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!
Wednesday 28 November 2012
Post Number 11 - Let the Treatment Begin
It's Wednesday again and by now you are probably wondering what happened at Friday's appointment? Well, in the words of the doctor..."I have some good news and some bad news, which would you like to hear?" Now if you are like me, you would want to get the bad stuff out of the way, so you can then relish the good news, so here it is; "You are not on the trial as your DNA is not suited to this drug and chemo will not be an option for you. However, good news is, the lab in Europe classed your tissue sample as a grade 2 tumour and not a grade 3." (grade 2 being a slow growing tumour and not the aggressive type of a grade 3 or 4).
I punched Mark (lovingly) in the arm and said "you see?" Miracles do happen and this type of tumour makes more sense to us as we moved to more of a plant based diet around 6 months ago and it seemed impossible that a tumour would form while eating and living such a healthy lifestyle.
But let me rewind a little... While waiting a gruelling hour in the waiting room to see the Oncologist, I saw one of the staff approach a lady who had been waiting a while. In the crowded waiting room she pulled up a chair and apologised to the lady as she would not be requiring their services! The lady looked puzzled and asked why. "Because you don't have cancer!" was the reply. I nearly fell off my chair. "Did you hear that?' I whispered. Mark looked up from his car magazine and grunted. "She just got told she doesn't have cancer, isn't that unreal?" He just shrugged his shoulders. So when the Oncologist told us the test results from the overseas lab I couldn't help but believe it was another one of those many "signs".
We left the centre quite elated and made our way into the city to pick up Sebastian from Childcare. I was pumped and suggested we head into the city and to take Sebastian to see Father Christmas. It's an excellent time of day (5pm) as there is generally no queue. I was right and we went straight in and Sebastian had his 5 minutes with Santa and we walked away with our 2012 Christmas Photos. Another job done...tick!
Still happy about the news I was itching to access Facebook to tell everyone the good news. The Tumour is grade 2..Hooray! Let's buy some wine and have a celebration. But my excitement was popped like a needle to a balloon when Mark told me, "well it doesn't change anything and I would rather not say anything to anyone". Later, with Sebastian in bed we discussed the situation and I guess he was right. The lab in Adelaide would have had all of the matter that had been removed and they would have tested several parts of this mass. The overseas lab would only have been sent a small amount of tissue to test the DNA and that part may well of been a grade 2, but there are still grade 3 (aggressive) parts and they have to give an overall grading of the worst parts and hence base a treatment plan on the higher graded tumour samples.
The following day our spirits were still damp like a wet fish, but Sebastian had begged me to go to the beach. The weather forecast was good and I knew that it would do us all good to have some fresh coastal air, even though I had woken with a mild migraine and Mark wasn't feeling much better. We packed up and left early and enjoyed a fabulous morning at the beach. Else was perfectly behaved and had the time of her life running and splashing in the water. Sebastian also had a wonderful time playing in the water, building sand castles and flying his kite. The weather was perfect, not to hot, not to cold. After two hours of perfectness, we decided it was time to pack up as it was getting time for Mark's juice and the sun was starting to get a little stronger. But when we told Sebastian it was time to leave he threw the biggest tantrum imaginable. He screamed like his limb had been broken and venomously screamed "No, I just want to play" at the top of his lungs. Hard to believe what this angelic child can turn into when things don't go the way he would like them too!
So with screaming banshee protesting several metres away, we packed up and bid him goodbye as we headed back to the car. Sebastian screamed and cried behind us, eventually calming down enough so that we could stop and have a rational conversation with him. But it was too late, the mood had slumped right back down again.
Sunday morning and it was time for the three hour Yoga and Mediation session that I had booked several weeks ago. Migraine in fine form, Mark quite flat and depressed, we dropped off Sebastian and headed to the venue. When we walked it we must of looked like we were carrying the world on our shoulders. I looked that bad I looked 10 years older, old enough in fact to be Mark's Mother, or so the Yoga teacher thought! We took our positions at the back of the room and started the session by just lying on our backs and being still with some rhythmic chanting music beating in the distance. It wasn't long before my emotions could not be held back anymore as this was the first time I had been "still" for quite a while. Tears flowed while the instructor gave visual directions and every time I thought I had myself under control, they flowed again.
But by the end of this part of the session, it seemed that it was all out and I was able to stand up and continue to the next phase of yoga poses. We might have been beginners, but we kept up with everyone in the class. A few hours in and we had to pair up and do some poses together, facing each other, feet touching. Mark's feet started to wriggle and when I looked up at his face, I saw a mischievous smile. I smiled back and I could see and feel that our black clouds had lifted. By the end of the three hours, the instructor talked to us and apologised for her mistake and told me that I "looked young now" and indeed I felt young again. We both felt young, fit and healthy again, how amazing! Just love Yoga when you can find the right instructor!
Monday...day one of thirty Radiotherapy treatments! The appointment at 11.30am, we had most of the morning at home with Sebastian before we needed to go. I'm not totally sure what Mark did that morning, but it was virtually zero. He hadn't been near his computer for days saying that he was "not in the mood for programming" or some such. On the way to the hospital I had some stern words for him and told him it was time to move his butt into gear and start writing some code and DOING SOMETHING! Yoga, meditation, breathing, exercise bike, exercise machine...anything, something!! And that afternoon.....HE DID!
I punched Mark (lovingly) in the arm and said "you see?" Miracles do happen and this type of tumour makes more sense to us as we moved to more of a plant based diet around 6 months ago and it seemed impossible that a tumour would form while eating and living such a healthy lifestyle.
But let me rewind a little... While waiting a gruelling hour in the waiting room to see the Oncologist, I saw one of the staff approach a lady who had been waiting a while. In the crowded waiting room she pulled up a chair and apologised to the lady as she would not be requiring their services! The lady looked puzzled and asked why. "Because you don't have cancer!" was the reply. I nearly fell off my chair. "Did you hear that?' I whispered. Mark looked up from his car magazine and grunted. "She just got told she doesn't have cancer, isn't that unreal?" He just shrugged his shoulders. So when the Oncologist told us the test results from the overseas lab I couldn't help but believe it was another one of those many "signs".
We left the centre quite elated and made our way into the city to pick up Sebastian from Childcare. I was pumped and suggested we head into the city and to take Sebastian to see Father Christmas. It's an excellent time of day (5pm) as there is generally no queue. I was right and we went straight in and Sebastian had his 5 minutes with Santa and we walked away with our 2012 Christmas Photos. Another job done...tick!
Still happy about the news I was itching to access Facebook to tell everyone the good news. The Tumour is grade 2..Hooray! Let's buy some wine and have a celebration. But my excitement was popped like a needle to a balloon when Mark told me, "well it doesn't change anything and I would rather not say anything to anyone". Later, with Sebastian in bed we discussed the situation and I guess he was right. The lab in Adelaide would have had all of the matter that had been removed and they would have tested several parts of this mass. The overseas lab would only have been sent a small amount of tissue to test the DNA and that part may well of been a grade 2, but there are still grade 3 (aggressive) parts and they have to give an overall grading of the worst parts and hence base a treatment plan on the higher graded tumour samples.
The following day our spirits were still damp like a wet fish, but Sebastian had begged me to go to the beach. The weather forecast was good and I knew that it would do us all good to have some fresh coastal air, even though I had woken with a mild migraine and Mark wasn't feeling much better. We packed up and left early and enjoyed a fabulous morning at the beach. Else was perfectly behaved and had the time of her life running and splashing in the water. Sebastian also had a wonderful time playing in the water, building sand castles and flying his kite. The weather was perfect, not to hot, not to cold. After two hours of perfectness, we decided it was time to pack up as it was getting time for Mark's juice and the sun was starting to get a little stronger. But when we told Sebastian it was time to leave he threw the biggest tantrum imaginable. He screamed like his limb had been broken and venomously screamed "No, I just want to play" at the top of his lungs. Hard to believe what this angelic child can turn into when things don't go the way he would like them too!
So with screaming banshee protesting several metres away, we packed up and bid him goodbye as we headed back to the car. Sebastian screamed and cried behind us, eventually calming down enough so that we could stop and have a rational conversation with him. But it was too late, the mood had slumped right back down again.
Sunday morning and it was time for the three hour Yoga and Mediation session that I had booked several weeks ago. Migraine in fine form, Mark quite flat and depressed, we dropped off Sebastian and headed to the venue. When we walked it we must of looked like we were carrying the world on our shoulders. I looked that bad I looked 10 years older, old enough in fact to be Mark's Mother, or so the Yoga teacher thought! We took our positions at the back of the room and started the session by just lying on our backs and being still with some rhythmic chanting music beating in the distance. It wasn't long before my emotions could not be held back anymore as this was the first time I had been "still" for quite a while. Tears flowed while the instructor gave visual directions and every time I thought I had myself under control, they flowed again.
But by the end of this part of the session, it seemed that it was all out and I was able to stand up and continue to the next phase of yoga poses. We might have been beginners, but we kept up with everyone in the class. A few hours in and we had to pair up and do some poses together, facing each other, feet touching. Mark's feet started to wriggle and when I looked up at his face, I saw a mischievous smile. I smiled back and I could see and feel that our black clouds had lifted. By the end of the three hours, the instructor talked to us and apologised for her mistake and told me that I "looked young now" and indeed I felt young again. We both felt young, fit and healthy again, how amazing! Just love Yoga when you can find the right instructor!
Monday...day one of thirty Radiotherapy treatments! The appointment at 11.30am, we had most of the morning at home with Sebastian before we needed to go. I'm not totally sure what Mark did that morning, but it was virtually zero. He hadn't been near his computer for days saying that he was "not in the mood for programming" or some such. On the way to the hospital I had some stern words for him and told him it was time to move his butt into gear and start writing some code and DOING SOMETHING! Yoga, meditation, breathing, exercise bike, exercise machine...anything, something!! And that afternoon.....HE DID!
Thursday 22 November 2012
Post Number 10 - Home is where the Healing is
The following day (Thursday) Mark started to improve and he managed to get through the entire day without a seizure. Doctors came to see him and further tests were finally done (ECG), things were looking up and spirits high. Mark was happy, off the dexamethazone, more confident and felt strong enough to walk around the hospital without the safety net of a wheelchair.
By Friday however, his spirits began to slump. Yet another sleepless night in the hospital with really sick patients all around him and his needs again being ignored due to more dependant patients. I walked into the hospital around lunchtime, Sebastian at childcare, expecting to take him home. Instead Mark informed me that he may have to stay another day or two as he still had no results from the ECG and the neurologist (different from the neurosurgeon) still hadn't been to see him.
I could see how depressed he was becoming and I couldn't take it anymore. I wanted, no NEEDED, to have him home so that I could cook him plant based foods, make him his morning lemon juice and make him fresh anti-cancer juices twice a day. This place was no environment for someone who needed to heal.
