30 November 2017 Got a strange phone call from a woman claiming she was from Medibank. Said she had seen I'd had a prostate biopsy done on 1 November 2017 and was after more details, or something. I asked what this was all about, it just seemed too confusing. It made me feel very vulnerable/exposed that a stranger was ringing me up and talking about my medical situation. She said they had resource material, mentioning their booklet was written by a staff member who had been through the issue himself. I just didn't want to be in this conversation and told her I was very uneasy about a total stranger ringing me and discussing this. I asked if they had a PDF file of the information and if so it would be better if they just sent that. I gave her my email address and she said she'd send it right away.   I've kept my situation pretty quiet mentioning it to only two people I know. In Adelaide it was obvious that I wasn't staying at the Cancer Council lodge for a holiday so two Darwin people who were there knew but I don't really know them or associate with their social circles.  My GP knows, of course. My specialist, and presumeably his staff, as well. But for someone to ring up out of the blue and say they have access to my medical records is unnerving. So far today her email hasn't come. The other thing today was that I got a reply to my email to the bloke in the support group. He gave a phone number so I called. There was no reply but later he rang back and suggested meeting up. I had to go into Darwin for some official paperwork signing so suggested we could do it then. Since I was travelling anyway my suggestion was a place of his choice near the suburb where he lived. He insisted on a cafe in the Mall in the City at 10:00AM. That gave me more than enough time to get my business done and then be at the Cafe.     1 December 2017 Today I was up my usual early time of 5:30AM and got my home jobs done and out of the way. Had to go into town to deal with some bureaucratic paperwork so I was also going to meet up with a bloke from the prostate cancer support group. It was to more or less get a feel around for what was available and what was involved. Drove in as far as Palmerston, parked the car and caught a bus the rest of the way into the city. With a seniors card it doesn't cost anything, and no worries about having to park the car.   The legal stuff only took about 10 minutes so I had a lot of time to fill in before the rendezvous. I kept my mind open about how the meeting would go, no preconceptions, since I still don't really know where I want to go with this. I often wonder whether I might be in a "calm before the storm" type of situation. It would be good to know what's out there that I might be able to 'hold on to' if need be.   There's also mixed feelings about the length of time before I see the specialist for the results of the PET scan. It's tempting to just go and see my GP as he usually gets a copy of all the tests. There's a lot of thoughts flowing through my mind and  no real opportunity to off load some of it. I do feel the need to talk to someone, but at the same time don't want to suddenly unburden myself on some poor sucker that might happen to get stuck with me. Don't think anyone wants to be lumbered with me crying on their shoulder. Not sure where the answer lies, if there even is an answer.   Anyhow, there was no need to worry about the way the meeting might work out. I got there a bit more than 5 minutes early as for me it was difficult to fill in the extra time in the city, nothing much interests me there. I settled down to a veggie and fruit  juice and whiled away the minutes, the quarter hour, the half hour, and finally the three quarters of an hour. It seems like something must have cropped up and the meeting was destined to not eventuate. A bus was leaving shortly for Palmerston, where my car was, or there was nearly another hour before the next one. A lot still needed doing before heading home so I opted for the first bus.  Despite whatever issues we might have, the 'wheels of life' roll on regardless. There's endless things that need to be done.  When finally back home I felt quite pleased with what was achieved during the day. I had to depend on myself in many different ways, as for much of my life, and it worked well. There'll always be the odd worrisome thought now and again and attempts to unravel some meaning out of what is happening. But I can deal with that. You live until you die, and that's what I'm doing now because at this stage life still goes out to the horizon and beyond. That's definitely a plus.   3 December 2017 What do you do on a rainy Sunday? The rain set in today so it was an indoor day. I decided to bite the bullet and do something about what's been on my mind a bit. Not having a will hasn't been much of an issue, there'd never been an obvious need and besides there's no one to leave things to. So I did a bit of an internet check on what's involved with getting the Public Trustee involved. That of course led to the other issue that needs attention. Namely funeral arrangements. There's never been any apparent urgency before for that either but now it just seems like a good idea. Sort of a backup plan. A number of options are available for location in a cemetery, although it did make me wonder what the criteria for that should be. I wonder if a trip out there to actually see and select a location might be a good idea. It's not that I'm really expecting to be needing a plot any time soon, but things happen. There's no saying you won't end up with the proverbial run-over-by-bus scenario while you're focussing on something else further down the track. Looking up about headstones  online wasn't so bad but checking on coffins made me feel a bit uneasy. Maybe I'll look up that again in more detail some time later. My parents did the prepaid thing well before they went. And I'm sure many others do it as well. Nothing like being organised. I guess it's the last bit of control we can exercise, I always feel better when I'm in control of my circumstances, even if only a bit. ... View more

