A CARAVANNER’S PROSTATE CANCER JOURNEYProstate cancer is a real issue for men. It shouldn’t be ignored. Paul Maggs describes his journey. By Paul Maggs My wife, June and I are keen caravanners and in 2007 we were looking forward to getting away to Darwin via western NSW and western Queensland from our home at Middle Arm which is 20km outside of Goulburn. June’s friend from New Zealand would be in Darwin on holidays in June. After Darwin, we were to travel to Cairns and to Cape York and then make our way south, returning home about October. We were intending to get going soon after the Canberra Marathon, which was on Sunday 15 April and for which I had been training since the previous December. I am a keen runner and usually run two marathons each year plus many other runs. In 2006, after running the Canberra half and full marathons, I ran a 10km fun-run in Kalgoorlie and the following week in Perth. I did much of my training running along the Stuart Highway out from Port Augusta or on the Oodnadatta Track out from Coober Pedy or around towns early in the mornings. It is a great way to ‘case’ a place out. I also ran the half marathon in Darwin in July 2006 and then the Alice Springs marathon in August, as well a the City to Bay in Adelaide in September and finally running in the Masters Games in Alice Springs in October. As you might gather I am a fairly fit person and had never been in hospital more than a few hours. However, since I turned 50 years of age I have gone for an annual medical checkup as I was told that was the sensible thing to do. 2007 would be no different; I had to fit in a visit to the doctor before taking off in the caravan. As I was looking for a new doctor, I decided to visit June’s female doctor, as she had a good reputation. Further, I had somehow been reassured by someone that prostate cancer was now checked by a simple blood test and so I had in the back of my mind that the doctor would not be putting her finger up my back passage as the male doctors had done over the last so many years. The thought had occurred to me that I could put my annual checkup off until October or November after returning from our caravan trip up north, as I had a lot of work around the house to finish prior to leaving on our trip. Thankfully I didn’t. At my first visit to the doctor in March, I was given a referral for a heart test and a number of blood tests. I also mentioned to the doctor that an elder brother had prostate cancer, which had spread to his bones and he was on hormone treatment as it had been too late for him to have an operation to remove his prostate gland. At this stage I had little understanding of prostate cancer. At my second visit to the doctor a few weeks later, I was told that all was fine and that my blood test for prostate cancer was in the ‘normal’ range (PSA, which I now know not only stands for Public Service Association but also for Prostate Specific Antigen, which is a protein produced in the prostate gland and a high count can be an indication of cancer.) Because I had a brother with prostate cancer, the doctor advised me that a digital test (finger up the back passage) was desirable. Then the doctor said “I would like a second opinion.” I made an appointment for the visiting specialist, a urologist from Canberra, who visits Goulburn once a month. At this stage I was still thinking that we would be away in our caravan as planned. My appointment for the specialist was the Monday after the Canberra marathon in April. I was still of the opinion that he would give me a clean bill of health. The specialist gave me the digital test and agreed with the doctor that something wasn’t right, so organized a biopsy. On 10 May I had biopsy in the specialist’s rooms in Canberra, accompanied by my wife, as I had been told that it would be a good idea not to drive after the biopsy. Plus by this stage the idea of me having prostate cancer started to become a possibility and my wife wanted to be in on this. In my case, the specialist took eight pieces. I was only on his table for about 20 minutes in all and it did not particularly hurt, but I didn’t feel too flash for the next few days. Looking back on this time, I am pleased that I was retired and that I did not need to rush back to work. The biopsy affected me a bit more than I realized at the time. The specialist requested that I ring in seven days for the results. The day came and I decided to wait until 9am before ringing. However about 8:05 am I received a phone call – it was the specialist ringing me. The biopsy proved positive. I had prostate cancer in three of the eight samples taken and its aggressiveness was 8 out of a possible 10. I felt stunned. My wife was beside me and knew without me telling her that it was bad news. The specialist then gave me a phone number so that I could arrange for various X-rays and a bone scan, all on the one day and then to see him as soon as I had the results. About two mornings later, as I was lying in bed and I wondered if the specialist had got my results mixed up with someone else’s. I did not feel sick, I was too strong and healthy. I found out later that this is a common reaction. Prostate cancer, perhaps like any cancer, is such that you can feel very healthy with no or few symptoms and yet have it quietly growing inside you. As they say when you feel sick, it is usually too late. Thank goodness I went for my annual checkup when I did and that I was not too coy to have a female doctor check me out. If I had waited till November, after returning from our caravan trip up