It was 2 long days before returning to Parkside to get the verdict from the Neurologist. Dad had called me back from his ski holiday where I had located him the week before, enjoying a round of Vin Chaud in Les Gets in the Alps when I had called. Mum and Dad were enjoying their ‘silver ski’ holiday package including guiding, excellent food, and pristine conditions that morning.
“Your mother is skiing marvellously” Dad had said. “Just like her old self”.
Thank goodness for that I thought, as I imagined that her surgeon would have been quite non-plussed if she’d jarred her knee replacement skiing carelessly over moguls. I had emailed Dad the scanned report from Dr Clifton, and it turns out that their group is made up of other retried medics, and of course a pre-eminent vascular surgeon is also in the party and he would confer with Dad pre dinner.
So when Dad called me back post Cornwall, it was not just his opinion, but the collective view of the ski party that he was returning.
“We’re all confident the MRI will confirm a body tumour - It won’t be an aneurysm – that’s too unlikely for a woman of your age.”
“Oh”, I said, “but Dr Clifton seems to lean towards an aneurysm?”
“No not at all” Dad had said. “Read the phrase again - the report is simply saying that he cannot exclude an anuerysm. That doesn’t mean it is, he’s just covering himself. A body tumour is still far more likely.”
“Ok, well, let’s see” I replied. Not wholly convinced.
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Thursday 7th February finally comes around; it is Alex’s birthday and the date of our deferred appointment with Dr Al Memar.
As we sit down, the charming Egyptian Hercule Poirot has returned:
“Mr Orme, I am pleased to share with you that your wife has a very large and beautiful brain, look at the image on this scan”.
I am put slightly more at ease by his positive opening tone, but essentially my fear boils down to two worse case scenarios:
(a) The MRI is inconclusive and the Neuro team determine that they cannot wait to do an angiogram to conclude, or
(b) An aneurysm is confirmed and the risk is such that they need to operate urgently.
If either of those scenarios plays out, I cannot see a good outcome for my 22 week bump. I’ve resolved that I can deal with anything else.
“Has the MRI confirmed what it is?” I ask
“Yes” He replied. The MRI shows that it is….
And in the same way that when I’m sitting in the main stand at Anfield, I chant ‘LIVERPOOL, LIVERPOOL over and over in my head at the exact same time that the away fans begin chanting ‘and it’s Arsernallll, Arsenal is it… I do this because I believe that if I don’t and I hear the name of the opposition, it will be bad luck and we will most likely lose the match. So as we sit in Al Memar’s room, I am uttering loudly in my head ‘Body tumour, Body tumour, BODY TUMOUR’, but his lips aren’t pursing for a B, instead he opens his mouth and clearly enunciates: ‘AN ANEURYSM’.
And my mouth went dry.
In my mind’s eye I see the Japanese report probabilities flash up like the final score on the display at the end of the match.
But Dr Al Memar is seizing the momentum and starts drawing a useful diagram of the carotid artery, with a balloon like shape branching off to the side of the inter cranial artery just above the fork.
“There is some good news”, Dr Al Memar is saying. “The aneurysm has a very wide neck and we believe it is patent (minimal / negligible clotting). He explains that this means that the risk of clotting building up in the balloon like shape and the aneurysm rupturing is currently very low, aside from the unpredictable effect of pregnancy hormones on the blood.” He continued:
“I have spent some time discussing your case with our team at St Georges, and we are all in agreement that we should wait until after you have had your baby. The best thing you can do is not to worry. You must focus and enjoy your baby first, and then we will arrange the angiogram and the operation”
The dialogue continues until we leave the room with a clear plan and feeling genuinely reassured. Dr Al Memar will call the Obstetrician and request I have a C Section to avoid the pressure of labour, I should take an aspirin every day to mitigate the chances of blood clotting, and we will arrange for the angiogram scan in 4 to 6 weeks after labour.
I call my Dad on the way home to let him absorb the details and then we head to the Duke’s Head on the river in Putney for a reflective Birthday lunch, inhaling some relative sighs of relief.
And for the first time in 3 weeks, I feel at peace, and sleep found me promptly after the 10 O Clock news that night.
Unfortunately our peace and sleep were shattered dramatically at 2.30 am when our room filled with flashing lights and a cacophony of sirens. 2 large fire engines, a large police van and an ambulance were first on the scene to try to control the smouldering flames of a house, 5 doors up on the left from our window. It had formally been a highly presentable 4 floor Victorian house, but the fireman would spend the next 4 hours battling to control the flames of a smouldering mass with two huge hose pipes. Alex was crouched up against the window like a small child watching Fireman Sam, providing me with sporadic updates until Barnaby joined us at 6am. The following day we would observe a scene from Silent Witness as white plastic suited characters would enter and leave the charred remains with their clipboards. One of Nick Clegg’s police guards who stands around the clock on the corner of our road, would confirm that the house had been gutted and a body had been found under suspicious circumstances.