24 November 2017 Even with being in a motel in Adelaide I was up quite early this morning as is usual at home. It was light already reminding me that twilight was quite long during summer down south. Checked out the weather on the internet, both for Adelaide and for home.  My plans were to wander into town, check out the hospital and where I was to report to, and then look around the shops and wherever else took my fancy. The hospital was on the opposite side of the city, probably only about 3 kms at most. However, after taking a few turns I couldn't remember the names of the streets I should have been on and came out on West Terrace a lot further south than expected. No harm with the extra walking, the weather was still holding out.   The hospital was huge. There were signs everywhere to everything but it seemed more confusing than helpful. While trying to get oriented an older gentleman approached and asked if I needed help. They have volunteers who wander around picking  out lost strays and guiding them in the right direction. He was very helpful although I managed to work out where to go before he was able to with his guide map. I had to go to the second floor. He told me there were no stairs for the public, only for the staff, so would need to take a lift. Ground floor was level 3, and my floor was below ground. I made my way through to the reception desk of the Nuclear Department and verified this was the area to go to, no need to turn up early.   Wandering back to town I headed into Rundall Mall. It was pretty crowded but I found a Chinese food place in the Myer Centre and ordered my usual. It was only around 11:00 AM so there were plenty of tables free. Afterwards got a veggie juice and headed out into the thronging crowds. Wasn't long before anything I wanted didn't seem more important than getting away from the crowds and noise. Walked to North Terrace and sat for a while on a park bench. Some rain set in but didn't last long. There was only a couple of hours to go so no point heading back to Flinders Lodge. After the rain I made for the hospital where I found a seat in a quiet area and relaxed. Tried to doze a little as I hadn't slept well but there were too many people clip-clopping down the corridor nearby.   Finally I went down to the Nuclear Department and surrendered myself. They actually started on me a little early. A nurse sat me down in a large chair and tried to set up a needle in my arm that would be used to pump the "glow juice" into me. She couldn't find a vein after a few probes so apologised and tried with the other arm. On that one she well and truely struck 'paydirt'. Blood spurted out over my arm and the cloth she had draped over the arm of the chair. Again apologising she mopped it up quickly using quite a lot of cotton wool, the only suitable thing at hand. She attached a canula with saline solution and pumped to make sure the needle was still in the right place.   With everything now in order she left saying she'd be back soon. A different person turned up wheeling some equipment. I said "That looks deadly!" She (forgotten her name) said it was a shield for the radiation. I quickly came back with: "Where's mine?" "You don't get one." "That's not fair, it's discrimination. Where can I complain?" She went on that because of constantly working with it she needs the protection. I assume that she realised I wasn't being serious but told her that anyway and that with all the prods and pokes and jabs I keep getting I was entitled to a bit of a stir. Soon she had me connected up and the 'glow juice' was flowing into my veins. This was to take about 50 minutes to spread itself through the body so I laid back in the chair and relaxed. When she came back to disconnect me she said I should go to the toilet (for a leak) and then it was off to the "machine". So I complied and then I was led into a large room with a very impressive looking huge 'doughnut' type of machine, the CT/PET scanner. I emptied out all my pockets and mentioned that I didn't know if my trousers zipper was metal or all plastic. She said it didn't matter. Laid out on the 'conveyor belt/table' I warned her that I was claustrophobic and wanted something to cover my eyes. She asked me to put my arms up past my head,  folded a small towel and put it over my eyes. Soon I felt myself being fed into the doughnut and with a few little jolts back and forth it all went still. The machine made a humming type noise nowhere near the level of an MRI scanner. To pass the time I counted my breaths. I've done that with MRIs as well and it seems to work well.  There's at least 3 seconds to a steady breath, usually more. Got to about 600 and then felt myself being retrieved from the machine.   I was told I could go now. At the reception desk they had already filled out my fitness to travel document, handed it to me, and I was on my way. The whole process, which I was informed would take 2 to 3 hours had taken 1.5 hours, still time to get the Cancer Council bus back to Flinders Lodge. That gave me time to race into the office and get the receptionist to fax the hospital's certification that I'd had the treatment and was fit to travel to Darwin. She also rang Darwin as it was late in the day I didn't know if they would process the travel warrant over the weekend. The receptionist told me that another bloke who was next door to me had already booked a cab to get the same plane I was going to be on. Called in on him and arranged to travel to the airport with him. We ended up having a long chat. He was also seeing my Urologist and had heard a lot of good comments about him. He also said he doesn't do 'robotic' surgery, he was an 'open up and get your hands inside' operator.   I found myself opening up a bit with him and, I guess, outlining the way I was dealing with the issue. Mine was a bit of a 'schizophrenic approach'. Part of me  dealt with all the mechanics of getting to appointments/referrals, researching information about cancer, etc. Another part was in a sort of denial telling the other part "Shut up, don't want to know about it". He seemed to be questioning why he was in Adelaide at all going through a PET scan. I said it was important to check the extent of the cancer and the PET scan was the most accurate way to do it. He wasn't sure he wanted to know. My response to that was that if they're going to be cutting me up I wanted to be sure they were getting everything out that needed to be got out. He also seemed concerned that his employer was suggesting that he retire from work and it was obvious he wasn't ready for that.   25 November 2017 Just got home from Adelaide this afternoon. I got up quite early and packed up my gear ready to go. Taxi was due 6:45 AM. Had all my gear down by the office door well before then went up to leave a note to a friend from the NT who was there accompanying his wife who'd just had surgery for liver cancer. The taxi trip to the airport only cost $26.60, quite a difference when you travel on a Saturday morning before peak traffic time.   My lift from the airport to home wanted to go to the Bushfires Christmas get together  so I agreed to go along as well. I had originally wanted to go myself but didn't think I'd be getting back from Adelaide in time. It was good anyway, we got there too late for the speeches but in time for the food - perfect timing. Caught up with a number of other volunteer colleagues. Always the question, "How ya going?", always the answer "Really good". Still have no intention of having it generally known what I have. Besides, I do feel really good. Maybe a tad over 21 years old, but still good. Finally I got dropped off at home mid afternoon. Good to be back.   27 November 2017 Although I'm quite busy at home it seems I should be doing more about my issues. The PET scan has been done, what's next? I rang the urologist's office and found out they've booked me in for an appointment on 12 December, almost 3 weeks away. Seems to be a long time to wait on something as significant as this. I don't think there's anxiety setting in, I think. But I'm still not sure that I know what I actually think, if you know what I mean. It's made me consider making contact with the support group the Cancer Council nurse  recommended. It would be good to know that there was 'something' there if needed. I've sent an initial email to one of the blokes and hope to find out how the support group works.   29 November 2017 Late afternoon rang my neighbour who is undergoing the radiation treatment for breast cancer. She only has 4 more treatments to go. That's good because the soreness and burns are beginning to take their toll. Giving her some support in this helps me keep my mind off my issues to some extent, and to also keep it in perspecrive. I'm in that situation of knowing but not knowing. I know that I have it, just don't know how far it's spread. Waiting for the results of the PET scan is starting to gnaw away at me a bit. But to be able to listen to and support someone else at a time like this is probably more beneficial to me than it is to the other person. And she does listen to me as well. I guess the picture in my mind is of two old toppling trees in the forest fallen against each other but managing to hold each other upright. ... View more

