Radiation Burns 28th July

Went in for my daily dose and was told to do something about "skin care". They have issued me with some new gel that is supposed to help with the 'sunburn' from the x rays.

Considering that it is a gel that is normally used on wounds I find this hard to swallow (so it's a good thing I have to smear it on instead).

Only ten more treatments to go!

With any luck the radiation burns will be the least of my problems!

27th July

Pete's Points

I have always wondered why it is the social work staff in hospitals seem to stay in their offices unless they get a referral. I suppose there is a form of etiquette that is engendered by the rules of the hospital and the internal competition among the various groups of workers.

It was no longer an academic question this morning.

There I was in the waiting room managing to make light banter with a number of the other patients and their carers, occasionally trying to inject a moment of light humour into their lives and basking of course in the wry smile, occasional guffaw of laughter, smirk or groan, that accompanied my efforts.

I found that one delightful patient and carer were unaware of the joys of having a Nurse Coordinator available within the hospital. Having left her pamphlet at home I had to resort to getting this practitioner's details from the nursing station.

Suffice it to say that she will in all likelihood receive a number of calls from the patients who sat in the waiting room and found out a little more about her services. Since I only completed a questionnaire this morning which is seeking to evaluate the service, it was delightful to be able to contribute to its use by others.

Some of the other patients were unaware of the Community Transport Service that may be available to eligible patients through the HACC scheme. So this information was then provided.

Another patient wanted to know what I had done to prevent those dreadful mouth ulcers that they had heard about. I was able to pass on to them the information about the Biotene products they could obtain from the nursing staff and make the additional suggestion (based on personal experience) that tongue brushing was an essential part of care for the mouth I had found useful, trying to avoid Mucositis.

By the time I was called for my appointed moment of destiny with the great linear accelerator I had already provided information and suggestions to at least five people.

I was quite pleased that my experiences to date with the various treatments was able to be useful to a number of others.

When you are in the middle of treatment, it is nice to be able to offer some of the lessons learnt to others, to help them to avoid the need to learn those same lessons in the school of hard knocks.

As usual the process went without a hitch and I found to my amazement that I only have 11 more treatments to go.

Tomorrow will be a nice day - blood tests together with the treatment and then the weekend - off for two days for good behaviour I guess.

Then the countdown really begins.

I am of course dreading the last three treatment days and the number of days that are in the middle and following this. The combination of both the chemo therapy AND the radio therapy knock me about dreadfully. Still, I guess it will be only a week or so and then, hopefully just a dim distant memory.

I threatened the staff today with the notion that I would bring my camera with me tomorrow so that they could pose for pictures that would be featured on this BLOG.

I had several interesting reactions - one of which of course was the one expected one, namely, "no thanks". Another which prompted me to ask for permission before I even tried to photograph the linear accelerator (though why I would want a photo of a machine did escape me at the time.)

Another one of the staff, who shall definitely remain anonymous, was happy to pose, but feared that publication of his picture on a BLOG might result in too many phone calls from interested persons who might want to meet and go out with him. I found that reaction most interesting.

Anyway we will see whether anyone wants to pose or not - they DO of course have the right not to.

That's all for today folks - more tomorrow.

The Method Actor's Views of Cancer 26th July

Pete's Points

I wonder how many people who are at home while they are undergoing treatment watch the "idiot box" from time to time as a way of either getting access to the news, seeing a movie (however old) or just finding something that will send them to sleep?

If you happen to be watching movies, have you noticed how many shows actually have at least one character in it who has cancer? The very volume seems to be more closely aligned with reality than ANY of the so called reality TV shows.

I mean have you ever seen anyone on "Survivor" who has cancer?

More to the point have you ever seen a show where an episode of "Survivor" actually features only people who have fought with the beast and won! Now THAT would be a show worth watching.

When I was in remission seeing so many people with cancer did not worry me too much, but now that I am back in treatment for a recurrence I seem to have a higher level of sensitivity to seeing and hearing the 'cancer' word everywhere.

I find it rather difficult to be surrounded by people who seem to be dying gracefully or otherwise from one form of cancer or another. I want to turn the silly thing off, but somehow my attention is drawn to the actor who has the role of the cancer victim.

I keep wondering if there is something I can learn from his or her performance? I mean where else are you going to find 'role models' who can present for your information ways in which to handle yourself when you have what is most likely a terminal illness?

You can I suppose, watch for the occasional hint of how others are coping by watching superstars like Kylie and Pavarotti. Alternately you can read the exciting story by that multiple winner of the Tour de France about how he overcame his cancer.

However I suspect that there is nothing like a bit of method acting by some of the world's most famous actors to set the stage (so to speak) about the range of options we have in our own behaviour when we go through the various stages of our own adventures with this disease.

I was particularly taken with performances that highlight how unselfishly we can mask our pain and our despair and think only of others.

I have no idea how to be that brave. I obviously need practice.

I know that in the depths of chemo therapy when it would be considered animal cruelty to say, "I feel as sick as a dog," I rarely have time to think about others. My entire universe seems to consist of fighting my body for some self control so that I do not make a mess over the clean bed or some other part of the house.

I also find it difficult to be considerate at a time when my insides are churning in pain or I am unable to breathe and simply panic.

My sense of humor which I think is at least reasonable, most of the time, seems to disappear into despair when I am so out of it on various nasty drugs that all I can think of is whether I wil actually survive the treatment much less the cancer.

Still you have to retain that sense of humour especially In the middle of having nursing staff searching in vain for a vein.

Watching Robin Williams as Patch Adams was simply good for the soul.

Having someone tell me about Dr Kubler Ross and her 5 stages of bereavement is simply not going to be as effective as actually watching actors go through the various stages and reach that wonderful stage of "acceptance" that is often portrayed as people who have an out of body experience and float off to the light to be with their deceased loved ones.

I keep hoping that my end will be that pleasant as those that I see on the tube.

Menwhile I keep learning how a good method actor handles the role and try to practice what I have learnt daily. Alas, I am finding that I am not really that good an actor.

Still, practice makes perfect - all I need is the time to get it right on the day!

By the way

My site seems to be becoming popular!

Since the 14th of July when I had 1732 hits by 25th July this had grown to 1851 when I last looked!

"WHOO!"

Yeah I know, "tell someone who cares!"

25 th July

"WHOO!"

That apparently will be my primal sound! Of course it could be WU or WOO if I try and speak with a Chinese accent.

Having met my Speech Pathologist today I learnt more about the vocal chords, the nerves that enable them to function and the trachea than I think I wanted to know. I always thought that speaking was something that comes naturally.

Boy was I wrong!

I had absolutely no idea that it was such a complicated process involving so many factors - and I still have not heard the full story!

Suffice it to say I think I passed at least some of the tests.

I could actually roll my "rr's". Thank God for French lessons!

I actually had heard about my diaphragm and actually was able to demonstrate that I could find it and expand it at will.

"WHOO!"

Then of course I was asked to do a few things where I am afraid that at this point I am a failure!

• I could not let out my primal sound of WHOO in either an upward or downward series of notes.
• I could roll my rr's but I could not use them in a way that mattered.
  

So there you have it, my homework.

If you are grreeted with a rrolling rr or a sudden and excitable "WHOO!" when you ring, please do NOT be upset! I am just doing my homework and you can be the judge of whether I am succeeding or not.

I will of course have my operation notes looked at, to see what damage was done to my nerves and from that information I am likely to be told whether there is much or little that can be done.

Meanwhile "WHOO!" (goodness that is so easy to write and so difficult to DO (or should that be WHOO?)

Having finished with speech therapy I went to get my dose of radiation and was told that I was actually being treated with X rays and not gamma rays! So I looked up this new information and found the following:

One type of radiation therapy commonly used involves photons, "packets" of energy. X-rays were the first form of photon radiation to be used to treat cancer. Depending on the amount of energy they possess, the rays can be used to destroy cancer cells on the surface of or deeper in the body. The higher the energy of the x-ray beam, the deeper the x-rays can go into the target tissue. Linear accelerators and betatrons are machines that produce x-rays of increasingly greater energy. The use of machines to focus radiation (such as x-rays) on a cancer site is called external beam radiotherapy.