As Alex had watched on, I lay there resigned to the fact that sleep would be hopeless, and tried to piece together how on earth 2 best friends could have the bizarre coincidence of discovering aneurysms in their cranial arteries in their 30’s. Dr Al Memar had described my aneurysm as ‘dissected’ with the prognosis that it was highly likely to be a result of a physical trauma to the neck in my past, akin to experiencing severe whiplash after a car crash. But I have never been in a car crash. So I challenged myself to think about whether it really could be just a coincidence or was there a physical incident that bound Lucy and I together. Could it have been the near fatal 12 to 15 foot wave that had crushed both of our backs and surf boards in the unforgiving surf at Puerto Escondido on Zictella Playa (translated as 'Beach of the dead') at the start of our Central American adventure in 1999.
As the scene got busier outside the window, I lay there recalling the feeling of my back snapping like a twig as I had given up with the struggle of finding the water’s surface for breath. When air bubbles did arrive, I had not even attempted to move my arms, but instead let the waves eventually beach me. With a sand- dimpled face, and a torn leash around my wrist I had found Lucy in a similar splayed position, holding her leash frayed hand to her back in similar distress. We had both been struck completely dumb with shock, and it was only after several rounds of medicinal Tequila that night, that our voice boxes had returned and we able to recount the experience.
Note the photo at the top was taken a few hours before our surf at Zicotella.
The weakness is this theory is that it was the middle of our spines (where I would later have a burst disc diagnosed on my only previous MRI) rather than our heads that had felt the impact of the wave’s power. So the only other link I can think of is the fact that we have both separately climbed high altitude peaks in our early thirties, being led on each altitude ascent far too quickly. For Lucy it was Kilimanjaro, and for me it was the lesser known peak of ‘Mardi Himal’ in the Himalayas. We both have described experiencing the ill effects of Hypoxia (oxygen shortage) on our descents and I have researched somewhere online that there is a higher prevalence of aneurysms in people who live at altitude.
But of course we will never know the cause!
Lucy King's Story
It was almost 2 years earlier in August 2011, when we received a very concerning email from Lucy’s mum - Bridget, explaining Lucy’s precarious situation in a Nairobi hospital. It would be 2 tortuous weeks later when Lucy was able to explain her horrific ordeal in person to Jo Priestley and myself when we went to visit her pre- Op in the ‘Hospital for Neurology and Neurosurgery’ in Queens Square. For Lucy the Queen’s Square hospital was the equivalent sanctuary as the Watergate Bay Hotel was to me. Despite the fact that she lay there on a busy ward, under the most inappropriate fluorescent lighting for a room full of people awaiting neurosurgery. No matter that detail, she was in London, England, home of the NHS and the best expertise in the world to address the terrifyingly urgent situation of a ruptured ‘post cerebral fusiform aneurysm’, and she had risked her life getting there.
After the neurological team in London had studied her scan after the angiogram, their feedback was that they had only seen a hemorrhage like that on a post mortem before, and as they prepared her for theatre, the Neuro Surgeon warned her that at best, she would probably lose her sight on her right hand side as a result of the operation.
The description of events that led to Lucy walking into a hospital in Nairobi partially sighted will always bring me out in goose bumps:
She had been studying and working with elephants in Kenya for several years, and at the time was the Chief Operating Officer for The Save the Elephants charity, spending most of her time in Samburu National Park. She described suffering an extraordinary migraine for 3 days before she raised the alarm for help. Her words were actually ‘A HEADACHE OF NOTE!”
On day 1, the headache was building like it had never done before, and on day 2 she was aware of losing peripheral vision on the right hand side of each eye. She was just about to put her hand up and seek help, when several shouting Kenyan rangers came running into camp, waving their arms in the air and shouting “poachers, poachers, come, come”.
Caught in migrainous confusion, unable to make a rational decision, Lucy King, as COO of Save the Elephants, didn’t feel she could put up her hand at that moment and complain of a headache. Instead she took the driving seat of her Land Rover and in convoy with her boss, she drove 6 rangers deep into the bush to discover the enormous corpse of ‘Khadija’ her beloved Matriarch Elephant and leader of the so called ‘Swahili’ group. Later they would go still deeper into the bush to find Khadija’s calf in the same predicament. With the noise of intense shouting, and faced with cameras in her own face, Lucy might have welcomed death at that moment too.
