84. Zoledronic Acid Infusion #2

It took Centrelink 159 days to approve my Disability Support Pension.  When I lodged it the computer said the average time of approval is 45 days.  I actually found out the day before as I was looking in my bank account for another reason, there was a random $71.20 payment from Centrelink.  I looked on the Centrelink app and it said my next payment was going to be $3,448.55.  It didn’t say what it was so I logged into MyGov and sure enough, it had DSP next to it.  The next day, 23/04/24 I got a text message saying there was a message in my MyGov inbox and there was two messages.  One saying Jobseeker had been cancelled and one saying DSP approved and I was receiving back pay to the 17th November 2023 when I first lodged.  I could literally feel a weight melt away off my bodty and I physically sat up straighter.  I am now no longer living below the poverty line, just above, but much better than way below like previously.  

I have been looking for work (working remotely and part time preferred) and applied for a 3rd job (the other two were - haven’t heard back and a no) with HomeInstead for the Illawarra and Wollongong area.  I had received an email from Seek saying that HomeInstead had viewed my profile and would like me to apply for the Case Manager - Home Care Package job.  So I did that on the 4th of May.  A couple of days later I got a missed call on my phone from a Wollongong number.  It was strange as I had my phone in my hand and it didn’t ring.  I then got a text message saying that Julie from HomeInstead had tried to ring and if I was interested in the job to ring back before the close of business.  Well, the phone call was 4.27pm, the text message was 4.29pm and I called back at 4.32pm.  The lady on reception put me on hold and then said that Julie was leaving for the day and she will call me tomorrow.  I said that was fine, I had an appointment from 12.00pm to 1.00pm so anytime outside of that is fine.  At 1.30pm I send a reply text to Julie saying I was done with my appointment (It was my exercise class and I needed a shower afterwards) and so could call anytime.  Nothing.  I wondered if she had gone home sick and so wasn’t working.  I decided that if I hadn’t heard by Monday I would call again.  On Friday afternoon I got an email from Seek again that said “Unlikely to progress further” and that 28 people had applied for the position.  Ok, so that’s a no I’m guessing.  I felt it was strange that I never got anymore contact from anyone from HomeInstead but hey, at least I know my Seek profile can be looked at and people know what I am looking for in a job.  I’ll keep looking and applying as I would like to get a bit of work and start to try and feel like a productive human being again.

The last few weeks have been up and down as usual, some days have been quite bad with aches and pains and I can’t link it to anything like bad sleep or anything I’ve done specifically.  I got the stitches out from the Quasimodo scar on 30/04 by the nurse and then waited over an hour to see the Dermatologist for the results of the pathology report.  She said “Do you want the good news or the bad news first?” after she had taken a minutes to read through the report.  I said it didn’t matter which and so she says “Good news is there were no malignant cells found, bad news is that it was a ruptured cyst and so the margins weren’t clear and so it could grow back and then there is a slightly bigger chance it could turn malignant so you’ll probably need to get it out again.”  I asked her could it have been ruptured with the biopsy needle and she said unlikely and that when it was inflamed back in January when I had covid that it was probably then that it was ruptured a week or so prior.  She told me to be a bit careful with moving my arm in a way that would pull the 5 inside stitches apart and they will take about another month or so to dissolve.  “Sometimes,” she mentions as an afterthought, “people’s body rejects the stitches and they can appear on the surface of the skin.”  I told her that one of my boob stitches did that.  One out of the hundreds that I had then.  I don’t need to see her again unless there is an issue with the scar and she would like to check my skin for skin cancers in 2 years time.  She says my skin over all is very well looked after.  

