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!
Saturday 22 December 2012
Monday 10 December 2012
Post Number 13 - Breaking Point
Hello fellow readers! I always know when I need to write a blog as I feel all the emotion build up inside and I spend all day trying to keep it together. Talking to people does not help me as everyone seems to have their own advice to give me and advice is not what I need. My blog allows me to express myself without judgement and without talking back to me. I can pour out my thoughts and emotions and release them, then start fresh again in the morning.
It's been a tough week for us both, but mainly for Mark. Going back onto the Dex brings with it the side effects, the main one being, inability to sleep!
We always knew that this drug was going to be tough. Each day that he was on it, he achieved less and less sleep each night. He tried everything including having half a tablet in the morning and half at lunch time, one full tablet in the morning and nothing for the rest of the day, yoga, meditation CDs, boring podcasts, sleeping back in his "man pad" you name it. He even reduced the Dex to half a dose over the weekend, but still no relief came. Each night the total amount of sleep reduced. By Friday he was starting to show signs of depression again, so I suggested we go in to one of his old work places to "catch-up with the guys" so to speak. He had also come up with the same idea as our son attends a child care centre just a block away.
The visit to work proved invaluable and shows just how important male company is in these difficult times. Unfortunately he has not had many male visitors of late and his life tends to revolve around radiotherapy, doctor appointments, playing with Sebastian and afternoon rests. I know he is getting sick of this and he needs something else to occupy his thoughts. His tiredness prevents him from trying to write any code or even sit at his computer. He has watched all his downloaded TV programs and playing playstation on his own is not much fun. All that and no sleep... no wonder he is depressed. I'm depressed just writing about it.
By now his total amount of sleep over a nightime period was zero and breaking point came Sunday night. He was so exhausted and he knew that this put extra pressure on me. I too was becoming exhausted and frustrated. I was frustrated that he couldn't do the smallest of things like set the table for dinner and he was frustrated that he felt so helpless and good for nothing.
That night after Sebastian had gone to bed, we talked, cried, talked and cried some more. We came up with a plan to go early to radiotherapy and beg to see a doctor, any doctor as we could not wait until his next appointment on Thursday. He needed some relief from this tiredness. A sleeping tablet that would help him sleep but not make him feel drowsy, disoriented and feel like rubbish the next day as the tablet I had given him weeks ago had done.
After another sleepless night, we had our breakfast and headed in to the hospital. I had explained to Sebastian that Daddy was feeling very unwell and that we needed to talk to a doctor as well as have our usual radiotherapy treatment. I needed him to be extra good and extra quiet while we spoke to the people we needed to speak to. Receptionists, radiotherapy nurse, radiologists and the doctor all saw this broken man's tears and all felt his pain and all did what they could, albeit very little. Discussions with the doctor resulted in a script for a sleeping pill. The discussions were a little weird, contradictory and just downright...... j?*%^$# frustrating? I can't even explain it, but let's just say, we don't like this doctor very much and we later discussed our own plan for what Mark would do next.
So tonight we will do some yoga, even though I know Mark doesn't want too and he has muscle weakness in his legs and arms and he has a headache and he feels like sh*&$. But I need him to try. Just do some of the breathing and the basics. He needs to sleep, please, please let him sleep.
It's been a tough week for us both, but mainly for Mark. Going back onto the Dex brings with it the side effects, the main one being, inability to sleep!
We always knew that this drug was going to be tough. Each day that he was on it, he achieved less and less sleep each night. He tried everything including having half a tablet in the morning and half at lunch time, one full tablet in the morning and nothing for the rest of the day, yoga, meditation CDs, boring podcasts, sleeping back in his "man pad" you name it. He even reduced the Dex to half a dose over the weekend, but still no relief came. Each night the total amount of sleep reduced. By Friday he was starting to show signs of depression again, so I suggested we go in to one of his old work places to "catch-up with the guys" so to speak. He had also come up with the same idea as our son attends a child care centre just a block away.
The visit to work proved invaluable and shows just how important male company is in these difficult times. Unfortunately he has not had many male visitors of late and his life tends to revolve around radiotherapy, doctor appointments, playing with Sebastian and afternoon rests. I know he is getting sick of this and he needs something else to occupy his thoughts. His tiredness prevents him from trying to write any code or even sit at his computer. He has watched all his downloaded TV programs and playing playstation on his own is not much fun. All that and no sleep... no wonder he is depressed. I'm depressed just writing about it.