Frustrated, I asked at the nurses station if I could "check him out myself". They could see how upset I was as I fought back tears and while they said that technically I could check him out, medically it was not a good idea. We walked away and headed for the lift and I burst into tears. I cried all the way to the Cancer Research Centre which we had discovered had the best cafe (T-Bar) in the entire Flinders Complex. We ordered our drinks and we talked or rather Mark talked and I sniffled.
Looking across the room we noticed one of Mark's Neurosurgeons. I joked that I should go over and talk to him! But of course that was not the right thing to do. These people are busy and under a lot of pressure and come here for a break, as I think this cafe is the best kept secret! A little while later, our cups empty, we reluctantly stood up and started to leave the table. I looked over to the Neurosurgeon's table, only to notice a second neurosurgeon who was also familiar with Mark's case. They looked up at us and nod as we pass by, and we nod back, but we keep walking.
At the door to leave the centre a voice in my head said "what are you doing? The doctors are right there, do something!!" I stopped in my tracks, looked at Mark and said "I'm sorry honey, I just have to say something" and I about-faced and bolted back to their table. I apologised for interrupting them and begged them to please pull some strings to allow Mark to go home. They both looked surprised and had a discussion right in front of me and told me that they would make something happen.
The hours ticked away fast and before I knew it, I had to leave to pick Sebastian up from childcare. I was still hopeful that he would be "released" from this prison. Before long I had the text message I had been waiting for and pickup arrangements were made. HE WAS COMING HOME!
I told Sebastian the good news and before long we were all home again. Mark's Dad however, was not so fortunate and needed to continue his stay in hospital while more tests were done and medication tweaked. It seemed they were doing every test imaginable and changing drugs and doses regularly until they found a mixture (or potion) that worked. It would be another 4 days before he would eventually be released and allowed to return home to Mt Gambier.
After just one good night's sleep, Mark awoke a fresh new person and while the weekend was a little up and down, daily improvements could be noticed. It's Thursday now and he has been home for 6 days and he seems perfectly normal. Sure he may get a little tired still, but he is back to himself again, sleeping better than ever and feeling strong. He is seizure free, has written a little code and even washed his car today! It is hard to remember that he is still sick as there is only the scar on his head to remind us that we still have a long way to go.
I on the other hand, have not been doing so well. The stress and short nights sleep starting to catch up with me. All week I have been waking around 5am and have been unable to get back to sleep. Today I fell back to sleep once Sebastian and Mark got up, and went into a deep deep sleep. I awoke at 8.30 and I needed to get up as I had committed to a beach walk with a friend and our kids. But I lay there heavy, unable to get up, yet willing and yelling at myself to get up. "You'll feel so much better doing the walk, you always do", said the voice in my head. Reluctantly, I forced myself out of bed. Mark prepared our scrambled eggs and Sebastian and I headed off for the fresh coastal air. The weather was perfect, the beach looked amazing and off we went.
Home again at lunch time, there was no time to rest as I needed to make lunch for everyone and get Seb into bed for his afternoon snooze (thank goodness he still has these). Then a nice long hot shower. There is something about having your first shower in the middle of the day! It's un-rushed, relaxing and the refreshing feeling of the water hitting your skin is pure magic. But even after a morning full of the sun's vitamin D and the magic of a mid-day shower, my spirits had not lifted.
On Monday I had made several phone calls to organise three different doctors appointments and to our accountant. All had told me they would get back to me and not one of them had. I made one phone call after another, loading up our diary's with appointments, but the one office I could not make contact with was the chemo drug trial. I rang four times throughout the afternoon with no answer, yet the nurse that I had been talking with on several occasions, "promised" me that she would call me the minute she had the lab results back. PROMISE...it's a very strong word I think. It's one that I ever use unless I really really mean it. If she had used any other word, perhaps I would not feel so upset and betrayed, because I know those results are in! Mark received a phone call several days ago to advise him of an appointment at the Cancer Research Institute for Friday at 2pm from a person we had never spoken to. He did not advise what the meeting was about or who it would be with or how long it would go for. Immediately we started to speculate, "he is not on the trial, they never tell you bad news over the phone", but why make us wait until Friday? Maybe he is on, but are waiting until Friday to see if he is stable and seizure free (another condition of the trial). I had to know, so I rang and rang until finally while talking with the Radiation Nurse, she let slip that "there is no trial" and that Mark should just talk to his Oncologist Dr Sukamara! This was yet another name we had never heard of! So I rang the Research Centre's main number and asked who this doctor was. He is one of the Oncologists but not part of the Trial's Team. Ah ha....so, it seems we are not on the trial then.
So tomorrow we find out for sure and hopefully a treatment plan will be discussed. Either way, chemo drug or not, we have trust that this is the right thing. We have to trust that with everything we are doing; radiation, yoga, plant based diet, meditation and juicing, that we are killing this thing from every angle and the chemo drug is just not needed. It's out of our control now, time to turn up the "faith-o-meter" and believe.
By Friday however, his spirits began to slump. Yet another sleepless night in the hospital with really sick patients all around him and his needs again being ignored due to more dependant patients. I walked into the hospital around lunchtime, Sebastian at childcare, expecting to take him home. Instead Mark informed me that he may have to stay another day or two as he still had no results from the ECG and the neurologist (different from the neurosurgeon) still hadn't been to see him.
I could see how depressed he was becoming and I couldn't take it anymore. I wanted, no NEEDED, to have him home so that I could cook him plant based foods, make him his morning lemon juice and make him fresh anti-cancer juices twice a day. This place was no environment for someone who needed to heal.
Frustrated, I asked at the nurses station if I could "check him out myself". They could see how upset I was as I fought back tears and while they said that technically I could check him out, medically it was not a good idea. We walked away and headed for the lift and I burst into tears. I cried all the way to the Cancer Research Centre which we had discovered had the best cafe (T-Bar) in the entire Flinders Complex. We ordered our drinks and we talked or rather Mark talked and I sniffled.
Looking across the room we noticed one of Mark's Neurosurgeons. I joked that I should go over and talk to him! But of course that was not the right thing to do. These people are busy and under a lot of pressure and come here for a break, as I think this cafe is the best kept secret! A little while later, our cups empty, we reluctantly stood up and started to leave the table. I looked over to the Neurosurgeon's table, only to notice a second neurosurgeon who was also familiar with Mark's case. They looked up at us and nod as we pass by, and we nod back, but we keep walking.
At the door to leave the centre a voice in my head said "what are you doing? The doctors are right there, do something!!" I stopped in my tracks, looked at Mark and said "I'm sorry honey, I just have to say something" and I about-faced and bolted back to their table. I apologised for interrupting them and begged them to please pull some strings to allow Mark to go home. They both looked surprised and had a discussion right in front of me and told me that they would make something happen.
The hours ticked away fast and before I knew it, I had to leave to pick Sebastian up from childcare. I was still hopeful that he would be "released" from this prison. Before long I had the text message I had been waiting for and pickup arrangements were made. HE WAS COMING HOME!I told Sebastian the good news and before long we were all home again. Mark's Dad however, was not so fortunate and needed to continue his stay in hospital while more tests were done and medication tweaked. It seemed they were doing every test imaginable and changing drugs and doses regularly until they found a mixture (or potion) that worked. It would be another 4 days before he would eventually be released and allowed to return home to Mt Gambier.
After just one good night's sleep, Mark awoke a fresh new person and while the weekend was a little up and down, daily improvements could be noticed. It's Thursday now and he has been home for 6 days and he seems perfectly normal. Sure he may get a little tired still, but he is back to himself again, sleeping better than ever and feeling strong. He is seizure free, has written a little code and even washed his car today! It is hard to remember that he is still sick as there is only the scar on his head to remind us that we still have a long way to go.
I on the other hand, have not been doing so well. The stress and short nights sleep starting to catch up with me. All week I have been waking around 5am and have been unable to get back to sleep. Today I fell back to sleep once Sebastian and Mark got up, and went into a deep deep sleep. I awoke at 8.30 and I needed to get up as I had committed to a beach walk with a friend and our kids. But I lay there heavy, unable to get up, yet willing and yelling at myself to get up. "You'll feel so much better doing the walk, you always do", said the voice in my head. Reluctantly, I forced myself out of bed. Mark prepared our scrambled eggs and Sebastian and I headed off for the fresh coastal air. The weather was perfect, the beach looked amazing and off we went.
Home again at lunch time, there was no time to rest as I needed to make lunch for everyone and get Seb into bed for his afternoon snooze (thank goodness he still has these). Then a nice long hot shower. There is something about having your first shower in the middle of the day! It's un-rushed, relaxing and the refreshing feeling of the water hitting your skin is pure magic. But even after a morning full of the sun's vitamin D and the magic of a mid-day shower, my spirits had not lifted.
On Monday I had made several phone calls to organise three different doctors appointments and to our accountant. All had told me they would get back to me and not one of them had. I made one phone call after another, loading up our diary's with appointments, but the one office I could not make contact with was the chemo drug trial. I rang four times throughout the afternoon with no answer, yet the nurse that I had been talking with on several occasions, "promised" me that she would call me the minute she had the lab results back. PROMISE...it's a very strong word I think. It's one that I ever use unless I really really mean it. If she had used any other word, perhaps I would not feel so upset and betrayed, because I know those results are in! Mark received a phone call several days ago to advise him of an appointment at the Cancer Research Institute for Friday at 2pm from a person we had never spoken to. He did not advise what the meeting was about or who it would be with or how long it would go for. Immediately we started to speculate, "he is not on the trial, they never tell you bad news over the phone", but why make us wait until Friday? Maybe he is on, but are waiting until Friday to see if he is stable and seizure free (another condition of the trial). I had to know, so I rang and rang until finally while talking with the Radiation Nurse, she let slip that "there is no trial" and that Mark should just talk to his Oncologist Dr Sukamara! This was yet another name we had never heard of! So I rang the Research Centre's main number and asked who this doctor was. He is one of the Oncologists but not part of the Trial's Team. Ah ha....so, it seems we are not on the trial then.
So tomorrow we find out for sure and hopefully a treatment plan will be discussed. Either way, chemo drug or not, we have trust that this is the right thing. We have to trust that with everything we are doing; radiation, yoga, plant based diet, meditation and juicing, that we are killing this thing from every angle and the chemo drug is just not needed. It's out of our control now, time to turn up the "faith-o-meter" and believe.
Wednesday 14 November 2012
Post Number 9 - Just when you think things are going well
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....
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....
Wednesday 7 November 2012
Post Number 8 - Is the Universe trying to Break Me?
It's Wednesday again, a week since my last post, as I sit here sipping chamomile tea rather than the usual glass of Chardonnay! It seems the Universe (or God) is either testing me, trying to break me or maybe it's just trying to show me / teach me more inner strength!
