39. Ambulance trip #2

Monday 27th. Mither came to check on me around 9.45pm. I'd sort of slept on and off but wasn't feeling too good. Body aches and harder to breathe. Mither brought the thermometer with her. Temperature is 38c. I'm not surprised. You know those outdoor space heaters they have in restaurants that you can sit under and you feel the heat from them? It felt like one of those but it was about 10cms away from my head!! Calling the ambulance again. Both times I've called the people who answer the ambulance call sound like they've been asleep when they answer.

I am having trouble keeping my eyes open, getting upstairs took a lot of effort. After about 5 mins of sitting in a chair I need to lie down so I do on the lounge room floor. Mither gets me a pillow. The light is hurting my eyes so Mither dims the light bulb. I'm not sure how long the ambos took to get there this time but maybe a similar time. I really couldn't answer their questions so Mither filled them in with what had happened and gave them my hospital discharge letter. My blood pressure was taken while lying down, I just remember her saying 143 something. That's high for me. She asks if I am able to sit up in the chair to take it again. I do, it's hard to get up, makes me dizzy. She takes my temperature. 38.2c. No sticky things or leads this time around. I'm still covered in some of the sticky stuff from the ones earlier that I took off before leaving the hospital, little grey rectangle outlining where they were. Time to get in the ambulance for my second trip in less than 24hrs. The ambo takes my backpack, I have some clothes in it this time. "Have you got your phone charger?" the ambo asks? That's a good thing to take along. Mither goes and gets it. I'm asked if I'm able to make it up the front path. That is a good question. "It can take us as long as it needs to" she says. The path isn't wet tonight, it was the last time I did this walk. Our path has a rail and it comes in handy. It's hard to breathe and I am coughing. I hang onto the ambos arm once through the front gate, no rail here. I wobble a bit and she steadies me. There is no way I could've put my contacts in this time around so I'm also dealing with blurry shapes. The ambulance has big flood lights on the side so that helps a bit. I make it to the stretcher. Last time I walked up into the ambulance myself, this time I go in sitting up on the stretcher.

When I'm all tucked in and we have started to drive off the ambo takes my blood pressure again and checks my oxygen levels, 88, 89, 88. She puts some nasal prongs on me. I remember her saying something about 3%. She tells me to breathe in my nose and out my mouth as deep as I can 5 times. 91, 92, 92, 93, 92. She asks me about my eyes, I tell her a very short version about keratoconus. She hadn't heard of it and I tell her that only 2-5% of people in the world have it so not surprising. She types away on her little computer, every now and again checking on me and reminding me to breathe deeper through my nose if I can. I don't really remember too much of the trip but it seems like we are at the hospital really quickly. It's hard to open my eyes, not that it would do me much good really.

I don't remember too much but I do remember I was in bed 12 this time. I'm put into another hospital gown, this time I need some help from the nurses. Sticky things and leads put on again. It's the same nurse from the first trip. "Can't stay away because we are so good?" she jokes. I nod. This time the clippy thing on my finger is the hinge one, not the sticky one. After a short time, possibly 15 mins, though it could've been longer, ambos wheel in an 82 years old gentleman. Parkinson’s with dementia who'd had a fall and hit his head in an aged care home. He's put opposite me. I think his wife and daughter were also with him. He has a rat done and then I hear the nurse who had put on the sticky things say "Rat positive" and then turn around, cross over the room and say "I'm moving you to a single room with it's own bathroom to keep you safe". I'm glad there was one available cos covid on top of whatever I had would not be fun at all.

I was in the single room all night. I don't remember much. I had 2 panadol. That helped with the pain. I felt like someone was trying to pull my joints apart. Nurses come in and out, blood pressure taken, O2 sats sitting 94 or 95 I think someone said at one point. I sleep, or pass out, one or the other. Every hour the blood pressure cuff automatically powers up. I need to pee at one point and press the nurse call button. I'm hooked up with wires and plastic tubing nasal prongs, and who know what else. The nurse takes me into the bathroom and points and says "The toilet is there". I can't really see anything, white on white is a bad combination for someone who is vision impaired. It's also bad if someone has dementia. Much harder to recognise objects. Having a coloured seat makes it a lot easier, that is something they should probably have in an emergency department. I'm sure there are a lot of people living with dementia that come through too. She turns me round and backs me up until I can feel the toilet on the back of my shins, she puts my left hand on the rail on the wall. I sit down and she puts my left hand to where the toilet paper is. She gives me a little jar to wee in. Oh yeah, I did that the first trip as well. This is when you wish you had a penis cos it would be much easier to fill up I'm sure! Or less messy I guess. She says she's just outside if I need help. Breathing is hard again and I'm coughing a lot. Yes, definitely messy filling up the jar. I can't really tell if it is full and ask the nurse. She says it is. She helps me pull up my undies as I need to hold onto the rail. I'm getting dizzy again. A quick wash of the hands and then back into bed and onto the oxygen again. I'm wheezing and coughing. The nurse asks me where my Ventolin puffer is. It's in my bag. She gets it and the spacer out and says 12 puffs and counts them off for me. Slowly I breathe a little easier and I stop gasping.

