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.
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