topic Re: Grappling with reality in I've just been diagnosed

Grappling with reality

mensana — Sat, 27 Feb 2021 08:18:02 GMT

Guess I just need to sound off as I'm isolated, alone in a rural area. A bronchoscopy showed part of my lung is collapsed and there's a tumour suspected to be cancer. The bronchoscopy was a follow up from an xray and a CT scan. They did a biopsy but the results aren't back yet.

The doctor who gave me the preliminary findings immediately after the bronchoscopy kept saying "Sorry" and was generally very negative. He didn't want to give me any "false hopes". Told him a few little false hopes wouldn't hurt. The ironic thing is that I've never been a smoker ever in my life. The hurtful thing is that I've been at my doctor for 3 to 4 years about my cough. Have kept telling him there's some thing wrong because it's not a normal cough. But he kept insisting it was just hayfever, or a reaction from reflux, "Don't worry about it".

Late last year the cough got so bad had to tell the doctor it was time to really get this checked out. He finally agreed to refer me for an xray. The results showed an anomaly in the left lung. A subsequent CT scan showed a part collapsed lung and a tumorous growth. Then came the bronchoscopy.

To make matters worse, my phone went down about 6 weeks ago and I've been in a running battle with Telstra to get it fixed. They just do nothing. My doctor put in a Priority Assistance form to them which guarantees fixing of phone lines in 48 hours. It's made no difference. Went to the Telecommunications Ombudsman just as useless there. Went to my local MLA's office and put in a detailed account of my problem with Telstra, but no response there. Contacted the Minister for Communication's office, after some time got a reply that they had passed it on to the "relevant office". Still no telephone and I'm at my wits end.

Trying to stay positive is a bit of a struggle, although living on a rural block there's always a lot of work to do which keeps me occupied, body and mind. Now and again there'll be this twinge of anxiety, but focussing on some work usually overcomes this. Afterall, "the fat lady hasn't sung yet". The hospital was going ring to check in on me because of my isolation, not much chance of that. There's no ringing anyone if really needed. But, knowing the situation I'm in, it's clear what needs to be done - tough it out day by day. Still having good mobility and much to keep me occupied makes it easier.

Sorry for the long rave, and thanks to anyone who got through it. But it is nice to be able to put it out there.

Re: Grappling with reality

Dee58 — Sat, 27 Feb 2021 08:32:57 GMT

That’s why we are all here... to get it off our chest and share in a safe place. I hope it works out for you... you don’t need all those annoying things in life on top of everything else! Xxx

Re: Grappling with reality

Budgie — Sat, 27 Feb 2021 21:28:29 GMT

Hi @mensana,

There's no need to apologise for a long rave. Sometimes you need to have a rant to keep your sanity.
Being on a rural property, you wouldn't have much choice of doctors close by, I suppose. So it would be hard to be able to choose who you see, let alone get a second opinion. That doctor may have cut your life short by many years simply because of his apathetic, she'll be right mate attitude. One of my pet hates is people who can't/won't do their job properly simply because they can't be bothered. And it's everywhere, as you've discovered thru your dealings (or lack thereof) with Telstra. Are there any other doctors you could see in your area?

I'm sorry you are having to go thru all this, & hope the results get to you soon, as the waiting can be horrible.

All the best
Budgie

Re: Grappling with reality

mensana — Sun, 28 Feb 2021 14:54:12 GMT

Thanks for your supportive comments Dee58 and Budgie. Finding this site has certainly helped me, don't feel so much backed into a corner. Reading other posts helps as well.

Alternative GP's aren't all that far away. I've lived much of my life in remote areas, one time where a doctor came once a fortnight for two days to a clinic which was about 100 kms away from where I lived. However, there were nursing staff there all the time. For me, moving into a rural area was like a move into the 'big smoke', LOL.

Don't really feel inclined to go back to the same doctor. But shopping around for an alternative is a bit daunting. The thing is, I'm now really in the hands of the specialists. A GP wouldn't have any significant input any more. And anyway, you never know what sort of a GP you might end up with again. Just have to concentrate on getting the "What if's" out of my head. It is what it is and I have to deal with that.

