Grappling with reality

[Dee58]

@mensana

Make sure you continue to eat well and sleep while you can... it may change down the track 🙂 At the moment all I can handle are liquids and out of all the liquids the only two things I can detect faintly are orange and lemon - unfortunately drinking those juices stings my throat too so I have to water them down by which time they taste like nothing. Every time I try something else, even a mousse or yoghurt, its like eating a soft cardboard. Everything either tastes like nothing at all or cardboard... and have to gargle with pink lady even before drinking - swallowing my own saliva hurts 😞 And don't get me started on the wall of phlegm and mucous that builds up at the back of my throat that like a hockey goalie tries to stop everything from getting thru... but I don't think yours is head and neck cancer is it... I forgot, sorry... you won't have problems eating... unless you have chemo... that affects your taste too.

Oh, I lied... I can detect the taste of salt too 🙂

Anyhow, wishing you well... rest while you can unless there is something good on TV 🙂

[mensana]

@Budgie, the food is good here, I'm quit happy with it. The anaesthetics haven't been doing alll that much.But without them most probably it would be a lot worse.. I've been doing laps of the ward using a stroller thing. I'm drawing attention to myself as It's up to 8 laps three times a day. Previously I was going down hill after the op. But the walking seems to have picked me up.

@Dee58, I am eating well, they have a choice between healthy and ordinary, it's working well. I'm going to ask for an oncologist here in Adelaide. The problem has always been delays. They spend ages working out what happens next, or talking about new tests. I don't want to wait until getting back to Darwin and having them scratching their backsides for the next month.

[mensana]

Lot of time gone by, nothing much happening. I've pointed out to the surgeon a number of times that first diagnosis was nearly six months ago. And as of now, six months later, I haven't had any type of treatment whatsoever. The cancer hasn't been taking a holiday. They knew one possibility when sending me to Adelaide was that nothing could be done surgically. When that became obvious they could have started working out a plan.

Of course they didn't. They're just waiting until I get back to Darwin and then seeing when I can get an appointment with an oncologist who will then start looking over my case and then start to formulate a plan. I asked how many more months is that going to take. They keeping falling back to the fact that even if I saw an oncologist now they couldn't start treatment until I'd fully recovered from the surgery that they did perform. I reminded them there was a big difference between starting planning and starting treatment. Planning should have started immediately. The cancer was already advanced when first diagnosed.

Still don't know when I'm going back to Darwin but they postponed their last travel date. I'm not in a fit state to travel. When the physio heard she put in a report stating I wasn't in any way fit to travel and needed more rehab. There was quite a tussle going on between the physio, some of the nurses, even the hospital chaplain, all against the surgeon. When he saw me again he commented that I'd been doing a lot of talking to a lot of people.

I checked the Darwin end, my care coordinator, and she didn't know anything. She just thought I go back home and contact them later. Had to remind her I can't go home on my own. I went to Adelaide a fit and active person, and now I'm virtually a cripple. You could probably make a comedy film out of this and people would laugh if they didn't know it was true.

[Dee58]

@mensana - disgusting this is happening in Australia! They do this to public patients - cheaper to cover your cost of treatment if you're dead I suppose then they can save their money and give themselves payrises instead.

Stay alive and stay that thorn in their shoe!

I went through as a private - pay it myself at private clinic - patient and was rushed through with no waiting whatsoever and gold star during/after treatment. If you can afford it, get out of the public system and go private. I went with GenesisCare but there are other cancer clinics too, not just them. Not sure about in Darwin though. Is that Alan Walker Cancer Care Treatment place that is also situated within the Darwin Hospital the only place in NT and is it government too? That's not helpful if its government/public...

Anyhow, sending you lucky positive vibes!

D
x

[mensana]

Thanks @Dee58. That Alan Walker Centre is part of Royal Darwin Hospital. I am a Private Patient, have had private health cover most of my life. It doesn't seem to make much difference. Although, I went to Flinders Private Hospital in Adelaide, not Flinders Medical Centre. They sent me back to Darwin on Friday. I was all drugged up so it wasn't too bad. There's a weeks gap to when I have the oncology appointment. So they arranged a hostel for a few days and then I'd have to make other arrangements myself. I got sick of all the mucking around with accommodation so decided to make my own way home.

