Grappling with reality

[Dee58]

@mensana

Any time! I'm in W.A. - not sure of time diff - is it 2 hours or just 1? Anyhow I am working from home while I have treatment so I'm online on my laptop most of the day and evening - always here if you want a chat or to offload or vent.

With sleeping, since my hubby died six years ago (also of cancer... at this moment in time including him and myself, I am aware of 6 people in my street who have/had cancer!!), anyhow, even though I changed the bedroom as much as I could and I have a TV in there, I still find it easier to sleep in the loungeroom on the leather sofa in front of the tv... I pull the legrest up and push the back backwards and it is so comfy. (It's an L shape and only the two very end parts have that capacity - the rest is normal sofa.)

I have a marvellous sleep on it and have given up thinking I HAVE to sleep in a bedroom if I don't feel like it. When winter sets in I will probably go back to my bed because its warmer in there.

As I was saying to another Cancer council friend, I'm a great believer in quality of life, not quantity. So you do things that give your life meaning and quality and forget about other people's opinions (including mine if they don't gel 🙂 ) and the shoulds and oughts...

Save me going back thru posts here - do you work at the moment? Because if you do but time is flexible for you or if you don't then when you sleep doesn't matter - be awake when it works for you, and sleep when it works for you and again, don't care about if its normal people hours... you're not normal people just now so those rules dont count. Only YOUR rules count.

[KaceJax]

The burden is unbearable, but we are here fighting the battle with you. However, you need a physical support coming from your loved ones. They are a good source of positive energies and happiness. Have you already talked to them?

[mensana]

@Dee58 We're 1.5 hours ahead of WA, the east coast is 2 hours ahead. I'm retired now, took a redundancy and then tossed it in a few years back.

My sleep pattern also tends to follow what works to an extent, but influenced by things I have to do and my trips out bush as well. If I can't sleep there's always something to do. Don't want to waste time tossing and turning in bed.

@KaceJax Sometimes the burden does seem unbearable, but we need to get through it. What's been happening with me is there are times when there appears to be no burden and I wonder what all the fuss is about. It's a regular roller coaster ride. "Loved ones" are a bit in short supply but what I do have I really appreciate.

Yesterday had my meeting with the Cancer Council counsellor (try saying that fast a few times). I started off saying "I don't really know what I'm doing here and I don't really know what to say." Of course that rapidly changed and I soon opened up. Can't allow my reputation for being able to talk under water getting ruined.

Apart from allowing me to get back into balance I also found out about their support services. At the end of the (long) session I felt on top of the world.

Early this morning I headed out bush. Did a lot of walking, including some steep climbs. The steep parts slowed me down but I managed. Just over ten years ago I walked the Kokoda Trail. Can't see myself doing that again any time soon.

Planning on going out again tomorrow, all flat country though so a lot easier. Bit of rough driving involved but with wet season over it's drying out now so shouldn't be a problem.

The appointment with the cardiologist is on Monday. The heart will have had a good work out by then. Meantime I'm still feeling really good 😁.

[Dee58]

@mensana

Sounds promising... nice that you have that wonderful outback so close to escape to as well! I hope things continue on an upper for you...

Know what you mean about family - I have just an older brother who doesn't want to now about me or my cancer - we didn't grow up together - when our parents split when I was 4 he went with my dad and my mum took me... and that leaves my daughter - who is living interstate this year doing her final year of Masters at Uni and I don't want her to know - she made me promise I wouldn't go getting cancer or dying on her when h er father died from cancer 6 years ago! If I go she'll be alone... I will tell her one day when this is over and she comes back to visit but for now she's not to know... so I find the only place I can vent to as well is on here 🙂

[mensana]

@Dee58 There's the old saying, 'You pick your friends but you're born with your relatives'. It's a difficult balancing act with your daughter, she may end up resentful that you kept this from her. There's nothing easy about these situations.

Had my day out yesterday. Ended up trudging through swamps again but had a great time. Today my legs are a bit sore, pushing through tall swamp grasses and having to lift legs high takes it out of you. But I should be good for the cardiologist this afternoon. Being out bush all this seems so far away, then you return and it's back to reality.

[Dee58]

@mensana

its a risk I'm willing to take. You see her father died from cancer 6 years ago and she made me promise I wouldn't go doing anything like that to her. We are very close - and in addition to that when I die she will have nobody here. I AM her only real family. She has no living brothers/sisters. She doesn't even have any cousins here. She does in Norway but that's a long way from here.

Last year she moved to Melbourne to do her Masters at Uni and no sooner arrived they went into lockdown for the year - but not before her boyfriend decided to join her and also went into lockdown. It was a shocking year for them. Then days before Xmas he broke it off and moved back to Perth soon as the borders opened. Can't blame anyone from wanting to escape Victoria!