That same afternoon I had my 11th Zoladex inject at the GP.   The left side if anyone is wondering.  I like to alternate sides but it doesn’t matter that much.  She had the cardiologist report and all is pretty much ok except for a “slight autonomic dysfunction” which means the nerves regulating my heart are a bit on the wonky side.  It isn’t serious and I’m doing everything he would suggest to treat it.  Eat well, stay hydrated, exercise regularly and sleep well.  That last one I still struggle with and on Monday I saw my radiation oncologist and she mentioned I could try melatonin and see what that does.  I’ve put it on my list to talk about with my GP.  She can write me a script.  You can just buy over the counter if under 55 years old you can have a script and get it at PBS prices.  I also checked with my GP whilst I was there if my lungs sounded ok.  There had been hazard reduction burning going on around us and the smoke was terrible and thick. I had to close my room up and put the air con on as I couldn’t breathe.  My eyes also were not liking it.  I developed a cough and my chest hurt and was tight. I remembered last year I ended up with a chest infection when they were burning off and two rounds of antibiotics.  My GP said that my chest sounded ok and by the time I had seen her my chest didn’t feel tight anymore and I’d stopped coughing up brown/yellow gunk like I had been.  She said if it gets tight again or I get a fever or felt worse to come back and see her.  

I saw Alexandra the dietitian a couple of weeks ago, who was at the breast cancer support group a couple of months ago.  I had done up a week food diary before I went and she was quite happy with what I was eating but had a few suggestions.  5 servings of fish or seafood a week. It will help with joint lubrication and pain from the osteoarthritis.  More dairy because the Letrazole tablets leach calcium from the bones.  You can get calcium from other places but the quickest was with dairy for me with the trauma by body has gone through and continues to be under with the hormone therapy.  She said if I can make chia pots with organic full cream milk that would be better than coconut milk like I had made.  If my tummy gets funny or I get the 💩 then to try lactose free milk.  Even though I have super strong bones from my bone scan last year so said that until I have my 2nd scan no one will know how much or how fast the Letrazole is affecting my bones.   My snacks were ok but I needed more carbs than I was having.  I have found a good bar that is just dates, cashews and cherries.  She said for me I should add a close fist of nuts to it and it would be perfect.  She said for her the bar would be fine but I’m a lot taller than her and have a lot more muscle mass as well.  She had gotten me to stand on a scale which took my weight, 127.1kg, and also gave a muscle and fat mass reading.  Not as good as the sozo machine that Restore uses but a good enough guide.  I asked her how many nuts was too many nuts and she said a closed fist per day is enough.  It has to be your own hand to measure, not a huge person with a huge hand!  I usually would have nuts on my fruit and yoghurt in the morning as well as a variety of seeds.  She says keep the seeds for breakfast and change the nuts to one of my snacks with dates or dried fruit.  I wasn’t eating enough protein at lunches.  For me she said 120g (that is raw meat weight, not protein amount) and to eat within 1 hour after a exercise.  For dinner it’s 150g-180g a raw meat weight.  That’s measurements for me, other people would have less or more depending on their body composition so don’t use that as a general guide.  She was happy that I wasn’t eating grains, legumes or refined sugar as she agreed that they can cause big inflammatory responses for some people.  She agreed with Jon Gamble’s assessment that my heart palpitations were almost certainly linked to blood sugar drops and stressing out my body.  I will see her again after I see the exercise physiologist, Brent, next week.  After his assessment he’ll have a more complete view of my body composition.  Alex and him are part of the same team so they’ll send each other reports.  

On Monday I saw my radiation oncologist and she was quite happy with how my scars look and feel and how good my mobility is.  She said they looked a bit dry and is happy with jojoba oil to be used on them. When she felt them though she realised they are just discoloured from the scaring from the radiation burns.  I did mention to her about my left collarbone sticking out more than it has been.  It sticks out the front more than the right side. It also aches and some exercises, like the high pull, I can’t do cos it grinds and aches.  She agreed it sits forward more and to mention it to my GP.  My list for her is getting longer.  I am wondering if there is some sort of scar tissue thing going on as it’s right where Persephone’s line was shoved under my skin and then joined into the vein up on that very collarbone.  I’ve already talked about the melatonin and she said she’ll see me again in November.  

