9 November 2017

Thursday 9 November 2017 wasn't an ordinary day. Ever since getting a redundancy and deciding it was time to quit being a wage slave not many days can be described as particularly ordinary even though none were anything particularly special either. But this day I had an appointment to see a specialist to get the results of a prostate biopsy from the week before. Had to drive into Darwin so got something for breakfast on the way. Surprisingly there wasn't any long wait to see the specialist, probably got shown in a minute or two earlier than the appointment time. Now that is unusual. As I sat down he beamed a broad smile at me and asked "How are you feeling?" In previous encounters with him he had been fairly off hand, even abrupt at times. In hospital after the biopsy he nearly bit my head off for making a comment. So although my immediate reply to his smiling question was "Really good", I had a sense now that something was different and added "Of course that might change depending on what you have to tell me." He didn't beat around the bush, just straight out said "Well, I've got bad news."

 

They say that at times like this the first reaction is to hide behind some sort of notion that he's talking about someone other than yourself. I don't think that's what happened to me. This whole thing with elevated PSA test results had been going on for years and a couple of earlier biopsies (including "digital examinations") and an MRI scan had, at worst, proved inconclusive. I'd already googled the hell out of prostate cancer years ago. Now the specialist was explaining how I in fact had some non-aggressive and some aggressive prostate cancers. Doing nothing was not an option. I didn't stop to think out a response but just said "I guess I'm on that road now". (The word "road" must have come from all my earlier reading about cancer.) Then I added "Well, it's not over 'til the fat lady sings, and I can't see her getting up onto the stage just yet." He had a surprised expression, had perhaps been expecting a more negative reaction.

 

We got down to the nitty-gritty of where the cancers were and what options were available. The discussion was very much two sided. I would feed back information he gave me as I understood it so he could either confirm  or correct it. He suggested that I'd need a PET scan which would show the full extent of the cancer and whether or where it had spread. The MRI a couple of months back (my second with this issue) was done more to pinpoint target areas for the following biopsy. It had not indicated any suspect areas in the lymph nodes, but the PET scan would be more accurate and conclusive. This had to be done in Adelaide or Brisbane. I opted for Adelaide so he said that would be arranged for me along with transport and accommodation. I was told a cancer nurse  would contact me to get the show on the road.

 

Going home was of course quite ordinary, with my customary calling into Bunnings and a supermarket on the way. It had now, again become a day like any other.

 

10 November 2017

I've been busy getting some excavation work done on my block.  There was a lot of heavy work associated with it which kept me busy. The cancer nurse rang and left a message to call. When I did she got my email address but otherwise not many words were exchanged. I had to wait for an email with further information. More words might not have been of much use anyway. I didn't really know what to say anymore, nor could I think of any questions.

 

Rang the hospital travel number I was given and got onto the bloke running it. He wasn't exactly bubbling over with information, none of my 'paperwork' had been passed on to him yet. I explained that living out bush  I like to make contact early so that things can be organised with no last minute issues or panic. That apparently was the wrong thing to say. He said he'd email out the documents when the approvals were done.

 

An email arrived from the cancer nurse with general information about PET scans. Later there was an email from the hospital travel desk with a booking confirmation for Flinders Lodge in Adelaide. I guessed that he'd be sending plane booking information later. On the internet I checked on the Royal Adelaide Hospital and Flinders Lodge locations. Turns out that Flinders Lodge is Cancer Council of SA. Can't keep away from the "C" word for long. They're on opposite sides of the city but within easy walking distance of each other.

 

Having worked about 28 years out bush moving in closer to Darwin meant I hardly knew anyone. I'd become a member of the volunteer bushfire brigade and been out to a lot of fires. But I wasn't a drinker so didn't really get into socialising. I was also a member of a native plant society but there wasn't much socialising going on there either. I wouldn't call myself "antisocial" though,  but I don't do well in crowds either. I can be quite happy with my own company, which helps most of the time.  But not when you want to leave hospital and they insist that you can only go with someone else driving and who will stay with you the first night. Telling them that's not going to happen never gets a good reaction, but I tell them that's the reality so deal with it.

 

The only person I've told about my diagnosis is a neighbour a couple of doors up (couple of 20 acre rural blocks up) from me. She has recently had a breast cancer removed and is currently undergoing radiation treatment.  We'd been discussing her treatment as it had started before my diagnosis.  When I got my diagnosis I eventually mentioned it to her. I guess then we leaned a bit on each other, although she has lots of family and a big circle of friends here, and is much more the socialising type than I am.

 

When mentioning the trip to Adelaide for the PET scan she offered to drive me in to the airport, depending on the time of the flight. She was driving to Darwin Royal daily for her radiation treatment and could drop me off on the way. So when I finally got the flight details turns out there was plenty of time to drop me off and get to her appointment as well.

 

I don't want to be a 'grumble-bum'. That might come later, who knows, but at this point I want it to feel all rosey.  I do sense a bit of a change in my behaviour. Although having nearly always been one to come out with jokes and quick quips, it seems I'm 'pushing' it a bit more now. I don't let any opportunity pass for making a joke out of anything. Not sure if this is an attempt to try and repress any negative feelings, or am I trying to over analyse myself? But still, I seem to get a mostly good reception to my attempts at comic behaviour so probably it doesn't matter. And anyway, if anyone doesn't like my sense of humour, then 'problem belong them'.

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mensana
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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.

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mensana
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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.

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mensana
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12 December 2017

Up until today the past couple of weeks have been a bit up in the air, or sort of on hold. It was difficult to apply myself to what needed to be done or to the things I wanted to get done. I'd start off each day with the best intentions but soon run short of energy and resolve. The high heat and humidity probably hasn't been a help, made it easier to taper off on the efforts. But there was always this sense of not knowing the full facts, not knowing exactly where everything was going. The PET scan in Adelaide was back in November but the results were somewhere out there in the ether. Appointment with the specialist seemed to be too far out into the future. On the one hand there was the feeling that the test results maybe were good and there was no urgency with a follow up. Or, could there be an indifference about it all as lots of people get cancer all the time, just another day in the life of a surgeon.

