- February 2019
- January 2019
- December 2018
- November 2018
- October 2018
- September 2018
- July 2018
- June 2018
- May 2018
- April 2018
- March 2018
- February 2018
- January 2018
- December 2017
- November 2017
- October 2017
- September 2017
- August 2017
- July 2017
- June 2017
- May 2017
- April 2017
- March 2017
- February 2017
- January 2017
- December 2016
- November 2016
- October 2016
- September 2016
- August 2016
- July 2016
- June 2016
- May 2016
- April 2016
- March 2016
- February 2016
- January 2016
- December 2015
- November 2015
- October 2015
- September 2015
- August 2015
- July 2015
- June 2015
- May 2015
- March 2015
- January 2015
Timeline of constant ill-health 1992-2017 when diagnosed with breast cancer. The book outlines 2017 to 2018
Citizen Journalism Ireland: Selection of articles to Government and related: (March to December 2014) by Michelle Clarke
Citizen Journalism Ireland: Homelessness Dublin. Anniversary of the death of young man adjacent to Government Buildings 2014; comment 1st December 2015 and other postings 2014 and 2013 by Michelle Clarke
via Citizen Journalism Ireland: Homelessness Dublin. Anniversary of the death of young man adjacent to Government Buildings 2014; comment 1st December 2015 and other postings 2014 and 2013 by Michelle Clarke
Timeline of constant ill-health 1992-2017 when diagnosed with breast cancer. The book outlines 2017 to 2018
1992 to 2018 – Health history:
Michelle Clarke Dublin 4.
- Ireland (Psychiatrist) – first serious unipolar incident of depression – ECT necessary but alternative was that I remained at home and psychiatrist Jim Maguire visited me while I stayed at my mother’s home. This lasted nearly 6 months. I then moved to Zimbabwe to join my husband.
- Neurosurgeon Zimbabwe (Hospital – fell off horse while jumping). Skull Fracture. (X rays returned to Ear Nose Throat specialist Mater Hospital, Dublin)
- Ear Nose and Throat Specialist Zimbabwe. Deafness right ear established and loss of smell.
- Ear Nose and Throat Specialist – Mater Private Hospital (Confirmed diagnosis of Zimbabwean ENT specialist)
- Specific hearing examination
- General Physician (5 weeks Lourdes Hospital, Drogheda)
- Neuro-Psychologist Dr Martina McEnroe O’Connor – Only person practicing in Ireland at time (Recommended by Jim Maguire).
- National Rehabilitation Board, Clane – accepted
- Speech Therapy re. (Aphasia, concentration)
- Physiotherapy – To walk forward, I might walk backward, falling, ataxia
- Irish neurosurgeon, Mr Staunton. No interest or belief in neuro-psychologist who had been recommended by my psychiatrist.
- Heart Physician (drugs impact)
- My husband wanted me to return to Zimbabwe. Likewise I wanted to go. Neuro Psychologist, preference was that I attend rehabilitation in Ireland as marriage unlikely to withstand…(refer Report).
- Trinity College Dublin – Speech Therapist St. Giles Harare
- Physiotherapy – Harare
- Monitoring of drugs by GP. I had to return to Ireland every few months for prescribed medications and to meet with psychiatrist.
- Psychiatric admission Harare (Marriage had broken down). Drug issue. 2nd time almost told I nearly died. They were unaware of ‘cocktail’ implications. Psychotic in retrospect. Anorexia re-activated and significant loss of weight.
- My husband was unable to cope with my accident and the complications. The outcome was he placed me in psychiatric hospital in Harare and left me there until my brother came to collect me – of which I have no recollection.
- Ireland: Saw advert for Trinity Horizon Programme https://canisgallicus.wordpress.com/…/trinity-horizon-research-program…– structured daily Monday to Thursday research study of 15 people with depression and how to re-integrate to the work environment or further education. Extremely depressed when I started the programme.
- Psychologist – Dr. Sean Collins (Psychotherapy) – Penebaker process used,under his strict supervision. This was most severe breakdown. Sean hoped this would work, he was determined having seen me ‘try to cope’ that I didn’t need another depression
- Psychiatrist Dr. Jim Maguire said (no to group counseling or sports activity on Trinity Horizon). Jim believed that as my depressions are so severe, there is no point during the time I am well to invoke anything that would cause pain. I hold Jim Maguire in very high regard.
1997 Accepted BESS Trinity College Dublin https://www.tcd.ie/bess/
- Sick 9 months – 5 in Navan, Co Meath Psychiatric Hospital (no memories) apart from what was written in diaries. 15 rounds of ECT. Change medications to Lithium cocktail. MAOI’s stopped.
- Heart Physician Dr. McGarry at Navan Hospital
- Psychologist, Navan Hospital. I was over 5 months in night clothes only. It was a public hospital. There were six in the ward. A woman in the bed opposite became very disturbed. I sat with her and talked to her for hours explaining Why not? How hard it is for the children? I tried to dissuade her. Poor Eleanor wasn’t persuaded….she hugged me and I stupidly thought I changed her mind….but no. Her children were professional, one an actuary. She told me to pursue education – she gave me a poem specially written for the Student.
- Before I left hospital I met with the psychologist there to prepare me for coming out.
- Speech Therapy department Trinity College Dublin. Probable that the academic standard and exposure to language prior to age 10 built up a sufficient stock of words, which I was able to draw on. Probable as my parents read; father read all newspapers and had a keen interest in politics and my cousin Sir James Comyn a barrister, came home from London every weekend and there was intellectual conversation for a child that was not exposed to children.
- Psychologist at Counselling services Trinity College Dublin. I have attended Tenia since 1999 when I returned to College. This was cognitive behavioral therapy. Tenia was exceptional in her commitment.
- GP in Castleknock re. drug prescriptions/blood tests
- GP Ballsbridge re. drug prescriptions/blood tests. Lithium must be monitored.