north, I may have been writing a very different account. On 23 May I attended John James hospital in Deakin, Canberra, for a chest x-ray, a CT scan of the abdomen and a bone scan, for which I had to have an injection of a nuclear substance. My wife and I were really impressed with all the staff, both their professionalism but also their kindness. The specialist looked at the results of the x-rays and scans of the previous day. From them he was able to tell us that the cancer had not spread. However, he warned that these tests do not pick up minute cancer cells. But so far, so good. It was good news – the cancer was probably confined to the prostate gland. The specialist then went over a list of options, the two that stood out was a radical prostatectomy (surgery to remove the prostate gland) or radiation therapy. He gave us a booklet which explained all about the prostate gland and what cancer was and the treatments and their side-effects. He requested that we think about the treatments and to return in two weeks. I have mentioned that an elder brother had prostate cancer. It was now that I told my younger brother about my cancer and after having read the booklet, I informed him of the family link; men with a family history have a higher risk. That is, if a father, an uncle or a brother has had prostate cancer. My younger brother, with the encouragement of his wife, went to his doctor for a blood test and insisted on the digital test. He was told there was nothing to worry about. However, with two brothers diagnosed with prostate cancer he insisted on a biopsy. About six weeks after me he was diagnosed with prostate cancer, aggressiveness of 7 out of 10. I have mentioned ‘us’ and that June was keen to come with me to see the specialist. At these times it is not only a great support to have your wife with you, but it is very practical as two pairs of ears are better than one. It is amazing how each can remember different parts of what the specialist said. Further, it has been brought home to me how much we are partners and what affects one affects the other. Well by this time I knew that there was no need to get the caravan out ready for packing. This was the stage that we read everything we could get our hands on about prostate cancer; I went to the local library and one book that stands out is, What Women (And Their Men) Need To Know About Prostate Cancer by Irena Madjar. This book emphasized how prostate cancer affects the woman as well as her spouse. I also searched the internet. There are so many articles and sites that it is easy to get lost with too much information and no way of gauging the validity of many of the statements and cures that are proposed. However, some internet sites were helpful, especially, www.prostate.org.au (The Prostate Cancer foundation of Australia) and www.prostatehealth.org.au (Lions Australian Prostate Cancer Website). Also www.urologysydney.org. (This site was supplied by my brother, has good information and would be useful to anyone in the Sydney area). At this stage I let my family and friends know about my diagnosis. It was a supportive time for although my family has always been close, the diagnosis of the three brothers having prostate cancer has drawn us even closer together. Apparently, according to one book I read, the connection for the men of a family may have an equivalent connection for the women of the family in regards to breast cancer. It was amazing how everyone knows someone who has undergone the radical prostatectomy operation and are doing fine now. My friend in Hobart underwent the operation about six years ago and told me all about his experience. He is happy and has been told by his specialist that he does not need to see him for another five years. I also met in the supermarket in Goulburn a man with whom I had done a farm course. He told me about his prostatectomy done by the same specialist who was to operate on me. Looking back now it was these reassuring stories that stood me in good stead and gave me hope of a complete cure. On 8 June we returned to the specialist, told him that I would be happy to undergo the radical prostatectomy operation. He reassured us that we had made a good decision. There and then we were booked in for surgery on 12 September at Calvary Hospital in Canberra. He told us that he would like me to undergo hormone treatment for three months to shrink the gland before the operation. He wrote out a script which we picked up in a chemist in Canberra and returned immediately to our doctor in Goulburn to have the hormone Zoladex 3.6 implant injected under the skin of my stomach. I had this done three times, every 28 days. There was a whole list of possible side effects including skin rashes, painful joints, hot flushes, sweating or feeling faint, headaches, mood changes etc. I did not feel any significant side effects, but I must admit that I lost my energy, was a bit more listless and probably my libido dropped a bit. My wife thought that I had mood changes. I was encouraged to keep up exercise so I entered myself in the City to Surf for Sunday 12 August and started training each morning. I was up to running 10km each morning but gradually found that I just did not have my normal zest, especially the week out from the run. On one morning run by the time I had reached 6km it felt like I was up to the last few kilometres of a marathon. I was totally exhausted. My wife suggested that I should not run the City to Surf. After a few days of thinking about it, I agreed. It was the right decision. I watched it