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since May 2004

The colonoscopy was performed on July 4, 2003 and some days later when the biopsy results were available, Dr John Freiman diagnosed Ademo-carcinoma in the rectum. Bluntly put, Cancer. Why me??? I ate my crusts and Brussels Sprouts when I was a kid! I was then told that surgery was indicated urgently.

Colorectal specialist Dr Shevy Perera saw me that same day and then arranged the surgery for 4 days later. A very long 4 days.

I entered the St George Private Hospital and my private room on July 15, 2003.The room was very nice, with a sweeping view from the large window and looked out over Botany Bay and Sydney Airport and across the other side of the bay to Kurnell. Stomal Therapy Nurse Sister Vicki Patton came in to see me and explained the forthcoming procedure and what I could expect to see after the operation. She also introduced me to the Colostomy appliance that was to become a part of me for the rest of my life. I must say that I was not particularly happy about this appliance thing and as I write this, even less so. However Vicki is very nice and gradually worked on my lack of enthusiasm for a procedure and device which is, I came to realise, indeed lifesaving.

Lifesaving it is as the result of an ignored or unattended cancer is well known. Therefore I had to knuckle down and accept the situation as such but at times I still find that hard to do.

Dr. Perera performed the Abdomino Perineal Resection (or Colostomy). The following days were misery personified. I was sore, bleeding, and had tubes hanging out of me in the most embarrassing of places. I also had a new bright red thing on my abdomen, which was described to me as a STOMA a Greek word meaning Mouth. Mouth? Does not seem altogether appropriate to me. The Stoma is bright red because it is in fact the bowel itself. I soon learned that one has to be very gentle with the Stoma as it can be made to bleed easily. It possesses no sensation due to a lack of nerves so I could not know when it would pass faeces, and I have no control due to no longer having Sphincter Muscles that are normally in the rectum.

Another problem was soon apparent. I have a lot of body hair, all over. This was a real nuisance to the nurses who had to apply and remove adhesive plasters and heart monitor sensors to various parts of my body. Because the appliance has a large adhesive pad I began to shave the area around the Stoma to facilitate removal of the appliance a little more readily. Also, the risk of infection of the follicles from "ripping the hair out" is real given the matter in that vacinity. It quickly became apparent that shaving could be damaging to the Stoma if touched with a razor blade. The answer was a Mustache/beard Clipper! This is a small hair clipper, rechargeable and at a low cost from our nearby department store. Perfect for the job.

All of the lovely young ladies, nurses, who entered my room seemed to want to look at either the Stoma or the stitched area where my rectum and anus used to be. I should have sold tickets! I have always been an old fashioned private person and certainly not used to exhibiting such parts of my anatomy to young ladies.

After the operation, Dr. Perera visited and advised that with the removal of the rectum and anus, the whole cancer was removed. The good news being that it had not spread to the liver that is usually the first organ to be affected. However, the cancer had spread to the lymph nodes although only one of the twenty-three removed was affected. The next news was that to be sure of the best possible end result, chemotherapy and radiation therapy was advisable.

My first shower after the operation was the next morning and by my request. This proved to be a difficult and painful experience. I enjoy my hot shower and didnt want to miss out on it. So, with a nurse assisting, I had my shower and added a further loss of dignity! I find it very difficult to stand in my naked form in front of young ladies. After all, being a 70 year old and heavier than I should be, coupled with the range of drain tubes, catheter and nosagastric tubes and their associated bags and contents along with the IV machine didnt make me a pretty sight. However, I still enjoyed the hot water and its therapeutic effect anyway!

That same morning the physiotherapist arrived and we went for a very short walk. Now that was hard. My abdomen was cut and stapled from the navel to the genitals and from that small area behind the genitals up to the point near the coxic where the anus had been removed. Walking was the last thing I wanted to do. However, we walked. I discovered that Physios will not take "forget it" as an answer. I will admit though walking is essential to get the muscles working again and prevent blood clots. Surely tomorrow would not have been too late?

Of course no procedure would be complete without the IV drip being administered via a Canula inserted into a vein on the back of one hand. The machine that controlled the drip rate had a nasty habit of calling for attention throughout the day and night. I was not sleeping well so the beep beep beeps at night were somewhat unwelcome. The saving grace though was that the night view from my window was spectacular and very soothing.

