Thursday 1 May 2014 – from handwritten journal
Today we are travelling from Adelaide to Alice after I had the cerebral angiogram yesterday. Up early, can’t shower due to the dressing and still moving a bit slowly due to medications and tenderness at the puncture site (right hand side groin). I am nearly done packing when I feel giddy and a severe headache quickly sets in. I lie down as Jason throws the last few things in my case. We look over the ‘what to expect’ details given to us at the hospital and see that it is common after this procedure to get strong headaches that are only relieved by lying down – awesome.
As we wait for the cab, I feel as though I could pass out so I lean against the wall at the top of the entrance-way stairs whilst Jason braves the cold wind on the street. Just as I concede and ask Jase if he minds if I go and sit down, the taxi arrives.
I am thankful to have Jason with me as he handles the taxi, payment and navigation once we arrive at the airport. He gets us checked in. I am present but non-contributing as I really do not feel well. Thankfully again due to Jason being with me, we escape the overly bright, deafening airport into the relative quiet of the Qantas lounge. I am unable to eat anything despite Jason’s attempts to find something enticing for me.
I have the window seat on the plane and Jase has the isle (due to his ‘status’ we have an empty seat between us) and I’ve never been happier for all his work travel. He gets me a pillow and I rest my aching head against it. I select some relaxation type music to help block out the noise of the aircraft and its occupants and settle the headphones in place. I don’t recall taking off and only stirred a couple of times throughout the two hour flight. Once I figured out how to keep the seatbelt from digging into the injection site at my groin, I am mostly comfortable. I wake during the flight and try to get warmer by pulling my jacket over me. When I next stir, there is a blanket covering me and feeling cozy I am quickly asleep again.
We get home around 12.30 and Jason makes us a quick lunch of which I can only eat half, and sets off for work as he has an important meeting to attend.
I potter around the house for a while before going to bed. I start off trying to read but my head is unwilling to let me concentrate. I then decide to do my ‘body scan’ meditation.
I am laying in bed about half way through the meditation when my phone rings. No caller ID, I answer it suspecting who is on the other end. It’s my Neurosurgeon, Margaurite Harding, her distinctive accent leaving no room for mistake. I get up and make my way to the kitchen, grabbing a note pad and pen as I go. After pleasantries, she asks how I went with the angiogram and I say fine, she chuckles briefly and I am sure that Rebecca, the Radiologist has mentioned how nervous I was.
She checks if I am back in Alice and then we move onto the reason for the call. Both Margaurite and Rebecca have reviewed the films from the angiogram and they agree that they do not like the way it looks. It is “nasty looking”, very irregular and unfortunately these are the type of aneurysms more likely to bleed. It is too small for coiling meaning that I should have it clipped. She pauses and with kindness says, “I know this is not what you were hoping for.” I stop moving, my stomach drops and I feel…disappointment. Not the disappointment you feel when you’ve missed a movie you wanted to see at the cinema or when you don’t get a job interview, but a deeply felt disappointment at how something out of my control has again set my life on a path of difficulty and pain. Disappointment that what Jason just supported me through is not the worst he will go through this year and disappointment that despite wishing so hard for a good low risk outcome, I now have to face something terrifying and potentially life threatening. This reflection lasts all of a moment and I pull my focus back to Margaurite.
I clarify that her advice is to have surgery to clip it and we then go through the details, including a graphic description of the operation. the main risks, how long I will likely be in hospital and what restrictions I will have post-operatively. For the description see post entitled brain-surgery-what-will-be-done on 22/5/14.
She is very thorough, saying a number of times, she would prefer to have this conversation face-to-face. I ask a few questions, particularly relating to the risk of stroke during the surgery and explain that I want to set some advance directives in place such as ‘do not resuscitate’ if I suffer catastrophic injury during the op or following. I explain that I do not want my husband being in the position of having to decide to turn off my life support. Margaurite says she is confident nothing like that will occur but that she understands my desire to do this. I ask if she is prepared to work with me on this and she says its something we can discuss face-to-face and that she will ensure it is noted in my file.
