret Hospital.
After being hooked up to my iv monitor machine, a fluid drip was started which meant running to the bathroom almost every 10 minutes. Chemo started in the afternoon along a bunch of liquid drugs thought the iv to minimize the nausea and vomiting. I was fortunate and had no adverse reaction and by 7 am the following morning I was making tea for my room mate and myself. At last I was finally unhooked from my travelling iv monitor and so after breakfast I said goodbye to my roomy and now friend Joseph, and proceeded down to the basement for my 3rd radiation treatment.


John Lawrence and Joseph Whitfield









The radiation staff kindly took the following photos of the mask that I wear during the radiation process. I have 9 beams daily and the mask is to hold my head in a fixed position. In the actual process I would be laying down and then lined up with by laser beams so that the radiation beams are completely on target. Each patient has a mask formed to the contours of their face and at the end of the process, gets to keep it. (Only 6 weeks left)


I'm not sure which picture is the scariest
















(Click on the photo for a larger image and you will see some of the laser beams used for alignment)

Part 3: FEAR NOT

I have always disliked enclosed spaces and even now get a little panicky if my face is completely covered, so the thought of having to wear a mesh mask each time radiation treatment is done, sort of freaked me out to say the least. It seemed that each test I went through lead me to the inevitable – making my mask. That day arrived and as I lay down I said “Lord you have to help me get through this” or words to that affect. A warm mesh was stretched over my face and locked into position to allow it to form to the contours of my face. I could see and breath comfortably but the feeling of being trapped caused me to panic a little. I can’t say I remember talking to God about this situation, but I’m sure I did. Looking back, I now realize that a good size nose is a good thing. The young female technicians were amazing and talked me through the whole process which didn’t take nearly as long as it seemed to me. Colored lazar beams shined everywhere and the girls talked and put sticky patches on my mask to line things up. The mask was finally removed after a small mark was tattooed in the centre of my chest to further help with the alignment. I’ve been told that mouth and eye holes will be made and that after my treatments are completed, I can keep my mask. The next joy was having an MRI which is like being pushed into a long cigar tube. Ear plugs are provided to cut down on the noise which is like something out of star wars. As I was preparing for this experience, I remembered that my sister-in-law Sylvia had phoned a day or so earlier and had said FEAR NOT is written 365 times in the Bible - that's one FEAR NOT for each day of the year. After my mask experience, I knew the MRI would be a breeze, so I decided that I would FEAR NOT and use the time to pray. I spent the 15 minutes praying and interceding for everybody I could think of and towards the end of my ‘tube time’, I asked God to restore my relationship with my wife and son. We had not spoken for a number of years and within two days of that prayer, my son Michael was sitting in my living room. My relationship with my son and his mother has now been restored much to the delight of my daughter Candice.

It is when we see God answer a prayer so swiftly, that we know He will answer the other prayers in His perfect time. Isn't God good. "Give thanks to the Lord, for He is good; His love endures forever." (Psalm 118 verses 1 & 29)

Part 2: I WILL LIVE AND NOT DIE

After finding out about my condition, I attended a small Sunday service at the Church of the Blue Mountains just outside of Collingwood, Ontario. During a time of prayer for each other, Pastor Bruce pointed to me and proclaimed prophetically, “You will live and not die; you will live and not die.” Another friend who was at that very time praying for me added the phase “and will proclaim the works of the Lord.” Little did I realize at that time that Psalm 118 verse 17 says the same thing. “I will not die but live, and will proclaim what the Lord has done.” I grabbed onto that verse and have been repeating it daily since then. Two days later I was in Barrie at a Pentecostal service lead by evangelist Bill Prankard. At the end of the service Bill proclaimed over the entire church the words, “You will live and not die.”
My friend Bruce grabbed me to make sure I had heard the same words again and we left rejoicing over what I know and believe is words of life for me. I have started to feel a lot better in the past few weeks and even today after having three teeth removed, I still feel great. Praise the Lord

Part 1: SICKNESS = FEAR

Most of us get sick occasionally with colds, the flu and various other minor ailments, but to really get sick, well then fear of the unknown kicks in. All of a sudden, prayer starts in ernest and reading the Bible becomes an ongoing search for scriptures that bring comfort and the hope of healing. A constant search of our past starts, "Did I confess this or repent of that?" " Have I any unforgiveness in my heart?" As a believer in Jesus Christ, I know that sickness is not of God but a result of man's fall in the Garden of Eden. Nevertheless, when it happens to you or me in this case, I had to start a journey of faith and trust in God like never before.
As a self employed gardener, I have never earned a high salary but have always managed to get by, but now at the busiest and most profitable time of the season, I find myself unable to work due to treatments starting in Toronto. How will I manage? How will I pay my rent or my bills with no income other than a small monthly government pension? To my amazement, family and friends rallied around. Cheques and cash arrived to help with my regular bills and offers to help with my cost of expenses for accommodation and drug costs while in Toronto came for my sister and her husband in the UK. Two close buddies offered to run my grass cutting business and deposit the revenue directly into my bank account to help keep the bills paid. My brother and his wife sent me a laptop so that I will be able to keep in touch by email and MSN while out of town. Other friends offered to come by during the week and look after my very fat cat and a very close friend who is a nurse has taken time off work to drive me to Toronto for various appointments and help me understand some of the medical terminology. This support has been overwhelming and I would like to express my sincere thanks to all. John