FOLLOWING ON FROM DEVILISH DRUGS.
ANOTHER BATTLE IN THE WAR
After I left hospital my strength began to return, but the fluid around my heart did not clear as hoped. By April it had actually increased slightly, and surgery became the only option.
My surgeon was amazing. You know that exhaustive paperwork you have to fill out before an operation? He sat with Rob and I for nearly an hour and did all the writing up as I answered the endless questions as best I could. The reduction in stress was enormous. I found out later that he spends time every year doing surgery on a voluntary basis overseas.
As well as draining the fluid, it was decided that a ‘window’ should be created in the wall of my pericardia, allowing any future effusion to drain away harmlessly. Pretty clever eh? Excuse the gory photo, but it shows exactly what they do.
Keyhole surgery was ruled out, as the surgeon feared he might be dealing with a rather messy situation. Instead, a five centimetre incision was made under my left breast. I was warned that the post operative pain would be ‘severe’ as ribs have to be pushed aside etc. Oh my word, what an understatement. I woke to the disturbing sound of someone moaning in agony, only to realise it was me! Thank goodness for patient controlled pain relief, although I was trying to suck in far more than was available!
It is testament to my recuperative powers (and perhaps to Dr Bob’s regime of sustaining porridge) that by the following morning I was able to walk down the corridor to the bathroom, and that I asked if I could have some breakfast. The staff had to rush off to find some, joking that I was the first person recovering from such surgery to want any.
I was soon back on the wards, where my continuing chemotherapy treatment created a bit of drama. At one point I was moved into a shared room, and my companion noticed that staff were using special purple gloves when taking my blood or changing my dressing. They were also using a ‘hazardous chemical bin’ to dispose of swabs and bandages. This was to protect their own health. Physical contact with cyclophosphamide (Cytoxan) can have serious affects on healthy people, including infertility in women.
Although she was in no danger, my room-mate completely freaked out. Despite reassurances, she said she didn’t want to breathe the same air as me, and insisted on being moved. I could understand her reaction; she had just undergone surgery herself and was feeling very vulnerable A few days later we found ourselves side by side downstairs while waiting to have an ultrasound. She had calmed down and was full of apologies. ‘’I didn’t mean to make you feel like a leper’. she said. I told her not to worry, and that Rob and I were delighted to have our hospital ‘office’ to ourselves again. We had a good laugh about it.
When the tubes in my chest were about to be removed it was all too much for Rob and he fled the scene. I was alarmed myself when I saw how thick the drains were, and even more so when it was explained that I would be awake, so that I could breathe in or out at the vital moments. All I can say is thank heavens for the deft hands of medical staff. After a rehearsal to ensure I would not let the side down, the procedure was carried out by two nurses in several well orchestrated manoeuvres. A couple of wide-eyed students looked on, rewarding the three of us with a little round of applause. It was a creepy feeling as the tubes slid out, but not really painful.
Once released from hospital, my recovery from surgery continued uneventfully, although no-one had warned me about the awful nerve pain over a large area around the incision. I pottered about in the garden and communed with the birds.
Regular blood tests showed no sign of active CSS and I began to taper my medication. By the time my face was becoming puffy from Prednisone I was already on a relatively low dose and it slowly returned to normal. I felt a bit sad really, because it had ‘ironed out’ a few wrinkles and people had been telling me how well I looked.
In March 2013 Rob and I flew to the UK for my book launch. The long flight from Australia is always difficult, but trying to sleep while revved up on Prednisone plus a debut author’s nervous energy was well nigh impossible. Recovering from jet-lag was also more challenging, but I was extremely thankful to be fit enough to make the trip.
As luck would have it, a heavy and unseasonal snowfall made Great Malvern’s steep streets virtually impassable, even for pedestrians. We were beginning to wish we had organized the event at a London pub instead of at one of Malvern’s historic hotels. In part, my true-crime story revealed the unpleasant character of Dr James Marsden, one of the town’s 19th century water-cure doctors. Patients undergoing treatment were regularly wrapped in wet sheets and we joked that Dr Marsden had thrown one over the event in revenge. Fortunately, loyal friends and hardy locals braved the appalling weather and made it an occasion to remember.
How tempted I was to go back to the medical centre in Evesham where the nurse had berated me for running out of asthma puffers. I could have channeled Spike Milligan and said; ‘See, I told you I was ill!’
It may have taken me a long time to produce my first full length work, but I had made up for lost time by completing a second book during my recuperation. After a busy few months back home taming the garden and attending various author events, July saw us on another writing related flight to the UK . This time the launch was held in the riverside town of Marlow, where we’d owned a holiday home for many years. The book was inspired by Rob and I walking the Thames Path, long before CSS reared its nasty head.