I ask about timing and she tells me that with the current schedule, I could be admitted in about a month’s time. We will need a couple of days before the operation to talk through everything again, and sign the consent forms and hospital admissions paperwork.
She tells me that if I have any further questions, which she assures me I will, to just call the administration staff and let them know and she will call me again. We say goodbye and I hang up. Standing alone at the kitchen bench, I take a long slow breath to calm myself. I look around without focus. Then a thought blazes across my mind, shocking me out of my stupor, How am I going to tell Jason or my mum? My shock and disappointment are replaced with horror at this thought. I feel acutely aware that I am (my health) once again throwing our lives into turmoil, causing pain and worry for those I love and I am both angry and devastated.
We have literally only just returned home after me having a test that scared me and now this! I feel crappy physically as my body recovers from the stress leading up to the angiogram and the pounding headache brought on by the procedure.
There were three possible outcomes of the test.
Door No: 1 – The aneurysm has grown but its still too small to worry about and we just keep reviewing it.
Door No: 2 – It has grown and it needs to be coiled, invasive but not surgery.
Door No: 3 – It is at risk of bleeding, isn’t suitable for coiling and surgery is the only option.
I never thought it would be option three. I always go into my tests with optimism as my companion (even when scared). This can’t be happening, maybe it’s not really that bad. As my mind starts spiralling into denial, I hear Dr Hardings words again as she described the aneurysm. I remind myself of the trust I have in her and in that moment, have some peace knowing that brain surgery to clip the damn thing is the only option.
There is some solace in certainty. No hemming and hawing about whether I am making the right decision. If I don’t have the surgery, the aneurysm in all likelihood will rupture and I will suffer irreversible, catastrophic brain damage or die. I live in Alice Springs, if it bleeds here, I am at least three hours away from the nearest Neurosurgeon, making the chances of surviving slim. As a friend of mine said when we were discussing the risks of the angiogram and other procedures, “Better to stroke out on the operating table in hospital than in the Todd Mall.” She is right.
I realise I am really not feeling well and return to the comfort of my bed and make good use of my guided meditations. As I reflect, I feel calmer, resolved and I decide not to tell Jason right away. I have almost picked up the phone already but that would be unfair, to tell him whilst he’s at work. Then I decide that he deserves a night off from thinking about all this, that actually we both deserve some time off. I resolve not to tell him that night and when he gets home we enjoy a quiet night, watching some tele on the couch together, enjoying the lull between test and results. It is a good time because the stress of the test is over and there is nothing to do, no decisions to make until the results are in.
Jason works again on Friday and I spend the day doing house work. The previous day’s news seems distant and I feel strangely calm. Friday night arrives and I again think that Jason deserves a good end of the week-relaxing evening, so I don’t tell him I have spoken with the surgeon. Saturday morning dawns and I realise, as I think how I don’t want to ruin Jason’s weekend, I am avoiding the issue. This is not like me and as I start getting things ready for a pancake breakfast I realise that by not telling anyone, I am avoiding facing the truth.
I have been in a quiet little bubble where I haven’t had to discuss the issue, explore options, console anyone or make plans. I have been blissfully inactive. We cook breakfast together which is delightful and after we are satiated, I join Jason on the couch and tell him I have heard from the surgeon. Talking about it suddenly makes it very real and we spend that day, dancing with it, having short discussions as one or the other thinks of a question or some salient point. It is painful to explore and face and I realise I am frightened and more so, sad for what Jason will have to go through watching and supporting me. We are both sad at the divergence in our lives again. We mourn for the fun we will miss this year, camping trips, motorbike rides and just being happy and healthy.
We know what recovery looks like and as each of us stumbles through our fears and grapple with this news, we begin mapping the practical. I am astounded at Jason’s commitment to me and the way in which, I worry for him having to watch me go through this and how he is sad for me, knowing how painful and challenging this will be. I think this is part of what keeps us together and strong, great love and genuine compassion for the other. In the midst of great sadness and fear, I am also filled with gratitude.