Re: Grappling with reality

sch — Sun, 28 Feb 2021 23:46:41 GMT

Hi,

Just bear in mind, that if you do want or need to discuss things and your specialists aren't available, you can always Cancer Council telephone support service.

https://www.cancer.org.au/support-and-services/cancer-council-13-11-20

-s

Re: Grappling with reality

Budgie — Mon, 01 Mar 2021 00:26:32 GMT

I understand about not wanting to look around for another GP, but its advisable to have one as they can help treat any side effects that may come up, like pain medication etc, that the specialists don't usually concern themselves with. Anyway, good luck with it all. 🙂

Budgie

Re: Grappling with reality

mensana — Mon, 01 Mar 2021 11:19:15 GMT

Thanks sch. But as I mentioned before, Telstra is making sure I don't have any possibility of ringing anyone, or of anyone ringing me.

Budgie, I've been recommended a good GP now. Bit of a further drive, but hopefully an improvement. Thanks.

Re: Grappling with reality

sch — Mon, 01 Mar 2021 12:04:13 GMT

Hi,

How do you access the cancercouncil website if you don't have any phone line or internet?

Do you have access to the internet via "skymuster" or are you accessing from a neighbours house?

I understand the frustration that you're going through utility services.

When I was younger I lived out in a regional area and the telephone and electricity went down for a week+ at a time. It wasn't unusual.

What has the ombudsman said so far?

How have you been contacting telstra to log the issue with the telephone? Heading in to town?

-s

Re: Grappling with reality

mensana — Tue, 02 Mar 2021 11:27:59 GMT

@sch

The whole telephone issue is quite involved and not really a focus of this forum. But briefly, there is WiFi even though slow at times. For voice mobile you generally have to drive off to a higher hill. Sometimes I get help from a friend, providing her service isn't off line as well.

Telstra is bound by the Universal Service Guarantee, Customer Service Guarantee and the Priority Assistance Guarantee by legislation but it appears it's not enforced so they ignore it.

I first reported the fault (online) 12 January, TIO gave Telstra til 17 February to resolve the problem (Priority Assistance states it must be fixed in 48 hours). Late last week (26/2) TIO said Telstra would send someone out to report back on the fault (there have already been two visits/reports on it). And so it keeps going around in circles. But the whole Telstra story is quite big and off topic here.

But back on topic, things are okay, still keeping very busy. Although the other night it got a bit iffy with the breathing. Wanted to drive to hospital but then thought that might be more dangerous than riding it out at home. By morning things settled down and the feeling of panic subsided. A visit from a couple of friends later in the day perked me up. It's like riding a yoyo.

Re: Grappling with reality

sch — Thu, 04 Mar 2021 03:35:32 GMT

Hi mensana,

I'll be honest with you. We're not always perfectly on topic around here, but that's OK.

Good luck with Telstra. It sounds like you're going to need it.

Back to your original post and your doctor's response. He probably feels a bit guilty after you have been discussing these symptoms with him for quite a while. Also, many people are not used to talking about cancer. They don't really know how to respond.

You sound like a tough cookie, at least on the surface.

How are you holding up otherwise?

-s

Re: Grappling with reality

mensana — Thu, 04 Mar 2021 08:35:58 GMT

Good news, the temporary phone link has just got restored and the hospital managed to get through to say they'd booked me in for a PET scan next week. The biopsy results were probably not in my favour. So, not being able to contact me, that'll be why they set up the PET scan. After that I guess we'll be looking at how to go forward.

It's still only the beginning but I plan to be tough as long as I can. It's all you can do. And if I'm still in denial, that's OK too. There's so much needing doing, I dread the thought of being incapacitated.

Re: Grappling with reality

Budgie — Thu, 04 Mar 2021 22:22:57 GMT

You'd be amazed at what the human body/mind can put up with. It's all a matter of attitude.

Budgie

Re: Grappling with reality

mensana — Sat, 06 Mar 2021 07:54:28 GMT

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

Re: Grappling with reality

Budgie — Wed, 10 Mar 2021 00:52:08 GMT

Great idea to post your journal. 😉

Re: Grappling with reality

mensana — Sat, 13 Mar 2021 06:51:12 GMT

Well, got the PET scan done, and didn't have to go to Adelaide for it. They have their own "doughnut" here. Yesterday was result time. The doctor was very nice. Said she was the respiratory specialist's off sider and was tasked with doing all the research on my case. She knew EVERYTHING about me and was pleased to finally meet the person. I didn't know what to make of that as it came out so fast. Felt a bit of an anxious twinge and got worried there was a **bleep** developing in my 'denial armour'.

