Tag Archives: my story

Sunday 19 April 2026…

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Sunday is a quiet day here in hospital.

This morning it rained and the first thing I knew about it was the droplets of water from the window.

The cannula in my right wrist, as that was the only place the nurse on Friday could find a good vein, that gave up the ghost this morning and had to be removed and a new one is in the crook of my right elbow. Neither are ideal places to insert a cannula as they were inserted in a joint but you got to go where there is good vein access. I absolutely refuse to have needles and cannula’s inserted into the back of my hands and I don’t care how good my veins are there as they are my no go areas. Being in my 50’s, I’ve gotten “old lady hands” and the skin is thinning there. The last time a doctor inserted a cannula in the back of my hand, while I was in hospital last year at Flinders Hospital, it hurt like you wouldn’t believe and it didn’t last, the vein blew, so no thank you, we are not going through that again.

Antibiotics, Frusomide, is still needed, so it’s all the good things through the cannula, rather than tablets.

Watched the church service from Waypoint Uniting Parafield Gardens this morning online. It was a great service. I wish the pastor Barry, and his wife Kelly, a well deserved break as Barry goes on long overdue long service leave until July. He was meant to go on long service leave back in 2020 but then Covid appeared and no one was going anywhere except from one room to another in our homes.

Had a rubbish night sleep last night after falling asleep around 10pm and waking up at 1 something and not being able to fall asleep again, so an afternoon nap was what I needed and I had a good afternoon nap.

I hope for a better night of sleep tonight. 

Until next time

Kaye

Saturday 18 April 2026…

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I’m back on the Frusomide injections to help pee out the fluid that’s still in my legs.

The intravenous antibiotics are for the legs only as the other infections that were possibly starting, now have been settled from all the intravenous antibiotics I received yesterday as they got onto it so quickly.

Feeling very gassy today from all the reflux, not a pleasurable experience. Good thing a doctor has charted for me Gaviscon to have as needed.

Visitors today were a life long friend… a sister from another sister, a friend from church, two of my cousin’s and an Aunty. Thank you for the visit everyone!

I’ve started writing in a notebook all the things the executors of my will, the things they will need to know when the time comes. I want to make their life as easy as possible in seeing to my wishes and not play a guessing game.

Being a Saturday, hospital life is quieter, you know it’s the weekend.

Today I have been injected with Frusomide to pee out excess fluid and when that hits, it hits. Antibiotics for the leg infection, blood thinners in the morning and evening, I joke that one day I will go to drink something and leak through all the injection holes haha.

Getting ready to watch the Adelaide Crows play tonight on TV.

One of the treats I am enjoying though is my cup of Milo at supper time. So good.

Until next time

Kaye

Just rolling with it all…

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While talking with one of my Doctor’s from my medical team, when you hear the words, “palliative treatment”, you know that there are no options for any operations to prolong life as your body with all its pre-existing serious medical conditions wouldn’t tolerate it. Then when you get informed that you only have months to live, that is something else but you know what? I’m at peace with all that. I could be all woe is me, why me? and all the rest of it but it doesn’t change the final result. So I make the choice of just taking each new day I have and enjoy the life I have left, the best I can.

Last night, I couldn’t sleep, too many thoughts going through my head as my brain was catching up and recapping everything that has been overloading it these last two weeks. Then I thought about who I can leave things to? I thought about life, God, things I may still want to cross off my bucket list. I even thought about funerals and what I would like to have… nothing over the top, just something simple with maybe a cremation and my ashes spread somewhere I love. So many thoughts were rattling around in my mind.

This morning, I had 2 former workmates visiting me. That was a good catch up, even if it was interrupted by the physio wanting me to do my little walk and a few leg exercises.

This afternoon was supposed to be a biopsy on my thyroid as the recent ultrasound had shown a nodule in my left side which needed further investigation to determine if it is something new, connected with the existing cancer, or nothing to worry about at all. For this to happen, they need someone from pathology there to see the biopsy happen in real time to ensure that there has been enough of a sample taken, by jabbing a thin needle in the neck and taking the sample with the needle but there was a miscommunication between departments and I was bumped until tomorrow as they had overbooked 3 different patients for a 2pm biopsy. I said that I don’t like needles, I’m currently a black and blue pin cushion right now being on a high dose of blood thinning injections as I’ve had blood clots in the past and am on blood thinners for the rest of my life as it is. So they decided to only do the biopsy once as I’m needlephobic. So tomorrow, it is.

Just had one of my wonderful doctor’s from the hospital visit me on her way home as she has been trying for over a week to get a hospital psychologist to come and see me and have a talk with me as she knows I’ve had a pretty tough 3 years with my medical conditions alone and they keep bumping me. It seems, and I do understand this, I really do, it’s the fact that I’m not thinking about doing myself in, they won’t prioritise. She assured me that a psychologist will see me at the end of the week as she is advocating for me and everything I’m going through doesn’t make it any less to deal with.

