Grappling with reality

[MyheroCoolSpy]

Yes, it seems that you are the only one in a hurry 😁 Anyways, wishing you all the best. How's your condition by now?

[Budgie]

Hi @mensana,

How are things going this week, have you heard from them about your stress test yet?  It's sounds typical of Darwin medics. And I'm really surprised that they waited this long to get you referred to an oncologist. 

I was initially diagnosed while we were up there, & to say the least, I was not impressed with how everything was handled.   I was actually referred to 2 different oncologists to start with.  One was so arrogant & so far up himself,  he didn't believe me when he asked me if I'd had a CT scan of my head & told him no.  So he asked his nurse to find the scan results.   I stopped seeing him that day.  The other one was quite useless as I think I must have been his first patient.   He didn't even bother going thru the first report from a scan I had with me.  He just printed out a copy of it in the reception area & said we could pick it up on the way out.  So we sat in the car & googled everything in it.    He had told me I was going to have chemo first, then have the op to take my kidney.  But the surgeon had said the opposite.   Turns out the surgeon was correct.  

Then the Darwin Hospital isn't much better.  

The day of my surgery, the doctor nicked my adrenal vein as he was going in, so he had to quickly open me up further than planned so he could stop the bleeding.  I lost around 1litre of blood while they did that.   After the surgery, the took me to the Private hospital because there wasn't enough room in the public recovery ward.  The following day, the anaesthetist came looking for me in the public hospital.   They told her I'd been discharged 🤣.  A day after major surgery!  She couldn't believe it, she said, when she finally found me.    So many more bad things happened to me in that hospital,  but I  don't want to totally scare you.  I learned some valuable lessons during that time.  

- If you can, always have someone in the hospital to look out for your interests because the nurses don't give a f**k.  (OK, there were 2 nurses who were fantastic,  so not all nurses are that bad).  The day after my op, one nurse came in & told me to go have a shower, then walked out & left me to fend for myself.  I was lucky hubby came in just after because,  I  was in alot of pain, I was hooked up to  a drip, & I  had a drainage bag clipped onto the other side of the bed.  She'd left me to get out of the bed & get to the shower by myself!  Now, I understand they're understaffed, etc, but really, would it have taken her that much time to help get me ready, because there was no way that I was going to be able to get out of the bed on one side & have enough tube from the drain bag to stretch enough to get around to the other side.

- Always watch carefully, & double check everything they do.  I get reactions to adhesives, like really bad blisters.  I told the surgeon not to use anything but the tape I gave them to go over the wound.  BUT, he didn't pass on this info to his lackies who closed me up - they used a dressing with normal adhesive.   To make matters worse, they put the end of the dressing right over the incision.   So by the time I saw the dressing a day later & had it removed, I was covered in massive big blisters that ripped open when they took it off.  

Now, my hubby watches everyone like a hawk.  Unfortunately, he has to because they either don't listen to you, or are so used to doing something their way, they have difficulty doing things differently.   I even had one nurse say to me that when she's heard people in the past say they have reactions to adhesives, that she didn't believe them, until I showed her what I had suffered.  That's the mentality we're fighting.  We're just patients - what would we know?

I'm sorry about the rant.  I just have very little faith in the medical profession & I get angry about them.

Keep on top of them!  Chase things up!  Don't let them procrastinate, because it's your life they're playing with.

Thinking of you.  Take care

Budgie

[mensana]

@MyheroCoolSpy, @Budgie, thanks for the comments and support, even if some of the comments are a bit scarey 🤔

Haven't posted of late as I've been down in the dumps, didn't want grind on and moan about everything. But the reality is there's no rosey picture to paint. Did the exercise stress test in the morning and was told they'd ring me that afternoon. The test didn't show up anything other than that my heart was in good shape, so they said at the time. They seemed disappointed. So now they want to do another test inducing higher heart stress with drugs and monitoring it with ultrasound. They told me they're ring me at home that afternoon with more information.

Of course, nearly two weeks later and I still haven't heard anything from them. All this procrastination and there's been absolutely nothing to manage my condition. They must realise the cancer is still growing while they're scratching their collective backsides and uttering highly intellectual phrases and hmmmmms. There's been no show of any concern about my health or well being.

The Cancer Council counsellor rang me last week. He'd spoken with them and they told him I was a public patient and they hadn't decided what to do. They're just toying with me, treating me like a guinea pig. The counsellor did get onto the Alan Walker Clinic to find out what the hold up was in getting me an appointment with an oncologist. So later there was a phone call from them and now I have an oncology appointment for Wednesday next week. Their shrink is seeing me earlier the same day.

Doing a lot of whinging about being kept in the dark one of my GPs rang the hospital this week to find out what was going on. The information that came back wasn't a lot of help, other than saying that being in Darwin I can't be a private patient regardless of my health cover.

