ONCE UPON A TIME

BACKGROUND TO “IAN WOODHOUSE STORY”

Ian was aged 52 when he first heard of the possibility that he might have prostate cancer.  After experiencing significant distress following a biopsy, he refused any further tests.  He was diagnosed with an advanced and very aggressive prostate cancer two days before his 58th birthday.

After a great deal of discussion and advice he opted to have HDR Brachy Therapy in conjunction with external beam radiation and hormone treatment. Being one of the earlier patients for this type of treatment in Sydney, he found very little information on HDR Brachy and decided to keep a journal of his experiences for future reference.

Prostate Cancer has had an enormous impact on Ian’s life, changing it in ways he never expected.  In conjunction with Jacqueline Lim, clinical psychologist at the Cancer Care Centre, St George Hospital, he addressed the 2nd Prostate Cancer Institute Summit on the psychological aspects of men diagnosed with prostate cancer and is very outspoken on this issue. He is available to talk with Service Clubs and Men’s groups on his experiences with prostate cancer.

This story covers the first six months of his treatment – from the time he was diagnosed (May 2003) to the last day of his external beam radiation treatment. Post treatment he successfully completed his Civil Marriage Celebrants Certificate and Cert IV in Assessment and Workplace Training. He is also writing the next chapter of his story which will detail the ups and downs of his life after cancer treatments. He looks forward to new challenges in his life.

PREFACE:

Although I have called this “Once Upon A Time”, it is hardly a fairy story. The only resemblance is the hope that by the end of all the treatment the ending goes something like   “….. and they all lived happily ever after”.

As I mention later, I did as much research as I could on High Dose Rate Brachy treatment and found a lot of information wanting. There has been a great deal written on Prostate Cancer. There are many books telling you what you can take or do to “avoid” prostate cancer and there is a bunch of information about places that conduct the treatment showing how the procedure is done. I managed to find a few short stories on some HDR Brachy treatment but very little that was informative to the layman.

As a layman I had absolutely no idea of what HDR Brachy Therapy was all about. Indeed up until I was diagnosed with prostate cancer, I had never heard of it and I must confess I found myself wanting in regard to a lot of information on or about the disease.  As you will read, I did manage to get myself up to speed on the treatment but my initial thoughts on it were not overly positive. I conceived there to be a significant amount of pain and discomfort involved in the treatment and at one stage I wasn’t too sure whether the treatment may be worse than the problem; after all I am reading about upwards of twenty-two needles being placed via the perineum (the area between you rectum and scrotum) in and around the prostate and then massive doses of radiation being delivered via a machine, directly into the area. I had visions of glowing in the dark and being fried internally!!!!  I remember vividly being convinced I was going to have a lot of pain while the treatment was being delivered but this simply was not the case. Have no fear – at this time I will say that whilst there is discomfort, the treatment is nothing like you would imagine.

I also mention later that treatment can often depend on the person receiving it as to how they cope; therefore no two stories are probably the same. Similarly there is a variation in the treatment by the different doctors. I have attempted here to give an overview of what happened to me in the hope it will give some guidance to other poor souls who are wondering what is going to happen to them.

Finally, I have taken the story back a little to give some overview. Prior to being diagnosed I had been going through a lot of stress at work and to this day I am still convinced that this accelerated my cancer, although there is no actual evidence to support the theory.

IN THE BEGINNING:

This is a record of my thoughts and emotions as I go through my battle against prostate cancer. Cancer is a terrible word and from the first time it was mentioned it put fear into my mind. I hope as I go through the treatment(s) I will become more adjusted and acceptant. I hadn’t realized how common prostate cancer was until I read that 10,000 men are diagnosed with prostate cancer every year and 2,500 of them die each year. I know one regularly hears the comment, “oh well, if you have cancer, prostate is the best as it is the most curable”, but tell that to someone who has just been diagnosed or is going through the treatment and even today it is one of the biggest killers!!!

I am saddened and amazed at the lack of awareness of prostate cancer and the attitude of men to the way it is initially diagnosed. The “man thing” has no doubt been the death of many and I am sure that there has to be some way of getting over this mental block that most men have…

May 2003 started off like any other month. It was the month I turned 58. At work I had reviewed our figures for the previous 10 months of the year and was happy we were on target to produce a good result for the end of the financial year in June. The previous fiscal year had been a disaster and the ongoing battle to turn things around had taken a very big effort from all the staff and had caused a tremendous amount of pressure on sales, cash-flow and improved profits. It had been a very stressful time.

I was heading off to the Philippines and Taiwan at the time SARS was at its peak. I had made an appointment with Brett Thompson (my GP of many years) to discuss any safety measures (other than the obvious) that he may suggest whilst I was away. During the visit he reviewed my recent history and noticed it had been about 18 months since I had seen him. I had had a prostate biopsy back in 1997 that had come up clear but at that time I had a very bad experience with the Urologist that had literally frightened me from further prostate checks…..

Brett had sent me to see this specialist, as my PSA was a little higher than he felt it should be and I was booked in at one of the local private hospitals for a biopsy. On arrival I was asked to remove my clothing below the waist, and told to put on a gown. I was taken into this small room equipped with really nothing different to what you would expect in a GP’s surgery other than for the equipment he was going to use for the biopsy. I was told nothing and asked to lie on my right hand side on the examination table. He then proceeded to do the biopsy without any form of anesthetic or explanation. I cannot describe the pain as he took the core samples from my prostate and my dignity was completely taken from me when, with all the pressure on my bladder during the procedure I urinated on the bed a number of times and was completely conscious of my actions but was unable to stop myself.
After the test I walked out of the room to be told I would have to make another appointment to get my results and I was sent home. I was told there might be a little blood when I opened my bowels and I should take the anti-biotic for a few days in case of infection. When I got home I went to the toilet to urinate and the shock I got when I urinated what I thought was almost pure blood was an absolute trauma for me. I was not told to expect any of this and I was absolutely terrified. I phoned my doctor to ask him if I should go back to the hospital as I was really concerned and frightened and he advised it was normal to experience some loss of blood during this procedure and queried with me why I was not told what to expect. I could not understand why any doctor could let a patient go through what I experienced and I felt the specialist erred in his professional responsibility. I am by no means a pussycat and have a reasonable ability to withstand pain and discomfort but the impact on me took a long time to settle down and I vowed at that time I would not go through anything like this again, even to the point of ever having another biopsy,

Four years later Brett took another blood test and my PSA had increased from being in the 5’s to around the mid-7’s. Because of my previous experiences I simply refused further discussion on the subject!

Anyway, back to the story! Brett did a Digital Rectal Examination (DRE) and commented that the prostate felt a bit larger and harder than the last time. He then asked me to have a PSA, which was done the following day. My follow up appointment with him caused some pretty serious discussion as my PSA had risen to 10.0 and I was still “anti biopsy”. In light of my previous experiences he urged me to see a different Urologist who he assured me would be more understanding, and I agreed to meet with Dr. David Malouf.

David turned out to be totally sympathetic of my previous experience and having done his own DRE he was adamant that I have another prostate biopsy and advised it would be done under a full anesthetic at St George Private Hospital.

The procedure was booked for May 26th – 2 days before my birthday. Any resemblance between my first biopsy experience and this were purely coincidental. It all went fine with me managing to maintain my dignity and experience absolutely no discomfort. Interestingly, there was nothing like the loss of blood experienced with the first biopsy either. An appointment was made for me to discuss the results of the biopsy on June 4th.

June 2003 came around quickly enough and again I was pleased with the results of May business and quite confident of a successful trading year.

My wife had been having trouble with her gall bladder for the past couple of years and the wretched thing had flared up again. We had decided that she should have it removed and was waiting an appointment to meet with a surgeon to discuss a suitable date.

I saw David in his Miranda rooms at 8.15am on the Wednesday morning. I don’t think I will ever forget that day as it basically sent my world into a complete spin and my life suddenly changed. I genuinely feel for Doctors as they often have the unenviable task of passing on the most horrible of news and basically there is no easy way of doing it. Admittedly they are at “arms length” from the patient but I still couldn’t imagine it would be easy.