on television. The three months seemed to be a long time. But I had a number of jobs around the house to keep me busy. During this time we received notification of the pre-admission interview at the hospital, which we found to be very informative and reassuring. The anesthetist also sent us information and a form to sign and return. I do not think I particularly worried about the cancer or operation. Knowing that others have been through the same operation and were happy now gave me much comfort and confidence. And further, my wife did all the worrying for both of us. We have always been close, but I think facing this together has drawn us even more together. I think I have changed a bit in that perhaps now I am more ready to tell my wife how I am feeling. There are not too many of my secrets, ‘men’s business’, that she doesn’t know now! As we had a few months prior to operation, we packed up the caravan and took off, staying the first night at the Stockton Caravan Park. Despite the rainy weather, we went out onto the beach and looked south and saw the tanker, Pasha Bulker, washed onto the beach at Newcastle. We then made our way to Port Macquarie and stayed there for a few weeks. We stayed at the Breakwater Caravan Park, which is right on the water and close to the town centre. Soon after arriving at Port Macquarie I visited a doctor who inserted the second of my hormone inserts. From Port we went to Coffs Harbour, Lismore, Toowoomba and then Brisbane, where we stayed at Newmarket Caravan Park, which was great for getting a bus into Brisbane. From Brisbane we stayed at the Broadwater Caravan Park on the Gold Coast for a few days prior to returning home in time for my nephew’s wedding in August. The caravan trip was great for visiting relatives and getting my mind off the upcoming operation. It was whilst we were at Lismore that I had the third of my hormone inserts placed under the skin of my stomach. We arrived back home in early August in time for the wedding. This was a great event and good time to catch up with all the family. The three of us with prostate cancer were together. I asked my wife to take a photo of the three of us. I have since sent copies to my two brothers with the caption: “three amigos; the prostate brothers” In a true sense we have been drawn closer together because of our shared cancer. The day of the operation eventually arrived, the 12 September 2007. We were up before 6am and I had a light breakfast, but no cereal or milk. I was to fast from 7am and my admission was 11am. We packed the boot of the car with all that we thought we might need, including my laptop and books. We arrived at the hospital about 10:15am and my wife collected the key to her room at Rotary House, which was to be her accommodation on the hospital grounds for the next eight days. It saved her having to return home each day or booking into a motel. It was only about 300m from my ward. I was admitted at 11am and taken to my ward and bed. I changed into one of those hospital gowns that tie at the back and then sat on the bed. I was also given white stockings to put on my legs, apparently to prevent blood clots. The anesthetist came soon after and told me he would give me an epidural and described the procedure to me and answered all the questions my wife and I had about the operation. I had been told by a friend all about the epidurals that he had and he had allayed my fears of the needle going into my back. I was not particularly feeling anxious but my blood pressure was up. I admit I felt a little like I feel prior to a marathon, a little tense but knowing that all I had to do was to take one step at a time and eventually after some pain and endurance, I would cross the line. At about 1:20pm, I said goodbye to my wife and was wheeled down to the lift and along to the operating area. The anesthetist put a needle into my left arm and gave me some sedatives. Various nurses introduced themselves. One joked that none of the patients remembered them. The specialist appeared and said hello. A nurse who was studying for her registration was to observe the operation and as she was working on the ward afterwards she was able later to answer my questions about the operation. I was then wheeled into the operating room and three or four hours later someone was calling my name. I became fully conscious very quickly and the only thing that hurt was my sore throat. I realised the next day that I had a tube through my nose down my throat and into my stomach, from which the nurses extracted some liquid from my stomach for the first two days. I had an oxygen mask over my mouth and nose, a drip tube into my left arm, a catheter out of my penis and a small bag draining the wound. The epidural was still in my back for the first two days. I felt no pain at all from down there until they took the epidural out on the third day. Even then I had no pain as such; only when I moved or coughed did I feel the wound. After the third day I was given two Panadol about four times per day. I was also given antibiotics through the drip tube and daily injections into my thigh, which had something to do with preventing blood clots in the legs. I continued to wear the white stocking whilst I was in hospital. The operation was the easy part, at least for me. The next few days were difficult because I could not move very much with all the tubes in me and I developed a heat rash which made me miserable. On the second afternoon the physiotherapist got me out of bed and sat me on a chair. I felt faint and called for a bucket as