Then today out of the blue there was a phone call from my "care coordinator". She seemed quite put out that I got my GP to nosey around. I told her what had happened with the exercise stress test and the cardiologist forgetting about me. Generally, everyone seems to forget about me. She told me the exercise stress test was the last one, there were no other tests. But with all the stirring, the care coordinator rang back again later to say she contacted the surgeon's hospital (in Adelaide) and they might now have a vacant spot for me on 18th May. I just answered, "The sooner the better". Although, still no confirmation.

Funnily enough, my "Plan B" is getting along much better than my "Plan A". Got my will updated the other day. The stone mason finally came up with a quote for a headstone. Seems too much so I found another deal which looks a lot better. When I tell them it's for me they usually want all money up front. Guess they don't like dealing with executors.

Otherwise, life goes on as usual. There's a lot of work to be done on my property. The building work is progressing, even though all too slow. Today the riggers finished putting up the roof frame. I've nearly finished the fire breaks around the property. Monday I'm getting a hand fixing up the irrigation. There just doesn't seem to be enough time to do everything, especially as there could be a deadline looming up soon. But, not having been out bush of late probably explains my bad mood.

[Budgie]

Fingers crossed the surgery will go ahead in a couple of weeks for you then.
Keep chasing them up. Take care.

[Dee58]

@mensana

It's horrible and why should it be necessary for medical people who profess to care about humanity behave in such opposite ways... I do hope things work out for you... x

Dee

[mensana]

@Budgie, @Dee58 thanks for your support. Just today I was tiring of all the pushing and complaining. Beating your head against a brick wall takes it out of you. Then today out of the blue the care coordinator rang me up and said I was booked in for surgery Tuesday of next week (18 May). It's the Flinders Hospital, attached to the Flinders University, Adelaide. They fly me down on the Sunday, do all the admission stuff on Monday, and they carve me up on the Tuesday. Then I stay in the hospital for one week, another week in accommodation, and presumably back home following that. It was all a bit vague but supposed to laid out in detail for me tomorrow.

Wednesday I've still got the shrink and the oncologist. Hopefully that will help me get through the coming week. I've been losing sleep because nothing was happening. Now I'm probably going to be losing sleep because something IS going to happen. No wonder people think I'm crazy. 😕

[Dee58]

@mensana

But at last you have action! I hope it all goes most excellently for you!

Dee
x

[mensana]

@Dee58 thanks. My brain is a bit like spaghetti now, all over the place. I'm trying to focus on everything that needs doing before I go. But there's one hell of a lot more to do that just won't be possible to get done. Plus ringing people to change plans, particularly with the building project. I really feel snowed under. Better, I suppose than sitting around with nothing to do other than dwell on things. By tomorrow I'm really going to need a shrink, LOL.

[mensana]

Yesterday I had my session with the shrink. She was really good. Started off asking me why I thought I was there. The discussion was very in depth and I was able to relate my situation. The problem has been that no one's been interested in my circumstances, perspective or how I got to this point. Told her I was a whole person who didn't have the luxury of just seeing myself as tiny snippet of my life. It was all very personal to me. My issues didn't start spontaneously when a doctor looked up a test result and announced I had cancer. I also talked about the misinformation I was given when told the cancer couldn't have been there when I first raised the alarm about my coughing three years ago. I am moving ahead, the proof of that is going to Adelaide for the operation. But the rest needs to be acknowledged as well.

While at the Alan Walker Centre a social worker helped me finish off the Advanced Personal Plan (Living Will sort of thing). Another box ticked.

The session with the oncologist wasn't very informative. Understandable though as they're not really going to know anything definite until they've "dug in". But I was shown the visuals of the CT and PET scans. They were about two months apart and there was no noticeable change in the size of the cancer. There's going to be another pre-op PET scan. When I asked about Covid-19 vaccination they said better done after the operation when everything has settled down.

A new thing to me, have to get a permit to travel to South Australia. So everything is very hectic now trying to sort things before flying out in three days time. Last night I filled out the online SA Police permit application which was quite simple. Apparently Royal Darwin Hospital will fill out the Northern Territory one for the return trip. Because I'm flying on a Sunday the Cancer Council can't give me a lift to the airport. More complications!

I've finalised payment and everything for the headstone, plaque and installation so Plan B is pretty much sorted. However still feel there's too many other thing that need doing before I go down south. Not enough time, but really need more time.

[Budgie]

I'm glad the surgery's going ahead quickly for you now @mensana , & I hope everything goes smoothly for you.   Try not to worry about what you don't get done before you go.  There's no point in worrying about what you can't control, & sometimes there's just never enough time to get everything done.  

I wish you all the best.