Gamma rays are another form of photons used in radiotherapy. Gamma rays are produced spontaneously as certain elements (such as radium, uranium, and cobalt 60) release radiation as they decompose, or decay. Each element decays at a specific rate and gives off energy in the form of gamma rays and other particles. X-rays and gamma rays have the same effect on cancer cells.

So I have been deceiving or misleading my readers. If they are using a Linear accellerator then I am getting x rays and not gamma rays. Sorry about that folks!

As usual the staff providing the treatment were wonderful and actually asked about this BLOG today!

So I provided them with the address.

I also told them I had placed some of their pictures on the site and of course I was mistaken I had placed it on another of my sites

So here is the OLD photo from 2004 with my thanks. I will of course ask if any of them want to get a new image to replace this one!

Thanks Radiation Oncology Team at The Canberra Hospital

This is a small sample of the many wonderful folk who work at Canberra Hospital
with their giant x ray machines.

PS some of them look just the same others have changed hair styles but NONE seem to have grown older!

I will have to ask them if the x rays are like botox and prevent wrinkles!

Taking Care of your Voice

With the impending meeting with the Speech Pathologist coming fast I decided to practice my Boy Scout training and start to "be prepared".

Being an inveterate user of the Internet I of course started to look up sites that could inform me about what to do to take care of my voice.

One such site that I have found informative is http://www.nidcd.nih.gov/health/voice/takingcare.asp

Of there are things on this site that made me recoil in horror as I realised how many things I (probably along with millions of others) do each day that is NOT good for my voice. Equally I began to realise how many things I do NOT do that are good for my voice

I suspect that you really have to be motivated to follow all of the instructions about avoiding things that are bad for the voice especially when so many of the things that are bad for the voice feel so good or doing the things that are good for the voice when so many of those things are time and energy consuming.

Still, there is nothing like choices. Those of us who no longer have a voice to speak of (or to speak with) now look at the list, think about all those things that we did in our former lives that were not good for the voice and then ruefully explore whether we made the right choices or not and whether making changes this late in life are likely to help make things better.

Just check these out and see how many of them YOU do (or don't) every day without even thinking about it:

Tips to Prevent Voice Problems

• Limit your intake of drinks that include alcohol or caffeine. These act as diuretics (substances that increase urination) and cause the body to lose water. This loss of fluids dries out the voice. Alcohol also irritates the mucous membranes that line the throat.
  
  
• Drink plenty of water. Six to eight glasses a day is recommended.
  
  
• Don't smoke and avoid second-hand smoke. Cancer of the vocal folds is seen most often in individuals who smoke.
  
  
• Practice good breathing techniques when singing or talking. It is important to support your voice with deep breaths from the diaphragm, the wall that separates your chest and abdomen. Singers and speakers are often taught exercises that improve this breath control. Talking from the throat, without supporting breath, puts a great strain on the voice.
  
  
• Avoid eating spicy foods. Spicy foods can cause stomach acid to move into the throat or esophagus (reflux).
  
  
• Use a humidifier in your home. This is especially important in winter or in dry climates. Thirty percent humidity is recommended.
  
  
• Try not to overuse your voice. Avoid speaking or singing when your voice is hoarse.
  
  
• Wash your hands often to prevent colds and flu.
  
  
• Include plenty of whole grains, fruits, and vegetables in your diet. These foods contain vitamins A, E, and C. They also help keep the mucus membranes that line the throat healthy.
  
  
• Do not cradle the phone when talking. Cradling the phone between the head and shoulder for extended periods of time can cause muscle tension in the neck.
  
  
• Exercise regularly. Exercise increases stamina and muscle tone. This helps provide good posture and breathing, which are necessary for proper speaking.
  
  
• Get enough rest. Physical fatigue has a negative effect on voice.
  
  
• Avoid talking in noisy places. Trying to talk above noise causes strain on the voice.
  
  
• Avoid mouthwash or gargles that contain alcohol or irritating chemicals. If you still wish to use a mouthwash that contains alcohol, limit your use to oral rinsing. If gargling is necessary, use a salt water solution.
  
  
• Avoid using mouthwash to treat persistent bad breath. Halitosis (bad breath) may be the result of a problem that mouthwash can't cure, such as low grade infections in the nose, sinuses, tonsils, gums, or lungs, as well as from gastric reflux from the stomach.
  
  
• Consider using a microphone. In relatively static environments such as exhibit areas, classrooms, or exercise rooms, a lightweight microphone and an amplifier-speaker system can be of great help.
  
  
• Consider voice therapy. A speech-language pathologist who is experienced in treating voice problems can provide education on healthy use of the voice and instruction in proper voice techniques.

24 th July

Tomorrow is the BIG day. I finally get to see a speech pathologist. I would love to be able to shout HOORAY or something similar, but alas until she works out a treatment plan I am afraid I will just have to SHOUT in writing instead.

Let's hope that this meeting will prove to be the start of something that can really help to change my voice back to something resembling its former self.

I had a call yesterday and when I responded I was greeted as though I was my partner! I then had to suggest to the caller, as gently as I could, that while my voice was several octaves higher at present I was still a male person.

HOW embarrassing!

It was raining today and when I got into the hospital I was told (along with all of the other patients waiting for their turn to get a dose of gamma rays) that BOTH the machines had spat the dummy and gone off line. Apparently it was something to do with their cooling systems.

A suggestion from me that they take the machine outside and let it sit in the freezing cold rain did not go down well I am afraid!

So acknowledging that it would be at least an hour before things could resume I thought about what to do next.

I first had a brief meeting with my doctor, who acknowledged that I was explaining that it was becoming more difficult to swallow and handed me a new "joy" a bottle of stuff called Mucaine which has a wonderful bit of information on the side of the bottle "If the pain does persist we suggest you see your doctor!" BOOM BOOM! Full circle I guess?

I wandered off to the hospital cafeteria (a VERY dangerous act - I mean imagine actually PAYING for hospital food) and managed to get a croissant and a couple of books in the op shop and then wandered back to the waiting room. I had only managed to pour myself a nice cup of tea and have a bite of the croissant when I was called. (Yeah I know Tea and Croissant - an unlikely combination and the French will probably turn up their noses the next time I am over there - I mean who in their right mind drinks tea with croissants?)

By the way do people know the story of the croissant? Apparently a Hungarian baker in Austria (Vienna to be specific) baked the very first ever croissant as a way of commemorating the defeat of the Turks who tried to conquer Vienna. The crescent shape was designed to emulate the crescent on the Turkish flag and by eating the croissant people could symbolically eat the Turks.

I suspect that the French took over the symbol (mainly because it tastes nice) when they successfully invaded Vienna during the time of Napoleon. Ever since then it seems to be associated with France and breakfast.

So much for that little aside!

It's hard enough speaking with my voice at present much less through a mouthful of tea and croissant!

Anyway I was led off to be strapped down and given my daily dose and then off home again.

On the way to the cafeteria I was stopped by some of the staff at the hospital who shall remain nameless and asked if I was aware that when pay parking was finally introduced to the hospital that all cancer patients who did not hold pensioner concession cards would have to pay the parking fee.

Actually I was NOT aware of this and when I was asked what I would do about it, my ancestral memories of once having been trained in and worked in the field of Community Development imposed themselves into my consciousness.

I immediately contacted the person who runs THE CANBERRA ONE-STOP CANCER WEB-SHOP
and suggested to him that perhaps we could mention this on his web site. He indicated that he had already written to the major daily paper in this town and that his letter had been published.

His letter is very nice and restrained in my view.

Amomg other things he calls upon "the Minister Katy Gallagher to ease the burden on repeat visitor cancer sufferers in the ACT requiring treatment programs. These people should be provided with free parking while undergoing treatment."

What most people want to forget I suspect is that the current Minister used to be a senior officer for the trade union representing the biggest work force in the ACT namely public servants. In this role she was all for supporting the needs of her constituents especially in the area of health and safety.

Oh how time and circumstances can change view points!

Now the Minister is responsible for a great revenue raising venture for the government she works for and the needs of the constituents - well they can be left until the next election can't they?