- Eye Specialist – Professor Lorraine Cassidy (Trinity). Report provided to Trinity. Copy on file.
- Suicidal Depression – possibly reactive. Trinity notified.
- 2 appointments with Neuro-psychologist, Dr. Martina McEnroe O’Connor (December 2002 and January 2003)https://www.headway.ie/download/pdf/carerguide_redraft.pdf
- ‘Drop dead’ exhaustions left me very disabled;
- More brain damage determined from the head injury in 1992 meaning all 5 senses are affected by damage; 6 hours of neuro-psychological assessment as the Disabilities department Trinity College Dublin claimed the other reports were of no importance. Likewise when I presented with this in May 2003 Disabilities officer, Declan Treanor, paid scant attention to it,unlike the advice of the psychiatrist who suggested Martina McEnroe-O’Connor (neuro-psychologist) in 1993 when she was the only person with her qualifications and attended high court actions etc and of course Tenia Kallionitz, Cognitive Behaviour therapist who worked for Trinity College Dublin counselling Service.
- I was man handled by four gardai at the Peace March at the Dail. They would not listen to the screams in pain (mobility, muscles weak, stiff) due to the neurological/medical complications that retards my movement to very slow calculated pace and severe pain. Unexpectantly Gardai charged at protesters. 4 Gardai grabbed me and moved me some distance before dropping me. My head banged off the pavement. I was removed by ambulance to St James’ Hospital Accident and Emergency and later released.
- Health deteriorated rapidly. Unable to leave home and attend doctor. This would have been the only time I did not attend Trinity this year.
- It transpired I had developed a thyroid deficiency and was in need of eltroxin. My metabolism had been affected. This happens with Lithium and is further life medication.
- The medical report from St. James remains there. The system is so incomplete that you can get neither the hospital nor doctor to request same. They mentioned I may have Parkinson’s also but of course that like other illnesses is always a possibility with mental illness. Also encounter anorexia periods i.e. side effect of antidepressants.
- Precipitating events or maybe it was just effects of TBI difficulties re-activated agoraphobia. People tend not to be aware that each precipitating event with depression throws up the phobias to be dealt with again. Agoraphobia created major problems in my teens.
- Teeth: considerable work done by Edward Cotter dentist – Clyde Court, Dublin 4. Medications cause gum problems.
This was what was submitted based on request from Trinity College Dublin as follows:
This is Michelle Clarke’s Health History
Dr. Margret Fine Davies – Centre for Women Studies
To Disabilities Department Trinity
To Psychology Department Trinity
To Tutor Brian Lucey
To Professor Holton
To Professor Laver (The sole reason these people received this report related to the conference they held regarding my application for accommodation of my needs re. the final section of my degree).
16th November 2003 submission date, I delivered to the BESS office what could have potentially provided me with a BESS Degree. In the absence of acknowledgment, I intend to publish same on WordPress now and only now after a further 11 years of ill-health. It may be an advantage to someone else. I have been asked by a variety of people to write up on my experiences, people who often are seeking advice concerning mental health, traumatic brain injury, the power of education and the importance of third level education especially if you have mental health or neurological difficulties as a stepping stone to acceptance.
- 23/11/03 – Met Kevin Walsh who took a pro-active approach – initial focus diet, exercise and confidence building.
- Circa February I met with Dr. Moroney and two weeks later underwent an MRI scan. Dr. Moroney gave a thorough examination. Nothing organic was found. The concern was the Parkinsons as suggested at St. James’ Hospital.
- Still feeling unwell and visited General Practitioner. He sent me for a lower back xray at Baggot Street. His locum, Dr. Hurley explained the damage to the lower three vertebrae. The cushioning/sponge was no longer there. She listened to both what Kevin and I had to say and she felt it advisable to attend a Rheumatologist. At this time, there was considerable body weakness and shortness of breath.
- Next appointment was at the Mater Private. I was very distressed at this stage and caged in. Mrs. Fenlon’s daughter (Dentist who I attended when I was younger) was the radiologist. The xray revealed a clouding around lower back.
- Then I went to Cardiology. This proved okay.
- Still unwell. Mum intervened via Kevin’s suggestion. I went to Bons Secour for an onslaught of tests (in excess of a week). Conor Burke’s letter said that basically all was okay – nothing organic was found. The Bone Density recommendation of change of lifestyle.
- The neurologist questioned the weakness and reiterated the point.
- Mr. Moorehouse, Psychiatrist, stated clearly that the body weakness was in line with the use of my mental energy and in line with Dr. Cassidy’s report about my right eye.
- Dr. Griffin, Endocrinologist found a problem with my thyroid levels but this was something that would take time. As per Jim Maguire, she stated the Lithium/thyroid balance and monitoring.
- The appointment with Dr. Sant did not happen while in hospital. I was to contact her for a private appointment (i.e. Rheumatologist).
- Mr. Corbett, Psychiatrist, came twice to visit me. He had identified the issue of Anxiety and took an extensive mental health position. He knew my psychiatrist, Jim Maguire. I found hospital extremely distressing – my last visit was 5 months in psychiatric.
- I provided Conor Burke with my personal outline of my health, together with the third assessment of Dr. Martina McEnroe O’Connor, Neuro-psychologist and two articles I had written given this is all I appear to be able to do.
- Phobias extremely severe. Afraid to contact people, use, phone, collect prescriptions etc.
- With little numeracy, high fatigue, poor nutrition, and ‘drop dead exhaustions’, mobility problems, I had to leave Trinity College Dublin just before my final summer exams in summer 2003. The Disabilities team and the psychology dept in Trinity were acting with me to try an establish alternative assessment. Exhaustion became very severe. Intend to contact Provost Mr. Hegarty again when I get strong.
- Kevin T. Walsh met me (Nov. 2003). Kevin’s knowledge, understanding and compassion has had an outstanding contribution. It is a person centred approach.