Sometime in the night Rick came and zoomed me to have another x-ray. It was the same lady as before. "Still here?" she asks. I tell her I'd been home and back again. She notes I was on oxygen this time and asks if I'll be able to stand ok. I think I would be. Same procedure as before and then back in bed with Rick zooming me back to my room. Even though I couldn't see I could tell it was Rick as when he was at the side of the bed putting the rails up I got a glimpse of tattooed arms and he also was the right height. Well, I figured they were tattooed arms as his arms were much darker than his face in all their blurriness.

Sometime in the early morning a doctor comes in. Not Dr Charlie. I can't remember his name. He is a bit miffed that no one had put in a cannula or taken bloods through the night. He does it, just a bit higher up than the other one was. He drops them off and then comes back and gives me another jar to put in some of the gunk I was coughing up. It's a dark yellow now, not green which is better. Then he sits down with his computer and asks for what had happened in the last 24 hours. We go through it all, he needs me to spell keratoconus, I do but I notice that it's been spelt wrong on my paperwork. He says that he is sending off a request for an oncology consult and someone will be back to do that.

I think I slept again, the lights all come on in emergency. I guess that means it's daylight outside. A new nurse comes in, says she's just talked to a relative, my mum perhaps, who had called for an update. I'm guessing shift change has happened. It's 7.36am and I sent a text message to Mither with update. She'd been very worried. I scared the parents with how out of it I had been when the ambos were there. The nurse gave me 2 more panadol, my aches were coming back again.

Around 9am I heard a tap on the glass to the window of my room - a see a blurry shape waving. No idea who it is but then they came in all gowned up in yellow with a face shield as well as mask, gloves etc. Am I infectious? He says he is Simon, the doctor for the oncology consult. Before he spoke I thought it might be Dr Man as they were a similar height and build but his voice was a bit different. Similar though, same way of speaking. He said the second x-ray does show a bit more shadow than the first one does, on the right. He listened to my lungs, putting the stethoscope on my back. He says the right side is a bit crackly. He then wanted to know my whole story from when I left the chemo clinic on Tuesday until now.

That's when he figured the first signs of infection to what I had showed up Thursday night when I couldn't get breath properly at choir. As you can see from the previous post I progressively got worse from then. He says I was 94-95 O2 sats while on oxygen and I will need to be admitted until they can figure out 1) source of infection, 2) I'm off oxygen and can maintain 96 or above 3) don't have crackly lungs. I'll be admitted to the oncology ward.

10.10am. Annie the dietician called. She's part of my cancer support team. She asked how I was and could we set up a time to come in for an appointment and I said "I'm just at the other end of the building in emergency and will be admitted to the oncology ward". She said she'd keep an eye out for where I was and hope to come see me when I'm admitted.

10.30am IV antibiotics hooked up. The ER doctor called them "the real ones" as apposed to what I was prescribed when I was sent home yesterday. The nurse also took a rat and PCR test to double rule that out. I was given a breakfast box, same as before. I wasn't hungry but I'd only had a couple of crackers around 4pm on Monday and nothing since. I munched on some dry cornflakes but didn't touch the milk, it was warm. 11.30am I was moved to the oncology ward. It wasn't Rick this time, he must just do night shifts.