 

The feeling was like being suspended, just left dangling, unable to reach forward. Just a feeling of powerlessness or of the tiredness that seems to keep overwhelming me. Maintaining constant positivity gets a bit daunting at times. I tell myself that it is just my impatience rather than delay that is the problem. But emotions still tended to yo-yo along from day to day.

 

Today, however, was the day for the appointment with the specialist to find out the results of the PET scan so I headed into Darwin Private Hospital early in the day. Even though fiddling around with minor jobs at home so that I wouldn't be too early and end up waiting ages at the hospital I still got there well before the appointment. Of course bear in mind that timing can be a bit tricky when you're out in the rural area as you don't know whether traffic is going to hold you up or allow you a fast run through. I met the receptionist's enquiring look with "I'm the 9:45AM entertainment." There were two behind the desk, one of them came back with "That's a different way of looking at it. You're going to be entertaining us?" I just smiled "Always, my aim is to please."

 

The specialist started off with the usual "How are you feeling today?" This time I came straight out with "That depends on what you tell me. Ask me again just before I leave." Then he just said that it was good news. The cancer looked to be confined to the prostate, no indication it had spread any further. We got into a discussion of what the options were. He spoke about surgery on the one hand and radiation with hormone therapy on the other. I told him I'd googled the hell out of prostate cancer but only the reliable sites like the American cancer organisations and reputable clinics as well as Australian ones so I had given the matter a lot of consideration. My preference was for surgery. The cancer was in a discrete area and should be easily excised. The problem with radiation is the chance of peripheral, or 'collateral', damage and the long term need for hormone therapy with its side effects. If the cancer had spread a bit more then the situation might be different. He told me that there were also risks and side effects with surgery such as some incontinence and erectile dysfunction.

 

For me there are three focal points that I try to use to guide me in life:

Get the facts;

Get real;

Deal with it.

I had done my best with getting all the facts short of a 6 year university course specialising on the subject. I feel my grasp of my situation is now realistic. I had given it deep consideration and it was time make my judgement and deal with this situation.

 

I wanted to know the nitty gritty of the process. Firstly was the question of when the procedure could be done, how long  the hospital stay would be, and how long I'd be laid up at home afterwards before I could do physical work. I have a rural block and a lot of the work needed there is fairly heavy, especially during the dry season. There are no "light duties" that deal with everything needing doing on a rural block. Ideally for me the procedure should be done and recovery confined to the wet season. His information was that the stay in hospital would be about 4 days. The tube into the bladder would be in for about a fortnight. And the overall period of being laid up before being able to work would be 6 to 8 weeks.

 

With that all settled we went out to the reception desk to sort out a date. The first available was 2nd of January, then 10th, then ..... I jumped in on the earliest date saying that I wanted the least amount of time to be thinking about it. It then dawned on me that it was only 3 weeks off which gave me a bit of a mental jolt. But I stuck with it as it has to happen sometime. I paid the bill and walked off with a bundle of paperwork under my arm and a feeling of time running out.

 

Heading back I called into Thorak Cemetery for another session of dealing with reality. At the office I said to the woman at the desk "I'm looking for a bit of real estate". She was amused by my approach to the subject. She outlined the types of plots that were available and in which sections of the cemetery. We also got into prices, not really cheap. I opted for having a small headstone rather than a plaque or one of the larger monument style memorials. She went out with me to look over the sites as she had a list of the plots already reserved and what was still available. I said she was like a real estate agent selling a block. We laughed over that. I asked the question that had played on my mind a bit, "What's the criteria for an ideal funeral plot?" She just said "Whatever you feel comfortable with".

 

We sat out in the shade of trees near a new section where there was a burial in progress. It was for a young indigenous man killed in a car accident. I knew some of the family but didn't recognise any of the people there. I checked the list of taken plots and worked out the position of what was still available. The site was quite nice. Next to a row of trees which were going to grow a lot larger. There would be shade from the middle of the day right through the afternoon. But it would get morning sun quite early. Despite the woman saying that I didn't have to make a decision right away I decided on the plot next to the one for today's funeral. I then told her about my situation and said if the procedure next month goes "pear-shaped" then I want everything in place and sorted.

 

Following our site inspection we walked back to the office where I filled out the documentation for the site. I've never had an address with that high a number before. Next will be the payment but they'll send me an invoice first. Of course that isn't the end of the story. There's also the actual funeral arrangements and organising the headstone yet to be done.

 

After I got home I rang the Public Trustee's office and made an appointment to get a will drawn up. That won't happen until the 20th December, just over a week away. All this funeral business is very involved and I can understand why people (some people anyway) like to get it all organised before hand. But I'm well into the process now and it feels good to have achieved this much.

 

14 December 2017

Today I caught up with the neighbour who'd given me the lift to the airport for my flight to Adelaide for the PET scan. She's finished her radiation therapy and is now doing the hormone therapy. I talked about my progress with funeral arrangements as she had already done hers some time ago. It feels good to have someone that I can speak to about all this business, someone who knows and has "been there". She could relate to all my doubts, contradictory emotions, uncertainties, and all the other feelings that were quite "normal" in the circumstances.

 

While there's no reason to expect a negative outcome I asked her if it did go "pear-shaped" for any reason could she release my two Long-necked Turtles. Years ago they were on my place when Cane Toads turned up. I penned up the turtles in an enclosure with ponds to protect them. I feed them but they also have some "wild food" in the ponds they can also get. But long term they couldn't survive in the enclosure without extra feeding. If she opened up the enclosure the turtles could move out into my swamp and creek and take their chances in the wild as they have never stopped their hunting practices.

 

The other favour I asked for was getting a lift to the hospital, she could use my car instead of hers. That would alleviate the worry of leaving my car in the hospital car park all that time. Then she could pick me up in it afterwards and I wouldn't have that perennial argument with the hospital about driving myself home.

