It's been 13 days since my last post and I have so much emotion built up inside, people just have to say "Merry Christmas" and I burst into tears! We were going along so well as we changed our Radiologist Doctor and our new doctor is so wonderful. As a woman she is so compassionate and understanding and explained so many things to us, that our list of questions was answered without asking a single question! Now that's the kind of people you want to have in your treatment circle.
The Dex was reduced and even stopped altogether, but that didn't last long. But with a new script for 0.5mg tables vs 4mg, we were on our way to self-regulating a dose that would suit Mark's needs. Things were ticking along ok, although each day I was getting more and more tired and lacking motivation. The days are getting so monotonous, everyday the hospital, every day drive from here to there; doctors' appointments, Centrelink, Medicare, Drop off Seb here and then pick him up again, drive, drive, drive....I'm so sick of driving!
I don't feel like cooking, I don't feel like cleaning, I don't feel like gardening, I don't feel like juicing, I don't feel like watering, I don't feel...anything. There is just numbness inside. This is supposed to be the time to be planning the "big day of the year", gift giving, writing letters, baking etc etc. Sure I have done some of these things, but my heart isn't in it. I have done the bare minimum or my bare minimum. This is not what I wanted for Sebastian. I feel like I have failed him although I know deep down I haven't and he is fine. I guess that's the problem with having such high expectations, they are very easily broken.
Just when I thought I couldn't feel any lower, while hanging out the washing, I hear Sebastian screaming and crying. He was supposed to be having his afternoon rest and he had been protesting the house down. Sebastian and I have been butting heads of late. Nasty comments, tantrums and lots of "No" and "I don't want to". Mark and I had also been butting heads as he was questioning my words and tone towards Sebastian and I was trying to defend myself. In case you didn't already know, I once had a husband who blamed me for everything that went wrong and I guess I have never really recovered from those times and still believe that most things are somehow my fault. Even if I try to defend myself, I really believe that I am to blame.
I leave the serenity of the washing only to find Mark in the hallway saying he was not feeling well. I quickly get him to lie down on the bed while also consoling Sebastian who is sobbing and asking me to read his story. With all of us on the bed (Else included) I get to the bottom of all this commotion. Mark had been reading Sebastian a story before rest time and 2 pages in, he couldn't read the words! Rather than look at the whole sentence and read it, he could only focus on one word at a time, then speak the word, before then looking at the next word. I stayed with him briefly, but could soon see that whatever had happened, had passed. I finished reading the book for Sebastian and left him to have his afternoon sleep and then went back to Mark. He was ok, only tired, so I left him to rest as well. Convinced it was nothing to be too worried about, I went back to my long To Do List, including 2 weeks worth of ironing.
A few hours later and Mark emerged. He seemed rather agitated, so we talked. He was panicked that this was the start of something bigger and that these kinds of episodes would become more frequent and possibly even permanent. I reminded him of just how much his body is going through with Radiotherapy and that I was sure things would settle down. Half hour later and Sebastian emerged and with company expected very soon, I decided a bit of TV would keep Sebastian settled while I put some things together in preparation for our guests. But before I could say "Bob's ya Neighbour", Mark called out to me again saying that he was "feeling funny again". "Sit down" I call out, so he sat right there on the bedroom floor! "I meant on the bed, but ok, if that works for you, I guess I can sit on the floor too!" I thought.
I tried ringing the Adelaide Radiotherapy office, but they were closed and their "oncall doctor" had a voice mailbox that was full and therefore not able to record any more messages. I had no choice, I had to take him back to hospital and as our guests arrived via our back door, I quickly stopped them, turned them around and sent them home again over the back fence, only this time with Sebastian in tow. It all happened in a manner of seconds, as you would hope it would in times of semi-urgency.
When we arrived at the hospital, I was relieved to see an almost empty waiting room and only one ambulance in the parking bay. It took around 40 minutes to get in and while explaining to the male nurse about Mark's symptoms, he had another episode. It was so subtle that most people wouldn't notice, but I noticed it straight away. His speech was slowed and you could almost see the strain in his face trying to get words out, but disguising it very well, albeit not meaning too.
I stayed with him for a while, but had to walk outside to make phone calls as there was zero phone reception. After explaining the situation to 3 different people, I had made my own diagnosis. Dr Irene says; "The problem is not a permanent one, but one caused by too much inflammation on the brain, applying pressure to the area that controls speech and cognition. You will need to increase your dose of Dexamethazone to as much as you can handle, the swelling will go down and your symptoms will go away. A CT Scan however, will confirm this". Maybe I was a doctor in a past life, or maybe it's just common sense when you relax and think about it calmly.
Christmas seems to be the worst time of year to need emergency treatment. When I left the hospital at 8.30pm, there were 6 ambulances in the parking bay and the waiting room was filling up. It was now unlikely that he would see a CT Scanner before the light of day, so I went home to grab some things for Mark and to throw some things over the fence for Sebastian so that he could now have an unplanned sleepover!
That night, exhausted, I should have gone straight to bed, but instead I decided a box of chocolates and some wine would somehow fix all my problems and that I was entitled to indulge myself in such trying circumstances. No wonder I am overweight! Still working on that reflex action!
Although my diagnosis was 100% correct, a CT Scan did not show any inflammation, but maybe that was due to waiting 17 hours for the CT Scan to happen!! With the CT Scan done, it then took a further 5 hours for a doctor to visit him, tell him the same information as Dr Irene and then discharge him.
Tomorrow is Christmas Eve, Happy Christmas everyone! I wish you a healthy one and enjoy every moment you have with everyone you love as you just never know what's around the corner!
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