Curiosity; never stop searching for answers. Chapter 12

Two roads diverged in a wood, and I –

I took the one less traveled by,

And that has made all the difference

Robert Frost

1874-1963

Life is a journey with many twists and turns.  Some people are dealt a hand of cards that throws up so many obstacles it becomes hard to imagine.  For me the word is ‘imagine’ and what I constantly refer to is that mental box that exists for me.  I sought and seek so often to explain to others what this is but never convey its reality and impact on my day to day life and the necessity for constancy and routine.  The “Box” as I refer to as my consciousness, I have so often written about, not knowing if I was able to convey the meaning.  Regrets, maybe it is just pure selfishness or maybe there are reasons, I have only a few of them.  I am to busy trying to live the day I am within, with no imagination going forward, and amnesia related to past memories, and all I retain is few memories without the autobiographical function that applies to most people.  Eleanor Rose (mum), in her feisty 86 years of fearless life asked me to go to Co. Clare, that she would drive the 140 miles and we could stay in Ballyvaughan; visiting those places we so often visited in my childhood and beyond; meeting with relatives and old friends.  I said No; it was that hideous fear that prevented me from this opportunity of a holiday with my mum, sharing the old stories, thinking about those who I deeply loved and who have passed on, over the decades.  Maybe this was meant to be because it gave my niece Molly the opportunity of having a holiday with her grandmother and learning a little about her life and that of our family.

Traumatic brain injury significantly changed my life and in particular the relationships I had with family and friends; my marriage did not survive it either.  I constantly seek knowledge as to what it is that brain damage does and because of the impact on memory I am forever trying to pass on the information to others especially KT who is ‘Mensa’ http://www.mensa.org/ and seek reassurance that they understand.  Mum as a general practitioner, a rural country doctor, for over 60 years, was the person I most wanted understanding from and that never seemed to be possible.  I know that in deep anger Rose said to me “I know about it; my mother sustained a brain injury as did her Uncle James who was a lawyer so the change of ability and character was evident”; and also a generation back, her grand aunt Emily Blake-Forster died from a brain damage in a horse riding accident.  This was enough said.

Am I religious?  No.  Rose has given me many sets of Rosary beads and little seeds of wisdom about the importance of having a belief system.  I constantly say that all my family and friends who have passed on are continually with me.  Ironically, now Rose is there.  I can’t visualise these people but in September of this year, as I have written about in Chapter 10, my curiosity was to follow a journey that lead me to Professor Adam Zeman, University of Exeter, a doctor who named the condition Aphantasia in 2016.  Is this Eleanor Rose saying to me, I now understand and I leading you in a direction to help me understand what I so often try to explain without the ability to really comprehend myself?  You will have to be patient with me as I try and connect the reader with this extraordinary path provided.  The coincidence moves one stage further with the name Eleanor Maguire and for two reasons; Eleanor as my mum’s name but Maguire is the name of Jim Maguire, RIP too young at the age of 52, my psychiatrist, who became a friend but most importantly a mentor.

The marvels of the internet age is that deficits can be challenged and you can engage in a virtual world that connects you direct to the source, therefore this reply is a real treasure for me.  The wonder is that this eminent Professor took the time to reply to me as follows:

Dear Michelle,

Many thanks for your message.

We have much to learn about this still, but I promise to remain curious about it!

Best wishes,

Adam

September 5th, the day after my visit to St Vincent’s Private Oncology for my second last Herceptin infusion, I received the first response from Professor Adam Zeman, University of Exeter Medical School, Devon, UK, with four links.  As an activist mainly through writing emails in relation to the poor provision of mental health services in Ireland, I was very surprised to receive such an informative and inclusive reply from Professor Zeman, Exeter University, with an apology for a delay in replying, due mainly to the volume of mail he receives.  He said it would be helpful to the “project” if I could contribute some more information.  I answered the two questionnaires.  The first one was a well-established test of imagery vividness known as the VVIQ; the second questionnaire explores your personal experiences of imagery in more detail.  What runs deep in the core of my thinking is that respect and engagement is given to the the patient; it is essential and so often in the elitist field of medicine is lacking.  To consolidate the connection through my email to Professor Zeman and his reply, they asked for confirmation that I wanted them to keep me informed about future updates.  Aphantasia was only named in 2016 and it is possible to assess the progress of the work via the Eye’s Mind Study website: http://medicine.exeter.ac.uk/research/neuroscience/theeyesmind/