This afternoon, I had a visit from a couple of former neighbours who are full of faith for God and at the end of their visit, they prayed for me. Blessings to them both.

Time to get the things done, like organise a will. I asked 3 of my cousin’s if they would be executor’s of my will and told them to think it over as it is a huge responsibility. It also gives me time to think who gets what, what gets donated to charity and those kind of things that need to be thought about.

Time for me to organise my thoughts.

Until next time

Kaye

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This morning at breakfast time, the team from the Colon/Rectal team came to see me.

I’m now on the Low Residue Diet which is a low fibre diet which will allow me to pass number 2’s as soft “goop” considering that the mass in my bowel is blocking a lot of the bowel, preventing me from doing normal number 2’s. Sorry for the TMI but not sorry haha. It’s wonderful to be able to eat real food again though after being on a clear fluid diet for over a week with only having very salty broth… choice of chicken, beef or vegetable broth to drink, apple juice and jelly… lime, strawberry or orange.

I have been referred to the Oncology Team now for treatment, chemo, as any surgery options are considered too risky because of where the mass is and because I have weak spots in my bowel, they don’t want to perforate and create more issues, treatment is really my only option. I just need to build up my strength first to be able to cope with the chemo.

I spoke to a doctor yesterday who recommended that if in worst case scenario happens, I will not be resuscitated as my other health issues won’t stand up to it, nor if they have to tube me. I understand their reasoning and I made the choice that in the worst case scenario, do not resuscitate me.

Had an OT assessment this morning for the things I may need for helping with showering, toileting, getting dressed. Lily, the OT did tell me that even though the hospital is looking into getting me onto the NDIS, with all my health issues, I may not still be considered to be disabled enough to be eligible for NDIS. Something which I had thought of myself after doing my own research as my other serious health issues aren’t covered by NDIS.

Dr Litwin and his team, including students, as he quizzed them during the visit about why they take stool samples… to make sure nothing else is going on… he is taking me off the IV antibiotics I have been on for the cellulitis in my right leg and for my bowel infection.

The next thing Dr Litwin has to do is work out where I am going to from here and my discharge from hospital.

A cousin visited today and it was wonderful catching up with her.

The doctor’s have stopped my IV antibiotics as they feel that after a week, I’ve had enough antibiotics in me as it is making my poop turn into liquid. They were going to stop the antibiotics because they knew it would affect the gut health, which they didn’t want to do, so they switched it to a tablet antibiotics.

It’s early evening and as I settle down for the night, I write this as much as a journal for myself and for those who take the time to read these posts. It’s one way for me to keep track of the things I want to keep track of in this whole new and different world that I’m in.

Until next time

Kaye

Christmas time memories…

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This Christmas I was reflecting on the family tradition of lunch on Christmas Day.

It is a day when everyone who is available on my Dad’s side of the family comes together and celebrates Christmas.

The tradition started before I was even born as out of my cousin’s, I’m the third youngest but this tradition has been going for over 60 years with my older cousin’s.

When I was born, we’d go see my Mum’s family for Christmas lunch and then go to my Dad’s parents, my Grandparents house, for Christmas Dinner, which was always a bbq cooked by Grandpa and being Australia, we would eat outside in the backyard and then after eating some Christmas pudding (Grandpa would put sixpences in the pudding too) and custard, we’d even get a bottle of Coke from Grandpa to drink in glass bottles, not plastic bottles like now and you needed a bottle cap opener because there was no screw top cap. After we had our bottles of Coke, my cousin’s and I would go for a walk around the area and wish everyone we saw a Merry Christmas and Happy New Year as we walked the streets going to one of the many playgrounds in the area. Thank you Daylight Savings time as well for the play time at the playground!

As time went on and Grandpa and Grandma got too old to host the family Christmas Dinner, an Aunty and Uncle took over. They only lived 3 doors down from my Grandparents home, which was convenient as their fridge was used to store some of the food to be eaten on Christmas Day.

As the years have gone by, the family Christmas Dinner has now become the family Christmas lunch with everyone who is available comes for lunch.

My Uncle and Aunty, they hosted all of us for Christmas Dinner, which one year turned into Christmas lunch and from that Christmas to now, it has remained Christmas Day lunch, for many years before my Aunty decided she had enough and felt someone else should take it over.

Another Uncle and Aunty, they hosted all of us for 3 Christmas Day lunches before one of my cousin’s said they will hold Christmas lunch at their house.

So now Christmas lunch is rotated around the homes of 3 of my cousin’s as they have the indoor space and backyard space to have us all there.

When my second cousin’s were born, that started new traditions in the family as they grew and embraced what is family Christmas lunch and now they are adults, I hope they continue keeping the lunch as a tradition, especially when they meat future partners and start having children of their own.