Whilst he didn’t pronounce “sentence” the look on his face told me what I didn’t want to know!!!  David told me that 6 of the 8 core samples had come back positive and that the cancer was a real “nasty”. It was rated a Gleason 9 tumor and could not be ignored. I handled the discussion as well as I could but pretty much everything he told me from then on was a complete blur. As I left he gave me a cassette to listen to and also a book on prostate cancer so I could get an overview of options. I do recall we discussed various options during the appointment but retention was minimal. An appointment was made for the following Friday (June 13th) at which time I was to bring my wife as David felt four ears were better than two for any further discussions. I left his rooms armed with requests for a urine sample (to check for blood in the urine), a CT scan and a Bone scan, all of course being necessary for our next meeting.

I remember walking back to my car, calling my wife and then completely falling to pieces. My life simply collapsed in front of me. Here I was, a relatively fit and healthy 58 year old that had just been told he has a very high-risk cancer in his prostate. My wife left her work and somehow I managed to drive home and wait for her there.

The thoughts running through me didn’t help my state of mind and in simple terms I was a mess. I had just been told I had a serious cancer… to most of us, the word cancer initially means death and that creates fear, which takes time to handle. My drive home that day, as I said was a complete blur and if I went through red lights or whatever, I would have had no retention of the act. I was simply driving by memory!!! Anyway, both my wife and I had a lot of crying to do and also a lot of talking. A couple of hours later we had settled down. I guess at this time you go through a number of emotions…..

Fear first and then the realization that cancer today can generally be cured, particularly if you get it in time. We didn’t know if we had, but there was hope.

Anger came next followed quickly by feeling sorry for myself; “Why me, and haven’t I had enough problems in my life?”

Over time these thoughts give way to a positive approach of, “Well I have it, how do I fight it?”

My father had been a Church of England Minister and I had been brought up under that faith. Whilst I was not as strong as him I have continued to maintain my beliefs and as much as I may have questioned them that day, I found them a significant help to me as time went on. This is obviously not the case for all people but somewhere you will draw on some strength from somewhere to get you through.

It seemed to me at this stage it was paramount I find out how bad the tumor was and if it could be killed off or slowed or whatever. I started making appointments for the Bone scan and CT scan and set about getting more up to speed on prostate cancer.

I did the Bone scan the following day and everything went fine. My first ever bone scan and I found the experience both fascinating and interesting. As I expected, there was absolutely no discomfort and the staff were wonderful. A couple of days later I had the CT scan and again the experiences were the same.

I felt it important that I try and maintain as close as possible to my normal lifestyle at this stage so the following week I flew to Melbourne for three days for appointments. It was hard as I had no idea as to what the results of my scans showed and I knew they were going to tell David whether the cancer had gone into organs or bones. I tried as hard as possible to put it out of my mind and on June 13th Bobbi and I duly arrived at David’s rooms armed with the scans. A quick look told him the cancer did not appear to have spread and that gave cause to considerable relief and the thought that now we can maybe talk about eliminating the cancer rather than just arresting its growth.

David then discussed what he considered to be the best two options to fix it.

We discussed the possibility of surgery and having a Radical Prostatectomy. He gave the “for and against” arguments for this procedure.

Next he went on to what I was advised is a relatively new form of treatment in Australia; High Dose Rate Brachy Therapy. (Seed implant Brachy again, was not a considered option as the cancer risk was too high.) He explained in general terms what HDR Brachy was and how it could be a very acceptable alternative procedure.

There is a lot written about taking your time to make a decision on which procedure you want to have and how important it is to have the right information. There is also a lot written about how it is your decision and the Doctor is there to advise you only and assist where possible, To the layman this is a very big responsibility to wear and generally you have no knowledge of how the respective procedures are done, what they entail and generally are they “life saving”, (as that is the ultimate aim), or putting you in a “holding pattern”.

I started off my thirst for knowledge with a summary of where I was:

• A Gleason score of 9
• A PSA of 10.0
• A prostate biopsy that showed 6 of 8 cores to be positive.

This told me that I was a high-risk patient and that precluded a number of options available to me. On the other hand;

• The CT Scan showed everything appeared to be clear
• As did the Bone Scan with a slight shading on the 6th rib that proved to be an old injury
• The urine test showed no blood was being passed.

I figured these to be positive factors in any consideration.

There was a danger of information overload here as you could evaluate Partin Tables and several other deep and meaningful methods of how far your cancer had developed. There were other rating methods but I believed I had evaluated the key issues indicated above. As I wasn’t technical or knowledgeable enough to delve further into the ramifications of all the information available, I followed the KISS (Keep It Simple Stupid) principal and this helped me enormously in my understanding.
David phoned me on the Wednesday evening and advised me he was making an appointment for me to meet with Dr. Joseph Bucci, a Staff Specialist Radiation Oncologist with the Cancer Care Centre at St George Hospital.

My wife and I met with Joe the following Friday evening. As with David, those first impressions were incredibly positive and we both felt very comfortable. Joe explained High Dose Rate (HDR) Brachy Therapy to us in general terms – what is was and how it could help me. He was completely up front with the treatment, the positive benefits and also the side effects and I knew when I left his rooms what I was up for if I chose HDR Brachy treatment in conjunction with the External Beam Radiation and Hormone treatment.

Over the next couple of days I spoke with several people who had prostate cancer but found their thoughts were too personalized and really didn’t help me in any decision I was going to make. They did give me an understanding of their feelings, experiences and progress but with HDR Brachy being so new, I was unable to get any feedback.

The first of many questionnaires Joe will give me was completed and returned to him for his survey.

I then spent the best part of a day doing any sort of research I could on the Internet. At this stage there were more questions than answers in my mind and I needed to know several pieces of important information. Firstly I wanted to find out about this guy Dr Brachy but soon found out there is no such person!!!! Brachy is from a Greek word meaning “close in”. One question answered!!!!

Whilst I found the Internet to be helpful, there were still questions that had to be answered. Joe had given me an overview of the HDR Brachy but I needed to know more. Whilst the initial procedure is done under general anesthetic you are fully aware of everything after the needles have been put in place. I had preconceived ideas of  20 odd needles being inserted through the rectum (ouch!) and not much else. (This assumption I found out to be completely wrong!!) As I was desperately interested in the procedure I went off to find out as much as I could about it. Whilst I recognized treatments are done differently, I did find some general information on the implant procedure and the planning process after the needles are placed.

The discussions with people who had prostate cancer, the valued discussions with the specialists, the support of my GP (who I also discussed this with), the more than frequent discussions with friends, the sharing of the future and what was going to happen, I discussed with my wife and then our two children were all part of the decision making process. The supplementary information I got on both RP and Brachy from the net put me in a good position to make a choice.

I had summarized my position earlier and I knew I was a high-risk candidate. David had told me that statistically I had a 65% chance of getting rid of the cancer with either procedure…. The same odds didn’t help in evaluating the way I should proceed!!!

With the surgery there was still a risk of positive margins and I was up for a further six weeks of external beam radiation, and even with that my chances were 50-50 of getting rid of the cancer.

HDR Brachy Therapy with external beam radiation and hormone treatment seemed to be the solution. A better chance of destroying any “runaway” cancer that may have got into the seminal vesicle glands or lymph nodes plus blasting it out of the prostate itself.

Now having an understanding of the procedure it seemed:

• a lot less invasive,
• less time away from work and the opportunity to maintain a normal life style,
• cleaner,
• I felt a better chance of success
• A “newer” technique that I was prepared to try
• Down sides that were probably a little better on average that RP

I had no illusions about the down side of cancer. Considering that treatment is for a life killing disease, any procedure is going to have some pretty serious side effects. My discussions with both David and Joe gave me a good idea of what to expect, but I really believe no two people are the same and each person will experience different side effects dependent on their health, strength and attitude. I fully intended to maintain a positive attitude, healthy outlook and continue to exercise.