Don't you worry Katy we will remember your kindness and your efforts to support us in your current portfolio when it comes time to vote again. All we have to do is to survive long enough and to encourage all of the people who are supporting us to continue to live at least that long to remember right along with us!

Of course if people want to see more about this Minister why not visit her web site at http://www.katygallagher.net/
or better yet write directly to her to express your point of view from her web site!

New Service at TCH

For those people who have not as yet managed to discover the Canberra One Stop Cancer Web Shop which is linked to this site I suggest that you take a look at it and find out exactly what services are available locally for those of us who are afflicted with one form of cancer or another.

A recent innovation which has not as yet been mentioned anywhere is the creation at the Canberra Hospital of a new service which employs a Nurse Care Coordinator for Head and Neck Cancers

According to the pamphlet provided:

A Nurse Care Coordinator is a specialist nurse who can help you and those close to you to:

• Adjust to the diagnosis of cancer;
• Navigate your treatment plan
• Obtain accurate information and support along the way

The Nurse Care Coordinator has advanced knowledge of cancers of the head and neck area and the services available in the community to support you

The Nurse Care Coordinator works closely with all members of the healthcare team especially medical staff, nurses, nutrition experts, social workers and speech pathologists.

If anyone wishes to contact the hospital about this I suggest that they call (02) 62443446

An Apology

For those of my readers who have tried desperately to get to my Travel Pages from the link on the left of my main page I wish to apologise. I managed to stuff up the URL connection on the main page and have now corrected the error.

Please feel free to have a look and then if you are contemplating travel in the near future and want to discuss whether or not I have been somewhere you are proposing to visit - give me a hoy.

Hiccups a possible sign of cancer: study (Reuters)

An interesting items from Health News

Wed Apr 19th 2006 at 3:40 pm ET

DUBLIN (Reuters) - Persistent hiccupping in addition to weight-loss and difficulty swallowing could be a warning sign of cancer of the esophagus, an Irish researcher said on Wednesday.

Professor Tom Walsh, of the James Connolly Memorial Hospital in Dublin, told a meeting of the Royal College of Surgeons in Ireland that some patients with esophageal cancer complain of persistent hiccups.

"Up to now, hiccups have not been recognized as a possible harbinger of cancer," Walsh told Reuters. . . . .

Oesophageal cancer is the sixth most common cancer worldwide with more than 400,000 cases detected each year, according to the International Agency for Research on Cancer in France. "

Pete's Points:
I don't really know whether to be pleased or devastated!

I was told this was one of the rare forms of cancer. If the information from France is to be believed it is becoming positively common!

July 21st

Saw the dietician again today with a student in tow.

We spent a few a few minutes before my treatment discussing wonderful subjects like the state of my appetite, what I was eating and drinking and my bowel movements.

Just the sort of thing you really want to do before being strapped down for the daily dose of radiation.

Still, she seemed to be happy with my responses and seemed OK about what I was eating expressing considerable surprise that my throat was still without the pain that had been expected. Personally I was abxolutely delighted and told her so.

The staff in the treatment room and I seem to have finally managed to reach a level of practice that actually facilitates a fast turn around time. I know exactly what is expected of me and I can actually wiggle my body into the correct position on the table so that the adjustments that need to be made are minimal. I was in and out in probably under five minutes.

Ah well, today is day 16 - only 14 more to go. Over the half way mark I now have to get used to counting down the days and hoping that when all of this is over I will be able to have some more time to do things other than worry about hospitals and treatment.

I have to confess though that looking around the waiting room I am not encouraged by what I see. There are so many people who come for treatment whose condition is far far worse than mine. I have this horrible feeling on a daily basis that this will be my lot if and when there is a next time.

I look at their frailness and their response to the treatments and just hope that if there is a next time I will not have to go through all of their pain and anguish.

It's all very well to talk about the Kubler Ross' stages of bereavement. What no one tells you about is how to endure the period between having reached acceptance and actually kicking on. If there was ever a need to understand the concept of purgatory or hell then I suspect that knowing you are dying and having to go through pain and suffering to get there is more likely to be worse than any purgatory can be.

Still, not really anxious to find out one way or the other at this point!

July 20th

I envy the people I see in Europe on the TV these days. There they are, playing hookey from work, soaking up the rays at a beach, frolicking in a public fountain or strolling about complaining about the heat.

A friend in England has written to comment on the heat and I have thanked her for blowing a little our way so that we no longer have -5 degrees overnight. I suspect that had it not been for her kindness we would be even colder than we are while she would have been enjoying the benefits of 41 degrees.

I have absolutely no idea why it is that the people in England complain about mere bagatelle like 36.5 degrees.

I mean this is just below normal body temperature. People go around all day every day trying to wear clothes and conserving their body temperature to maintain it at 36.6 so why complain?

There are places in Australia where that temperature would be considered cold!

Anyway enough of my commentary about the weather.

While others have been soaking up the sunshine I have been soaking up gamma rays. Friday will be the fifth day in a row for this treatment. I started to notice the rosy glow of a form of sunburn and expect that by the weekend I will have a more lobster like complexion than normal.

Had a friend who was in the neighbourhood call up and wonder whether I would be up to a visit I have to say that I was tempted but declined on the grounds that I am not sure that my immune system is up to it.

I will however confirm with the nursing staff whether my experience from the last time that I had to undergo treatement is really a useful benchmark for this round of treatment. The last time, my immune system was so compromised that I managed to get pneumonia just from going out into the backyard to feed the birds. Since the treatment regime is different this time I may be very wrong about the risk on this occasion and be in a situation where I am controlled by fears that may not be realistic.

If I find that the treatment is NOT making me vulnerable to all sorts of horrible possibilities I will let people know and apologise for being a recluse.

The treatment is progressing and is making me more tired than I seem to recall from the last time. Perhaps this is because in this current round there are no drugs given that act like speed!

I managed to get in early and came home early only to find I was so exhausted that I actually went to sleep around 2 pm and slept through to around 6:30 pm.

Amazing! I usually cannot sleep in the afternoons.

July 19th continued

While at the hospital today I asked whether or not my doctor had meant what she said about seeing me at least once a week. After some discussion I was told that in the past appointments with the doctors had been included in the appointment sheets that are created for the radio therapy but since this process has been abandoned there are sometimes slippages. In other words the nursing staff advised the doctor that I was there and she came and saw me and of course asked how I was.

I explained that I had found (so far) that contrary to expectations, I was still able to swallow without much pain, but that I had discovered that swallowing cold liquids was more difficult that any liquid that ranged from luke warm or better. The doctor was surprised that I had not yet experienced the pain she felt quite sure was going to come and suggested that I do not get too confident that I had escaped this side effect just yet.

She also explained that difficulty with cold liquids was due to a reflex action which somehow was triggered by cold liquids and not by liquids at other temperatures. Since I have learned a coping mechanism which involves tucking the neck down before swallowing I explained that this was what I was doing to avoid getting things going the wrong way and she smiled and told me that speech therapists usually teach this technique that I seem to have discovered.

I felt quite chuffed that I had managed to discover something on my own.

At this point we started to discuss the speech issues and I told her that while I had been practising I sounded quite odd in that the register was a lot higher than normal and that I found it difficult to speak and not clog my nasal passages which I thought meant that I was doing something wrong with the breathing. I expected that the meeting I would have with the speech pathologist would assist with uncovering what I was doing wrong and set me on the correct path. My doctor then suggested that part of the likely reason for this change in register was that in order to get at the tumour the doctor/surgeon may well have had to stretch the laryngeal nerve and that as a consequence the situation would not really normalise for some time until the stretched nerve recovered. She agreed that the breathing was an issue and asked if I had been able to produce a sound that was lower in the register. I indicated that depending on how I turned my neck and how I projected air towards the upper palate I could in fact get a louder effect and at a lower register but that this required considerable concentration and effort. We agreed to let the speech pathologist deal with this matter that in the interim I should continue to practice with the voice and see what did and did not work and then report on the outcomes at my first appointment.

She then asked if I was feeling any pain in the shoulder and chest areas and I advised that this was becoming more painful but not yet at the stage where I had to take pain killers to minimise the effects.

