I’m sitting here, listening to the information I should be storing about palliative care, when my ears prick up at the talk of commodes. Maybe it’s because of my recent episode of having to use the toilet aid that made me pay attention, or maybe it’s just the injustice of the boringness of it all
The group is a varied one so of course it shows differing aids. I think it’s great that kids can have Pepper Pig, or Teenage Mutant Ninja Turtles, but why can’t adults have a bit of fun and joy in their life too?
Adults get boring stuff, plane stuff, because we obviously have to be serious and staid
I guess I will go on some online service and get some stickers to brighten up and make fancy.
Dare I say that kids get a better deal with disposable underwear. We have all seen the advertisements for pull ups with pictures on them suitable from a young age to a teenager. The minute you hit adult hood, its all about discrete, but no flare
I am thankful that I have access to such luxuries as these and I will have to ponder how to make the underwear more individual
After months of radiation therapy and chemotherapy, it is now time to see what the results are. I will be having tests over the next couple of weeks to see what that rascally brain tumour Charlotte is up to.
I was told from the get go with these treatments that if it all works it will buy me another, maybe 7 years, if not, well it will be a good bye soon enough
I have already had an MRI and CT scan. I hate any scan that involves lots of noise, so it’s a relief to get them out the way. But it is what it is and I have to suck it up and deal with it
It’s been a hard year on my veins, my poor arms quiver at the sight of a needle now days. So many needles going in the vein, either taking blood or pumping stuff in there. I can’t forget the arteries taking the chemo infusions
I’m still determined to not let Charlotte win, she is not going to ruin this year. So much crap has already happened this year, so I’m not going to be one more crappy thing happening
My curlews have come back again this year with two new babies.
Last year we had curlews visit us and stay in our yard after their eggs had hatched. They had had a next in the house over the road, but they didn’t like the curlews and didn’t believe in the laws protecting the birds and would hose them and throw things at them and they blocked off the area so the birds couldn’t return. The house next to them used to set on them with the garden blower. The birds had to come to our side of the street of safety and spent most of their time in our yard. We watched over them, and we had to intervene when one of the young was ill. We took him to the Green Cross vet and unfortunately the poor baby died.
This year the parents have come back with two new babies. They enjoy sitting in our yard and they are welcome on our side of the street. One of my neighbours isn’t at home anymore and most of the time his house is vacant, so they can sit in his front yard without harm.
Our other neighbour loves the birds and tries to lure them in all the time with food. But they are too smart for that, they take his food and high tail it out of there
I have to watch out in the morning as a few school kids have thrown rocks at them. People get scared when they hiss, if they think you are going near the babies. If you just keep going, the parents stop reacting and go back to the babies.
Last week I went out in the morning to see what was bothering the birds and a woman (white woman) was in my yard, taking photos of the curlews.
She then apologised for being in my yard, but said she wanted to take some photos of the emus. She continued on to ask me if I was breeding them for food.
I was so tempted to mess with this woman, but I decided to be a nice responsible person, and told her they weren’t emus but curlews.
World Radiography day is celebrated on the 8th of November, which marks the anniversary of the discovery of X-rays. The aim is to educate people into the uses of radiographic imaging and uses in treatment. The use of radiography in treating patients especially with cancer means less radiation in treatment, which of course is a bonus, when you are ill.
The theme this year is Radiologists and Radiographers supporting patients during COVID 19.
It is the perfect time to speak to someone in the field and ask about what it takes to work in this area. I know I would love to see more Indigenous faces. Think of what a change it will make to our health outcomes if we see more of our own working in this area, it would really make it less scary
So I have had the right side of my head moult and my eyebrows. But now I’m starting to have the light fuzz, baby hair grow back, even on my eyebrows.
