3rd July 2018: Time again to attend Oncology at St. Vincent’s Private Hospital, Dublin 4. Mum was constant in her advice which was based on over 60 years practicing as a doctor (GP) that the only way you can deal with a cancer diagnosis is to be positive. My Mum was acutely aware of my mental health history and how it had caused much illness and anxiety in my life. A wise doctor who I meet out walking and of the same age as my Mum gave exactly the same advice – the message is the importance of being positive at all times when you have cancer Thankfully there is a good team around me. I regularly attend my psychiatrist, John Cooney, my GP Dr Peter Cahill and the constant in my life which helped me most when phobias and anxieties made interaction so difficult, Boots Pharmacy, Upper Baggot Street, and especially Seana. Khalida and other members of the staff are also aware of my complex health need and are able to negotiate on my behalf to ensure that I have my medications in a blister pack, that I am reminded every three months to get my prescription and since I have been diagnosed with cancer, they have been exceptional in how they have helped me cope with the medications especially during the period I was receiving chemotherapy. I must also add that Professor Crown, Professor Armstrong and the Oncology team, especially the nurses assigned to my case every three weeks have been professional, kind and caring.
Maria was the nurse assigned for the 3rd July visit. She took my bloods and waited the return results before giving me the Herceptin infusion. Thankfully there was no problem finding a vein. The usual filling in of the chart was completed and I added that my hands had developed an orange colour, as a symptom. Maria had never heard of this and I explained that I had checked up with Dr Google (she was not impressed with this) and I told her about my kidneys working at 70% and that orange hands can relate to this. It was decided that the bloods would check up on the kidneys and later on after I had met with Professor Crown, Maria asked me if I had mentioned the matter to him and then she told me my kidney bloods were normal. I was asked if I wanted to meet with Professor Crown and I said yes. I then went to the corridor where people sat waiting to be called into see him. I was prepared with my list (not my bucket list yet). I started the conversation by congratulating him. I had a little piece from the Irish Examiner newspaper dated 15th June 2018 which he read. His humility explained this was a new venture: The details
Professor John Crown has been appointed chief medical officer with OncoMark http://www.oncomark.com/ at NovaUCD http://www.ucd.ie/innovation/, the producer of a prognostic assay for early stage breast cancer. A consultant medical oncologist at St Vincent’s hospital, he has published in clinical and translational breast cancer research. He graduated from UCD Medical School 1980. He trained in general medicine in Dublin and London. He trained in oncology in Mount Sinai Hospital, and became a specialist in breast oncology in Memorial Sloan-Kettering Cancer Centre, New York. He has led St Vincent’s oncology programme and was founding chair of the Irish Cooperative Oncology Research Group http://www.imagenow.ie/projects/cancertrialsireland
Having followed Professor Crown on Twitter long before I ever met him, in fact when he was in the Senate, I am including NovaUCD with Twitter as its entree to what NovoUCD is about. Twitter @NovaUCD and @ProfJohnCrown
Diagnosed with cancer – the unknown prevails leaving you vulnerable beyond comprehension (except for depression which I personally have found a far more harrowing burden to experience) than this diagnosis of breast cancer. To read the above piece about Professor John Crown re-iterates that Ireland has some of the most qualified professionals in medicine and we should never lose sight of what this means to Ireland as a country.
The list:– I started with the orange hands. Professor Crown did not dismiss it but professionally examined both sides of my hands and checked my eyes. He was satisfied that nothing was wrong and that maybe I was eating too many carrots! I then mentioned about my cholesterol being high and that it was recommended I start on Statins. I explained I did not want another medication and feared that once taken I had to continue for life. He reassured me many people take Statins and there are no real consequences to fear. He said to consult with my GP. The outcome is I am going to be taking Statins also. The next question was about “Dense Breasts” – something I had found out about on the Twitter. Again, reassurance. This is relevant to younger patients. As for the lower back pain, I don’t need medications, it is more an ache and relates to being tired, so this concluded the list. I spoke with the Nurse who shares the office with Professor Crown, I explained I met Elinor and that I was really delighted that this was her final day. I explained I had known Elinor since she was a young child and that she stayed with me in Zimbabwe, a long time ago, in what I call another life. There is no need for Professor Crown to remember my name because he knows that communication will be a constant via the Twitter machine so he ends the conversation always with I will see you on Twitter.