Meal time. Oh dear, that awful watery broth and very little else did improve my waistline a bit, but certainly did nothing for my taste buds. Finally, after a week, I was given some full tasty meals. Then later that same day vomiting began due to a bowel obstruction. The nosagastric tube was inserted again and periodic checks were made of the contents of my stomach. This invasive device is a hard clear plastic tube that is fed up through the nose and down into the stomach. At least it did on the second attempt, the first saw it go down the windpipe instead, was withdrawn and inserted again. It is a horrible experience and makes the throat and rear of the nose very painful. At various times a syringe is plugged on to the end and samples of the stomach contents taken. This happened three times during my stay although the tube entered my windpipe only the one occasion.

Vicki visited me a number of times and I soon came to appreciate her calming approach to my new Stoma and the awful things it does. Not only does it discharge faeces but it makes noises too. I was shown the various styles of bags or appliances as I prefer to call them, and she assisted me no end to come to terms with my new method of "going to the toilet".

Finally the drain tubes were removed and the staples that held my abdomen together unclipped. Then along came a delightful young nurse who I had known for most of her life, and removed the catheter. Wow! embarrassment reigned supreme! She had with her a young and conscientious University trainee so I was under close inspection again!

Dr. Paul De Souza visited me and we discussed at length the chemotherapy procedure, the reasons for it and the possible and probable side effects along with a starting date. He also explained that my cancer was a "Dukes group C" so I needed to accept every advantage that was available.

I was discharged from the hospital with mixed feelings. While I wanted to be home with my wife of 40 years, the hospital represented safety or instant attention if things went wrong. After all, things were going wrong, one after the other. So, on the 15th day, I went home having been there longer than the usual eight or nine days.

Vicky had placed my first order for the appliances that I was going to need and these were waiting for me when I arrived home. Even though I practiced applying these under Vickis expert supervision, I still got a couple wrong and DISASTER! Oooh! what a mess! I have learned from those mistakes however and the system works for me now.

The appliance always seems to need changing at the most inconvenient times. When I undress for a shower and remove the appliance the Stoma would sometimes choose to begin discharging faeces and if I am not careful or prepared for it, the faeces falls where I stand. Remember that there are no longer any controlling sphincter muscles. I have worked that problem out now and make sure that while the appliance is off I provide for it although the activity can be tricky while drying oneself with a towel!

There is a method of controlling this, Irrigation. Having seen a video instruction program on how it is done I came to the conclusion that I needed help and advice from Vicki so I had the process demonstrated to me while in hospital the following December (due to yet another bowel obstruction). The process is simple enough and gives up to 48 hours of freedom from Stoma activity thus giving a very acceptable measure of control.

The appliances, also known as pouches or simply as bags, are very well made and surprisingly are available free on our health care system through the Ostomy Association. (I have found that the Association has a large number of volunteers and their service to us is nothing short of superb). Vicki also arranged my first membership at the same time. I really cannot imagine what I would have done without Vicki; there was so much I needed to know.

Chemotherapy started in August and continued until the end of February. I had heard many discouraging stories about the subject, though I have since found that the few side effects are uncomfortable but with the exception of the two days immediately after, have not overly effected me. The worst effects are the feeling of nausea, mainly the following day, and that excruciating tiredness. There are some other more subtle effects, I have lost some feeling sensitivity in my fingers and on the day after the Chemotherapy my teeth feel kind of loose. I have not lost much hair, although its growth slowed right down and I saved on haircuts!

The Chemotherapy system seems simple enough, a Nursing Sister took me into a room where comfortable arm chairs line the walls. I sit in one of these and a Saline Drip was set up through a Canula in the back of one hand. The first IV drug is Folinic Acid and its function is to open up the cells to accept the Fluorouracil (5FU) which is administered around 20 minutes later. Fluorouracil (5FU) is the chemotherapy drug used in my particular case. Almost immediately I had a strong metallic taste in my mouth but otherwise there was no other reaction until later in the day. Fatigue followed by nausea for the first afternoon and the following day is probably the worst reaction and the nausea can be controlled, by taking a Maxolon tablet. Usually the side effects have eased in two to three days. The Nursing staff in the Chemotherapy department are a wonderful group, caring and pleasant and made that aspect of my treatment so much easier to take.