The biopsy done during the bronchoscopy showed it was cancer. I think the doctor said adenocarcinoma but a bit hard to remember now as there was a fair bit running through my mind. The PET scan didn't pick up anything outside the lungs. She said there was going to be a medical team helping me through this. They needed to do pulmonary function tests as well as a CT brain scan. That last one puzzled me. Jokingly said you won't find much there, and asked why it was needed. Apparently the PET scans don't cover that area so the extra scan it just to make sure.

The specialist came in briefly. He seemed a bit put out when I said I preferred no chemo. He went into a bit of a ramble about how it was different now with different drugs which don't have the old bad after affects. Still said I'd prefer surgery but of course it was still early so time yet to work it all out. That would mean going to Adelaide (Melbourne was another option but I said Adelaide). When I chipped in that if my GP hadn't played it down three years ago this could have all been done back then. He immediately jumped in saying nothing would have been picked up back then. The same persistent cough has been there all this time but he said there would have been something different causing it then (sounded a lot like my GP). The specialist didn't seem to like me making choices and having opinions. From his grumblings I got the impression he wanted me to take a back seat and accept whatever was decided for me.

Soon it was just the specialist's offsider and me. She was ringing around trying to get the lung and brain tests organised ASAP. So that is now booked in for next week. Time spent in Adelaide would be about two weeks. Then about six weeks of recovery unable to do any hard work.

It's never a good time of year to be laid up. So many things needing doing. You try to live your life working through certain plans but then distractions come along trying to push you off course. But, it is what it is. About the only certain thing in life is that there is no certainty.

Re: Grappling with reality

mensana — Mon, 15 Mar 2021 07:06:33 GMT

Drove to the hospital this morning and had the brain scan done. They took a couple of images before giving me the iodine dye and then a couple more after the iodine. The whole procedure was quite quick.

Thursday should get the pulmonary function test done and then that's all the information that's needed, apparently. Soon it will all be down to business sorting out how we move forward. I seem to be succeeding in dulling my emotions (so far). Can't see the sense in worrying about it, there'll be time enough for that later. Meantime, I feel quite comfortable in my little 'cone of denial'.😎

Re: Grappling with reality

mensana — Thu, 18 Mar 2021 09:50:13 GMT

Today went in to get my lung evaluation. The last test before decision time. I blew (excuse the pun) some of the tests as I found them tricky to do but also they made me want to cough. Suppressing the cough, not always successfully, often stuffed up the test. My blood/oxygen level was checked and it was good. Also checked haemoglobin and that was good. Apparently test results take about a week. More waiting. I'm not getting any younger, the cancer's not getting any smaller, and my patience is wearing a bit thin.

During the week I did what was possibly a bad thing. I checked out Dr Google on the timeline for lung cancer. Not a happy story. It did confirm the cancer should have been detected some years ago, my symptoms were classic. It makes what the specialist said to me worrisome. Also checked mental health. Well, in the timeline they strongly suggested doing that and gave a link to information. On that count I'm doing well, I hope. It's still very early days in a rather bleak future. Oh well, you can only do what you can do.

Re: Grappling with reality

Budgie — Thu, 18 Mar 2021 23:45:09 GMT

Hi @mensana ,

I don't think using Dr Google is that much of a bad thing. It's better to have as much knowledge of what your facing as you can get, & as long as you read from reputable sites & have common sense, I think its a good thing. Just remember that everyone is different & doctors CAN be wrong! Using the internet can awaken you to things that doctors may neglect to mention, therefore you can ask questions relating to your specific needs.

I understand your patience wearing thin, & your mental health seems good. Attitude plays a very big part in coping with cancer. It's when people give up hope & have a defeatist attitude that the 'battle' is lost. Chin up, suck it up & get on with living. 😉

Take care

Budgie

Re: Grappling with reality

mensana — Fri, 19 Mar 2021 11:57:55 GMT

@Budgie
Thanks for the comments. Yes, that's about all I can do now, suck it up, and knuckle down. There's a lot to do. With the breaks in the rain we're getting now, mowing and weed spraying jobs have become a priority. My building project that got stopped by the rain is back on again (well, almost). General maintenance about the place. Not to mention the ongoing battle with Telstra which also takes time and energy. Come to think of it, I really need more hours in the day, LOL.

Take care

Re: Grappling with reality

mensana — Sat, 03 Apr 2021 08:27:19 GMT

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.