There is something so grounding about Oncology, 3rd Floor St Vincent’s Private Hospital. You are encouraged not to seek out other people with cancer and there is a good reason. The short period of time in Oncology, there are a few opportunities when you get to talk to other patients. What you very quickly realise is that cancer is not simple, it cannot be cured, it can go into remission and you will meet some patients who have had remission for twelve years only to wake up one day and find the cancer has returned http://www.cancer.gov/types/metastatic-cancer
The woman in the chair next to me was 75 years old; she had an operation three weeks prior to this visit and was due for another operation in the lymph glands in the next few weeks. She and I do not know her name had a 12 year remission. The woman I met while sitting in the corridor awaiting my visit to Professor Crown had gone for her 12 year check-up only to find that there was more breast cancer; but this time in the other breast. The significance of this is that it makes me think I am destined to the remainder of life as a neurotic thinking that every ache, pain, skin change, headache, is registering that cancer is prowling and tumours are lurking looking for opportunities to manifest yet again.
This week I met with Dr Cooney, Psychiatrist; I explained about the Oncology psychologist at St Vincent’s Private Hospital on the advice of the Oncology nurse. It was decided by both me and the psychologist that I had what I call the Groundhog day routine and that it worked to such a degree that I forget that I even have cancer each day. Dr Cooney reviewed the medications and as Dr Martin said to me when he met recently ‘you are doing so well, make sure you keep taking the medications and especially the lithium’, it was decided to maintain the medications and add statins. My next appointment is scheduled for November 2018. I am confident if there is any crisis period for me I will have the back-up from Dr Cooney and I am aware that he understands totally the complications of being bipolar with traumatic brain injury and acute anxiety and now being treated for breast cancer.
The Will? The Will to live – I have written about this in the past. Then there is the Last Will and Testament. I can clearly return to my leaving certificate year in 1976, a year of turbulence and fear. The fear was the secret that could not be discussed but the fear that said be brave, be a confidante to each parent but never to both because in unison was not possible. My memory is like this. Dad was no doubt doing his house calls and we were returning from Dunshaughlin, our nearest village, where Dad could buy his miniature Schimmelpennick cigars (Mrs Murphy always made sure to have them in stock for him and of course his newspapers, magazines, and on rare occasions she had his favorite Heinz tomato soup). The dispensary system of medicine meant a considerable amount of driving and in those days dispensary doctors called to people in their houses because most people did not have a car. I worried a considerable amount about my father’s health and I could see that he was troubled but there was nothing I could do to change his life but that did not stop my relentless worrying, which in retrospect I understand was an extreme anxiety disorder that should have treated.
It was a fine day and we were driving towards Dunshaughlin, Dad was driving his blue Audi car XAI 661 which he was so proud of, an indication of a prosperous ascent from being a publican’s son to being a doctor. As we passed Murnane’s (1963 Dr Murnane retired and my father was appointed to the dispensary practice and the dispensary residence at Belper, Tara, Co. Meath) Georgian house on the main road, my father turned to me and said it was time for him to make a will. I can remember the panic this instilled in me and I recall vividly pleading with him to forget making a will and what it implied as he was young and he was not going to die. Yes, he did die in October 1977 and he did not leave a will and testament. This meant he died intestate. One Third would pass to his children and two thirds to his wife.
