Characters in My Life: Uncle Pete

I have two favourite uncles. Neither are blood related. Neither are your usual run of your mill type individuals. Both were English teachers. Both are eccentric.

I am in my 30’s and I could never bring myself to calling either one by their first name alone. Uncle Peter or ‘Uncle Pete’ as he is affectionately known, was the MC at my wedding. I am not sure why but I am always reminded of images of Sir Peter Ustinov playing Hercule Poirot somewhere in Egypt, on the Nile, when I think of him….. He is one-of-a-kind, animated, intelligent, with a deep, deep love of Sparkling Shiraz. 

He has pulled me aside 3 times, since I got sick, to share his life advice with me. I cry each time.

I have spent every Christmas Eve at their house since I was born. It’s a German/Russian/Ukrainian thing. Vas and I grew up with his 3 sons (I was born on the same day as one and my brother was three days part from one other). Like with most of my parents friends, I was the only girl in their circle of children. But I don’t think this was ever really a factor in our life or upbringing. 

The Christmas I got sick, Uncle Pete was scheduled to have a double knee replacement. As the night went on I began to tire quickly. That Christmas I was supposed to be pregnant. Instead I had just been released from hospital, was newly ‘child-less’ and had squeezed in my very first round of chemo. I had a new haircut, a new diet and what I thought was a new outlook.  

He walked me to the car as I was leaving the house and said to me ‘You are like my own daughter and so I am giving all my strength to you’. I felt like there I was a volcano about to erupt in my chest. He needed this strength. Not me. How could I accept? This wall of emotion rose inside of me and I didn’t know what to do with it. I think I tried to graciously accept his offer (not something I have ever been good at!) but was so overcome I began to sob. I could no longer keep it together. And it is a theme that continues whenever he steals a quiet conversation with me. 

The second piece of advice he shared with me was at my Mum and Dad’s house. He said that all you ever need is love. Nothing more, nothing less. That is it. I did feel like I was at a John and Yoko sit-in for a second, as his comment caught me by surprise but his words have remained with me as I desperately try to embody this life philosophy. Love is the only thing we come into this world with and hopefully it is the only thing we leave with. If I could feel it every day, especially at the moment. Things would be easy. Well, easier….

And finally yesterday, while we sat together briefly at my grandmother’s funeral, I found out he has written three poems for me. One of which is only three lines long. He recited it to me. O oh, here comes the volcano. It’s starting to move in my chest again. I felt like I might burst.

You see, I jokingly blame Uncle Pete for introducing William Blake to my Dad. I know the importance of the English language to him. So for someone, anyone to write a poem for me. Let alone three. Is a great honour. 

He told me that it was a culmination of his 64 years of work.  

Three. Simple. Beautiful. Heart-breaking lines. 

I imagined him creating them. I thought about why he had written them. Just for me. This beautiful gesture has touched my soul so deeply, that I can’t put it into words.  

So i took a selfie at a funeral, mainly to stop me from crying when i heard my poem but also i had clean hair for the first time in two weeks and i actually felt good. I wonder how wrong that is… i just had brain surgery x2 so i dont really care. and for all those who asked, no it was not a wig. its my own hair.

Radiotherapy Day 2: Down The Rabbit Hole

**slightly morbid post alert**

Today I crashed and burned. I woke having never felt closer to death. Every tumour in my body felt heavy and active. The ones in my chest, my arm and my head. I told Alex I felt like I had gone down the rabbit hole and no one had followed. And that was okay. I felt safe. I was alone, but not lonely. I was exploring and didn’t want to be disturbed. But I was teary because I felt as though I was a circle being pushed into a square. It didn’t feel right. I have come back to this world and it’s too fast, too hard, too cold, too clinical. I am not sure where I fit anymore. I want warmth, gentleness, kindness and love. I want soft edges, blurry lines, luxuries. I want a support I can’t describe. I want to put on weight. I want health. I want no pain. I want peace. I am desperately trying to re-establish a life but running on empty.