We then discussed my need to get blood taken in preparation for the meeting with the Chemo therapy oncologist and the need to change some of the appointments towards the end of the treatment regime to ensure that the required time between the chemo therapy and the radiation therapy was enabled.

I think that at the end of this discussion she was pleased with my progress to date and we met with the staff and arranged for both the blood test and also how we could best manage the combined treatment regime.

Managed to get home, tired as usual and after watching the old French movie "A Man and a Woman" I gratefully fell asleep for a little while. It's funny how simply getting some rays for a minute or two can make you so tired!

July 19th

This is a week in which each and every day is filled with radiation! A "daily dose" I guess would be one way of putting it.

For the rest of this week I will be able to have most of the day to recover from the daily dose as all of the appointments are in the morning.

I am delighted to be able to report that someone actually thought that my voice had become stronger. I must confess that I have noticed that the practice has been partly effective. However the pitch of the voice is at present at least an octave higher than previously. I am actually finding myself being annoyed by the sound of my own voice - I seem to be whining rather than speaking.

I am now making efforts to figure out how to lower the pitch! Bring on the appointment with the speech pathologist I say! I suspect that it has something to do with both breathing and also with learned behaviour that has guided how one uses the breathing and the vocal chords over the years. What was useful in the past is obviously no longer as useful today with the modified equipment. The question really is how to re-train what are entrenched behaviours. It is here that I suspect I will need an enormous amount of guidance and assistance.

The dreaded side effects of the treatment - namely the inability to swallow without pain have, as yet not arisen. In a brief conversation with one of the people giving me the treatment I was told that it might not happen since the radiation is being given a little lower than just in the throat. If this is the case then I had better start to think about no longer bulking up in anticipation of an inability to eat and start thinking about how to lose the poundage that I have put on. I think I will leave this to the end of the week at least and see how the five days in a row of radiation affects me.

Have to go for the time being - but will be back with more later in the day depending on what happens.

July 17th

Nothing much to report today.

The treatment times are changing and I am once again in the position of having to change routine and sleeping habits to accommodate the changed times.

I have to confess that the treatments are starting to have an unusual impact. When I got home today I felt suddenly very very tired and simply fell asleep soon after sitting down. I was woken by a phone call. I am delighted to say it was NOT someone asking me my opinion or wanting to sell me something or someone telling me that the call was being monitored for customer satisfaction. I am afraid that had it been one of these sort of calls I would have given the supervisors something to think about with my reaction.

Being at home and watching the news from day to day I am struck by how relatively 'fortunate' I am.

I mean to say, I am safe in Australia, getting treatment and looking forward to getting through this period and having at least some chance of surviving a little longer. Compare that with the plight of people in Lebanon and in the South America and elsewhere where sudden unexpected death arrives at the end of a missile explosion or some of the fall out from a volcano that has decided to erupt and can from one moment to the next extinguish life.

Knowing that you have a potential death sentence and having time to cope with that and being able to DO something about maximising the chances for survival is, frankly a lot better than being in continuing danger and being completely out of control.

Enough of my musing about world affairs! That is for a completely different Blog!

Met with my treatment coordinator today and she confirmed my meeting with the speech pathologist next week. Meanwhile I am receiving heaps of mail from people all over the world who have experienced similar problems and most of them are really helpful and full of hope that like them I will be able to regain at least some of my ability to talk properly.

One note however was really of great concern. This person wrote that if your vocal chords do not work then you can't breathe! That does not sound right to me so I will be following it up. In the interim I will do my best to keep breathing AND trying to vocalise.

July 15

Took a big risk today! I accompanied my partner to the movies!

I was sick for at least two hours.

Nothing to do with the cancer or the treatment thereof.

I am afraid that the Walt Disney production of "Pirates of the Caribbean - Dead Man's Chest" was perhaps the worst movie I have seen in decades! The only consolation was that the tickets we had pre-purchased are finally used up and I will not have to see more drivel like this again. I cannot believe that people actually got paid to do this movie! Hell I don't believe that people like me paid to SEE it!

Well, eleven days of treatment are over only another 19 to go!

Alas it will be prolonged as there are days requiring a rest called weekends, and maintenance days. So by the time that the middle of August comes around I should be finished with this latest part of the nightmare!

At present, I seem to be keeping the dreaded side effects to a minimum (he says swiftly looking for and touching wood).

Lord only knows how long this can last. So I still have my hair (well at least what remained of it from getting older and the last bout of chemo and radio therapy ).

I do once again feel the cold more than usual.

I have been finding that while I cannot eliminate the sinus problems I can at least minimise them by not overheating the rooms and drying them out too much.

According to George Mikes, (a Hungarian humourist) who wrote from England, I am using an English method of contraception to manage the effects of overheated dry rooms!

The hot water bottle.

I no longer seem to be able to sleep for long periods at a time - I seem to be able to cat nap at will though. Perhaps this is in keeping with my sincere intent to emulate a cat and try for a few more lives!

Hydration is a small problem. Drinking tea or coffee seems to be contraindicated as they both contain caffeine which is not really kind to the stomach and which actually helps with dehydration. There is I find just so much apple juice you can drink and as for the water from the tap - yeah, well it's fine for a few glasses a day, but frankly I do not want to get hooked on the fluorine! Still it has to be done.

Practising with the voice. There are times when I can actually produce real sounds again and then I deteriorate back into the hoarse whisper that seem to be the norm at present. (wasn't there a movie about a horse whisperer?).

Still thanks to the conversation with the Speech Pathologist the other day I am at least trying to exercise the vocal chord and there are a few minutes in every day when the damned thing actually works. So I guess moderate practice daily until my appointment and then I can start the hard work which is doing what I am told rather than the other way around.

That will be difficult!

That's really all for today and for the week end.

July 13th

Another day, another dose of radiation!

Well it just seems like that!

Managed to ask some people who belong to an oesophageal cancer discussion board about the vocal chord.

Even though some of their situations were different each responded with a definitive "Get an appointment with a speech therapist"

So being someone who actively listens to others with similar conditions and learns from their experience I arranged to have my 'case coordinator' start the process of getting me together with a speech pathologist.(well that's what they are called here!)

I even wrote to their association to see what their literature might have to say on the subject.

Anyway to cut a long story short - I have contacted the Speech Pathology department and an appointment has been arranged. Since this is at least a week into the future I did ask what it is that I have to do to maximse the chances that I will regain at least some of my ability to speak.

"Practise!" was the response. So far from resting the good old vocal chord I need to be exercising it. All in moderation of course.

You know there are times when you wish you had listened to your parents?

In my case I had a professional singing teacher in the family who always tried to teach me the basics of voice and breathing control. Like most children I did not take up the offer.

Boy, do I regret that now!

For those who are following this saga I regret that I have nothing more exciting to report as yet. Wait, there is one thing! Today was the tenth treatment which means that I am one third of the way through this nightmare!

Only twenty more to go!


Meanwhile I have also been told to get some blood work towards the end of the radio therapy so that the chemo therapy oncologist can ascertain whether my system can stand another round of his toxic chemicals.

On the one hand of course I hope that my system is up to it by that time. However there is a little portion inside that seems to be whispering: "No, no, not more of that stuff!"

Anyway nothing else of note at present so I will close and get some shut eye.

12 July - A Rest Day

Given all of the possibilities, that adage about so "far so good" still applies.

Still it is a long way to go before we get to the end of this cycle of therapy and given that the dose of residual radiation effects inside the corpus (presumably) increases with each treatment the question really is whether or not the predicted worst case scenarios simply have not yet arrived.

Apart from the sense of being really unwell that usually accompanies the chemo therapy and lasts for days after the treatment session is over, this round of treatment so far has produced fewer major problems. ('so far' - he adds with a sigh!).

For example, I have not had the "metal mouth" that seems to accompany the chemo.

If you can imagine that every mouthful of anything, tastes like you are trying to eat it through steel wool, then you have a small taste (pardon the pun) of what it really is like. Apparently something to do with liver function it is possibly the nastiest side effect of chemo therapy that I have ever experienced.

