Hello fellow readers. This is becoming a Wednesday night ritual! Unfortunately a yoga session and a chamomile tea are not going to work for me tonight as things have taken a turn in the wrong direction.
Things have been going along so very well, with Mark getting stronger and weller (is that a word?) each day. Last week's yoga session gave him some grief with his left knee and at first there was a panic. OMG, it's the left side, what could this mean? Once we calmed down we released it was probably some over stretching from the yoga aggravating an old injury. Phew...take some Nurofen and rest the leg is probably all we need to do.
But it got us thinking. Who do we ring if we have a problem? The surgeon, the radiologist, the oncologist or our local GP? Who is across everything? The answer, well no one! I rang the GP and asked if they knew what had happened and their answer was "we know he was admitted into the Flinders and discharged, but we don't know what for". In my anger, I opened my mouth and I was unable to control myself; "So you don't know he was admitted because he had a seizure, which turned out to be a brain tumour, which turned out to be stage 3 cancer? Well good, then I guess you will be unable to help us out, thanks" and I hung up! Whoops, a little harsh.
We have insurance papers to fill out and they need to be completed by a doctor in charge and who is across everything. I was desperate, so I rang the oncology nurse who said I could call any time if I had a problem or question. It was good to talk to someone who understood and she managed to calm me down quite a bit and the paperwork issue was sorted.
Days later and we were having some really good days and Mark even helped me out a bit in the garden and together we edged and mowed the lawns (he edged, I mowed) did a little pruning (I did the bottom, he did the top) and together we cleaned and fixed the aquaponics system. His need to "have a lay down" became less and less and I was confident leaving him home alone so he could write a little code or do whatever it was he wanted to do.
Spirits were high until yesterday morning (Tuesday). We had our normal breakfast of scrambled eggs and Mark was commenting on how good he felt after the work he had done in the garden. He mentioned that he had been very careful not to over do it and this was the most amount of physical exercise he had done since the operation. We all cheered and thought that things were only going to get better from here, and why wouldn't they? I had been making him special juice drinks, vegan meals, green tea and lemon juice drinks before breakfast. We were following the right nutritional path one should take when one faces cancer. He was off all medication with the exception of a low dose of "Kepra" an anti-seizure medication. His body was getting strong and getting ready for the 6 weeks of radiation that is due to start on the 26th November.
After breakfast Mark went into our bedroom (yes he is back sleeping with me, rather than the man-cave) and started making the bed, while I cleaned up the kitchen after breakfast. Next thing I heard him call out "IRENE!" in a strange, deep and desperate voice. I dropped everything and went running. He was laying on the bed having a mild seizure. "It's coming" he tells me and I run and grab the phone. I feel his left hand and it is ice cold and wet and clammy. We talk and breathe through it and after a few minutes he tells me "it's passed".
So now not feeling so confident, Mark comes along to our Kindermusik session. Thankfully, we only need to be in the room for a short time and then we leave and can have a cuppa. I took along some green tea and we sat outside in the sunshine and talk. Why, why, why is this happening? We went over and over things. What do we do? Who do we call? Do I take him back to the Flinders and have to sit around in Emergency all day? At least he was feeling better now and perhaps we could go out for lunch or something as a friend had been looking after Sebastian every Tuesday for a couple of hours.
We finish the music session and drop Sebastian off at his friends house for his "play date" and I jump back into the car. "So, where would you like to go?" I ask. "I think I just want to go home and have a lay down" was the reply. Oh...ok. Once home, he disappears into his cave and I pickup the phone and ring the oncology nurse again. She tells me what anyone would tell me, if it happens again, I should really take him back to hospital. I decide I would see how things went and I make myself a nice hot cappuccino, but before I could even sit down to enjoy it, I hear a familiar car in the driveway which could only be Mark's Dad and brother arriving from Mt Gambier.
