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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Yesterday, I asked the tough questions to the Colon/Rectal Team as they did their rounds visiting patients but because this is a new diagnosis, no one knows the answers to. No one could tell me how fast the mass in my bowel is growing, what is my life expectancy, it’s all now a watch to see things as they happen and make the decisions on treatment and how to act as we go. The mass in the bowel isn’t a stage as it has already metastasised to other parts of my body. It’s only treatment and there is no cure.

The funny thing is, it may not even be this cancer that ends my life but one of my other serious health issues.

One thing I know though, there are those who do not know this about me, I have a strong faith in God. I believe that he is here with me, even now in all of everything and I trust His plan for me to the end. Maybe he can help me speak to others going through the same thing?

While I had one of my cousin’s and a woman from my old church visiting me, one of my doctor’s came in to speak to us. My cousin had been filled in by this doctor everything to do with my medical prognosis and treatment already. I filled my cousin in on the rest I needed to fill her in on during her visit.

This bit is the hard bit, so before I say this, I will give you some time to grab a tissue or two before I proceed… got those tissues? Now, I will continue… I’m going to say this gently as I can for everyone reading this… I had spoken with another doctor on Sunday about life expectancy and he gave me at least 5 years. I wasn’t thinking about years from what I know about what I have, I was thinking months, and today, the doctor I was speaking with, did confirm that I do only have months to live, possibly a year if that. I will be given palliative treatment for my cancer.

From hospital, they are looking at places where I can go for care. The options are limited as I’m not over 65 years of age, so nursing homes are not an option. I’m not eligible for NDIS and I knew I wouldn’t be either as my current medical conditions aren’t eligible. Speaking with this doctor today, all I know is that the hospital are working on somewhere suitable to take care of me despite my age being a challenge. All I know is that I will not end up on the street as they acknowledge that they have a duty of care for me.

I had a phone call from the Oncology Team at Flinders Hospital as they received a referral and they wanted to make a booking to see me as an Outpatient as most of my hospital appointments are there. I told him that I don’t know where I am going to be after being discharged from the hospital but I did agree with him to make an appointment so I don’t get lost in the system and have to take forever to get another opportunity to see Oncology. If I end up somewhere close to the RAH, I can get them to refer me there instead. At least I’m in the system with Oncology and not lost somewhere.

As I just rest and prepare myself for the night, I catch up on messages and finish this post, while watching TV. I’m just living day to day now to enjoy every moment of life I have left.

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

Sunday Thoughts…

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You don’t get a day of rest on a Sunday when you are in hospital lol. The nurses still come in to do their observations regularly at change of shift. The doctor’s still do their rounds visiting all the patients in their care. The hospital still buzzes with day to day activity.

After being on a clear fluids diet since before Easter until today, it’s nice to be eating actual food again. (I do recommend the jelly though, just saying). My Low Residue diet that I am on now, after being released by the Colon/Rectal Team returned me to real food and the Low Residue diet, rather than the Ward Diet, so that will be friendlier to my easily upset stomach as there are foods that I still am not able to eat. Anything oily, greasy, fatty, too sweet, too acidic, fried, gives me issues with dry retching and sometimes vomiting as my stomach can no longer handle those foods. So my lunch of chicken, rice, gravy, carrots and cauliflower was absolutely delicious. There was a bread roll as well to go with it and for dessert, vanilla custard, which I only had some of the vanilla custard as that was too sweet for me.

The doctor who saw me this morning doing rounds, he asked me if I would help in participating with a program in talking with student doctors who would ask questions and then do an exam afterwards. I was thought of as I am a “complex patient” having multiple health issues and I said that I would be willing to help. These are student doctor’s doing their examinations for medical school and if I can help them to become better doctor’s and I can help them learn from a human perspective and not just from what they learn from a cadaver, then I’m game.

Had some “sister’s from other misters” visit this afternoon, that was a wonderful time chatting and catching up with them, as always.

The doctor’s are taking me off the antibiotics for the infection on my legs as I’ve been on intravenous antibiotics for a week now and they don’t want to affect the cells that have good gut health and create problems there, so they will now allow the body to do it’s thing with the infection.

Daily blood tests have been a norm as well. Being on blood thinners though, I’m bruising easily. My veins are offering a challenge as well to anyone taking blood because as soon as they sense a needle coming towards them, they move lol. The last cannula they put in my, which is my third, they had to call in their Cannula Team with the ultrasound machine and use that to get it in. 3 doctor’s tried and failed but not the experts last Thursday.

I still need to ask the big questions but since this is a new diagnosis, those questions will be answered later.

Welcome to the roller-coaster that is currently my life, if you are reading this.

Until next time

Kaye

Strange times…

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There have been several rainy days while I have been in hospital. Thursday there was a thunderstorm. It seems the sky is feeling me.

