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, 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.
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 younger patients. As for the lower back pain, I don’t need medications, it is more and 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 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. 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 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 and at that time the proceeds of the trust will pass to my brother and if he is not alive to his five children. 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 12 years. Perhaps Rose knew best because her decision was made long ago and 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 me.
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. 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.
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 import and that is maintaining the Will to Live.
Reminders to write about:-
Every record has been destroyed or falsified, every book has been rewritten, every picture has been repainted, every statue and street building has been renamed, every date has been altered. And that process is continuing day be day and minute by minute. History has stopped. Nothing exists except the endless present in which the party is always right.
Jordan Peterson Clinical psychologist Youtube
Factfulness by Hans Rosling. A quote for u for HOPE “Thank you industrialization. Thank you steel mill. Thank you power station. And thank you chemical processing industry that gave us time to read books.” Hans Rosling
Conclusion: One year is 12 chapters and enough time is given to writing about cancer and time to engage in yet another phase of my life going forward.
The most beautiful people we have known are those 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 concern. Beautiful people do not just happen.
Copyright: Elisabeth Kubler-Ross Family Limited Partnership.