So THIS year she has a nice new apartment, back at Uni, things are finally on track for her and she is finally starting to sound happy. I am not going to take that away from her. This is her final year there and it is important for her career and future and as I said, she is actually happy now. That means more to me than gold.

And I do believe she will understand why I didn't tell her while it is happening to me. If I told her now she would be distraught and worried sick and not concentrate and the happiness would go again. I refuse to do that to her. She is my last surviving child and the 'baby' of my shrinking family. She means more to me than life itself... she is the reason I get up every morning... so perhaps you can see why there is no way on gods green earth I am going to tell her about this now...

I will tell her when she completes her masters and I see her at the end of this year. 🙂

[mensana]

Funny in a way, after meetings with surgeons or GPs I come away feeling a bit down. On the other hand after the meeting with the Cancer Council counsellor I was on top of the world. Today was the cardio exam. The cardiologist said my heart was strong which would help me a lot through this. And with never having been a smoker she said that my lungs must be good too and that also goes a long way in helping. So many mixed messages. I know who I'd rather be talking to. But what the heck, you live while you live. There's plenty of time for whatever else later.

Just some thoughts at the end of another day.

[mensana]

All this procrastination is getting me down again. I did their cardio test and again ended up against another blank wall, one of the proverbial "mushroom people". So, after a few days I rang the care coordinator. I'm sure they'd forgotten about me again.

Anyway, she tells me there's another test I have to do - "Exercise Stress Test". If they put me through a procrastination stress test I bet the readings would be up through the roof.

I just get the impression they're stringing all these tests out every one or two weeks just to stall the whole thing. When I suggested that to the care coordinator she said she'd try to get something sorted. So just a short while ago there was a phone call to say the exercise stress test would be done next Tuesday (today is Friday, Monday's a public holiday). Why am I forced into being a 'squeaky wheel'?

As I've said before, I'm not getting any younger, the cancer is not getting any smaller. The PET scan showed the cancer hadn't spread outside the lungs. Are they waiting for it to spread so they can have something a bit more challenging to deal with?

Crazy times! Can't wait for the roller coaster to get back up the rise so that I can see clear blue sky again.

[mensana]

Managed to sort out my "Plan B". During a previous cancer event I put a "Plan B" in place. Bought a cemetery plot and organised a headstone. Paid for all that and felt quite pleased with myself. As it worked out Plan B wasn't needed. But unfortunately the stone mason I'd paid for the headstone did a midnight runner. So no stone, and no money. During this past week I sorted out the headstone again, so plan B is once more back on track. It's good to have things in order.

Went bush again today to clear the mind. I've spent too much sleepless time at home just losing control of my thoughts. This time I didn't get into the swamps. Mostly up and down rocky slopes off the beaten trail. I like a bit of scrub bashing to get to places no one else goes.

It's strange, but great, that with this sort of activity I feel pretty fit (and healthy). Back home not so good. Even cough a lot more when just sitting down at home and not being particularly active. Maybe it's just psychosomatic.

After getting back I managed to sleep a couple of hours, very much a plus. All in all, a good way to end the week.

[mensana]

Went in for my exercise stress test today. They wired me up and took all the measurements while I was laying down at rest. Then they put me on a treadmill, still all wired up. They kept stressing that if I felt faint, or got chest pains at any time to tell them and they'd stop the machine. But for the test they needed to take me up to an extreme.

At first it was an easy, level walk. After three minutes they checked my blood pressure and heart rate but it hadn't changed. They upped the walk to a fast pace and inclined the treadmill to a slight climb. After a few more minutes they checked again. This time the heart rate was up. So they upped it again to a very fast walk just short of jogging, and made the incline steeper as well. This time the breathing rate went up, as well as the heart rate and blood pressure. But still no particular discomfort or strain on me. When they said they were turning it off I suggested not braking suddenly as I might end up over the handle bars. At the end they kept me wired up while I returned to a normal resting state.

The woman 'orchestrating' or 'conducting' the whole exercise said they'd still have to get my heart to an extreme state of stress while they monitor it with an ultrasound. This treadmill test didn't take it far enough. The stress would be induced by drugs. They seem determined to get me to breaking point one way or another. So the 'conductor' said she'd ring me at home this afternoon after she'd sorted it all out.

When I got home no phone call or messages. After the test I'd had an appointment with the GP so I told him all that had happened. Also said I was concerned that I'd be dead from cancer long before the tests were all completed. He's now referred me to an oncologist. It will be interesting to see how long this takes. I still haven't heard anything back from the referral to a psychologist, and that's been a couple of weeks now. No one seems to be in a hurry, except me.