These findings are gathering considerable momentum and for me personally I am relieved because traumatic brain injury and its effects form such a part of the great unknown and you are constantly side-stepped because brain injury has invisible/silent symptoms and what is so very real a deficit to you as a person with brain injury, is glossed over with the reassurances by the medical profession, academics and people in general,  who with professional authority, state that every brain injury is different which leaves you further in the darkness of your reality. I have countered this by knowing one of many realities of what happened with the brain injury, I was left completely deaf in my right ear so for me this is one tangible that I know, and it reassures me that other deficits apply too. Now Aphantasia, coined by Professor Zeman in 2016, gives substance to what the Mind’s Eye entails.  I cannot imagine.  As I read all that is available on the internet, I can identify with what is researched and is endorsed by science.   This in turn for some people with brain injury allows you to accept silently defined challenges thus providing other coping mechanisms.  Medical research now more than at any other time can tap patient engagement by the simple use of an email and a reply.  The global media coverage, on Professor Zeman’s research, resulted in more than 10,000 people worldwide, coming forward to be involved.

The internet, youtube, TED talks, Nobel Prize Org, Harvard, Professor Jordan Peterson Toronto University, or just googling the word ‘Aphantasia’ and the term which was coined by Professor Zeman in 2016 is described as “the lack of ability to summon imagery to the mind’s eye, as we do when we count sheep or visualise an absent relative.”  In doing so, he gave voice to people whose experience differs from that of friends and family.  My mum past away Christmas 2017, at a time this Mind’s eye research was nominated for “Oscars” of Higher Education (Times Higher Education Awards 2017). The significance for me of this research and findings is that I cannot visualise my Mum or remember meetings every week.  However I can say that amnesia and the inability to form memories has one positive advantage, I have little recall of breast cancer and what I know to be in place, as described by Professor Crown as ‘the sledgehammer to catch the fly” approach, for one year now.  KT constantly reminds me but I rely on him too and his extraordinary memory to add normality to my day; he so often re-constructs past events, recreating the situation, naming the people concerned, and fills in the details, so that I can engage often in silence and pretence. This concept of people who cannot visualise was first identified by Sir Francis Galton in 1880.  It has taken over 130 years for it to receive the attention it merits and this is from the engagement of what first must have been a concept to research to findings by Professor Zeman and his team.  To give significant endorsement of what this finding called Aphantasia is, I will quote Blake Ross, the Facebook technology innovator who founded Firefox:- http://www.independent.co.uk › News › Science

Blake Ross wrote how his “mind was blown” when he discovered he had Aphantasia.  In his Facebook blog that was shared over 15,000 times, he said it explained what he had always experienced as being “stupid-smart” – intelligent at many tasks but lagging behind when visual memory was involved.  He wrote the discovery of aphantasia was “as close to an honest-to-goodness revelation as I will ever life in the flesh.

To me, Aphantasia tells me stop trying to explain to others.  The gratitude list idea of Ariana Huffington, Huffington Post http://www.theatlantic.com/technology/archive/2018/01/does-counting…/549638/ is another great gift and add to this the routine that KT helped me create.  KT recognised that I needed on a daily basis a routine, the constant reminders, the limitations of actions, the importance of going out every day, the essential necessity of keeping my curious mind active and for this there were books, magazines, conversations with different people, watching comedies on the TV, and FBI investigations seeking out criminals; (films are beyond my memory capacity, sequence can be difficult and then amnesia means you forget).  Conversations are particularly difficult for me, I tend to state words based on facts but the sequence can often be a problem especially if I am tired and KT comes to the rescue and puts the story together.   Yes ‘Stupid Smart’ is the paradox.  KT has ensured at all times that the computer is the foundation of each day, noting that emails give me information within the day, this in turn enables me to write on topics which with the technique which has evolved over the decades of using pre accident memory, most likely my teenage years and childhood, to compose emails which most often relate to social injustice.  The discovery of Twitter has in 2010 opened up such a vista … because I can use it to augment my memory.  This is done by other people with brain injury also.  For us, Twitter becomes are own version of artificial intelligence.

