Woah, so I have missed a few days here. I will do my best I can to fill in whats been going on.
On sunday evening (day 10) my throat infection was getting worse and it was agony to swallow saliva let alone food and drink. Also one of the incisions on my chest from the port was starting to look a bit like it was getting infected. It was pink, itchy and starting to sting.
Monday morning I called my GP and booked in to see someone in the afternoon to try get onto some antibiotics or something to shake these horrible symptoms. Mind you, it was now day 11 post chemo treatment meaning I was at risk of infection and low blood counts (As I will be every day 10-14 post chemo).
My doctor was a complete arsehole to be honest. He had terrible bedside manner and was just unsympathetic towards how much pain I was in and said nothing was wrong with my throat. I had also brought along with me my 2 yearly drivers license medical form which a doctor must fill out for me to be able to state that I am fit to drive as a type one diabetic. He refused to fill the form out and basically said I was unfit to drive because my Hba1C (I’ve mentioned these before – a form of hemoglobin used primarily to identify the average plasma glucose concentration over prolonged periods of time. – In other words, my blood sugar level as an average over a 3 monthly period) was at 8.1%. Now, 8.1% is a perfect reading and my Endocrinologist was very happy with that result and its actually the best I have had in 19 years of being a diabetic! YET apparently the law states that anything is at 8% or higher is stated as bad control. That is absolute BULLSHIT! I am the best carer of my diabetes and it is well under control. Anyway this just made me even more upset. I will be getting a second opinion on this seeing as every other doctor has signed it off no problem at all in the last 10 years of me having a license.
So I was given some antibiotics anyway and some lozenges to take regularly to make sure I didn’t get a reoccurrence of oral thrush seeing as I was now on antibiotics. If you didn’t know, thrush does have a high rate of occurring/reoccurring when you take antibiotics.
Monday evening came and Adam and I went to bed about 11:45pm. I was feeling absolutely shit and in a lot of pain even after taking Nurofen Plus. As I got into bed I checked my temperature. Great, 38.2! Straight to emergency.
I checked in to Sir Charles Gardiner Hospital and was bummed that there was a large amount of people already in the waiting area. Luckily, the lady at the reception said I could go straight through! I guess having a major illness can pay off in some ways hey?
I was in an isolated area with walls rather than the usual curtained off areas as I was possibly ‘Neutropenic’ (is a hematological disorder characterized by an abnormally low number of neutrophils, the most important type of white blood cell, in the blood. Neutrophils usually make up 50-70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood. Hence, patients with neutropenia are more susceptible to bacterial infections and, without prompt medical attention, the condition may become life-threatening). It was about 4 hours of blood tests, anti nausea, tests, drips etc until I was taken up onto the cancer/leukemia ward. Yet again, I was in a room of solitude. I was not allowed to leave my room or really get up much. So I was bed ridden. My oncologist at my usual hospital (they don’t have an emergency department) has said that if I go to ED, they would contact her and then my oncologist could get a bed for me at my usual much nicer, private hospital. Of course, all the beds were gone and I was stuck in this death ridden, depressing place. The nurses were all lovely, yet my doctor was a bit of a jerk and looked like Borat. He was so interested in talking to me about my bowels that I felt like punching him in the face.
So I was in SCGH for 3 days. I wasn’t allowed to receive flowers because plants could make me more sick. I had absolutely no appetite (and still don’t). They were suspicious that I had a blood infection due to my low neutrophil blood count which was at a very low reading of 0.08! I was on several doses of IV antibiotics being infused through my port many times day and night. I had bad diarrhea – even though I wasn’t eating, I had blood noses, my throat was getting worrrrrse, my port infection was also getting worse, bad reflux, nausea, back pain and high temperatures where my brain felt like it was literally being cooked.
Today is day 15 (friday). I was finally transferred from SCGH yesterday evening to my own hospital at SJOG subiaco due to a free bed also in isolated confinement and yes, I am still here. My bloods have risen which is great, my sore throat is gone thanks to the huge doses of IV antibiotics! Although I am still suffering bad reflux causing nausea and today I had my first lot of hair loss.
My nurse informed me that after today my hair will now start to fall out very quickly and will be completely gone within seven days. I did cry a little bit but it was more the shock that reality was really kicking in and I was now going to be visibly sick. I also have have a change of skin colour. I am now getting a bit of a sallow complexion. My eyes are yellow and my face is even paler than usual.
The room I am now in at SJOG is so beautiful. Compared to what I had at SCGH this place is like a hotel. The floors are carpeted too so its not cold and unfriendly. I have a view of a gazebo which has a pond and I look out on to Salvado road which is great because its so close to home that I feel like I am not that far away. All of the nurses have been tossing up whether my infuser port is infected as in infected inside my chest as well as the infected lesion on my skin which is not a good thing. If this is the case they will need to surgically remove the port, use my arm veins for my second chemo session next week, then again another surgery to replace a new port into the same spot. I cried when I heard this news because its just too much trauma for me and my body is already in a bad way. I cannot imagine this to be happening. I just don’t deserve all this bad luck. I am thinking extremely positive and just telling myself its just the skin lesion I will be fine. 🙂
Speaking of which, whilst sitting here in my room, my IV port surgeon just came in to visit me. He said he thinks it will just be a skin lesion but we will have to keep up with the IV antibiotics over the weekend and see how well it clears up – if so. If it doesn’t make much progress this will show that the tube line inside is infected and yes, he will have to remove it and replace another one. All prayers and positive thoughts my way please everyone…
over the weekend – Great, so this means I am here till monday now. I am crying as I am typing this because I am missing home so badly. I miss Adam even though he has been here for 8 hours at a time (yesterday) and visiting 2 – 3 times a day, its still not completely the same. I miss sleeping together, eating at home and playing with Brooklyn. I have a feeling Ad will be a bit devastated about this because we thought I would be coming home tomorrow. 😦
Life is just not fair at all. I’d do ANYTHING for my normal life back. Don’t ever take life for granted.