Again, to get additional information I went to the web. There was general coverage on:

Hot flushes                                                     Loss of libido
Depression                                                    Lethargy
Breast swelling                                              Abnormal liver function
Impotence                                                      Osteoporosis

Most of these symptoms were related to hormone treatment, and generally had some form of prescribed treatment to help with any reaction.

There was additional information on:

Incontinence
Other organ damage

Very little was mentioned about these but when information was found it favoured low percentages of risk and there was supportive documentation.

From a “younger” man’s perspective I guess the big nasty is impotence!! Most of the information I could find offered reasonably positive percentages for maintaining some sort of sex life (albeit with the assistance of various aids from pumps, pills or injections!!)

The points above are covered in varying levels of detail but nowhere did I read in detail of what happens to a man when hormone therapy is prescribed as part of the treatment. It seemed you would find out these things as you progress through your treatment.

I kept coming back to the basics …. I am fighting a high-risk cancer.  Quality of life is important and if the downsides are that bad, is quantity of life more important than quality????? At this stage I fear more from incontinence than I do from impotence with the hope that advances in modern medicine will leave a bright light at the end of the tunnel for impotent men.

On the other side of the argument, I again come back to the primary objective ….  “Kill the cancer”. The trade offs, if they do not cause pain or discomfort above acceptable levels seem to be a necessary evil and I will have to live with it.

Today (June 24th) I spoke with Joe and advised him I was ready to proceed with HDR Brachy. This is my last week before I go on to hormone treatment and I now wonder at what my future life is going to be like. I am relieved that I have made the decision and I now must move forward with it. I pray that my friends and family have the strength to go through all this with me and I know I must be strong and positive.

I am meeting with David on Friday morning (no doubt he already knows my decision through earlier conversations with Joe) and will get all the relevant prescriptions. I have made my appointment with Joe for September 10th with an updated PSA and further discussion on the treatment. I have made an appointment with the Endocrinologist to have my bone density monitored from here on in and at this stage all systems are go.

June 26th and my wife goes to President Private for her Endescopy and Colonoscopy. She is a little nervous about the results but everything came out clear and she can get the gall bladder removed next week. I feel for her at present as she is staging her own battles and she has my problems to contend with also. It’s perhaps another reason for a greater show of strength.

Last night I told one of my friends that I have prostate cancer – I had held off telling most people until I had made a decision on which treatment I was going to have. It was the first time for a few days that the emotion of the event got to me and I was staggered at the reaction from my friend.

Sometimes it takes news such as this to find out just who is a friend and sometimes you take friendship for granted. I might also add it is these friends that later on will help you get through and you will be extremely grateful for the support you will get.

The meeting with David went extremely well and he is totally supportive of the HDR Brachy decision. I left him armed with my prescriptions for the hormone therapy and I go on that next week. David also put to rest some of the disinformation out on hormone treatment. Yes, there is a loss in libido and yes, there is something that can be done about it. He also confirmed there is some reduction in the genitals but nowhere near what I had imagined. The testicles do shrink and there is a small reduction in the size of the penis, but if everything comes together later on, there will be equipment I can use!!!!

The month started badly and it is amazing how one can come to grips with everything that has happened. I now want to get on the treatment and try as much as possible to get back to a normal (?) life……

Bobbi didn’t make it to the hospital as she managed to get quite a bad cold and the surgeon felt it better to postpone it. She has now booked in for early August. Frustrating for her, but hopefully she will be rid of the cold and all will be well.

I spoke with David about a number of issues that were worrying me and he just looked at me and told me it was time I stopped reading about prostate cancer and Brachy Therapy. He went on to say that I had made my decision, all the doctors believe it is a right decision and now just get on with it. Stop reading about it and start reading books again!!! I am starting to take his advice.

The following week I met with Prof. Terry Diamond, my Endocrinologist for the next few years. Dr Diamond explained the possibility of Osteoporosis as a result of the hormone treatment and needed a starting point to monitor me. I left him with a raft of referrals for more CT scans, bone density scans, blood tests, etc which I will be having over the next month. The CT scan has shown no evidence of Osteoporosis but there are still a lot more tests to come back.

It is two months today since I was told I had prostate cancer. How quickly the time has gone. My tablets are finished and I have not seen a doctor for quite some time and as a result, I am happy to say life goes on quite normally. I am not aware of any side effects as yet but I do fear waking up in the night as I switch on and I am now starting to find sleep quite evasive. I hope this will pass but nights are about the only time I really think too much about what is happening to me. Most of my friends ask how I am from time to time but again, they are acceptant of the situation and with me, want to normalize things as much as possible.

I have managed a couple of weekends away during July, one of them being down to the snow and with perfect weather and conditions I thoroughly enjoyed myself. This is an annual event with three other men and we skied Perisher Blue and Thredbo. Our nighttime “partying” finishes about 9.00pm and we are all in bed asleep by 10.30pm. Not the wild weekends I can remember when I was in my ‘20’s but we have a good time and for me the opportunity to be outside and get exercise was of great value and another indication to me that the cancer was not going to interfere with my life.

We have just returned from another weekend away staying at my good friend Steve’s place in the Southern Highlands and again it was a wonderful and much needed break. Steve and Anita have been wonderful and unbelievably supportive. I am grateful for that, as you do need a special someone outside of the family who you can talk to and who understands. It wasn’t that long ago Steve lost his mother to breast cancer. At 62 she was very young and he has been a pillar of strength for me.

My dear wife is now without a gall bladder and happily the operation went very well. She is a little tentative and although it is keyhole surgery nowadays, she still had an organ removed and it will take time to get on top of it. She is doing well and determined to get her strength back as soon as she can.

I do have one big problem and that is a love of food. Whilst everyone does what they can to keep me on the “straight and narrow” my passion for hot chips is not doing me any favours; I am fluctuating by about 2 to 3 kilos within the week. I know I am going to have to be more positive about my diet and try and maintain my earlier attitude towards health and exercise. I am told that this passion for food is what they call, the “hormonal effect” but if it keeps up I am literally going to waddle into the hospital for my treatment!!!!

Life and business continue and I have just returned from a quick trip to China and Hong Kong. The weather was shocking (survived a typhoon) but the meetings were reasonably successful and it was good to have a change of environment for a little while.

 At this stage I have been on the hormone treatment for two months and it is definitely doing its job. I am still more than able to get an erection but it is a totally “dry” orgasm. Certainly, all the feelings and pleasures are there and so far it is nice to know that libido and capability are still part of my life.

My PSA has dropped to 0.7, which Dr Bucci tells me is really good as the cancer is responsive to treatment. During my meeting with Dr Bucci I mentioned the flushes and he doesn’t want to do anything about treating them yet as I am still going to be a long time on the treatment. We discussed the HDR which is still scheduled for November and he told me there will be some paperwork sent out in the near future telling me what I will have to do prior to and just before I go to hospital.

We had some friends around for dinner last weekend and the discussion came around to prostate cancer. The father of some dear friends has just been positively diagnosed and is going through the early tests I had. I was able to discuss a few things with him and I think he was grateful to be able to discuss it with someone who has just been through it. He is 81 and will be meeting with his urologist at the end of September to discuss treatment. I will be interested to see what decisions will be made. Anyway, the lack of day-to-day information on prostate cancer was mentioned. Sure, there are books and pamphlets on what it is and a general understanding of prostate cancer, but having been told you have it and here are the options available (few seem to mention HDR Brachy), the information flow then seems to stop.

Today I wonder what it will be like when I go in for the HDR Brachy and I wonder more about the 5 weeks radiation afterwards. November and December are going to be two big months in my life and I really have very little information.

I have since found out that there are a number of pamphlets available from the Cancer Care Centre that gives you some brief understanding of the External Beam Radiation. You only need to ask if they are not on display. Again I have to make the point that the information does come through eventually and a little patience will help a lot. I am starting to learn this real fast and tend to run more easily with everything.

