38. Red Card Alert!

Remember when I said I was hoping to never use my red card? I got to use it twice on Monday. For those who don't know, or who have forgotten, a red card is literally a red card. It is the size of a business card. It has a sticker on it with my hospital patient number, name, date of birth, Medicare number, my oncologist name, treating hospital and my address. In big bold letters it says "This Patient is at risk of Neutropenic Sepsis. If this patient has a temperature of >38.0c and or other signs of sepsis, please start IV antibacterial antibiotics as soon as possible." It also says:

Perform the following: (Maybe Ros can translate this for me sometime)

* T, P, BP, R & O2 sats

*FBC (including diff), EUC, CRP, Blood Cultures

*MSU, CXR, Wound Swab, CVAD Swab

*Does the patient have a central venous access device?

Patient is at risk of rapidly progressive Sepsis. Treat as per Febrile Neutropenia protocol.

So, let's start where I left off last time. I was hoping to go to choir practice last Thursday 24th. I wasn't feeling like I had much energy but decided I would go anyway, even if I just listened. I stayed seated, and tried to sing a couple of times but just didn't have any breath control, even for 2 or 3 notes. That was upsetting, I love to sing. I put it down to my tummy still being extra icky, bloated and yuck from the chemo two days before. I did make it through, even though a couple of fellow choir members said I didn't look too good and I should probably go home. Stubborn me stuck it out. I want to do things I enjoy to balance out all the medical appointments I have as well.

Friday. Still not feeling great. My period was due and I sort of felt a bit crampy and achy like I can beforehand. I REALLY didn't want to have to deal with that on top of how I was feeling. I also had a bit of a snotty nose, which can also happen in connection to my period. Hormones or something. It's like hay fever type symptoms. I did go to my exercise class with Lewis, even though I really just wanted to lie down. That worked out well as I did most of the class lying down, different exercises with lighter weights and therabands. Lewis is good like that, able to adjust my program to how I feel. I told him I didn't like feeling like an invalid. He said just being there showed how strong I was. He also told me that Greg, one of the guys from boxing class, had told him that he thought I was one of the strongest women he knew. That is high praise and made me feel a bit better.

Saturday. I didn't do much, mostly just watched Black Sails on Netflix. I did go to my optometrist to get another new contact lens for my left eye. The prescription had changed a bit and the shape to try and stop it spinning around. I had it in for about 4 hours but it was just making me feel woozy and sick so I took it out and put the first new one back in. Just walking made me tired and a bit out of breath. Where my throat glands a bit sore? I'm extra thirsty today as well. Tummy really bloated and no interest in food, even less than normal.

Sunday. I check my diary to see what notes I've added. I've just written down when I've done a poo and that I started to have a cough in the afternoon. I've been keeping a poo chart so that I don't descend into the world of constipation again. I put the time, 💩 and then as per the bristol stool chart. You can google it for more detail. I do remember I went to bed early, I was so tired.

Monday. Around 1am. I had woken up as I was coughing. My chest hurt when I coughed and I had coughed up green phlegm. Green is not a colour you want to cough up. My chest also felt tight and I was a bit breathless. I knew that wasn't a good sign so went upstairs to wake up Mither. She had to put her hearing aids in before she could hear me, one of the batteries wasn't working so then she had to change it to a new one. I told her what was happening and that I thought I should call an ambulance. My information sheet for the chemo says:

IMMEDIATELY go to your nearest hospital if you have any of the following:

* temperature of 38c or higher

* chills, sweats, shivers or shakes

* shortness of breath (tick)

* pain, tinging or discomfort in your chest or arms (tick)

* you become unwell (tick)

Seeing as I could tick three of those boxes I was up for my first ambulance ride. The ambulance arrived pretty quickly. 10-15 mins maybe. Both of the ambos were lovely, calm and asked me various questions about how I felt. I had some little sticky things put on my chest and the inside of my calves with wires attached to check how my heart was. A few blips, the ambo said. Perhaps it was because of my cough? He let the nurses know when I got to the hospital. I had a RAT (I refuse to stay rat test, you are just saying test test!!) which was negative. That's one positive 😁. They took my blood pressure and my oxygen levels. I was ok to walk up to the ambulance. The ambos were probably happy about that. Our steep front path isn't the best for stretchers or wheelchairs, or anything with wheels really. The ambulance was nice and cold. It only takes about 15 or so minutes to get to the hospital. Not much traffic that early in the morning. I didn't have to wait too long before I was taken to the emergency ward, bed 15.