The Will 2018: Let me sum it up in a brief sentence. I being one of 2 children, the eldest, according to my Mum’s solicitor, am not entitled to view it. KT encouraged me to get a solicitor to act on my behalf. Three letters from him, a phone call, eventually this week (7 months since my Mum passed away) my Mum’s solicitor wrote to me stating that he was under no obligation to provide me with the will but that he was making a concession. I am excluded in that a Trust will protect me for 20 years. I have said before that my Mum met me each week at the Westin hotel, near Trinity College Dublin, and that I was not invited home for over over a decade. Perhaps, my Mum Rose, the doctor with much experience, knew best because her decision was made long ago and to be fair maybe she did not want me to recall what was once my home and haven in times of deep depressions. Her home passes in its entirety to my brother from whom I am estranged. So like my memories of recent times; all that is of my pre-accident memory of my home, is swept away with the dash of a pen and a signature that says ‘you need no memories of your home, of your Father, or of me. It then goes on to say in 20 years time, if you happen to be alive, no provision is made for you, it is my son and his five children.
Liz a family friend, again from another life, passed away 1st October last year. The strange thing is I had a list and Liz was first on my list to make contact with but I am such a procrastinator, I have failed over decades to keep in contact with old friends. My mum knew Liz since she was a small child and it was only a matter of time when we would both meet up with her but alas this did not happen. Today I met with Paul, Liz’s husband, who so kindly came to the rescue on January 1st 2018 and brought me to my Mum’s funeral. Kindness is so important and Paul through the decades I have known him remains kind. We talked about mourning and the stages of grief. I always believed that part of the grieving process of a child for their parent or a wife or husband in respect of each other, is to have access to their personal belongings so that if they choose they can give items of sentiment to friends and family or just immerse oneself in their reality of the now and reminisce and cry and this is part of the purpose of mourning the life of a parent, loved one, spouse, child. Paul spoke so affectionately of a gift he bought for Liz of long sleeved gloves and a handbag; he had given to this to a lifelong friend of Liz, only last weekend.
24th July 2018: 2 pm I arrive at Oncology. It was busy. I felt relieved that this time I had no list of questions and that apart from fatigue, I was engaging in a positive way with life in general. I even lost a little weight now at 78 kg so hopefully this will continue. Professor Crown met with me and he is pleased with my progress. I have started on statins (high cholesterol) and notified them but completely forgot to mention that I had the cervical cancer result as normal. It was a busy day for the medical team. A few of us started discussing hair. One woman wore a wig; another woman her hair was long and it had grown back – me I am still wearing a hat although my thin hair is re-appearing and now covers my whole head but there seems to be little growth yet that would suggest going to a hairdresser. All went well. There was no difficulty finding the vein and Donna (from Donegal) with such a positive attitude was my nurse for the Herceptin treatment.
26th July 2018:- As I am writing I am listening to the powerful voice of Ella Fitzgerald which takes me away from dwelling on a situation over which I have no control and back to what is important and that is maintaining the Will to Live. Curiosity and being stubborn are two traits that are deep down within my being. I continue relentlessly to seek answers and of course Google and now I have discovered Google Scholar, these provide endless connections and possibilities.
Neuroscience is forever seeking and finding answers and today a TED talk led me to what could be a very valid reason for why a person who sustains a traumatic brain injury would try to describe to people that they have no imagination. Today, I know Aphantasia http://en.wikipedia.org/wiki/Aphantasia was name chosen and defined to explain this in 2015. This is of major significance to me because I am aware that I once used to visualise and most definitely had an imagination but became extremely frustrated after traumatic brain injury blaming memory deficits for removing the ability to imagine. Absolutely unknown to me, the condition Aphantasia was named in 2015 by Professor Adam Zeman, Exeter University, UK. http://psychology.exeter.ac.uk/staff/index.php?web_id=adam_zeman Daily I listen to TED talks or TEDMED and thankfully today on a random selection in my virtual world of reality I was introduced to this remarkable young woman Tamara Alireza http://www.youtube.com/watch?v=arc1fdoMi2Y who explains what this condition (now named Aphantasia) is and which in my case, 20+ years on from when I fractured my skull, makes me so relieved that it is not a craziness in my head but a reality that I can learn to work around and accept. Now there is a sound reason to review deficits and a good place to start is why I am so afraid of the dark and the answer to this is apparent (I can’t visualise images; not even for counting sheep) http://www.nrtimes.co.uk/single-post/2018/01/24/When-the-brain-cant-visualise. My mind needs to be engaged during the day because I can’t day dream. I need sleeping tablets at night having spent day reading, writing or engaging with Google. Twitter has been an essential component of helping me cope with memory deficits and lack of holding an image in my ‘mind’s eye’. Now I know what this condition is and it is yet another component part of the traumatic brain injury and how highly individualised each head injury is in how it affects you. I have made contact with Professor Adam Zeman but no doubt this man will have so many emails from people that a response is unlikely.