Wow!! I was listening to the news coming to work this morning and I am being told about a pill that will be available in a couple of years that will kill prostate cancer!!! It made me recall conversations a couple of months ago with friends who several years ago had two choices – hormone treatment or Radical Prostatectomy. Then along comes Seed Brachy therapy and now we have HDR Brachy therapy. How quickly modern medicine finds solutions and it made me think that by the time my treatment is over, there will be a whole new series of “cures” available.

It will be six weeks from today that I am scheduled to go in for the HDR. That also means I have been having treatment now for two months.
The time has gone so quickly but I am wishing more and more for the next six weeks to go fast. I played golf at the weekend and one of the members at our club advised everybody he was not going to be around for a couple of months as he had just been diagnosed with prostate cancer. It seems he has opted for the RP and will be going into hospital at the end of November. I was surprised at the speed of his decision, and in conversation his lack of information on alternative treatments available. It will be interesting to compare notes with him when all this is over and I certainly wish him well and hope he has a speedy and successful recovery. I am glad I was given time and the opportunity to discuss issues in more detail as I feel the decision I made was right based on a lot of information I had and not on emotion or other issues.

Speaking of emotion - it certainly was an interesting weekend as I think I am experiencing new feelings and thoughts and I wonder if they are normal or perhaps I should be seeing a councilor. For the first time I started feeling lonely. Not in the sense of being apart from my wife, or family or friends… heck, I saw heaps of all of them the past couple of days. It was more loneliness based on my cancer. I remember when I was first diagnosed there were regular contacts offering support and the communication gave me strength and a will to fight. These three months later I am looking healthy and feel strong and time has momentarily dulled the memories of most. Sure they know I am on treatment and the regular “how goes it” still happens and I know the care and concern is there, but………..

Maybe I am way off track or maybe I am not as strong mentally as I thought I was. I wonder if the time is coming to talk to a support group! It is hard to put in writing but basically the cancer is a personal thing. It is me who is living with it and it is ultimately my fight (accepting there is loads of help from a lot of quarters) but it is still personal. Do people understand what it is like to have a disease that can kill, hanging over your head?

You wonder if they understand the feelings building up to the HDR and ongoing radiation. Or is it that although the odds are very low, positive percentages mean someone has suffered from a life of incontinence, bowel problems or surgery going wrong. Am I going to spend the rest of my life impotent? Is the treatment going to be effective? I am asking myself all these questions and I am sure that it is not un-natural to do so, but as best I can put it in writing, this is why I feel the loneliness.

I read a week or so ago in some journal a brief story of one guy and his fight against prostate cancer. He is on hormone treatment and mentioned the hot flushes. He commented that he was taking slow release vitamin B6. I have purchased some and have been taking them of a morning for the last week.

We are experiencing an early summer and that makes me hot, but it does seem at nighttime I am not feeling as bad as I did. Could be a placebo effect but I am going to continue on the tablets until I get to speak with David or Joe.

I think it was all in my imagination, or certainly so to date. The nights have gone cooler again and I am having a dreadful time sleeping. Two hours without waking up is like winning lotto!!!! Hot flushes and generally feeling hot is the norm. When I wake the mind games come to play; while I try hard to block thoughts of treatment out and the fact that work is real pressure at present, it certainly isn’t making life easier.

I received the confirmation from St George Hospital this week. That has been good and I now know when I am going for my pre-admission session and the HDR has been confirmed for November 3. I did get a real shock when I saw the list of prescriptions I need filled for prior to and during treatment.

Now I have a date it is a little inhibiting. The one good thing is that it will soon be over but it does get you to thinking a little more. I wonder if now is the time to be talking to a support group, or certainly someone who has been through it, as I am sure they could settle one down a little. I am confident it is going to go OK but as with most things “unknown”, the doubts start creeping in.

I wonder about the support groups as I know they are there and ready to help you, but calling them must be something like AA’s or gambling – you have to admit you have a problem or convince yourself you can’t handle the day to day dramas anymore and that isn’t always easy. I know I am fighting it, and I don’t particularly know why.

I just had my pre-admission session. I met with the Anesthesiologist and discussed his procedure and then I had a discussion with the nurse regarding my arrival at St George Hospital. She took blood pressure, weight and so on and then gave me an electro cardiogram as my blood pressure was quite high, after which I was sent over to the Cancer Care Centre to meet with one of the nurses and Dr. Joe. I was given a briefing of what to expect initially and made sure I understood about the fasting the night prior to being admitted and then I had time with Joe to sign all the necessary papers prior to the treatment being started.

I mentioned to Joe about whether I should talk to somebody and he offered to put me in contact with someone who had HDR but again I backed off. I also discussed the vitamin B6 thing and he pretty much confirmed my feeling that it is not doing me any good so that is one less pill I am now taking!!!

It is interesting to see what can happen in the face of adversity. I feel I am closer to my wife than I have ever been. Not only is she my very best friend but she is also there for me through all the emotions and pretty much takes most of it in her stride. She is not over reacting to all this and as much as she can she is making life at home as normal as she can. This past weekend we celebrated our 35th wedding anniversary and I couldn’t imagine my life without her being there. We share so many things and have so many similar interests and at the same time we both have our breaks away from each other with tennis, golf or skiing; losing her would be like losing life itself and I am eternally grateful for the decision I made to marry her all those years ago.

Whilst sex is not the priority it was, it is interesting to know I am still sexually capable and whilst I expect things may change in the future, it is very comforting to know. Probably this is an appropriate time to make a reference to libido. Everything I have read suggests a significant loss in libido and although everything still works, I have to say the interest is not as great as it was. I guess that means a decline but again, I am comfortable with what is happening so it doesn’t give me any great room for concern.

It’s now only a week to go and from now I am not allowed to have aspirin so I can feel in myself a tinge of nerves as the day comes closer. Steve phoned me to confirm when I was being admitted to hospital and I know he plans on visiting me the first night.
I am preparing myself for the pay back for all the hard times I have given him about losing his hair while all I will be able to do is lay there and cop it. With the needles and catheter in place there will be little else I can do!!!!

Its now been just over four months since I started on the hormone treatment and it thought it would be interesting to review how I am going as compared to the side effects I mentioned earlier.

• Hot flushes – heaps of them and sometimes very strong. I am coping with them but the worst time is at night. I now have a very strong sympathy for women going through menopause, as sometimes it is not easy to cope.
• Lethargy – have not noticed anything. Perhaps the lack of sleep may get to me late in the day but I am still doing everything I used to do and handling it without any difficulty.
• Breast swelling – have noticed nothing. No tenderness or increase in size (other than from an increase in weight!!)
• Loss of libido – as I mentioned, I am not as “keen” as I used to be but I still enjoy sex.
• Depression – No. Concern, loneliness (as I mentioned earlier) and anxiety perhaps, but I have never felt depressed about getting the tumour or the ongoing treatment.
• Abnormal liver function – nothing at all that I am aware of.
• Osteoporosis – have done all the tests and been cleared for the next twelve months

When I review all this I am pretty happy with the way it is going and certainly a lot of the fear and anxiety about the treatment that I felt earlier is apparent at present. It will be interesting to review all this again after Christmas and when I have completed the HDR and radiation.

When I got back from work on the Friday there were a number of cards in the mailbox and that night and for the weekend the phone was running hot. Earlier I mentioned about friends and family and their support. It is now coming through and the warmth you feel inside is quite an experience. I also mentioned faith earlier and many of our friends follow their respective faiths very closely. Bobbi and I have continued to draw on our beliefs and have found it to be a big comfort but one of the cards we received brought both of us to tears as we read of their concern for me and that they would be all praying hard for a fast recovery. I have had prayers offered in a number of places and although I am going into hospital on Monday and I am consoled in the knowledge that there are a lot of people pushing for me to have a successful outcome. Again I mention that faith is a personal thing and if you do not have it, you will get your strength from somewhere else.
The power of friendship is one of the best and the love and support from your family will also carry you through. All of this is very personal and you work with it as best you can.

