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

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…

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…

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…

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…

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