This is part 2 of a 3 part blog. If you haven’t read part 1- read more here
I was feeling groggy and I couldn’t move my head much. I looked at the professor with his groovy surgical gown on – shaking his head at me concerned.
He said “I tried many times to get blood vessels to transplant but none of them worked”
“So did you try a vein in my leg?” I asked
“No, I ended up using muscle from your jaw”
What???? The plan was to put a hole in my skull (about the size of a 50c piece) and bypass the affected area. They basically plug in some plumbing (hopefully a blood vessel) to get blood to the part of your brain that has been missing a decent blood supply.
My professor had taken muscle out of my jaw and transplanted it into my brain. This concept didn’t seem to make sense to me. “But aren’t muscles solid and blood vessels hollow?” I asked him. “How does THAT work?”
“The muscles will learn how to become a series of hollow blood vessels but it will take some time and recovery will be a lot slower than what we anticipated, I’ll see you later and talk more”
I was relieved. I was alive wasn’t I & I wasn’t a vegetable!
I was lucky in so many ways and I knew it.
I had had already an amazing life, achieved many things, travelled a lot overseas and had met some extraordinary people. I had no regrets at all.
I knew that if I had died, I had been happy with no regrets. I realise many people cannot say that.
Some fun facts:
- Your hair grows about 1cm per month
- The feeling of having a shower with water touching your scalp is incredibly sensual. Most of us women have our heads covered in hair not long after we are born so you can’t remember how it feels. It feels incredible!
- Your cheeky girlfriends think you look hot when your head starts to resemble a toilet brush and want to be seen out with you.
- You get incredible service in shops etc. even when you wear scarves etc.
- You don’t have many nerve endings in your head, so it’s not that painful, just strange looking.
My family were relieved and if you every go through something life threatening, remember the people around you are grieving their possible loss of you as well. I spoke with someone recently about this who admitted that when she stopped feeling sorry for herself, she realised her family and friends were going through hell…and they needed support from her!
But back to the hospital. That muscle transplant had an immediate reaction. I felt fabulous!
I had forgotten how well I could feel. Once out of intensive care, I shared a room with an older lady who had had major back surgery, she said to me “You seem so happy”
Well I must admit I look like s##t, you would too with your head bandaged, a hole in your head, your face swollen and a drain hanging off your head.
I looked like I had been in a round of boxing and had come off 2nd best.
But inside I felt amazing, I said to her “compared to how I felt before the operation I feel on top of the world plus I am alive what more could I possibly want?”
After sharing our stories she said to me “You have got to write a book” to which I said with a grin “maybe one day but another chapter is about to begin!”
I was out of there in 3 ½ days! (I kept my side of the deal with the hospital & got out early)
The professor wasn’t kidding when he said recuperation would be slow.
My body felt more “alive” but my head felt disconnected from my body – I was already familiar with this feeling leading up to the operation. You can think thoughts but the body takes so long to follow it’s instructions that you get confused remembering what you wanted it to do in the first place.
Boy can I relate to how stroke sufferers feel!
It feels cross between your head is filled with a feather pillow and slowly swimming underwater where time slows down and all the external noise is drowned out.
The frustrating part of it was I had forgotten a lot of the things you do without thinking. All the mundane everyday things like how to get ready before going out. What did I do when I get out of bed, did I shower or eat first? Where do I put my keys when I walk in the door?
We all have our little morning routines when we wake up, you do it every day without thinking about it.
Just imagine you can’t remember any of it?
I realised it took me 3-4 hours to get ready to go out. I became an avid list maker to know what to do next. FRUSTRATING! As someone who had always achieved a lot every day it was a hard reality. I am really not sure how my speech was straight afterward the operation but beforehand I had started to stutter so I slowed down my speech pattern down to avoid stuttering.
My confidence was taking a battering.
It probably did not help that I was no longer in familiar surroundings. I had sold my house and had been living with my brother and his family and also couch surfing at girlfriends places who all wanted to look after me. But all these places were unfamiliar and “not home“ to me.
