Aug 28, intermission week

This week I don't have a treatment, so its not busy at all. Ha! I think I see why the break is needed, I am not spitting blood anymore, but I am definitely shedding hair, a lot, just like my german shepherds used to in spring. You should see the bathroom floor...on second thought, maybe not, let me vacuum it first. And, I have started taking nana naps, I cant get through the day....Oh, and not to mention the constipation, my poor rippy ass. I suppose its just buttering me up for the future?

Monday - had my echo just to keep an eye on the heart. Mitchell, the cardiac tech, took me through it all, made me feel really involved, and even allowed a chat. Did you know, they do a separate course to radiography? Its all ECG, Echos, stress test etc. I will have to tell my niece, she has been going to the Uni Open Days and was considering radiography...

Tuesday. Fence contractors turn up to replace my front fence, which partly blew over in a recent windstorm (remember that comment about looking like a squatters abode?) The gate has been propped up against a wall for weeks. Classy. Have a wild guess how much fun it was trying to arrange quotes while I was running in and out of hospital every 2nd day. Because we all know how, umm, reliable, tradies are. In the end I went for a metal replacement, same price as timber but without the maintenance I wont be able to do. No rotting either. Here is my front yard this morning: (they're the new panels to be assembled, the old fence is at the tip now)

Also Tuesday, exercise session at the wellness center, I didn't flake out! Followed by a lecture on cognitive decline in cancer. It was pitched at an audience with no knowledge so it was boring for me. I am pretty sure I didn't snore but my eyes were definitely closed. In the afternoon, a work colleague dropped by. It was nice. Thank you to those people who have reached out and visited, it makes my day.

Today I am taking mum to outpatients at the Alfred, dealing with tradies (if they deem to turn up, because, you know, tradies..), and tomorrow is another exercise session and lecture. So, not busy at all. Oh, and definitely to get done today - track down my house invader - walked into the spare bedroom to look for photos, and eyeing me off from the window frame was a hairy huntsman spider. Only a little one, maybe 3cm body size, but we did a mexican standoff eyeing each other off. I backed away, slowly, slowly, to get the vacuum cleaner, figuring I would suck the little dude up & deposit him in the garden, or maybe chuck him over the fence if the neighbours weren't there (because I've never done that before, as if) By the time I came back, spider gone....great. Visions of me asleep with little dude crawling on my face...Hell. Has this scene been in a movie yet?

As promised, when I wasn't spider distracted, I dug through my photo stash, here is one I think you want to see...

wearing a condom suit my co-worker made, strolling around Swinburne Prahran campus in the late 90s, it was important education! Free prophylactics in the bag. Check out my banana....

 

For the gardeners, here is an update on the orchids, and a camellia. It's a really nice time of year. The plants keep me happy. I think I like to nurture. People too. Not so sure about spiders.

there's something about the symmetry I find appealing. Never mind the curry powder on the leaves, I find hurling curry powder over the plants tends to keep the possums from eating everything in sight. The neighbours see (and smell) me throwing curry powder around and think I need a straitjacket😁

Aug 21, round 3, it's a knockout

view from my hospital room this morning

Today was my 3rd dose of chemo, end of first cycle. Rest week next week! Nice early 8am start. "How late can I be?" I asked the admissions clerk. It was 7.59. I may as well test the boundaries. "No more than 10 minutes, otherwise we ring you" Dammit. Pod 29 today. Obviously the one to have, check the view, city skyline in the distance (looking north from Cabrini) That Norfolk Island Pine I estimate to be 7 stories high. What a shame it will be when the lightning hits it one day. I remember a tree like that near my old place with an eagles nest at the top, I used to watch them through binoculars.

It was a little bit different today, one because a cousin had a day off and came sat with me, (many have offered but I refuse to allow them to miss work) so the time passed quickly, and you all know how full of shit I am, poor guy's ears must have hurt after a while...but thanks, it was really appreciated; and two, my cell counts were low (neutrophils 0.8) so I only got one of my drugs, the nab-paclitaxel, but not the gemcitabine. Oncologist says its because the drug is hanging around and doesnt need to be boosted. Its protocol. Yeaaahhh...OK. Not sure I completely buy that but anyway. So the morning went quickly, and soon I was home, where I was overwhelmed by fatigue, so had to take a nap. Then again, I might just be super lazy. I cant really complain too much about side effects - ongoing bleeding nose, sore gums (so its hard to chew, I have to limit to soft foods, as I eye that packet of chips in the pantry, soon my precious, soon...) C'est la vie.

Oh I must mention, yesterday I went to the "wellness center" for my 1st session of oncology rehab. Run by exercise physiologists I labelled the two Laurens. They were super nice, and turns out both were ex Deakin students, so we reminisced. "Don't work me too hard" I pleaded. "Oh no, we'll go easy on you...this week" they reply with a glint in the eye. Oh my. I have never been to a gym in my life. It wasnt too bad after all, and besides, I was the youngest in the group by about 20 years. A bit of cycling, treadmill, few weight machines, yoga stretches, ball work - done. The funniest thing was they had to show me how to use the machines, because I was clueless. I had to laugh. Then we had a lecture presented by the OT on relaxation techniques. She had a Monash student with her who I swear looked younger than my 16 year old niece. Still, it was useful.