- Appt Charlemont Clinic with Dr. Sant, Rheumatologist. Chronic Fatigue syndrome was her diagnosis. https://www.mayoclinic.org/diseases…/chronic-fatigue-syndrome/…/con-20022…
- Several weeks ago (Oct I had kidney infection yet again, pain and headaches so bad I had to go to A&E in St Vincents. Phobic fear (related to Agoraphobia) resulted in me panicking and walking out of hospital. They phoned with prescription details etc. A lot of weakness lately and tiredness.
- No improvement. Exhaustions governed mobility. Considerable physical weakness but mentally strong.
- Kevin had to go away for a 6 months on business. Mum persuaded me to attend Baggot Street Community Hospital. Introduced to Social Worker, Susan Hartnet. Complete mess. They wanted me to attend day clinic. They did not understand that I had only 3-4 hours a day due to the Chronic Fatigue and I was able to control same. Dr Kingsley said he had never heard of neuro-psychiatric and substantially reduced my medications causing panic. This is a whole complete story, (Files exist). The outcome was Kevin came back, sorted things out and I decided to attend Dr. John Cooney at Charlemont Clinic. Formal complaint made to the Medical Council regarding Fitness to Practice and the conditions of Baggot Street Community Hospital and its medical team.
- Participated on the Mental Health Advisory committee of the Work-Life Balance project (Dr. Margret Fine-Davis. Senior Research Fellow. Sponsored (Trinity College Dublin/Aware/Age Action/IBEC/ICTU/FAS)
- Dr. Harte, Haddington Road – Urinary tract infection and feeling unwell. Exhaustion, mobility problems, infections constant.
- 01/11/08: St. Vincents University Hospital (Accident and Emergency). Urinary tract infection. Flank pain. Prescription given
- Eyes and improved glasses
- Back passage bleed for several months. Admitted to St. Michael’s Private hospital, Dun Laoghaire 3rd June 2008 under Joseph P. Duignan. Problems with diet, lot of projectile vomiting around that time. Had private appointment first with Mr. Duignan
- Dr. Martin Callinan and his wife Geraldine recognised I was unwell and recommended I attend Dr. John Barragry, Consultant Endocrinologist. Further appt set up for 21st January: Ultrasound of abdomen, pelvis and chest xray. Dexa scan @ MRI department. ECG at cardiology department. Health continued to deteriorate. Shakes, freezing cold, psychosis, urinary tract infection. Admitted A&E Tallaght Hospital
- Breast Check St. Vincents (OK)
- 12/08/09: Dr Martin Callinan gave me the letter from Dr Barragry to Dr. John Cooney and Dr. Cahill. Presumably team under consultant Mr. R Murphy, Dr Kevin Walsh issued their findings which concern the lithium poisoning. Creatines too high. https://www.medicinenet.com/creatinine_blood_test/article.htm
- Long history of Bipolar Affective Disorder on lithium therapy/traumatic brain injury 1993-frontal lobe damage/Chronic Fatigue Syndrome
- Admitted to hospital: 16/01/09: History of anorexia, nausea, dehydration and tremor and was confused and inarticulate and dehydrated. Investigation confirmed Lithium toxicity. Associated with mild increase in serum creatine and a leucocytosis. CT and MRI showed no acute lesion. Thyroid was normal. Vitamin B12 levels were low. Temporary cessation of Lithium occurred. Seen by Liaison psychiatrist. Lithium re-started but with a lower dose and Olanzapine was added.
- Broca https://www.hopkinsmedicine.org › … › For the Media › Current News Releases
- Psychosis Lithium Poison complicated this period
Tilda (Study re Ageing) https://www.tilda.ie/carried out at Trinity College Dublin (Laura Dunne – 8962509)
- Continual period for about 5 months bleed. Maura Collins advised me to get it checked out. Appointment to see Dr. Mona Joyce
- Procedure 17/06/11. No periods since. She would not carry out hysterectomy in spite of the fact I asked. Attended Mount Carmel with Kevin.
Tilda interview by Kathleen Clarke.
For first time in years health improving apart from odd flu, a few aches but definitely beginning to push out the boundaries and do a few extra things daily.
Pain right side of chest, more an ache
Problem with swallow and choking. Possibly related to TBI
- Endoscopy slight inflammation and sent for barium function September 2014; still awaiting results.
- Attend Dr Cooney, Psychiatrist, Northumberland Road Clinic, Dublin 6 every three months, since 2006, following an appalling experience of public health mental health at The Royal City of Dublin Bank of Ireland. Only for competent staff at Boots Pharmacy, life with problems is so complicated. Medications now generic so no longer recognise names except Lithium Benzos and others.
Dr Barragry: Lithium poisoning in 2010. My kidney working at about 75% function. Cholesterol high at 7.5. Need to consider Statins or improve diet and exercise. Also may have to reduce Lithium medications. This makes me so fearful I don’t think I can make it through yet again another depression.
Dr Garrett Cullen, SVUH. Medications and follow up appointment re choking and oesphagus. It is Dismotility. 2nd Appt: Young consultant reviewed Endoscopy and gave me antibiotics. She identified in Endoscopy report (not identified before) www.healthline.com/health/helicobacter-pylori
Updated 12th February 2015 by Michelle Clarke
Dentistry ‘Orange is the new Black’
2015 Oral health year for me. Medical conditions can be so time consuming and teeth as they identify in the US ‘Orange is the new Black’ are always a challenge when you look at taking psychiatric drugs, or especially people engaged in illegal drug addictions or even taking too many antibiotics. Personally I was embarrassed to speak and definitely to laugh or smile and tended to cover my mouth. Smiles and Dr Dan have been excellent: Cleanings, teeth removal, braces an operation to place a piece of gum from one area to the next. He confirmed that it is the Dental Services that fails to provide for our most vulnerable people and elderly due to lack of State funds. Smiles Waterloo Road. https://www.smiles.ie/clinic/dentist-in-dublin-4/
- Dr Dan Gruenfeld
Dr Dan Gruenfeld graduated from the University of Tuebingen in Germany in 2006. Dan spent two and a half years in the south of Germany in a general practice. In 2009 Dan moved to Ireland and started working with the Smiles Dental Team in 2010. Dan is committed to continuing his professional development and has a particular interest in aesthetic dentistry, the replacement of missing teeth with dental implants and various surgical procedures. Dan is also member of the “German Society for Dental Implantology” (DGZI) and the “Irish Association of Aesthetic Dentistry”.