This experience is life changing to all who are involved and not just for the patient. Like we are not dealing with enough with Mark's illness, I then have to deal with another major outage at work (due to the thunder storm), my own illness with gastro and to top it off, my Mum's partner has been offered a room next to hers at her new retirement village residence (most of which I will need to organise)! It seems that the minute I get on top of things, there is something else ready to knock me down again, and it's all the little things that add up to an exhausting day. Simple things like finding a park, trade installations not going to plan, making phone calls and not getting through to the right people, broken toys, dropping, spilling and breaking things, just to name a few, all minor in the grand scheme of things, but when they all happen in a day or two, just make you want to throw your hands up and say, "OK, I give up, just kill me now and put me out of my misery!".
But all these situations could be so much worse and in the end, everything will work itself out, I have to keep believing that. So tonight we blew the dust off the old Yoga DVD and I dragged my man onto his new Yoga mat and we did a session. I feel it helped me a lot to clear my head and help to strengthen my back which I put out a couple of weeks ago when moving a bag of sand from the shed to the playground area for the "so-called hired handyman". Hmmm, it's another story that I don't feel like repeating, but let's just say it's hard to find good help these days!
So I hear you ask, enough about you, how is Mark? Ok, ok, this blog is about me too remember!! He is doing really really well in all aspects. Some days still better than others, but the good days become a higher level of good each time. Like yesterday he actually spent several hours in front of his computer reading and even writing some code. He found the "bits missing" in his brain, which scared him a bit, but he found that he could work through these missing parts and still come up with a programming solution, albeit a bit clumsy and probably took 3 times as long, but it still worked. Next time it will be faster and better and so on and so on.
Physical fitness still has a way to go and seems to be slower than expected. On the weekend, in my brilliance, I suggested we take a walk to Mum's place, the retirement village down the road. Now on this morning, it was overcast, not hot and the walk was downhill. They were having their annual fair and I wanted to show our support and visit Mum at the same time as walk the dog, get some fresh air and get in some exercise. This idea was ticking a number of boxes, time efficient so I thought!
Mark said he was up for it, so with pram, dog and child a ready, we set off. Mark seemed keen and strong and was setting a good pace. Before long we arrived and I suggested he sit down and have a rest while I took a quick look at the brick-a-brack. The clouds started to part and I could see he was getting a little too much sun, so we moved into some shade at some table and chairs so that I could purchase some homemade cakes, lollies for Seb (special occasion) and some pretty average coffee.
It wasn't long before Mark started to fade and he needed desperately to lay down. I quickly grabbed keys from Mum and took him up to her room (with dog as well, shhhhh) so he could lay down. I filled his water bottle and told him I would be back soon with the car.
Back downstairs, I squatted down and looked into Seb's eyes. He knew something was wrong but he was rather quiet. I told him Daddy wasn't feeling well and we need to get home really quickly to fetch the car to bring him home. I told him that I needed him to be strong and not to complain, so that I could get home as fast as possible. Else (the dog) also got a quick pep talk and we headed off at full speed, up the hill. My talks must of worked as Sebastian did not say a word (normally he would ask a hundred questions and whine for something) and Else trotted alongside the pram without once tripping me up or running in front of the pram. Funny how children and animals can sense an emergency and just get it together!
Sweating profusely, I dropped off the dog and grabbed the car keys. Seb hopped in quickly, again without any mucking around and we were back at Mums in record breaking time. He seemed much better and we brought him home. He later told me that he felt like a seizure was coming again and he was quite scared. Thankfully there was no harm done, but he went back into "patient mode" for the rest of that day. Next morning however, I dragged him out again, only this time a much shorter walk to our local oval. Once there, I did the exercise and while he rested in the shade and kicked the ball around a little with Sebastian, then walked home. He told me that it was a good amount of exercise for him and about his limit. This is good, we now have a line in the sand to work with, but we have a very long way to go, considering we used to walk to the oval (Seb as well), then jog 3 to 4 laps, then walk back! Patience my dear, patience....that is what I need - more Yoga and Chamomile tea for me I think!
This experience is life changing to all who are involved and not just for the patient. Like we are not dealing with enough with Mark's illness, I then have to deal with another major outage at work (due to the thunder storm), my own illness with gastro and to top it off, my Mum's partner has been offered a room next to hers at her new retirement village residence (most of which I will need to organise)! It seems that the minute I get on top of things, there is something else ready to knock me down again, and it's all the little things that add up to an exhausting day. Simple things like finding a park, trade installations not going to plan, making phone calls and not getting through to the right people, broken toys, dropping, spilling and breaking things, just to name a few, all minor in the grand scheme of things, but when they all happen in a day or two, just make you want to throw your hands up and say, "OK, I give up, just kill me now and put me out of my misery!".
But all these situations could be so much worse and in the end, everything will work itself out, I have to keep believing that. So tonight we blew the dust off the old Yoga DVD and I dragged my man onto his new Yoga mat and we did a session. I feel it helped me a lot to clear my head and help to strengthen my back which I put out a couple of weeks ago when moving a bag of sand from the shed to the playground area for the "so-called hired handyman". Hmmm, it's another story that I don't feel like repeating, but let's just say it's hard to find good help these days!
So I hear you ask, enough about you, how is Mark? Ok, ok, this blog is about me too remember!! He is doing really really well in all aspects. Some days still better than others, but the good days become a higher level of good each time. Like yesterday he actually spent several hours in front of his computer reading and even writing some code. He found the "bits missing" in his brain, which scared him a bit, but he found that he could work through these missing parts and still come up with a programming solution, albeit a bit clumsy and probably took 3 times as long, but it still worked. Next time it will be faster and better and so on and so on.
Physical fitness still has a way to go and seems to be slower than expected. On the weekend, in my brilliance, I suggested we take a walk to Mum's place, the retirement village down the road. Now on this morning, it was overcast, not hot and the walk was downhill. They were having their annual fair and I wanted to show our support and visit Mum at the same time as walk the dog, get some fresh air and get in some exercise. This idea was ticking a number of boxes, time efficient so I thought!
Mark said he was up for it, so with pram, dog and child a ready, we set off. Mark seemed keen and strong and was setting a good pace. Before long we arrived and I suggested he sit down and have a rest while I took a quick look at the brick-a-brack. The clouds started to part and I could see he was getting a little too much sun, so we moved into some shade at some table and chairs so that I could purchase some homemade cakes, lollies for Seb (special occasion) and some pretty average coffee.
It wasn't long before Mark started to fade and he needed desperately to lay down. I quickly grabbed keys from Mum and took him up to her room (with dog as well, shhhhh) so he could lay down. I filled his water bottle and told him I would be back soon with the car.
Back downstairs, I squatted down and looked into Seb's eyes. He knew something was wrong but he was rather quiet. I told him Daddy wasn't feeling well and we need to get home really quickly to fetch the car to bring him home. I told him that I needed him to be strong and not to complain, so that I could get home as fast as possible. Else (the dog) also got a quick pep talk and we headed off at full speed, up the hill. My talks must of worked as Sebastian did not say a word (normally he would ask a hundred questions and whine for something) and Else trotted alongside the pram without once tripping me up or running in front of the pram. Funny how children and animals can sense an emergency and just get it together!
Sweating profusely, I dropped off the dog and grabbed the car keys. Seb hopped in quickly, again without any mucking around and we were back at Mums in record breaking time. He seemed much better and we brought him home. He later told me that he felt like a seizure was coming again and he was quite scared. Thankfully there was no harm done, but he went back into "patient mode" for the rest of that day. Next morning however, I dragged him out again, only this time a much shorter walk to our local oval. Once there, I did the exercise and while he rested in the shade and kicked the ball around a little with Sebastian, then walked home. He told me that it was a good amount of exercise for him and about his limit. This is good, we now have a line in the sand to work with, but we have a very long way to go, considering we used to walk to the oval (Seb as well), then jog 3 to 4 laps, then walk back! Patience my dear, patience....that is what I need - more Yoga and Chamomile tea for me I think!
Wednesday 31 October 2012
Post Number 7 - Adjusting to a new lifestyle
It's been five days since my last post, with some days being more difficult than others. We are all adjusting to a new daily routine which includes Mark and medical appointments. Mark has been doing so incredibly well with his physical healing, now totally off any pain medication. But sleep seemed to be his nemesis.
As each day passed, his moods and patience level didn't seem to improve by very much. I took this to be his lack of sleep at night. Mark has always been a keen sleeper and always liked to be in bed on time, while I would quite happily stay up and burn the midnight oil. A lack of sleep would most often result in a grumbly bear the next day. So we decided it best if he took a sleeping tablet. I gave him one that I have used in the past, an over the counter pill in which you can take a dose of 1-2 tablets an hour before going to sleep. I gave him a half a tablet, quite a bit lower than the recommended dosage. Well, he slept alright, but was groggy and foggy the next day, which didn't really help at all.
By now he had become really distant and was starting to show signs of depression. I asked him if he felt angry about everything that had happened and he agreed that he probably did. That morning after breakfast we went for a short walk and while Sebastian and Else ran along the creek path, we talked. I was starting to unravel myself and felt it hard to go on each day. Then I got mad and started to point out all the positives in our situation. Financially we are ok, it's stage 3 not 4, it's treatable and beatable and damm it, we have a son who needs us both and it's time to stop wallowing in self-pity. This was a time to embrace all the "spare time" and do the things that he would always complain he didn't have enough time to do. Ride your bike, read your magazines, write some code, play some games and walk the dog in this beautiful sunshine.
By now I could see that he needed some male company as each visitor we had since he returned home was either female, a family or couples. He needed male company, not to talk about the disease or what treatment he was having, but to talk blokey things and just hang out.
I made a call to the chemo doctor to discuss his next appointment and I mentioned his medications and asked for clarification. He advised me that Mark should start to reduce one of the medications used for reducing swelling and fluid as he needed to be clear of this drug before starting the chemo trial. That night Mark went without this drug and finally a better night sleep was experienced, and a new Mark emerged.
It's Wednesday now and today was a real breakthrough. It's the little things that get me excited, like him making a pot of tea for me, putting out the rubbish or offering to give Sebastian a shower and read stories, all without being asked or prompted. This is huge as until today, he had not shown any interest in any daily chores or activities. While this may be quite normal for some husbands, our relationship works on a much different level. Neither of us would usually relax until everything was done, put away and in its place, a daily team effort. Up until today, this had been my total responsibility and it was starting to take its toll.
So now I feel much more hopeful that things will start to improve. I have found some yoga and meditation classes as well as specialised cancer counselling and cancer healing and wellness courses. With the problems at my work now finally fixed and support research completed, I feel I can finally breathe a sigh of relief and have a feeling of being on top of everything, for the first time since Mark was taken away in an Ambulance just two and a half weeks ago! OMG, it seems like a lifetime ago!