Well, got the PET scan done, and didn't have to go to Adelaide for it. They have their own "doughnut" here. Yesterday was result time. The doctor was very nice. Said she was the respiratory specialist's off sider and was tasked with doing all the research on my case. She knew EVERYTHING about me and was pleased to finally meet the person. I didn't know what to make of that as it came out so fast. Felt a bit of an anxious twinge and got worried there was a **bleep** developing in my 'denial armour'.   The biopsy done during the bronchoscopy showed it was cancer. I think the doctor said adenocarcinoma but a bit hard to remember now as there was a fair bit running through my mind. The PET scan didn't pick up anything outside the lungs. She said there was going to be a medical team helping me through this. They needed to do pulmonary function tests as well as a CT brain scan. That last one puzzled me. Jokingly said you won't find much there, and asked why it was needed. Apparently the PET scans don't cover that area so the extra scan it just to make sure.   The specialist came in briefly. He seemed a bit put out when I said I preferred no chemo. He went into a bit of a ramble about how it was different now with different drugs which don't have the old bad after affects. Still said I'd prefer surgery but of course it was still early so time yet to work it all out. That would mean going to Adelaide (Melbourne was another option but I said Adelaide).  When I chipped in that if my GP hadn't played it down three years ago this could have all been done back then. He immediately jumped in saying nothing would have been picked up back then.  The same persistent cough has been there all this time but he said there would have been something different causing it then (sounded a lot like my GP).  The specialist didn't seem to like me making choices and having opinions. From his grumblings I got the impression he wanted me to take a back seat and accept whatever was decided for me.   Soon it was just the specialist's offsider and me. She was ringing around trying to get the lung and brain tests organised ASAP. So that is now booked in for next week. Time spent in Adelaide would be about two weeks. Then about six weeks of recovery unable to do any hard work.   It's never a good time of year to be laid up. So many things needing doing. You try to live your life working through certain  plans but then distractions come along trying to push you off course. But, it is what it is. About the only certain thing in life is that there is no certainty. ... View more