As I was being wheeled past the oncology clinic reception I see a blurry head but could tell it was Kim. She points at me and I point back. I can imagine she had a confused/concerned expression under her mask. She comes out and follows me up the corridor and we have a bit of a chat while the orderly cleared a path. There must've been other beds or chair in the way. I fill Kim in and she says she'll come see me again when I'm settled. The nurse tried to take my blood pressure but it squished my cannula and hurt like crazy. She took it on my calf instead. I'm told I'll be put in bed 18 until bed 27 becomes available. That's a single room. I feel extra special. I then find out that bed 27 is for infectious patients so that other people on the oncology ward don't get sick too. When I'm in bed 18 I have on a mask and the curtains are closed around me. I stop eating the cornflakes and eat the two fruits. I spray fruit juice all over my left boob trying to open the plastic top. I have a silent giggle to myself. My tummy started to feel a bit off and I buzz the nurse to tell them I was feeling a bit nauseas. She gives me a spew bag.

IV all done and my tummy feels a bit better. It's about 1pm I think. A little lady pokes her head in my curtains and asks if I would like some roast chicken breast with vegetables and gravy for lunch. I say yes. I really haven't eaten anything real for ages and didn't feel hungry but the body needs food. There was also a slice of white bread, apple juice and peach crumble with custard. I slowly eat everything apart from dessert. One good thing with chemo is I have no inclination whatsoever to eat sweet or dessert type foods.

Around 1.30pm I'm moved to bed 27. 2.45pm Lisa came to tell me that I'm negative for covid, flu A & B, RSV and some other thing too. Ok, none of those. There had been mention of having another heart ECHO to compare it to the one I'd had before chemo but nothing since.

Mither, Ange and Evie came to visit. I put in my contacts. AHHHHHH, so nice to see again. Towards the end of the visit the Dr, Sharon I think?, came and proclaimed "You've grown rhinovirus". I envision growing a horn, grey baggy skin and wrinkles. It's the common cold virus. I sent a text to Lewis to tell him what was happening as I had said I was going to do a class on Wed (which was today) and he asked "Are you a white (wide-lipped) or a black (hook lipped) rhino?" I figured it might depend on how I felt. Evie had chosen some beautiful flowers that had purple roses in it and had made a lovely card too. She was pretty excited that outside my window there was a pond with some BIG fish in it. The Dr said they would do another IV antibiotics even though it was confirmed viral just to cover all bases of infection.

Around 5pm a nurse came in to say that I seem to have been lost in the meal cosmos and what was my preference for type of meals and any allergies. Apparently you can't choose chilli as an allergy but you can chose capsicum so she put that. I ended up getting dinner just before 6pm, it was pasta with meatballs and vegetables, apple juice and caramel panacotta (yucky - I would've eat that before chemo). I spilt tomato pasta sauce on my hospital gown, same spot as the fruit juice. I laugh at myself and then cough.

Pretty tired so to bed early. Nurse came around 1.30am to do my obs, tried without oxygen but sats dropped to 92-93 so back on again. On 2% now. In the morning I'm a bit constipated so tell the nurse and she gives me some movicol. I had breakfast, wheatbix.......I munch on them dry and sip milk. Slice of white bread with strawberry jam. Orange juice. I didn't have a choice to order breakfast cos of me being left off the list. I ask the nurse if I can have a towel to have a shower. I realise that I hadn't had one since Sunday morning and I felt gross. That shower was amazing! I felt a bit of a sting between my boobs, those sticky pad things had broken some skin when I'd taken them off yesterday.

9am a lady came and took my blood. About half an hour later Dr Simon and Dr Hayden came to visit. Dr Simon listen to my lungs, crackles seem to be gone. Oxygen is better if I concentrate on sitting up and breathing deeper. He takes me off it and says if I start to get breathless again to buzz the nurse. He said to sit in the chair preferably today and see how I go. He'll be back in the afternoon and see how I feel and if no more fever spikes (apparently overnight I had gone up a bit again) and I'm confident, I could go home. It would also depend on my blood test to make sure my white blood count was still going up. He said to make an appointment for my GP for Monday and when I do go home to take my temperature 3 times a day.

1040 💩 (4) sigh of relief.