I may not be able to visualise but I was thrilled to read an article by Sylvia Thompson, Irish Times 2nd August 2018 http://www.irishtimes.com/…/how-tuning-in-to-music-can-stimulate-the-brain-1.3575… about how tuning into music can stimulate the brain (back in my era I am listening to Aretha Franklin, who passed away just recently, Chain of Fools). Yes it is my personal experience that music is a powerful asset and is a means especially in the case of traumatic brain injury of connection and therefore an enhancement to alter cognitive decline. Trinity College Dublin I regard as part of the nucleus in relation to my progress. I started in Trinity College Dublin as part of a research programme funded by Horizon EU Aware and Trinity College Dublin (Dr Margret Fine-Davis and Dr Mary McCarthy). The research was about women who had depression and their re-integration into society. Having been accepted into Business Economics and Social Studies, I struggled with much ill-health and all I can say is that I may not have received the Degree in 2003 but what I had was a true education and am a firm believer in lifelong education and especially for people with dementia or brain damage to prevent cognitive decline. I was in Trinity College Dublin from 1996 to 3003, a long time, add to this lectures I have attended and the lectures at The Long Room Hub http://www.tcd.ie/trinitylongroomhub/.
I am a lifelong student of Trinity College Dublin but without qualifications. My favorite song is Summertime and as I write I listen to so many versions on youtube and all I know is that it deeply resonates in my mood and emotional and creative state.
To quote Sylvia Thompson, Irish Times.
Music and memory is the research interest of neuroscientist Dr Catherine Jordan http://www.gbhi.org/catherine-jordan/ who is an Atlantic Fellow at the Global Brain Health Institute http://www.gbhi.org/ in Trinity College Dublin…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.
Jordan is keen to develop a network of researchers, music therapists and performing musicians to develop evidence on the links between music and memory in Ireland.
“Research into music and the brain is well established in other countries but it’s a new research area in Ireland,” she notes
The last few lines is pure music to my ears (one of which is completely deaf as a result of a fractured skull). It explains the absolute excitement in my head if I am at a concert and I recognise the music and this is what draws me to Grafton Street to listen to the musicians play.
I suppose it is a social activism or willingness to engage in the everlasting search for answers that is my driving force and having had very deep depressions and generalised anxiety states, I need prompts to state life is not just one black hole when your eyes are closed and there is no other world to engage with or in. I have written so many emails to minsters, senators, organisations, concerning mental health, suicide, social injustices, politics over the past 2 decades. I can reassure you on my gratitude list at night I am so thankful the traumatic brain injury happened at that time in my life when I knew how to use the computer and then all I have had to do is adapt and engage. Twitter is my daily engagement with augmenting my memory and making it possible for me to have conversations with a little knowledge about the news in the world around us; it basically up-skills those memory deficits to engagement within the day in world affairs. Twitter and my adaptation of it is my route to Artificial Intelligence.
Another neuroscientist who I greatly admire is, Oliver Sacks, who sadly passed away 30th August 2015, from metastases of liver cancer but thankfully he lived to his early 80’s. Again this man explored the brain and much of his research involved music and images. I would highly recommend his interviews on youtube; his books and for people who are facing a terminal cancer, I would suggest reading his letter in the New York Times http://www.nytimes.com/2015/02/19/opinion/oliver-sacks-on-learning-he-has-terminal-cancer.html?_r=1
To quote a wise medical veteran with cancer:-
I feel a sudden clear focus and perspective. There is no time for anything inessential. I must focus on myself, my work and my friends. I shall no longer look at “NewsHour” every night. I shall no longer pay any attention to politics or arguments about global warming.
