We've been dealing with the C word for 4 years now and for 2 1/2 of those 4 years I have been terminal, so as you can imagine hospitals have become a regular fixture in my life, so much so that when I'm not at home my niece Ava says "Lisa's at the doctors/hospital make her belly better", even when I'm on holiday or out with girlfriends she just presumes if I'm not at home, I'm somewhere getting treatment for my sore belly.
Nobody enjoys going to hospital, it's a cold, sterile place for sick infectious people. I've been in the emergency department more this last few years than I've been in a supermarket.
Luckily for me I rarely have to wait in the waiting room, I usually approach triage (if I'm not taken by ambulance) sometimes I can speak for myself, other times whoever I attend the hospital with will speak to the triage nurse for me as i'm in too much pain to stand or talk, I am then put in a wheelchair and escorted to a bed in the ED.
I have had a few horrible experiences with people in triage who should NOT be in the industry of caring for people. I've had one nurse yell at us for having my brother and his wife waiting in the ED waiting room for me, I mean seriously why would my brother and sister in law want to wait for me? I mean who cares that their sister has terminal cancer and every time she presents to ED there's the risk that this could be the tumour bleed that means she leaves hospital in a hearse, who cares that this could be the time that her blood pressure drops so low that she becomes unconscious and becomes a vegetable, I have no issue that the nurse wanted more seats available for sick people in the emergency department, it's all in the delivery, simply ask them to relocate to the hospital café or just ask them to move so that a potential patient can take the seat, which by the way there were seats available, my brother and his wife would not sit and ignore sick people either, this woman was just rude. I understand that people have stressful days and they can sometimes take it out on others, but this was actually my second interaction with this woman and on both occasions I was made to feel that I was a burden rather than a patient. I have absolutely no desire to be in the ED, I'd rather be at home watching The Real Housewives of Goulburn than be in hospital, I don't turn up to the hospital just for the fun of it, in fact 90% of the time I'm forced by my GP or a loved one to go to hospital, I've been rolling around in excruciating, can't breath, can't talk, can't walk and can't cry it's so painful pain and still rejected my partner's demands to go to hospital. So to have a nurse whose role description actually states that they support recovery by using care plans, carrying out care procedures and assessments, and evaluating and focusing on the needs of the patient rather than the illness or condition, to make a patient feel that they are a nuisance, is just completely opposite to what they are actually meant to be doing.
When you reach a bed in ED you are cannulated (I can no longer be cannulated as all of my veins have collapsed due to the amount of chemo I've had), thankfully I now have a port in my chest and this is where they now put my cannula, a doctor then visits you and assesses your situation and any scans, bloods etc that he/she feels you need are ordered, once all of these have been performed the doctor will then determine whether you require hospital admission.
I will talk about my most recent visit on Friday the 15th of April, I woke up at 7am, it was about 25 degrees celsius and I was freezing, shaking from head to toe, I took my temp and it was only 37.5 degrees celsius, but because I was having rigors (all over body shakes) my dad drove me to the hospital, they admitted me straight away and took my temp, it was 40.9 degrees, very high and my bp was very low, they immediately put me on IV antibiotics and IV fluids, after a few hours the doctor came in and told me they were moving me to a different room, one with a view, but what he was actually doing was taking me to the resuscitation room, because my blood pressure was so low it was considered almost fatal.
The doctor looked at me, Dad was sitting to my left and he simply said "Lisa you are very sick and I'd say it's the most sick you've ever been", I responded by saying that I've been told I wouldn't make it through the night one time, are we talking as bad as that, to which he replied, "you are very sick", that was enough for my Dad, he burst and ran out of the room, I have to admit upon hearing that, I didn't cry, I suppose I just went numb and I just thought no, I don't feel sick enough to be dying, the doctors and nurses were amazing, two of them went out and consoled my dad and luckily a girlfriend of mine came directly to the hospital to help comfort him also.
Let me just say, on the whole, Nurses are amazing, they are not just the backbone of the health system, they are the tibia, the funny bone, the brains, the heart, they are the oxygen that keeps the hospital breathing. Nurses do not get enough credit, they are selfless human beings, who get vomited on, spat at, sworn at, punched and so on, they are the ones who are on the frontline on a Friday night when you and your girlfriends decide it would be fun to do Jaeger bombs, fireball shots, throw in an ecstasy tablet or two and when you are rendered unconscious and choking on your own vomit, they treat you with the same respect they treat the poor 80 year old woman who has come in with a broken hip, because that's what Nurses do, they care for you, no matter your social status, your race, your sex or if you haven't had a shower in a week and your body odour makes Pepé Le Pew smell like Chanel no.5, they still hold your hair while you vomit your spleen up, all because you thought it would be a good laugh to get wasted and all this for nowhere near enough pay!
So back to Friday, I was transferred to ICU at the private hospital and was greeted by, for privacy reasons let's call her Caitlyn, she was obviously a transgender woman, more power to you I say, if you feel you're in the wrong body, I wholly support you getting gender realignment surgery or if it just makes you feel better to grow your hair out and wear makeup, a dress and heels, I say you go girl, as I'm clicking my fingers in the shape of a z in the air.