Over the last 53 years, the time I have been alive, we’ve had loved one’s pass away, there has been family breakdowns and family separations where some members of the family no longer come to family Christmas lunch but I still think about every single person not there joining us.

I think about the people who have passed away; Grandpa and Grandma, both my parents, 2 of my aunties – one of them passed away earlier this year and this is the first Christmas without her, a “cousin in law”. I think about those who don’t come to Christmas lunch even though they have a long standing invitation but don’t join in – family breakdowns can be a bitch but in this situation, I completely understand why and I hope all the people involved are happy with their chosen families, that’s all I ask for.

On Christmas Day, I love cracking open a bon bon to read the bad jokes, wear the paper hat and see what crap toy there is. I love eating Christmas pudding with custard and ice cream, I love singing along to the music playing as we gather and getting into a singing war with who can sing a song better, my cousin’s and I or the younger generation, especially the song, Do they Know it’s Christmas?

I remember when my Aunty and Uncle took over from Grandpa and Grandma having the family at their house for Christmas Dinner and all the cousins, we’d be in my cousin’s bedroom singing along with the songs playing loudly on her record player. Do they Know It’s Christmas? was a favourite when it first was released all those years ago and we cousin’s sang it loudly.  Sorry Next Gen Cousins but we’re always going to sing that song better than you ever will!

I hope that when my cousin’s and I are no longer around, that their kids and future generations keep the tradition of Christmas family lunch going and I know they will because they are tight and best friends.

What family traditions do you have at Christmas time? Let me know in the comments.

Merry Christmas everyone from my family to yours.

Until next time

Kaye x

Making the most out of it…

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Recently I had to do a sleep study… I had no actual symptoms but the doctor I see thought it would be a good idea after I marked high as a candidate for sleep apnoea on a check list… the questions asked could have covered basically anyone as having sleep apnoea as most people would fit into the categories asked but hey, the questionnaire said I had symptoms of sleep apnoea, so I had to undergo a sleep study.

I saw the sleep specialist a couple of weeks after being referred by the GP and they arranged for me to take an at home sleep study. I booked a date and time to pick up a sleep study kit for the at home sleep study.

The day of the sleep study, I went to the medical centre and picked up the kit and took it home.

That night, I followed the instructions on how to place all the wires and electrodes on my body before going to bed. I looked and felt like a lab rat once all the wires, electrodes and electronic devices were attached and ready to collect the data from my night of sleep.

I am no stranger in doing a sleep study as I’ve done one previously a few years ago, a hospital sleep study, which involved a night sleeping on the narrowest and hardest hospital bed I think that they could find for me to sleep on. There were more wires and electrodes attached that time and the wires were connected to a bigger box I had to wear but the memory is still in my mind like it was yesterday.

The following morning before 9am, I had to return the sleep study kit back to the sleep specialist centre, then wait for the results which were given several days later by the sleep specialist.

At the appointment with the sleep specialist, I was diagnosed with having severe sleep apnoea and I would need to have a CPAP machine. Oh joy… not.

I then had to book another appointment with another person who would help me choose a suitable face mask and CPAP machine for me to use.

I went home with a CPAP machine, an Airsense 10 Autoset and a full face mask. The first night using the face mask, a Resmed Airfit F20, I couldn’t stand it… I couldn’t stand the air blowing straight on my face, the feel of the full face mask on my face. That night was a interrupted night of sleep. In fact, I hated the mask so much, I took it off, turned off the machine in the very early hours of the morning and left it off to sleep.

That first night while struggling to get used to the machine and battling with the full face mask, which was a losing battle, I thought of giving my machine a name as something fun. Since this machine was going to be my new sleeping companion I have to sleep with, I had better get used to it. I also decided that the machine was a He as well as it looks like a male. After much thought, not really, I came up with the name “Colin” for my CPAP machine… call me weird for naming a machine if you must… but Colin is named after the inventor of the CPAP machine, an Australian by the name of Colin Sullivan in 1980, a fitting name I thought. Here’s the funny thing, now I can talk about Colin, my machine and have people think he’s my partner haha.

After having a word with the company I obtained the CPAP machine from, they provided me with 3 other masks to try in the hopes that one of them is more suitable for me.

The face mask I have been using is a nasal pillow which just sits under the nose, which is perfect for me as it’s not a full face mask, I don’t have air blowing on my face and I’m not feeling as though I’m suffocating. I’m also a person who sleeps with their mouth closed, so I don’t need to use a full face mask to cover both my nose and mouth.

It’s early days with using the CPAP machine but I hope the set up I have now with the face mask I am using, I hope I feel the benefits of it soon and get a better night of sleep than I was having after receiving the results from the sleep study.

Until next time

Kaye