If you LIKE eating and enjoy cooking and preparing mouthwatering meals the most horrific thing that happens is that you can see the food, smell the food, but quite unable to eat the food. Now THAT is what I call torture! So thank goodness that this has not ('so far' - he says with yet another sigh) happened

The side effects or related issues that I have had (so far) are mainly:

The bleeding from the nose and the consequent blocked up sinus cavity that of course then results in breathing difficulty etc. and a second and possibly related issue seems to be the fact that I am obviously not adjusting the way I try to speak to the new reality that only one vocal chord works.

Now when I try to talk or croak or whisper (depending on how effective I am being) the very act of trying to talk seems to result in a further blockage of the sinus cavity.

Without access to a speech therapist, or an ENT specialist I suspect that what is happening is that I am somehow breathing the wrong way and/or the way I use expelled air to vibrate the once vocal chord that I have left is wrong for the current situation and actually makes the nasal congestion worse.

I was rung by a friend the other day and after a few minutes of conversation I found it difficult to breathe and when my nose started to bleed I needed to get off the line to do something about the mopping operation and to try and restore breathing.

I will of course report this to the people at the hospital and see if there is something that a speech therapist or someone else can suggest. I just hope against hope that the reason for this situation is simple and has something to do with the fact that it is winter and the air is dry. I do NOT want to hear that it is because there is yet another cancerous polyp or something in the head!

Last but my no means least there is a need for continuing and constant vigilance against mucositis

Be careful if you visit the site that is embedded in the link, the pictures are horrible! The real thing is worse than it looks!

This condition is something I experienced in the last round of treatment. It is totally debilitating and frankly, dangerous. So at present oral hygiene is paramount in this household I can tell you. Having had the offending condition in the past means that you do everything to try and ensure that it does not happen again.

Apart from that there is of course the tiredness and the broken sleep patterns that seem to accompany this process. The only GOOD thing about my former life as a workaholic is that I KNOW how to cope with individual REM cycles and only four hour per night sleep patterns.

Woe betide the person who is 'normal' and needs his/her 8+ hours of 'beauty' sleep.

Having learnt to cat nap is possibly one of the most useful lessons I have picked up over the working life it seems.

Today is a rest day!

No, not for me, for the Linac 2 machine.

Thank goodness it also seems to need its restorative sleep otherwise referred to as 'maintenance' in this case.

I have to say though that it is a toss up between being glad not to have to go for another round of treatment and annoyance that it merely delays the process by yet another day. Still I am glad they are maintaining and recalibrating the machine - just imagine if they did not do this regularly. Would YOU want to be the one who gets the wrong dose?

Not this little black duck!

12 July - A Rest Day

Given all of the possibilities, that adage about so "far so good" still applies.

Still it is a long way to go before we get to the end of this cycle of therapy and given that the dose of residual radiation effects inside the corpus (presumably) increases with each treatment the question really is whether or not the predicted worst case scenarios simply have not yet arrived.

Apart from the sense of being really unwell that usually accompanies the chemo therapy and lasts for days after the treatment session is over, this round of treatment so far has produced fewer major problems. ('so far' - he adds with a sigh!).

For example, I have not had the "metal mouth" that seems to accompany the chemo.

If you can imagine that every mouthful of anything, tastes like you are trying to eat it through steel wool, then you have a small taste (pardon the pun) of what it really is like. Apparently something to do with liver function it is possibly the nastiest side effect of chemo therapy that I have ever experienced.

If you LIKE eating and enjoy cooking and preparing mouthwatering meals the most horrific thing that happens is that you can see the food, smell the food, but quite unable to eat the food. Now THAT is what I call torture! So thank goodness that this has not ('so far' - he says with yet another sigh) happened

The side effects or related issues that I have had (so far) are mainly:

The bleeding from the nose and the consequent blocked up sinus cavity that of course then results in breathing difficulty etc. and a second and possibly related issue seems to be the fact that I am obviously not adjusting the way I try to speak to the new reality that only one vocal chord works.

Now when I try to talk or croak or whisper (depending on how effective I am being) the very act of trying to talk seems to result in a further blockage of the sinus cavity.

Without access to a speech therapist, or an ENT specialist I suspect that what is happening is that I am somehow breathing the wrong way and/or the way I use expelled air to vibrate the once vocal chord that I have left is wrong for the current situation and actually makes the nasal congestion worse.

I was rung by a friend the other day and after a few minutes of conversation I found it difficult to breathe and when my nose started to bleed I needed to get off the line to do something about the mopping operation and to try and restore breathing.

I will of course report this to the people at the hospital and see if there is something that a speech therapist or someone else can suggest. I just hope against hope that the reason for this situation is simple and has something to do with the fact that it is winter and the air is dry. I do NOT want to hear that it is because there is yet another cancerous polyp or something in the head!

Last but my no means least there is a need for continuing and constant vigilance against mucositis

Be careful if you visit the site that is embedded in the link, the pictures are horrible! The real thing is worse than it looks!

This condition is something I experienced in the last round of treatment. It is totally debilitating and frankly, dangerous. So at present oral hygiene is paramount in this household I can tell you. Having had the offending condition in the past means that you do everything to try and ensure that it does not happen again.

Apart from that there is of course the tiredness and the broken sleep patterns that seem to accompany this process. The only GOOD thing about my former life as a workaholic is that I KNOW how to cope with individual REM cycles and only four hour per night sleep patterns.

Woe betide the person who is 'normal' and needs his/her 8+ hours of 'beauty' sleep.

Having learnt to cat nap is possibly one of the most useful lessons I have picked up over the working life it seems.

Today is a rest day!

No, not for me, for the Linac 2 machine.

Thank goodness it also seems to need its restorative sleep otherwise referred to as 'maintenance' in this case.

I have to say though that it is a toss up between being glad not to have to go for another round of treatment and annoyance that it merely delays the process by yet another day. Still I am glad they are maintaining and recalibrating the machine - just imagine if they did not do this regularly. Would YOU want to be the one who gets the wrong dose?

Not this little black duck!

Update 11 July

Went for the next round of treatment.

I simply LOVE lying under that big machine with my head and shoulders strapped down inside a mesh mask knowing that I am receiving bursts of gamma radiation.

I am of course kidding!

Unless you are a masochist this is NOT fun! However, I hope that it is effective or at least will be.

I have noticed that there is the beginnings of what was forecast, namely the commencement of pain associated with swallowing. I will keep an eye on this and try and minimise the impact by modifiying the food intake to include high levels of "squishy" food so that there is as little irritation to the feeding tube and associated areas as possible.

Found at least some temporary relief to the bleeding nose problem - dissolve a little ( and I DO mean a little) Vick's Vapour Rub in a bowl of boiling water, lean over the bowl, taking care to create a tent like structure with a towel of the head and the bowl and then gently inhale the steam, at times through the nose and at other times through the mouth.

The result seems to be to at first clog the nostrils - with appropriate and yukky bleeding. This can be removed by GENTLE blowing of the nose and then using some cotton buds gently drying out the inside of the nasal passages. Another round of the steam inhalation follows and if necessary another round of the careful and gentle swabbing out.

I tried two rounds of this 'treatment' last night and found that after the first round I managed to get around three hours of uninterrupted sleep and after the second round managed to get five hours of uninterrupted sleep AND be in a position to get up and get about my business with the nasal passages still sufficiently clear to enable effortless breathing.

I suspect that by trying to do this on say a four times a day basis - perhaps interspersed with some saline spray through a nebulizer provided by the hospital when I go in for the radio therapy, and in combination with maintaining hydration at a high level I may get sufficient relief to actually get through the day without too much trauma.

I will keep people posted on whether this hypotethis works - or not.

Meanwhile I am continuing in the pursuit of more information about the world of this horrible illness. I have been pursuing leads concerning new drugs and treatment modalities.

I am looking into the use of something called AVASTIN.

There is some interesting information available out there, but of course anything I read on this subject merely creates an opportunity to ask the oncologists about it and elicit any professional information they would care to impart.

Some reflections

As I understand it what the oncology team are trying to do is to supplement the surgery by cleaning out the area from which the tumour was removed to makes sure none of the cells which were cancerous survive and to prevent the recurrence of the tumour in that area at least.

They appear to be using what is known as 'radical' treatment rather than "palliative". ie it goes one for four to six weeks rather than massive single doses to alleviate pain or remove the mass quickly. This is reassuring at least to the extent that their whole treatment plan seems to suggest that I am NOT on my last legs.

