4th December 2017: Chemotherapy 2 is due tomorrow so today I met my Mum Rose again at the Westin hotel in Westmoreland Street just beside Trinity College Dublin. The hair had come out in tufts so I wore the blue turban that I bought at the time of buying the wig – I do not yet have the confidence to wear the wig. We sat and we chatted. A kind neighbour of Mum’s had gone shopping for her and bought me a really comfortable warm pair of PJ’s and of course there were more hats. I had been googling as I often do and had found a piece about my dear cousin JJ and he was listed as one of Meath’s most well-known people. The Navan Historical Society had printed his obituary http://www.navanhistory.ie/index.php?page=james-comyn JJ was very special to me. My parents, both doctors, had transferred from Loughglynn, Co. Roscommon to another “Dispensary” house and practice at Tara Hill when my father became ill for a long period of time. My mum worked acting as the dispensary doctor for a large practice solo during that time. JJ and Aunt Lill knew my Mum, my 6 week old brother, and me only 5 years old needed a haven from Dad’s illness and a rambling old Victorian dispensary house that needed much work carried out by the Co. Council was unsuitable to live in. We went to live at JJ’s home in Belvin, Tara, Co. Meath and all that can tempt a child to be curious existed there at that time for me, the time I had moved from Co. Roscommon to Co. Meath and went to school at the Loretto primary school in Navan.
Back to now and cancer and chemotherapy, it registered with me that the following day I was due for chemotherapy so I checked the pink file and went to the page which detailed the drugs to be taken on the day before chemotherapy for session 1 and then as usual pure panic set in. Had I forgotten something? Of course, yes I had. Rose said phone the Oncology team; KT then phoned the team on my behalf and yes I needed the same medications as the last time, to be taken in the same routine. Smart urban community living came to my rescue yet again because I knew all I had to do is walk to the Boots Chemist in Upper Baggot Street and the team there would assist me, as they have done for over a decade now. Everything was sorted out in one hour and I was ready for Tuesday 10th November 2017 Oncology Department, 3rd Floor, St. Vincent’s Private Hospital.
Lorna was assigned to me for the day to oversee the drip feed of chemotherapy medications. Initially, it is necessary to have a blood tests to check that all is okay before they proceed. By 10.00 am – we knew the bloods were correct so it was time to start. From 9.00 am you sit in a chair while the drip feeds in the drugs. There is a TV but somehow the solemn nature of the ward you are in for that day seems to say no to media, engage with the silence. For me, I had brought with me two books, which no matter how poor my concentration was, I would be able to read one or other of them; I had the lilac diary which keeps as diligently as possible notes of my daily routine (which I am now reading) and of course the mobile phone which I so seldom use. KT unlike me never really reads the brochures to be found in hospital but quite unusually before he left he handed to me the Irish Cancer Society ‘Talking to Children about Cancer’ – a guide for parents. I do not have children so I had taken it but when I gave it to Lorna to return to the receptionbut she left it with me. Forever curious I took out the highlighter pen and I spent most of the day reading this incredible piece common sense literature http://www.cancer.ie/sites/default/files/…/talking_to_children_about_cancer_2011.pd…
All needs are tended to. Coffee to lunch is provided by Bewley’s and is of excellent choice and standard. The day starts with a nurse introducing herself and taking you to be weighed. The weight is a shock for me 12.12 stone. How did it happen? Last time I recall I was size 10-12 clothes. KT must ensure that I eat plentiful amounts but then weight is the least of my problems at the moment. Lorna is assigned a routine to deal with each patient under her care for the day. It starts with much like what a General Practitioner would do when you visited years ago. It involves a paper file and details are listed and compared to previous replies. There are a list of questions for you to answer about the intervening three weeks but again lucky for me that Snapchat/Groundhog day memory imposed on me by traumatic brain injury means that I recall so very little, in fact nothing. I note from my diary the sheer amazement as I listened to the man next to me list out all the details of what he had experienced. He was even able to ask for sleeping tablets to be added to his prescription. I am again conscious of the fact that I am lucky because my Mum had continued to pay for my VHI private healthcare insurance when it was not possible for me to do so. I have the best of healthcare cover and options.