You see, Mark's Dad (Allan) had also had a week in hospital with a chest infection and although the Mt Gambier hospital cleared him to go, they wanted him to come to Adelaide to have his heart checked out, the NEXT DAY! So they were here, calling in to say hi before heading off to Flinders Private for an appointment and then a scan. I fill them in on the mornings' events and soon they headed off. Mark emerged feeling fine and seemed quite happy and I made him a coffee as I had done earlier for myself. He took one mouthful before calling out again. I help him back into our bedroom to lie down, grab the phone and while holding his hand, I rreluctantly ring 000.
The ambulance arrived in good time but of course the seizure had passed. We explained everything and we had much discussion as to what to do next. We were very fortunate to have a very proactive Ambo Officer who asked for names of doctors and he started making phone calls. He rang the GP and had similar experiences as I had several days before. No point going there! Then he started making calls to the hospital and he had moved a mountain or two. He had managed to organise for Mark to be admitted straight into hospital, fast tracked in other words and had spoken to the head Neurosurgeon who was in charge of Mark's condition. All we had to do was go into Emergency and "check in" and he would be taken straight up to a ward!
So we spent the afternoon at the Flinders and he ended up back in the Nero-ward. Well, at least everyone knew him and I was sure he would be in good hands. It was after 5 before I could finally pickup Seb from his supposed 2 hour play date. Both exhausted, I made us both pizzas (by Seb's request) and we watched "Finding Nemo" while eating Pizza and Icecream on the couch. Too tired to do anything else, I later watched another movie while having several glasses of wine before falling into bed. Tomorrow would be a better day!
This morning Sebastian and I were in good spirits after a good night's sleep and I explained to him that we had an early start with swimming and then we would spend the morning with Dad and Pa (who also ended up being admitted) at the hospital. Seb started a higher grade swimming class (so proud) and did really well and we soon headed in to the hospital. During our time with Mark, he had another seizure. I grabbed a nurse and explained that he was having a seizure-right now! The nurse (male) watched while Mark explained what was happening and while he took his own pulse! The nurse just watched and make some joke and then walked away once Mark had said it had passed. You see, they had upped his Kepra medication, so the seizures were milder and you couldn't see anything happening, but Mark could feel it and explained everything. I gave Mark some paper and a pen and told him to keep a record of these events. He had already been doing this, but the information was on his phone. "Transfer it to paper" I ordered.
His brother arrived to visit so I thought it was time to "swap" and go and see Pa. Sebastian and I headed off the long journey down, across and back up to level 5 in Finders Private, only to find that they had taken Allan off for his Angeogram. Bugga! Ok, let's go to the Oncology department and tell the nurse what has happened. I tell her about the seizures and that Mark is back on the steroid drug call Dexamethazone (Dex for short). This is not good news as it will mean that he will be rejected for the trial if he is on Dex, but she tells me that we can still get the drug if he is deemed suitable, but "off-trial". Satisfied, Seb and I grab some lunch and head back to see Mark again.
I mentioned our discussions to Mark and he looks grim when I tell him that he will not be able to go on the trial for the chemo drug. I wonder why this is an issue as I thought, as long as we get the drug, what does it matter if it is through the trial or not. He tells me, or rather, reminds me that this drug is still on trial and therefore not covered by any PBS or medical insurance. That's ok, it costs what; 10 or 20 thousand right? He says, try 60 thousand. Oh SHIT!!
So tonight I went back to the hospital and I find out that Mark has had 5 seizures today. That's 2 more than yesterday. The nurse comes to do "Obs". I start telling her that Mark has not seen any of the surgeons who are in charge of his condition and that he has had 5 seizures and his medical notes only have one listed. I ask if he can have an appointment with the head neurosurgeon, the one who told him to come in to hospital and who had arranged the bed, but had not come to see him. It was time to get firm and ask some questions. He was not getting the care he needed. No one bothered to ask about his seizures, his medications were hours late and no doctors came to check on his condition. I was furious and ready to check him out and bring him home. There was nothing the nurses were doing that I couldn't do better at home. I wrote out a huge list of questions for Mark to ask doctors in the morning. I decided it would be best if I didn't go in to the hospital first thing as I would just end up pacing up and down the hallway with veins in my head pulsating! Best I stay home and be ready to come in to the hospital at a minute's notice....
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