As each day passed, his moods and patience level didn't seem to improve by very much. I took this to be his lack of sleep at night. Mark has always been a keen sleeper and always liked to be in bed on time, while I would quite happily stay up and burn the midnight oil. A lack of sleep would most often result in a grumbly bear the next day. So we decided it best if he took a sleeping tablet. I gave him one that I have used in the past, an over the counter pill in which you can take a dose of 1-2 tablets an hour before going to sleep. I gave him a half a tablet, quite a bit lower than the recommended dosage. Well, he slept alright, but was groggy and foggy the next day, which didn't really help at all.
By now he had become really distant and was starting to show signs of depression. I asked him if he felt angry about everything that had happened and he agreed that he probably did. That morning after breakfast we went for a short walk and while Sebastian and Else ran along the creek path, we talked. I was starting to unravel myself and felt it hard to go on each day. Then I got mad and started to point out all the positives in our situation. Financially we are ok, it's stage 3 not 4, it's treatable and beatable and damm it, we have a son who needs us both and it's time to stop wallowing in self-pity. This was a time to embrace all the "spare time" and do the things that he would always complain he didn't have enough time to do. Ride your bike, read your magazines, write some code, play some games and walk the dog in this beautiful sunshine.
By now I could see that he needed some male company as each visitor we had since he returned home was either female, a family or couples. He needed male company, not to talk about the disease or what treatment he was having, but to talk blokey things and just hang out.
I made a call to the chemo doctor to discuss his next appointment and I mentioned his medications and asked for clarification. He advised me that Mark should start to reduce one of the medications used for reducing swelling and fluid as he needed to be clear of this drug before starting the chemo trial. That night Mark went without this drug and finally a better night sleep was experienced, and a new Mark emerged.
It's Wednesday now and today was a real breakthrough. It's the little things that get me excited, like him making a pot of tea for me, putting out the rubbish or offering to give Sebastian a shower and read stories, all without being asked or prompted. This is huge as until today, he had not shown any interest in any daily chores or activities. While this may be quite normal for some husbands, our relationship works on a much different level. Neither of us would usually relax until everything was done, put away and in its place, a daily team effort. Up until today, this had been my total responsibility and it was starting to take its toll.
So now I feel much more hopeful that things will start to improve. I have found some yoga and meditation classes as well as specialised cancer counselling and cancer healing and wellness courses. With the problems at my work now finally fixed and support research completed, I feel I can finally breathe a sigh of relief and have a feeling of being on top of everything, for the first time since Mark was taken away in an Ambulance just two and a half weeks ago! OMG, it seems like a lifetime ago!
Friday 26 October 2012
Post Number 6 - The Home Coming
It's now Friday and Mark has been home since Wednesday afternoon. Sebastian and I were so very excited to bring Daddy home as we had both worked tirelessly the night before to make everything spick and span. Sebastian swept and cleaned, emptied the dishwasher and packed away toys. We ate dinner at 8pm and Seb never complained that dinner was 2 hours late!
Next day, Seb and I attended swimming lessons first as I knew it would take some time before the hospital would have everything ready for Mark to leave. We waited for what seemed to be an eternity until finally everything had been finalised, his staples removed, medication allocated and Radiotherapy booked. It was time to go home after 12 long days in hospital!
The walk to the car was a short one, as was the drive home. We pulled up in the carport and decided to enter the house via the back door as there are only a few steps to manage. Mark seemed unusually quiet and the excitement of coming home seemed to disappear. We went inside and we showed him his new healing haven. He nodded and smiled but said little. I made us all some lunch and then put Sebastian down for his afternoon sleep. Mark still distant, he also decided to have a lie down in his new room.
The house was quiet and I didn't hear from either of the boys all afternoon. I worked frantically on paying bills and sorting out various other affairs until nearly 4.30pm when Sebastian finally awoke from his deep afternoon nap with Mark surfacing half an hour later. He explained that he had the deepest two hour sleep that he had had in weeks and I hoped he would feel a little better and be a little brighter.
The boys went outside and played with remote control cars but it was not long before Mark wanted to rest and take a break. I made dinner and heard Mark tell Sebastian that he needed rest. He seemed a little short tempered with Sebastian which confused him as it is normally me with the short fuse, with Mark being the calming force in our household.
Next day saw Mark feeling much better although still a little snappy. It was Sebastian that seemed to get the brunt of it as he was the one acting out and constantly demanding things and whining which was getting on both of our nerves. Mark asked me later that morning if I noticed anything different about him and I told him that I had noticed his fuse was a little shorter than normal. He was deeply concerned as he also felt this and knew that it was wrong. The fact that he recognised it assured me that this was only short term. That night however, our sensitive and acutely aware little boy sobbed when I put him to bed. He told me that Daddy was making him sad and I comforted him and told him that every day, Daddy was getting a little bit better and we just need to be strong, hang in there and listen to what Daddy needs.
That night, I had trouble sleeping after falling asleep in front of the television. Every time I would start to fall asleep, Sebastian would wake me, either by calling out in his sleep or calling me because he was feeling unwell. It was a very long night and I managed only a few hours sleep. By 7.30am, Mark strutted in, showered, shaved and dressed, ready for breakfast, with me still in bed struggling to get up. He told me he was feeling good after a restful night and while I dragged myself into the shower, he set about getting breakfast organised. I felt relieved that he was starting to do homely things and yet guilty that he felt he needed to.
After breakfast we headed into the city to take Sebastian to Daycare. As we walked up the street, he yelled at the top of his voice, "I don't want to go to the Manor, I want to stay home". Once inside he clung on tight and cried and cried. Usually quite content at daycare, no amount of talking to him would calm him down. He screamed and yelled at us and eventually we had to walk away and wave to him through the window, watching him sob. It was gut wrenching but we had to leave as we had a full day of appointments to attend.
Later that morning we stopped in at the Credit Union where Mark worked and we seemed to have somewhat of a celebrity status. More and more people gathered around Mark to see if he was really ok, to marvel in how quick he was recovering and see the scars of his surgery. I received countless comments about my blog and how so many people felt comfort in reading about how well Mark was handling all that had happened to him. I now have a better understanding of how many people really care about Mark and how many men have been brought to tears reading about his courage and strength. It's true, his courage is to be admired, but we both know that we can only look forwards and there is no time for the "whys" and "hows", only "what do we need to do to beat this?"
An afternoon appointment saw us back at the Flinders for a discussion regarding an experimental chemo drug. We had previously been told that Chemo was not an option for his type of tumour, however, the radiologist immediately saw him as a potential client to go on this drug trial. We discussed the drug and it's side effects and it was an easy decision to sign up for the trial. Tissue samples of the tumour would be retrieved and be sent off to a central lab in Europe to test if Mark's tumour would be accepting of this drug which had seen some positive results in Stage 4 tumours.
So now we wait. Wait for test results to see if he qualifies for the drug and wait for Mark to heal fully before starting radiation therapy. I am so pleased to see how radically different each day is. His moods are better each day, he is feeling stronger each day, the weakness in his left side is going away, his head is tingling as things heal and nerve endings rejoin. Tomorrow we begin some exercise, a walk to the oval (around 4 blocks away) where we usually do our jogging, and while he is under strict instructions (by me) NOT to jog, he can walk or simply enjoy the fresh air and sunshine while I do the hard yards!
Next day, Seb and I attended swimming lessons first as I knew it would take some time before the hospital would have everything ready for Mark to leave. We waited for what seemed to be an eternity until finally everything had been finalised, his staples removed, medication allocated and Radiotherapy booked. It was time to go home after 12 long days in hospital!
The walk to the car was a short one, as was the drive home. We pulled up in the carport and decided to enter the house via the back door as there are only a few steps to manage. Mark seemed unusually quiet and the excitement of coming home seemed to disappear. We went inside and we showed him his new healing haven. He nodded and smiled but said little. I made us all some lunch and then put Sebastian down for his afternoon sleep. Mark still distant, he also decided to have a lie down in his new room.
The house was quiet and I didn't hear from either of the boys all afternoon. I worked frantically on paying bills and sorting out various other affairs until nearly 4.30pm when Sebastian finally awoke from his deep afternoon nap with Mark surfacing half an hour later. He explained that he had the deepest two hour sleep that he had had in weeks and I hoped he would feel a little better and be a little brighter.
The boys went outside and played with remote control cars but it was not long before Mark wanted to rest and take a break. I made dinner and heard Mark tell Sebastian that he needed rest. He seemed a little short tempered with Sebastian which confused him as it is normally me with the short fuse, with Mark being the calming force in our household.
Next day saw Mark feeling much better although still a little snappy. It was Sebastian that seemed to get the brunt of it as he was the one acting out and constantly demanding things and whining which was getting on both of our nerves. Mark asked me later that morning if I noticed anything different about him and I told him that I had noticed his fuse was a little shorter than normal. He was deeply concerned as he also felt this and knew that it was wrong. The fact that he recognised it assured me that this was only short term. That night however, our sensitive and acutely aware little boy sobbed when I put him to bed. He told me that Daddy was making him sad and I comforted him and told him that every day, Daddy was getting a little bit better and we just need to be strong, hang in there and listen to what Daddy needs.
That night, I had trouble sleeping after falling asleep in front of the television. Every time I would start to fall asleep, Sebastian would wake me, either by calling out in his sleep or calling me because he was feeling unwell. It was a very long night and I managed only a few hours sleep. By 7.30am, Mark strutted in, showered, shaved and dressed, ready for breakfast, with me still in bed struggling to get up. He told me he was feeling good after a restful night and while I dragged myself into the shower, he set about getting breakfast organised. I felt relieved that he was starting to do homely things and yet guilty that he felt he needed to.
After breakfast we headed into the city to take Sebastian to Daycare. As we walked up the street, he yelled at the top of his voice, "I don't want to go to the Manor, I want to stay home". Once inside he clung on tight and cried and cried. Usually quite content at daycare, no amount of talking to him would calm him down. He screamed and yelled at us and eventually we had to walk away and wave to him through the window, watching him sob. It was gut wrenching but we had to leave as we had a full day of appointments to attend.
Later that morning we stopped in at the Credit Union where Mark worked and we seemed to have somewhat of a celebrity status. More and more people gathered around Mark to see if he was really ok, to marvel in how quick he was recovering and see the scars of his surgery. I received countless comments about my blog and how so many people felt comfort in reading about how well Mark was handling all that had happened to him. I now have a better understanding of how many people really care about Mark and how many men have been brought to tears reading about his courage and strength. It's true, his courage is to be admired, but we both know that we can only look forwards and there is no time for the "whys" and "hows", only "what do we need to do to beat this?"
An afternoon appointment saw us back at the Flinders for a discussion regarding an experimental chemo drug. We had previously been told that Chemo was not an option for his type of tumour, however, the radiologist immediately saw him as a potential client to go on this drug trial. We discussed the drug and it's side effects and it was an easy decision to sign up for the trial. Tissue samples of the tumour would be retrieved and be sent off to a central lab in Europe to test if Mark's tumour would be accepting of this drug which had seen some positive results in Stage 4 tumours.