Curious is so important as are the words “Awe and Wonder” when you have as I have a list of illnesses, one following on from the other and now to breast cancer. There is a common trend that me the humble patient can offer for the final diagnosis and that is the prevalence of a severely underlying anxiety which has always thwarted me starting with asthma when I was a child (I can recall today those vivid memories from about age two of a VW car murdering both my parents and Fr. Higgins, the Parish Priest and others dear to me). Death predominated. I have written a considerable amount about depression, traumatic brain in jury, suicide and it is for this reason that I read in detail the Irish Cancer Society ‘Talking to Children about Cancer’. Every day I try to engage with TEDMED; TEDtalks. I recommend this talk : http://www.ted.com/talks/nadine_burke_harris_how_childhood_…
Well prepared I arrived for the 2nd course of Chemotherapy in the company of KT, my ever vigilant protector. The complications from Chemotherapy 1 were to be avoided at all costs. (Tonight I am too exhausted so tomorrow I will write about this based on the notes I took during the day when Lorna kindly ensured that the drugs through the drip were monitored).
Today is Sunday and all I know is the sensation of drop dead exhaustion (as experienced when I suffered from Chronic Fatigue for years) has wasted whatever energy I need to even humbly engage with the day. I managed to wash dishes but then it was time for bed, and then having created a little more energy I get up and go to my desktop computer; the objective became Google to engage with Twitter to ensure I could engage with the world in a virtual space that could enhance my mood to saying there is some reason to fight this disease called cancer; that you have some worth within to contribute to society .
The power of the computer to help you regain some of that fighting spirit you once had is powerful; you can Google those songs of your youth, you know the ones that put fire in your belly and whose message today is still so relevant. We can hear the same singer Cat Stevens tell us about the importance of the eradication of poverty and we know that over the decades this has in fact happened so we know if we continue seeking Peace and Poverty eradication the eventual outcome is that it will be achieved, Please share this song with me. I have just had the injection that tells my Bone Marrow – produce those cells that kill off infection and my body (yesterday in particular) feels just like that Dove of Peace being attacked by a Hawk of War or for that matter the human body before a train trundling fast down the tracks knowing you are on the way out but somehow you fight back and this is what the Peace Train is about – ‘bring your good friends too….come on join the living….Peace Train sounded louder….http://youtu.be/gLG91tOLPdQ via @YouTube
Thank you Cat Stevens of my youth now known as Yusuf Islam – Peace Train – OUTSTANDING!
I have deviated. The age old need for perfection and the linear mind can be usurped because I just couldn’t engage. What did happen is what Lorna explained to me at the hospital would happen and that is within 24-72 hours after the chemotherapy the intervention from the Amgen Education team. This happened on Thursday 12 noon when Elaine, having made several phone calls, arrived from the Amgen Nurse Service for training on how to self inject your medication, which has to happen on each occasion within 24-72 hour time limit after chemotherapy. I had the prescription so the day before I went to Boots Pharmacy and all was ordered for collection next day which KT collected. This is the medication that gets your bone marrow producing cells in a kind of fast forward way to help you eradicate any infection. Elaine had her iPad and asked all the necessary questions. I found it interesting that she had studied in Trinity College Dublin both Oncology and Haemotology and that if she were to study further, it would be palliative care. The questions avoid the loopholes because loopholes can cause insurance claims and this system of healthcare must work both efficiently and effectively because basically the continuum of your chemotherapy is carried out in your home with the participation of you and your carer. The iPad carefully used by a most diligent Elaine took the details from the blister pack medications that I take each week. Elaine advised me that the next time I had to give myself the injection to do so on the other side. She explained that for the pain I had been prescribed by the hospital medications and to take them and for sick tummy, there were also other tablets prescribed.
Where am I now? Today is Tuesday 12th December and I have gathered bits of notes and articles that I gathered while that sheet of metal feeling within my body frame laid me down to rest. Thankfully my virtual world remained a possibility so I know I have been able to spend some time engaging in that daily routine of using Twitter for my augmented memory; emails alas, I am just deleting them for the moment, this brain cannot focus on content so yes I have had to concede and admit there are limitations and I must abide by them. Awakened from sleep I evidently found an old Time magazine dating back to 2015 title Health “The Cancer Gap”. No two cancers are alike. But what will it take to give every patient equal care. time.com/magazine/us/3750518/march-30th-2015-vol-185-no-11-u-s/
Highlighter to hand tells me I read the article and it made me think a little. I have included the link above but I am going to take this opportunity to read again those facts that catapulted my state of ignorance to gain some more knowledge about breast cancer. Before I start, the hair falling out is appalling. I have lots of hats but when you brush your hair and big chunks end up on the brush and then you see the bald patch; it cuts deep. I find myself trying to hide behind the hat; especially at night when I put it on, hoping against hope that by the morning it will be still on my head, hiding that sense of shame. My memory drifted back to childhood and I found myself trying recalling the Bed Cap. Yes, now I know the secret of then, the cap could be tied just below your chin so you could conceal whatever it was that you wanted to hide.
