Not wanting to ‘pull focus’
Starting the journey – birthday 2017
I thought about adding all this content as blog posts… that’s how I drafted them. Dipping in over the past few months when energy and motivation permitted. But I didn’t want to turn over my whole blog to what has been going on for me (us) this past five months or so (although it would make my posting activity a little more impressive!).
So I have decided to add it as a page. I’ve headed each chunk with the date it was written and run them newest to oldest down this page. So if you want to get the ‘story’ in the correct order, scroll down and work your way back up. Hopefully my anchor links will help you navigate.
It’s not a great read. It hasn’t been a great journey. But I wanted to share it in the hope that others who might be going through similar circumstances, and manage to stumble across this, might draw some hope from my experiences.
August 31 – And suddenly, I have arrived
A token of my appreciation for Day Oncology
Today was my last day of chemo.
I headed off to Epworth Eastern with a bag of chocolates, a ‘thank you’ card and a small, purple knitted bear (purple for oncology) made by a dear friend and clothed in a purple scrubs coverall made by myself.
It seems in the same moment an eternity and a split second since Valentine’s Day (my first treatment). Cycle 4 and 5 (after my surgery) dragged interminably and I felt as if I would never reach Cycle 6 Day 15. Yet, suddenly, here I am walking out into the brilliant sunshine on the last day of winter.
I have mused on this day for some time. After the final radiation treatment of my previous cancer event I felt ‘abandoned’. Having endured seven weeks of attending every week day, seeing the same nurses (and sometimes the same fellow patients) and having caring practitioners fully focused on me and my welfare, I was suddenly thrust back out into the world, to manage life again on my own.
I wondered if this would be similar… but no, today I feel anything but abandoned. I feel light. This feeling, right now, as close to cancer-free as I could hope to be, is what being well feels like. I need to hold on to this. I need my body to remember what this feels like so that should things slip, should the worst happen and I start to feel unwell again, I am ready for it. Ready to notice that niggly discomfort that doesn’t go away. Ready to question that strange ‘new’ pain. Ready to listen to my body and take my concerns to my oncologist without delay.
Today is also my first day.
August 21 – My winter garden
The misty beauty of our ‘garden’ in winter
I have been pondering the difficulty of ‘staying positive’ (which everyone tells me I need to do to beat this), and the lack of mastery I seem to have over my emotional state. Why do I experience negative moods (depression) as all-encompassing, believing I have little control over how long it takes to get out of that black hole, and my up-moods always seem so transitory and random.
These two states of being seem to me to have entirely different properties, and yet, they really are just the flip side of each other.
If I think of my depression as a winter garden, bleak in some respects, lacking sunshine or flowers, yet with its own innate beauty – wild skies, life-giving rain, sunshine sparkling on rain drenched leaves… I want to learn to be comfortable in the moment of it, enjoy it for what it has to offer right now, accept it, and not yearn for the summer garden. This seems so hard to do when this garden feels like my default position.
Conversely, my summer garden is full of bright sunshine, the vitality of life and growth, vegetables growing and ripening, bees full of energy, busy on the flowers. I seem more able to enjoy my summer garden for what it brings, but it feels so transitory. Interestingly, I don’t pine for my winter garden and I never feel like I will always be in my summer garden, with no escape.
The thing is both gardens are essential to a balanced and healthy life. Each garden has its own beauty and its own power. Moving comfortably between them, as they come in and out of season, enjoying what each of them has to bring to me, embracing their particular energies and the unique creative and inspiring moments they each provide will mean a more content and creative life.
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24 July – IV access becomes a nightmare
After so many months of weekly blood tests then chemotherapy the next day, my tolerance for IV access suddenly reaches zero. A couple of ‘bad’ experiences then watching another patient go through four attempts at a catheter and I am squirming in my chemo chair week after week…
Having had a full axillary clearance (all my lymph glands removed) on my right side due to the breast cancer, I have the added difficulty of only being able to have IV in my left arm – and to top it off, I’m left handed. My concern for the veins on my left arm, and the possibility of permanent damage, has been gradually but surely increasing.