Twists and turns, well here comes another for September 2018 and perhaps it is my mum saying now she understands.  Earlier on I highlighted the name Professor Eleanor Maguire http://iris.ucl.ac.uk › IRIS and the associations with both names.  Trawling through all the newspapers, there was a glossy magazine enclosed.  It was the 2018 UCD publication.  What caught my attention was the heading “Exploring the human brain” on page 34.  Eleanor Maguire was named as one of “Twenty Europeans who changed our lives” http://alumni.ucd.ie/awards/awardees/2016-awardees/.  Eleanor Maguire, a UCD graduate, has been prolific in breakthroughs in the understanding the human brain.  If you have an interest in this area of neuroscience, I recommend this March 2014 lecture http://www.youtube.com/watch?v=gdzmNwTLakg

Her research proved that patients with amnesia cannot imagine the future.  Her other research breakthrough was on London taxi drivers, observing their brains are more highly developed than their fellow citizens.

Immediately I was captivated by ‘amnesia’ and ‘not being able to imagine the future’.  But added to this was the concept of spatial.  In my prior life, I had no problem with spatial memory.  It was this loss that caused me such frustration and upset and then in turn it caused such anxiety and fear leading in the early years to agoraphobia even to the point that I would not go out onto the balcony of the apartment based on fear.  I returned to live in areas that I had pre-accident memory consolidation.  Holidays or simply going to different lectures at Trinity College Dublin became such a traumatic events for me because I just could not get spatial organised in my head.   This all consuming fear most likely was the reason I could not go on that last holiday with my mum and I was unable to overcome the fear.

My curious mind said I had to make contact with Professor Maguire to find out if she could even give me some links to help me understand her research.  Professor Maguire, Wellcome Trust Principal Research Fellow and Professor of Cognitive Neuroscience at the Wellcome Trust Centre for Neuroimaging at University College London http://www.fil.ion.ucl.ac.uk/ where she is Deputy Director, took the time to reply to me as follows:

Dear Michelle

Thank you for your email.

I attach a paper we wrote on this topic a few years ago – it has some technical jargon in it it, but hope the gist is still clear.

Kind regards

Eleanor Maguire

Professor Eleanor A. Maguire

University College London

Professor Maguire heads the Memory and Space research laboratory at the centre.  In addition, she is an honorary member of the Department of Neuropsychology, National Hospital for Neurology and Neurosurgery http://www.uclh.nhs.uk/OurServices/OurHospitals/NHNN, Queen Square, London.  Ironically in 1993 it was Jim Maguire RIP, psychiatrist, who when I sustained the brain injury, recommended I attended the only neuropsychologist in Ireland at that time (Dr Martina O’Connor McEnroe) for the necessary assessments – and perhaps this is part of ‘making all the difference’.

I have transcribed this Professor Eleanor Maguire 2014 link http://www.youtube.com/watch?v=gdzmNwTLakg because it helps me to better understand the content and I have to say it is essential for people with brain injury; their medical teams, their advocates, their carers  to watch this.  The research relating to London taxi drivers is fascinating and especially in the case of the taxi driver findings where he had brain damage.