I thought that I was going to be sick. I was soon back in bed. The next morning the nurses got me out of bed again and I did a little better, but mainly just sat in the chair for a short period. But I was determined to do better and requested a nurse to get me up in the afternoon – I knew I felt better and with the drip hanging from a pole and the catheter bag in one hand I struck out into the corridor. I was pleased with myself and did not look back in regards to getting around. The rest of the time in hospital I spend walking the corridors with my wife, visiting one of the hospital cafes and even going out into the sunshine. Each day things got better in that each day the nurses removed firstly, the tube from my stomach, then the oxygen nose piece, then the A couple of times during the week I just sobbed. I did not understand why. This was a complete surprise and came out of the blue, straight from left field without me seeing it coming. My wife sat with me and explained I have been going through this since March, through hormone treatment and then a major operation and it was just tension relief. It is amazing how the human emotions work, I have been reassured that I am just ‘human’. On the sixth day the specialist visited and told me that the examination of the gland taken from me had showed that the cancer was confined to the gland but was close to the wall. I was lucky that the cancer had not spread outside the gland. However, it will need monitoring for the next so many years. By the seventh day I was starting to feel so well that I knew that I was ready to go home. The nurses starting pulling out the tube that had been draining my wound. Each day they pulled the tube out a few centimetres. This hurt a bit the first day, but nothing that mind over matter could not deal with. Half the staples in my wound were taken out on the eighth day, which did not hurt at all. On the ninth day, the morning on which I was going home, the rest of the staples came out as well as the tube draining my wound. I only had the catheter and bag still in me. The nurses instructed my wife and I on how to manage with bags that you tie to side of your leg and also the overnight bags. It was all pretty simple really. The main issue was to make sure that you washed your hand to avoid any infections. An infection in the wound or bladder would be bad news. I managed to avoid any infection. Arriving home was great and I was feeling great. My wife rushed around doing various tasks not allowing me to carry anything and not even to bring in any wood for the fire. With the catheter still in I had to be careful of where I sat as sitting on a hard or convex chair could cause pain down there. It was a few hours after arriving home, as we were sitting together in the lounge room that my wife started to weep. She did not know why she was crying. It was my turn to comfort her and to point out that she too had been going through this cancer with me since March. Over the months she had done most of the worrying and had been strong and caring for me. I have mentioned a number of times how thoughtful people have been either ringing to find our how I was faring, sending a card or visiting at the hospital. Well sitting at our front door when we arrived was a bottle of red wine with a get well card from one of our neighbours. It is good to have neighbours like that. Two major issues that the literature speaks of in regards to the radical prostatectomy operation are incontinence and impotence. We were warned of incontinence, the need for pads and that incontinence can last even up to six months or more. I have been happily surprised that I have had no problems with incontinence; it must have been all the running that I have done over the years that has stood me in good stead! And the other major issue: impotence. So far, not much activity in that area. I have been assured that this can change in time. At the end of October we had another appointment with the specialist. He gave us some advice regarding the impotence and he also discussed the cancer and said how it had been spread around the prostate gland, with aggressiveness of eight and at some points was close to the wall. He again stated that small cells can escape and one can not tell that all has been confined to the gland. This brought us up with a bit of a shock as we have been so positive since the operation and feeling that all had been confined to the gland. We had a further appointment to make in three months time and to get a blood test done the week prior. This will no doubt be an important test as it should be close to zero if all the cancer has been caught. But I am aware that it may be a number of years before the specialist will say that I am cured. On Monday 18 February 2008 I saw the specialist again at Goulburn. My PSA count was 0.1 and that the urine test was good. I was relieved to hear this result. I am aware that many other men have gone through similar or perhaps different experiences to mine in regards to prostate cancer. However, perhaps the important point of my story is not to put off the annual check up – have the check up before you go on your next trip. June and I hope to be off in a new caravan by July and we might be off to Alice Springs for the Masters Games in October. Perhaps we might meet along the road or in some caravan park and share a beer or at least you might wave to me if you see me running early in the morning, somewhere along a road of this great beautiful country of ours. |
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