Saturday has come around all to quickly and I start on my very low fibre diet. Whilst it is a little confusing as I mentioned earlier, Bobbi and I have worked it out and she has set me a menu for the next two days.

Saturday:

For breakfast, plain scrambled eggs on toast and tea.
Morning tea: a slice of butter cake (no icing) and a cup of tea.

I had a couple of glasses of water during the morning.

For lunch two fresh plain bread rolls, one with vegemite, the other with cheese. Washed it down with a glass of diet limejuice cordial.

For afternoon tea, another slice of butter cake and a glass of water.

For dinner I had tinned spaghetti on toast and then some custard and jelly. Enjoyed a glass of wine and finished the day with water when I went to bed.

Sunday:

I had a game of golf so before I left I had two dry fried eggs on toast and a cup of tea for breakfast.

Drank some water during the round and then repeated yesterdays lunch.

Had a glass of wine while we prepared some smooth dory fillets in a drizzle of olive oil and cooked some baked potatoe pieces in the oven (again sprayed with a little olive oil) for dinner.  Finished it off with jelly and custard.

I was on a total fast from 10.00pm that night so I had a glass of water and then had my scheduled enema – an interesting experience but I managed it OK.

The meals turned out to be more than acceptable and I certainly didn’t feel hungry.

I heard from my 81-year-old friend about his decision regarding his prostate diagnosis. He is going on hormone therapy for the time being and I guess they will just keep an eye on him. He is happy about that and is quite comfortable with his decision. Of course we will be sharing our experiences as time continues and there will always be a ready-made conversation when we meet!!

THE REAL THING:

Monday I was up at 5.30am and had my second enema, a shower and then headed off to the hospital. The nerves were there big time but I was so relieved to be on the way to getting the practical part of this exercise underway. As I have mentioned several times, I have read as much as I could on HDR Brachy Therapy but no matter what I had read, I couldn’t prepare myself for what was ahead of me. Basically I had no idea and so I opted to just “go with the flow”.

Bobbi drove me and we checked into the Oncology ward at St George Public Hospital. I believe St George is the only one in NSW that offers public Brachy Therapy; the others only admit private patients. I will come back to this later. I was booked in and had the necessary checks done, taken to Room 8 and it wasn’t long before I was on the trolley and being delivered to the Operating Theatre to have the needles placed.

At this stage I should probably bring up the feeling of embarrassment and the blatant attack on your modesty as you go through the treatment; your lower regions are from this time on exposed to all and sundry. The nursing staff laughed about all this when I mentioned it and advised this was a woman’s lot with babies and so forth and that I would get used to it. I did and very quickly!! During surgery there are rectal probes inserted, a cystoscope though the penis and ultimately a catheter. As the time progresses this is checked regularly and by the end of the two days you couldn’t care less what they see or when…. The embarrassment goes completely!!! I guess it is the trade off for having a cancer in a personal area of the body, but don’t for heavens sake let it interfere with your decision.
Having had temperature and blood pressure checked and another discussion with the Anesthetists and a brief chat with David Malouf regarding my flushes, I was wheeled into the operating theatre and very quickly I was out to it.

A little bit of banter with the nurses while they settled me on the table relieved me of some of the nerves and that was the last I remember. I believe I was out to it for around two hours while the procedure was done and I remember waking up in the recovery ward with a sore throat (which was to be expected) and very little discomfort. I was aware of the template holding the 22 needles that had been inserted into my perineum but notwithstanding the fact that I was still “out with the pixies”, I wasn’t conscious of any pain.

When I was cleared from recovery I was taken for X-rays of the pelvic region to check that the needles were OK and then it was off for a CT scan. All this information is used by the Physicist to plan the procedure for the HDR.

I was taken back to my room about 3.00pm and I must say I was quite comfortable and not feeling at all distressed.

Dr Bucci and his Radiation Oncology team arrived around 6.00pm to connect me up to the after loader, the machine that delivers the internal radiation treatment. Every connection from the machine to the needles requires a check that each lead is placed where the program requires it to deliver the correct amount of radiation to where it needs to go. This was rechecked and then everyone left the room and the treatment commenced. Room 8 is very isolated and a controlled area and during HDR procedure no one is allowed in the room.

For the next two hours while the procedure was delivered I lay back and watched TV and at no time did I feel the slightest discomfort. Basically the only awareness of the procedure was the clicking and whirring of the after loader.

At the conclusion of the treatment they ran a Geiger counter over me (and the room) to check there were no radiation leaks and I was disconnected. This was done after each of the three treatments.

When I got the all clear I had a sandwich and some water and just relaxed until I was given a sleeping pill about 11.00pm. I managed a pretty good sleep (under the circumstances) and again I was not in any pain or discomfort. Painkillers were offered but I genuinely felt I didn’t need them.

The next morning the team arranged for the mobile X-ray to check the placement of the needles prior to my next treatment, which was about 11.00am. Had a little disaster as I was trying to get myself into position. My foot pulled a couple of the leads to the after loader that had been connected and it moved the template. It was a whole new case of me putting my foot in it and the howls from the bottom of the bed told me I had done something wrong. Joe managed to get everything back in place but for a few moments I was seeing stars and I quickly resolved that from then on I wasn’t moving a thing!!! A quick dose of morphine quickly cleared that up and the next two hours went by with my second treatment.

I was still very surprised at the lack of discomfort or pain, as I had preconceived ideas of feeling the treatment on my prostate, but nothing at all. As I said before, nothing I had read could have prepared me for the real thing. It was an experience and although I am happy that part of the treatment is over it was of little consequence in relation to the pain and recovery I would probably have experienced with RP.

After the treatment I was given another shot of morphine so the needles could be taken out and the inevitable bleeding treated. I was swabbed with loads of Betadine and after the needles were removed I was given a lot of pads between the legs to arrest the bleeding. At the same time there was massive amounts of some sort of liquid put through my bladder for the next eight or so hours to clear up any clotting that may arise there. I was put to sleep with the solution running through my body and the saline solution still intact. It was a broken nights sleep as the nurse had to come in regularly to clear the collection bag and renew the solution bottles. I must say it was nice to lie down on my side and get off my back!!! The other highlight of the evening was the hot shower I was allowed to have. A shave and shower did wonders and I went to bed that night feeling quite comfortable and relaxed.

At 6.00am the nurse came in to remove the catheters and then the inevitable requirement to wee was advised before I was allowed to come home. Joe came in around 8.00am and checked everything and gave me final instructions for the next couple of weeks.
Basically maintain the schedule of tablets he had prescribed, keep taking plenty of water to flush my system and if any problems, contact the hospital immediately. He was very happy with the way the treatment went and I was really feeling good.

I understand that the three sessions of HDR I have received so far is about half the treatment I will get. Basically it is equivalent to the next 5 weeks of radiotherapy I will be receiving.

My planning visit for the radiation was made for November 14th and not long after that I will be having daily radiation until around New Years Eve.

To summarize the past two or so days, I have to make reference to all the staff I came in contact with at St George Public Hospital.

From the moment I walked into the Oncology ward I was made to feel comfortable and generally there was a feeling of compassion and understanding that permeated the entire ward. During my stay I was treated (on the various shifts) by six nurses who were without doubt, the most wonderful people you could meet. They were patient, caring, understanding and kind. No matter what, you are in the hospital to be treated for cancer; in its own right that is a scary proposition and in my case I was entering a complete unknown. These ladies made it so much easier.

Again down in the Operating Theatre all the nursing staff were very friendly, supportive and went out of their way to put you at ease.

Finally, Joe and his Oncology team were sensational. Again, they were patient, understanding, supportive and happy to explain what was going on. They shared what they were doing with me and that helped me to be at ease.

HDR Brachy is very new and everyone is learning as each treatment goes by. I hope in some way I will be able to assist in offering my observations and perhaps they may be taken up for the comfort of other patients who will be undergoing the procedure. I have resolved to do what I can to help (without getting in the way) and after my treatment is completed I will offer my services to be used whichever way they can.

