Grappling with reality

Budgie
Super Contributor

Re: Grappling with reality

Hey @mensana,

 

I was thinking of you yesterday.   Good to hear Telstra has finally done the right thing, & you've got a new GP.  Here's hoping he's better than the last.

Do you like milk?  You should try drinking a cup of warm milk with a teaspoon of honey stirred through before you go to bed.  Milk is a natural sedative.   You can also try a drop of lavender oil on your pillow.   It also has properties that can help you sleep. 

 

Re not hearing from your medical team - give them a call.  It doesn't hurt to keep them on their toes.

 

Cheers

 

 

mensana
Contributor

Re: Grappling with reality

@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".

Budgie
Super Contributor

Re: Grappling with reality

I feel for you.  I have sleep apnoea & use a CPAP machine which quite often keeps me awake.  Another thing I can suggest is either reading or listening to relaxation music, or both.  If I start reading in bed, I'm lucky to last a whole page.  One more thing you could try is meditation.  I hope you get some relief soon.  Otherwise, maybe some medicinal relief thru your GP?

mensana
Contributor

Re: Grappling with reality

@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.

mensana
Contributor

Re: Grappling with reality

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.

Budgie
Super Contributor

Re: Grappling with reality

@mensana , glad to hear things are starting to happen for you.   Keep them on their toes.   Question anything you don't understand & watch everyone carefully.   Since my diagnosis I've become very disillusioned with the medical profession.  The incompetency is rife.  I could give you numerous accounts of doctors & nurses stuffing up with me.  Sometimes I wonder how anyone survives in hospitals. 

But anyway, a good suggestion is to write down any questions you may have between now & your appt time.  I find there's usually at least 1 question I forget to ask, (chemo brain is real 🤪).  Make sure they explain exactly what the surgery will entail & all the follow up treatment.   I'm sorry - I'm sounding a bit like a mother, aren't I!  I just hope everything goes well for you.

 

Glad to hear you're finally getting a bit of sleep, although you were still awake in the wee hours.  So maybe the warm milk & honey isn't enough?

 

Take care

Dee58
Contributor

Re: Grappling with reality

@mensana

Good to hear things are starting to happen for you... may I ask if you're going thru as a private or public patient? I see there is quite a difference... I'm funding myself (used all my savings 😞 ) but they have fasttracked me so quick my head hasn't stopped spinning and they treat me like royalty but from what I've heard from people doing it thru th epublic system its nothing for them to wait months or more than a year for treatment and follow ups...
mensana
Contributor

Re: Grappling with reality

@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?

Dee58
Contributor

Re: Grappling with reality

@mensana

Yes I took up private health insurance when my husband died of cancer 6 years ago. We had let it go because it got too expensive but then he had to go thru as a public patient... my private health insurance enabled me to be fasttracked through the system... I have one of the States best ENT surgeons whose public waiting list is over 18 months long! I saw him immediately. Had surgery straight away and soon as that healed went straight into treatment. I know some who are going thru as public patients and attending government hospitals and not the private clinic I attend... they also get some expensive medications for free while I have to pay... but they also wait a long time to see their specialists who are nobody special and aren't looked after anywhere near as good as I am. My private health only covered my in hospital expenses and not my treatment. I pay a gap that medicare doesn't cover and pay for my own medications and specialist appointments. Thank god I had savings!

And I have regular appts without waiting for my oncology doctors too... and my ENT surgeon has already made my booking in advance to see him after treatment. As I said, he has an 18 month waiting list of public patients who want to see him...

These "savings" were going to be part of my retirement when the time comes... I won't have that money now but at least I'll be alive. I have much to be thankful for.
Budgie
Super Contributor

Re: Grappling with reality

@mensana , @Dee58,

 

I took out private health cover after I was diagnosed, so of course I had to wait 12 months before my cancer was covered,  but I've always been treated quickly thru the public system.  I had my initial surgery (total nephrectomy) in Darwin Public Hospital, one month after I was diagnosed.  

I served time in the Navy a long time ago, but a few years ago it was decided that any malignant neoplasm would be covered by DVA, if you've served long enough.  So now, thankfully, I'm covered by DVA as my chemo costs just under $10,000 a month.  There's no way I could possibly afford that.  Now I pay just $6.60 a month.  DVA will cover all of my costs for cancer.  I am SO VERY lucky, & thankful for every day I have.

 

 

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