Brain Tumour – the Journey Begins
... the journey begins
There is no guide book for surviving a brain tumour. I have no idea how long it might take me to get back to a normal life, if there is one. My speech is still sub optimal, I sound as though I’ve had too much to drink, and feel as though I have a perpetual hangover. I risk falling over and banging my head unless I walk slowly and deliberately. Learning to walk again is just one of the skills that I’m having to hone, among other skills, such as going to the toilet, showering, eating, making a cup of tea, getting dressed.
What started out as vertigo, dizziness, loss of balance, slurring of speech and chronic insomnia, ended up being 15 hour brain surgery to remove the tumour. I owe my wife everything for being with me on this journey, she has taken everything square on, all the changes that needed to be made, she needs to be recognised, honoured, for being unflinching, resolute in taking care of me.
It was on that day in late June, when our surgeon gave us the news, that Katrina said “our life has changed”. From that point, preparing for surgery, to now, our lives have taken on a new meaning, everything is viewed through the prism of survival for a kind of life that is completely unknowable. Nothing seems real, in fact most things seem surreal, in the truest sense of the word, where almost everything else seems irrelevant or unimportant, when of course, it’s not.
So, here follows a chronology of my journey.
I called my G.P., he had told me to let him know if I was still experiencing vertigo. I told him that I still had it, that I was still feeling dizzy and that I was at my wits end. He suggested a CT scan – “It probably won’t show up anything” were his exact words. Having said that, his perpetually enquiring medical mind led him to the point where he recognised the steps needed to be taken. He was watching and taking care of every step of this journey.
I sat in the foyer of that very fine hospital, the Mater, awaiting the film of a CT scan that I had just had, to take back to show my G.P. when a radiologist, a very nice lady, came out to see me. She asked me – “are you Stephen Newman.” I replied in the affirmative. She then motioned for me to go with her to a private room. I knew, straight away I knew, that something indeed was wrong. She told me that the CT scan that they had just done had shown up a Petroclival Meningioma. I recall being impressed that she had been able to diagnose so accurately the type of tumour, something I would only later learn to appreciate. Within half an hour of that scan, my G.P had arranged an appointment with a neurosurgeon. The radiologist had called him to suggest that action should probably be taken and soon. An MRI a few days later confirmed the presence of the tumour and provided a certain clarity.
We met our surgeon, Dr Jonathan Curtis, who confirmed the need for surgery. He booked surgery for the 21st July and then, after taking some particulars about my history and my family medical history, proceeded to tell me about the risks associated with the procedure, that there was a reasonable chance that I’d have a stroke, the risks involved with the surgery itself, that the tumour was in a “bad spot,” abutting the brain stem, that there were arteries that the tumour had “invaded”, attached itself to, that had to be liberated if I was to have any chance of recovery.
An angiogram, under general anaesthetic, to map my brain, in preparation for surgery. They were leaving nothing to chance.
My final meeting with our surgeon prior to the operation. He took me through the procedure, discussed the result of the angiogram, the profile of the tumour, he told me that things looked positive, that he should be able to get most of the tumour, that whilst surgery was still risky, that he was confident.
My wife made the observation: “We had the briefing with the surgeon today (updating us on last week’s procedures). Quite an overwhelming appointment – we knew already about the pressure that the tumour was placing on the brain stem, but last week’s procedures have found that it is affecting 3 major arteries, and confirming the cranial nerves affected. On a positive note, Dr Curtis again commented how ‘amazing’ Steve was cognitively considering … He also said that if it was left another month or so, that he wouldn’t be able to walk at all.
Yes! It is hard to believe. I still can’t quite get my head around the fact that he is REALLY sick. It’s been hard to watch – he uses so much energy on our morning walks – but he wants to keep doing them, and pushing himself. His symptoms are steady, but can be unsettling. But he still LOOKS okay!”