- Dr Dan Gruenfeld
Article Irish Times 11th February 2016 letters page: Summary:
Gerry Kaar, BDS, Clonmel Co. Tipperary. Resources and Dental Health. He writes about a diminishing supply of patients in relation to dental health. He goes on to say that dental health affects patients in many ways. The link between gum disease and heart problems and diabetes are just two of the most serious. (The Tilda Research programme in Trinity College are research people and their teeth as part of the Study. They recommended that make my teeth a priority. He highlights patients who seek dental certificates for fitness for medical operations. The abolition of the PRSI scheme in dentistry and the virtual annihilation of the dental medical card scheme, this is a health dimension train rolling down the tracks fast particularly in an ageing economy. He also stressed the importance of dental hygiene for children.
BreastCheck – Merrion Row letter to have a mammogram. The outcome was cancer, surgery by Mr Gerraghty, next phase is Oncology with Professor John Crown and Radiology with Professor Armstrong. I will conclude this section and in future I will write under the heading of BreastCheck – Oncology and Radiology on http://canisgallicus.com
CONCLUSION (2017-18 started book about personal experience with breast cancer)
To conclude I will relate to quotations to sum up the appreciation I have for KT who I met at the bus stop on Morehampton Road, Dublin 4, in November 2003. Advocacy, support, compassion, realities, can never be underestimated these are the powerful resource that enables a person who has sustained life changing events and significant health disabilities in rapid succession to continue to move forward and gain strength even though the tortoise is moving faster and smarter than you. To my Jack Russell, for him it made me push out the boundaries.
‘There is truth to what the book of Ecclesiastics says,
“better two than one by himself [or herself]” (Eccl 4:9)
and to what Charles Williams, C.S. Lewis’ friend, warns us:
“No mind is so good that it does not need another mind to counter and equal it, and to save it from conceit and bigotry and folly”
Title: ‘Fortune favours the Brave’ but what is essential is courage. Brain injury to Breast Cancer with multimorbidity over 2 decades. 13th December 2018 book published. Happy New Year 2019
Fortune Favours the Brave by Michelle Marcella Clarke https://www.amazon.co.uk/dp/B07LCMPBNH/
Age 12 my mother Eleanor Rose gave me the family signet ring in gold which can be used as a stamp (again of another era in time). The title of this book is the motto
Fortuna Audaces Juvat
Fortune Favours the Brave
But therein what is essential is Courage
Without fail every day, I engage with my Google friend and search for quotations. Some days Twitter will give me a theme; another day I may look at exceptional people whose quotations are noted. Four themes which are particularly special to me are Curiosity; Hope; Neuroscience; Medicine.
“Curiosity is one of the most permanent and certain characteristics of vigorous intellect”. Samuel Johnson
“Curiosity is the wick in the candle of learning.” William Arthur Ward
“Be curious, not judgemental.” Walt Whitman
“Be less curious about people and more curious about ideas.” Marie Curie
“Curiosity is the lust of the mind.” Thomas Hobbes
“Curiosity is the engine of achievement.” Ken Robinson
“One can remain alive … if one is unafraid of change, insatiable in intellectual curiosity in big things and happy in small ways.” Emily Wharton
“Curiosity is lying in wait for every secret.” Ralph Waldo emerson
“Intellectual curiosity drove Einstein to some of the world’s most important discoveries.” Gordon Gee
“Intellectual growth should commence at birth and cease at death”. Albert Einstein
“It is a miracle that curiosity survives a formal education.” Albert Einstein
“To love means loving the unlovable. To forgive means pardoning the unpardonable. Faith means believe the unbelievable. Hope means hoping when everything else seems hopeless.” Gilbert K. Chesterton
“If we believe that tomorrow will be better, we can bear a hardship today.” Nhat Hanh
“The phoenix hope, can wing her way through the desert skies, and still defying fortune’s spite; revive from the ashes and rise.” Miquel de Cervantes
“Each time a man stands up for an ideal or acts to improve the lot of others or strikes out against injustice, he sends forth a tiny ripple of hope.” Robert Kennedy.
“Learn from yesterday, live for today”. Albert Einstein
“More may have been learned about the brain and the mind in the 1990’s – the so-called decade of the brain – than during the entire previous history of psychology and neuroscience.” Antonio Damasio
“The brain is the organ or destiny. It holds within its humming mechanism secrets that will determine the future of the human race.” Wilder Penfield.