So now we wait. Wait for test results to see if he qualifies for the drug and wait for Mark to heal fully before starting radiation therapy. I am so pleased to see how radically different each day is. His moods are better each day, he is feeling stronger each day, the weakness in his left side is going away, his head is tingling as things heal and nerve endings rejoin. Tomorrow we begin some exercise, a walk to the oval (around 4 blocks away) where we usually do our jogging, and while he is under strict instructions (by me) NOT to jog, he can walk or simply enjoy the fresh air and sunshine while I do the hard yards!
Tuesday 23 October 2012
Post Number 5 - The Lab Results
A few more days of miracle healing have passed and with talk of an early release from hospital, spirits are moving upward. The agonising wait for lab results needed much distraction. Sebastian and I visited often and took him out of his room to get fresh air and some exercise. He would walk some of the way and then hop into the wheelchair with Sebastian perched up front and me pushing from behind. The fresh air and frequent visits seem to help, but the unknown results continued to loom over our heads like a black cloud.
I began giving Mark little tasks to do to help train his brain and also occupy him. I know I am no professional, but I hoped it would help with his confidence or find out what he needed to work on to recover what he might of lost from surgery.
Some word games saw him a little slow at first, but then each game following saw him make more and more words. He beat me at Noughts and Crosses and proved he could write words both forwards and backwards. I asked him to explain the steps in how to make a brewed coffee which he easily told me. He was amazing and I could find no fault. As I left, I gave him some homework to build an item from Sebastian's mechano set, following the steps in the booklet, and sure enough, that night, he sent me a photograph of the finished product, perfectly built.
I asked Mark if he would like to see some "mates" as I thought it might help for him to see some other men rather than just Sebastian and I. He agreed and it was organised. I believe he enjoyed the visit and the boys found a way to have a few laughs. But the black cloud was still hanging above.
I also went out that evening to meet a friend who I had not seen in two years as she had moved to Queensland. It was such a luxury to get out of the house alone and meet up in Rundle Street. We talked and talked and I felt we could have talked all night. She is a special friend who thinks in a similar way to me and she seems to understand me well without judgement. She had also been through some tough times recently and it was hard to say goodbye. But the evening helped to recharge me and the next morning I felt strong both physically and mentally.
Sebastian and I arrived at the hospital early again so that we could tell the doctors that we wanted our Daddy home right now!! But we were too late as the doctors had arrived very early to deliver the news we didn't want to hear. It was a stage 3 tumour with stage 4 being the worst and most aggressive. Radiation therapy would be required, with chemo therapy not likely as this type of tumour generally does not respond to chemo. He would need to have the radiation every day (Mon-Fri) for 6 weeks straight. Then 6 weeks of healing, then another MRI scan to see how it all looks.
Wow...everyday for 6 weeks! That's a lot isn't it? I don't know, I have never known anyone going through this. We shed a few tears but we both felt so strong that they were short lived. We had each other, our bodies fit and healthy and minds focused on the task at hand. Mark looked at me with a look of love and a pillar of strength and said, "Ok, Bring it on!" I smiled and squeezed his hand, so proud of this man I married.
Sebastian and I left the hospital to continue with our routine of Kindermusik. While he danced and laughed, I rang family, texted neighbours and posted the news on Facebook. With Sebastian's activity over, I left him with his best mate and returned to the hospital.
After lunch we went for a walk, this time, without a wheelchair. This man was fighting fit and ready to go for a hike! We headed downstairs to the little park area but he wanted to walk more, so down the steps, up the steps, through a staff carpark and up the road we went, up and up the hill. He was walking strong and not breaking a sweat and even I was puffing a little walking up the hill. I heard my phone receive a message and I saw a lovely shady tree just ahead and suggested we sit under the tree for a while and rest! It was lovely just being right away from the hospital and from stupid sick people who were smoking. I mean, what has to happen before they will give it up??
We chatted and planned and enjoyed the sunshine. I told him I would set up in the guest rooms for him so he could have peace and quiet, his own bathroom, and his own living room. This way he could rest when he needed and have visitors or mates over and they can talk blokey things and watch TV or play playstation or even have a jam session with guitars and keyboards. It would be his own man pad and recovery centre.
That afternoon, as Sebastian slept, I went about creating the "man pad", all the while thinking I had a couple of days to finish it. But then I received a text from a very happy Mark to say he was being released tomorrow and the staples could be removed by a GP!! OMG...that was awesome. I scrubbed and tidied up and cleaned and changed sheets and made those rooms look and feel comfortable, inviting and uncluttered. I can't wait to bring him home and cook him the healthy fresh meals that I know he loves. I want to fuss over him and spoil him and love him til he can't take it anymore and I believe he can't wait to be fussed over!!
I began giving Mark little tasks to do to help train his brain and also occupy him. I know I am no professional, but I hoped it would help with his confidence or find out what he needed to work on to recover what he might of lost from surgery.
Some word games saw him a little slow at first, but then each game following saw him make more and more words. He beat me at Noughts and Crosses and proved he could write words both forwards and backwards. I asked him to explain the steps in how to make a brewed coffee which he easily told me. He was amazing and I could find no fault. As I left, I gave him some homework to build an item from Sebastian's mechano set, following the steps in the booklet, and sure enough, that night, he sent me a photograph of the finished product, perfectly built.
I asked Mark if he would like to see some "mates" as I thought it might help for him to see some other men rather than just Sebastian and I. He agreed and it was organised. I believe he enjoyed the visit and the boys found a way to have a few laughs. But the black cloud was still hanging above.
I also went out that evening to meet a friend who I had not seen in two years as she had moved to Queensland. It was such a luxury to get out of the house alone and meet up in Rundle Street. We talked and talked and I felt we could have talked all night. She is a special friend who thinks in a similar way to me and she seems to understand me well without judgement. She had also been through some tough times recently and it was hard to say goodbye. But the evening helped to recharge me and the next morning I felt strong both physically and mentally.
Sebastian and I arrived at the hospital early again so that we could tell the doctors that we wanted our Daddy home right now!! But we were too late as the doctors had arrived very early to deliver the news we didn't want to hear. It was a stage 3 tumour with stage 4 being the worst and most aggressive. Radiation therapy would be required, with chemo therapy not likely as this type of tumour generally does not respond to chemo. He would need to have the radiation every day (Mon-Fri) for 6 weeks straight. Then 6 weeks of healing, then another MRI scan to see how it all looks.
Wow...everyday for 6 weeks! That's a lot isn't it? I don't know, I have never known anyone going through this. We shed a few tears but we both felt so strong that they were short lived. We had each other, our bodies fit and healthy and minds focused on the task at hand. Mark looked at me with a look of love and a pillar of strength and said, "Ok, Bring it on!" I smiled and squeezed his hand, so proud of this man I married.
Sebastian and I left the hospital to continue with our routine of Kindermusik. While he danced and laughed, I rang family, texted neighbours and posted the news on Facebook. With Sebastian's activity over, I left him with his best mate and returned to the hospital.
After lunch we went for a walk, this time, without a wheelchair. This man was fighting fit and ready to go for a hike! We headed downstairs to the little park area but he wanted to walk more, so down the steps, up the steps, through a staff carpark and up the road we went, up and up the hill. He was walking strong and not breaking a sweat and even I was puffing a little walking up the hill. I heard my phone receive a message and I saw a lovely shady tree just ahead and suggested we sit under the tree for a while and rest! It was lovely just being right away from the hospital and from stupid sick people who were smoking. I mean, what has to happen before they will give it up??We chatted and planned and enjoyed the sunshine. I told him I would set up in the guest rooms for him so he could have peace and quiet, his own bathroom, and his own living room. This way he could rest when he needed and have visitors or mates over and they can talk blokey things and watch TV or play playstation or even have a jam session with guitars and keyboards. It would be his own man pad and recovery centre.
That afternoon, as Sebastian slept, I went about creating the "man pad", all the while thinking I had a couple of days to finish it. But then I received a text from a very happy Mark to say he was being released tomorrow and the staples could be removed by a GP!! OMG...that was awesome. I scrubbed and tidied up and cleaned and changed sheets and made those rooms look and feel comfortable, inviting and uncluttered. I can't wait to bring him home and cook him the healthy fresh meals that I know he loves. I want to fuss over him and spoil him and love him til he can't take it anymore and I believe he can't wait to be fussed over!!
Saturday 20 October 2012
Post Number 4 - The Healing
Today is Saturday, two days after the surgery. Mark's swollen and bruised face has all but gone down completely, which is amazing in itself!
Yesterday I decided to wait another day before taking Sebastian in to see his father. I didn't want him to get scared and I thought a little more time would make all the difference. By now however, Sebastian was starting to act out and was calling for his daddy a lot more. A first planned sleepover changed to me bringing him home and putting him to bed. It's so hard. I don't want him to be upset or add more stress to his already confusing little life.
By the time I got to the hospital it was quite late in the evening and Mark seemed a little down. We talked about pain levels and the type of pain medication he was on as I could not understand why he was only on Panadol a day after surgery! He had not had any real sleep or rest so I decided I would talk to the nurses and find out what we could do. A short conversation later and his medication was changed to a higher dose of pain meds which he was allowed to have every two hours. Satisfied that he would now get a chance to rest, I kissed him goodnight and promised to be back in the morning to help him have a shower.
With an early morning play date arranged, Sebastian and I made pancakes, leaving one aside to take to Daddy. With a promise I would take him to see Daddy later that morning, I left him with a neighbour and headed in to hospital.
When I arrived, the nurse was changing the dressing on the wound which travels from one ear to the other. His head was covered in staples and I joked that he looked like the character out of Robo Cop. Or at least I said, "some movie with a robot", and he said, "Oh, you mean Robo Cop". The swelling had gone down quite a bit and he was looking much better as he did get some rest overnight. The showering went well using the shower chair with me only scrubbing his back and holding the water for him. I helped him into some clothes and gave him his shaver and he was beginning to look normal again.
I then went home to pick up Sebastian. We cut some beautiful roses from the garden and grabbed some cream for Mark's lips, the pancake that we had prepared earlier and we were off. On the way I told Sebastian that Daddy may look a little funny, but he is still the same Daddy we know and love. He handled it really well and although he was a little stand offish, he happily gave his Dad a hug.
With his family members together, I grabbed a wheelchair and we set off to feed some ducks and get Mark some much needed fresh air. We only stayed in the courtyard a short time, and Mark seemed to enjoy feeding the ducks himself as well as watching Sebastian. He said he was ready for a real coffee, so we wheeled him over to the cafe' for the real thing.
The whole adventure seemed to tire Mark and he was soon ready to head back inside, his lunch awaiting him. We stayed a little longer but once he had eaten his lunch we left him to rest for the afternoon. The family then returned home where we all had lunch together and I had a much needed opportunity to do some grocery shopping.