Unfortunately, later much of the medication seemed to wear off and the pain became acute. None of the medications they'd given me seemed to work so I rang Health Direct and talked to one of their nurses. They suggested I ring 000 and get into the nearest emergency centre. I figured the medications in Adelaide were a bit stronger than the new ones they'd given me. Or else, something had gone wrong where they'd operated.

At the hospital they kept me in overnight. They did CT scan, x-rays and blood tests. Looks like it was just a matter of upping the pain killers. So yesterday and today have been good. Certainly not as good as before going to Adelaide, but the pain is under control. Tomorrow I see the oncologist, start of another chapter in this sorry tale.

[Budgie]

Hi @mensana ,

How is the pain level now?  I hope you're feeling better than you were.   What did you think of your oncologist?  I had a Dr Gupta when I went to the Alan Walker Centre.   I can't remember his first name, but I wasn't impressed.   I hope you have better luck.

[mensana]

Yes, feeling much better physically, but mentally it's a bit of a struggle. The oncologist said it wasn't likely they could get rid of the cancer. But they will treat it to make it shrink and slow down. And believe it or not, they sent me for more tests and no actual plan, other than they want to do immunotherapy. I went and got the tests done. First blood while at the hospital. They also want scans again and managed to get those done in Palmerston Hospital on Friday. Don't see the oncologist again until middle of next week.

It's back to the same old same old - no one seems to be in a hurry to get me started on a treatment.

[mensana]

I haven't posted anything for a while now. That's because nothing has changed. They keep sending me for more tests and nothing for treatment. I keep asking why there's been no treatment in six months but only get blank stares from them. Today an oncology appointment that had been postponed from from last week. And another appointment (initial appointment) with a radiology oncologist next week. About three weeks ago they got me to sign a waiver for immunotherapy. But no treatment. I'm at the end of my wits, feel like I'm bashing my head against a brick wall.

[mensana]

Not as much whinging or whining today, yesterday had the oncology appointment, the one that had been postponed from last week. Last Monday I had a PET FDG scan, same as I'd had a few moths ago. So, along with last week's seven blood tests and CT scan, yesterday they should have had all the needed information , and more. I was told the appointment was for the oncology registrar. In frustration I spoke about my concerns with the Cancer Council Counsellor, again. He said he would come to the appointment with me as support. As it was, he had a trainee nurse with him. So it was the three of us facing the oncologist on his own. This time he "sung like a canary". He explained things carefully and paused to make sure I understood. Carefuly listened to my queries and answered all of them. Lesson learned, don't go to these appointments on your own. There's a big difference in how you're treated.

The upshot of all this is that next week I see the radiological oncologist and in a couple of weeks they should commence concurrent chemotherapy and radiotherapy. The chemo will be one day per week, the radiotherapy five days per week. Fingers crossed! Of course, I'm not going to count the chickens yet. Three weeks ago I signed the usual waiver for immunotherapy and nothing came of it.

[mensana]

Life is full of surprises. Yesterday, totally unexpectedly the original respiratory specialist (of about 5 months ago)I saw after my diagnosis rang me at home. Said he'd been told by some nurses that I had big concerns with how I'd been dealt with. He was talking 24 to the dozen but I still managed to get my say in and laid it all fairly and squarely on him. He said he was investigating what had happened to me to improve the system so this sort of thing didn't happen again. The whole discussion took 29 minutes, according to my phone, and was very word heavy.

Throughout the whole time after diagnosis the nurses (and the physiotherapists in Adelaide) were the only ones who would listen to me and later most of them expressed surprise that I could be left so long untreated. The respiratory specialist did try to play down what I said about the cancer having grown a lot in the past six months. He claimed there was very little difference shown between the PET scan in early March, and the one last week. This would appear to contradict what he told me back in March, that the cancer was growing fast. (Luckily I keep diary notes.)

It seems they've gone into damage control mode. And, if so, they may fear they have left themselves exposed. Because, he did say that when they realised some things couldn't be done in Darwin they should sent me down South for everything. In the coming week I'll be seeing the radiology oncologist and have the Cancer Council counsellor with me again. I'm feeling more positive now, after a long bad run. Just hoping the light towards the end of the tunnel isn't a train.