Talk about burst bubble. My numbness and whatever might have followed it were shattered today for sure. Had the appointment with the GP today. First spent a lot of time with a nurse and she was quite good, very supportive. Left with an 'inner glow'. However, after a shorter session with the GP everything seems to be falling apart. Sort of like I'm standing on a pile of sand with the tide coming in washing away at the sides and I'm powerless to stop what's about to engulf me. The vast brooding ocean behind the tide looks so dark and ominous.   The GP gave me a wad of papers titled "Advanced Personal Plan". He wants a copy of it when it's filled out. He wants me to see a dietician and a psychologist. With regard to the psychologist, told him I was going okay but he kept insisting that I would need it. He kept saying that while I thought I was going well I was likely to make wrong decisions. In the end said I'd give it a go. The only thing is that trying to book an appointment they said the earliest was in 12 weeks. Not much help now, nor for quite a while down the track.   Back home tried to lose myself in my usual distractions. But it's not working so well. Hopefully this is just a temporary blip and I'll get past it soon. Rang the Cancer Council here in Darwin and made an appointment to see one of the counsellors tomorrow. Feel a desperate need to talk to someone, but don't know what to say. So now I just have to get through tonight. This roller coaster is making some wild swings. ... View more

  Dee58, way to go! That friend is returning to WA, heading to Kununurra end of the week. But we stay in contact because of our mutual interests.   Where I get long or strange looks I usually say "Don't send flowers yet, I'm still alive and while I'm alive I'll be living."   By the way, you asked before, the 'incompetent doctor' referred me as a public patient even though he has my medical insurance details in his records. When I raised this at the meeting with the surgeon I was told it's not an issue now as things are going through and I'll get the entitlements covered by my insurance. I've had private cover most of my life. ... View more

Thanks @Dee58, @Budgie.   Everything is out of whack. Up to now I haven't slept for 40 hours. Last night I was feeling too scared to go to bed, worried that I wouldn't sleep and just end up grinding around the day's happenings in my warped mind. I don't really want to think, so I just kept loading up the next DVD. And then it was morning. So successful was the blanking of the mind I forgot the GP appointment. Rang last minute to cancel but I had told the doctor when he previously rang me that I might not be able to make the appointment anyway.   Later I met up with a friend from WA who is also an amateur naturalist and we went bush. Spent a number of hours bashing our way through scrub and shoulder high grass, as well as sloshing through swamps. This friend doesn't know about my condition so there were no reminders. Nothing that triggered my mind to delve into unwanted thoughts. And it was good having him there as he is a bit older and less fit. Kept me from overdoing it and staying out too long.   Now back home reality may try to raise its ugly head again. Despite the forty sleepless hours, including the hours of strenuous exertion, I still don't feel tired .... yet. Apart from the relentless cough I feel healthy and fit. So, how could anything be wrong? It's all about feelings, and I feel fine.   ... View more

Well, the bomb dropped today. And I was right in the middle. Saw the surgeon and after so long being kept in the dark everything was suddenly revealed in all its grim, gorey detail. The cancer is on one of the main bronchial tubes. Doing nothing gives me about 3 to 4 years. Radiation therapy doesn't give me much more. With surgery they could remove one whole lung, or a half. The whole lung removed would put a strain on the heart. The surgery itself would be tricky and risky. The half lung would be a simpler procedure. But until they get in there nothing is certain.   The surgeon was quite blunt about it. There were three others in the room besides me, the care coordinator, surgeon's offsider and the surgeon. I looked to the other two as the surgeon delivered the blows. But they only looked back in stoney silence, and the blows kept coming. I felt very alone and vulnerable. Throwing out a few one liners didn't change anything. Certainly didn't lighten my feelings which seemed to drift between shock, fear, and confusion. The surgeon said he was putting it to me straight. I replied,' you won't mind me clinging to a bit of denial?' Would have to be done in Adelaide. Two weeks down there, then another four weeks back here.   It was a long walk back to the car, parking is murder around the hospitals here. You can't leave your car anywhere close. As I moved further from the hospital I seemed to move into a cloud of numbness. It was there all the way home. The frightening thing is what happens when the numbness goes. I don't know what to think now, don't know what I'm going to think later. I'm afraid of giving in to weakness. That weakness would make me weak, and make things harder to deal with.   The only sure thing is that this has to be dealt with. Just hope I can stay focussed, and be positive. But the days are long, and the nights are longer. Tomorrow there's another appointment with the (new) GP. Maybe by then my mind will be a bit clearer. But at the moment it feels like someone reached in, grabbed my brain and wrenched it around in my head. ... View more

@Budgie, sorry they've given you such a rough run. Generally I've been lucky, with the exception of my previous GP. It certainly shatters your faith when those sorts of things happen. So I've been sprung! Late nights. 😳 Guess I'm a bit cowardly. Scared to go to bed too early because of the greater chance of tossing and turning, both bodily and mentally. Always try to be as tired as possible before laying down. @Dee58 Actually, that's a good question, now that you've asked. Anything I've had done in recent years has been through Darwin Private Hospital. But this time the referral was to Royal Darwin Hospital. Thought it was a bit strange, but never thought to ask if I was being treated as a private or public patient. Adding that to my question list. An operation next week is definitely off but the meeting with the cardiothoracic surgeon is definitely on. So while I'm on a list, just want to make sure it's not a year long list. Do you have private health insurance? ... View more