Instead, she somehow navigated back to camp without the benefit of her peripheral vision and with her splitting headache. The next morning she described her spine as ‘aching’ and her headache too severe to try to stand by herself. Clutching at her mobile phone she called her boss to say she needed to get to a Nairobi hospital that day and she needed help.
Dr Ian Douglas Hamilton has probably done more than anyone on this planet to save the plight of the African elephant, but on this particular morning his attention turned to getting his prodigy safely to Nairobi. He dispatched someone to get her dressed and upright, and arranged for the light airplane that had just arrived on the little airstrip at Samburu, to wait for Lucy and take her back to Nairobi. He was aware of another member of staff – Gemma, attending a hospital that day with symptoms of giardia. So he advised Lucy to head for that same hospital so that Gemma could be on hand.
Lucy remembers lying flat across 2 seats on the small aircraft shielding the light from her eyes. She called her boyfriend Pierre on arrival, incoherently attempting to explain that she needed him and naming the hospital that she was heading to. By fate, she recognised the cab driver at the airport, who would kindly return to the hospital later to drop off her luggage that she had neglected in the cab when she had arrived at the hospital.
Suitably concerned, Pierre, after struggling to understand her speech, had immediately caught a flight from Malindi. On arrival, he would locate Lucy lying in a ‘proper African ward’, full of women dying around her. He was horrified and quickly arranged for a private room, chasing the team for results of a CT scan, which would reveal a ‘large blob’ at the back of her skull. He called Lucy’s mum in Eastbourne, who raised the alarm with Lucy’s closest friends and family, and got herself to Nairobi the next day.
Whilst Nairobi was a better place to be than Samburu, they simply didn’t have the medical expertise in Kenya to properly diagnose or fix the problem, and it was determined that they had to get Lucy to either Cape Town or London urgently. Days would be lost when the MRI discs showed up in London blank, and the Nairobi hospital administrative office was then closed for 3 days. Somehow team Lucy would keep their nerve and push through every barrier that came their way, though at a frustrating African pace. Finally 2 weeks after walking into that hospital, Lucy was taking up 9 Kenyan Airways seats, strapped to a stretcher, with a Doctor and her mum accompanying her on the flight to London Heathrow. After advice from my Dad, Lucy’s sister Sarah had raised the necessary paperwork with Lucy’s UK registered GP, to enable a smooth transition from Heathrow and into the Neuro Hospital in Queens Square.
On tenter hooks, we received confirmation from Bridget that the operation appeared to have been successful, and that Lucy had confirmed that she could see when she came round. As will be the case with my operation, she needed to spend 24 to 48 hours in intensive care, lying perfectly still to enable things to set in place. In Lucy’s case, the ‘thing’ was a sort of super glue that had been injected intravenously into her groin and by a remarkable endovascular method had got to the back of her brain. It would set to seal the aneurysm, blocking out the artery entirely. Given the surprise news that Lucy had confirmed she could see, the doctors concluded that capillaries had grown around the artery to step in and perform the artery’s job to supply crucial oxygen and blood to that compartment of the brain.
After 24 hours in intensive care where she was woken hourly to be monitored, Lucy had her darkest post op moment: The nurses had raised the angle of the bed slightly towards the upright position and left the room. When Lucy opened her eyes, she realised with terror that she had lost her sight and hit the panic button. The medical team rushed back and lowered her once more which joyfully had the effect of bringing her vision back.
Lucy’s situation had been beyond traumatic and precarious, and she would need to take some time to recover at her mum’s flat in
Eastbourne before returning to Kenya after her heroic medical team gave her the all clear.
Present Day and Perspective
Yesterday was another beautiful summer’s day. In the morning I saw the midwife who confirmed that all was well, that Monty has a very strong heartbeat, and on prodding my tum she confirmed ‘this is no Tiddler’. At lunch time I got through to Lucy on the phone to play back my recollection of the facts of her story, and after the call I spent a glorious afternoon on the river bank in Richmond with Barnaby and friends. Before going to bed we found our new Cornish home that we have named ‘Wave Watch’ is now advertised on the Pure Cornwall website for rentals in July. We’ll feel even better when it is complete!
Back to lunch time, and Lucy answered her mobile on the second ring, having just arrived at a guest house on the edge of Tsavo National Park. She was tired after an 8 hour drive to her next field trip, but buzzing from her sister’s wedding last weekend on the shores of Lake Naivasha. She of course wished me luck for Monday, tuned into our timings, given we have already asked her to be God mother to our impending arrival.
Lucy’s insight from her experience has been incredibly useful to me after confirmation of my aneurysm, especially when she called me back from camp in February, providing much needed context to my google research:
“What decade was the research covering” She’d checked. I’d recalled it was 1987 to 1997.