After a simple dinner of BBQ sausages and store bought salad, the family headed off first to see Mark with me following once Sebastian had settled in to bed (which seemed to take forever). By the time I arrived, Mark was already getting ready for bed. I stayed with him a short while but he seemed really tired and when I asked him if I should leave, he said yes.
On the way out I noticed some maps of the brain and descriptions of what the various parts of the brain do. Right Frontal Lobe; Mood, Social Interactivity, Decision Making, Evaluation of Environment and something else about the sequence of a task, like making a cup of coffee. So far I cannot tell if there are any differences or changes as he seems a unhappy, distracted and bored. He asked for some electronic devices to be brought back and I guess I should be pleased. But I am so unsure and I hate that he is there bored and I want him here where I could look after him and spend more time with him as well as give him rest periods with quietness.
He is in a shared room now and this would only add to his depression. I only hope that this is a short term thing and that with some good news from doctors, a connection to the Internet and a healed body, he will bounce back and give me a genuine smile.
Yesterday I decided to wait another day before taking Sebastian in to see his father. I didn't want him to get scared and I thought a little more time would make all the difference. By now however, Sebastian was starting to act out and was calling for his daddy a lot more. A first planned sleepover changed to me bringing him home and putting him to bed. It's so hard. I don't want him to be upset or add more stress to his already confusing little life.
By the time I got to the hospital it was quite late in the evening and Mark seemed a little down. We talked about pain levels and the type of pain medication he was on as I could not understand why he was only on Panadol a day after surgery! He had not had any real sleep or rest so I decided I would talk to the nurses and find out what we could do. A short conversation later and his medication was changed to a higher dose of pain meds which he was allowed to have every two hours. Satisfied that he would now get a chance to rest, I kissed him goodnight and promised to be back in the morning to help him have a shower.
With an early morning play date arranged, Sebastian and I made pancakes, leaving one aside to take to Daddy. With a promise I would take him to see Daddy later that morning, I left him with a neighbour and headed in to hospital.
When I arrived, the nurse was changing the dressing on the wound which travels from one ear to the other. His head was covered in staples and I joked that he looked like the character out of Robo Cop. Or at least I said, "some movie with a robot", and he said, "Oh, you mean Robo Cop". The swelling had gone down quite a bit and he was looking much better as he did get some rest overnight. The showering went well using the shower chair with me only scrubbing his back and holding the water for him. I helped him into some clothes and gave him his shaver and he was beginning to look normal again.
I then went home to pick up Sebastian. We cut some beautiful roses from the garden and grabbed some cream for Mark's lips, the pancake that we had prepared earlier and we were off. On the way I told Sebastian that Daddy may look a little funny, but he is still the same Daddy we know and love. He handled it really well and although he was a little stand offish, he happily gave his Dad a hug.
With his family members together, I grabbed a wheelchair and we set off to feed some ducks and get Mark some much needed fresh air. We only stayed in the courtyard a short time, and Mark seemed to enjoy feeding the ducks himself as well as watching Sebastian. He said he was ready for a real coffee, so we wheeled him over to the cafe' for the real thing.
The whole adventure seemed to tire Mark and he was soon ready to head back inside, his lunch awaiting him. We stayed a little longer but once he had eaten his lunch we left him to rest for the afternoon. The family then returned home where we all had lunch together and I had a much needed opportunity to do some grocery shopping.
After a simple dinner of BBQ sausages and store bought salad, the family headed off first to see Mark with me following once Sebastian had settled in to bed (which seemed to take forever). By the time I arrived, Mark was already getting ready for bed. I stayed with him a short while but he seemed really tired and when I asked him if I should leave, he said yes.
On the way out I noticed some maps of the brain and descriptions of what the various parts of the brain do. Right Frontal Lobe; Mood, Social Interactivity, Decision Making, Evaluation of Environment and something else about the sequence of a task, like making a cup of coffee. So far I cannot tell if there are any differences or changes as he seems a unhappy, distracted and bored. He asked for some electronic devices to be brought back and I guess I should be pleased. But I am so unsure and I hate that he is there bored and I want him here where I could look after him and spend more time with him as well as give him rest periods with quietness.
He is in a shared room now and this would only add to his depression. I only hope that this is a short term thing and that with some good news from doctors, a connection to the Internet and a healed body, he will bounce back and give me a genuine smile.
Thursday 18 October 2012
Post Number 3 - The Miracle
The day after surgery and we all breathe a sigh of relief. It has been the toughest 24 hours of our lives, but with the overwhelming support from friends and family, we are getting through it.
Yesterday (surgery day) the whole family spent the morning with Mark. Sebastian and I arrived early and Mark seemed in very good spirits. I had spent some quality time with him the evening before and we had some very good conversation. We had both heard some positive stories that day and we were filled with yet more "signs" of hope and that there can be life after brain surgery.
By the time I left the hospital, my nerves and butterflies were gone and we both felt a sense of calm. It was going to be ok, we just knew it and there was no more doubt.
The morning was spent waiting for news. When would he be called in for surgery? When would they prep him for surgery? By 12.30pm, Seb and I just had to leave, although we did not want to. But I had to ensure Sebastian had something to eat and some time to rest and I knew that his family would stay until the time came. As it turned out, the theatre staff came at 1pm and asked why he was not ready for surgery!! Suddenly there was a mad rush to change clothes and put on stockings and race down to theatre! There was no time for tears and lengthy goodbyes, just "see ya later on", and with that he was wheeled away!
Sebastian has been nothing but a pillar of strength, never complaining, never asking why Daddy isn't coming home, never breaking down. He has kept me strong and kept me going. He has been sleeping well day and night, the mental stress obviously tiring him. I have had many people offer to look after him, have him sleep over, but to not have him with me just would not feel right. We need each other more than ever.
The afternoon was spent with family and with sorting out German Costumes! I needed to keep busy and keep my mind focused on something else. Removing the clutter from my family room also gives me a sense of relief as I see my house that has been a total mess for months, slowly start to resemble the home it used to be.
By 5.30pm the family were growing restless. Why haven't we heard anything? Perhaps you should ring! I had been avoiding this but at 5.45pm I made the call and found out he was just about to be moved into recovery. By 6.30pm I had the call from the doctor saying that everything went well and as expected, no nasty surprises. Mark was awake, he knew where he was, what the day was and even the date. He also asked the doctor to call me and told the doctor my mobile phone number!
The news was nothing short of a "Miracle". He really was ok. Tears of joy flowed freely as did a welcome alcoholic beverage. My tears however did not come and still have not. The emotion is there, I feel it's strength. I was sure writing this would open the floodgates but about halfway through writing this I received an IT Support call! A serious IT Support call. It's the kind of helpdesk call you never want to get. "The swim centre's main system is down" and no amount of switching it off and on again will bring it back. Perhaps it's a sign. In order for Mark to live, something else had to die and this PC was the sacrifice to the IT Gods!!
Crazy isn't it? Maybe I am going a little mad! I knew that I would not be able to handle such a situation without the support of my amazing husband, as he is always my calming force and my technical help when things get tough. So I rang Andrew, my Ex and my Ex Business Partner. I told him the situation and he was more than happy to assist and send out an engineer immediately to help me out.
As I look at the time I realise that I just don't have the time or the strength to do the work I wanted to do this morning. The house is so quiet. Sebastian is in Childcare, the dog is playing next door and all I can hear is the clocks tick tick ticking.
I spent last night at Mark's bedside, washing away the signs of the surgery, feeding him ice chips and massaging his legs as they forgot to hookup the machine that was supposed to do this! When I first saw him I was a little taken aback by his big fat lip. He looked like he had just come off the football field! But when he smiled and thanked me so much for being there with him, all I saw was the man I love. He told me he felt "unbelievably good!" He could remember everything. I said, yes, but what about code and the projects you were working on last week. He said, "YES, EVERYTHING!!"
He couldn't believe it and he hoped the surgeon who did the operation would come and see him in the morning so he could shake his hand. Personally I want to hug him and kiss him, but that may be inappropriate!
His observations were being done every half and hour and he was passing them all with flying colours. Motor strength good on both sides, blood pressure slightly high, but that is not a bad thing, he was hungry and asking for food, but had to wait until 11pm. He was so happy, so very tired, but so happy. I can't believe it, I have my husband back.
Thank you, thank you, thank you for all your prayers and thoughts. Clearly if enough people all pray together, miracles do happen. And yes, you can hug me now and tears of happiness will flow. I wish I could thank each and everyone of you reading this. Even if I don't know you, I know that you have played a part in bringing him back to me. I know you will understand if I don't reply to every email, text or letter. This is my way of communicating my gratitude and the way that I can best utilise my time to communicate so that I can get back to the important job of getting my man back on his feet and reuniting him with his amazing son.
We now have to wait for the lab results to come back to see if we are dealing with cancer or not. Whatever the results, we will continue soldiering on, one day at a time.
Yesterday (surgery day) the whole family spent the morning with Mark. Sebastian and I arrived early and Mark seemed in very good spirits. I had spent some quality time with him the evening before and we had some very good conversation. We had both heard some positive stories that day and we were filled with yet more "signs" of hope and that there can be life after brain surgery.
By the time I left the hospital, my nerves and butterflies were gone and we both felt a sense of calm. It was going to be ok, we just knew it and there was no more doubt.
The morning was spent waiting for news. When would he be called in for surgery? When would they prep him for surgery? By 12.30pm, Seb and I just had to leave, although we did not want to. But I had to ensure Sebastian had something to eat and some time to rest and I knew that his family would stay until the time came. As it turned out, the theatre staff came at 1pm and asked why he was not ready for surgery!! Suddenly there was a mad rush to change clothes and put on stockings and race down to theatre! There was no time for tears and lengthy goodbyes, just "see ya later on", and with that he was wheeled away!
Sebastian has been nothing but a pillar of strength, never complaining, never asking why Daddy isn't coming home, never breaking down. He has kept me strong and kept me going. He has been sleeping well day and night, the mental stress obviously tiring him. I have had many people offer to look after him, have him sleep over, but to not have him with me just would not feel right. We need each other more than ever.
The afternoon was spent with family and with sorting out German Costumes! I needed to keep busy and keep my mind focused on something else. Removing the clutter from my family room also gives me a sense of relief as I see my house that has been a total mess for months, slowly start to resemble the home it used to be.
By 5.30pm the family were growing restless. Why haven't we heard anything? Perhaps you should ring! I had been avoiding this but at 5.45pm I made the call and found out he was just about to be moved into recovery. By 6.30pm I had the call from the doctor saying that everything went well and as expected, no nasty surprises. Mark was awake, he knew where he was, what the day was and even the date. He also asked the doctor to call me and told the doctor my mobile phone number!