I admiitted myself into hospital, to prepare for the surgery the following day. They wanted to do another MRI prior to the operation, to provide an up to date scan and to map my head for surgery. I felt at peace the night before, Dr Curtis paid me a visit in the evening, to come and say hello and tell me that he prays and asks for wisdom before each operation he does. He told me he acknowledges the fragility of life, a comment that strangely didn’t effect me as it may have in the past. I had my own God moment, one of going on a journey and that things would be okay, even though it held no guarantees. I accepted the remark. I also somehow realised that Dr Curtis, with that one remark, was not only a skilled surgeon but a human being of great humility.
The day of surgery. I woke up at 5 a.m, Katrina came in at about 5.30 to see me. I had a shower and sat on the bed, readying myself. The nurse came to make sure I was prepared, I was sitting in my hospital gown, all clean and ready. Wheeled into the room where the anaesthetist was waiting for me, we chatted about bike riding. He told me where he goes to cycle and asked me what bike I had. I don’t remember anything after that moment. I never saw Dr Curtis. Twenty four hours later I would wake up in ICU, from heavy sedation following fifteen hour surgery, having had the tumour taken out of my head.
I awoke from surgery feeling nothing on the left side of my body, my left arm and leg were lifeless, a reflection of the trauma that my brain had endured. But I was alive, and for that I was grateful. I had passed the first milestone – that of opening my eyes following the operation. I was brought out of sedation the morning following surgery, I hadn’t had a stroke, a risk going into the surgery, so at least I had emerged relatively unscathed.
Katrina was there, waiting for me, telling me about the Tour De France.The good news was that the 3 major arteries and cranial nerves that the tumour was traversing were intact. For the next few days my existence consisted of ICU examinations and conclusions about where I was at medically. I had a few visitors during the initial few days, some of them I don’t remember. I was completely at the mercy of hospital staff, my brain felt as though it had had concrete poured into it. I was a mess of tubes and scar tissue and at that point any thoughts of a full recovery dwelt in fantasy. Everything seemed too far off. In contrast, Katrina was optimistic that I’d be on the road to recovery within days.
According to Katrina’s account: “He’s been having regular CT scans, and yesterday’s showed a shadow. Now that the swelling has gone down, there appears to be trauma to the peduncle (part of the stem), he may also have had a minor stroke since.” Katrina met with the surgeon, neuro registrar, head of ICU and another ICU doctor. They didn’t provide a definite on this – daily monitoring was the official response.
Once I moved from ICU into the ward I started on therapy to try and get me moving again, to get my leg to move. I couldn’t talk either, there was no output, it was too much like hard work to utter a word.
In time, three weeks of recovery at North Shore, learning to eat, thinking about walking and talking, turned into a further five weeks at Graythwaite Rehabilitation Hospital, where the goal of leaving hospital would awaken my body and mind. It took daily physio, speech therapy, occupational therapy and resolve to get to a point of being able to come home. Standing on my own was a milestone, walking along a corridor a major event, dressing myself something to be celebrated.
Slipping over and cracking my head added to the concern. It was thought I’d done damage that didn’t bear thinking about. I was ok but the fallout made everybody a little on-edge. People fall over in hospitals, it’s what happens.
Since leaving hospital I have been able to walk but I’ve been unsteady on my feet, I can carry on a conversation but I sound laboured, I cannot use my left hand, my bowel movements require a swiftness and precision that shouldn’t require that much thought. My head is full of scaffolding, as much a realisation that I’m fortunate to be alive as a determination to get better.
I still can’t function as a normal human being, every aspect of my life is in recovery mode but I am grateful that I’ve been given the freedom to do just that, recover. Most of all, I’m grateful to my wife, without whom I’d be a train without a station.
There are so many people with so many stories like mine. There are so many people who have died from brain tumours, yet I’m still alive. Though I do wonder when I’m going to stop feeling like this. The journey is by no means over, in fact, it’s just begun, it has no end date. I will forever live with this “ thing” on my brain. This tumour that has tried to claim me.