Now, an aside. One of my friends (thanks Anne) found a picture from our Monash days, maybe a decade ago - me and Victor, dressed up for "talk like a pirate" day. Its motivated me to hunt at home to see if I have any other photos to share, so stay tuned... The most amusing thing is, that over time, I am going to start looking more and more like Victor! Twins! LOL. 

 

Aug 16, visiting the wellness center

I feel weird today. Don't know if its because of my visit to hospital or just a chemo effect. 

I had an appointment at the "wellness center" this morning. My first clue was that I wanted to drive rather than walk, but maybe it was just because the weather turned funny. Then I deviously used my dad's disabled parking permit (to extend my time in a normal parking bay on the street) Please don't judge me, I know I am so going to rot in Hell for my deception. I mean its clearly written on the permit - only for use in transporting the permit holder - well dad was safely in his armchair at home - but I felt that maybe crappy chemo justified just a little bit of ummm, wiggle room...

Anyway, I had my physiotherapy assessment, I did Ok if I say so myself. What surprised me was 16% body fat, I thought I would have more than that. I suppose 18kg weight loss since last year would account for some of that, it really has been quite stable recently though. Possibly my daily walks are helping as well. I start a program next week, 2 days a week, let's see if I am so smug then...

Afterwards I had a mandatory session with the social worker. The discussion became quite heavy, about voluntary assisted dying, my wishes around church and funeral arrangements (in her defense, I had ticked these topics for discussion, it wasn't like the poor lady sprung it on me) my guilt at what I am putting my parents and family through. Needless to say I cried. And of course the mandatory discussions about worry, sleep disturbance etc You get the idea. Best to put some thought into these things now. It was an emotionally draining session.

One interesting thing, NDIS doesnt get involved in palliative care, only if there is a disability whatever the cause. Sort of surprised me, worth exploring a bit, I imagine loss of mobility because one is bed bound would count as a disability. I am not up to considering this today though.

I dropped by my parents for lunch on the way home. Naturally I did not confess my crime from earlier in the day! Then I am afraid I flaked out at home. I just felt so lethargic, I couldn't get my lazy ass off the couch, snoozed most of the afternoon. Must be the post chemo fatigue they warned me about. Of course.

Now, off topic, here is a picture of Lorraine Lee, also known as the winter flowering rose. She is pretty hardy, easy to grow, just don't crowd her so the air can circulate or she will get mildew. No smell sadly. However, she has given me a lot of pleasure this time of year. And yes, I know I am just showing off...

Aug 14 round two, ding ding

I got home safely, here's another orchid to celebrate

For my second infusion, I got a city view. Quite pleasant really, looking out the window, part of the city skyline, framed by a stately Norfolk Island pine tree, morning sun lighting up its branches. Much more pleasant than thinking about what was going into my arm. I am writing this to pass the time while the drip is going.

I was a bit naughty today. As usual I walked to the hospital. Almost didn't make it. There I was, halfway across the road, T intersection, sububan street, when a middle aged gent driving an expensive car, came tearing around the corner, didn't slow down, missed me by centimetres, pushed back a bit by the wind shear of the car passing "Oi, moron!" I yelled and gave him the finger. By this time I was dust in his rear view mirror. Thinking about it, he almost did me a favour, had he bowled me over, with my anticoagulation, I would have bled out, end of story. Nice and quick. Isn't fate a funny thing? Would have saved me a lot of hassle, including mulling over euthanasia..for later. My goodness how morbid. Focus. Back to the present. 

Anyway, what I was going to say, I am planning to do a runner at the end of this session. For my other admissions, I had to have someone take me home, and they checked this was the case, not so up here. I was free to go last time. So I haven't arranged a pickup. I feel bad imposing, I mean people taking time off work to haul my sorry ass around. Yes, I know it's done willingly and with love, and I am ever so grateful, but still, if it isn't necessary... So I'm going to walk back home this morning. What's the worst that could happen? I spew in someone's front garden? Fine, I'll aim for acid loving plants like azaleas...

Aug 08, so this is chemo...

one of my orchids, greeting the coming Spring, symbolizing (for me) hope, life and beauty

Today dawns sunny and windy, as if to blow my thoughts away. No such luck unfortunately. I'm scared of what the day might bring. It dawns on me, ever since I first became unwell, the day after Grand Final 2023 (and sadly, it wasn't due to excessive celebrations) today is the first day I am getting some actual treatment! Lots of tests, oh my goodness, up to pussy's bow in tests, fat lot of good they all did, but no actual treatment - until now. 

