Hi, I’m Phil. I am in my early 50s and have been diagnosed with prostate cancer. After surgery and radiation therapy I have been informed that the cancer has spread to my lymphatic system and there is no treatment. My condition is terminal.
I am writing this blog in the hope that my experience may assist others in a similar situation. I have other articles on my blog "philblog100.wordpress.com".
Nothing in this blog should be considered as advice. Everyone is different and needs specialist advice tailored to their individual circumstances.
Some things that I learned, not in any particular order, are: -
1. TAKE OWNERSHIP
I had to continually avoid others making decisions for me. It is my body, my mind, my finances and my family’s future at stake here. Specialists are there to provide advice so that I can make an informed decision, not to make the decisions for me. Sometimes the specialists find this hard to understand.
2. THE HEALTH SYSTEM CAN BE UNFRIENDLY
I have rarely needed the health system and found it to be a big shock. I was a small cog in an enormous financial machine. Often I was a number, not a patient. There was little consideration about the fact that I needed to plan my finances. Unexpected bills arrived. If enquiries were made it was usual for the practitioners to discuss the ‘out of pocket’ expenses, rather than the total cost. I had to stand my ground and refuse to pay for anything that I was not informed about and had not agreed to.
I attended radiation therapy daily for eight weeks. I advised that I needed appointments first thing in the morning so that I could go to work. At the first appointment I was told my appointments would be scheduled one week in advance at various times. I stood my ground and insisted that it was early morning appointments or no treatment. It was fixed. I learned that sometimes you have to get them to understand that you are paying the bills and your needs are more important than their scheduling system.
I also learned that it is important to check your health fund to avoid surprises. My health fund was one of the few who covered $5,000 worth of consumables for the robotic surgery.
3. DIET IS IMPORTANT
There was a period of months between diagnosis and surgery, as the prostate had to heal from the biopsy before it could be removed. I was advised to lose some weight to simplify the surgery. I decided to go vegan and alcohol free. This did the trick as far as weight loss was concerned, but was a mistake. To replace the protein that I previously got from meat, I used lentils, chick peas etc, which go so well with pasta, rice etc. All of these are high in carbohydrates, which convert to sugars, which feed cancers.
My diet is now designed to get energy from good fats rather than carbohydrates. It also helps to keep me detoxed, alkaline and calm. This is achieved though balancing proteins, healthy fats and fibre, with supplements to aid the process and (hopefully) inhibit (or reverse) cancer growth. Consumption of carbohydrates is minimized.
The lesson I learned is to do the research properly to avoid well intentioned mistakes. It is disappointing that the mainstream medical world did not provide some guidance about diet and cancer.
4. SPECIALISTS ARE NOT SUPERHUMAN
They are human and can make mistakes. Some specialists were great to deal with, compassionate and direct, others were less so. I encountered some who placed their egos and reputation ahead of my health and well being. They knew their areas of specialty well, but there was no holistic approach to my disease or treatment. My GP was my rock in a strange world. Some examples are: -
After I had been through two years of physical and mental turmoil, one specialist informed me that there was no further treatment available, that my condition was terminal and I should attend to my bucket list. As if to absolve himself he then stated that I was probably too far gone when I first came to see him. This information was certainly not given to me at the outset, indeed he had pronounced me lucky to have come to him before it got too bad. If I had been informed of the true situation at the outset, it would have influenced my decisions on treatment.
One specialist sent me into a dark depression for three days after advising me to stock up on 500 man pads to deal with incontinence following surgery. I was very fortunate and had no incontinence issues. I used 10 pads and only as a precaution. Luckily I only bought 20. What would I have done with 490 surplus man pads??
One specialist advised me that the costs of treatment options were similar. I later discovered that one treatment was one quarter of the cost of the one that I chose.
Other incidents taught me that specialists will place their concerns about their reputations and legal liability well ahead of the patient’s need for transparency and integrity in communication about treatment and complications.
Medical practitioners did not always know as much as I expected them to. There were several occasions where incorrect conclusions were reached, only to be changed after I queried them.
There are plenty of other examples available, but the lesson was clear. Some of these people do not seem to appreciate the full impact of what their patients are going through. Often compassion is the first casualty when there is a conflict of interests.
5. RESEARCH IS ESSENTIAL
Research was difficult, but it was important. Once I started looking for information I was overwhelmed. The internet was a great source of information (including bad information!). Family and friends often provided various alleged cures/treatments. It is impossible (and maybe dangerous) to try them all, but it is good to have options to consider. Some were right for me.
One example is oxygen therapy. Some people believe that cancer cannot survive in a high oxygen environment. A hyperbaric chamber can do this, but was not available as it is not “proven”. Given the high mortality rate from cancer I can’t believe that traditional treatments are considered “proven” and other treatments are not permitted.
I wish I had been more investigative and questioned the specialists more thoroughly at the beginning, rather than trusting the system.
6. SUPPORT IS CRITICAL
I did not use support groups (it’s a man thing). I am fortunate that I have a terrific family that helped me enormously. The odd thing was that some people you expected to be there for you could not deal with it, and support came from some unexpected quarters.
Many people are frustrated as they do not know how to help. I often had to say that I am in the same situation, and ask them to be there, to keep in touch, and to send positive vibes.
7. THINK OUTSIDE THE SQUARE
It was not until I was drained physically, emotionally and financially by the mainstream medical system and was dumped on the scrap heap that I finally thought outside the square. I should have done this at the beginning (as my wife reminds me!). I attended a health retreat (their attitude was that given the right environment the body has an amazing capacity to heal itself). Very valuable. They recommended attending a craniosacral therapist (weird experience, but valuable). He recommended a meditation retreat (on the basis that I had heaps of “stuff’ to deal with and until I got my head right my body could not help). Also very valuable.
The lesson I learned is that there are options outside the mainstream medical path. Different things may work for different people so it is worthwhile exploring the alternatives, either as an adjunct to mainstream treatment or independently
8. CONSIDER THE IMPACT ON OTHERS
I have been the centre of attention for the last three years. In that time there has also been a considerable impact on my family, which was given inadequate attention. I don’t appreciate fully what they have gone through, and are still going through, so I do not know how to respond to their needs. This is disappointing.
9. CHANGE IS IMPORTANT
One of the biggest challenges that I have faced is taking this seriously when I have never had any symptoms or side effects from cancer (plenty from treatments, but that’s another story!). The cause of the cancer is not known. Something in my life created this situation. It was naive to think that interventions would help fix me and stop the cancer from returning unless some major changes were made to my habits/lifestyle.
Once again, with the benefit of hindsight, I wish I had attended the health and meditation retreats immediately when I was diagnosed. This would not only have helped deal with the treatments, but would have given me a two year head start on my changed life. These two years could prove critical
10. TIME TO MOVE ON?
My medical condition has dominated my family’s existence for the last three years and has caused much anguish. It may just be the right time to move on and try to experience life without the burden of constantly thinking about it and attending quarterly specialist visits to review test results when there is really nothing that can be done. Maybe this is easier said than done, but I will give it a good try…
No doubt there are other lessons that I have learned that I have not identified. I am sure that there are many lessons yet to come.
If my experience can help just one person to better navigate the cancer maze then my goal will have been achieved.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.