I had bought a unit in Dee Why before the operation and put my furniture into storage and handed out keys to tradespeople with instructions of what needed to be done at what time by whom. I’d given it careful thought as to what I would need if I was disabled. I hoped that none of the tradies would need to see me after the operation, of course anyone renovating knows that things don’t always go to plan. Concrete cancer was found in my unit, I already had had my new floors & carpets put down, the floors needed to be ripped up and the concrete jackhammered, the painter would also need to come back. I tried to warn them that I looked different now.
What can you say to people when the look of horror cannot be hidden from their face when they see you?
I realised that some people have to live with people looking at them like that every day.
I cracked jokes; I reassured them that even thought I looked very “different” I still had not lost my sense of humour.
You know that old saying? “I need that like a hole in the head!”
That usually broke the ice quick smart! (and yes, to this day I still have that hole in the head underneath all my hair). It became my new catch phrase.
The word had obviously spread to not only the small business community who were amazing in their support but also old colleagues from my gas industry days. Lots of my old friends (blokey blokes) were phoning me and offering to be my driver, take me shopping, whatever I needed they couldn’t do enough for me, it was humbling. I realised these people needed to see me with their own eyes to see what condition I was in so they could stop worrying. I had family in Austria who were concerned “When could I be well enough to see them” they asked.
It was all a big unknown, it was all down to how fast I could heal and be “normal” again?
The “elephant in the room” question to me was what would be my ‘normal’?
This was February 2004 and had truly lost my confidence.
I was not well enough to look after myself yet, that was obvious.
I became obsessive with healthy eating and lifestyle to promote healing. My body and mind were doing strange things, the medical tests & medications were endless.
I had enough MRI’s, MRA’s and angiograms to start my own library. Blood tests were continuous, friends wanted me to try their natural health alternatives, visit their doctors, I tried many, some helped some didn’t.
The doctors were all unsure as to how to help me next. I had an amazing osteopath who I had used for years for various back problems from lifting heavy items in my gas business. He was great in keeping me on a steady improvement with the help of traditional GP’s.
No one had a patient with this medical condition before.
About 4 months before my operation I met the man I live with now.
He was interested in buying my business. We could not agree on a negotiated price, I knew he wasn’t the right fit for the business. He said I was asking too much, we haggled over price.
We became friends. It was clear he was becoming interested in me. I told him there was no way it could become serious as I could end up in a nursing home, that wouldn’t be right. He had only just met me.
He was persistent. It did not look like a good start of a relationship to me.
He was there when I went into surgery – my family ignored him.
He came in to see me afterwards. He did not flinch when he saw me. He phoned me every day.
He cheered me up, he made me laugh and he was a godsend.
I thought he would get on with his own life afterwards when my family kept excluding him from everything.
No, he didn’t care; he said he cared about me.
I began to feel like I was a burden at my brother’s home. I was sleeping in one my nephew’s beds, I had been there for a couple of months. I was trying to work out what to do. One night at the dinner table my youngest nephew started crying, I was scary to look at. My face and body was swelling in all different places, the poor little mite. I was not a pretty sight.
“Come and stay with me” he said. “I’ll look after you”
Those of you who know me know I am very independent. How well could this man look after me? What if he was a nightmare? What if he was some secret crazy man?
This man was certainly a character.
I was in turmoil, “what if I need help showering & toileting?” I asked him directly (the thought just horrified me). “Then I’ll help you”.
And that my friend is the person is that I love and live with now.
I know we look like the odd couple and he is many years older than me.
He looked after me and understood that sometimes I slept for hours during the day and then needed to go to bed early too. Sometimes I couldn’t work out how to turn the shower on or off, sometimes I completely mixed things up but he never made a fuss about it.
He was a man that lived in a routine and I needed routine. He shopped, cooked, washed my clothes and looked after me in a way that I had never felt looked after before. Ever.
Nothing was ever a problem; he was calm and easy going and just what I needed at the time. His place was peaceful and quiet.