 

Meantime at home I'm trying to get a lot of things done before the operation as afterwards my capabilities will be limited. At the same time however, my feelings about all this are still a bit ambivalent. Despite outlook being mostly positive there's still a niggling feeling that I shouldn't worry too much about not completing things as it won't matter if the results of the procedure turn out less than expected. Do I have a responsibility to finish projects if there's a possibility someone else is going to come along with different views to mine and more or less 'bulldoze my projects into oblivion?' I'm really glad for having an early date for the procedure. Less time for errant thoughts.

 

21 December 2017

Yesterday was quite a busy day. I'd made an appointment to get a will drawn up by the Public Trustee. Having a Seniors Card means free bus travel so it was easier to drive to Humpty Doo bus interchange, park the car and travel by bus. Of course that meant getting into the city very early. So had some breakfast, a subway roll - they're healthy, and the rest of the time was filled in looking around NT General Store, an outdoor gear supply shop that I've used over the years. Eventually got to the Public Trustees office still almost a half hour early.

 

It obviously wasn't a busy day as they showed me into a meeting room early. The bloke dealing with me looked like he'd only just finished high school  a few years back. Everyone seems to be getting younger while I'm getting older. That's the impression anyway. We went through all the details and he took notes. Afterwards he said a formal document would be drawn up from the notes and I'd need to sign that. That's when I explained my situation and the operation that was going to be on 2nd January in the new year, saying that I realised it was late in the piece and the Festive Season wasn't a good time, but that it would be good to have it all sorted before the operation. I added that having the will finalised and getting a cemetery plot was part of "Plan B". My "Plan A" was getting through the operation with a few bits missing but generally okay. He said they may be able to get the will pushed through and finalised beforehand. If not, then if it came to it there would be a "Plan C". They would take the notes which were signed by me and witnessed to the Supreme Court and get it ruled as valid as it was clear what my intent was.

 

With that all set up I then headed back to the buses to get to the hospital, one bus to Casuarina then another to the hospital. It was nice to be sitting back in a bus rather than behind the steering wheel of a car and have the worry of getting parking space.  But the compromise is having to fit in with a number of bus timetables. Went into the patient travel desk to put in claim for the taxi fare from Adelaide airport to Flinders Lodge. Staff first said that I couldn't make a claim without having the travel clearance signed by the hospital in Adelaide. Told them it was faxed through by Flinders Lodge so I could get the return air travel arranged by Darwin. Then another woman butted in saying that isn't what happens, that nothing gets sent to them. I disputed that saying it was what I was instructed to do and it was what I'd done from Adelaide. She then arrogantly said I was mistaken and that wasn't what I'd been told to do when I picked up the travel warrant from their office. I said she had no idea of what I was told as I'd spoken with bloke in charge on the phone and he'd emailed the papers out to me. She said he was there to back her up but when she turned to him he walked away without saying anything. She continued to loud mouth me but meantime another of the staff there found the papers that had been faxed to them and filled out the claim form. I was really upset by this time and asked the woman for her name as I was going to put in a complaint about her. She said "Ann" first and then added "Smith". From the expressions on the other staffers faces I got the impression she was lying again. So I walked off with the completed claim ignoring her continuing loud mouthing at me.

 

i was really shaken up by her insolence but collected the refund and walked over to Darwin Private Hospital to hand in the admission papers for the operation. That went smoothly and soon I was back at the bus stop to get back to Casuarina. From there I got the bus around to Winnelie via Berrimah. From the Winnelie Post Office I walked to the stone masons yard to organise a head stone for the cemetery plot. A bit of a long walk out in the midday sun but I got there just as they were leaving for their Christmas party. The premises were shut and they didn't have the key to get back in side. So we discussed the matter outside and they said they'd email me a quote. Not looking forward to the long walk back to the bus stop I asked if they could give me a lift on their way. It was a bit of a wait for the Palmerston bus but at least it was in shade. At Palmerston I had time to get a bottle of drink before catching the bus to Humpty Doo, via Noonamah.

 

It was quite a long day but I really felt I'd accomplished a lot, beside the marathon bus travel. Somehow getting all the funeral arrangements sorted gives me a feeling of having some control in what is mostly a situation beyond my control. It's not just something happening to me but me also having direct input into how it happens. There's some sort of consolation in that and I'll take whatever I can get.

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mensana
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27 December 2017

Tomorrow is the day for the will signing. I'm sensing, however,  that while being busy with organising everything prior to the operation helps me feel I'm still in control, when it's all done/completed there's going to be nothing more to do and my sense of control might come tumbling down around me. It's a scary thought as when I got home there was a phone message to ring the surgeons office. They informed me that the anaesthetist had 'pulled the pin' and wouldn't be doing the job. They've organised another one but it's delaying the operation for another week. I'd deliberately gone for the earliest date so that there would be less time to think about it so the news came as a blow. Now I've got another week to 'stew'. While managing to keep control most of the time my mind does often wander into thoughts I'd rather not have. One night while dozing off a bizarre dream developed where I, along with some unknown others, had to go to a grave and open up a coffin. The coffin was up on some sort of framework/legs. As we started to try to open it the coffin slipped to my side and the gooey insides spilled. I woke up suddenly with my heart racing. I can't understand where my mind dug up that sort of a scenario from. I've got to give up watching these gory movies where they open up graves or handle human remains.

 

One thing about the delay is that I can get more done before going in. I've been stockpiling frozen meals to make preparing food easier, just pushing a few microwave buttons. Not my preferred way of eating but it will do as a temporary measure. And I guess a positive aspect of that is that I'm preparing for 'life after the operation'. Deep down I'm not all doom and gloom, despite the odd freaky dream.

 

28 December 2017

Drove to Humpty Doo to pick up the newspaper and continued on into town. The will signing was fairly quick, not a lot to read. On the way back home I called in to the stone masons and had a look at some of their work. They also had a storage area at Yarrawonga so I went there as well.

