May 22, 2005
I am finally posting my journal entry from the first moments of Peter’s journey with a brain tumour.
It has been impossible to do much writing as research and Peter and the children’s care have been my priority. I am slowly beginning to get some writing done and now that we have Tara’s help I intend to do much more. After all, we have a lot of information that could be of benefit to others newly diagnosed with a brain tumour. I need to begin documenting it.
It is interesting timing that Peter has just had a PET scan that does not show tumour, only damaged tissue. I guess that signifies that we are going into phase II …. Maintaining Peter’s health and documenting the journey. Good thing I have lots of notes from sessions and research not to mention a well toned memory. I am going to need it.
So here is how it all started in my words.
The Wake Up Call
27th October 2004
Our lives changed in the early morning of October 26th 2004. Peter woke me at 1:00 am apparently having a nightmare. He was intensely distressed and told me he was burning. He said, “burning, burning … it stinks, it stinks, oh it is too much, too much." He seemed to be having some strong chemical smells that he could barely tolerate. I told him he was dreaming, held him tightly and thought I had woken him. It quickly became apparent that he was in another reality. He said, “Was it you that I was talking to last week about Queen Hecephalant" I was alarmed and so was Peter. In the early moments he was aware that he wasn’t making sense. He said he was sleepy though and I entertained the thought that perhaps he was so deeply asleep that he just couldn’t wake up properly. He thought maybe he should just go back to sleep but I wasn’t comfortable with that. I told him I was going to wake him up fully to make sure he was OK. I asked him to look me in the eyes and tell me my name. He said, “Jennifer ……Hills". Oh shit. I was momentarily convinced that he was having a psychiatric break and found myself frightened and irrationally disappointed with him. That quickly passed and I decided to get him up and take him to our living room so as not to wake 13-month-old Dylan and four year old Chloe sleeping in the next room. He held my hand and I led him to the sofa. He sat down and I noted he was getting more and more confused. Seeing chill bumps on his body I asked him if he was cold. He said, “I don’t know."
“Are you warm?"
“I don’t know?."
“Do you need to pee?"
“I don’t know?"
He looked distressed in his body and was writhing. Finally he said, “ I think I need to crap." I led him to the toilet and he did have a bowel movement. He couldn’t figure out how to get the toilet paper off the roll and I had to do that for him.
His speech was deteriorating more and more. He was hallucinating both visually and olfactorally. He kept looking down at his body and talking about his hairs and wondering how they had gotten so long. I decided to call our friend Saul. I knew that Peter had experimented with hallucinogenics when he was in his twenties and I wondered if it was possible that he was having a drug flash back. He appeared like a person tripping to me having seen it and having heard friend’s stories although I haven’t experimented with hallucinogenics myself.
When I got Saul on the phone he suggested I check Peter for snake and spider bites while he was on his way over. We do live in Australia after all. When I did so I noticed that Peter had an erection. I had noticed it earlier too and thought it strange. By now Peter was reclining on our day bed and I had covered him with blankets. Peter was quiet with eyes closed. Every time I would address him he would startle as he opened his eyes. He looked like a confused and frightened child. He seemed to be struggling to take in what was happening. His ability to communicate in an articulate way was slipping severely. By the time Saul arrived to take him to our local hospital (I needed to stay home with baby Dylan and Chloe) he was interjecting gibberish into his attempts at communicating.
When I told him Saul was taking him to hospital he looked worried and a bit resistant but allowed us to lead him to the door. He had a cold sweat and was nauseas so I gave him a big bowl to take in the car. All he could say was, “scary babe, scary babe." I think he wanted to tell me he was scared and that was the best he could do.
The nurse from the local hospital had to call me for Peter’s details because Peter couldn’t tell her his name nor his birth date. She told me that he had told her that his name was Paul Hock but she knew from Saul that that was incorrect.
The doctor called me a half hour later and drilled me about whether or not Peter was a drug user. I had to assure him repeatedly that he was not before he would let that idea go. Then he said, “ I have to be honest, I have no clue what is happening with Peter so I am sending him by ambulance to Lismore Base hospital".
Saul later told me that when the doctor pointed at Saul and asked Peter if he knew who he was Peter said, “Yes, he is a banana." That would be humorous under other circumstances.
I phoned my brother, Dan, in the States. When I described Peter’s symptoms to him he immediately said that it sounded like a seizure aura to him. I am continuously impressed with my brother’s medical intelligence. Even over the phone with no physical exam he was spot on. I am proud of him and grateful for his willingness to explain things to me in times like these.
A few hours passed. I tried to sleep to no avail but I did note that underneath my worry I thought I had a little voice telling me that Peter would be OK.
Early in the morning I managed to sleep for an hour or so. Saul phoned at around 5:30 to say that he was on his way back to Mullum and that Peter had had a seizure in the ambulance on the way to Lismore. He told me that Peter was in the IC unit and that the staff had told him they would call me. Saul was surprised they hadn’t done so yet. Saul encouraged me to get to Lismore as soon as I could. He had already arranged for his wife and my close friend, Deryn, to come to our home to take care of Chloe and Dylan. He said no more than that. Although I wanted to get to Peter as soon as possible I found it a bit disconcerting that he was so adamant about my getting there quickly. It was only later that I heard Saul’s full story. Suffice it to say that being witness to Peter’s journey to Lismore was a frightening and impactful ordeal for him (my words). You see, at some point along the one hour journey the ambulance suddenly pulled over, the driver jumped out, the doors were thrown open and Saul could see Peter convulsing severely. Peter’s body shut down. He had to be intubated and resuscitated. I thank God for that driver. Peter’s situation was out of the nurse’s scope who was riding with him. He likely would have died with out the help he received.