With each new test, each new scan, more cancer is found inside my body.

Thursday afternoon, there was an orderly at my hospital room door saying they were going to take me for an ultrasound. What?! That was the first I heard about this. Turns out it was for an ultrasound of my thyroid. They found a nodule the size .5 x .5 on the right side of the thyroid. A biopsy next week will determine whether that is something to be worried about or not and whether it is connected to everything else.

I still need to ask the big questions, you know what stage the cancer is? All I know is that it is advanced. Cancer is throughout my body. I need to ask about life expectancy. I need to ask a lot of questions.

What I have, there is no cure, only treatment as the cancer has metastasised to the liver, the brain and spread to other parts of the body.

Friday, all the doctor’s, specialists, oncologists have one big meeting, their MDT meeting to discuss patients in their care, treatment, cases and all concerns about the patient care.

The colonoscopy/rectal team were planning on doing a procedure for inserting a stent up my bowel as the mass that is there is going to eventually block off the back passage completely but they considered that to be too much of a risk. They discussed surgery to remove the mass, again, too risky. So they had an oncologist speak with me about chemo.

I also have diverticulitis in the bowel and that limits options as well, not to mention other serious illnesses like the start of heart failure, respiratory problems, high blood pressure, the list goes on.

Tomorrow, I see the colon/rectal team and it’s time for me to see what the future holds and to ask the big questions I need to ask.

Until next time

Kaye

Thinking the thoughts…

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Today while sitting in a chair in my hospital room, I hear the rain falling outside and looking out the window, I can see the light rain falling from the sky. It matches my mood today.

Yesterday, I had an endoscopy, a camera put up my butt to see if the mass was cancer, that confirmed it.

It’s not a pleasurable experience to be given a Fleet enema to clear out back passage for an endoscopy but it is effective.

Tuesday I had a blood transfusion, learned that my blood type is O+ as the doctor’s told me there are also concerns that there was a blood cancer as well.

Today, the doctor’s are talking about placing a stent in my bowel to allow me to poop as the mass is blocking up the back passage. That will happen Friday, they are planning.

I have a mass in my lower bowel, which has metastasised into at least 2 tumours in my liver. There is a blood cancer as well. I’m in the realm of no magical cures but just treatment and maintenance. Cancer is going to kill me but for as long as I can, I’m going to fight it.

Right now, I’m suffering from information overload as every day I get more information that my mind needs to process.

At least I’m receiving the best care here in hospital and I only came in to hospital in the first place for lymphoedema and cellulitis in the lower legs. See, the rabbit holes you go down while in hospital.

Be open with your doctor’s and tell them everything as that is how I found out about my cancer by mentioning that I can only eat certain foods because anything greasy, fatty, spicy, acidic, I would want to feel the need to vomit, or dry reach to finding out about the lesions in the liver from having an ultrasound on my organs.

Until next time

Kaye

When life gives you lemons…

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Wow, I haven’t been on here to post anything in ages, life just got in the way I know.

I’ve also spent the last couple of years in and out of hospital for one medical condition or another. I have a long list. It seems you hit a certain age and all these medical conditions start appearing.

Anyway, my latest one is bowel cancer which is still under investigation to see what is going on and how to treat it. The doctor’s have mentioned chemo as the best course of action.

It all came up as since being in hospital for another list of medical conditions that needed attention, that hospital stay impacted on the foods I could eat and what I could drink. Reflux and vomiting, even dry vomiting is a thing when foods affect you.

The foods I couldn’t eat and the things I couldn’t drink over the last year have gotten longer.

I went to my doctor about it as he suspected gallbladder issues and referred me for a full fasting blood test and an fasting ultrasound. Did both and the ultrasounds taken showed something suspicious with my liver… 2 lesions.

The next thing, he referred me for is a CT scan to be done… that didn’t happen as I was stupid and did a u-turn way too fast on my mobility scooter and came off, injuring my knees, legs, butt and head. Note to self… don’t be stupid and do u-turns slowly in future.

With the bruised legs, my lymphoedema in my lower legs decided to blow my legs up and then the leaky wounds showed up. I attempted to tend to the wounds myself under the instructions from my doctor but when my right leg became too heavy and I couldn’t walk properly, I knew it was time to go to hospital.

At the hospital, they did their own blood tests, read my medical file as it’s all on computer these days and did their own ultrasounds and CT scan and came up with the same results the original ultrasounds did, 2 lesions on the liver and the CT scan showed a mass in my lower bowel. The original cancer site and the 2 lesions on the liver is where the cancer has spread to.

This will become a blog about my cancer journey. This is new. I’m still processing it all and the doctor’s here in hospital are still investigating the cancer and the best way to deal with it as with all my current health issues, I’m compromised.

I’ve had my cry as everything is slowly sinking in. This is big news. Life changing stuff going on here.

