Well, I had got through the trauma of the initial diagnosis and made my appointment for the next week to see the referred Oncologist. Like I always do, I googled him and he seemed to be at the forefront of his field, which I was pleased with. I like people who are known to be good at what they do.
I showed up at the surgery, which was an old house in a Posh suburb in Melbourne. As usual I was kept waiting. I hate this about Doctors, the assumption that their time is so much more valuable than mine. I was admittedly nervous. After 30 minutes I was ushered into a room where a rather nice looking, tall older man introduced himself as my new doctor. I introduced myself and explained that he might consider me to be a difficult patient, as I liked to ask lot’s of questions and was known to sometimes argue back. He smiled and said questions were welcomed. I then explained that I was just as clever at what I did, as he was at what he did,so I expected to be spoken to with respect and detailed responses to my questions and that I would research everything he said. Again a wry smile and I slight roll of the eyes to indicate reluctant acceptance of my terms.
He spent some time reviewing my tests and results. He then looked up and started to explain that his recommended treatment was a full radical hysterectomy. He explained that the ultrasound and biopsy results gave no indication of what stage the cancer was at and he would only know that once the uterus had been removed and biopsied. He said that he recommended removal of both ovaries but would have to decide whether taking my lymph nodes would be necessary during the surgery. This was as surprise to me so I explained that this would be a major problem for me due to the fact that my left leg and been through a number of major traumas, and was prone to constant pain and swelling. Removal of lymph nodes was going to be an issue. He agreed and assured me that during the surgery he would get the nodes biopsied, and only take them if they showed some sign of being cancerous. I was pleased with this.
He then went on to explain that the surgery would involve a rather large scar, since he could not do keyhole like in some hysterectomies, due to the fact that they needed to lift the uterus out whole, so as not to open up the possibility of releasing the enclosed cancer into the system.
He went on to explain the impact of the radical hysterectomy was that I would be thrown into full-blown menopause immediately after surgery and that this could be difficult. I said I would research it so I would know what to expect. (Later blogs will go on to explain that no research on earth would explain the ultimate impact on my life, this would cause). He also explained that, until they had the biopsy results he would not be able to tell me yet whether I would need any further treatment such as chemotherapy or radiation.
He wanted to schedule the surgery for the following week but I explained I was going to Noosa for a week with my sister and it would have to wait until I returned. He was not happy but I said it had taken so long for the stupid GP’s to get me to a point of diagnosis, that one more week wouldn’t hurt. He accepted this and scheduled me for 10 days from then.
As with the gynecologist I again asked about the possibility of anything else being wrong. Like the other Doctor he said “what do you mean?”. I said, well how would polyps make my ovaries feel like they had grips on them. I also said why do I feel so nauseous , and why are my shoulders hurting? I said I understand that these symptoms don’t necessarily fall into your area of expertise but did the ultrasound show up anything else and was it possible that I had more than one thing wrong with me??? Just like the other Doctor he quickly re-looked at the results and said no nothing that he could see. I repeated “are you sure?” and could he take another look at the ultrasound results. Not happy with me questioning him he insisted , there was nothing. I wryfully reminded him of the my terms and conditions of our relationship. It was My Body, and I expected him to respect my right to ask questions. Again with the roll of the eyes. He stood up, shook my hand and said he would see me at the hospital in 10 days time.
I went home and rang my Mum and sisters and a couple of good friends to fill them in on the course of action. I think everyone was impressed with how stoically I was handling it all. I NEVER panic so could see no point in falling apart, just get on with it.
I went to work the next day and just got on with things. I got on the Internet and researched all the things the Doctor had told me so I understood everything.
That afternoon the nurse from my local GP called to say how sorry she was about my results. She asked about the cancer and then mentioned “what are you going to do about the gall bladder, the ultrasound shows it is pretty bad?”. GallBladder, what Gallbladder I said. I then asked her to email a copy of all of my ultrasound results to my work. I went through them with a fine tooth comb. I can honestly say I can’t remember ever being so angry in my life. I had asked 2 highly eminent physicians whether there was ANY possibility there was something else wrong with me other than the cancer. I had asked BOTH of them if there was anything wrong with my ovaries, as they were hurting so bad. Both had virtually scoffed at me and made me feel like a hypochondriac.
Page 3 of results read, both ovaries are covered with small cysts. Hence the full on pain.
Page 4 of results read, Gall Bladder has several stones and outer layer is severely deteriorated. Hence the acute nausea and the shoulder pain.
Had either Doctors been within striking distance I would have hit them.
I went into the conference room at work at and got both Doctors on the phone on a conference call. They were not happy but I said it was a an emergency. I asked them both to please open my file and look at Page 3 of the ultrasound results. I then asked them both, did I not specifically ask you both if there was anything wrong with my ovaries???????. Did I not mention it to you both at least twice? You both assured me NO. Can you not read? The Oncologist sheepishly said he didn’t think it was important since he would be removing the ovaries anyway. The gynecologist just sheepishly shut up. I explained that the issue was, I thought I was going crazy with pain with no explanation.
I then referred them to page 4. Look, I said again, did I not specifically ask you both if there was possibly anything else wrong with me, unrelated to their specialty? Again you both said NO and made me feel like I was an idiot. They both mumbled about gallbladder not being in their field.
I then went on to tell them both a little story.
The story was, I am an expert in IT. You ring me and ask me to come in to look at your medical system, as things were not working properly. I came to your premises, diagnosed that your Server was old and need upgrading and you needed a software update. I gave you a quote and a time frame to fix. When I was in your server room, I did notice that your electrical cabling was frayed, but didn’t mention it because it was not my field of expertise. A week later I had updated your server and software and gave you a bill. A few days later you rang me and said the system was still not working. Ahhh I said, that would be because your cabling is faulty and needs fixing. You say to me, why didn’t you mention it? Ahhh I said, it is NOT my field of expertise. I asked them how that would make them feel. Frustrated, angry, ripped off.
I then said, given your scenario, I would have gone into major surgery, have to have taken at least 6 weeks off work, and then come out of hospital still feeling nauseous and in pain and would probably have had to have my gallbladder removed in more surgery with more costs and more time off work.
I asked if it was possible to see if I could have the gallbladder removed at the same time? The Oncologist said yes, but it would have to be with someone he was used to working with. I went to see that general surgeon the next day and he said yes the gallbladder definitely needed to come out and he scheduled it for the same day as the Hysterectomy.
I don’t think either Doctor had ever been called out so vehemently before. Bad luck, they needed to know who they were dealing with and that I WAS IN CHARGE.
So off I went to Noosa, to have a nice relaxing week with my lovely sister before the next part of the journey began. Stay tuned.