 

While waiting for the stone mason to turn up a group of Aboriginals turned up. They were coming from a bush camp nearby. One of them recognised me, he's an 'extended part' of the family that adopted me some 30 years ago, a nephew.  Took me a bit longer to remember his name. He gave me the latest news on family movements and of someone recently deceased. This raised another issue for me, uncertainty about whether I should tell him about my condition or just leave it go. Word would spread fast, but I didn't feel ready for that. In my mind I questioned whether that was fair to the family, either telling them or not telling. It was easier to stick with my "I feel fine" line, because I actually do feel fine. And if it all blows over, ie Plan A, then it won't matter. Not saying anything was the right thing to do.

 

What I liked at the stone mason's was their Acacia Bluestone. It's dark and natural which I prefer. However what they were working on was a bit pointed at the top. What I want needs to be more rounded rather than pointed. The inscription would be on a brass plaque recessed into the stone. Otherwise the stone would be completely natural. I've already worked out pretty much what the inscription will be, apart from the "end date".

 

Once the headstone is sorted there's only the funeral itself left to organise. I'm inclined to leave that to the executor as I've left instructions in the will for a simple non-religious funeral. I don't know whether I want to go through the process of picking out a coffin. But we'll see, can change my mind later (if there's time). Meantime, still a week and a half to go before the operation. Not happy with that delay.

 

 

6 January 2018

Not only are we through into the new year but now getting close to time for the operation. I've been flat out with trying to have the cemetery and headstone arrangements finalised.  There's been no end of running around. I have also organised a new passport. Not quite sure if it might come in handy if I have to get through the Pearly Gates. But it's kept me really busy as there's still all the stuff I need to get done at home before I'm  incapacitated. One thing though, while making life a bit hectic it keeps reinforcing in me the feeling of still having control. I think that feeling of empowerment is what's making this situation easier to deal with, and I feel good about that. Plan A is still my aim, but Plan B is pretty well sorted if the need arises. Only three days to go, but who's counting?

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mensana
Contributor

9 January 2018

Well, today is the day. Haven't slept well the previous nights but last night was a bit better. Exhaustion maybe. Even though going to bed fairly late I  still wake around three-ish and not be able to sleep again. So I've spent a lot of time in the early hours going through my old things. It's surprising what I've held onto over the years, especially as how I've lived in some rough places and moved about a bit. Found writings I done back in my teens when I lived in Darwin, lot of subsequent stuff too. There was a lot of data from scientific publications on archaeology, anthropology, linguistics, natural history, etc. These are subjects that occupied a lot of my time over the years. A lot of work things as well, not really relevant now. So it was an opportunity to clear much of that out. My fire pile burned well during the break in the monsoon late in the afternoon.

 

Although not being a hard core "Bower Bird", I do tend to accumulate a lot of things that I might get around to fixing up or might come in useful later on. So a lot of that went out in the garbage. Would have been good if I'd started this sort of thing a few years back which would have enabled me to devote more time to going through everything. Guess that's not how life works though.

 

This morning I got up around my usual time, 4:55AM and set about getting some breakfast. Normally I exercise first thing, work around the place til mid or late morning. Depending on what I'm doing it can stretch out to 1:00PM. Then I have breakfast. One of the nurses from the Cancer Council advised me against fasting for too long. Since the fast was to start from 6:00AM and I normally have breakfast around the time due for admission to the hospital I broke with the norm and had breakfast about 5:30AM. Made my stomach feel a bit unusual. Doesn't matter though, it's going to be an unusual day.

 

I've got a lift coming around at about 10:00AM. The only way I can get in without driving myself. Probably going to be there an hour or so early, doesn't matter. Getting together a list of things to take for a stay of 4 days was interesting, going to need a large suitcase. That'll scare them in the hospital seeing me turn up looking to be prepared for a month's stay. Although my computer is a laptop it's not the compact size. But I'll need it to fill in the time. There's a lot of work that needs catching up on and watching TV isn't an interesting way to fill in time in my opinion.

 

So, I'm still looking forward to a bright future, Plan A, and am working over in my mind what needs to be done when I'm back at home and fit enough to get back into work. And mowing is going to be high on the agenda with all this rain we're getting plus spraying weeds.

 

10 January 2018

D Day plus one! And I'm still in the land of the living. With my early lift I was at the hospital and hour before admission time, which was at noon. Not being able to have a bite to eat or drink in the meantime I just went in and admitted myself. My weak attempt at humour by saying that I was looking for a room for four nights just got a puzzled look in return. Anyway. I did all the paperwork and was sent upstairs. More paperwork and then it was the waiting room. The anaesthetist called me into a tiny little room where he quizzed  me. I said to him that my doctor's receptionist called him a "cool guy" and asked what she might have meant by that. He was amused but said he had no idea.

 

Soon I was back in the waiting room. More people turned up but they ended up disappearing with me still there. Finally another nurse called me into another tiny room where after the usual quizzing she told me I was one of the last on the agenda for the day. So there I was back in the waiting room with only one other bloke. The next call was when I was allotted a bed. I had made my way to the queue. A nurse pointed out a bloke on the other side of the room and said I was after him. Apparently his was a quick procedure whereas mine would take 2 hours. At this stage it was around 3:00PM.

 

It wasn't long before they came for me. The long wait with nothing to do had raised my anxiety levels. I was glad when they injected me with the happy juice. I told them it was affecting me and my anxiety was dropping fast. Then I said things were fuzzy and 'swimming'. It was a relief to not be thinking.