You may ask why the brain?  Why not?  Too often I have heard the word ‘secondaries’ or metastatic cancer and although in my case breast cancer was identified and dealt with early, you realise if you talk to other people with cancer that while they often have remissions, the cancer tumours still come back and now that we live longer, it becomes more probable.  I have known of several people where the secondaries relate to brain cancer and like pancreatic cancer, it is acute and terminal.  The brain in the case of stroke, traumatic brain injury, and cancer, depending where the tumour is, can throw up all kinds of hidden outcomes and it helps if you understand and this is why this is included.  Curiosity is essential for me and I am in constant search of answers so I include a piece from the Abstract titled Mind-wandering in people with hippocampal damage by Cornelia McCormick, Clive R. Rosenthal, Thomas D. Miller and Eleanor A. Maguire Journal of Neuroscience 12th February 2018 http://doi.org/10.1523/JNEUROSCI.1812-17.2018 which is relevant in my case.  I also recommend HM (Henry Molaison) http://www.youtube.com/watch?v=_7akPs8ptg4

Two prominent features of mind-wandering are mental time travel and visuo-spatial imagery, which are often linked with the hippocampus.  People with bilateral hippocampal damage damage cannot vividly recall events from their past, envision their future or imagine fictitious scenes.   This raises the question of whether the hippocampus plays a causal role in mind-wandering and if so, in what way?

Having the opportunity to research people (all males) with bilateral hippocampal damage for several days, they examined for the first time what they thought about spontaneously, without direct task demands.

Findings:  Controls thought about Past Present and Future, imagining vivid visual scenes, “hippocampal damage resulted in thoughts primarily about the present comprising verbally-mediated semantic knowledge”.

…”However, hippocampal damage changed the form and content of mind wandering from flexible, episodic, and scene-based to abstract semanticized, and verbal.”

The findings expose the hippocampus as a key pillar in the neural architecture of mind-wandering and reveal its impact beyond memory, placing it at the heart of our mental life.

Added to this is the inability of people with amnesia to imagine themselves in new experiences*, I feel so ecstatic to have in writing the foregoing because I wholly identify with these findings. Ironically I know from my Twitter @canisgallicus that I had previously come across the name Demis Hassabis who co-founded DeepMind, a London-based machine learning AI (artificial intelligence) startup with Shane Legg and Mustafa Suleyman.  Artificial Intelligence is what I say I have when I use technology and especially Twitter to augment my memory on a daily basis; it being highly effective in granting me general factual information which I can use in conversation in the day.  Twitter also enables me to connect with other people with cancer and we can share information and support each other in the journey going forward.

*One of his (Demis Hassabis) most highly cited papers, published in the Proceedings of the National Academy of Sciences of the United States of America, showed systematically for the first time that patients with damage to their hippocampus, known to cause amnesia, who are also unable to imagine themselves in new experiences.

As a person who is the service user, the patient, the person whose life was significantly changed beyond comprehension as a result of sustaining a fractured skull in a horse riding accident, daily (what I often refer to as my Groundhog Day) I seek reassurance.  The personal trauma for me resulted in much frustration, anxiety and depression, chronic fatigue and now breast cancer but it also had a significant impact for family and friends also.  Long ago and far away people who had a brain injury were often referred to as having had a personality change, part of which often included those closest to them, be it spouse, family, friends being embarrassed by the dis-inhibited behaviour especially if part of the dis-inhibited phase resulted in the revelation of all that was deemed secret within the family.  As I have said before.  My marriage ended in an acrimonious divorce.

Traumatic brain injury, bipolar, anxiety, breast cancer, and dementia involves that fear which is a component that runs deep within and it delves so deep it into your emotions that it is a prominent factor in how you live your life daily and within that strict routine which makes stepping out of life just one step from the brink.  My mum really understood this relentless fear and how it haunts me because she knew first hand from the early months that passed into years of the outcome of traumatic brain injury. This link provides clarity and details of what is the silent aspect of brain injury and especially how I fear the onset of an early dementia related to TBI and now the fear that if the cancer spreads that it would be to the brain http://www.traumaticbraininjury.com/symptoms-of-tbi/severe-tbi-symptoms/. Mum knew that for me having early onset dementia would mean that I would want to walk off this stage called life, having had aphasia and the struggling for inclusion, I know I don’t ever want to be there again.  This is further endorsed when I became lithium poisoned which resulted in psychosis which was greater fear and being so alone with it.  My preference would be death rather than dementia; it hard enough to survive with dense amnesia.