“Brilliant” she had replied. Almost all the data you can find on line pre-dates 1997. That’s when they started to introduce the new endovascular procedures which tend to be safer and more successful than open surgery which is often deployed as a secondary measure. She had learned that in reality the survival probability is much higher than the data suggests, there just aren’t enough cases to bear that out statistically yet.
The perspective I have from Lucy’s story is not so much that she survived completely against the odds, but the way in which she has responded since the trauma:. As she recovered in her mum’s flat in Eastbourne, slowly improving her sight each day and rebuilding her confidence to go for walks outside again; she began to read large print, and started to write an abridged synopses of her PHD on ‘Elephants and Bees’to apply for a prestigious award. 2 months later after an MRI confirmed that the operation had indeed been successful, she also learned that day that she had won the UN prize for the best PHD thesis, the cheque and award for which she would need to collect in Norway later that year. It had been a good day for Dr King, and we found a link to her prize winning story on the home page of the BBC website. You can also see her smiling face on the current front cover of the Biology Journal.
Whilst grateful to all that England had given her, Lucy would return back to Kenya, fully acknowledging the place as her home, and moving into a wonderful house with Pierre and their dog on the outskirts of Nairobi. She still represents Save The Elephants today, but soon after returning she resigned from her role as COO recognising the position to be putting her health under too much stress. Instead she has turned her full focus to implementing the findings of her PHD - Essentially she helps farming communities across multiple countries in Africa to roll out win-win programmes to install bee hive fences employed to protect the farmer’s crops from elephant raids and at the same time providing farmers with the much needed extra income of honey production. (Her experiments had proved that the African honey bee is a natural deterrent to elephants). It is a brilliant model, and her charismatic presentations and evocative videos and media footage have propelled her to win every award she has entered across Europe since - funding her work and a rather comfortable upgraded Land Rover. If you are not already linked to Lucy, you should go to her website www.elephantsandbees to track her progress.
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My intention in writing this blog was not at all to solicit concern or sympathy, as I feel humbled by others who face far greater traumas in their lives. I just wanted to enjoy writing the story and I truly feel incredibly lucky:
I feel lucky because we conceived in a matter of weeks after first visiting the GP. I feel lucky because of the amazing cast of doctors, nurses and radiologists involved in my case, they have freakishly made the discovery of an aneurysm, doubtless years before it might have developed into a really dangerous situation like Lucy’s had. With the diagnosis confirmed, my delivery can be well managed and I’m in a great position to be fixed. I feel lucky that I have such a close family on hand to support me, including parents who can be both mum and dad, and doctors to advise. I feel lucky that I can always draw on amazing friends both old and new, and that both my husband and son are so happy natured. I also couldn’t be happier going forward,if a successful operation allows me to say goodbye to future migraines, as has been the case for Lucy.
Perspective also comes from feeling humbled by other people’s strength in their periods of sustained adversity: I can draw on my sister as a role model – she juggles being the most amazing mother to her 2 beautiful boys, with fortnightly treatments, and regular scans to deal with her terminal cancer. She is courageous, and so far, the success of her treatment and continued good health is in itself a remarkable story against the odds.
I am also particularly humbled by the strength showed by our great Dutch friends in Putney – The Trommels - who last year, arguably found themselves in the most traumatic situation that anyone could ever face. Just skimming the surface, here is my insight of Froukje and Bastiaan’s story in 2012. Alex and I like to refer to them as 'The Dutchies’:
The Dutchies Story
We had picked up their daughter Famke from nursery that day, (Famke is best friends with Barnaby having been adorable playmates since their birth 2 weeks apart in early 2010). When Famke woke up in our spare room, we had the great honour of telling her the wonderful news that she now had a little baby sister called Karlijn. But within hours of breaking the happy news, it was discovered that she had been born with a rare liver condition and Froukje and Karlijn would have to be transferred by ambulance from Kingston to Kings Hospital in Camberwell.
As long as I live, I will never forget my coming together with Froukje in an atrium on the ground floor of Kings Hospital one day later. Embracing in a hug, she let out the loudest and deepest whale of aching pain that I could ever imagine, it seemed to echo throughout the entire hospital building. I thought the window panes might crack and minutes later with her still trembling, I finally pushed her back to see her face and softly asked:
“Is she still with us?”
“Yes” Froukje confirmed “Just!
Please come to the ward and meet her”.