The news was nothing short of a "Miracle". He really was ok. Tears of joy flowed freely as did a welcome alcoholic beverage. My tears however did not come and still have not. The emotion is there, I feel it's strength. I was sure writing this would open the floodgates but about halfway through writing this I received an IT Support call! A serious IT Support call. It's the kind of helpdesk call you never want to get. "The swim centre's main system is down" and no amount of switching it off and on again will bring it back. Perhaps it's a sign. In order for Mark to live, something else had to die and this PC was the sacrifice to the IT Gods!!
Crazy isn't it? Maybe I am going a little mad! I knew that I would not be able to handle such a situation without the support of my amazing husband, as he is always my calming force and my technical help when things get tough. So I rang Andrew, my Ex and my Ex Business Partner. I told him the situation and he was more than happy to assist and send out an engineer immediately to help me out.
As I look at the time I realise that I just don't have the time or the strength to do the work I wanted to do this morning. The house is so quiet. Sebastian is in Childcare, the dog is playing next door and all I can hear is the clocks tick tick ticking.
I spent last night at Mark's bedside, washing away the signs of the surgery, feeding him ice chips and massaging his legs as they forgot to hookup the machine that was supposed to do this! When I first saw him I was a little taken aback by his big fat lip. He looked like he had just come off the football field! But when he smiled and thanked me so much for being there with him, all I saw was the man I love. He told me he felt "unbelievably good!" He could remember everything. I said, yes, but what about code and the projects you were working on last week. He said, "YES, EVERYTHING!!"
He couldn't believe it and he hoped the surgeon who did the operation would come and see him in the morning so he could shake his hand. Personally I want to hug him and kiss him, but that may be inappropriate!
His observations were being done every half and hour and he was passing them all with flying colours. Motor strength good on both sides, blood pressure slightly high, but that is not a bad thing, he was hungry and asking for food, but had to wait until 11pm. He was so happy, so very tired, but so happy. I can't believe it, I have my husband back.
Thank you, thank you, thank you for all your prayers and thoughts. Clearly if enough people all pray together, miracles do happen. And yes, you can hug me now and tears of happiness will flow. I wish I could thank each and everyone of you reading this. Even if I don't know you, I know that you have played a part in bringing him back to me. I know you will understand if I don't reply to every email, text or letter. This is my way of communicating my gratitude and the way that I can best utilise my time to communicate so that I can get back to the important job of getting my man back on his feet and reuniting him with his amazing son.
We now have to wait for the lab results to come back to see if we are dealing with cancer or not. Whatever the results, we will continue soldiering on, one day at a time.
Tuesday 16 October 2012
Post Number 2 - Processing the Information
It's Wednesday and Mark has now been in hospital 5 days. Not much sleep last night. Stomach tied up in knots. You know that nervous energy you feel just before an important interview or big exam? It usually only lasts a short time, but I have felt this since last night. That feel of panic, utter terrifying panic, but suppressing it due to necessity.
It's funny, you hear of other people going through these types of things and you think to yourself, "I would never be able to cope with that situation" and yet, here I am, doing just that. Taking it one day at a time, organising help, wills, power of eternity etc etc. This is craziness. Utter utter madness. This must be a hideous dream.
Mark and I have always tried to live life with integrity and honesty. Do unto others and you would have them do to you, or however it goes. There have been times when we have done good things for people and they have gone seemingly unnoticed, but then we think, it doesn't matter, because Karma (or God or the Universe) will be sure to look after us. So, Greater Power...it's your turn. Judgement day so to speak. Do we pass? We sure hope so.
Detailed discussions with surgeons today, drove home even harder the seriousness of what we are dealing with here. The words "aggressive", "may never be the same", "high dependency" and "we just don't know" are the kind of words you don't want to hear from the people who are about to open up your husband's great brain. It felt like we were hearing the news all over again for the first time.
But we are helpless. There is nothing more we can do. We have asked all the questions, signed all the consent forms and at this stage, we are looking at surgery tomorrow afternoon. There was talk of waiting a while, letting him come home to have "family time" but just this morning, a simple walk downstairs to get coffee, resulted in him feeling like he was going to have another seizure and him wanting desperately to get back to the safety of his room with medical staff close by. We can't wait any longer.....it's time.
It's funny, you hear of other people going through these types of things and you think to yourself, "I would never be able to cope with that situation" and yet, here I am, doing just that. Taking it one day at a time, organising help, wills, power of eternity etc etc. This is craziness. Utter utter madness. This must be a hideous dream.
Mark and I have always tried to live life with integrity and honesty. Do unto others and you would have them do to you, or however it goes. There have been times when we have done good things for people and they have gone seemingly unnoticed, but then we think, it doesn't matter, because Karma (or God or the Universe) will be sure to look after us. So, Greater Power...it's your turn. Judgement day so to speak. Do we pass? We sure hope so.
Detailed discussions with surgeons today, drove home even harder the seriousness of what we are dealing with here. The words "aggressive", "may never be the same", "high dependency" and "we just don't know" are the kind of words you don't want to hear from the people who are about to open up your husband's great brain. It felt like we were hearing the news all over again for the first time.
But we are helpless. There is nothing more we can do. We have asked all the questions, signed all the consent forms and at this stage, we are looking at surgery tomorrow afternoon. There was talk of waiting a while, letting him come home to have "family time" but just this morning, a simple walk downstairs to get coffee, resulted in him feeling like he was going to have another seizure and him wanting desperately to get back to the safety of his room with medical staff close by. We can't wait any longer.....it's time.
Post Number 1 - The Full Story
I'm starting a new blog.
Will I keep writing regularly? I don't know!
Why am I writing it? Because I have an overwhelming amount of people who love not only me, but my amazing husband. I have so many people asking me "how is he?", "How are you?" "What are the doctors saying?" "Have you had a second opinion?" "How did this happen?" and it goes on an on.
Yes, there are so many people who love my husband, and what's not to love? He is my best friend and has been for many many years. We worked together, fixed server crashes together, bitched about "stupid users" when we worked on helpdesk together, we laughed together, cried together, supported each other through our personal lives, why wouldn't we finally admit to each other (and the world) that we HAD to share our lives together as husband and wife, to hell with the age difference.
Our love then produced the most amazing son who is a carbon copy of both of us. His manorisims, his love for cars, his particularly sensitive nature and the care he takes in all his possessions, yes, he is definitely our son, through and through.
So....what happened I hear you ask. Well, two weekends ago, we were going about our business as normal. Checking out the garden, netting the apricot tree as we excitedly inspected the abundance of fruit that we shall receive this season. Next job was to dig some small holes to cement in Sebastian's Swing set. With the holes dug, Mark gathered the "ingredients" for our cement mix. He was feeling quite thirsty so I told him I would grab a bottle of water for him and wake Sebastian from his afternoon sleep. With Seb awake and another load of washing to hang out, I asked Seb to take the water to his Dad, which he gladly did. Ten minutes later I noticed the empty bottle and when I went to check on Mark he told me he was feeling a little dizzy and a little sick and he was sitting on the garden edging with Seb perched on his lap.
I thought nothing of it and was happily talking away when I looked over and saw him shaking. Quickly I pulled Seb off his lap and Mark moved to the lawn. Within seconds he was having a seizure. I had never seen anything like it and it was horrifying to watch. Luckily, my mobile phone was on the outside bench (which it NEVER IS) and I rang 000 for the first time in my life.
Sebastian looked on in horror and Else occasionally tried to lick him to bring him back, but after a few minutes it stopped and with the assistance of the emergency staff, I was able to keep it together and keep Mark from going into a coma. I rolled him on his side and kept talking to him. He was confused and didn't seem to know who I was. He tried to talk but no words came. I could feel the panic rising inside, but I kept on talking to him and reassuring him and then a word came out that I could understand and I felt a sigh of relieve.
The Ambulance came and they took him away Flinders Hospital. Still in shock I went to a neighbour and had a cup of tea while Sebastian happily played with their three children. A few hours later and I was told that I could come and pick Mark up from the hospital as all tests showed "normal". Still shocked and confused, I gladly brought him home and he tucked Sebastian up in bed. We then spent the evening talking and researching "how on earth did this happen?". No family history or any history of ever having such a thing occur, there had to be a valid reason. Mark being Mark, searched for answers and came to the conclusion that the super fast downing of the bottle of water caused the seizure and we thought, "lesson learned, that was a close call".
The next day Mark was a little tired but in general, he was ok. We went on our business and Mark and Sebastian accompanied me in the afternoon to Else's Dog Trial where he could sit and get fresh air and get some much needed sunshine. The days that followed also seemed pretty normal, with Mark going to work and talk of a management position was considered. Yes, it was life as normal again. Sure, an MRI had been scheduled for 4 weeks time, but we considered this to be just a routine process.
The working week came to an end and it was the weekend again. Nothing too strenuous planned and Mark decided he didn't want to do anything too physical, but a trip to the Hardware shop would be in order. Only 3 minutes up the road from home and he felt the same feelings as the week before. As he was driving, and was in the middle of the road, there was no chance of pulling over. I saw a turning lane in to the Panorama Tafe. I instructed him to pull into this and take the car out of gear which he did and I quickly pulled up the handbrake and put on the hazard lights. I watched him and talked to him, keeping him calm and keeping his breathing as normal as possible. I saw a large break in traffic and knew that I could not get him out of the car safely in the middle of the road. I asked him to put the car in gear and drive straight across the road into the Tafe driveway, which he did. I got him out of the car, sat him on the bark, pulled Sebastian out of the car and rang 000.
This time he did not go into a seizure, but he still felt unwell. This time the ambulance took for ever and I decided to call Emergency back when I saw what I thought was our "help" and I flagged it down, only later finding out that they were just heading back to base, but saw that we needed help and decided to turn around and help us out.
They took him away and this time the emergency department did more tests including a CT Scan. That was when they found something that had the doctors talking. What was this strange little spot on the scan? We were told it looked like a worm or parasite of some sort. Something was causing swelling and excess fluid in the brain. But the doctors were sure it didn't look like a tumor.
That night he was admitted into hospital, with an MRI to be done the next day. But we both felt ok as we had no real diagnosis and if it was a parasite, it would be easily treated and certainly no surgery would be required. I brought Mark many electronic gadgets and car magazines while he put his feet up and enjoyed the quiet time to catchup on reading and podcasts. The only thing missing was a banana lounge and a pina colada!
He had the MRI in the afternoon the next day. But no doctors came to give him a diagnosis. Then they moved him from a normal ward to the Neurosurgery ward, but still no doctors came. I went back to see him that night and he was worried and now I was too. Why had we not received any news? This can't be good.
I decided to go back early next morning as this had been the trend so far that doctors would see their patients first thing in the morning. I was there at 8.30am while Sebastian stayed home to give Oma and Herbert driving lessons with his remote control cars. I stayed til nearly 10am but still no doctors came.
I raced home and took Sebastian to Kindermusik, in order to keep his routine in tact as much as possible, but on the way I received a phone call asking when I could get back to the hospital. I knew this was bad news. We continued on to our music class and after I took him to his "mates" place, where he spent the rest of the day, while I went back to the hospital.