I was put into a hospital gown, this one was actually a bit big. Bonus. More sticky things attached to my chest, just under each collar bone, a string of them from the middle of my boobs to under my left boob. The nurse had to hoist it up to put on the sticky things and then to attach the leads. There was also a couple on my tummy, each side. I get a thing stuck on middle left finger, as in it is sticky and has a cable attached to it. Usually I've had one that are like a clip that are easy to take on and off but this is stuck on. Not going anywhere soon for that. I was able to see what was happening, I'd put my contacts in before the ambulance arrived. I really didn't want to have to deal with being blind as well. The nurse asks if I have had a rat and I said the ambos took it and it was negative. She does a PCR test. Can't be too careful. She says that someone would be around to put a cannula in my arm to take some bloods.

I was coughing more, sort of a bit gross when having to wear a mask. There were a few empty beds when I arrived but they started to fill up in the next hour or so. A nurse comes to put in the cannula...stuck my twice but it didn't work. She apologises and says the doctor will be around to do it. Everything has to be done on my left arm due to all the lymph nodes been removed from under my right armpit. If she could've used my right arm I'm sure it would've been easier. It must've been at least an hour, maybe even two, before the doctor comes. I think he said his name was Charlie. The nurses had introduced themselves, I remember Liz maybe? Everyone was super kind and helpful. Dr Charlie put the cannula in so quick and I didn't feel a thing. He took out the blood and said when the results were back he'd come and have a chat.

I did go for a chest x-ray at some point. I don't remember if that was before or after the bloods were taken. The orderly (Rick? Mick? Let's say Rick) that came had sleeve tattoos down his arm, very intricate designs. I liked them. It was a weird experience to be zoomed around almost dark, silent and empty hospital corridors to the medical imaging department. It was all on the same level, so no lifts. Rick parked me somewhere near the x-ray room and said someone would be along shortly. A few minutes later a lady materialised from somewhere, went through all the same questions I'd gone through before my x-ray of Persephone a couple of weeks ago. I sign the form. She wheels me into the room, disconnects all the cables from me - hoisting the left boob to get all the ones attached under there. She thought she'd had them all but then had to burrow in again to find the one she'd missed. I have to stand up and hug a big plate. It has handles on each side to hold onto. She asks me to take a deep breath and hold. I start to cough and she says "That's ok, try again when you can". I do and she is able to take the x-ray. She turns me to the right, so that the plate is on my left side. She puts my left arm up above my head and my right hand on my head. Another breath and hold. Done. She wheels me out of the room and Rick zooms me back along the empty twilight corridors to bed 15.

Around 4.30am Dr Charlie comes to have a chat. There is a slight shadow on the right lung but it's small and maybe mucous. He'll sent me for a CT scan to check for blood clots. He says it's probably something viral from what blood tests have come back. He says he'll prescribe Ventolin to help open up my chest to help with the coughing. PCR was negative for covid. A nurse comes with the Ventolin puffer and a spacer. She tells me to take 6 puffs with 3 breaths in-between. I do that and I can tell it has helped a bit. I can breath in a bit deeper.

