PANDORA’S BOX – KEEPING THE LID ON!

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 19^th 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!