37. Chemo IV and pro-bono legal help

Monday. Day before Chemo IV. I had an appointment with Paula at 9.30am and then afterwards I had to go get my pre chemo blood test. The lady at reception said it was going to be about a 40 min wait. I didn't mind as it was nice in the air con and it was another disgusting hot and humid day. However, it turned out that it was only about 10 mins. The girl who took it said my form must've snuck up to the top of the pile somehow. After that I went to Centrelink at Sutherland.

The Friday before each pay day (Monday - each fortnight) for Jobseeker I have to go onto the Centrelink app and report any earnings I may have had, even if it is zero. I did this on Friday morning but then when I checked on Monday if my payment had come through I noticed that there was $177.73 from Whiddon that had come through on Thursday last week. I know Centrelink is super strict about the reporting being correct so I didn't want to wait to check out how to fix it. The lady at reception was the same as last time but not as grumpy. Maybe she just needs more time to wake up in the mornings like I do. She said there was going to be a 45min to an hour wait. I said I had an appointment and would need to leave by 12.30pm. I sat down and a lady from Hearing Australia wanted to know if I had time for a free hearing test. Ok, why not. Hearing is ok but I do have wax that needs to be removed. Just after midday the lady at the front desk said things were backing up and she'll help me so I could get to my appointment. After I explained what had happened, that I hadn't been expecting any pay and that when the contract with Whiddon was cancelled I must've gotten paid out for the little annual leave I had accrued over my 5 shifts. She fixed it up in about 10 mins and said that it won't affect my payment but it was good to get these things fixed asap.

My appointment I had was my exercise class with Lewis. I felt about 90% ok, maybe a bit higher. Decided not to do the stationary bike this time around, even though Lewis thought we could try me doing a "hill climb", as in standing up and peddling, but that just hurt my left knee a bit. Next time I might try the cross trainer instead. I was able to go up to 6kg weights for the skull crushes and doing push ups on the wall I don't have to take a breather between each 3 or 4 push ups. We did the nuttbush again, twice. It sure does work the bum and hips! I'll go to my class tomorrow (Friday) but as I'll probably be only feeling about 40% or so it'll be back to lighter weights and being less vigourous.

Tuesday. Chemo day. Appointment was 9am. 140.6kg, 36.1c, 122/73 bp, 98% O2, bloods all good. I choose a chair near the window so I could get some good light for hexagon sewing. I'm sitting next to Gary again. He tells me the wooden sailboat he is making is coming along well and he should be able to get the sails on this week. The boat is a bit less than a metre long. I get given the $100 anti nausea pill and then wait for a bit while that settles. I have to wait an hour before the 'push', the syringes that looks like cranberry juice, or raspberry cordial. Persephone isn't allowed to be used so it's a cannula again in my left arm. Nurse Mocs puts it in, but needs to put a hot towel on my arm to get a nice vein showing. I've ended up with a bruise a bit larger than 50c piece but not quite as stark and bold as the bruise from 2 weeks ago. She also reads the final report fro Persephone's x-ray and says that there is also indication of a fibrin sheath. So I don't do things by half, I do both! She says that before Chemo V (on March 14th) they will push some medication down Persephone and it'll take about 2 hours and it should dissolve the fibrin sheath. It's like a scab that forms around the tube. Here's hoping that will help and I can use Persephone for the next 12 chemos. Ports are meant to make things easier!!!

Mocs does the push and I feel like I can small and taste it already. It's gross. To me it's like rotten pineapple, stinky feet and metallic. Iced water helps diminish the taste a little bit. I have a 1.2L insulated water bottle I carry with me and fill it half with ice and half water. After the push there is an hour for the 2nd chemo drug which is in a bag and just goes through the cannula itself and then a flush through of saline that takes around 15 mins or so. I was done by 11.45am and headed home.

I had some lunch, get a decent meal in before I don't feel like eating for 3-4 days or so. By around 1.30pm my head is starting to get the spacey weird feeling it gets. I go and lie down in my cool air con room. I can feel myself wanting to doze off so I take my contacts out. Don't want to fall asleep with them in like I did a couple of weeks ago. They get all sticky and dry and it's BAD for my eyes.

Around 3.30pm I get a call from Angelique at the Cancer Council. Ross had put a referral in for pro-bono legal aid for me as I want to set up a Will, Enduring Guardianship and Power of Attorney. She asks me some questions about finances, job, study, superannuation etc etc. She then says that someone is available to check if I'm eligible for the service. She puts me on hold for a couple of minutes and then says that I am and if I feel ok and have the time she can put me through to Juliette. I say that is fine. Juliette asks a few more questions, in more depth and then asks me to name who I would like to be on the legal documents. This is something I had discussed with my sisters at the lunch we had so gave her their names. Juliette says that she will be sending the details off to the list of lawyers who volunteer their services and someone will contact me in a couple of weeks for an appointment. More appointments for the calendar but the legal stuff is very important and I have been meaning to do this for at least two years if not longer. I just didn't have the money for the lawyer being on AuStudy. Living below the poverty line is difficult and challenging and I wish that every politician had to do it for at least 6 months without access to any of their own wealth and in a rental. That would surely make them realise how hard it is and then I would hope make sure that people who are looking for work or are on disability or some other government help would have enough money to survive. I could go on about the stupidity of a system that entrenches inequality and poverty, especially for minorities, and how it is bad for society overall, but I don't have the energy for that today.

I had a phone call from Jewelz, she used to come to choir. It was good to catch up and chat. Maybe towards the end of March we can meet up. I also had a nice long chat with Melinda. It's easier to talk than type when I have a chemo head. The brain doesn't work that fast, especially the first couple of days. Also, I didn't have my contacts in, and that makes it all the more difficult.

Wednesday - I dropped Mither and Pither off at Sutho train station. They are heading to Canberra to visit with Uncle John and Aunty Sylvia (Pither's sister). They'll be gone until Friday around dinner time. While they are gone I left some house keys with Lewis. Just in case I get sick and need some extra help quick, or have to call an ambulance and can't open the front door. Plan for the worst and hope it's not needed. I did get to the shops to fill my fruit bowl and a couple of other things. By the time I got home I was really tired and binge watched Black Sails on Netflix for the afternoon. After a few hours I felt a bit better and able to sit up so I did about an hour of more hexagons. With the ones I did at chemo and yesterday I had added 94 more to my tally. I have a box I'm filling up and when it's full I'll give them all a count and see how much closer to 6,080 I am.

Thursday - today. Taking it slow today. I'll go to choir practice tonight if I'm feeling up to it. I should be ok but you never know. Time to lie down again, Just being vertical for a couple of hours is enough this morning. Time to be horizontal again.