Rick appears again and off I zoom. Back to the medical imaging department for the CT scan. Rick parks me and floats off somewhere. He has very quiet shoes and doesn't make a sound when he walks so it's like he floats. Another lady appears this time, more questions. Sign. This time there will be a contrast dye injected. She asks if I've had it before. I tell her the other times I've had contrast dye and she says "This one is like a hot flush and then you feel like you need to do a wee." Great. Let's hope my pelvic floor muscles are up to the challenge! She wheels me into a different room. This has a big donut shaped machine in it, as if the donut is standing on its side, not flat. I don't have any leads on me this time but she disconnects my IV. Oh yeah, I was a bit dehydrated so they hooked me up to some saline. I lie down on the skinny table, feet towards the machine. She pressed a button and I move into the donut hole until my chest is right in the hole. She put's my left arm up straight, and my right arm up, bent with my hand under my head. She attaches a tube into my cannula. She says she'll take a couple of pictures and then we'll have to wait a couple of minutes for the doctor. Doctor arrives and a computer voice says "Breathe in for 3 counts and hold", the machine whirls into life, I can see little tiny lights, like stars, appear as the centre of the donut which then spins faster and faster. The stars become little streaks of light. Do I see some colours? Pink or purple maybe? The voice tells me I can breath again. I cough a few times. I'm told that the same thing will happen but this time with the dye. Breathe in 1, 2, 3, hold.....dye....no kidding, really HOT flush and gotta wee......and breathe again. After about 10-15 seconds I don't feel like I am desperate for a wee anymore and not quite so hot. All done. The nurse wheels me out of the room and then Rick appears and zooooooom, off we go again back to bed 15. Nope, as Rick wheel's me past the nurses station they say I'm to be moved to Short Stay bed 8. He backs me up and off we go, this time not too far. It's about 6am I think.

I send a message to Mither to let her know what's been happening and where I am. I don't feel hungry but know that I haven't had any food for 12 hours. I've been awake all night, can't sleep with my contacts in and I really couldn't anywhere with all the coughing going on, nurse and doctor visits, wee trips to the toilet, bloods taken etc etc etc. I ask if I can have anything to eat and the nurse says she'll check with the Dr, nope, not quite yet. All tests not back yet. The lady in the next bed had come in with abdominal pain, turns out she was super constipated and needed to be given an enema. It reminds me of my own bout of constipation and I really feel her pain. The enema must've worked cos off she goes to the toilet and I hear the nurses are happy with the result. The lady also is much happier too.

Around 9am Dr Adam (I think?) comes to say the CT scan didn't show any blood clots on my lung. That's great news. He took some more blood to check my heart function. The Doxorubicin chemo drug can affect heart function so they want to rule that one out too. He says I can eat something and tells the nurse. She brings me a breakfast box. Cornflakes, milk, apple juice, water, two fruits in juice. I have a bit of a phobia about cereal, more soggy cereal than anything. It dates back to when I was young and up at Grandma and Grandpa's farm visiting. I didn't want to have muesli for breakfast but Grandma didn't want to hear that and made me eat it after it had been sitting there around half an hour, all soggy and tepid. Ever since then I don't like mashed potato either. I decide that I could eat the dry cornflakes and sip the milk in-between. That worked quite well. I was impressed that the box, plate, spoons were all cardboard, even though there was a plastic window in the top. I wonder if the hospital recycles. The apple juice and two fruits went down a treat and the ice cold water was SO nice.

10am 💩 (2/3)......hmmm, a 3 or 4 is what I want to be at. Being dehydrated can be a reason for constipation so that could be why. Blood tests come back ok and Dr says I can go home soon once my discharge papers are done. I text Mither and she says Rach can come pick me up. Mither also brings some clothes for me, I came to hospital in my PJ's. Discharged around 11.30am with a script for antibiotics. Even though they say it's a viral upper respiratory tract infection as a precaution to stop bad bacteria taking advantage of my weakened state I should be on them for a bit. Stopped off at Loftus Pharmacy on the way home for the Amoxycillin.

Super tired by now. Went for a sleep at 12.30pm to 3.30pm. 3.45 💩 (2) decided to take a movicol. Shell brought the kids for a visit. I had been planning on surprising Aneira after school and then having dinner with them before the whole hospital trip. They arrived around 5.20pm. I was still pretty tired, coughing still. Zaeli had made me a card during the day and Aneira made me one in the car. I love their artworks, so creative. I really enjoyed seeing them, I hadn't seem them for at least two weeks.

By 6.30pm I was not feeling that good, a bit hot. I took my temperature, 37.7c. That is high for me. I had a headache and didn't feel like eating. I said goodbye to the kids and went to bed. I told Mither to check on me before she went to bed. Tune in for the next post for ambulance ride #2.