Now for these side effects. After a lot of reading . . .

I know that radiotherapy to mouth and throat will cause some soreness (otherwise called mucositis). This usually starts halfway through treatment, and is at its worst towards the end of treatment, but can persist for some time afterwards. (this is the part that of course makes me really squeamish) It is important to keep the mouth clean, with regular soft toothbrushing, dental floss, and mouthwashing and believe it or not brushing the tongue to remove plaque.

Apparently once mucositis has started, treatment to prevent secondary thrush infection is often given. So avoiding the onset is obviously a good strategy. It is also important (apparently) to maintain a good nutrition, and avoid smoking and alcohol.

So I am trying to ensure that I do all of these things to minimise the risk of mouth ulcers etc.

Alas what I am looking for is how to stop the bleeding in the nasal passages and the subsequent blockage to my breathing. The hunt for THIS answer continues! I am afraid that the more I read the more frightened I can become at the possibilities.

However there is this from a site http://www.bcm.edu/oto/grand/51492.html

Epistaxis
Approximately 5-10% of the population experiences an episode of active nasal bleeding each year. Fortunately, fewer than 10% of these patients visit a physician for this problem and only one of those ten will require hospitalization. The incidence increases with advancing age, during the winter months, and epistaxis is more common in males.

Now that SOUNDS like what is happening in my case - but I will read further.

However assuming that this is something I CAN do something about some suggestion are the following:

Warming and moistening the air you breathe are two of the many functions of the nose and sinuses.

When heaters are turned on in the winter, air conditioners are used in the summer, or after nasal and/or sinus surgery of any type has been performed, the nasal and sinus mucous membranes become dry and irritated. The cilia (hair cells of the lining membrane of the nose) may die so that normal nasal secretions do not get swept to the back of the nose for swallowing, but stay in the nose and become crusts and scabs.

The following are ways to help improve and normalize the moisture of the nasal and sinus mucous membranes in order to minimize nasal dryness, crusting and bleeding.

Moisture Inhalation: Moistening the air that you breathe will help to minimize crusting and scabbing of the nose, as well as decreasing the risk of developing nasal bleeding. Breathe steam in through your nose 2-4 times a day or more. Listed below are ways you can humidify the air that you breathe.

Turn the hot water on in the shower and either take a shower, or sit in the shower room in order to inhale the steam.

Fill a sink with hot water and/or leave the hot water running. Place a towel over your head to make a steam tent and inhale the steam.

Boil some water over the stove and stand over the pot so you can inhale the steam.

Sit close enough to a vaporizer or humidifier so you can inhale the mist.

Saline Nasal Irrigation: Use normal saline (salt water) in your nose at least 2-4 times a day. You may spray the saline into your nose, sniff it from your palm or irrigate it into your nose with a large syringe. Maximum contact is obtained by lying on your back, on your bed, with your head hanging upside down and instilling saline into your nose.

You may mix your own salt water by putting ½ teaspoon full of salt in a 12-oz. glass of water.

One suggestion which I have read is to moisten the inside of the nose with KY jelly - I seem to recall lots of uses for this substance, but until today I have not ever thought of using it in that way! Apart from a moment or two of severe embarassment - I suppose it can't hurt to ask about this option. The worst that can happen is that I get a belly laugh and some comments about this substance normally being used elsewhere and for very different purposes.

I will now try the steam stuff and then hopefully get back to sleep (perchance to dream)

July 7th and 8th

July 7th was an interesting day.

My expectation was that I would finally get over the worst effects of the chemo therapy and be in a position to lose the queasiness associated with the chemicals. The theory was good. I did not take any anti nausea medication the day before and so woke up feeling better.

In that jolly mood I managed to scrape together some breakfast of a Weet-Bix like cereal that on the advice of the nutritionist I made with warm milk and sugar for a change. I have to tell you all that the little cereal thinggies seem to act like a sponge. They actually absorb around 200 to 250 ml of milk. No wonder the nutritionists tell you to drink lots of fluids when you eat high fibre cereals.

To tell the truth with some sliced banana the final 'dish' is quite palatable. What with the price of bananas these days it is of course a luxury food.

However in looking at the presentation I have to say that it appears more like baby food than something that should be fed to adults. Still if you think about what happens to it once it gets past the lips - who cares! It's nourishing.

It was a very cold night in Canberra and with temperatures outside going down to minus 4 degrees Celsius the house can get quite cold during the night unless the heating is maintained. If you maintain the heating then it can also get stuffy. So it's a choice of impacting your sinuses and finding it difficult to breathe or putting on more layers of clothing to stay warm.

I am experimenting with both options to see which is more comfortable. I am sure that there is a middle ground that will be useful in the end. Of course there is always the hope that spring and summer will come sooner than later and resolve the problem that way. Maybe it is from such wistful thinking that the phrase "hope springs eternal." originated?

Discussed the bursting capillaries in the nose and as expected there was a great deal of sympathy, but not much in the way of suggestions on how to fix the problem. So once again I am working on my own solutions to this little annoyance. I suspect that whatever makes up the sinuses swells with the heat instead of constricting and so blocks the system. Have to figure out a way to deal with this.

Had a nasty turn yesterday when my left hand side suddenly locked up - frozen in a muscle spasm (I hope).

Just managed to get on the phone to my partner and just in case it was something OTHER than muscle lock up - asked if she could swing by and have a look and possibly to take me to my appointment for the daily treatment which was at 12:05 as I was really unsure whether I could even try and drive myself.

Being the wonderful person she is - she was home in a flash. Thank goodness it does not seem to be anything other then muscle spasms and with some heat from a heat pack or hot water bottle the impact became progressively less.

I was able to go to the treatment session and was kindly driven there and back. It did not take long and we could actually enjoy a lunch together before she had to run back to the work place and add additional hours of work to her already busy schedule to make up for my issues.

While at the oncology unit I did manage to get some comments from the staff about the 1998 French World Cup sweatshirt I was wearing. It's interesting to hear people's views on the French. Most who do not speak a word of French and have visited Paris will tell you what an arrogant bunch they are. Those who do speak at least a smattering of the language and have traveled outside the main cities can also tell you about Gallic arrogance, but will, under questioning, admit that they really are nice folks once you get to know them and they realise that you at least TRY and speak their language when in their country.

One of the staff at the treatment facility asked why I was interested in the French since I was not from that country - was I? I explained that I was actually from Hungary, but had traveled around France and had managed to learn the occasional word or two. He asked for a quick demo and so I addressed him in French and even with my whispering croaking output I gained the impression that this was a good enough answer. Since he is from one of the former Yugoslav states he was most surprised to learn that some of my relatives had actually fought with Tito's partisans during WW2 and that my family had connections back to the Balkans through which I suspect they migrated to Hungary from wherever that side of the family originally came from.

So what's the good news?

The good news is that I am still able to swallow. So getting food into me is at present not all that much of a problem. I guess the adage has to be - eat now for tomorrow you die(t). Still a little queasy, but tolerable. I can always go back to the medication if all else fails I suppose. The other good news is the Pharmaceutical Benefits Scheme. I actually looked at the packet of this anti-nausea medication yesterday. It has on it the 'retail' price and the subsidised price. For those of you who have not had this experience and live in Australia take a look at your prescription medication. In my case the normal price for the tablets I was prescribed was in excess of $180. The actual price after the subsidy was closer to $30.

So if ANYONE in politics threatens to get rid of the Pharmaceutical Benefits Scheme just think of the price differential for this ONE drug and consider the impact on your family in the event that you or they get sick.

If nothing else will get you on the barricades to fight for what we already have - this should!

One of the impacts of radio therapy seems to be that I am continually feeling tired.

Found myself falling asleep around 2:30 and only waking up at around 7 pm still groggy! Then there was a brief period of being awake only to be lulled to sleep again then bolt awake again at around 3 am.

So I am writing this while I am still relatively awake and then will go back to get yet more shut eye.

I suppose that some people might see this whole thing as a wonderful way to catch up on their lost sleep over the last few months. Well - if anyone is of that opinion - come on down and let's discuss a brain or a body transplant! I would rather have a healthy brain and body and be sleep deprived than the current situation.