Two women diagnosed with cancer: Both women’s doctors opted first for the blunt-force approach that’s standard for most cancers: surgery, radiation, chemotherapy. In the case of one women diagnosed with glioblastoma this detail cannot be ignored because it describes just what cancer does. “But gliobalstomas have an insidious habit of infiltrating brain tissue with tiny fingers of malignant cells, making the tumours hard to treat the traditional way. That’s why, even after treatment, they almost inevitably come back.
There is a better way of attacking glioblastoma, or at least the doctors think there is. It’s still at the EXPERIMENTAL STAGE, but when the patient’s body couldn’t tolerate the chemo, she EVENTUALLY became among the first patients to TAKE THE RISK AND TEST IT”.
Again, it is repeated, no two cancers are alike; even with an individual patient, tumours may change over time. And doctors are learning that a melanoma growth might have more in common with a lung cancer or a brain cancer than another melanoma. The article cites Dr David Solit, director of the Kravis Centre for Molecular Oncology at Memorial Sloan Kettering Cancer Centre (MSKCC) “We are moving away from the concept that all lung cancers are the same and all breast cancers are the same and all colon cancers are the same. It will involve looking at mutations.
The line I like (because in a generation of grand aunts and uncles, all except one died of different cancers, apart from one brother who died very young from the 1918 flu epidemic, and a sister who died from a third stroke. My grandmother died from leukaemia in her early sixties and when you look of photos of her at my Christening you quite evidently identify that cancer was consuming her body.
Quotation from Time article which is a guideline going forward:-
“That’s led to a new consensus that to truly fight cancer, doctors need to see and understand it from the inside out, which means decoding its DNA and exposing the way it co-opts the body’s healthy cells. Once that’s known, the task becomes to DEVELOP DRUGS THAT CAN THWART THE WAY A GIVEN CANCER WAS VIRTUALLY NON EXISTENT.
Now, given that this article in written in 2015, we know that fast-moving developments in genetics and molecular biology are heralding change. I have mentioned my genetic strain in that four maybe five out of six died from cancer; by the next generation, I know that a further four of that generation had cancer and I have cancer. I wonder if the Team would be interested in my genetic code. My virtual world, no doubt through Charlie Rose interviews and TED Talks tell me 23 and me make it very easy now to access your genetic code and it is becoming cheaper and cheaper on a daily basis. http://www.youtube.com/watch?v=FJsZ6NQrqGQ
So here I am in December 2017 and I am going to assume I fall within the category of the revolution known as precision medicine! The move is away from crowd-based, best for most treatments, and toward therapies specifically designed to treat the individual patient’s ills. “The mantra for the precision approach is to learn from every single patient. The link for article is there for people to read; I am going to close off on this section by highlighting the work of the American Society of Clinical Oncology (ASCO) which recently announced it is creating a registry of patients who take drugs that are approved for a cancer other than the one for which they are cleared by the Food and Drug Administration (FDA).
“We want to gather information and see what happens to those patients, even if they aren’t in a clinical trial”. Dr Julie Vose, chief of haemathology and oncology at the University of Nebraska Medical Centre and president-elect of ASCO”
It appears that an email caught my attention because I printed it to remind me always the importance of education awe and wonder. As a collector of quotations for many years now this heading “Let me Blow Your Mind: The Importance of Awe in Education” by Raya Bidshahri (December 4th 2017) inspired me to search awe quotations and then send them out via twitter. You can be sick but that does not mean you have nothing to contribute to society, the virtual world has provided a platform for many years now for people like me, with limited capacity, to engage thanks to a form of augmented technology which I go so far as to call my access in advance to artificial intelligence. This article is from Singularity University, Singularity Hub and this quote will re-affirm what I have just said:-
Many people live a life of routine and monotony. But those who seek out wonder, meaning, and intellectual complexity in their lives are found to be happier, healthier, and more motivated. At a fundamental level, we all crave to be a part of a grand mission, something larger than ourselves.