 

It seemed almost immediate when everything was whoosy again and I was aware of strong pain. I forced my eyes open and everything was swimming again. I caught view of a wall clock, it was before 8:00. The pain was intensifying and I was trying to talk to the nurse near me. I remember telling her that the pain level was about 8 or 9. But I also realised I was delirious and I wanted the pain stopped. I was desperately fighting the delirium. Slowly things began to stabilise a bit, though not so much pain wise. The clock ticked its way to 8:20 and I started to relax more, probably the result of the painkillers they were pumping into me. Then they wheeled me off to the wards.  Pain level was now something like 3 or 4. They didn't give me any food, only water but they did take my order for breakfast. I ordered up big. The nursing staff were very attentive to me regularly checking vitals every half hour. The readings were okay and pain level stayed low. Sleep was difficult but I must have dozed occasionally. Only the once when they came to check my vitals was I asleep. Around 2:30AM I finally self administered pain killers via the push button as pain levels were going up again. The last few hours before dawn were not too good.

 

Strangely enough I managed to eat the large breakfast, but my previous meal had been over 24 hours ago so there was plenty of space to fill in. The surgeon came by and asked how it was going. I answered that I'd had better days but was getting through it. He wanted me to get up during the day and be walking around. That surprised me a bit, considering the big gaping hole he'd put in my belly. Even sown up I couldn't imagine getting up and walking around wouldn't do some damage. He also mentioned a small gadget that you suck on that elevated a series of 3 balls. It's meant to get the lungs breathing deeply and stop losing lung capacity. He seemed quite confident that everything went really well. But that was the opinion from his point of view and not what I'd experienced. I guess I just didn't expect the after effects to be like they were.

 

I kept getting a lot of pain killers and for a while during the day things settled down. Hoping that everything is going to be upward from now.

 

 

11 January 2018

"The best made plans of mice and men!" Yesterday evening everything seemed to go pear shaped. My bowels were bloated as well as the bladder. That's how it felt anyway. I hadn't passed any gas nor had any bowel movements. Lunch had been fairly big and went down easily but it seemed there now was a problem. I told them to cancel the evening meal. It took a lot of convincing them that something was wrong and they gave me an enema which partly resolved the issue. But the bladder still felt like it was at bursting most of the time. They said it was only from the trauma of the procedure and urine was still coming out, still with blood in it. I had tried getting up but it was extremely painful. The bed was slightly U shaped and getting over the edge caused a lot of flexion and strain over the abdomen. I mentioned that a number of times but they said it's just the way the bed is. The movement caused a bit of an increase in the flow of blood from the abdominal drain. Generally though the internal bleeding wasn't problematic. Later into the evening I settled down to try and get some sleep but things were feeling worse. I'd had the air operated massage covers put around my lower legs again. This puts pulses of pressure at a steady rate along my legs which supports the blood flow to prevent clotting. But nothing seemed to be helping me with bladder still under pressure and pain in my lower back on the right side. There was no way I could sleep and didn't want to spend a long tortured night in agony. Eventually they dosed me up again with a more potent painkiller after a doctor had been to see me. As it kicked in I eventually got to sleep.

 

I woke up with a sudden sharp pain to the abdomen, it was about 4:00AM. Still awake some time later I coughed and got the same pain. That's what must have woken me the first time. Generally though, I was comfortable with no real significant pain. When they took the vitals readings were pretty normal, as they have been all the way through. I only ate half of the breakfast, it made me feel a bit bloated so I stopped eating. The surgeon came in again saying how well things were going. He recommended that I don't take the extra potent painkillers they gave me and to stick to Panadol, He said the Panadol should be  taken as a preventative rather than just as a cure for the pain. The potent painkillers apparently bind up the bowels a bit. He also stressed that I shouldn't let anyone interfere with or try to take out the catheter draining the bladder. He again said it had been a fairly drastic procedure so it was expected there would be rough periods. I said, "There were only about 12 days to go but who's counting".

 

The nurse came in and said she'd take out the abdominal drain, get me to shower and then strap the bladder drain bag to my leg to let me get around. A physio was coming around to help me get moving and assess me. The removal of the abdominal drain was easier than I'd expected but getting out of the bed was as torturous as ever. With the bladder drain bag emptied it wasn't difficult showering. They only had that lotion type of soap which I'm not used to but still managed. The nurse strapped a smaller bladder drain bag to my leg and I sat in a chair instead of going back to bed. It's a lot easier that way. The nurse had forgotten to close the valve at the bottom of the bag and it was only a while later I realised it was draining onto the floor.  She mopped everything up and then put the special long socks on me. A little while later the physio turned up. She gave me a pair of non-slip slippers. I asked for one of those walking frames just for security, adding also for practice for my old age. We only did a short walk and then checked my breathing with a stethoscope. She said everything was good but agreed the bed was a problem.  Unfortunately the bed still remains the same.

 

Things weren't too bad during the day. I took a few walks around the ward covering more distance each time. Managed to lie in for a while late morning and slept a bit. Seems I've been drinking a lot as the bladder drain bag needed to be emptied a few times. They'll put a larger bag on for the night as it'll be attached to the bed. Evening I got a stomach injection, same as yesterday, to help prevent blood clotting. With the abdomen still being a bit distended and pressure on the bladder still at an uncomfortable level they agreed to do an ultrasound scan to check if there was anything in it. Turns out it's empty so the feeling is only from the procedure and having a catheter in the system. The nurse assured me the feeling would diminish over time. It's just that it gets very uncomfortable and feels like the bladder is at bursting point at times. Went for another long walk around the ward early evening before settling in for the night. Just hoping for a better night than the previous ones.

 

13  January 2018

It's 4 days since I woke up from the operation, coming up to 8:00PM. Yesterday was an improvement on the previous 2 days. There were a couple of minor ups and downs throughout the day but the most significant appears to be if I accidentally cough. I'm taking great pains to avoid that as the sensation is that your guts are being ripped out. The pain lasts for quite a long time afterwards. One of the nurses said she could sympathise with me as she had given birth by caesarean section and had gone through a coughing fit. I went for a few walks around the ward using the stroller. But now I was mainly wheeling it as a "just-in-case" and not a support.