During the time I was trying to urinate I did experience the passing of some blood clots and was advised this was normal, as was the blood that came out with the urine. This was about the only time I experienced pain (to be expected) as I tried to get the system working. I was reminded to keep an eye on things and take in lots of fluid. Having completed the compulsory wee, Bobbi came to pick me up and I left the hospital around 11.00am.

As it was a beautiful day, we drove to Cronulla and I had an easy half hour walk along the Esplanade to enjoy the ocean and the fresh air. I believe I passed the last of the blood clots during the walk, as I have not experienced any clots in the urine since then.

Walking was not uncomfortable although I was walking quite slowly. We stopped and had a light lunch on the beach and then came home around 2.00pm. I have continued to take in liquid and already my urine is coming clear and that is a good sign that all is well in the bladder and the bleeding has stopped.

I am pleased the long wait is over and the first part of my treatment is completed. It has been an experience like nothing else in my life and in review there was no reason why I should have been frightened or concerned. Everything went well and I have to repeat I suffered very little discomfort or pain and as I write this on the Wednesday afternoon I am happy and positive that I have now gone a long way to getting rid of this wretched disease.

It is now two days since the procedure and last night I did a number of pees and managed a little sleep. I have noted that the past three days I have not had any flushes. I have a little more understanding as to why I am walking a little funny. The bruising around the scrotum and penis is quite noticeable but I believe that will clear pretty quickly and having seen what was there and how it occurred, I am not at all concerned about it. This morning I managed to go to the toilet and that was another blessed relief. 

As I mentioned earlier in this (not so little) dissertation I was more concerned about incontinence than anything else. As with any surgery there has to be a margin of error and the fact that I have opened my bowels and been urinating so regularly I am most relieved that all the body parts are working correctly and my fears so far have been put to rest.

I ached over the decision as to what the best treatment would be for me and as I write this I can only say that I am so happy I took the HDR option. Although I do recall I had limited choices (HDR or RP) I will never regret the actions I took. This morning, (albeit the swelling between my legs) I am feeling extremely well and happy. I feel I need to hold myself back just a little as I have had a lot happen and I know I should just rest for a couple of days.

I received a follow up phone call from the Cancer Care Centre this morning to check that everything was OK and I was resting comfortably. I let them know how good I felt and that I believed everything was working correctly and again was advised that if I had any problems I must call them. It is yet another example of the care and consideration for their patients, that they take the time to follow up. It is most comforting to know that you are not just another person they have pushed through the system.

I had another reasonable nights sleep and only had to go to the bathroom three times during the night. Everything is working nicely and I continue to be relieved that there is no sign of internal damage as a result of the treatment. Most noticeable is the lack of hot flushes and I am hoping that is because of all the other tablets I am currently taking. As instructed I visited with my GP this morning and he checked that everything was OK. The bruising and swelling is going to be around for a little while and the good news was only a slight amount of blood in the urine. He told me to keep drinking plenty of water and keep flushing the bladder. I also mentioned to him that I was so happy there was no organ damage from the HDR and he did point out that there is still five weeks of external beam to go. A veiled warning I suspect!!!

This afternoon I was visited by the Cancer Outreach Centre (part of St George Hospital) and had another check up. I mentioned to the nurse that I was going through a strange stage and every time I spoke about what has happened made me quite emotional. She said that this was not unusual and to really remember that my head and attitude was further advanced than my physical system. I was not to forget that a lot has happened to me and my body has been through a great deal over the past few days. Again the offer was made for my wife and me to talk to a councilor if it was felt necessary, but generally I feel in charge of myself and I am sure everything is going well.

We discussed the attitude of people to cancer and she did say that for many it is an uncomfortable subject and is not easy to relate to. There is no such thing as a good cancer and she did agree that there is some loneliness that is simply part of the disease. I mentioned much earlier about these feelings and they come and go. It is hard for people to understand fully how you feel.

I was advised I would be monitored for the next week prior to going in for planning and we spoke at length about the radiation treatment. She told me a lot of things I didn’t understand and again advised that there could be some side effects later in the procedure.

Come Friday evening and I hit the wall!!! I suddenly got very tired and started to struggle a little. This has been the case since. I am sure my physical state is starting to catch up to my mental state (or vice versa) and I think I may have been overdoing it. My urine flow reduced to a trickle and I started adding Ural to my water.
Ural is a urinary alkalinizer and it was recommended to take any acidity out of my urine. It helped but Friday night saw me go to the toilet eight or nine times during the night and very little sleep. I have slowed down a lot since then and started taking some rest of an afternoon and although the “flow” has come back, I am still doing a lot of little pees each day. I think sometime on Sunday morning I may have passed a little more debris through my urine but it all happened too quickly and I can’t be sure. Nights are still very active with regular visits to the toilet. On the other side, the bowels are doing fine!!!

I went to work this morning and caught up on some of what didn’t happen last week. It was good to get some involvement but by 2.30pm I was really starting to get tired again and so I came home. I plan on maintaining some form of work schedule this week but at the same time try and build myself up again for the bouts of radiation. In the meantime a little nap has made me feel a lot better.

I have continued with a daily schedule at work and have been enjoying it. It is very encouraging that everybody supports you when you go through this sort of thing but they all manage to make me feel I am contributing and that is very good for the soul. I certainly feel my strength is coming back to me; I haven’t worried too much about diet but I am now losing a little weight (no doubt from getting rid of a lot of the fluid that was in me from when they flushed out my bladder after removing the needles) rather than any specific diet. I am hungry all the time and am eating very well. I notice a side effect of one of the tablets I am taking is increased appetite!!! Tiredness seems to be the big “monster”. I am still going to the toilet on average, once an hour and that is not letting me get much sleep. I am finding I am still a little emotional from time to time as I recall what has happened but I certainly feel a lot more in control than I did last weekend. There is no doubt I overstepped the mark when I came out of hospital and it is a good lesson, well learnt about how to treat the external beam radiation when it starts next week.

I notice that the flushes are back…. as strong as they used to be, and as regular, so I assume everything is still working with the hormone implant. Another nice thing is that the bruising is starting to go away and my nether regions are starting to look “presentable” again.

This being the day before I go in for the planning for the external beam radiation I can’t help but review where I personally feel I have been the past two weeks.

• Firstly, I now realize in a more significant way the true value of friends and family. The past weeks, and now, has been inspirational for both my wife and me and we have been able to carry the strength of all this into the “battle”. Whilst sometimes it has been hard to talk about the treatment, it has been so nice to have the care and understanding – never assume this is not going to help you!!!

• Last Monday I presented myself at the hospital for the HDR treatment. I felt positive when I got there and that attitude has not changed since. I was and remain confident the treatment is going to work and I continue to chase that attitude in my day-to-day life.

• I can’t help but remember I was nervous and a little inhibited at what was happening but I soon got over it. A combination of wonderful medical, nursing and support staff helped see to that.

• My understanding is that everyone was happy with the HDR and it will be a solid base for the next “course”.  In retrospect there was nothing scary or hurtful about the treatment and I certainly did not come out with a lot of pain or too much discomfort.

• I tend to feel I over did it when I was released and I do believe there should be some comment made on that to patients. I certainly felt good, but I certainly wasn’t as up to the mark as I had assumed. Maybe I was still on some high from the residue of morphine, anesthetic, and anything else that may have been in me. Anyway, it came to a screeching halt on the Friday and I was very aware that my body had undergone some major trauma. It took a few days to get my confidence back but by Tuesday I was feeling pretty good again.

• As I mentioned, some light work and some rest helped for the rest of the week and although I have no intention of just throwing on weight, I have eaten what I have felt like and concentrated more on getting my strength back. Do I worry about weight reduction after the external beam radiation?

• Perhaps in review the biggest “bust” of the lot has been the lack of sleep. Not from pain or discomfort, but from too many trips to the toilet. I know my bladder has taken a beating this past week and is taking time to get back to normal so I can understand why, but it has been difficult.