This is not indifference but detachment – I still care deeply about the Middle East, about global warming, about growing inequality, but these are no longer my business; they belong to the future. I rejoice when I meet gifted you people – even the one who biopsied and diagnosed my metastases, I feel the future is in good hands.
I cannot pretend I am without fear. But my predominant feeling is one of gratitude. I have loved and have been loved; I have been given much and I have something in return; I have read and traveled and thought and written. I have had an intercourse with the world, the special intercourse of writers and readers.
I have to say that if face a similar diagnosis and imminent passing; I hope these are the words on my “In Remembrance” card.
The Will to live takes on another meaning in the light of the scandal that is to engage Dr Gabriel Scally in the Scoping Inquiry which has been postponed in finding why women were not notified about cervical cancer smear test results. Dr Vicky Phelan could have decided to take the silence choice as to the settlement of her case against the HSE and US laboratories but she recognised the negligence and as a person felt she had a duty to other women who received incorrect readings in their cervical smears. To date there are over 200 women awaiting financial settlements. The Government acted in haste and said these vulnerable and sick women would be granted mediation and the appropriate settlement, yet each week we hear a new name of a woman battling the lawyers engaged in our adversarial legal process in the courts. The Screening Programmes are in jeopardy. The bottom line is do they save lives? Do they grant borrowed time? Do they provide opportunities for innovation to provide better treatments? Equity and balance are relied upon and we must place trust in the system.
A health system needs to work efficiently. A letter arrived from St. Vincent’s University Hospital notifying me of an appointment in their Breast Clinic, the Consultant being the Breast Care Service. Normally the letter comes from BreastCheck every two years but once you have been diagnosed with breast cancer you attend the Breast Clinic in St. Vincent’s University Hospital every year. The letter states your chart number in bold print and ardently tries to ensure you engage with the system with the note Appointment Queries and a telephone number. You are told to produce the letter to the receptionist within 15 minutes before your appointment time.
Thankfully the media have become alert to waste within the HSE and have highlighted that in 2016 as much as a £22 million cost to the State resulted from people failing to turn up for appointments. February 18th 2018, the Irish Examiner https://www.irishexaminer.com/ireland/479000-outpatient-no-shows-last-year-466843.html revealed 479,000 outpatient “no-shows” for the previous year. It is so simple to be slip shod and not turn up to an appointment; and it happens too many times. Waste is a chronic disease in its own right but the system can be changed with the will of the people and the HSE’s administrative abilities. As stated before this letter clearly states that if you cannot make the appointment that you phone the highlighted number. It then puts the onus back on the patient that if you cannot attend the appointment then it can be made available to another person who is on a waiting list. We are all too aware of the crisis in our A&E’s and the waiting lists; some people and children having to wait for years for an appointment at the outpatients clinic. Sensibly they further state that if you do not attend your appointment, you may be discharged back to your referring doctor. At long last there are limits being imposed to bureaucratic chaos leading to long waiting lists for patients who are in need of care, with the responsibility being placed on the patient to be diligent and caring towards other people who are on hospital waiting lists. To endorse this they also have a system of reminder texts which will be sent to either your phone or that of your partner or carer.
My experience: I phoned the number. A very pleasant foreign woman suggested that I re-arrange the dates of my two appointments so that I would have the mammogram first, which I arranged to have the same day as my Herceptin infusion, followed by an appointment with the Breast Care team to give me the results of the Mammogram. These two appointments are in August but I really did appreciate it when she established that the appointments would be better suited with the mammogram first followed by the appointment with the Consultant. This is common sense and it works.
Curiosity as a trait in the age of digital greatly improves a person’s attitude to their diagnosis of cancer. The Will in itself is such a strong word that gives hope. The Will is about strong determination which in another way is enhanced by a positive outlook. To conclude this chapter I will quote from Elisabeth Kubler Ross because this quotation entreats us to understand the power of words especially when our bodies may be weak and our minds fatigued.
The most beautiful people we have known are who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concerns. Beautiful people do not just happen. ~ Elisabeth Kubler Ross
Respect is another strong word but it withers in the society of today.