 

I had been leaking a bit of blood around the crutch and it was staining the pyjama pants I was wearing now instead of the hospital gown. I asked one of the nurses if there was any chance of getting them put through the wash. She said there were no laundry facilities in this ward, only in one of the other wards but there was no cross over between them. Not particularly happy with that as the only other suitable pants for wearing now were for going home and unfortunately they'd show up the blood stains much more easily.

 

Had previously cut back my meal orders to small ones although I still only ate about a half of their portions. By evening though I was managing to toss the whole lot in. But still no bowel motions after a few days. I mentioned again that I was getting a bit concerned so they spoke with one of the doctors and got me 2 little red tablets that were apperiants. Said they'd take a long while to react so probably nothing before morning. I'm still getting regular doses of Panadol and it does help. When the effects seem to wear off I start to feel down and uncomfortable with the pain coming back in the lower right side of my back. Suspect it's muscular though and maybe nothing to do with the operation. I watched telly until fairly late and turned in feeling quite tired.

 

Woke at about 3:00AM. Not really in much pain but still down. Started watching TV but slowly started feeling worse. Luckily my dose of Panadol was brought to me and I got through to morning. Problem was that morning I was dozing off but more people were circulating and keeping me awake.

 

After breakfast I started taking the socks off but couldn't double up enough to get the one on my left legs off. That's the one the bladder drain bag was attached to. So first job again was brushing teeth and afterwards shaving. Half way through the teeth job Henry Duncan came in. Bit awkward carrying on a conversation but he was only wanting to confirm all was well. I asked what time Monday I'd be leaving, he said 10:00AM.

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mensana
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13  January 2018 (Continued)

 

Finally pressed the buzzer for help with getting the sock off my left leg but the nurse was so long coming I eventually did it myself with a little bit of assistance from my right foot. There were 2 bladder drain bags in tandem, a leg one and an overnight one off the bottom of that hanging on the frame of the bed. I successfully disconnected the overnight one after blocking off the leg one, felt rather proud of my independence. Got into the shower but problem again trying to wash the middle of my back. The nurse turned up and I got her to do it. She had also got me a new hospital gown. It was good to be completely clean. So I also washed the pyjama pants in the hand basin using the soap lotion. Not a thorough job but at least pretty clean.

 

Of course problems have a bad habit of arising from unexpected sources. The hospital gown was too short and the leg bag with mix of blood and urine was mostly visible. I had no intention of doing my walks looking like that.

 

I spoke to the nurse about it and we decided to shift the attachment positions for the bag higher up. Unfortunately the adhesive pad was firmly attached to my leg hairs. When I eventually got the patch off it had more hairs on it than my legs. It took a lot of fidgeting around but higher up just wasn't working. Finally we got a tubular bandage to put around it to block the view.

 

Most of the morning has passed. The nurse had stripped my bed as there was blood on the sheets. She was going to make up the bed later as there were a few other jobs to get done. I ended up having lunch sitting in a chair and off the small bedside table after having taken a small walk. With all the activity I was feeling tired and run down a bit again plus the pain in the lower right back was coming back again. After waiting a while I pressed the buzzer again and the same nurse from a couple of days ago  turned up. Explained the situation so she brought some sheets and I helped her to make up the bed. I got into bed but the back pain became a bit worse. I got into the most comfortable position and tried to ignore the pain. Kept the area a bit warmer by putting a hand over it. That eventually worked and I may have dozed a bit.

 

Later the nurse came in to take my vitals, blood pressure was up a bit, something like 136 over 70. She brought a heat patch I put over the area of the back affected, it heated up fairly soon. Feeling quite a bit better I took off for a walk around the ward but this time without the stroller. The ward has a rail running along most of the walls. After that I settled in on the chair and had dinner there. The nurse gave me a lemon flavoured laxative drink plus a couple of the same red tablets I'd taken yesterday as still no bowel movements. The woman who came in to fill the water jug looked at the tablets and gave a name I didn't recognise. I just said I don't know what they are, adding they not for an orchestral movement but another kind of movement. She laughed as she left.

 

Generally I'm feeling a lot better, although being drugged up is probably helping. When the nurse gave me the anti coagulant injection into the belly I watched carefully this time. At home I'm going to have to do it myself. There's very few times now that I feel a strong urge to urinate or have the bladder feel like it's bursting. Still happening a bit though, with running water like when showering or teeth brushing. Biggest worry is coughing. That can come on very suddenly and is extremely painful. 10 days before the catheter comes out which still seems like a long time. Getting there though and in a much better place now than I was a couple of days back, even though not out of the woods yet.

 

14 January 2018

Last full day in hospital. I've really been spoiled. Assistance at the push of a button. Breakfast, lunch and dinner prepared for me and served to me in bed. Someone to change the bedding. People cleaning around me. And plenty of people around to interact with. Why would I want to leave?

 

Last night was a pretty good night. Late evening when the nurse came around I declined the Panadol as there was no hint of a feeling of being off that usually leads to nausea and some pain. Sat up watching TV. They'd given me the aperients again, the powder mixed in water plus 2 of the small red tablets. They didn't seem to be having any effect on me. It just seems too long a period without bowel movement as I've been eating all the time, or only one meal missed out.

 

It was about 5:30AM when I woke up feeling okay. Watched TV until breakfast time. Checking the vitals there was no significant change. I took a shower and still had a bit of trouble getting the sock off my left leg. It's more having the paraphernalia of the bladder drains getting in the way than anything else.

 

During the day I did a number of walks around the ward. I also emptied out the bladder bag myself and kept a note of the time it was done and volume for the nurse. In the evening when it came time for the anticoagulant injection I insisted on administering it myself. Not as easy as I'd expected because ot the extreme angle I was working from. But I did it. Things that have to be kept in mind is flicking the syringe with the fingernail and watching for the air bubble to move up and get expelled. Then putting the needle in vertically (when laying down) full distance before pushing in the plunger. It's recommended to not try to put the cap back over the needle in case of accidentally puncturing yourself. The whole syringe needs to go into a plastic container.