Illness is so complex. We know so very little. Being a daughter of doctors, a niece of a doctor, a cousin a doctor, I often wonder why medicine was so paternalistic in culture. The patient was seen as the object to be instructed. I am hoping now that data mining and artificial intelligence grows fervently forward so that this dynamic will change. I read a book recently by Eric Topol, a geneticist and cardiologist and the title says it all “The Patient will see you now” http://www.nytimes.com/2015/02/…/the-patient-will-see-you-now-by-eric-topol.html I believe medicine is about to change so significantly that people will be educated to understand their own illnesses and contribute significantly to the massive change in how health works with their direct contribution to being responsible for remaining healthy and engaged, both physically and most important cognitively.
Chemotherapy/Herceptin can cause problems with hearing. Traumatic brain injury resulted in me losing the hearing in my right ear completely (and my smell also). 1994 medicine and consultants wore such an air of authority and knowledge all you felt was apologetic as you mentioned outcomes ie like losing hearing, cognitive ability, sense of smell, short attention span, falling constantly, sleeping most of the time, et al) as a don’t be wasting my time response. Add to this the complication of Bipolar – then you were left in a total abyss. Thankfully I had an excellent psychiatrist, Dr James (Jim) Maguire who encouraged me to keep seeking answers. He introduced me to the first neuro-psychologist practicing in Ireland at that time.
Murmurings in the media, followed by an interview on RTE 1 Sean O’Rourke show with Professor Ian Robertson http://www.universitytimes.ie/…/the-former-dean-of-research-at-the-forefront-of-brain-healt…, now retired from Trinity College Dublin but heading up the Global Brain Health Instiute http://www.gbhi.org/ highlighted the significance about hearing and the exposure to dementia. Ask any person with traumatic brain injury who loses their hearing especially in the right ear just why the amnesia factor re-iterates constantly you will fall into that category of Dementia especially frontal lobe dementia. The social isolation is the fact that the medical team dismiss your symptoms as nothing by comparison to worse cases. I do know that life dealt me a hand that curiousity kept me searching and I found the computer and now know I developed other areas in my brain to compensate for hearing loss.
In May, WHO adopted a new resolution on hearing loss that is far more comprehensive and emphatic than the prior resolution agreed upon in 1995. WHO estimates the annual cost for unaddressed hearing loss to be about US$750 billion globally. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)33097-0/fulltext
Imagine a piece of sheet metal and cotton wool trying to penetrate it – that’s what my body feels like these days but I am getting stronger and yesterday managed to put up a Christmas tree and a few decorations. I am working on the basis of the gratitude list each night (Ariana Huffington system). KT has taken me out to coffee a few times; and I met my good friend Esther the other day and just having access to someone who understands is powerful especially when you need the bone marrow to produce fighter cells. My thoughts are taking me back all the time to when I was a child growing up with Tara Hill and Belper as my playground. The thoughts are of my Dad and when he died. My Mum asked me where he should be buried and I said Tara and he is buried in Tara. Cancer tells me I will be going there too. In 2007 I wrote a lot on a citizen journalism cite about Tara Hill and the new road. Again there was a marvellous connection with an American woman who had taken photographs of Tara. I checked out the site and found the photos which I included here. Susan also had cancer. I recommend this link https://canisgallicus.com/2017/12/13/citizen-journalism-ireland-the-dew-of-dear-tara-susan-isabella-sheehan-repasky-flicker-light-studio-america-and-michelle-clarke-2007-2/
14th December and Christmas is coming. Esther gave me some really good advice. Apparently the Hospice in Harold’s Cross had a gathering the other day for family members and friends of people who had passed away. They gave this little snippet which I am going to embrace; they said forget about Christmas Day, if you are not feeling able, have it another day. So I am drifting along doing what I can and thankful that I have been out tonight with my beautiful dog Freddie for a walk down Clyde Road and Wellington Road. How I appreciate the efforts of the people to have such an array of Christmas lights, it makes it, like Heaven and I don’t have to do the work; I just need to walk along and be thankful.
TEDMED – if you want to listen to topical conversations about medicine; I highly recommend it. For people with cancer, for family, for carers, when you feel strong enough to engage, I recommend this:-