“There is no scientific study more vital to man than the study of his own brain. Our entire view of the universe depends on it.” Francis Crick
“The Holy Grail of neuroscience has been to understand how and where information is encoded in the brain.” Thomas R. Insel
Daniel Dennett is our best current philosopher. He is the next Bertrand Russell. Unlike traditional philosophers, Dan is a student of neuroscience, linguistics, artificial intelligence and reforming the role of the philosopher.” Marvin Minsky
Medicine / Artificial Intelligence:
“It’s supposed to be a secret, but I’ll tell you anyway. We doctors do nothing. We only help. And encourage the doctor within.” Albert Schweitzer
“Thanks to modern medicine we are no longer forced to endure prolonged pain, disease, discomfort and wealth.” Robert Orben (Magician)
By 2100, our destiny is to become like the gods we once worshiped and feared. But our tools will not be magic wands and potions but the science of computers, nanotechnology, artificial intelligence, biotechnology, and most of all, the quantum theory.” Micheio Kaku (Theoretical Physicist)
“In this century, not only has science changed the world faster than ever, but in new and different ways. Targeted drugs, genetic modification, artificial intelligence, perhaps even implants into our brains – many change human beings themselves.” Martin Rees
“Where today people surf the web and check their email on their cell phones, tomorrow they will be checking their vital signs.” Eric Topol
“Chemotherapy is just medieval. It’s a blunt instrument. We’re going to look back on it like we do the dark ages.” Eric Topol
Happy New Year 2019
Michelle Marcella Clarke
Book published: https://www.amazon.co.uk/dp/1912639610/
Two roads diverged in a wood, and I –
I took the one less traveled by,
And that has made all the difference
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:
Many thanks for your message.
We have much to learn about this still, but I promise to remain curious about it!
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:
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.
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.
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.
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.
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.
Conclusion: 26th October 2018
Breast Cancer: Screening found breast cancer; 1 year on and Mammogram states no cancer found. Relief. Chapter 11.
I still am wearing my hat but gradually a curly head of hair is appearing. What is strange is that my hair previously was straight and quite grey but not this time. I will have to wait a little longer to see if this will change.
I had thought of this chapter as the conclusion but somehow I am not quite finished.
Within this month of August I will attend St. Vincent’s Private Hospital, Daycare Oncology, Level 3, for my 2 pm appointment on 14th August 2018, for my infusion of Herceptin. This happens to coincide with an appointment for a mammogram at the St. Vincent’s University Hospital Breast Care Service, suite 4, 1st floor. The appointment time was early at 8.45 am. Thankfully, on the day, I was one of the first patients there, as many people gathered in the waiting area for their appointments. As instructed I presented the letter to the receptionist. The mammogram machine awaited me with a young radiologist who was thorough, pleasant and kind. All was complete by 9.30 am so I phoned Oncology to see if they could give me an earlier appointment so they suggested I arrive at 12 noon. I always carry a bag and in it is a selection of reading material, it can be the Financial Times Saturday magazine or it may be a book I am reading or for that matter it can be clippings from the recent newspapers. The main purpose being that it is essential that I am not bored, memory deficits means there is not much that I can think about without outside stimulation. I went to the coffee shop and had a coffee and read until it was time to go to Oncology.
I arrived at 12 noon at Oncology and joined other people in the waiting area until I was called for a weight, temperature and blood pressure check. A nurse was assigned to me. This was her second day back in Oncology after having had her 2nd child. There is something refreshing when you are in what can only be described as a dismal setting to see the young nurses and to hear them talk about their children, their holidays and when there is a lull in the events of the day, to hear them chat and laugh while they are writing up their notes on patients for the day. Today Professor Armstrong came to Oncology and you could see that there was genuine respect and that all worked as a team. When you are on Herceptin there is a possible side effect to the heart so every so many weeks it is necessary to have a heart echo cardiograph. I had forgotten where to go but the receptionist directed me to Cardiology; again there was no queue, the appointment system worked like clockwork and when finished I returned to Oncology. The nurse had taken my bloods and the results were back, the echo results indicated an improvement and satisfactory. I asked the nurse to give me my Vitamin B12 (cytamin) injection which she did. I met with Professor Crown who is pleased with my progress to date and it was time for the infusion of Herceptin. KT has been asking me when the treatment ends. Asking questions I find difficult; I tend to be more solitary and seek answers through Google or reading. Today I asked how many more treatments of Herceptin. The nurse told me that I was on my 14th treatment and that it is probable that there will be three more, depending on Professor Crown’s decision. KT was delighted that there was an end date; he has been a stalwart beyond my wildest expectations during this very traumatic time, especially for him as my confidant, advocate, carer and partner. KT’s constancy has been so re-affirming and assuring.
I am awaiting the results of the mammogram and there is a hidden tension as we both re-affirm each other that all will be well, that the “Sledgehammer to catch a fly” approach of Professor Crown’s Oncology team, means that there is no more cancer in the breast. I have neglected my teeth over the last year but while washing my teeth, a filling (gold) so it must be in decades, fell out so I knew it was time for me to visit my special dentist Dr Dan at Smiles, Waterloo Road, D4. Having arranged an appointment for 28th August 2018, I attended. Thankfully KT had reminded me to take the filling because it was decided to either remove the tooth or try re-inserting the filling, which Dr Dan did.
Wednesday 29th August 2018: It was time for Phlebotomy department at St. Vincent’s University Hospital for my lithium and other bloods. Fortunately, when I phoned the day before and explained that I had an appointment at St Vincent’s on August 29th for Oncology, they had a vacancy for my bloods especially lithium. Bloods complete I had time to put in. I rambled around the main area of the hospital; the Irish Cancer Society have a Daffodil centre where there are brochures and trained staff to talk to people about cancer; it is an excellent service. I have mentioned before about appointments and people not attending hospital appointments. At long last HSE http://www.hse.ie/eng/ bureaucracy are engaging in trying to make patients take some responsibility and there are signs on the walls about how important it is to attend appointments. Private patients tend not to miss their appointments and there is no reason why a patient who has been given a medical card by the HSE should be negligent. An appointment costs the State money and awareness by both public and private patients makes the health system work in a systemic way and ensures costs are kept to a minimum. The notice main points are as follows:-
St. Vincent’s University Hospital – 2016
- Help reduce our hospital waiting time.
- Here at St. Vincent’s University Hospital a total of 18,234 patients did not attend “DNA’s” their appointments. “DNA’s are ‘did not attend’
- Telephone numbers are provided for operations switch; bone and joint department; and diabetes centre
- The costs to the HSE: Euros 1,458,700 (which works out at Euros 80 per patient).