As soon as I was transferred to the bed, I could tell it was one of those air mattresses that constantly move so that you don't get bed sores, the problem is these mattresses cause me major nerve pain from my tumours and have caused my readmission to hospital before, so I immediately asked "Caitlyn" if she could get a normal mattress ordered? To which she replied loudly and aggressively "that will not be happening tonight, I'll turn the mattress off and the nurse in the morning will sort that out, I've got other things to do that are more important than ordering you a new mattress", I have to admit I cried, it was 9pm, it had been a long scary day, I hadn't eaten or drank and I was vulnerable, my dad was made to stay outside at this point, she then turned the mattress off, it deflated and left what I could only describe as speed humps all over the flat bed and I was expected to sleep on that, when I'm already in pain. So I bit my tongue. She then proceed to give me an ecg, which I had been having all day, she pulled my gown right up exposing my whole body, naked, without any warning and the blinds were open, so I politely asked her to close the blinds, to which she responded don't tell me you're shy, excuse me? Yeah I have no problem having my boobs out for all and sundry to see, so she huffed and puffed and yelled to another Nurse to close the blinds, because she couldn't walk 1 metre to the window, I then accidentally knocked one of the little clips off and she then proceeded to yell at me that she was the nurse, I am the patient and I do not touch anything without her permission, after that my Dad (he had also heard her yell at me about her being the nurse) was allowed in and the first thing he mentioned was the piss poor excuse for a mattress I was sitting on and that was it, she turned around and yelled at him "do you realise this is the 5th time (hhm hhm the second) this has been brought up, it's not happening, just accept it"! I could see the rage in my dad's face, like the old cartoons where their face goes beetroot red and steam shoots from their ears and I just looked at him with those eyes, those pleading eyes, pleeeeease don't say anything, I have to spend 10 more hours with this person alone, so he didn't say anything, he was then overly nice to her in the hope she would become nicer, no that didn't work.
At this point another nurse came in and asked what was wrong with the mattress, to which I replied I can't sleep on them due to tumour pain, so Caitlyn has turned it off, "What?" she replied "but that just deflates it, you can't sleep on that, we'll just get you a new one up". Suck on that Caitlyn, so 10 minutes later a wards person brought the bed up and asked Caitlyn which room it was going to and he would swap the beds over, no, Caitlyn told him to leave it there and she would sort it, so the wards person left it in full view of my room and Caitlyn left that bed in the hall for 40 minutes while she sat at her desk flicking through a who magazine, her way of showing me who's in control. I also was hooked up to a bunch of machines and was not allowed to walk far due to my low blood pressure, because of my pelvic tumours I need to pee a lot, I had to use the commode and when I finished I asked her if she could leave it there, as I go regularly, her response was "no and if you buzz and I'm busy you'll just have to wait and hold until I can get to you", once again another nurse came in and mentioned why don't we just leave the commode in here? (I should also let you know, I never mentioned either the mattress or the commode to the other nurse, they noticed these things themselves) so they left it, I then fell asleep, woke up and it was gone again, what the? My last complaint was that I couldn't get anything from my bags as I couldn't reach them and I asked her to pass me a bag, her response again was to pick up a bunch of papers, show me them and yell "do you see these, this is what I should be doing, I'm not a butler, I'm not here to fetch your bags!", she of course passed me my bag after her dummy spit, upon handover she said to the day nurse I was a micro manager, but a pleasure to look after, hhm hhm excuse me while I clear the bullshit from your throat. Once again this is a one off, the good nurses, way out weigh the bad ones.
I was then transferred to the cancer ward, where I had numerous nurses and they were all fabulous, I spent only 3 days in there as the adrenalin through my IV had increased my blood pressure and the IV antibiotics had started to clear up my pneumonia in my lungs and the septicaemia in my blood, the great thing about being palliative is the doctors and nurses try to get you out of hospital as quickly as possible, as they know how much time you spend in them, of course they only allow you to leave if your back to good health.
I have been admitted to hospital so many times I couldn't tell you the exact number of admissions and although you never want to be there I have to say my overall experience with the numerous hospitals, nurses and doctors have been really good, my advice would be that you are called a patient for that exact reason, you need to be "patient", you are not the only person there being treated, for every one of you, there is someone else that is worse off, give the nurses and doctors a break, they are trying their best. I'm not saying they're all fabulous, obviously you just have to read this blog to see I'm not enamoured by every nurse or doctor that treats me, but you just have to be reasonable, if you feel you're not being appropriately attended to, let them know, they're not mind readers, just speak up.
I only hope for whoever is reading this, you never have to go through what I go through regularly, going to hospital once is not fun, never mind every few weeks.
My parting words would be don't use hospital as a medical centre or a GP, if you have a cold or an ingrown toe nail, go to the doctor, not ED, if you are truly sick, go to the hospital, the Emergency Department is already bursting at the seams, so use your common sense and only present to the ED if you need to.
My name is Lisa Magill and I have been navigating the minefield that is cancer since just months after turning 30, people have been saying to me for years that I should put my thoughts into writing and as time has progressed I thought I had left it too late, well here we are nearly 4 years in and for some unknown reason I've decided to start to write today.