I sit in the waiting area on the 4th floor at Cabrini. Its quite high and an unobstructed view to the south horizon. I can see hills in the distance, due south. Huh? I figure out from google maps I am probably looking at Mt Martha and behind that at Arthur's Seat, they are exactly south of my current position. It brought back memories of the old chairlift at Arthur's Seat, we used to go during the summer when I was a teen. That old chairlift was such a wonder, an OHS disaster of course, essentially a swing seat with a bar. Wind in your hair, bumping along as the seat traversed the pylons, curling your toes so your thongs didn't fall onto the cars winding along the road below. And the view! They were the days...I was brought back to the present by the nurse calling my name

I was in pod 31 today. Its a big chemo ward! Recliner (no rocking or vibrating function - I looked) Apparently you can absorb these chemicals through the skin, so the nurses gowned up to connect me up, much like we do with the isolation patients (but they had a cool blue, not the putrid yellow gowns we have at work) Which explains all the toileting precautions they went through with me yesterday on the phone. They put the drip in the back of my hand "we have to conserve the higher up veins for future use'' oh, I see. Flush, bolus premed (dexamethasone + antinauseant I didn't catch the name of) then infusion 1, flush, infusion 2, (which stung- so much I was rubbing my wrist to help with the pain - the nurses watching me like a hawk - worried about allergic reaction, "are you scratching?" "No" I reply meekly...) More flushing after it had gone through. The whole thing took about 2 hours. 

Luckily they had given me a whole truckload of pamphlets from the anti-cancer council which helped me pass the time. What caught my attention was the dietary restrictions - because of the white cell count drop, not being able to fight bacteria, I was not to eat deli meats (turkey, ham etc) or soft cheeses, including feta. Wait, what? No Feta? I'm a wog for crying out loud, you may as well deny me air!!! Thank goodness olives weren't on the banned list, I may have pulled the drip out and stormed out. How am i going to get through the next 3 months on pecorino alone? Woe is me... 

So, I am home now, despite my mum's protests that I should stay with them. I feel Ok. It's only been a few hours and I am waiting to hit the wall. I even ate! We'll see what the night and tomorrow bring. It might be prudent to sleep with a bucket by my bed...

 

Aug 07 day before chemo

 I have decided to become an airhead, the less I think, the better I feel. 

The weather today felt like spring was just around the corner, that definite "its getting warmer" feeling, nice and sunny. I took the opportunity to mow the lawn (I mean there's no point in having the place look like it's a squatters abode - thanks to my neighbour for that quip) a bit of trimming, and my very own version of chemo - sprayed the path and weeds with Slasher (an organic alternative to glyphosate, but, you know, as with all things organic, it doesn't really work anywhere near as well as the item it replaces) Take that you nasty weeds! Take that you nasty Universe! Take that!

This afternoon, I got my induction call from the ward nurse. To educate me about procedures, side effects to expect, what services are available to assist me (ie social work) and what to do in certain scenarios - that sort of thing. She sounded really young and bubbly. Lets just say that doesn't work for me. I wont go into all the details, but what was fascinating, and I hadn't actually considered this before, is that all my body fluids would be considered toxic. She said to make sure I sit on the toilet for all activities, so that I wouldn't get pee all over the walls (really, that happens? umm guys?) If I vomit, if someone has to clean that up they should wear gloves, and any soiled clothing / towels should be washed separately to anyone else's in the household. Twice. (Lucky for me I don't have any household slaves, so that shouldn't be a problem) And finally, the piece de resistance - to make sure I and the other party use protection when having sex, including oral. FFS, I really think the last thing on my mind while I am trying not to spew, will be a roll in the hay. I thought it was funny. A hell of a lot of assumptions here. 

Tomorrow morning I need to duck out and buy a thermometer. Apparently I need to keep an eye on my temperature as an early warning for infection. So far, the back of my hand on my forehead has been my thermometer. But it may be prudent to do it their way, apparently my temperature last hospital admission was 39, and I felt fine, just a little bit cold which I attributed to the open hospital gown....

Aug 01 liver joins the party

I am in hospital. 

Again 

In recovery area following liver biopsy. Not an experience I recommend. Standard procedure, we know the drill now, top off, sexy hospital gown on, drip inserted, identity check every step of the way.

Rolled into the CT room, they tape a plastic grid over your tummy, so they can mark where they put the guide. Into the machine, the initial scan taken, the skin marked, the plastic grid removed. Bit of local, (it has always struck me as ironic that the medicine designed to relieve pain stings like buggery). At this point I tuned out. The guide. I couldn't look. Essentially a cylinder to guide the biopsy needle. Stuck in my belly like an oil well. Except it was drilling for something else. 

Then the actual fun begins. The radiologist in lead gear, adjusting the direction of the needle, giving instructions in his musical South African accent (which I quite like) then click, a pressure and a biopsy is taken. This happened again and again and again...by the 6th I had begun to sweat and felt like passing out, despite the fact I was already lying down. What a wuss.

I didn't think I was in pain, but another dose of anaesthetic did the trick and I breezed through the next few biopsies. Then we're done. Lie flat for an hour, hope you don't bleed, roll out the door home on your mind

It's interesting seeing it from this side of the fence. Everyone is pleasant and concerned,and ever so helpful. I lap it up of course. Demand this, demand that...I can see I'm going to turn into a monster. 

Let's hope all this leads to some meaningful tissue and a treatment pathway. I can but hope.