During the early stages of Chemotherapy a new problem appeared. I went to see Dr Perera thinking that some problem had arisen from the bowel operation during which the Anus Rectum and a part of the Colon had been removed. Dr Perera then referred me to Dr Paul Cozzi, a prominent Urologist. It was my Prostate! All I needed right now! After a painful period that saw me being invaded with a Flexoscope through the Penis. Enlargement was the verdict but not cancer. That was a break at least. However, a sign of more surgery after the Chemotherapy and Radiation treatments have finished. In the meantime, the function is controlled using "Flowmax" capsules. The worst part of this is that the Radiation Therapy will accelerate the Prostate problem and it will be a race to complete the treatment and have the operation, which the Surgeon succinctly put it to me as, "a re-bore."

Radiation treatment began on January 6, 2004. 28 treatments performed on a 9 day fortnight basis. Every second Monday was a "lay day" due to maintenance on the Linear Accelerator.

The system here is different to any medical procedures that I have encountered before. Quite frankly the people who operate the Cancer Care Centre at St George Hospital are remarkable indeed. From the receptionist Ladies who sit behind the big horseshoe desk and mark us off as we enter the building amongst other duties, to the Nurses, Dieticians, Clinical Psychologist, and volunteer ladies we experience a pleasant greeting with a smile and calming attitude. Even the patients waiting for their turn for treatment seem to have empathy for each other making the whole episode almost a "club atmosphere". The therapy did leave me tired too and towards the end, skin burning and especially so when changed to a different Linear Accelerator with three sessions to go. The emissions from the machine are in the X-Ray spectrum but rather much stronger that a normal X-Ray that we are used to. The planning is careful and thorough as is the treatment itself. Performed by a group of Radiation Therapists, their cheerful courtesy is very calming in what could be a frightening experience for some. They are a special group of people.

With Radiation Treatment completed, I am able to treat the burned skin. The genitals suffered most due to the sensitive nature of these organs. The area between the two cheeks of my bottom where the surgery had taken place became red raw and very painful making sitting undesirable and walking rather less than pleasant. The radiated area was treated twice daily with "Sorbaline" a moisturising Lotion but now that the radiation is finished other appropriate treatments were employed. The Prostate too is badly affected and will probably require some surgery to "make it right".

The Radiation treatment consisted of 25 sessions on one type of Linear Accelerator and three sessions on another with a very much stronger beam but more concentrated in area.

Looking back, even though I still have difficulty coming to terms with the way in which my natural function has been altered. I am more than grateful for the expertise and courtesy of all of these people from the Surgeons, Nurses, Radiologists, Physios, Psychologist adviser, Dietician, Kitchen staff plus those who I dont know about, for their part in extending my life. A life which, without their efforts, would undoubtedly have ended very much sooner than we have come to expect.

I am compelled, at this point, pay tribute too to my Wife . Without Beverleys loving support and where needed assistance, I would never have survived to this point. It is not easy to have ones near life long spouse so very ill and so many times and have that helpless feeling, sitting, watching, hoping. Whether or not it is justified, the very word Cancer conjures up a traumatic reaction of its own in many of us. We are a close couple and being so close does make these situations that much harder to accept. Now that my treatment has finished, I realise that there is a life after Cancer, and If I take care of myself and attend the various annual check visits to my Doctors, then I can look forward to the life span that I had always expected.

In my opening paragraph I mentioned the word terror. While this is true, I am not frightened at the thought of death, heaven knows that I have been close enough in times past, but I cannot bear to think about what I will miss out on after my time is up!

However, life is too short to sit and ponder over negative thoughts, I have to get back to where I left off cancer notwithstanding. The surgical team removed it all and with the added insurance of chemotherapy and radiation oncology I believe that I can look forward to many more years yet. After all of the expertise and technology that has given me so much, it is unthinkable that I do not do my part with positive thought and actions.

My hope is that you, the reader of my story, never have to experience any of this. There is nothing in the world more valuable than good health. However, if you do happen to be a cancer patient, keep your chin up, there are better times ahead.

In May and June this year we toured UK, Republic of Ireland, Europe and then went on to Calgary Canada to vist our eldest daughter who lives there permanently. Beverley, my Wife, Best Friend and Soul Mate, decided that we would have this trip together now because cancer is unpredictable and she didn't know how much longer she would have me. Well, we had a fantastic time albeit very difficult for me. Beverley assisted me tremedously as did the other travellers on our coaches. There are very nice people around. Many of these special people we simply call nurses. Angels would be closer to the mark as you would know only too well.

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