 

Late afternoon while doing my walk circuit I got to speaking with an older woman. She must have noticed me walking around previously and commented on it. After asking me about my situation I told her the story, including about my Plan A and Plan B. I explained how it gave you a great feeling of being in control and not just a pawn on a board.. She was concerned with dying and didn't want to be buried deep. She wanted the coffin set above ground level so she could get out, apparently in case of being buried alive. I said there was no chance of that these days. She also believed that the spirits of her parents and other family members were around helping her. I told her that was a great feeling to have and she should treasure it.

 

After dinner I headed off on my walk around the ward in the hope of getting some sort of bowel movement going. Ended up doing 3 laps but I still only seem to get gas. I'm getting quite concerned about it but the nursing staff less so. There's no way I can put a strain on the bowels. No doubt Henry Duncan will be in tomorrow and I'll ask him about it.

 

 

15 January 2018

Quite a busy day today was. Woke up about 4:45AM which disappointed me a bit. Had wanted to get a good nights sleep after going to bed a bit late. But anyway I was feeling pretty good. Laid in. The overnight nurse didn't come in much any of the time, seemed like I was on the minimal attention list. Probably the best place for me considering. She did take the vitals and also noticed my overnight bladder bag had hardly anything in it. Turns out that when I put it on last night I forgot to open the valve on the leg bladder bag. Of course the leg bladder bag was chockers. I raised the issue of my persistent no-bowel-movement issue and she gave me 2 of those small red tablets. However, don't know whether it was will power or those two tablets but something began to move. Ended up sitting the loo for quite a while but eventually success! Well, it felt quite an achievement after 5 days of nothing. Just after getting out of the loo the urologist came in with his entourage. I proudly told him the great news, adding that there was a little bit of blood with it. He didn't seem impressed at all and just said that was okay, a bit of blood to be expected. Asked me if I was ready to go home, I said yes. He reminded me about our next appointment and then was off.  Breakfast had been brought in so I had that and then got ready for a shower, just needed towels. After the shower I reminded the nurses I was due out at 10AM and asked what needed to be sorted out before hand. It took quite a while for them to get their act into gear and when my lift rang I said to come up to my room.

 

The first part of the procedure was to get out 11 metal staples holding my wounds together. It was the first I'd heard about having metal staples in me. The nurse doing it was apparently in training. Everything was so very carefully sterilised, even the way she had put on her gloves made sure nothing came into contact with anything. The supervising nurse was from Acacia so had a good chat with my lift. My belly was just big enough to block any view of the proceedings, probably just as well. It was only the last few staples that stung a bit which was pleasantly surprising.

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mensana
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23 January 2018

Today was the day I couldn't wait for, but at the same time gave me a certain feeling of trepidation. It's the day the catheter was to come out. The awkwardness and the pain associated with the catheter has worn me down quite a bit. Unable to sit for long without pain building up.  And laying down there didn't seem to be a position that would remain comfortable for long. There was no laying on my left side, very quickly I'd get sharp pains in the lower left abdomen. Sleeping on my right side worked some of the time but a lot of nights I'd wake up frequently and then doze off a little probably through exhaustion. I've been managing to control the urge to cough reasonably well but the occasional breakout would give me intense pains across the abdomen reminding me that I had to be more careful. I cut back a lot on the Panadol. Perhaps extra dosage might have made me feel better but I kept getting the feeling it wasn't helping me much either.

 

My spirits have been down during this time back home. The fact that the telephone was out made me feel quite isolated and vulnerable. I put in a report to Telstra online but there was no provision for saying I had a serious medical condition. On their site it said you had to ring them if that was the case. A bit hard to do with a phone that's not working. So I contacted the Telecommunications Industry Ombudsman (TIO) and put my situation to them stressing I needed to have contact with my medical team. Theirs was a standard non personal reply stating it had been passed on to Telstra and if the situation wasn't rectified in 15 days I could contact them again. I was quite appalled at their response and replied that my medical situation was current, not in a couple of weeks time.  Their second response was worse, they said they were busy and would get to my message sometime later. In the meantime if I had a medical emergency I should ring TIO. What - on a defective phone!

 

This certainly brought my stress levels to greater heights. I decided then to write a complaint to TIO about TIO handling of the situation. So, in amongst the statements I made in the complaint I also added:

 

What kind of an imbecile tells someone with a serious medical condition complaining about the phone service not working to ring up if they have a medical emergency? That's what the complaint is about, THE PHONE IS NOT WORKING! If I have a medical emergency I should be able to ring my medical team, not TIO, unless TIO does provide emergency medical assistance. But we all know the answer to that.

 

Finally a neighbour down the road who has a business line spent about 3 hours arguing with Telstra about getting something done to repair the line. They kept saying that I had to report the fault myself and she couldn't, but that they would work on her fault which was a business line. When the technician came she explained the situation to him and got him to come to my place. When he turned up he said the fault was in one of the junction boxes out along the road. he spent a few hours on it and then came back saying the box had needed maintenance years back but hadn't got it so was all corroded up. This was part of Telstra's policy of letting things in rural and remote areas run down and has been an ongoing issue here for years now.  But the line was clear so I rang up the neighbour to let her know.

 

My complaint to the TIO didn't get a response but someone from their office rang and started quizzing me. I said the phone was working no thanks to them and asked about my complaint. He said that he wasn't there to talk about that. So I told him to get someone who would and hung up.

 

With the phone working I felt relieved and less anxious. The whole episode was probably responsible for my feeling of depression after coming home. Later on I did get an email in response to my complaint to TIO. However, it was arrogant and the writer distorted and lied about the situation. But that's a story I'll be working through later.

 

I got an appointment with my GP for the Friday so he could check me over, answer a few concerns and tell me if he could remove the catheter for me. When I saw him he was pretty positive about how everything was going and said there was no need for concern. I guess the continuing discomfort and pain was getting the better of me and the issues with Telstra and TIO just exacerbated the situation. So there I was, counting down the time to when the catheter comes out and also the time when injecting myself stops.

