This post follows on from Navigating the Maze – a complicated chain of medical appointments that eventually led to cataract surgery.
With the date finally confirmed for my cataract surgery, the saga was almost over.
I contacted my daughter to make sure she was able to drive me to have the cataract surgery done. When asked where it was being done, I replied that it was at Christchurch Women’s Hospital. This led to lively discussion about the correctness of having a “Women’s” hospital. Did they do men’s eyes there too? Should it not be gender-neutral, or non-specific, or whatever the correct terminology is now?
When she said she was able to drive me in, I phoned the hospital to confirm my appointments. It was pointed out that I had another appointment in place for Tuesday 2nd March. What??
On checking, I found that I did have a record of this. It wasn’t eye related but for my six monthly Ocrelizumab infusion. This wasn’t a problem in itself but, in my obsession with eye issues, I had forgotten to get the pre-infusion blood test that was needed. I hastily made an appointment with my GP to have the blood tests done.
On 2nd March I fronted up at Christchurch Hospital for my infusion. My last infusion, six months ago, saw me spending a full day in a rather tired room off the Oncology Department in the Parkside Wing at Christchurch Hospital. Now my Ocrelizumab dose was a subcutaneous injection — and it took ten minutes.
The subcutaneous version has now replaced the long infusion I used to have in the old Medical Day Unit. It’s administered in the Ambulatory Care Unit — which, I have to admit, sounded faintly ominous, as though I might be taken away in a wheelchair to somewhere far more serious. I needn’t have worried. The new unit was quieter, more fit for purpose, and far less draining for everyone involved.
My involvement in supporting the submission to Pharmac to have the subcutaneous version of ocrelizumab approved and seeing it in practice now felt quietly significant. The nurses were genuinely delighted — the new process (and location) saved them time, space and energy, and was so much better for patients like me.
The following day I had another appointment. This time for a breast screen. I usually go to the facility at Wigram but for some reason things had changed and this one was at St Georges Hospital on Papanui Road. Given that I wasn’t a hundred percent sure where to go, I left Diamond Harbour two hours before my appointment. It was lucky I did! Not only did my GPS take me on a route that required me to make right hand turns onto virtually impossible roads, but the traffic was also outrageous, the drivers rude and arrogant, the parking confusing and with no disability parks as far as I could see (maybe it was my eyes??). I was fifteen minutes late for my appointment after a journey that really should’ve taken no more than fifty minutes tops. Driving out of St Georges was a nightmare. By this time the nearby schools had come out and there were roadworks, road cones and angry people everywhere.
I ended up driving through Merivale, Fendalton and Riccarton feeling mildly nauseous. I used to live in this area and it did not hold happy memories for me. I almost felt like I had PTSD. I literally couldn’t wait to get back over the hill to my sanctuary in Diamond Harbour.
The following day I had my pre-surgery consultation which marked the end of any appointments until Tuesday 10th March when the cataract surgery would be done. I literally could not wait.
I can’t deny that the past few months have been hell — and it hasn’t all been down to the eye problem. Although most of these appointments were for the betterment of my health, I feel utterly exhausted by it all.
March is Multiple Sclerosis Awareness Month and there are a lot of memes and posts doing the rounds about MS, along with the recent release of Christina Applegate’s memoir You with the Sad Eyes, in which she describes being virtually bedridden due to the disease. I’m now about halfway through the book and, although I feel a long way from being bedridden myself, I recognise quite a lot of what she describes — although obviously not the parts about being a Hollywood star!
It’s a reminder of how differently we all experience this disease. I’m just over ten years older than her and was diagnosed nearly ten years ago myself (though I’d had symptoms for about five years before that). I often think how fortunate I was that my kids were already grown when this came along because I just don’t know how I would have coped otherwise. I live with chronic pain and I do struggle at times — particularly with situations like I’ve just described, but it rarely confines me to bed. And I live in a country where, for all the shortcomings in the health system, things have ultimately worked out in the end. I receive a disease-modifying treatment every six months that appears to be working — and it doesn’t require a movie star salary because it’s fully funded. For that I know I’m incredibly lucky.
***
The day of the cataract surgery began at 10:45 when a friend collected me from my home in Diamond Harbour and drove me down to the ferry. I caught the 11:00 a.m. sailing to Lyttelton, where my daughter met me on the other side. We had time for a quick coffee before heading across town to Christchurch Women’s Hospital.
My daughter had had a fairly appalling twelve hours prior to this. During the night the male members of her household — her partner and her two-year-old son — had both come down with gastroenteritis, which seems to be doing the rounds at the moment. I listened with a certain amount of sympathy as she described the various symptoms, most of which involved what she tactfully referred to as “going at both ends.” I winced at the details, silently grateful that whatever plague had swept through their household had bypassed both of us. With MS incontinence already a fact of life, gastroenteritis is something I would rather not contemplate.
At the hospital I went through the usual admission formalities before being shown to a cubicle containing a bed and a very comfortable armchair. I installed myself in the chair allowing my daughter to lie on the bed for a much needed rest while we settled in to wait. There was reading, a little eating, and a surprising amount of dozing. I suspect my daughter appreciated the opportunity for a rest after the previous night’s domestic drama.
At intervals a nurse appeared to administer those familiar dilating eye drops. By the time the afternoon rolled around I felt as though I had been marinating in them for several hours.
Finally, at about four o’clock, I was wheeled through to theatre. More drops followed, along with injections that gradually numbed the eye completely. It was a very peculiar sensation — or rather, the complete absence of sensation — especially when one can see various extremely pointy instruments being moved about in alarming proximity to an eye that appears to have lost all interest in self-preservation.
The procedure itself seemed to take a very long time, although I’m told it was probably no more than about thirty minutes. Eventually my eye was covered with gauze and firmly taped over, which signalled that it was all finished. I can’t say I enjoyed the experience, but I was immensely relieved that after months of appointments, confusion and waiting, the surgery was finally done. I was wheeled back to my cubicle and reunited with my daughter, where we waited while I ate something, had my observations checked, and prepared for discharge. What followed was another lengthy wait while the nurse completed the paperwork.
My daughter, who had previously been quite content to lounge on the bed, eventually began to wonder aloud why it was taking so long. She joked that perhaps there was a problem with the printer. We both laughed, assuming this was unlikely and that the nurses were simply busy and overworked.
It turned out it was, in fact, a printer problem.
We finally left the hospital at around 6:30 p.m. My six-hour hospital ordeal was over, and my daughter drove me back over the hill to Diamond Harbour.
The following morning, after a surprisingly good night’s sleep, I removed the dressing from my eye. It was still too early to know what difference the surgery would make. The pupil took quite some time to return to its normal size and the eye itself looked impressively bloodshot. It also had a slightly strange flickering sensation and a mild bruised feeling, although not enough to require pain relief.
At this stage, I’m reserving judgement. But after everything that has happened over the past eight months, it already feels like progress.
For the first three days after the surgery I wasn’t allowed to drive, which meant staying close to home and taking things quietly. Today was the first day I was officially allowed back on the road, so I met a few friends for coffee.
Looking around our local café, I realised that a lot had changed. The slightly woolly-headed feeling that had been hanging around for months had eased. No dizziness, no strange sense of disorientation — just the rather pleasant feeling of being properly present again.
After everything that had gone before — the appointments, the forms, the waiting rooms and the laser treatments for a “minor” tear — sitting in a café in Diamond Harbour and feeling normal again seemed like a small but very welcome victory.
This concludes the three-part series:
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