Donna and Jason visited around 11am. They brought a card with butterflies on it and drawings from the kids. They had to go to school. Anna had used all the sparkling pens and said "Because I love Aunty Caz and the sparkles with help her feel better"and Erik's was made into a paper plane "So it can get to Aunty Caz fast and help her get better". Both of them did help me feel better that's for sure. Annie the dietician visited when they were there and we discussed what I was eating, when and what issues I'd been having. I ended up being weighed not long after she had left (Wednesday is weighing day, says the nurses). It was a chair scale to sit on. 137.5kg. I had lost over 3kg since my last chemo a week ago. Annie was happy with the way I had been eating and what I was eating. I have weight to lose but she was wanting to make sure that it was being lost in the right way, not losing muscle mass. That was also the concern I was having. We talked about how to get the biggest "bang for your buck" as in the most nutrients in the smallest amount so when I only want to eat a few mouth fulls then I know what would be best. She says unless things drastically change with my weight or eating then she is happy with how I'm going. Let's see how things go with the new chemo drug when I start on March 14th.

Another round of IV antibiotics. The nurses gave me a tablet to help with the nausea this time. I had a nice video call chat with my friend Carla in South Carolina. Lunch came while we were talking, chicken parma with vegetables, pear, orange juice and lemonade. I also got to order dinner and breakfast while we were chatting. The lady stood in the doorway with a tablet and rattled off all the choices. I chose the roast chicken etc that I'd had for lunch yesterday as I knew it was nice. Carla was impressed with the choices and service. Compared to USA public hospitals I guess there is a huge difference. I really don't understand the mindset behind the USA "health" system. It seems like it's just there for profit to me. Everyone should be entitled to good health care no matter who they are or how much money they have or what job they have. It's a basic human right. Ok, rant over.

Kim came to visit. I was unsure if I wanted to go home or not. My blood work had come back ok and it was up to me. Everything came flooding back as to what had happened, how scary it was not to be able to breathe, not knowing what was happening or what was wrong. I was feeling gross in the tummy again and not as well as the morning. Kim was really good at asking me questions to discover what I was worried about and how I was really feeling. I really wouldn't want to go home and have the same thing happen as before. Also, I think Mither and Pither might also have some stress going on, I was still coughing a lot too. I told Kim that Shell was coming to visit and I'd have a chat with her and make a decision and let the nurses know.

Shell came to visit and we did some art together. She had brought some gum leaves. I traced around them with a black pen and then used water colours to paint the leaves. I really enjoyed it a lot. I'd asked Shell if we could do some art together, I felt like it was a good way to get out of the medical head space and into a more creative space. 3.45pm 💩 (6). Diarrhoea isn't a good sign. My tummy had not been feeling well, some pains too. Felt a bit better after the trip to the toilet. That made my decision for me. I think I would feel better staying the night. Shell left to go and get Aneira and Zaeli for a short visit as the last time they had seen me I was heading for my high temperature crash so seeing me looking a bit better would show them I'm doing ok. They came around 6.30pm for about 20 mins. It was nice to see them without feeling so crappy like I was on Monday.

Dr Simon came in to see what I had decided and we talked a bit about how I was feeling. Told him I wasn't feeling as good as the morning, diarrhoea and the last three temperature readings (36.6c, 36.9c and then 37.1c) as well as the cough and scaring the parents it would make me less stressed if I stayed one more night. Nurse took the cannula out before I went to bed. 8.40pm 💩 (5/6), 11pm 💩 (6). My tummy had been making growling noises like a raging group of male koalas. If you haven't heard that sound there are some YouTube clips if you want to look them up. I told the nurses about the diarrhoea and they said to let them know in the morning how I was and if it was still continuing.

Thursday 2nd. 💩 not as bad, more a 5 than a 6. Breakfast, scrambled eggs, 2 slices of brown bread, butter, Vegemite, apple, orange juice, water. 8.45am Dr Simon and Dr Hayden came to check on me. I was glad I'd stayed the night as I was much better and felt confident to go. Drs said the antibiotics can be hard on the GI tract and also rhinovirus can cause some loose stools as well. The cough could stick around for another week or two. Try and avoid the general public for about a week if I can. Take it easy, rest up, check in with GP on Monday. My right ear had been blocked but when I was admitted to the ward it popped, a bit sore on and off. The antibiotics should help if there is any infection but get the GP to check. Could be wax. Take one tablet with breakfast and dinner for 5 days. If I get chest pain, breathless or temperature 38c and above, back to the hospital.

9am a nurse came and gave me a BIG tablet, oral antibiotics, different from before, stronger and more broad. She also gave me an injection in the tummy, I think she said Clexaine. It can stop any blood clots for people who haven't been very mobile while in hospital. Discharge papers, medication given. Don't have to go to the pharmacy this time. Shell picked me up and I was home about 11am.