We received confirmation that there was indeed a tumor, but something quite unusual. A team of neurologists had had a meeting that morning, reviewing all the scans and tests over and over and they all agreed that an operation was the only option. What we are dealing with we still do not know, but unfortunately, although the spot is quite small, the grey shadow around the spot is significant. It sits deep in the right frontal lobe of the brain and the only way to remove it, is to remove that part of the brain with the suspect thing in it!
The right frontal lobe controls things such as decision making, personality and moods, some would say a less significant part of the brain, all things considered. But it will make a difference, it has too. Not saying that he cannot make a full recovery, but that may take a very long time. There are many unanswered questions. I bet you are coming up with a dozen questions now, just as we have done while trying to comprehend how we got here. But there are no answers to the questions. Not until it is out and the lab results come back. Only then will we know what the next stage will be.
Am I ok, I hear you ask. Of course not. But I am doing what I need to do to keep going...for we have a son, who needs me to keep it together, and I have a husband, who needs me to be strong and keep things going and I'm not about to let either of them down.
I know you are out there. I feel your love, your support and I hear your tears and I know you hear mine. I don't need you to send me a text or an email, I can feel you. I know that I can ask for your help with anything, and believe me, I will ask you for help. But know that I need to do this my way. I know you want to hug me and tell me you are sorry, but I cannot do this right now. I know you want to ring me or keep me company, but I cannot do this right now.
I am not frightened to ask for help. I have already enlisted help from several people already and you will get your turn. I am keeping food on the table, but my precooked leftovers are running low. I remember when I first came home from hospital after having Sebastian. My amazing neighbours brought casseroles and warm dinners, so I would not have to cook. I will always remember how loved I felt during that time, that people would go out of their way to bring us food so we wouldn't need to eat takeaway meals or worry about cooking.
I know this post is long and I know some of you already know the story. But this helps me to talk to you and tell you everything I know and it means I don't have to repeat myself over and over which I am finding very tiring. Everyday that Mark is not home Sebastian grows a little sadder. He has been so very good but I know he is hurting. He plays and laughs with his friends, but once everyone goes home, I can see the pain in his eyes and this is the hardest part for me and Mark to deal with.
Tonight I told him that we will go and see Daddy tomorrow after swimming. I told him that sometimes we cry when we are sad, but sometimes when we are so very happy, we also cry and that Daddy might cry tomorrow, not because he is sad, but because he will be so happy to see him.
I love you all and thank you for reading my story. I promise you I will keep you up to date, I promise I will ask you for help when I need it and I promise to look after myself and keep the wheels turning.
Til next blog......Goodnight all
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Will I keep writing regularly? I don't know!
Why am I writing it? Because I have an overwhelming amount of people who love not only me, but my amazing husband. I have so many people asking me "how is he?", "How are you?" "What are the doctors saying?" "Have you had a second opinion?" "How did this happen?" and it goes on an on.
Yes, there are so many people who love my husband, and what's not to love? He is my best friend and has been for many many years. We worked together, fixed server crashes together, bitched about "stupid users" when we worked on helpdesk together, we laughed together, cried together, supported each other through our personal lives, why wouldn't we finally admit to each other (and the world) that we HAD to share our lives together as husband and wife, to hell with the age difference.
Our love then produced the most amazing son who is a carbon copy of both of us. His manorisims, his love for cars, his particularly sensitive nature and the care he takes in all his possessions, yes, he is definitely our son, through and through.
So....what happened I hear you ask. Well, two weekends ago, we were going about our business as normal. Checking out the garden, netting the apricot tree as we excitedly inspected the abundance of fruit that we shall receive this season. Next job was to dig some small holes to cement in Sebastian's Swing set. With the holes dug, Mark gathered the "ingredients" for our cement mix. He was feeling quite thirsty so I told him I would grab a bottle of water for him and wake Sebastian from his afternoon sleep. With Seb awake and another load of washing to hang out, I asked Seb to take the water to his Dad, which he gladly did. Ten minutes later I noticed the empty bottle and when I went to check on Mark he told me he was feeling a little dizzy and a little sick and he was sitting on the garden edging with Seb perched on his lap.
I thought nothing of it and was happily talking away when I looked over and saw him shaking. Quickly I pulled Seb off his lap and Mark moved to the lawn. Within seconds he was having a seizure. I had never seen anything like it and it was horrifying to watch. Luckily, my mobile phone was on the outside bench (which it NEVER IS) and I rang 000 for the first time in my life.
Sebastian looked on in horror and Else occasionally tried to lick him to bring him back, but after a few minutes it stopped and with the assistance of the emergency staff, I was able to keep it together and keep Mark from going into a coma. I rolled him on his side and kept talking to him. He was confused and didn't seem to know who I was. He tried to talk but no words came. I could feel the panic rising inside, but I kept on talking to him and reassuring him and then a word came out that I could understand and I felt a sigh of relieve.
The Ambulance came and they took him away Flinders Hospital. Still in shock I went to a neighbour and had a cup of tea while Sebastian happily played with their three children. A few hours later and I was told that I could come and pick Mark up from the hospital as all tests showed "normal". Still shocked and confused, I gladly brought him home and he tucked Sebastian up in bed. We then spent the evening talking and researching "how on earth did this happen?". No family history or any history of ever having such a thing occur, there had to be a valid reason. Mark being Mark, searched for answers and came to the conclusion that the super fast downing of the bottle of water caused the seizure and we thought, "lesson learned, that was a close call".
The next day Mark was a little tired but in general, he was ok. We went on our business and Mark and Sebastian accompanied me in the afternoon to Else's Dog Trial where he could sit and get fresh air and get some much needed sunshine. The days that followed also seemed pretty normal, with Mark going to work and talk of a management position was considered. Yes, it was life as normal again. Sure, an MRI had been scheduled for 4 weeks time, but we considered this to be just a routine process.
The working week came to an end and it was the weekend again. Nothing too strenuous planned and Mark decided he didn't want to do anything too physical, but a trip to the Hardware shop would be in order. Only 3 minutes up the road from home and he felt the same feelings as the week before. As he was driving, and was in the middle of the road, there was no chance of pulling over. I saw a turning lane in to the Panorama Tafe. I instructed him to pull into this and take the car out of gear which he did and I quickly pulled up the handbrake and put on the hazard lights. I watched him and talked to him, keeping him calm and keeping his breathing as normal as possible. I saw a large break in traffic and knew that I could not get him out of the car safely in the middle of the road. I asked him to put the car in gear and drive straight across the road into the Tafe driveway, which he did. I got him out of the car, sat him on the bark, pulled Sebastian out of the car and rang 000.
This time he did not go into a seizure, but he still felt unwell. This time the ambulance took for ever and I decided to call Emergency back when I saw what I thought was our "help" and I flagged it down, only later finding out that they were just heading back to base, but saw that we needed help and decided to turn around and help us out.
They took him away and this time the emergency department did more tests including a CT Scan. That was when they found something that had the doctors talking. What was this strange little spot on the scan? We were told it looked like a worm or parasite of some sort. Something was causing swelling and excess fluid in the brain. But the doctors were sure it didn't look like a tumor.
That night he was admitted into hospital, with an MRI to be done the next day. But we both felt ok as we had no real diagnosis and if it was a parasite, it would be easily treated and certainly no surgery would be required. I brought Mark many electronic gadgets and car magazines while he put his feet up and enjoyed the quiet time to catchup on reading and podcasts. The only thing missing was a banana lounge and a pina colada!
He had the MRI in the afternoon the next day. But no doctors came to give him a diagnosis. Then they moved him from a normal ward to the Neurosurgery ward, but still no doctors came. I went back to see him that night and he was worried and now I was too. Why had we not received any news? This can't be good.
I decided to go back early next morning as this had been the trend so far that doctors would see their patients first thing in the morning. I was there at 8.30am while Sebastian stayed home to give Oma and Herbert driving lessons with his remote control cars. I stayed til nearly 10am but still no doctors came.
I raced home and took Sebastian to Kindermusik, in order to keep his routine in tact as much as possible, but on the way I received a phone call asking when I could get back to the hospital. I knew this was bad news. We continued on to our music class and after I took him to his "mates" place, where he spent the rest of the day, while I went back to the hospital.
We received confirmation that there was indeed a tumor, but something quite unusual. A team of neurologists had had a meeting that morning, reviewing all the scans and tests over and over and they all agreed that an operation was the only option. What we are dealing with we still do not know, but unfortunately, although the spot is quite small, the grey shadow around the spot is significant. It sits deep in the right frontal lobe of the brain and the only way to remove it, is to remove that part of the brain with the suspect thing in it!
The right frontal lobe controls things such as decision making, personality and moods, some would say a less significant part of the brain, all things considered. But it will make a difference, it has too. Not saying that he cannot make a full recovery, but that may take a very long time. There are many unanswered questions. I bet you are coming up with a dozen questions now, just as we have done while trying to comprehend how we got here. But there are no answers to the questions. Not until it is out and the lab results come back. Only then will we know what the next stage will be.
Am I ok, I hear you ask. Of course not. But I am doing what I need to do to keep going...for we have a son, who needs me to keep it together, and I have a husband, who needs me to be strong and keep things going and I'm not about to let either of them down.
I know you are out there. I feel your love, your support and I hear your tears and I know you hear mine. I don't need you to send me a text or an email, I can feel you. I know that I can ask for your help with anything, and believe me, I will ask you for help. But know that I need to do this my way. I know you want to hug me and tell me you are sorry, but I cannot do this right now. I know you want to ring me or keep me company, but I cannot do this right now.
I am not frightened to ask for help. I have already enlisted help from several people already and you will get your turn. I am keeping food on the table, but my precooked leftovers are running low. I remember when I first came home from hospital after having Sebastian. My amazing neighbours brought casseroles and warm dinners, so I would not have to cook. I will always remember how loved I felt during that time, that people would go out of their way to bring us food so we wouldn't need to eat takeaway meals or worry about cooking.
I know this post is long and I know some of you already know the story. But this helps me to talk to you and tell you everything I know and it means I don't have to repeat myself over and over which I am finding very tiring. Everyday that Mark is not home Sebastian grows a little sadder. He has been so very good but I know he is hurting. He plays and laughs with his friends, but once everyone goes home, I can see the pain in his eyes and this is the hardest part for me and Mark to deal with.
Tonight I told him that we will go and see Daddy tomorrow after swimming. I told him that sometimes we cry when we are sad, but sometimes when we are so very happy, we also cry and that Daddy might cry tomorrow, not because he is sad, but because he will be so happy to see him.
I love you all and thank you for reading my story. I promise you I will keep you up to date, I promise I will ask you for help when I need it and I promise to look after myself and keep the wheels turning.
Til next blog......Goodnight all
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