By now his total amount of sleep over a nightime period was zero and breaking point came Sunday night. He was so exhausted and he knew that this put extra pressure on me. I too was becoming exhausted and frustrated. I was frustrated that he couldn't do the smallest of things like set the table for dinner and he was frustrated that he felt so helpless and good for nothing.
That night after Sebastian had gone to bed, we talked, cried, talked and cried some more. We came up with a plan to go early to radiotherapy and beg to see a doctor, any doctor as we could not wait until his next appointment on Thursday. He needed some relief from this tiredness. A sleeping tablet that would help him sleep but not make him feel drowsy, disoriented and feel like rubbish the next day as the tablet I had given him weeks ago had done.
After another sleepless night, we had our breakfast and headed in to the hospital. I had explained to Sebastian that Daddy was feeling very unwell and that we needed to talk to a doctor as well as have our usual radiotherapy treatment. I needed him to be extra good and extra quiet while we spoke to the people we needed to speak to. Receptionists, radiotherapy nurse, radiologists and the doctor all saw this broken man's tears and all felt his pain and all did what they could, albeit very little. Discussions with the doctor resulted in a script for a sleeping pill. The discussions were a little weird, contradictory and just downright...... j?*%^$# frustrating? I can't even explain it, but let's just say, we don't like this doctor very much and we later discussed our own plan for what Mark would do next.
So tonight we will do some yoga, even though I know Mark doesn't want too and he has muscle weakness in his legs and arms and he has a headache and he feels like sh*&$. But I need him to try. Just do some of the breathing and the basics. He needs to sleep, please, please let him sleep.
Saturday 1 December 2012
Post Number 12 - Some Christmas Cheer
It's Sunday and Mark's first week of Radiotherapy is over. So far he has been handling it very well, with the exception of an irritating type of headache behind his right eye. This was really starting to bother him as well as a slight amount of nausea.
Included in the week of radiation appointments were two other appointments with a Neurologist and with the Radiologist doctor. The Neurologist was pleased with his progress and dismissed the headache as panadol would bring relief, albeit only short-term. The Radiologist however was very quick to put him back on to the Dexamethozone. Although it was not great news, he insisted that his symptoms required this drug and that once the treatment was over, and his body recovered, the drug would be slowly reduced and stopped.
Disappointed with this, the mood quickly changed when he mentioned the great news about the regrading of his tissue sample. We quickly said, "Oh yes, but they would only have had a small amount of the sample and not the whole mass that was removed". The doctor shook his head smiling and said, "Oh no, they had the whole box and dice, just as the lab in Adelaide did".
We looked at each other totally stunned. Could this really be true? Is this really a downgraded diagnosis? The doctor continued to say that he thought one of the other doctors had resubmitted the sample to the Adelaide Lab for a another opinion to be totally sure, however, the overseas lab had tested it several times by several different technicians so he believed their diagnosis to be correct. That said however, he discussed with Mark that he would leave the treatment as is for the moment as it was better to over-treat than under-treat and this way we can be sure it is all gone and zapped into lifelessness (the tumour cells, not Mark!).
So maybe Christmas might not be so bleak after all and we can celebrate, as we have so very much to be thankful for!
Included in the week of radiation appointments were two other appointments with a Neurologist and with the Radiologist doctor. The Neurologist was pleased with his progress and dismissed the headache as panadol would bring relief, albeit only short-term. The Radiologist however was very quick to put him back on to the Dexamethozone. Although it was not great news, he insisted that his symptoms required this drug and that once the treatment was over, and his body recovered, the drug would be slowly reduced and stopped.
Disappointed with this, the mood quickly changed when he mentioned the great news about the regrading of his tissue sample. We quickly said, "Oh yes, but they would only have had a small amount of the sample and not the whole mass that was removed". The doctor shook his head smiling and said, "Oh no, they had the whole box and dice, just as the lab in Adelaide did".
We looked at each other totally stunned. Could this really be true? Is this really a downgraded diagnosis? The doctor continued to say that he thought one of the other doctors had resubmitted the sample to the Adelaide Lab for a another opinion to be totally sure, however, the overseas lab had tested it several times by several different technicians so he believed their diagnosis to be correct. That said however, he discussed with Mark that he would leave the treatment as is for the moment as it was better to over-treat than under-treat and this way we can be sure it is all gone and zapped into lifelessness (the tumour cells, not Mark!).
So maybe Christmas might not be so bleak after all and we can celebrate, as we have so very much to be thankful for!
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