Alex can’t wait to get out of the house. If he stands still, he might have to breathe it in and I feel it is all too terrible. I am not sure he understands me or where my head is at. Our communication feels strained, forced. Looking in I wouldn’t get me either. I don’t give too much away. Conversations take up precious energy and I don’t like answering the same old questions. Did you get any sleep? How do you feel? What do you need? What can I get you? Do you want visitors? I don’t want my house filled with people. I don’t want to speak. I am extremely comfortable with myself. Maybe too so.

On Friday I had my first hit of radiotherapy in my shoulder. I imagined it was like having your teeth cleaned at the dentist. There was water and plaque flying everywhere only it was happening inside my shoulder. It was buzzing afterwoods. It felt good. Generally it flares a little and you get relief with 48 hrs. I am reaching that time point, but the relief seems to be nowhere in sight. I think everyone assumed, this would just fix it. Me included, but I still need help to dress, shower, cook, clean, chop, carry, everything. I have had to learn to clean my teeth with my left hand and flush the toilet. I need clothes that are easy to get on and off. The stretchier the better.

So today has not been the greatest day. But I think I sniffed death and I didn’t like the smell. I think what you do whilst in the despair, in your black hole, defines you. I made myself a well balanced cooked lunch. And baked my Dad a cake (it’s his birthday) and poured lots of love into it with my one good arm. I also meditated a lot (in my favourite spot) on my balcony. It is a blue sky day, not a cloud in the sight and the birds are out in force. Everything appears very bright. I think I just clambered out of the rabbit hole all by myself with a little more insight than I had at the beginning of the day. With a new sense of certainty that anything is possible. Full stop.

Home Day 2: Sick of me yet??

Today feels like a wonderful day to be alive. I wondered what I would first do on leaving the hospital. Have a long hot bath? Wash the hospital smell out of my hair? Get into fresh pyjamas and sink into my pillowy bed? Nope… Not me. I went to see my therapist. I needed a Zoe hit. I wanted to be reminded of my power. I wanted to use the momentum I had cultivated and keep moving. Even though I was a bundle mixed up energy. Teary, defiant, determined. I wanted to talk about intensifying my healing/curing? How can I use the new found strength radiating from the pit of my stomach to push harder. To rise up. Like the Terminator (all of my meditations in Fiji had involved some sort of imagery of my face as the Terminator – obviously I knew I was about to get some new titanium plates in my head) 

I believe the scars on my head have already healed. They are tight, like I’ve had a mini facelift (don’t try this at home!). The stitches will come out on Monday. I am a natural born healer. I know this. It’s in my gene’s. My skull quickly melded itself back together. My surgeon has been impressed. It has been a simple process, why should stopping the cancer be any different? I can accept the diagnosis, but there is no need to accept a prognosis. Bodies are marvellous things and I just got to experience it first hand. In all it’s gory!!

Yesterday I also learned that my sole surviving grandmother had broken her pelvis the day I was admitted to hospital, that she was unconscious and it was just a matter of time. Since being diagnosed I had been determined to outlive the sly old fox, but I have always been intrigued by her extreme (or some might describe as dark) strength, relatively good health and stubborn vitality throughout her 96 years. 

I woke at 4am on the first morning home and rolled to Alex. ‘She’s gone’ I said to him. And she was. She passed about 30 mins prior. 

So I had learned all this information on leaving the hospital but was determined to see and speak with Zoe and I talked about whether or not this is still possible for me to stop and overcome. I believe even more so now than ever. This has been my low point. I am removing the word heal and replacing it with cure. 

We talked about my first diagnosis being a ‘sickly romantic’ notion of cancer. A mixed of emotions – sadness, grief, longing. Feelings I’d never truely experienced in my being before. All because of Moses and the decision we had to make. This time is much more perverse. Blood and guts. Right up my alley. They cut my head open for god sake and scooped out part my brain!! 

Today I will find out more about the radiation on my brain, the extent of my new disease, I will have radiation on my shoulder for the first time and wash my hair a little bit more. I am nervous, yes. But today I am so grateful to be alive, functioning fully, without any deficient. After two massive brain operations less than a week ago. 

Hospital Day 12: Ding, Ding, Ding…. It’s Home Time

I wrote this post the other night, when my mood was so high and my mind so electric that I needed it out of my head and on to the page. I wasn’t sure if it was the pain killers I’m taking for my shoulder, but I felt so happy even at 2am whilst writing it. 