Of course this is good, but the other side is starting to moult (left side) but not the eyebrows. I was hoping for it to all go and then grow back at the same time, so I wouldn’t look like a mangy dog. But I guess you don’t always get what you ask for
Totally first world problems, but it’s something I didn’t expect
I often wonder if I really make a difference. I know the sharing of stories is helping my people to learn more about cancer and it gives them an insight into the treatments. But sometimes I do wonder if I really make a difference
I was told today that I am making a difference to one person. That is enough for me to feel better and be revived into starting up writing more often. I had been a bit slack, but now I will try to be more diligent and post weekly, like I used to.
I’m yet again at the hospital and I’m going to share some more things that they have in the Daycare area. Don’t expect a sandpit.
The day always starts so early and involves so much waiting around and then when I finally get the infusion happening, it only takes 15 minutes. But it’s a small price to pay so that I can be around my kids longer. Someone has to annoy them, I mean keep them in their place.
Speaking of my kids, much as they are frustrating as all offspring are, no matter what age, they are there for me, to pick me up off the ground when I fall, take me to appointments and to treatment.
My local AMS, Yulu Burri Ba is a great service, I use them for transport to the hospital when my kids are unavailable. Through the Care Co-Ordination Program, I can see the Care Co-Ordination nurse when I have worries. She helps me with transport to medical appointments. It’s just such a wonderful back up and support for myself, and for anyone with a chronic disease.
So after being ill with hives and everything else that went along with it. The swollen joints, the swelling in the arms and legs, the constant vomiting and diarrhoea. I was so glad last week to feel well enough to walk around without the help of my trusty walker and to then be able to go to the toilet without having to use an old people toilet helper. I am now safely out of Depends.
If you think I should be ashamed of talking about this, think again. I had to wear depends and use a toilet assist years ago, when I had to relearn to walk and control my body. It’s the price of stay alive to be around my kids.
With my body healing I was able to go to treatment last week and get my infusion. It’s always a long day with a visit to the doctor first, sometimes more blood tests or scans then going into the Daycare to be treated by infusion. Not all nurses are good at putting a line in my arm, and some take so many tries that I’m ready to walk out.
But life goes on and sometimes you just get the nicest surprises from unexpected places. I received a lovely bunch of flowers from the team at Menzies. Thank you Gail Garvey and team, for making me feel happy.
I’ve been affected by all the wind blowing around the pollen and this time its been really bad.
Hives in your mouth and up your nose feel like little hedgehogs. But when my joints started to swell and I couldn’t walk, it became a night mare. I had one really bad night in bed where I couldn’t get to the toilet and I had an accident in my bathroom. My kids couldn’t get to me in time. The second accident same thing, and I ended up on the floor in a mess of urine and pain. My kids had to pick me up, put me in the shower and find some adult nappies for me.
We did used to have some from when I had to relearn to walk and actually relearn everything, but we couldn’t find any. So a quick trip down to the pharmacy and the we went into battle mode straight away.
The shower seat had not been put away because of chemo, so it was fine.
Then of course the nappies, so many to choose from. We needed more that a depend, because if I was unable to remove and help myself my kids would have to do it, or pay the neighbours.
We got the standard ones that you can rip down the side if you need to because they are the best. I know it’s not fun or nice talking about adult nappies, especially if it’s for a member of your family wearing them, but you really need to have a long look at all the kinds and styles and what fits best with what weight. It’s hard to pick, you need to go in with a list of the person weight, measurements, knowing a body type is helpful with how they sit. Also how thick are they between the legs, It might be cute to watch a bow legged toddler, its’ definitely not cute to do that to your mother or father.
You might think that I have gone overboard and should have waited a bit longer. But it’s about what makes me comfortable and having this in place means I don’t have to depend on my kids to get me to and from the toilet. I keep my mobility and I want to be able to move around as much as I possibly can.
By the second day I was enjoying my new found freedom and the biggest toddler on the street. It’s rather empowering to be able to just wear a T-shirt and nappy. Next, I’m off to fight the neighbourhood toddlers