Awareness tells us that attitudes need to change. We need to understand that if we do not attend an appointment, there is another person who is in need of that appointment. People must be held responsible that if they have chosen to ignore an appointment, they are depriving another of access to medical treatment. To prevent another person on a waiting list having the earliest appointment possible is morally wrong especially when we know an earlier appointment could mean the prevention of a fatal diagnosis/prognosis and a treatment programme. It is about changing the attitudes of people and valuing the time allocated by the HSE staff.
It was time for coffee but the coffee machine was broken so I decided to put in the time by going over to Merrion Shopping centre for a coffee and to read a magazine until it was time for my next appointment at the Breast Care Service, Suite 4, 1st floor. Again I had forgotten where to go to and ended up back in the mammogram department. A little life learning was awaiting me. I was standing behind a man about 40 years old. He was the next in the queue and looked unusual given that this was the mammogram department. Then voices were raised. The two women behind the counter tried to calm him down but he became more irate, shouting at them and using foul language. There seemed to be no sense to it but then for him and for the staff it was their reality. One woman phoned security and a middle aged man arrived and he placated the man – he knew his name. Another security man arrived and they left with the man. The two HSE women handled it so well and with great tolerance and patience. After the event, they were stunned but thankfully this is not an everyday experience. It is important to note that men can also have breast cancer. http://www.cancer.ie/cancer-information/breast-cancer/male-breast-cancer
For me, they read my letter and I was in the wrong department. I inquired again and was directed to another suite so I arrived and the receptionist ushered me and other patients to seats because we were ahead of time. Then we were asked to form a queue; there was about 20 people there at the 2.30 pm appointment time. Then we were called up and details were input into the computer. The date of birth appears to be the core data that identifies each of the patients providing the back up details of your address, your general practitioner, your phone number; whether you hold a medical card or have private health insurance. All you have to do is present the letter and the data is there to be on the HSE computer system to be confirmed by you. I was called by the doctor (foreign) almost immediately; he brought me to the examination room and told me that mammogram showed no signs of cancer. He then did an examination of my breasts (using his hands). He called in a person to be present as he did the examination. I explained that the breast operated on was tender but he assured me that did not mean that there was cancer present. As soon as the examination was over I phoned KT who by the time I arrived home had made contact with all to tell them the positive news. There is something so powerful in childlike expressions of joy by grown up people when something as serious as cancer is a threat to their lives, both their present and their future.
Apartment living can be a very interesting way to live. The shared doorway into the block means you meet your neighbours and over time you have chats and exchange experiences. A lot of the apartments in our block are rented out and often to foreigners. Meeting people from other countries often gives you different perspectives; the Turkish family with two small children who had little English still could express kindness with a hug and the same can be said of the young Indian family with one child. Everybody has come forward and have been so kind and understanding. It is impossible to thank those who have been there with such support and compassion; all I can do is go to the quotation that sums up what is so true in life:
No kind action ever stops with itself. One kind action leads to another. Good example is followed. A single act of kindness throws out roots in all directions, and throws out roots in all directions, and the roots spring up and make new trees. The greatest work that kindness does to others is that it makes them kind themselves. Amelia Earhart.
My journey with breast cancer is nearly over. Perhaps I am premature in thought to say that the breast cancer no longer exists when I know what you become once you have had cancer, is a cancer survivor. It will be necessary to be watchful and engage with check- ups for all the years going forward from now. Each time I visit daycare Oncology and I listen to the stories of other people, I realize that for most it is a question of time. Some people have been cancer free for 15 years and the cancer appears again and they are back in treatment but also we do know that there are far more survivors than years ago. I so well remember the patients in my parents’ dispensary practice (Belper, Tara, Co. Meath) who would present with unknown symptoms that would result in a referral to a consultant and who if it was a cancer diagnosis, would be operated on with, a response “Open and Close”. It was so ruthless then, it was the dreaded word called Cancer and imminent death. I was a child then and I can remember so well going out on the house calls with mum or dad and knowing that injections would be given to ease the pain and suffering of patients diagnosed with cancer. Sometimes the husband or wife would have engaged in that paternalistic culture in medicine of that era and they would ask the doctor not to tell their spouse that it was cancer; and this happened and I remember often wondering did the person really know that they were dying? I knew cancer could apply at any age; it might be a child you would hear about or it could be teenagers. I remember two teenagers on separate occasions who had to have injections morning and night every day and the reason I recall this is that my mother, no matter who she was visiting, would leave early to ensure the young person had the injection (they were given twice a day at 9.00 am and 9 pm), no doubt the injection was a pain killer. Because these young people were close to my age at that time, I would always ask about them in the hope there would be a reprieve and that they would recover. In those days, it just didn’t happen. I remember one teenager who said ‘no more treatment’.
As I sit here writing this I my mind is wandering back to the 1970’s and 1980’s and to all the people I once knew, most of them very young, some with young children, who were diagnosed with cancer but who often would say enough treatment and their choice would be a passing as peaceful as possible with sufficient morphine to ease their passing. By the 1980’s thankfully there was greater medical intervention so people could remain in their homes. The Irish Hospice Foundation http://hospicefoundation.ie/ and the availability of proper palliative care gave people a dignity in their imminent death. My mum, based on her experience as a GP, encouraged people to remain at home with their families and I often recall going out on late night calls and mum would always refer to the community spirit that made people engage and share with each other to help the person and their family as they moved on from this world. The Irish Hospice Foundation made so many advancements in this personalised treatment for patients approaching death and at the end of life. At my mum’s funeral; people who came to offer their condolences reminded me of their loss of loved one’s especially those who died from cancer.