The following day I crashed though, not enthused by the new junior doctor I’d seen or the day nurses looking after me on the ward, even the options available (which were described so differently by the registrar) and probably I was part exhausted from all the neural firing and lack of sleep the night before. After all I still have two massive scars and close to 30 stitches in my head. But this seems to be me at the moment up one minute down the next. And I am accepting this. Yesterday evening I was all smiles, I felt calm even managing to meditate for long periods of time throughout the night. Getting into a bliss state. Being very comfortable in my own company. Being alone. During the afternoon we had met my new Radio Oncologist to talk all the possibilities. He filled me with hope and a sense of control. I was reminded of some of the imagery I had seen after surgery. I was reminded that to succeed in this next step I need to stay grounded. Not get too heady. Focus. I saw myself as a sketch-like cartoon character wearing a summer dress with Wellington boots.  

 I was standing on a small hill underneath an apple tree, when my boots filled up with concrete and an apple fell off the tree onto my head. I felt like Einstein or was that some other scientist?? I knew then the importance of getting back into my body. Out of my head and focusing on obliterating the 7 small (maybe more) lesions they have found in my head. We have a new plan again (well, sort of. That will be clearer come Friday once the latest scans are reviewed). 

At the moment it all feels a little more considered than when I was first diagnosed all those months ago. No real different. Terrible, but achievable. Only this time I understand the system better and there is less emotion associated with it. I say no more, I interact on a new level. I have regained a new sense of calm, of determination, of desire. Yesterday I wanted to be a pioneer! Pushing the boundaries of science and medical research in this country. The protocol for targeted radiotherapy for this number of lesions in my brain has not been established at this hospital yet. They are having successs with up to 10 lesions in other countries and even 15 in Japan, but currently the protocol in Australia sits at 4 only. This means whole brain radiation if I don’t go down the targeted path. Yesterday I was so ready for it. I want them to write papers on me! I want to be that guinea pig… I want to be controversial. I truely feel that when I am energised and full of potential.

So the next chapter for me begins. Just as Venus went into retrograde, I will start planning for new treatments, new docs, new nurses and a Hannibal Lecter type mask. I leave hospital this morning with a little less brain matter, but a new look on life once again. It’s dawned on me how strong I am. Think I will need to pinch myself when I get in the car. 

Hospital Day 8: Doctors are Dicks

I promised Alex he could proof read this post before I published it, for a few reasons…. The title for one for a start! (my brain is definately still swollen and obviously drug addled), the second is that he is staying at his sisters place tonight who is a lovely doctor and definately not a dick, third I probably wouldn’t be typing, writing, breathing, speaking, or walking if I not had the dream team of doctors, specialists, surgeons all at the top of their game, all acting their with my best interests as their primary concern, all focusing on the quick, safe and effective removal of the large tumour from my cerebellum that was stopping fluid move down my spinal cord. So I survived op #2. I have a new hair accessory to prove it. A white ribbon with some staples. Nice! I also feel like there is a game of Tetris going on in my head. Things seem to be moving in a downwards direction. It’s weird. And noisy. 

I’m not sure what is worse now, being incubated in ICU or being partially awake through the night and listening to the goings on. I begged for the tube to come out as soon as possible. I was heard loud and clear. It came out as soon as the pins were removed. I’m that annoying patient. I know a little bit about a little bit. But I did learn a lot the second time round. That is, you hear everything in the unit when you are partially awake and that your inhibitions tend to disappear! One nurse obviously read all of my notes from 2013 and walked in and said ‘WHAT IS WRONG WITH THIS WORLD!?’ During the first op, there was such activity. It was noisy and bright. I heard all about 12 hour shifts, who was on when, who wasn’t pulling their weight, time sheet completion, I heard questions about should we wake the craniotomy patient or should we just give her some more medazolan. More medazolan, Yes Please! I had a craniotomy. I feel like I should be a character on the Simpsons…

The best conversation I got to hear was from the trainee ICU docs… Hence the title of the post. I know they play a vital role. I have friends and family who are doctors who have been through this process, so I mean no disrespect at all when I write this because how do you learn to be a compassionate doctor that still is able to go home at night and function normally after all they see? I am no expert. I don’t want to be. 