Multimorbidity: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(18)30941-3/fulltext

To update health-care systems in the face of the increasing burden of multimorbidity will require a shift for physicians from specialists to generalists, likely through changing payment models to incentivise improved patient outcomes… Another shift will be greater patient technology to support self-management of conditions. Integrating care in creative ways, such as treatment centres for multimorbidity clusters (for example, hypertension management within HIV clinics), could provide other scalable options.

Multimorbidity is a challenge that we all face as we live longer.  I fall into this category and have engaged where possible with technology to enlighten me.  To add yet another twist.  Youtube has provided me with great support in particular since I was diagnosed with breast cancer through the connection with music of my era.  At this moment in time I am listening to Frailty (Sting and Stevie Wonder) which is so appropriate, empowering and soothing when discussing multimorbidity which comes with more illnesses as we age http://www.youtube.com/watch?v=gnZgNYoZkeU. In earlier years I wrote a lot on depression (diagnosis Bipolar) but this book relates more specifically to the impact of a brain injury and and laterally breast cancer (with much illness over two decades).  Living effectively in the present in a one dimensional focus I am forever seeking answers relating to the brain.  Neuroscience especially since the 1990’s is on the ascent thankfully towards just how important the brain is.  To return to the words twist and turns I read an article of major significance recently by Sylvia Thompson, Life Sciences, Irish Times  http://www.irishtimes.com/…/science/how-tuning-in-to-music-can-stimulate-the-brain… about the importance of tuning in to music which can stimulate the brain.  I have written previously about fear and its impact on your sense of being human.  Add to the power of music which conjures up different emotions, those historic memories before the brain injury, fond memories of childhood and so much desperate searching for proof that you are really a human being and you do exist.  You see, when dense amnesia is the outcome of a fractured skull, memories and imagination are scarce because that part of the brain (hippocampus) is damaged.

Another academic who kindly replied to my email. 

Thank you Dr Catherine Jordan, neuroscientist, who is Atlantic Fellow at the Global Brain Health Institute in Trinity College Dublin http://psychology.tcd.ie/gbhi/ whose research is music and memory.

As an Atlantic Fellow for equity in  brain health.  Dr Jordan has a specific mandate to seek social and public-health solutions to reduce the scale and impact of dementia….

Researchers have found that playing a musical instrument engages motor, auditory and visual parts of the brain which results in more grey matter – the clusters of neurons in the brain and spinal cord.  “Music engages higher order cognitive functions such as organising and monitoring and brain image have shown a larger corpus callosum – the bridge between the two brain hemispheres – in musicians.”

Albeit a mere patient (person who suffers from Greek) or to be more commercial, a service user,  my experience tells me I must agree with the finding

“Researchers have also found that musical memory is one of the last types of memory people with dementia lose.  It is also interesting that there is some theoretical evidence that suggests musical memories are stored in a different part of the brain to other forms of memory”.

I am just a child who has never grown up. I still keep asking these ‘how’ and ‘why’ questions.

Occasionally, I find an answer.

Stephen Hawking

The twists and turns that having removed the fear and kept me occupied are summed up nicely in this quotation by Stephen Hawking.  For me, living in the now, forever in the present, is no longer embedded in fear; curiosity is my savior.  Freddie, my multi-breed of canine friend is a routine artist too and he never let’s me forget that it is time for his walk.  I can’t understand how he knows the time, when it just passes me by with no impact.  We put on his lead and off we go. We met a neighbour.  His niece has been diagnosed with cancer and I asked about her progress.  He kindly said but of course you know what she is going through.  I had to be honest and acknowledge that in this case I am lucky because I have no recollection as result of dense amnesia which makes it very hard for KT who really can recall what the last 16 months involved going through treatment.