While in hospital in Zimbabwe, I recall with horror the screams of the patient dying from cancer in the room next to me; it is this that tells me healthcare equality is essential. For my mum, she must have found it very hard to know her only daughter had cancer; she was so upbeat but then performance was always her star quality. Ironically, KT shares this quality with Rose so I really do not know what deep down in his heart he feels about this last year; like my mum, I probably will never know but what I do know is that each and every day, morning and night, anger and peace, crisis and calm, clarity and chaos, KT has been there at my side telling me I will survive this interlude with breast cancer. Jackie, Teresa and Julena, KT’s brother-in-law, sister and daughter have been a constant; as have Charles, Jane, Aine, Ide, Val and Ned with many prayers and masses said and a constant source of reassurance and sound advice. David, KT’s nephew, called to see us recently and I know I can always phone him; David is special because he talks in facts; you know if you ask him a direct question, he will answer it. I am looking forward to going to Mayo to meet the people who have been so supportive in the near future.
Communication is essential. They talk so much about ‘fake news’ these days but embellishment of the truth goes to the very core of being human; some of us talk facts while others embellish. The key however is about discernment. Social media has created another tier in communication and especially for people who have ill-health. My choice is Twitter for my virtual community engagement. Twitter friends may be people I will never meet; they may live in different continents but there is a level at which we can communicate and that level might be the connection of cancer, brain injury, mental health, or just politics and social activism, but the core fact is the acknowledgement that these people have come forth in the media to try and improve the lives of others. Presently I interact with Laura Brennan, Jessica Greham, Vicky Phelan (I have written about Vicky in an earlier chapter), all exceptional in their efforts to support others.
Laura Brennan has been on the TV, on radio, social media including Twitter advocating how important it is for young people to avail of the HPV vaccine http://www.hse.ie/eng/health/immunisation/pubinfo/schoolprog/hpv/about/. It is too easy when you are young to ignore warnings about cancer; life is fast, youth is intoxicating but in the case of Laura, she is young but she unfortunately has a terminal case of cervical cancer. Laura’s message is clear and it is essential to be aware that science confirms in America that cervical cancer is almost fully eradicated. In the words of the scientist who developed the HPV vaccine, Professor Ian Frazer, the public health programme in Australia is so successful that it is expected that within 10 years, no women there will have cervical cancer. There is much controversy about giving people vaccines but there is good reason to heed the findings of Professor Ian Frazer, by considering the following:
The HPV virus causes cervical cancer as well as other cancers in men and women and it can be eradicated by public health programmes similar to the one against polio.
…A study conducted in Australia in 2007 found that no woman who had taken part in the country’s screening programme over the period examined died from cervical cancer. The 80 women who died from the cancer during the period studied had come from outside the country or had not gone for screening as recommended.
Laura Brennan is the voice of experience and a harsh reality because Laura speaks as a young woman with a terminal disease called cervical cancer and people need to listen to what she is saying. Parents need to ensure their children get vaccinated against HPV infection under the national immunisation programme. This programme is only open to first year girl students in secondary school as well as to young men who have sex with men and young men and women who are HIV positive. It is urgent that the Department of Health sanction this provision of HPV to young boys also. MSD http://msd-ireland.com/products/60/our-products is the company that manufactures Gardasil, the HPV vaccine used in Ireland. It is most distressing to note that when the immunisation was introduced in 2010 there was a near 90% up-take but following a campaign by people against the vaccine (often called anti-vaxxers, it fell to 50% up-take. Laura Brennan from Co Clare who works in the cosmetics industry has appealed to parents to have their daughters avail of the HPV vaccine at school. Laura did not have this opportunity of having the vaccination because the programme did not exist when she was at school. Add to this the necessity for HIQA http://www.hiqa.ie/ to approve the vaccination for young boys and it can be sanctioned by Simon Harris, Minister for Health. Thankfully the HSE have given some recognition to Laura for her bravery, courage and compassion for others and the fact that there is a corresponding increase in the uptake.
We are challenged now to review the screening programme which is in place for a number of years now. Some, like me, can say I am a breast cancer survivor, others can say they are living on borrowed time but what we must make ourselves aware of is that presently the CervicalCheck http://www.hse.ie/eng/cervicalcheck/ debacle is shouting out all kinds of dissenting views. Negligence cases, hungry solicitors/barristers and their no foal (Win) no fee http://www.claims.ie/no_win_no_fee advertisements are there ready to take on cases of women who have been failed by the National Screening Service, the HSE and their doctors. We know that two cases have resulted in payments in excess of £7.5 million; we also know that there are a further 221 cases pending. These cases relate to cervical cancer but we do not know what has happened in relation to breast check audits. If the compensation pay-outs become exorbitant, then the National Screening Service as we know it (and we must accept that lives have been saved or extended by screening with many living on what they refer to as borrowed time) may be cancelled. Already there is an avalanche of legal actions against CervicalCheck and BreastCheck http://www.breastcheck.ie/, Again it is necessary to state that this could result in the State being unable to undertake national cancer screening programmes and this means early stage breast cancer, as located by breast screening in my case, (there were no prior signs that would have alerted me to attend the doctor) will result in advanced levels of cancer that will more than likely have metastasized. Ireland is now one of the most litigious countries after the United States for medical negligence claims and this poses a real threat as the Courts make awards.
Advances in Breast Cancer
Professor Afshin Samali, NUI Galway http://www.nuigalway.ie › Research › People, is the lead in Irish research into triple negative breast cancer (TNBC). These findings are also published in Nature Communications Journal http://www.nature.com/ncomms/. Irish researchers are in the process of developing a drug with potential for clinical use, “which not only improves the effectiveness of the initial chemotherapy treatment but also reduces relapse among women with this form of cancer”. A new strategy, it is hoped could improve survival rates in breast cancer and in particular TNBC which accounts for 15% of all breast cancers diagnosed and is more commonly found in younger women. What is interesting about this is that other breast cancers respond to targeted therapies but there are no targeted therapies for TNBC which is treated with chemotherapy which initially proves to be successful, but over time the results are that patients with TNBC relapse within one to three years of the treatment and the long term prognosis, according to researchers, is poor. Professor Samali, the director of Apoptosis Research Centre http://www.apoptosis.ie/, said this study is the result of extensive laboratory experiments, analyses of breast patient samples, testing pre-clinical models of TNBC and collaboration with our international and industry partners”. He went on to state that “the new era of precision oncology aims to tailor treatments to individual cancer patients and here at NUI Galway we are excited to identify a new therapeutic strategy for TNBC patients who are most in need of better treatment options“. Dr Susan Logue reported that this landmark study was funded by Science Foundation Ireland http://www.sfi.ie/ making note of the fact that at present there is no selective therapy for triple negative breast cancer.