While intubated in the first op I got to hear the junior doctor’s conversations. During the second op I got to see them all in the flesh and hear their conversations. I took pics because it was so unreal. I had heard them talking about ‘pealing off’ for a coffee run the night before. Trainer Doc needed a strong latte. Another needed a weak one. There were 4 of them, one needed to see a patient in the ACU that left 2 to get coffee. ‘Who wants to volunteer?’ Only Trainer doc saw me face to face that first night so I knew what she looked like. I assume the others weren’t allowed to see me?? Question for my niece who is a 2nd yr student. To them I was just a medical chart. There was such indifference to my situation, no empathy. Absolute detachment. Maybe that is what is required? I am not in their shoes. I’ve never done their job. They are sleep deprived too, they are just trying to prove themselves. Challenge themselves to be the best they can be. I feel the same. Just going about it in a different way. During the 2nd op, I got to see all four of them. They all stood outside my room peering through a window. Like they were at the zoo. And I was the monkey exhibit.  I sent this pic to Alex and said it was feeding time. No one ventured in to look me in the eye. To ask me a question. To touch my hand. To see if I was determined, had a will too live, too survive.  I rolled over to give a sign I was alive and semi conscious and mouthed ‘I am a human being and I can hear you!’ One said ‘Oh, look she is awake’. He sheepishly waved at me through the glass. They all turned.  I semi waved back, then tried to flip them the bird. ‘I am a human’ I said louder this time.  

 They never did venture into my room. I never spoke to them. But I survived and that’s what matters the most. That is my focus from here on in. Today I am strong because of a team of doctors who saved my life. I think I’ll let the enormonity of that sink in.  

I think all the drugs are starting to wear off cause I’m feeling all lollipops and butterflies. Maybe they did get the nasty gene after all!?? Now is a time for healing. Now is a time for curing. 

Hospital Day 5: Did They Take The Right Part of My Brain??

That is the question my brother and husband asked when I came out of surgery. Did they take the nasty gene away? I think you need to have a little bit of bitch to survive though, so I am happy with what they removed.

The surgery wasn’t so bad, nor the recovery. I was up and walking as soon as I could. I have no neuro issues. I cut laps around the ward just after I was bought up. 

The worst part was the breathing tube. I couldn’t swallow and I remember trying to signal that I wanted it out. ‘No, no not until the doc gets here. Well just give you some more profofol to calm you down.’ Hang on! ? Isn’t that what killed Michael Jackson?? Oh well, best enjoy it then. 

While I was being wheeled in to theatre I tried to listen to the song I was singing. I was humming ‘Roar’ really softly. No words, just the tune. It was calm, not angry, gentle and soothing. Very different to last time. When I was screaming it. 

After they got my tube out I had to go to have a CT scan. On the way there, I knew they had taken something out of my brain because I was singing an old ‘CC’s’ chip ad from the nineties. And I have no idea where that came from!! Or the significance. 

Backing up tomorrow for the second op on the front of my brain. I told Vas and Alex that they have a second chance to get rid of any nastiness. Hahah 

 
Ps thanks for the love and support. I am hearing it loud and clear.

Hospital Day 3: Videos and Surgery

Today is the first of my surgeries. Depending on how I recover the next will be on Thursday. 

Seeing as though they are removing bits of my brain I wanted to post the final cut of the video I did for work. It was shown last week and I got to see it just before the headaches began. I haven’t had time to ask if it’s ok to share it on here, if I am infringing copyright laws, but today I don’t care. If it needs to come down, it can. 

I am so proud of this video. It fills my heart with such pride it wants to burst. I worried that my answers were rubbish, too clinical, too robotic. I wasn’t sure there was any usable material. My fears were allayed immediately. I love the delicate, sensitive approach they took. I guess that came partly down to me too as the subject matter.

Hope you find it as uplifting and inspirational as I did. I think it is truely beautiful. 

http://we.tl/KYdtxXH0q1