My last day for Herceptin infusion at St Vincent’s Private Hospital, 3rd floor, Oncology.  Professor Crown had given me the name of his researcher Karen Culhane because I explained that I had been writing this in book form on my WordPress site and wanted it to be published as a book with part of the proceeds being donated to The Cancer Clinical Research Trust http://www.ccrt.ie/The Cancer Clinical Research Trust is dedicated to reducing the burden of cancer suffering through the development of improved treatment for cancer patients.  Conscious as I am of all the scandals related to charities in Ireland, I was pleased to hear that Professor Crown, also former Senator, Dail Eireann supports lean operation of the trust incorporating researchers from both UCD and DCU.  Ireland needs to compete on the global stage and we need people to promote Ireland.  In regards to cancer research it is essential that Ireland has a level playing field and as Brexit looms and March 2019 is the UK’s exit from the EU, we need to engage with Cern technology which is used in cancer detection.  This Cern technology is online to be used in cancer detection and treatment at UK’s first high energy proton beam therapy centre.

Technology from the ATLAS experiment at the Large Hadron Collider (LHC) where the Higgs Boson was discovered – will be used in hospitals to improve cancer treatments that employ proton beam therapy….The LHC is the world’s largest and most powerful particle accelerator.  Beams of protons collide at the centre of the ATLAS detector creating new particles from the debris at the collision point…Now scientists from Birmingham and the University of Lincoln are developing some of the of the most complex medical imaging systems ever created based on the detectors at the ATLAS experiment, which will be installed at the UK’s new NHS high energy proton beam therapy centre at the Christie Hospital, Manchester.  The new instrument, called the OPTima (Optimising Proton Therapy through Imaging), will be used to create 3D images of the internal anatomy of cancer.

The project is funded by a £3.3 million grant from the UK’s Engineering Physical Sciences Research Council (EPSRC).

The new device will be based in the dedicated research room in the NHS proton beam therapy centre at The Christie NHS Foundation Trust in Manchester (funded by The Christie Charity)….

The proton beams will create images of the patient’s anatomy to enable improved targeting of the cancer, providing better treatment and monitoring for difficult to treat cancers.  Accurate proton CT images can reduce uncertainties during proton beam therapy and therefore reduce further doses to healthy tissues near the tumour.

For further details:-  http://sciencebusiness.net/…/cern-technology-be-used-cancer-detection-and-treatment…

An article by Padraig Hoare, business section, Irish Examiner http://www.irishexaminer.com/…/cern-membership-vital-for-irish-universities-872312.h…

Ireland must apply for membership of the world renowned European Organisation for Nuclear Research (Cern) in order to combat the effect of Brexit and boost university rankings….Mr Burke says Ireland needs to become a full member of Cern or risk missing out on £300 million of contracts….Cern is also involved in advanced cancer therapy, IT, biomedical, and other research.

The World Wide Web began as a Cern project in 1989.  Membership can cost up to £10 million annually….. (there is a possibility that Ireland would have to pay a reduced amount and if Israel is a member why not Ireland)?

Cern is home to the Hadron Collider, the world’s largest and most powerful particle accelerator.  Cern was set up in 1954 in Switzderland, near Geneva.  There are now 21 European countries, as well as Israel.

To come back to Professor Crown and running a “lean” form of charity; I suspect that Ireland has way too many charities with too narrow a vision as to how science is progressing as in this example of Cern.  We need vision and in particular at the level of academics who know what is needed.  There needs to be a root and branch reform of charities.  We need to be assured that The Irish Science Teachers Association are heard when they state “Ireland’s presence in Cern “would allow researchers to achieve similar discoveries that had changed the face of science and medicine in recent years”.