I knew about alternative ways for nurses to gain regular access through a friend of mine who has also experienced cancer. She had a PICC line for her first set of chemo treatments, but had no end of trouble with it. It blocked regularly and had to be flushed so often that when confronted with chemo again, she decided against having any permanent access.
Perhaps knowing about her experience was what stopped me from considering something like that. I honestly can’t remember if I was given that option early on, but now, just into my fifth cycle, with my veins cringing each week and catheter insertion becoming more and more of an issue, I decide to get a port implanted.
It is a day surgery procedure, during which a small cylinder with a penetrable cover is placed under the skin on my chest. From that a catheter is directed into the main vein into my heart. All this is under my skin and once the insertion wounds heal, will provide trouble-free access to my vein for blood tests and chemo.
The day surgery is not pleasant. I am awake but sedated for the whole procedure. The week following plunges me back into pain and misery. I feel like I have been punched in the chest. I am convinced I can feel the catheter where it enters my vein…
But knowing that for my next treatment my oncology nurse will be able to take blood for my blood test and then administer my chemo without having to wrangle for a vein is a massive relief. The veins in my left arm will be able to rest and recover. I will finish my treatments using the port.
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2 July 2017 – The middle of it all
Receiving my life-giving chemicals…
Going back to chemotherapy last week was a challenge, to say the least. The initial delight of being greeted like an old friend and sharing my ‘good news’ about the results of the previous chemo treatments and the success of my surgery with the chemo nurses, gave way to an overwhelming sense of exhaustion as the next 12 weeks of treatment loomed in my head.
I think about our project (house build) and remember a time when, having just completed rendering and fitting out the shedudio to be able to move in, I realised the enormity of what we had taken on. Yes, I could reflect on what we had achieved (and moving into the shedudio was indeed a milestone), but larger, and more daunting than ever, was knowing now just how much more work there was to realise the whole of the dream.
Just in this way, I realise the weeks of treatment now laying themselves out ahead of me before I can get to the ‘end’ of this process and start my life again.
I am going to call this ‘halfway horror’ – the moment at which, having got a feel for how big something is because you are well underway, all you can think about is how far away the end seems to be…
I might need to write a book about this… if you are reading more of my pages and blog posts, you will be as aware as I am that this is a somewhat recurrent theme of mine…
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20 June 2017 – Recovery
Seriously look like a cancer patient now – no eyebrows!
Through the drug-induced haze, the fug of overwhelming pain, and the buzz of medical equipment and bustling nurses, the magic words reach me – ‘Your surgery is over, you are in recovery’. One day in ICU, then onto a ward to begin my six weeks of healing.
I have been terrified about this surgery. One part of my mind knew it was essential to staying alive, the other part wrangled with the enormity of having my belly cut open, from sternum to pubis, like a gutted fish. My main terror was what the surgeon would find, what she would remove, and what she might not be able to remove…
I wait only a day or so to find out that all is well. As good as she could have hoped. She has had to remove only what we planned, and is confident about how well it has gone. The primary cancer was fallopian tube cancer. It had spread to my ovaries, and managed to inveigle itself throughout my omentum and abdominal cavity. But all visible cancers are now gone. And the best part about it is that the chemo has done its job brilliantly, removing most of the cancer and thus reducing what the surgeon had to deal with. My oncologist is also very happy with the outcome.
Five weeks on, I am still on painkillers and struggling with whether what I am experiencing is ‘normal’. Each time I ask a medical team member whether my pain levels are ‘okay’, I am gently reminded that I ‘have had major surgery’. I am also told that everyone is different; people tolerate pain differently and people heal at different rates, i.e. yes, pretty much everything I am experiencing is ‘normal’ for some people, and thus ‘normal’ for me.
Lessons for me
Don’t underestimate the impact of surgery, any surgery – if the surgeon says six weeks recovery, she probably means a minimum of six weeks, but more likely eight or ten.
Keep asking questions – if you are concerned about what you are experiencing, ask your doctor as many times as required to make sure you understand and get the reassurance you need.