It's good having a dream that takes you through your current issues and promises a brighter future. It makes the hurdles look not so bad. I've done more first aid courses than I care to remember. Seen plenty of changes. But one thing that's been constant in the courses: 'if you don't take care of yourself you won't be able to take care of anyone else'. It makes a lot of sense. ... View more

Thanks Budgie, that's certainly true. Had a bout of cancer a number of years back. Settling into the current situation I've begun to look at how things went before (obviously well) That time I wrote up a bit of a journal detailing what happened, how I felt, how I was coping, etc. It's quite long, but it might be okay to put it in the blog section here. Someone might find it interesting how things affect people and how some respond. Or else, on nights they're having trouble sleeping, help get them to sleep, LOL. ... View more

Good news, the temporary phone link has just got restored and the hospital managed to get through to say they'd booked me in for a PET scan next week. The biopsy results were probably not in my favour.  So, not being able to contact me, that'll be why they set up the PET scan. After that I guess we'll be looking at how to go forward.   It's still only the beginning but I plan to be tough as long as I can. It's all you can do. And if I'm still in denial, that's OK too. There's so much needing doing, I dread the thought of being incapacitated. ... View more

@sch The whole telephone issue is quite involved and not really a focus of this forum. But briefly, there is WiFi even though slow at times. For voice mobile you generally have to drive off to a higher hill. Sometimes I get help from a friend, providing her service isn't off line as well.   Telstra is bound by the Universal Service Guarantee, Customer Service Guarantee and the Priority Assistance Guarantee by legislation but it appears it's not enforced so they ignore it.   I first reported the fault (online) 12 January, TIO gave Telstra til 17 February to resolve the problem (Priority Assistance states it must be fixed in 48 hours). Late last week (26/2) TIO said Telstra would send someone out to report back on the fault (there have already been two visits/reports on it). And so it keeps going around in circles. But the whole Telstra story is quite big and off topic here.   But back on topic, things are okay, still keeping very busy. Although the other night it got a bit iffy with the breathing. Wanted to drive to hospital but then thought that might be more dangerous than riding it out at home. By morning things settled down and the feeling of panic subsided. A visit from a couple of friends later in the day perked me up. It's like riding a yoyo. ... View more

Thanks sch. But as I mentioned before, Telstra is making sure I don't have any possibility of ringing anyone, or of anyone ringing me. Budgie, I've been recommended a good GP now. Bit of a further drive, but hopefully an improvement. Thanks. ... View more

Thanks for your supportive comments Dee58 and Budgie. Finding this site has certainly helped me, don't feel so much backed into a corner. Reading other posts helps as well.   Alternative GP's aren't all that far away. I've lived much of my life in remote areas, one time where a doctor came once a fortnight for two days to a clinic which was about 100 kms away from where I lived. However, there were nursing staff there all the time. For me, moving into a rural area was like a move into the 'big smoke', LOL.   Don't really feel inclined to go back to the same doctor. But shopping around for an alternative is a bit daunting. The thing is, I'm now really in the hands of the specialists. A GP wouldn't have any significant input any more. And anyway, you never know what sort of a GP you might end up with again. Just have to concentrate on getting the "What if's" out of my head. It is what it is and I have to deal with that. ... View more