Radiotherapy Treatment #2: A New Visualisation 

I get to wear my mask for the first time today as they zap my brain! I’m kinda excited….what a sicko. My Dad is coming with me. I think he might be excited too. 

I read a book when I was first diagnosed. It’s the thought that counts. By David Hamilton. It among a number of books and people, helped set my path and allow positivity into my life. 

I had started reading his second book. How your mind can heal your body. But I couldn’t get into it. Hamilton makes it clear from the get go that this is just his theory, he could be wrong and that there isn’t that much science behind it. I needed more at the time and so put it away. Since the surgery it has become a bit of a night-time read for me followed by an episode or two of Veep. 

Last night I saw a new visualisation. I don’t think Jabba the Hutt is going to cut it with these new lesions and I’ve been ‘seeing’ this for a while in my meditations, contemplations and general daydreams….but last night I heard music, I saw myself ‘in it’, and it felt more real. I hadn’t taken my full gamut of pain meds so I don’t think I was hallucinating either. 

*Cue Nina Simone Music*

  It’s a new dawn. 

  It’s a new day. 

  It’s a neeew life for me. 

And no, I am not taking inspiration from The Bacherlorette ad, although I sometimes wished I blogged about that show instead of my actual life…but I am strutting along some city street. There could be some slow motion action too. 

So I am dressed as a tarted-up scientist. Tight white lab coat, slick back hair, dark rimmed frames, Nana Merle’s diamond earrings, shiny lips, air-brushed skin, fabulous black heels. We have a photo in our study that is quite close to what I look like (minus the lab coat and frames). The photo was taken in a photo booth in Marylebone Station one cold winter morning as I needed it for a monthly rail pass I just bought. I took the remaining photos home to show Alex, cause I didn’t think it looked like me. He asked who it was, ’cause it certainly wasn’t the woman who left the house each morning’ and he wasn’t convinced it was the woman he had recently married. The photo travelled home with us because we always wonder who she was….I guess now we know. 

  
So I’m confidently strutting the streets in my fabulous get-up to get into my body (the lab)….. which is where all the glamour ends, reality begins and my actual visualisation starts.

When I was a bench scientist, my main role was to grow bucket loads of decidual endothetial cells in petri dishes. These cells line the many blood vessels that are found in the juncture between the uterus and the placenta during pregnancy (have I lost you…too much information??). 

The main problem growing these cells was that the petri dish could become contaminated with another cell type called fibroblasts. They are a type of connective tissue and they quickly became my arch nemesis. Overnight, the fibroblast could multiple and cover the whole dish leaving only a few endothelial cells left to replicate, rendering the sample useless for future experiments. 

One way to manage the growth of the fibroblasts was to lug a whole microscope into a laminar flow hood and then carefully suck out the dodgy cells with a long glass pippette. (OK, definately lost the non-scientists! Maybe the photo will help) 

 It meant that the right cells, the endothelial cells, had a chance to grow and fill the dish, ready to harvest and freeze for future experiments. 

So that’s what I’ve started imagining in my body. A glass suction pippette sucking out the various areas of ‘contamination’. 

So I’M FEELING GOOD!!!!

Pre radiotherapy treatment 

What a brutal week. Funerals, family, Hannibal Lecter (sorry, Spider-man) mask fittings, removal of my 30 stitches, pain management plans, breakthrough pain med conversations, 5 meals a day, visitors, new car test drives, kitchen fitouts and much more meditation. Me = Dazed and Confused.

  
I always knew the surgery aftermath would be harder than the surgery itself. But what a readjustment! 

Each day throughout the week, Alex tried to convince me to go back to hospital. Each day I would resist, find a new excuse. My surgery has gone very well and I am in no pain from my scars, but my other pain began to spiral out of control. Life got busy quickly, I was not ready for it. I withdrew. I also have a different focus now and so my tolerance is lower. Much, much lower. 

It has felt chaotic, like people around me are running around with their heads cut off, not really know what to do or how to behave. And how could you blame them after the last crazy couple of weeks!! There is so much adrenaline still coarsing through the air but I need for it now to abate. I need to start channelling it into my parasympathetic nervous system. 

I have been surprised at the variability in my body from one day to the next. (Maybe, that’s a lie…. I think that I have been up and down from the beginning and maybe it’s just a bigger spike now…) I attempted to walk the length of my beach this week. It was exhuritating. I was distressed. Alex was distressed as I gripped his hand, coughing and spluttering every step of the way. I was determined. And I made it. Weak one day, strong enough to paddle board (in dress up) the next. 

  

There is so much still unknown in terms of my next treatments and my recovery. They are not going to treat me like a normal patient (surprise, surprise). They will try something ‘novel’. So much is still up in the air. And this hasn’t helped those around me. I’ve also not had any systemic therapy for sometime now. I am working on changing that as soon as possible! I think I need it. 

The most wonderful part of my week is that Alex is back in my realm. He has taken one huge leap, one I wasn’t sure he would make. If I had a choice I know I would think twice! But he made it with flying colours. x

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.