• The other side to the too many trips to the toilet is extremely positive for me. As I mentioned earlier, I really feared incontinence above anything else and to date that doesn’t seem to be a problem. I am extremely grateful for that.

• I am so happy that there seem to be no other internal problems at this stage, as this was another reason why I chose HDR Brachy over other treatment.

All in all it has been a very eventful two weeks. I am truly happy with everything and I am now looking forward to getting the next stage underway so I can look forward to the New Year without treatment and move into a hopefully more positive 2004.
THE NEXT STAGE – EXTERNAL BEAM RADIATION:

It has been two weeks today since I commenced the HDR. A lot has happened in that time and as I write this I am feeling comfortable within myself, and the progress of my treatment. The endless going to the toilet continues but I sense with each day it is getting easier and my sleep patterns are improving a little. The big battle is with the general tiredness (from the lack of sleep) and that seems to have an impact on concentration. I am awake very early in the morning and so I am going to work early and coming back mid afternoon. It gives me time for a little rest when I get home and with everything else that is happening I feel it is allowing me to cope very well.

With each passing day my list of tablets gets less and by the middle of this week there will only a couple of pills I have to take morning and evening. It looks like they will all be finished by Christmas.

Anyway, there are some pretty common side effects with the radiation and the staff go out of their way to advise you that the treatment is being monitored and you are in constant communication. Most issues can be treated (one way or another) and they are there to help you get through all this. Also, the Radiation Oncologist is checking you weekly so the full support team is in “position”.

During the planning session I also spoke with Joe about the next stage of the treatment. He came at me a little from left field and advised his preference for expanding the treatment area of the external beam. I understand he is now giving me a wide-angle treatment, which I believe covers the whole pelvic area. This brings a few organs into play that I thought would be a little outside the field and there is now a possible increase in some collateral damage to other organs. Joe advises the percentages are small but I have to be aware of them. He also feels that by doing this he is giving me a better chance to clear up any stray cancer cells that might be outside the currently planned area to be treated. I of course gave him the OK to proceed as he has my total confidence and I know he is doing this to give me a better chance of being declared “clean” in the future.

I did pick up on the advice that I could have some nausea and diarrhoea and my planned week away after Christmas has been cancelled. I was going to be staying in a caravan down the South Coast, but the prospect of regular needs to go to the toilet, and that being fifty metres away didn’t compute!!!! Also, I am not sure if the constant peeing will be finished or will continue and again I am not keen on a long walk to the loo several times each night…….. I am a little disappointed about this as I was really looking forward to having a few days with very dear friends and a big opportunity to start building up my strength again. Then again, I have said a number of times, not all people are the same, and maybe I will not have side effects (or to a lesser extent) and if that is the case, I will be off down the coast for a couple of days break.

This morning I was waiting in the Cancer Care Centre for my CT scan when another gentleman who I have seen a couple of times came by for his scan also. As one tends to do when there is a common  “enemy” we started talking. He is older than me and is going to have his external beam radiation prior to his HDR Brachy – the reverse of my treatment. He was a very interesting gentleman and has found his strength and confidence in his faith and his friends. While we are different in our attitudes and outlook he too shared the fear of the unknown but is moving forward with his treatment and a resolute attitude to defeat the disease. He did make me smile when he asked how you managed to eat for the time you are on your back and I explained to him my experience and recommendation. He thought it a great idea so it will be interesting to see if they proceed with the suggestion. I wish him well and hope to see him from time to time around the Cancer Care Centre and if possible maintain our common interest.

I weighed myself this morning and two weeks after entering hospital I am back at 99kgs. Considering what I have been eating, I am pretty happy with that. I do not want to go over this weight and will try to keep things in order. Again, I spoke with the dietician and she has said not to concentrate on diet too much as there are other more important battles to fight for the time being. Even so, I must remember that although I am rationalizing this to the max, I have put on 5kgs since the treatment started.

She just said to use common sense and try and maintain a balanced intake of the right sort of foods but if “comfort food” helped from time to time, go for it!!!!!!

Certainly Saturday night was pretty good; with our son and his wife and our good friends watching Australia and New Zealand go for it in the semi final of the Rugby World Cup. A glass of wine in one hand and an excellent Aussie style BBQ before the game  – life isn’t so bad at all!!!! As is always the case, with the final (Australia vs England) next Saturday night, it looks like a bunch of us will get together to celebrate or mourn the victory). These are the nights you learn to really appreciate good friends, food and entertainment!!!!

Probably it’s an appropriate time to touch on one of the other sides of treatment life. I recall mentioning that up until the treatment started I was at least sexually capable and maintained an interest (albeit less than usual) since I had started on the hormone treatment. The past two weeks has sparked not a second of interest. It is/has not caused me any problems emotionally and certainly with all the trauma that has happened with the pretty bad bruising to the penis and scrotum, the needles, the treatment itself and the constant desire to urinate, I am sure it has all added up to a significant reason for the loss in libido. It makes me wonder what may happen in the future and when all the treatment was discussed those months ago, the subject of impotence was quite high on the agenda. I recall mentioning that I feared incontinence more than impotence and would take my chances with the latter when everything had been fixed. That opinion certainly hasn’t changed and this whole experience has drawn my wife and me very close together; I feel sure both of us are coping very well without being sexually active.

A brief comment on my general tiredness may also be in order. I am waking very early and as I mentioned I am getting up quite a bit during the night. I have always favoured getting to work early and I am maintaining that discipline and being able to keep on top of my work schedule and back up some of the other lads as best I can. I am conscious of the need for some rest so I am leaving between 3.00pm and 4.00pm and coming home and having a small “nap”. I have adopted this regimen after throwing in the 12-hour day last Friday and just about knocking myself out. It took me a couple of days to get over it and I think my current schedule will continue for as long as possible into my radiation treatment.

Another week has gone by and my involvement with my work has been a wonderful tonic. It certainly has kept me occupied (both physically and mentally) and has stopped me dwelling too much on thinking about the radiation treatment which starts next week. I have already stopped using conventional soap and now use only sorbolene soap for showering and general use. Part of the instructions for the radiation was not to use conventional soap or other products in the “target area”. Not using it at all makes it easy for me!!! One of the side effects of the treatment is, I believe a possible burning in the area being treated.
Sorbolene cream is recommended to be rubbed in a couple of times a day to the treatment area to help the skin during radiation.

I must confess I am starting to get very frustrated at the number of times I am urinating. A good night is five or six times and many nights it is (on average) hourly. A big sleep is fast becoming a fantasy but when all is said and done, I am sure all this is for only a relatively short period of time in my life and if the outcome is a positive result the many nights getting up will be a memory only and I will probably laugh about it. A friend recommended wrapping myself in a few incontinence pads and taking a sleeping tablet; whist the thought is interesting, I am not that desperate yet!!!!!

Last night was the final of the World Rugby Cup. We went off to our dinner with dear friends and then watched the game; I guess the Lord is an Englishman as England beat us by a field goal in the last sixty seconds. I don’t think too many of us begrudge them the victory as the poor old poms don’t seem to take off too many world trophies at present and our State’s economy was really improved by their great ability to drink beer and have a good time. Anyway, I had a beer! A big mistake, as it went straight through me and I think I pee’d as many times as Wilkinson kicked points. It was a lesson well learnt for me.

It’s now pretty close to three weeks since the HDR and a while ago I commented on libido and interest in things sexual. I have to say the whole idea of sex is a very low priority currently. With the frequency to the toilet and a general feeling of numbness around the penis I haven’t given it any thought at all. I guess over the next few weeks’ things may change but any thoughts I had about impotency and lack of libido when all this was diagnosed back in June have certainly not manifested themselves as a problem for me at present. When I was first diagnosed I recall the prospect of incontinence rated much higher as a concern than impotency and whilst I am for the moment, impotent or lacking interest, (and time will tell which), I neither find the thought for the moment frightening or concerning. More the point, the doctors are doing everything they can to make me healthy again and that is where I am putting my energy.