2 weeks later I would be looking on at the doorway of Bastiaan and Froukje’s tiny hospital bedroom along the corridor from the critical care unit. In the cramped space , sitting on each single bed either side of the room, were Bastiaan, Froukje, her mother, father, sister and brother, all of whom had flown over that morning from Holland, when I’d picked them up to bring them into hospital. As they sat there, Froukje started to tell the story of a crushing set back that day as she tried to articulate that she still held the possibility of hope. She shared her belief that it wasn’t over just yet, and that the miracle of the liver transplant that might somehow become available for her 5 lb baby who lay in a tiny cradle on the critical care ward around the corner, still might happen as seconds, minutes and days passed by. And as she spoke through clenched desperate tears, each family member one by one, had hunched over, shoulders beginning to heave in unison with cries of their own. Despite the intensity of the story telling, Froukje, and her brother and sister would look up at me and take it in turns to translate each line of Dutch. As Froukje continued expressing her feelings in two languages, each of us in turn reached out to hold each other’s hands in a circle, crying as one.
Somehow, in a perverse and incredibly strange sort of way, I steel feel privileged to have been there to bear witness to this cramped room filled with family pain, hope and support.
And on a Tuesday morning, 3 weeks after her birth, Karlijn, whose organs were beginning to fail one by one like a pack of cards, was somehow still being kept alive. Froukje called me to tell me the unbelievable news that a suitable liver had turned up a few hours north of London, and their amazing Peruvian Surgeon was accompanying the precious parcel to Kings Hospital after he had operated on the donor to remove it in an operation the night before. Froukje was careful to hold herself back on the phone, and was methodically detailing what lay ahead: The Peruvian Surgeon would need to rest and get some sleep for a few hours on arrival at Kings, and then that night they expected him to embark on what would be a 12 hour operation to insert and stich up the new slice of liver into her tiny fragile body. Froukje and Bastiaan knew the risks were extreme, but finally they had a crumb of genuine credible hope.
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Remarkably today just over one year on, the Trommels are now a happy and positive family of four. I am sure a day doesn’t go by when they don’t feel gratitude towards the donor’s family, or feel relief for the beautiful second daughter that they have. But life at the same time is always going to be quite hard, and only last Sunday, on Froukje’s birthday, Bastiaan had to take Karlijn back into hospital for a few days again, as she had caught a bug. The sort of bug that all babies catch and get over with simple rest, some TV and a spoon or 2 of ‘Calpol’; but The Dutchies cannot take that chance with Karlijn and she will spend a few days recovering in hospital each time. They are also wary that a difficult operation still lies ahead for Karlijn to fully re-stich up her stomach. So despite encouraging steps forward, they also have consistent steps back, disrupting normal daily life and restricting them from taking holidays abroad. Yet they both remain remarkably strong and positive and happy, and an inspiration to their dear friends in Putney.
The Dutchies also have the perspective of the debt they owe to the NHS. Although there were moments at Kings in Camberwell, when they had longed to be at home in Holland with their support network on hand and the comfort of familiarity; they know that had Karlijn been born in Holland or indeed outside of London, she most likely wouldn’t be alive today. So when a giggling Famke, a grinning Karlijn wearing a Union Jack vest and a fantastically happy Bastiaan and Froukje joined us to re-watch the opening ceremony of the Olympics last July after the Olympic road race went past our house; we raised our glasses of champagne to toast the wonderfully choreographed scenes that Danny Boyle had created in tribute to the NHS.
I also thought back to the happy tribute when a letter arrived from Dr Al Memar in February, naming the extensive team of doctors who have studied my scans and will be involved in my own surgery. Dad was fairly chipper when I sent him the letter during the Man-U v Real Match. It was a great evening for him, enjoying the fury of Fergie as his team would unfairly have a man sent off and crash out of Europe; and then receiving a list of 6 names of doctors, 2 of whom he knew of and respected greatly, and the rest of whom he would later satisfy himself, were thee national experts in their field if not internationally. And with that information to hand, there was nothing more in our control left to do, allowing both my parents and I to fully move forward (I hope)from the confirmed diagnosis.
To conclude part 1 of this blog, I’d say that it’s not really about the bloody aneurysm anyway. Like Lucy it is all about how I respond, and if I can continue the start I have made this year to live my life with guts to take similar life affirming decisions and risks in the pursuit of fulfilment and happiness like she has done, than I can continue in this happy and excited vein. Roll on Monday morning!
Links:
https://www.organdonation.nhs.uk/how_to_become_a_donor/registration/registration_form.asp
http://www.elephantsandbees.com/research_project/Welcome.html
http://www.savetheelephants.org/
http://www.purecornwall.co.uk/
http://www.guardian.co.uk/football/2013/mar/05/manchester-united-real-madrid-live-mbm
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