Until next time

Kaye

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Okay, I know I haven’t been here in a while as life happened so here I am with a blog post finally…

You know that you are getting older when high profile personalities you grew up with as a Gen X start passing away.

This week we lost Ozzy Osbourne, Malcolm Jamal-Warner (Cosby Show) and Hulk Hogan.

These people were a part of my childhood or teenage years growing up and their deaths hit hard, especially Ozzy and Hulk Hogan’s passing.

We have lost a lot of people over the years, people who were a big part of the life of a Gen X and their deaths hit hard as well.

People like Whitney Houston, David Bowie, Prince, Michael Jackson, Olivia Newton John, George Michael, Betty White, Carrie Fisher, Mohammad Ali, just to name a few.

Their passing hit hard and with each passing of a Gen X icon, we are losing more of our childhood or teenage memories. We are losing a part of what made Gen X such a great generation.

We are also learning that as we get older, we have to face our own morality where we won’t be living forever. We are learning that when we were kids and teens that the people we grew up with won’t be living forever as we thought they would.

I’m just glad that in their passing, they have left behind their music, movies, TV shows, books, whatever for us enjoy as a reminder of the life they lived.

So in mourning their passing, I am thankful that each of them lived and they left something behind for us to continue to enjoy in remembering their life and what they mean to my younger self and to me now.

Until next time

Kaye

Australian Federal Elections…

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Today is Election Day here in Australia where we vote on who will be the next Prime Minister of Australia, our current PM, Anthony Albanese or Peter Dutton. I’m no fan of either but I will vote by putting my pencil to paper and I will have my say and not do a “Donkey Vote” with putting something not serious on my voting slips, as too many people do because they don’t care who gets the job.

For those who give “Donkey Votes”, don’t complain about who wins or about the way the country is run as you were given the opportunity to have your say but you opted to throw it away by not voting seriously.

In Australia, it’s compulsory to vote for every Australian citizen over the age of 18 years old. Okay, it is a pain in the butt to go to the Voting booth at some point during the day but I do it because I want to have my say.

Many voting places have “sausage sizzles”, sausages cooked on a barbecue for voters to enjoy while lining up to vote. It’s a great way to have a fundraiser as many voting places are at schools. You got to have a “Democracy Sausage” if the place you go to vote have them.

Our main political parties, The Australian Labor Party aka Labor and The Liberal Party of Australia aka The Libs, they elect a leader to represent the Party within the parties, the voters do not elect the Leaders, unlike the US political system. Australia follows the UK political system.

On voting day in the Federal elections, we choose the Leader of the party to become the Prime Minister. We also choose who will be in the Upper House of Parliament from choosing the local Members of Parliament.

Many minor parties have their representatives as well for people to vote for, especially those who don’t like the two main parties but this is the rub, people don’t consider who those parties give their preferential votes to, as most minor parties will give their preferential votes to one of the two major parties.

The other thing that voting for the minor parties does, is it gives the representative from those minor parties a seat in the Upper House. The people from the minor parties, they prevent the major parties from being able to run the country properly as they have their own agendas and their own constituents they represent.

If there is a hung parliament, with no clear leader in front between the Labor and Liberal parties, then the representative from the minor party with the most votes gets the opportunity to decide who the winner will be and give their votes to that person.

When that happens, the major parties are unable to run the country properly because there isn’t a majority representation of Labor or Liberal members in the seats of Parliament house.

I prefer our system of Government however as we just have to choose the party and not the person to run the party.

So regardless of who you vote for today, make sure you make your vote count and have your say.

Until next time

Kaye

Give me a home among the gum trees…

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Today 26th January is Australia Day, here in Australia. For many, it is a day of celebration, for others it is a day of commiseration and sadness. Australia Day for me is about celebrating what makes this country great with it’s cultural diversity with everyone who calls Australia home, from all the countries around the world.

Out of all the countries in the world where I could have been born in, I was the lucky one to have been born here, as I truly love calling Australia my home. Others were born elsewhere and came to Australia to live a better life, became Australian citizens and live in their adopted country.

For our traditional land owners, I see and feel you too and how many of you see this day as one of the worst days of your history. As someone who’s family came to Australia as migrants, as someone who was born here in this country, I am not going to continue apologising for something I had no part to play in back in 1770 when Australia was first discovered.

What I would love to see is the day be about celebrating what this country is about. This land we call home. This place that accepts cultural diversity, traditional customs and culture from around the world. We need to come together in reconciliation, in real understanding and in respect. As the song I am Australian by the Seekers says, “We are one but we are many, and from all the lands on earth we come, we′ll share a dream, and sing with one voice, I am, you are, we are Australian”.

Happy Australia Day to you all and how you choose to celebrate, or not celebrate the day 🇦🇺🪃🦘🐨🏏🍺⛱️

Until next time

Kaye