The last week has seen me (if I may use the old cliché) “focusing” on my own health and well being and preparing myself mentally for the next five weeks. I have made a point of having some rest, a relatively good diet, work involvement and exercise as part of a daily mix and I am now feeling very well. I mentioned earlier that I have had moments of emotion, particularly the day I “hit the wall” after the HDR.  These feelings have come and gone over the past couple of weeks, but they have lessened and as I write this I feel strong and confident and have every intention to maintain a positive outlook during the radiation treatment.

I have now completed my first four days of external beam radiation. Firstly I have to say I have never been put at more ease than by the Radiation therapists that are treating me.

These men and women have been truly wonderful and have gone out of their way to answer the many stupid questions we uninformed people ask and also to tell me what they are doing. It is pretty intimidating for the first couple of visits lying there with the radiation therapists centering you on the table and then this big machine whirring around you as it delivers the treatment. The first visit took a lot longer then the follow up visits as they took X-rays, etc but the fourth visit was about half the time of the first. I also have to add in response to the several times I have been asked by friends, there is absolutely no pain during the treatment. It is literally like receiving and X-ray and as long as you don’t move, there are no problems!!!!

To date I have had absolutely no indication of any side effects and I am reliably informed that if they are going to happen it will not be for a couple of weeks. I am very conscientious about not using any perfumed soaps or other products, particularly in the treatment area, which is basically from my navel to my pubic bone (front, back and sides). I have found the sorbolene soap more than acceptable and will continue to use that.

I am not sure whether I have become impotent or not. I assume that I am still having some sort of effects from the HDR but certainly my libido is reduced and at present there is not a spark of interest from down below. No doubt the regular, constant peeing doesn’t help!! The funny thing is that I am not overly concerned and the lack of sex is not having any impact on my relationship with my wife at all. We are extremely happy together and certainly sharing a lot at present and if I am impotent we hope it will only be until the treatment is finished but we will worry about all that later. The important thing is our support and enjoyment of each other overcomes any of the emotional problems we may experience.

I have now had nine treatments, so I am about a third of the way there. Side effects are still not obvious although I do have a tummy problem at present. With the speed it came on I am convinced it is more a tummy bug than a treatment related problem but I will monitor it and if it persists I will bring it to the nurses attention. Life goes on as normal as we can make it bearing in mind that with travel two hours each day are involved with treatment. I think I have now met all the radiation therapists that I will be involved with over the next three or so weeks and again, I can only praise them for their ability to get the job done with a minimum of fuss but still have you completely at ease during the treatment. I think I am fast becoming known as “the talker” as I chat and laugh with them during set-up for the treatment and as I leave. I find talking can help with the mental pressure, as I still feel a little funny about the treatment.

Basically I am feeling very well and I battle to get over the concept of having something being done to me that may make me feel sick when I feel so healthy!!!

Whilst we read about the numbers of men and women suffering prostate or breast cancer, the figures don’t really hit you until you sit around the waiting room at the Cancer Care Centre and see the numbers of men and women coming through the facility. It is so sad when you discover that the treatment is only covering the tip of the iceberg and with better funded facilities there is so much more centers such as at St George Hospital could do. Whilst I appreciate the government dollar has to cover so many hospitals and treatment types, it is very frustrating to see the doctors and all the support staff working so hard to maximize the number of patients that can be treated. I was at dinner last night with some other friends and the subject of the Federal budget surplus for the year came up. Whilst there is so much demand for medical assistance throughout the Country and the Government is talking about giving all taxpayers a couple of dollars extra each week one wonders whether the money could be put to better use getting waiting lists and equipment up to date. I know that for many a couple of dollars is important but for most of us it just gets lost each week and it could be put to so much better use.

I get a three-day break from treatment this coming week as the equipment is having its regular service and maintenance check. I suppose that gives the body a little extra time to regenerate the good cells that are being hit by the radiation. I go on to an early morning treatment and that will be nice as with the 7.00pm sessions I am not eating until 8.30pm and then I find I am going to bed on a full stomach. I think the early sessions will be a lot better and allow a little extra time for some light exercise, which I have been missing recently.

That tummy bug I mentioned earlier wasn’t any such thing! It turned out to be a problem as a result of the treatment. My bowel has been hit and as the week progressed, so the discomfort and pain has increased. I finally spoke to one of the nurses who arranged for me to see a doctor to discuss the problem. I now have to insert a suppository morning and evening to help with the inflammation and hopefully cut out some of the pain. It has now been over six months since I was diagnosed and a great deal has happened to me since then, including the Brachy therapy. I have not in any of that time felt pain and discomfort such as I was experiencing. With each bowel movement I nearly burst into tears and the problem was that I was going to the toilet five or six times a day. Diarrhea became evident, albeit only a little bit.
I spoke with Joe a couple of days later and he reiterated that the treatment I was getting was very extensive and there was a risk of side effects. The condition is now being monitored and if it gets worse I understand there is going to be a reduction in the coverage area for the rest of my treatments. I really don’t want that to happen as I believe Joe is doing what has to be done to clear the cancer and I have to stay with it as long as I can.

I also managed to see the dietician and she has given me some information on what foods to eat and what to avoid. This has been a great help to me and although the pain and discomfort is still there, with the suppositories and the diet it is a lot easier. I was surprised at what foodstuffs and drinks to avoid and I never thought I would see the day when my liquid intake was reduced to water only!!!! The diet is broad enough not to feel you are missing out on anything, but I do miss the chips and other fried food that is definitely off the menu for the time being. Surprisingly I am not losing a lot of weight.

We had another problem with the machine this week and I was sent home. Having now lost a couple of days the scheduled end (Christmas Eve) has now been extended to New Years Eve. I hope it finishes at that stage, as I will then have 2004 to look forward to with the radiation finished and only the hormone treatment to handle.

I saw my 81-year-old friend last weekend and he told me he has put off his decision on further treatment for another three months. He is still on the tablets and is doing well but he and his doctor feel that another couple of months is not going to make any difference and so they are going to review his case next year. For my friends sake I think it is a wonderful idea, as I would hate to see him suffer even a little bit with radiation or an operation when it may not be necessary.

Outside of the current problem I feel I am doing very well. My attitude is still positive and within myself I am feeling pretty good. I continue to get tired of an afternoon and a little rest helps a great deal.

This is a big week for me as I have five days treatment in a row. I hope the side effects from the frequency of the treatment will result in minimum problems but I now take each day as it comes and will worry about any problems if and when they occur.

I am now a further two months down the road to when I was reviewing the side effects to the treatment… at that stage it was the hormone treatment only, but now the HDR and follow-up radiation treatment has happened and I really have no idea, which causes what???!!!:

• Hot flushes – still getting them but I now manage to cope with them.
• Lethargy – I am starting to get tired easier and tend to put things off if I can. It’s a concern and I have to address it. Is it the radiation or a side effect of the hormone treatment?
• Breast swelling – have noticed a small increase in the chest but there is no tenderness or any significant difference and certainly nothing anybody would notice.
• Impotence – I am impotent at present and again, coping with it quite well.
• Loss of libido – extremely noticeable and goes with the impotence. With the other problems I am having, sex is probably the furthest thing from my mind, so any loss of libido I have is good..
• Depression – None at all.
• Abnormal liver function – still nothing at all that I am aware of.
• Osteoporosis – have done all the tests and been cleared for the next twelve months.

So there you have it…. Changes certainly, but nothing to cause any problems either physically or mentally, so as they say – “life goes on”.

This morning I had my weekly meeting with Joe to discuss the treatment. I mentioned to him that I am continuing to have bowel problems and so we discussed the possible side effects of maintaining the current treatment. I believe the radiation is covering my entire bowel area and hence the problems I am experiencing. Joe is trying to maximize the area being treated so he can cover lymph nodes and other areas that may cause problems in the future. He told me that I do have a two to five percent chance of having the problem continue after the treatment and indeed the damage could be permanent. After a pretty detailed discussion I agreed to take the risk and we are continuing with the current treatment and they are monitoring me on a daily basis. Whilst this does scare me quite a lot, I am determined to give