Hope is a powerful word and sometimes it can leads to what is awesome.  The Nobel Prize in physiology or medicine:-  http://www.sciencenews.org/blog/science-ticker/cancer-immunotherapy-wins-2018-medicine-nobel-prize

James P. Allison of MD Anderson Cancer Center in Houston and Tasuku Honjo of Kyoto University in Japan have won the Nobel Prize in physiology or medicine for advances in harnessing the immune system to fight cancer.

All previous types of cancer therapy were directed at the tumor cell, but Allison’s and Honjo’s approach was to remove brakes that keep the immune system in check, unleashing it against tumor cells. These “checkpoint inhibitor” therapies have greatly increased survival of cancer patients and may produce even greater results when combined with traditional therapies.

A beautiful piece written by Gaynor French (sadly she passed away recently) in the Irish Examiner concerning Dignity in Death; I cannot add any more words to what is contained herein but I share so Gaynor’s views http://www.irishexaminer.com/breakingnews/ireland/i-have-lived-with-dignity-i-want-to-die-with-dignity-838693.ht

I have to say undue suffering should give way to assisted dying.  Having read Admissions, A life in Brain Surgery, by Henry Marsh, I fully appreciate his words

I do not believe in an afterlife.  I am a neurosurgeon.  I know that everything I am, everything I think and feel, consciously or unconsciously, is the electrochemical activity of my billions of brain cells, joined together with a near-infinite number of synapses (or however many of them are left as I get older).  When my brain dies, ‘I’ will die.  ‘I’ am a transient electrochemical dance, made of a myriad of bits of information, as the physicists tell us, is physical.  What those physical myriad of pieces of information, disassembled, will recombine to form after my death, there is no way of knowing.  Perhaps now it will be a walnut and apple in the cottage garden, if my children choose to scatter my ashes there.

When the time comes, I want to get it over with. I do not want it to be some prolonged and unpleasant experience, presided over by terminal-care professionals, who derive their own sense of meaning and purpose from my suffering…If euthanasia is legalized, this question of how we can have a good death, for those of us who want it, with pointless suffering avoided, can be openly discussed, and we can make our own choice, rather than have it imposed upon us.

While having my last infusion of Herceptin, the woman beside me seemed so very accomplished in her life and I had so very little to contribute.  Eventually, I said about being bipolar and that I found cancer a dawdle by comparison to the grips of a non relenting depression and she cheerily said what a paradox here; with depression all you want to do is die but with cancer here you are trying to remain alive.  Yes, she spoke the truth.  My life experience tells me that depression is hateful and being demented is appalling and yes I want some control over the decision to live or die if I am to be a burden to society.  I think of this most remarkable man in Australia, Dr David Goodall, a 104-year-old British born biologist, who raised money through a crowdfunding campaign, and flew from his home in Australia to end his life at the Eternal Spirit Clinic in Switzerland.  Dr Goodall was a member of Exit International, an assisted dying advocacy group, for more than 20 years.  He listened to Beethoven’s Ode to Joy as he turned the wheel that released a lethal infusion into his bloodstream through a cannula in his arm.  Yes Peace at one’s own discretion and knowledge; not as happens in Ireland and other countries who do not permit assisted dyingm where the person is stripped of all consciousness to a demented being. who can longer engage in living and loving.

The National Screening programme sent out a letter to invite me for a mammogram dated August 2019, one year anniversaries now mean a breast check every year. The letter is not intrusive or demanding; it clearly says if you don’t reply, then your appointment is cancelled.  Thanks to KT checking my post last year and being forever vigilant for my well-being, he ensured I attended and the foregoing is the narrative.  At all times KT has been my best friend and of course my mentor and advocate.  My dearest mum, Eleanor Rose, always ensured that I had health insurance cover, over the decades of illness and when she passed away at Christmas, while I was going through, Chemotherapy, I was fortunate that the VHI did not accept the cancellation made by the executors of my mum’s estate and cancel the VHI.  This is the real what if about my journey with cancer?  Would it have made any significant difference if I had to go public?  Hopefully not.