I did work out we were different from each other! Very Different!
We had different tastes in humour, beliefs, and political thoughts, would it/ could it work? I realised none of that matters. There is no right or wrong way – sometimes you have to just accept that that is the way people are.
Who was I now? I knew what I had been and had done. But I had no idea what I would be able to do again.
I was in his safe cocoon for about 4 months when I felt it was time to break free and move into my unit which had now been completed. I had to prove to myself that I was capable of looking after myself. I wanted my own space with my familiar things around me again – my home.
I was nervous, excited and a little frightened about being by myself.
My fella was also concerned. I still had to concentrate to do every day things. I had already left the cooktop and the iron on at his place and made I made sure I had all the right electrical cut out switches installed in my unit. I tried to think of every possibility so that my new home would be safe and easy to clean. Medically I was healing but it was s.l.o.w.
Two beautiful girlfriends were determined I would spend a wonderful day out with them, they organised a whale/dolphin cruise for me to join with them and their friends. Anyway, the sun was shining, we were having so much fun and laughter and then I felt it. The blood supply to the brain had stopped again. Noooo!
Yet again I was told doctors didn’t know what was happening; recuperation will be slow “we don’t know in cases like yours. When you know let us know!”
“I can’t be expected to live my whole life feeling nothing surely! What’s the point?” I asked the doctors.
“Just give it time; you still have more healing to do. We are keeping notes as we are learning too.”
My 40th birthday was coming up and I knew should have a big party to celebrate that I had survived.
I also realised it would be tiring for me just getting ready for it, let alone spending a couple of hours saying hello and being hostess. I was determined to thank you to these wonderful people surrounding me. I was tired when it finished but happy to see all my friends.
My big wins now were all small things and I came to realise that life is not about achieving the big things but celebrating the small things in life that happen every day or week. They make the best memories!
A girlfriend took me walking along Dee Why Beach. The aim was to reach the pole that is where surfers use as a point on the northern end of the beach and walk back. This took about 4 months, maybe longer but the day I reached it I was elated! I know it must have been frustrating for her to watch. She was the one who collected me from the hospital and my progress was being monitored constantly by her with love. She was delighted when I finally moved into my unit so she could keep an eye on me!
Success is different for different people at different stages of our lives. I can’t tell you how wonderful it felt to achieve walking to Long Reef and back to Dee Why. I may have had a few rest stops along the way but I was improving! These were big achievements to me and I still remember how that achievement feels.
The end of 2004 was a high and a low for me. In November I finally felt well enough to travel back to Vienna to visit my relatives who were still all so concerned about me.
It was wonderful to see them, they didn’t always understand why I was so tired but I was very happy to be with them and show them I was ok. I just wished they weren’t so far away, I was so grateful to be able to see them again.
December was time I learned some more lessons.
My mum passed away 2 days after a girlfriend who ran a Happiness Institute died.
I was sad.
My girlfriend died as she had refused to see a doctor until it was too late. Her death was entirely preventable. She had the belief that all pain is manifested by our own beliefs. It had nothing to do with her beliefs and everything to do with her cancer that she did not know she had and could have had treated if she’s gone early enough to a doctor. She left behind a devastated husband and 2 kids. My mum was a lesson in lifestyle choices but that’s another story, she had been living at various nursing homes the past few years. Mum’s funeral was easy to organise due to the great local business owners I knew.
Two other business friends also had ministrokes that year and I became the “go to girl” for tips and hints on dealing and living with the repercussions. Sometimes you just need someone to reassure you that it is normal to dribble out of the side of your mouth after a stroke or mini stroke and keeping a sense of humour about it is essential! If I think back about some of the things we used to joke about it would make the paint peel….
So many funny stories I could tell about this time as I was slowly healing and getting stronger though my mind and body would let me down many times. I was impatient to get going again. My mind was getting stronger but my body was not keeping up.
Then I got a phone call from a friend who asked, “Are you still wanting to start up that women’s networking group that we talked about?”
”Let’s make a time and date” I said.
I was ready.