More when something interesting happens!

A further update on July 6th

Met with the oncologist today - a surprise. I guess she will review the treatment on a weekly basis to see how I am doing.

Told her about all of the issues that I am having and then asked what I think is a most important question - namely what value does this treatment really add to what is happening to me? I am sure that I did not phrase the question either as simply or as well as this, but at the end of the day that is really what I want to know about.

At present - apart from the fact that I have a cancer and am recovering from the operation to remove the latest lump, I was feeling relatively well before the chemo and radio therapy started.

If there is no real hope for a cure or at least massive remission for an extended period, then the question really is - WHY am I going through all of this pain and anguish and allowing what level of health I have to deteriorate to a state where each day I become weaker, more exposed to all of the side effects of radiation and of course normal 'bugs' in the generic atmosphere that can attack an immune system that is defenseless due to the combination of chemo and radio therapy 'treatment'?

The response was of course more generic that could be hoped for - but at the end of the day quite explicit. The chances (as I already knew) are that people with this kind of illness are more likely than not to develop metastases in the lungs or liver with the net result that once there the illness progresses rapidly to the conclusion - namely death.

Thus what I think I heard the doctor say was that really what is happening is a delaying action and one which is really cleaning up the area where the tumor resided to render it inhospitable for another return bout in that specific area. However, for whatever time is left (and this is important because it suggests for the first time that since there has been a return of the tumour there is no real hope that this disease will abate and end on a positive note) there are of course choices between taking the treatment that MAY have a chance of reducing the risk of further early recurrence or taking the risk of staying as well as possible for as long as possible and then hoping that the end run is quick and made as painless as possible.

I have to confess that I have not really thought about things in this light. The real issue is what questions does one ask to enable a useful risk management plan to happen? I suspect that this is something that will occupy my time for the next few days as I try and ask yet another question which is - if I stop the treatment NOW will this be more or less useful than finishing it off to the end?

Unfortunately the decision making has to happen quickly because the further one takes this treatment - the fewer options that remain available!

As usual I loathe trying to make a decision based on such inadequate information. I mean what are the real choices? Have a bit of health NOW and enjoy it while it lasts or opt to go for feeling ill now in the hope that following a recovery from the treatment the period of well being is restored and lasts longer than it would have.

Whichever way it goes it really is a crap shoot!

Still - that's the question and one that I suspect has to be confronted.

I just hope that there are some people out there reading this missive who have had to confront this problem in the past and who have some suggestions on the factors that need to be considered and will be kind enough to drop me a line. Frankly, at this point, I have insufficient data.

July 6th Update

Started to feel the effects of the radio therapy yesterday, I think.

Feeling tired and listless and it seems that the walls of the capillaries in the nasal areas have been affected to the point where a nose bleed is becoming a regular event. Not pleasant - something that I will have to discuss with the medical people to see what if anything they can do about it.

I suspect the answer will be something inane like "when you can't breathe through your nose DO NOT BLOW! Just open your mouth and hope for the best." Then again maybe not!

Driving to the hospital yesterday was an interesting experience. As I was pulling into the parking lot I suddenly found that the vision in one eye was affected to the point that by the time I had parked the car the visual acuity of that eye was severely impaired.

When I asked about this in the unit I was told that the drug that they are giving me to help with nausea has a nasty side effect - if you have migrane headaches then they can tend to increase the frequency. Terrific!

One of the issues that I have discovered along the way is that the loss of visual acuity is brought on by migrane headaches that somehow do something to the nerves and blood vessels in the eye and can result in a temporary distortion and/or loss of vision.

So much for continuing to drive to the hospital or indeed anywhere else for the time being!

I am making arrangements for community transport to start taking me to the hospital and picking me up. They will commence on the 10th of this month and are sending me a package of information on what I have to do etc.

Wonderful! Another piece of independence coming just to a temporary end (I hope).

I think that one of the things that is perhaps worse than anything else is to become dependent on others. The sense of helplessness as one function after another either ceases to be viable or is so unreliable that it would be sheer folly to expose both myself and others to the possibility of something going wrong.

The good things yesterday:

1. finally found a magazine in the waiting room that did not date back to 2004, but was actually something published in 2006. If you are a 'regular' in waiting rooms the diet of fresh reading matter is something that I suspect medical people rely on to keep the patients regular and on time. After all, if you arrive early there is simply nothing to DO anymore unless you also want to burden yourself with additional stuff that you take to the appointment - like a book or if you are more modern I suppose an iPod or something similar
2. met with the dietician who kindly went through all of the information in a pamphlet letting me know the basics of the main food groups (what a surprise) and provided some information about worst case scenario planning in case all of my ability to swallow suddenly closed off. She actually approved my strategy of bulking up now in case I need the extra fat-energy conversion later. So with an eye on the balance between eating too much and of the wrong things so that the reflux is not initiated I can once again eat lots of protein. I feel like a bear getting ready to hibernate for the winter. Alas the problem is that it is already winter and with the listlessness that seems to be coming as a companion of the radio therapy motivation to "eat and be merry for tomorrow you diet" is a little lacking. Still - came home and went into the kitchen to make enough food to last for a few days. Have discovered the joys of new Pyrex dishes that have plastic instead of glass lids. These form exceptional cooking and storage container options and are eminently stackable. So the fridge at present contains food for days. I hope that my partner is grateful for the fact that she can come home from work and have a restaurant like choice of foods that are available straight from fridge to microwave to table.
3. Managed to communicate with people in spite of "the" vocal chord starting to give signs of overuse syndrome.
4. Asked about the costs of the community transport and discovered that it is cheaper than either the cost of the petrol or the cost of public transport! Now THAT is a community service! Mind you they did ask intrusive questions like - "are you a pensioner?" Then when I answered in the negative they persisted by asking questions about any concession cards. Then again, they did respect my rights by also asking whether I would be OK about the information I provided going into their computer system. Of course there is an interesting question which I did NOT want to explore - namely what would have happened to my request for the transport if I had responded in the negative?

Well that's about all I feel like saying today about my health! If anyone wants to see my comments on other matters relating to broader issues they will simply have to catch up with my other Blogs that are broader based.

Waking up this morning did produce ONE good thing though - I can go to the hospital for treatment today wearing the sweatshirt I got in 1998 when France last won the World Cup and chant (well OK just whisper) "La France en final" as I suspect millions of others are doing in between watching the Tour de France, work or enjoying the benefits of the European summer.

For those of my avid readers who follow the Italians, I reiterate - "La France en final!"

Unfortunately I have too many colleagues who support the Italians to make more disparaging remarks about the effectiveness of their 'diving' techniques!

Progress Notes July 4th

Well, for want of anything better, we in Australia get a jump over the Americans on their Independence Day - it already July 4th here while they sleep through July 3rd.

Today marks a high point in this latest round of treatment - the first four days of chemo therapy in combination with the radio therapy are over. So in one sense (and at least for the time being) it is also my personal 'independence day'. I no longer have to endure toxic chemicals being passed into my body while I sit patiently allowing this stuff to enter the blood stream drip by drip. It will now be a terrible two days while the main effects are leached OUT of the body through the normal means and then I have to face the gruelling commute - daily - to the hospital to get radiation therapy.

It actually takes longer to get there, park and get back than it does to receive the treatment. I have already asked what I am looking forward to and have been told the brutal truth (after the regular bull that it is of course different for each person) that in the third week (ie about half way through the 30 days of this treatment) I will have exceeded the tolerance dose of the radiation and all sorts of possible pain and anguish will commence or at least is likely to commence from then on.

What to look forward to?

Lack of sleep, pain, inability to swallow, possible side effects that I do NOT even want to think about and of course the reality that I am going to be a literal pain in the neck to my loved ones as they try hard to be nice and I will be out of control of everything, but my own reactions to what I am experiencing.

It is simply amazing how introverted and selfish one can become when in the 'sick mode'

Being a carer I suppose if probably the hardest task in the world and if the person being cared for is someone who has been totally independent all of their lives and unable to really ask for any support then I suspect that the task is made even harder.