Ireland benefits from America.  Many Irish doctors continue their training in the top US hospitals before returning to Ireland.  While talking to someone recently from the US they told me that if you have no health cover (which is usually part of your employment package), your assets, often starting with your home, become the payment for your illness.  If you don’t pay,  you receive no healthcare and if it takes time to consolidate your assets to get the money to pay, you can move swiftly from an early cancer to a cancer that is really serious and one that you may not survive.  Derem Beres in the Big Think publication outlined that a new study delivers the dark financial side of cancer and it found that 42% of new cancer patients lose their life savings.

http://bigthink.com/politics-current-affairs/how-much-does-cancer-cost?rebelltitem=2#rebelltitem2

A new study, published this month in The American Journal of Medicine, discovered that 42 percent of patients deplete their life savings during the first two years of treatment.

Rebecca Meyer was diagnosed with glioblastoma when she was 5 years old. She fought bravely for 10 months before dying on her 6th birthday. The total cost of of her treatments during that time? $1,691,627.45.

If I did not have healthcare at least in Ireland the public health system would ensure that there is the follow up treatment to the outcome from the National Screening Service Programme and I would be treated in an equitable way.  The question however rests with the Pharmacological industry and that is would I be able to have the infusions which cost between £4,000 to £8,000 every three weeks or other medications.  Many people in Ireland are now resorting to crowdfunding to raise money where the health service cannot fund the necessary treatments.  There is always another option and that is to be part of a clinical trial.

Much as you may find it hard to believe but I have no recollection of having had breast cancer or do I have any plans going forward.  The writing of this book is simply to bear witness to the fact that yes I was diagnosed with breast cancer and treated by a most capable team under the direction of Professor Crown, Oncology Consultant, and Professor Armstrong, Consultant Radiation Oncologist but what I do know is that therein is a great a paradox for me.  I can look at a quotation from Nobel Prize winner Eric Kandel “Memory is everything.  Without it we are nothing” and compare it to that quote which for years has given me solace and which is used by Professor Eleanor Maguire in her lecture about memory “It’s a poor sort of memory that only works backwards” by Lewis Carroll and I can genuinely say that I know that if you have the right supports, the curiosity within, that element of hope that says proceed, you can survive.

Michelle Clarke
Conclusion:  26th October 2018
.

 

 

 

 

 

 

About michelleclarke2015

Life event that changes all: Horse riding accident in Zimbabwe in 1993, a fractured skull et al including bipolar anxiety, chronic fatigue …. co-morbidities (Nietzche 'He who has the reason why can deal with any how' details my health history from 1993 to date). 17th 2017 August operation for breast cancer (no indications just an appointment came from BreastCheck through the Post). Trinity College Dublin Business Economics and Social Studies (but no degree) 1997-2003; UCD 1997/1998 night classes) essays, projects, writings. Trinity Horizon Programme 1997/98 (Centre for Women Studies Trinity College Dublin/St. Patrick's Foundation (Professor McKeon) EU Horizon funded: research study of 15 women (I was one of this group and it became the cornerstone of my journey to now 2017) over 9 mth period diagnosed with depression and their reintegration into society, with special emphasis on work, arts, further education; Notes from time at Trinity Horizon Project 1997/98; Articles written for Irishhealth.com 2003/2004; St Patricks Foundation monthly lecture notes for a specific period in time; Selection of Poetry including poems written by people I know; Quotations 1998-2017; other writings mainly with theme of social justice under the heading Citizen Journalism Ireland. Letters written to friends about life in Zimbabwe; Family history including Michael Comyn KC, my grandfather, my grandmother's family, the O'Donnellan ffrench Blake-Forsters; Moral wrong: An acrimonious divorce but the real injustice was the Catholic Church granting an annulment – you can read it and make your own judgment, I have mine. Topics I have written about include annual Brain Awareness week, Mashonaland Irish Associataion in Zimbabwe, Suicide (a life sentence to those left behind); Nostalgia: Tara Hill, Co. Meath.
This entry was posted in Uncategorized. Bookmark the permalink.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s