For the past few weeks I've been whinging about a lack of information as well as a lack of action. After having done the last tests everything descended into limbo. The hospital never made any attempt to contact me, not with test results nor with any plan to develop a plan. Easter became a bit difficult and got me down as nothing was going to happen during public holidays.   Last Tuesday I bit the bullet and rang the Cancer Council number. Had a very long discussion with the nurse which was very helpful. She was based in Adelaide but gave me a number for Cancer Council in Darwin. She also suggested I immediately get in contact with my medical 'team' at the hospital and find out what is going on. So ringing the hospital they said they'd transfer me to the respiratory nurse as they couldn't let me speak directly with the medical team. The phone rang for ages and finally getting an answer machine left a message for them to ring me urgently. Unfortunately no one rang back.   The next day, Wednesday, I had my first consultation with the new GP. There was a trainee doctor present (looked old enough to still be in high school). The GP seemed to concentrate on things other than the cancer issue. Not all the information from the hospital nor my previous GP had come through. I made a comment on the irony of never having been a smoker but still being lumbered with this. The GP almost bit my head off saying I shouldn't dwell on these thoughts, that I'd end up succumbing to the "why me" syndrome and negativity. Just told him that my mental health was still good but there were always going to be these other thoughts creeping in. Felt like saying "Listen mate, when you've been there then you can lecture me". But he did mean well. He said he was going to try and find out what's going on with the hospital. Got another appointment with him Wednesday next week.   Today was a funny sort of a day, things changed rapidly and dramatically. One of the contractors working on my house project came to check the site and talk over things. He had just come from the hospital where he'd undergone radiation therapy for neck cancer. He was in bad way, it was really scary. It's just amazing how much cancer there is out there and mostly we are unaware of it.   Later there was a phone call from a woman identifying herself as my "carer". She wanted to know if I'd like to meet with the cardiothoracic surgeons Tuesday next week. The answer was a very definite yes, anything to find out what's going on. Then came the next question, surgery the next day? That was very short notice for something so significant. It wouldn't give me any time to organise my property for my absence and there was no indication of how long I'd be away. After telling her that she said they'd go to the next person on the list but would ring me back if the surgeons still wanted to see me on Tuesday. When I rang a friend and told her what had transpired she said I should just go for it and she would sort out something with my property. When I rang my 'carer' back she said they were waiting for a response from the next one on the list. May have missed my chance here, the surgeons are up from Adelaide and only here for a short time. But the meeting with them is still on.   There was another surprising phone call, from the respiratory nurse, only two days late. Seems like my GP had stirred them up. She waffled on with some excuses but it didn't matter as things had developed beyond that.   To top things off my GP rang so told him about the latest developments. He was pleased with that. His news was that tests had shown I didn't have diabetes.   So, from hanging for ages in limbo in one short day everything seems to have got back on track. There's still lots of questions but the opportunity to get answers has become real again. ... View more

@Budgie Got into town earlier this week and got the milk, honey and lavender. That lavender isn't cheap. But the bottle of it should last twenty or thirty years. The first night trying it there didn't seem to be much difference. The second night it seemed to work much better. Thanks for the tips. ... View more

@Budgie thanks. I actually gave up milk a long time ago. The old thing about cholesterol. Oh boy, the things I've given up over the years. Not that it seems to have helped me in the long run. But I don't have a cholesterol problem, how about that! Also don't add sugar to anything. But heck, those are the least of my problems now. I'll throw caution to the winds.   What I've tried is counting backwards. Started going back from 100. But my brain adapted and ran its little show behind the numbers. Went to 200 but the same happened. Now I'm at 1000. It's funny really, you could call it inflation. But my mind is keeping up, LOL.   My other tactic has been high levels of activity. That helps a bit with the sleep although still leaves me with a high level of tiredness.   It's all sort of like a juggling act with too many balls and not knowing which ones to drop. On a learning curve, just wish I could get out of the bottom of the "J". ... View more

I can understand your feelings. There's always questions of how or why for which there never seems to be an answer. And it's understandable to not want others to know about. However, it's good to have someone you feel comfortable with to talk about it. Someone supportive with whom you can share your feeling, or fears even. It all takes time but sometimes time seems to be the enemy. Try to maintain your activity as much as possible, your medical team can give you advice on this. But also keep your mind active and occupied as much as possible, it's important to your mental health. The name I use is a contraction of the old saying "Mens sana in corpore sano" - Sound mind, sound in body. My "sound in body" has gone a bit wonky, but I'm making every effort to keep the "sound mind" part.   Wishing you the best. Take care. ... View more

The roller coaster ride can get a bit rough at times. Can't complain really, don't know enough about anything to be able to complain. The brain PET scan and the lung evaluation were done over a fortnight ago, these were the final tests the medicos needed to start preparing a plan. If they are preparing a plan they're not letting me know anything about it. Don't know what to think. During the day I focus on working, and evening there's plenty of computer work with DVDs as a fill in where needed. But it's the nights after going to bed the mind runs wild making sleep elusive. The last several nights I constantly got up and watched DVDs to rein in my galloping mind. Of course, lack of sleep became a problem. Maybe due to exhaustion but last night I managed 4 hours sleep. It's made me feel a lot better.   Found myself a new GP but have yet to 'test drive' him, that starts next week. Just hoping it turns out something I can feel more comfortable with than my previous one. Time will tell. Another change of a really positive nature is that Telstra finally fixed my phone line. All it took was three months and me finally getting onto the Australian Communications and Media Authority (ACMA). The ACMA are the regulators of Telstra and can prosecute them. It's removed a lot of stress from my life at a time when it really isn't needed.   So the roller coaster ride goes on, with me trying to keep my hands within the car. ... View more