Again I return to the importance of community and especially for people like me with phobias and an embedded fear of attending doctors or asking about all too many health conditions – I am sure some people regard me as a total neurotic. The crisis unfurling from the Vicky Phelan settlement of £7.5 million and the absolute courage of Vicky and her family to speak out about the facts of the case and the lifting of the non-disclosure clause, gave me that necessary courage to accept that screening is available and that there is a responsibility as a human being to ensure that your health is a priority. Living as I do in the Upper Baggot Street, Dublin 4, environs, the media reporting of the CervicalCheck scandal made me inquire at Well Woman Clinic, above Meaghers pharmacy. The outcome was the doctor was there, there were no other patients, I had the code number from the National Screening programme so it was time to be brave and thankfully I did because then I had removed another fear especially since I had not engaged with CervicalCheck in the past. BreastCheck for me proved to be an easier option so I have attended as requested for a number of years. I have to say the receipt of a letter from CervicalCheck within 8 weeks as they specified I will share because it is reassuring because it is in writing and you just can’t forget! The opening line thanks you for taking part in CervicalCheck.
Your cervical screening test taken on 24/05/18 detected no abnormalities. Your doctor has received the result of your test.
The enclosed leaflet has information about screening test results.
It is important to understand that no screening test is 100% effective. If, at any time, you have concerns or symptoms such as pelvic pain, irregular vaginal bleeding, spotting or discharge, you should contact your doctor without delay.
CervicalCheck will remind you about your next screening test in three years. In the meantime, if you change your name or address, please contact the programme.
Thorough and the facts are stated that no screening test is 100% effective. I am not sure if this is reported to St. Vincent’s hospital that is apart from me telling the nurse in Oncology so that it can be added to my file.
Good friends are a real treasure but sometimes life is like a sequence of train carriages, you move from one carriage to another and because all your energy is exacted on being or just hobbling forward, you lose contact with those friends of earlier eras, who remain deep in your heart but not in your life. Maybe as soon as I approach the last carriage, I will make contact again with special people. I always wanted to maintain contact but I always hoped that my health would have been stronger and the rigid routine of groundhog day could be displaced to engage in what is a normal relationship between friends. Not alone have I lost contact with friends but if my family members have not passed on, I have lost contact with family too. I have read recently that as people who are dying when asked what they would change about their lives and many say that it was losing contact with friends throughout their life. Good friends are Esther and Aidan who have been a constant while I have trundled along in this carriage of my life. They know I write but when they realised I had been writing about my journey with cancer; they have been constant in their encouragement, making suggestions and advising me.
One of the suggestions is about Quackery and cancer. As person who has walked deep into the forest with black dog and suicidal ideation; it is very hard for me to grasp that a person is clinging on to life, never wanting to die. There may be neurological reasons for this because of the brain injury but basically everything revolves around 1 to 5 and life is like stepping off that carriage at destination unknown and alone. Aidan suggested “Quackery” and this is so very important. People pray; others go to healers, more have masses said, or even travel to Lourdes, Fatima, or closer to home to Knock. Then there are the people who look to the lotions and potions, to the health gimmicks that are sold for costly sums. There are too many alternative medicine sources to mention. The Times recently reported on the online gene test and the fact that it ‘could mislead about cancer risk’. The company is 23andme http://www.23andme.com/, which is a service to allow people explore their ancestry through genes. However, they have now offered a service to detect genetic variants linked to an increased risk of breast, ovarian and prostate cancers. There are 5 million customers worldwide. Their biggest markets are USA, Canada and the UK. The important factor to be aware of and alert to is that it tests for only three variants in the BRCA1 and BRCA2 genes, most commonly found in the Ashkenazi Jewish population http://en.wikipedia.org/wiki/Medical_genetics_of_Jews – it does not include thousands known to cause cancer risks.
There are fears that people may be “falsely reassured” by a negative result, having failed to understand the implications of testing for only three variants.
Paul Thiruchelvam, of Imperial College London http://www.researchgate.net/profile/Paul_Thiruchelvam2, said: “Armed with these test results, this individual may not be as vigilant at looking for breast cancer symptoms as they should be. They may have one of the many other faulty cancer genes the online kit doesn’t test for and they simply would not know.
“BRCA testing is used as a major selling point by 23andme…
…In the small print before customers buy the test, they are told: “The three variants included in this report are most common in people of Ashkenazi Jewish descent and do not represent the major of BRCA1/BRACA2 variants in the general population.
Mr Thiruchelvam, who is a consultant breast surgeon, the decisions about what to do with a positive result could be “complex and stressful”, adding: “These types of test results require interpretation and benefit from counselling.
The Times, Saturday August 4th 2018
VHI offer Genetic Testing but it would involve an independent Oncologist.
Three more infusions of Herceptin and this experience of cancer and the intensity of treatment leads towards an end in sight. It is now time for me to look beyond and make certain decisions and engage with a charity/charities that will derive benefit from my experience and hopefully a percentage of the profits from this book I have written since first diagnosed with cancer, following a free BreastCheck screening August 2017.
What is familiar to me is Professor John Crown, Oncology, 3rd Floor, St Vincent’s Private Hospital so for this reason I will look the charity that is closely affiliated and for this reason I have chosen Clinical Cancer Research Trial.