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6 March 2017 – My army of warriors
Taxol the dragon
Three treatments in and I have a face for one of my chemotherapy drugs – Taxol the dragon.
Each cycle starts with two chemicals, Carboplatin and Paclitaxel, then weeks two and three are ‘Taxel only’. My dragon is named after the second of these drugs, Taxol.
Some time ago, Richard and I talked about making or shaping a gargoyle from the render on one corner of our house. A shaped ‘monster’ of some description to stand guard over the entrance and ward off evil spirits. Of course, this is another creative project that has fallen by the wayside in our desperate efforts to just ‘get to occupancy’.
So, for my birthday this year, Richard sourced a ready-made ‘gargoyle’. A magnificent, handmade terracotta dragon who will take pride of place at our front entrance. Of course, the metaphor extends to my health and we name him Taxol.
When I was first confronted with undergoing chemotherapy, I was deeply concerned about the impact of ‘all those foreign chemicals’ being pumped into my body and the ‘damage’ they might do. We have tried to live a healthy life; choosing organic foods when we can, selecting natural materials for our house build, and low-toxic paints and resources where possible. Yet here I was choosing to pump chemicals into my veins…
I needed a new way to think about this, and I needed it fast. From diagnosis to options was only two days for me, then a further three days to start the first treatment. Perhaps this speedy approach was good, I really didn’t have time to think it through and process an aversion; like I say, the cancer bus stopped at my door and I just had no option but to get on board.
Using guided meditation, talking to my counsellor, and employing some mindful self-talk, I have been able to reframe those ‘toxic chemicals’ as my ‘elixirs of life’. I visualise millions of tiny dragon warriors, springing to life in my veins, seeking out and destroying cancer cells so that my body can eliminate the dead cells.
I need this to work. I need it to work for my mental health – to be able to go through it each week until sometime in September. And I need it to work for my physical health – to reduce the cancer for the surgery to be able to go ahead and to keep me alive.
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16 February 2017 – My Valentine’s Day
So, he agreed to going bald with me – meet the nude nuts!
Well they say love conquers all, so I am hoping in a big way that this will prove true for me.
I spent Valentine’s Day this year in the Day Oncology ward at Epworth Eastern. This is my second cancer diagnosis and is bigger and scarier than my first encounter with this insidious disease.
Musing on my situation with a friend who is now in remission from breast cancer, we compared notes on the sense of urgency and inevitability that comes with a cancer diagnosis – when the cancer bus pulls in to your stop, you just have to get on board.
My first cancer diagnosis (breast cancer) was around the time we were developing our property plans. My cancer was caught early; it was small, low grade, and relatively easily dealt with. Surgery and radiation treatment took about six months. Then, aside from annual check-ups, I was able to put it all behind me, return to full time work and get on with my life. We got our plans through council and embarked on our build; feeling extremely lucky to have got through so easily, and even more committed to creating a place for others to take time out to regenerate, recover, renew.
That was nine years ago. We have been living on the property (in the shedudio with a temporary kitchen/bathroom) for five years while we build the main house, inch by inch, handful by handful, as income and energy permits. It is agonisingly close but we still cannot move in to the main house.
In January this year, I took eight weeks leave to put in one more big push with Richard to get all the interior rendering completed and be able to finish the fit out to move in a little later this year.
In February this year, less than two weeks in to my leave, I received my second cancer diagnosis (one month shy of being ‘cancer free’ for 10 years). This was not a secondary from my breast cancer. This was an entirely different cancer; not caught so early and not so easily dealt with. It was uncertain as to whether it was primary peritoneal cancer, or the primary cancer was a gynaecological one.
So, chemotherapy – I will undergo three cycles and then be assessed for surgery. I will then embark on three more months of chemotherapy. That will take care of the next eight months, and most of this year…
It seems the vision we were attempting to realise, of providing a nurturing, regenerative haven for others, is now more than ever essential for us.
Moving in to the main house, completing our guest wing and developing our garden have never been more important. Nor have they seemed so unattainable. Health and finances have meant our build has ground almost to a halt. Even though Richard could continue with completing things we already have the materials for, my health has had to become our focus and there is, after all, only one of him.
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