Yesterday I had my 2nd zoledronic acid infusion.  I was a bit apprehensive as the 1st one knocked me out for a good 72 hours with major major aches and pains everywhere, I lost the strength in my hands and fingers. I couldn’t even hold my phone to send a text message.  My appointment was at 11am. I got there a few minutes before.  This was also in the new Cancer Care Clinic at Sutherland Hospital where I had been for the psychologist and radiation oncologist.  It’s called Bangawarra which is the Dharawal word means “Working together for a common cause/goal”.  I thought that was a great name for a cancer clinic.  The waiting room is actually a nice big room instead of a corridor with chairs in it like it was before.  After about 15 mins Jazz came and got me and asked when was my last blood test.  I didn’t know I was meant to have one and she said I should’ve had a blood form from the last time.  No matter, it would just means I’d be there for an hour extra.  Good thing I brought one of my craft projects along.  I had done some more fabric twine so I started making another bowl.  Jazz said all the chairs in the treatment area were full and so found a room that had a bunch of chairs, beds and other stuff stashed in it.  She put in a cannula, elbow of my left arm, and took bloods.  Marked them as urgent and sent them off.  I sat in the nice new waiting area and worked on the bowl.  Many people were interested and so it is a good conversation starter.  It was about an hour and a half by the time Sarah came and got me and said my bloods were back and they were fine.  I was weighed, 128.1kg, oxygen was 100%, temperature 36.5C and heart was 88 beats per minute.  She didn’t take my blood pressure because it should’ve been done before the cannula went in.  It was taken after it came out and it was 112/71.  The actual infusion takes about 20 mins and then a saline flush, 10 mins, so I was all done by 1.36pm once the cannula was out.  I did get a blood form this time to use before the 3rd infusion which is November 12th.  I had a slip of paper that said $7.70 (concession rate) and I had to pay at the cashier.  She was out for lunch and I hadn’t eaten so I went to the cafe and had some grilled fish and vegetables.   I paid and when I validated my parking ticket I was 7 mins over so it would’ve cost $6.50 but the parking lady knows me and had seen I had to wait for the cashier to come back from lunch so she said “don’t worry, just press the phone button and tell us it’s you at the gate and we’ll let you out for free.”  

The after effects of the infusion haven’t been as bad as last time.  Around 4.30pm my head started to feel funny like it did when on chemo but about 1/3 of the ickiness and the aching of the joints and muscles started to happen.  I went to bed and surfaced for some dinner at 7.30pm and then to bed again.  My jaw and teeth were really sore as well as my right ear this time.  Strange.  I took some pain killers to go to sleep, as the nurses recommended, and apart from waking up twice in the night I was ok enough to get up around 10.30am.  I still ache but not as bad and my hands, especially my right hand and thumb, are the worst.  I went to my Lewis class at noon and did a modified program so I didn’t have to hold or pull weights as much.  I did 7km on the bike at the end cos my right knee has been super stiff and sore since last Friday.  That’s my good knee so not happy about that!!!  The bike did help a bit and it isn’t as stiff. 

I was at the optometrist again recently.  He was happy that my left contact lens had settled in well and so made up a script for glasses to help correct the astigmatism.  The contacts are for the keratoconus.  The left eye just didn’t want to play well with the toric lens, which is the ones that also correct astigmatism, and so glasses it is as well.  Does that means I am an 6 eyed person?  My eyes, contacts and glasses?  Anyway, the right lens is pretty good and is a toric lens but needs a slight adjustment too but the glasses can take care of that.  I’ll mainly need them for computer work, playing the piano, singing at choir and playing recorder.  Driving and other day to day stuff is fine.  Sewing is fine too as I look out the bottom of my contacts.  He doesn’t think that would make a difference but it does!  The glasses will take a couple of weeks to come in so I won’t have them for this weekend when the choir I’m in will be performing at the Blacktown Medieval Fayre on Sat and Sun at 10am both mornings.  https://www.blacktown.nsw.gov.au/festival/Whats-on/Blacktown-City-Medieval-Fayre. Here is the info if anyone is interested.  I didn’t get to buy the frame that were called Dragon (It’s the year of the dragon) as they were $306.00 and didn’t come under the special discount that my optometrist said I could have.  I chose ones that were very similar and were $99.00.  My lenses though cost almost $300 as it is.  So, may contacts cost $750 each, plus glasses on top so yeah, my sight is worth a lot in money but much more in being able to function in life.  Though, if there wasn’t these options I would be eligible for the Blind Pension.  There are always options out there to help….even if they do take 159 days to be approved!!!