 

So that brings me around to today again, the day of the removal of the catheter. The worry was if something went wrong during the removal. My overnight bladder sometimes had up to 1700 ml of fluid by morning. That's a lot to have to plug up and if it didn't "plug up" properly how do you manage it? For me it was an unknown that the surgeon, GP and nurses had said wasn't a likely problem.

 

So I got my lift  in to Humpty Doo and sat it out in the waiting area. When the time came I told the doctor there was a feeling of great relief that the catheter would finally be out, and great anxiety of what might follow. The other question was how much pain was involved. He was quite dismissive of my concerns saying it would be more discomfort than pain and that incontinence would be minimal if anything and temporary. He then told me about his personal experience of having kidney stones and having a tube run through his penis, through the bladder and into the kidneys, that was painful. I just said to remind me to never have kidney stones. 

 

The catheter through to the bladder had a balloon on the end to secure it in place and make a good seal. That had to be deflated. There was a short branching tube off the catheter which came to a dead end. Breaking the seal on that allowed a fluid out that the balloon had been inflated with. Then he pulled on the catheter was definitely a very uncomfortable feeling but as it was drawn out also caused a sharp burning sensation. That remained for a while after. There was a bit of seepage and I tried to work my muscles to block the urethra. Asked him for something absorbent so that I could get back home without 'wetting my pants'. He disappeared for a while and came back with the only thing he could find, a sanitary napkin. It certainly wasn't shaped for my purposes but I managed to get it into place, of sorts. He said nappies would be okay and wanted to see me in a weeks time.

 

At the supermarket I spent quite a bit of time trying to work out the best nappy for me. It's not that I could ask one of the staff for assistance, and it's not that nappies are designed to work for an adult. Eventually I settled on a smaller pack of something that seemed to have good padding. If it didn't work out I'd have a better idea and buy more of the suitable ones. I joked with my lift about wearing a sanitary napkin and my future in nappies.

 

Back at home I felt a lot better and carried my groceries from the front gate (about 100 metres) instead of getting the lift all the way to the door. Removal of the catheter had made a great difference.  After getting rid of the sanitary napkin I then had fun placing the nappy. With undies on it wasn't so difficult as they held them in place for the most part. So, now on to the next stage.

 

18 February 2018

Improvement has been steady. Still finding I'm very impatient about getting all this behind me but suspect it going to take some time yet. I started doing my one day of volunteer work  again 6th February. My GP had taken the plaster strips off my abdomen the week before and asked me to watch for infections and to monitor my temperature as that would indicate any internal infection. The removal   of the plaster meant there was a bit of chaffing from clothes and I couldn't button up my trousers.  But that soon passed. I've lost a fair bit of weight which helps. Down to around 71 kg.

 

The incontinence issue hasn't been as great a problem as I had feared. But it's still annoying when I go for a long period with no leakage and then suddenly a bit slips through. It tends to be late in the day and evening. Through much of the day there's no problem. And piddling straight is an issue also, it often comes out in all directions.

 

 Because of the constant heavy rain during January a lot of time was spent indoors. I'd get out during breaks in the weather to look around and would end up doing some weeding and picking up fallen branches and palm fronds.  I got the ride on mower repaired and did some mowing but the continuing rain makes that a bit difficult. More recently I started using the chainsaw to cut done trees and low hanging branches. It was good exercise carrying the wood to the fire pile. Also got out in the canoe a few times on the dam. So all in all I am getting a good variety of activity.

 

 

27 November 2018

There's been quite a gap there, life has gone on with a great degree of normality but 'well peppered' with the complications of issues involved with cancer. I resumed my volunteer work and the first day back my supervisor said I looked like death warmed up. I didn't elaborate on my situation. Still feel that no one else needs to know.

 

In May there was a PSA test done, result was "below detectable levels) - <0.008. That of course made me feel good. Although, after all I went through it's no more than what I'd expect. But in a way it was still early days. After going in for my test results from last week some clouds have appeared on the horizon. This showed a level of 0.008, which is a detectable amount. urologist was quick to point out that there was a margin of error in the tests so it still could be nothing as the reading was so low. But the other alternative is that some bit of cancer still remains, possibly in the 'bed of the prostate'. So now need another test in three months time.

 

This has cast a bit of a shadow over me. I know nothing is conclusive but since the previous test I was feeling very positive. The incontinence is still there but very minor. The specialist said it was the worst type to try and control. But there was a solution - surgical. They can place a band across the urethra just after the main sphincter which puts enough pressure on the urethra to prevent leakage but not to prevent urine flow when consciously forcing urination. He said it's a simple procedure requiring a small incision under the base of the penis. He gave me a pamphlet, someone else does the procedure. It's not something he does.

 

FOOTNOTE: The urologist had read the pathology test results back to front. He read the first PSA results after the operation as being the latest. Of course those showed residual detectable levels. The latest readings were actually all below detectable levels. It's remained that way ever since.

Budgie
Super Contributor

I feel for you.  The incompetence of some people really doesn't astound me anymore, simply because it appears to be everywhere, all the time.

 

Budgie 

Budgie
Super Contributor

Thank you for sharing your story with us.  I very much like your attitude.   I was living in Darwin when I was diagnosed in August 2012, then moved down to Canberra at the end of that year.  That was our fourth time living in Darwin (hubby is in Defence), but I must say, each time we went up there the heat was harder to live with.  I'm glad we moved away as I can't handle the heat anymore.

 

Budgie

mensana
Contributor

Thanks Budgie, and thanks for having the patience to read it through. It's a marathon read, but then isn't it a marathon we're all on? And that was a short one, compared to what some people are experiencing.

 

The military is a big part of Darwin, especially now with the INPEX project completed. There's also 2000 US military personel. And funnily enough, while driving into Darwin today to the hospital I passed a big military convoy heading out, probably to Mt Bundey.

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