The ambulance driver took off from that point on and Saul could see that they were in a serious hurry to get Peter to the hospital. Saul paced outside of Emergency for what seemed an eternity to him while they worked on Peter. He was glad that it had been him with Peter so that I was spared having to see him almost die. Beautiful Saul. Our families have a strong bond. We are blessed with such amazing friends. Saul is approximately 14 years older than Peter and has known him since Peter was a child living in India.
An Emergency room nurse asked Saul if he had a friend who could come be with him because “his friend was in a dire situation." No wonder Saul was so anxious to get me there but didn’t want to divulge too much either.
I called Peter’s mother in Germany (Peter’s sister, Kylie, and her husband, Greg, happened to be in Germany visiting). I informed them of the situation.
Amazingly, my first interaction with the Australian health care system was a call from the intensive care nurse to inquire whether I was on my way and to offer to immediately send a social worker to care for our children at our home if I was having trouble arranging child care. I was impressed with the friendliness and extension of help.
As soon as Deryn arrived to look after the children I was on my way. Susanna, Peter’s deceased dad’s wife, drove me at Saul and Gandhi’s suggestion. We prepared ourselves to see an intense scene. We knew at that point that he was being kept in an intentional coma so as to run tests to try to determine the cause of his seizure.
Although I knew it was going to be shocking it was…..shocking. Peter looked so incredibly vulnerable. There were tubes coming out of most of his orifices, a couple of different IV’s, heart monitors, etc., etc. He was on a breathing machine and it was distressing to see his lungs artificially and rhythmically expanding and contracting to the sound of the machine. But…..my beloved was alive. The sedative they had him on to keep him under was a short lived one that had to be re-administered frequently. When it would start to wear off Peter would start to gag on the breathing tube and would try to raise his hands up to his face. His face was contorted and I could see he was extremely distressed. The intensive care nurse was a beautiful human being whom explained everything she knew to me and allowed me to be a part of Peter’s care. I held his hands down (with effort) while he struggled and talked to him letting him know that I was there, what was happening, and encouraging him to relax. Every time the nurses interacted with him or changed anything, they spoke to him first and let him know what they were about to do even though he was in a coma and not responding. They were very loving and respectful. That made me feel so good in a challenging situation. I thanked them time and again.
His nurse told me that the fact that I didn’t let Peter go back to sleep had saved his life. Thank God I followed my gut.
I felt strong and present while also feeling shocked and worried. I sat by Peter’s side touching him and talking to him for hours on end. Once when they needed to change the breathing tube they suggested I take a walk because it would be an intense thing to watch. I went out to the waiting room and had a big cry while Susanna was engaged elsewhere.
When I went back in I sat again by Peter. Susanna and I were both quiet and meditative. At some point I perceived light beings around Peter’s head. Three of them. I accepted the strange event and felt it to be positive. It was obvious that these other worldly beings were benevolent and were working on Peter’s head. I simultaneously partially saw them and partially felt them. It is hard for me to explain this phenomenon but I felt comforted by them.
Meanwhile Peter was checked for a number of possible illnesses. The CAT Scan showed nothing, meningitis was ruled out, as were many other things. An EEG was done and epilepsy was not active or evident.
All the hospital staff I interacted with were friendly and competent. The intensive care doc, Craig, personally used his mobile phone to call my brother Dan internationally to let him know what they were doing n the ICU.
In the early evening Craig decided to bring Peter out of the coma. He came out well and I was overjoyed to have Peter recognize me and respond well to questions. He was very fragile but hadn’t lost his sense of humour. One of the first things he said was, “it is a good thing this happened in Australia and not America." In fact I had the wonderfully bizarre experience of having to sign a form stating that Peter’s hospitalization was a non-chargeable admission!! This brought a feeling of relaxation to my belly. I could place my focus unimpeded on Peter without worrying about how we were going to manage the healthcare bills. I am more than happy to pay slightly higher taxes here to receive this support. Even if I never use the medical system again I find a satisfaction in knowing that I am contributing to others in need also being taken care of in their moment of crisis.
Peter’s short-term memory was a bit off. He seemed to ask me the same or similar questions quite frequently through the evening. He ate some broth and we enjoyed a good cuddle. It was hard to leave him but it had been a long day away from Chloe and Dylan.
Dylan had never spent so many hours away from me. I knew he was in good hands with Deryn but he did cry when I arrived as if to let me know how he felt about my absence.
Getting the children home and in bed was a hectic event. I was exhausted but very on for the children feeling for their upheaval. I explained to Chloe that Papa was sick and was staying in the hospital so the doctors could help him to heal.
LIQUID FIRE LIGHT VISION
Once the children were asleep I made a few phone calls and readied myself for bed.
While doing so I was musing about Peter’s interest in shamanism and the Carlos Castaneda work. In the world of shamanism there is the belief that we can be attacked by errant inhuman beings or other worldly entities. I wondered about Peter’s current situation. I am not sure if I believe this literally but I felt quite passionately that if such a thing were true those beings would have to get passed me before doing any more damage to Peter. At that moment I had a very spontaneous vision come to me in which I looked down to see my body made of a shimmery, golden, liquid firelight. I was astride the most magnificent male lion I have ever seen who was also made of liquid firelight. I held some sort of staff in my hand and felt completely fearless and invincible. I saw darkness all around me and knew that I was going into battle with this malicious energy. I let out a loud yell … a battle cry, the lion roared and we sped forward into the darkness. As we surged ahead I looked over my shoulder. To my amazement I saw all those who know and love Peter flanked out behind me also rushing into the darkness to do battle on Peter’s behalf. As we continued on deeper into the darkness I had the realization that we were inside Peter’s brain. At that moment the vision broke. I felt shaken and exhilarated by the vision. It seemed like more than just my imagination. I felt empowered to help Peter through his ordeal.
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