Due to residual neuropathy (and advancing years!), long distance walking is no longer possible for me. It was therefore a delight to relive our journey through my writing and Rob’s wonderful photography. And maybe it was ‘Prednisone power’ that helped me overcome my fear of public speaking enough to share our love of the river with a sell-out crowd of friends, family and supportive Marlow residents. Among those present was a fellow ‘Churgie’ I had connected with via a wonderful on-line support group. I have since met and become friends with quite a few people who have the same condition, both in Australia and the UK. There is always that instant bond of understanding, such a precious thing.
The nearest person I know with this condition is Tony, who lives in Bathurst. When he is well enough this lovely man busks for a cancer charity, sometimes in my own Blue Mountains village.
But I digress; let’s get back to England. Admittedly local Mayor Suzanne Brown was far more eloquent and amsing at the launch than me. She had certainly dressed for the occasion too, complete with her chain of office. She told me she buys all her hats at charity shops (I followed her example later, when buying a Henley Regatta hat.)
AU REVOIR CSS!,
By mid 2013 I had ceased taking cyclophosphamide and in October 2013 I took my final, small dose of Prednisone. I was delighted, but also anxious, as so few people reach this point. The feeling was a bit like stepping onto the glass platform above the Grand Canyon, but my immunologist was confident I would do well. My own confidence increased when he told me that one of his patients remained in remission for fourteen years before experiencing a mild flare.
Of course, CSS has left some scars. I still have residual neuropathy in my toes. My upper arms have never regained their lost muscle tone, despite my love of gardening and wood splitting. I have also had a number of squamous cell skin cancers removed. It is likely that immuno-suppressants contributed to the cancers, along with too much Australian sunshine.
As I write this, my sense of smell and taste remain normal. and my garden is full of fragrant plants. I have a lot of ‘lost’ years to make up for, so I bring nature’s perfumes into the house at every opportunity..
I am still allergic to metabisulphite, but can enjoy a drink of wine if I take an antihistamine tablet first. A nightly treat of a good splosh of Baileys in hot milk causes no drama and must surely be good for my bones. Otherwise I eat a normal, balanced diet; well most of the time. My philosophy is that into every life a little junk food must fall. My odd episodes of ‘forgetting’ how to remain upright have never reoccurred. I can only assume they were a sinister sign of trouble that I stupidly failed to heed. Of course I live with the fear of flares. It is increasingly difficult to discriminate between the normal aches and pains associated with aging and some ghastly little CSS demon escaping from Pandora’s Box.
Throughout the writing of this account I have been acutely aware that (thus far) my CSS journey has been unusually smooth.. The neuropathy in my feet has not been associated with intractable nerve pain, as is so often the case. My heart goes out to those who face enormous challenges in dealing with the condition, or even of obtaining a definitive diagnosis. People too sick to work have the added burden of financial stress. as medications and treatment are costly. Naturally, my greatest wish is that a cure will be found, or at least that less toxic medications will be discovered. There have been positive advances since my own diagnosis.
In 2018 I reached five years in complete remission. My immunologist told me I need not make another appointment unless anything untoward should occur. What a milestone that was. I continue to have annual blood tests, and the lovely Dr Flood arranges an ultrasound on my heart every year.
Oddly enough, the over-achieving designer of this website completed her medical training during my recovery and is now my local G.P. She keeps an eagle eye on me, as does my darling ‘Doctor’ Bob.
Legend has it that when the beautiful Pandora so unwisely opened that box she released all the evils of the world. However, for sufferers of Churg Strauss Syndrome and every other incurable condition there is something worth remembering When she finally forced the lid shut, Pandora captured something hiding at the very bottom … the spirit of HOPE.
UPDATE – OCTOBER 2019 After a nasty bout of flu in August I was left with an irritating dry cough and extreme weariness. We were due to leave on a trip to Kakadu followed by a three day train journey from Darwin to Adelaide on the famous Ghan. I wasn’t about to miss that, so off I went …..a bit wobbly but not too bad.
Back home and still feeling very weary, I finally wandered up to see my GP. Off for chest x-rays, which were all clear, then blood tests. Oh damn, inflammation levels were sky high. Yes….my first flare!
My cheeky immunologist did an informal cognitive function test by asking me questions about British politics. Slightly unfair I thought, but better than counting backwards from 100 in 7s. Just as well I’m fascinated by BREXIT.
GET BACK IN YOUR BOX CSS!
The inflammation is being dampened down (and extinguished we hope) with a course of steroids plus the drug Methotrexate, which thankfully is not as harsh as Cytoxan. The main objective is to achieve remission as quickly and safely as possible, to prevent the disease sneaking back into my brain or heart.
This was a warning for me that I must not ignore symptoms after something like flu, even if they seem inconsequential. Thanks for reading such a saga. YAY……THE BLOOMIN’ END!