I know that in my case whenever I am asked what I want or what I need - my honest answer is that I have no idea! I know what I am feeling and I know that above all else what I would really like is to get back to feeling 'normal', but since this is only possible with a complete body transplant - not something they have perfected as yet - (at least not to my knowledge - though some politicians I see around the place seem to have been re-cycled a lot) I guess I do not really know how to answer the question.

At present I am taking every opportunity to do the things that I can manage to do and one of those is to record some of the thoughts that I am having. Being at home and really unable to speak with the lack of mobility of the vocal chord that I have left means that being able to record the thoughts in writing and then at least publish them so that anyone who cares to look can see them is a form of catharsis or therapy.

There is little else that one CAN do besides making sure that the various aspects of hygiene are followed, that business that needs to be done is done and that as time passes each moment is savoured and used to the full.

Meanwhile I will eat and drink and be merry while I can - because as sure as God made little apples THAT state of being is not going to last!

Progress Notes - July 3 2006

I guess I have to provide the good news with the not so good news in these reports.

I started the latest round of treatments combining chemo and radio therapy just the other day and already have some renewed experience of the issues that arise with this regimen. The first two days of the combined chemo and radio therapy were doable. The weekend in between was painful in the extreme - in spite of the anti-nausea medication (stuff that really worked the last time I was going through all of this) on this occasion while it also works - I suppose, to minimise the effects there are still consequences from deliberately putting cyto-toxic materials into my system. A generic feeling of unwellness being just the tip of the iceberg. Nausea, while controlled, is there and it certainly does not lead to any ability to sleep easily.

While the medication is being given the dexmethasone manages to relieve some of the arthritic pain and the additional medication is of assistance in controlling the nausea. However in the roughly 48 hours following the cessation of the application of the chemo therapy two of the three drugs are also withdrawn with the result that the effects of the 5FU are more 'dramatic', if this is a possible expression.

There is simply no way that I am able to do anything more than try and cope with the side effects and it is only the knowledge (hope really when you are going through the process) that the effects WILL be reduced and that by the time that the third day arrives following the cessation of treatment some things will be returning - if not to normal, at least some semblance of more manageable normality.

It is thus really a problem to go back to the oncology unit and once again bare the arms to receive once again some more of the dreaded juice because there is now certain knowledge - reinforced by immediate experience that the side effects will not only start again - but once again continue AFTER the cessation of the treatment and THIS time - unlike the weekend break - there is not going to be any respite from the radio therapy.

A daily dose of gamma radiation (at least I presume it's gamma radiation) is poured into the body - in my case from four directions during the treatment period.

Let me describe to you, dear reader, the 'joys' of getting radio therapy these days.

As some of you may recall at the planning day I was fitted with a mesh mask which when heated moulded to my face shoulders and neck. It is this mesh which enables the radiologists to mark out exactly the spots they use for the targeting of the machinery.

There is a schedule of appointments organised and during the dual treatment the radio therapy has to be four hours after the chemo therapy to be at its most effective. Apparently there is a 10% additional efficacy for the whole treatment if they are combined in this way. I simply accept this data and because I want to maximise my chances of a positive outcome I am willing to endure the trials and tribulations that emerge as a result.

But. I digress.

Once you are called and escorted to the room in which the machine resides and underneath it is this highly mobile platform which is then set up to receive the patient. In my case I have to take off my shirt, glasses and remove any dentures I may have and then slip up on to the platform which has a headrest and a funny kind of board at the feet with two handles attached. When one wriggles into shape on the platform one is asked to grab hold of the handles and this act seems to immobilize the shoulders and keep the body more or less in the same position. The mask is then slid onto one's face and clipped into place. Measurements are taken to ensure that the locations and distances are as prescribed in the treatment plan and then the technicians leave the room with a polite "we will be back soon' and you are on your own with the machine.

I do not want to try and describe to you what it feels like to be strapped down on a platform virtually unable to move and then simply watch and hear the machine as it's pre-programmed directions, timing etc are all initiated.

While you lie there it seems to have a mind of it's own as it starts in the first location and send out the prearranged amount of controlled radiation for the prearranged number of seconds. Then it adjusts itself along the lines it has been programmed and rotates to the next location and the process commences again.

This takes place - in my case on four different locations for around 20-20 seconds for each burst - I sat around this period because I cannot look at my watch and since my heart is pounding along partly in fear and partly in anticipation I suspect that my sense of time is dilated.

Staying as still as possible is of course pro-indicated - after all there is no way you could possibly WANT to irradiate areas of the body that are NOT on the plan.

When the treatment is finished - it is likely that there are either digital images taken and/or xrays I guess to monitor what has been happening.

These are not pictures that will ever hang in MY rogues gallery I can tell you!

Then it's lowering the platform a quick exercise of the stomach muscles (if you have any) and off the table. Get back into the gear you came with, replace the items you have taken off and out the door with a cheery wave to the staff with some inane comment like - "Same time same bat channel tomorrow I guess?"

The it's back to the car park and to the car and the lonely drive home.

I suspect that this routine will vary over the next few days and weeks as I become possibly less able to fend for myself and need some assistance to get into the hospital for treatment and back home again. There is already a theoretical plan for this - but alas the people in the Community Services area who are supposed to ring to firm up the details have not yet been in touch - so with each day that passes the anxiety about this increases. Still, it's too early to worry just yet and since I believe in the concept of 'just in time planning' I am not worried - yet. However as the days pass I have already selected the day on which I will initiate preventative action to try and ensure that the services are there as planned or that I have an alternative way of getting to and from the treatments.

I look forward to Friday of this week by which time I should at least be getting over the impact of the chemo therapy even though the stuff will actually remain at least at residual levels within my body for at least 3 months!

Thus since at the end of this treatment regime I will have to see whether I can endure another 3 days of the chemo stuff along with the last days of the radio therapy it is actually another FIVE days of endurance until the major side effects disperse and by that stage the Lord only knows what other negative side effects will have to be endured. Still that's too far ahead to worry about today - so on the basis of one day at a time or one step at a time I am sure I will at least try and write about exactly what happens when it does, rather than speculate.

That's all for today folks - except to say that after the treatment I did go and shop for vegetables and associated food stuffs so that I can ask my partner to try and emulate my mother's chicken soup. She swore to her dying day that it was something that would at least soothe the impact of illness even if it did not have any magical medicinal properties.

About my voice - I am still barely able to do more than whisper and this not for terribly long periods. So I apologise to those who have wanted to call and chat and have found me 'indisposed'. It's not that I don't WANT to talk with you - it's just that at present I can't.

An update as at the end of the financial year

Just started a course of Chemo therapy as an aid to Radio Therapy. Four days of 5FU with Folinic Acid, Dexmethasone and Ondansetron together with a daily dose of gamma radiation some four hours after the infusion of the various jungle juices.

Then 23 more days of radiation each and every day except weekends and of course the occasional Wednesday when they have to bring the machines off line to maintain them and then three more days of radiation once again proceeded with the Chemo therapy regime.All in all 30 days of gamma radiation.

I suspect that I will forever after this be easy to locate anywhere on the planet - all people will need is a Gieger counter. (Wasn't there a comic book where the hero got excess gamma radiation and was transformed into the incredible Hulk?)

Apparently the chemo is supposed to increase the effectiveness of the radiation treatment by 10% (according to the literature)

So it's back to the regime of having few white cells left and so being exposed to any and all germs in my environment, with no resistance, I suspect that what little hair I had left from the last time will once again fall out and will require beanies during the winter. Still there is an up side - it reduces hair cutting costs which have gone through the roof!

The one good thing so far that I have noticed is that the dexmethasone being a steroid is actually helping to deal with the arthritis that appears to be settling in - what a pity that it will only be for four days!

My one vocal chord is having a stressful time because I am trying to give it instructions to learn from the experience of Nana Mouskouri who apparently had only one vocal chord and still managed to make some fabulous music.

My chord tells me that it's not the same thing. In the first place I have both the chords left intact it's just that one cannot perform as the controls to the nerves have been cut, second that I am not a woman and thus cannot multitask and third and most important I lack her talent.

It's cruel when your body can actually argue with you and given the inability to vocalise you cannot argue back! (maybe it's the chemo talking)