May 1st 2018 and where has all the time gone? I postponed my appointment to meet my psychiatrist because I had been remiss in getting my bloods tested for lithium. I decided to make the appointment for these bloods on the same day as I was attending the hospital for my Herceptin. Thankfully, at short notice, it was possible to make the appointment; I have to say phlebotomy works very well these days. You make the appointment by phone or email. It is confirmed so then there is a record if you fail to turn up. It is shameful the number of people in the public sector who just don’t turn up for appointments – it was recorded in the media recently that some 488,000 (costing the HSE e21.5 million) http://www.cuh.hse.ie/…/Out-Patient-Non-Attendances-What-Can-We-Do-About-This-Majo… failed to attend medical appointments. This would not happen in the private sector of medicine.
I am feeling exhausted these days; it may be that I am due my cytamin (B12) injection soon or it may be down to being a cancer patient on Herceptin and on a cocktail of psychiatric medications. It is not yet of the severity of the ‘drop dead’ exhaustion I had with Chronic Fatigue but it is hard to keep motivated and engaged. I feel so useless at times when I look around and see the clutter beginning to gather and know that I just do not have the energy to make changes. I don’t even have the energy to ask someone to come and do the necessary painting and as for getting new carpets, here goes yet another year with the moth eaten carpets because I just could not face the upheaval. Who knows maybe next year?
Next Year? Who knows? Everyday in the news, the documentaries, the radio, have people with cancer reeling in fear of the unknown; that breach of trust which is so essential when you are diagnosed with cancer. The National Screening Service http://www.screeningservice.ie/ is not about diagnosis; it about identifying pre-cancerous cells, and this screening services is now rightfully in the Dock. It took a brave mother of two children to come forward and rattle the cages of that monolith of bureaucracy called the HSE. Vicky Phelan has personalised the horrors of a profession ensnared by bureaucratic chaos, to wrestle the attention of the people of Ireland to what can only be described as negligent practice of non communication between CervicalCheck, the gynaecologist, the general practitioner with Vicky Phelan and it now appears that this has happened in a number of cases. It is at this time, as HPV vaccine is available for school going children, this woman takes her specific case of cervical cancer and shows us how secrecy or as some like to say paternalism resulted in her not being told she had cancer; The Irish Examiner 27th April 2017 sums it up:-
In 2014, the 43 year old mother of two was diagnosed with terminal cancer but it was another three years before she was told the results of the three year old audit. Ms Phelan took legal proceedings against both the HSE and the US laboratory, and settled in the High Court this week against Clinical Pathology Laboratories in Texas for e2.5 million.
Being almost 20 years older and with co-morbidities, I most assuredly would not have the energy to tackle what could in another jurisdiction most probably fall into a corporate manslaughter charge. We owe people, like Vicky Phelan, Laura Brennan and others who speak out for the benefit of others, a true debt. This is altruism at its very best; it is true compassion for our fellow human beings. The article above goes on to state that “it is a known fact that screening saves lives and that it is essential not to jeopardise the service by failing to be transparent.”
I include this link because the power of the pharmaceutical companies is beyond the comprehension of most people and most definitely the HSE fail dismally in negotiating competitive prices for drugs when you consider that medication for schizophrenia can be Stg6 in North of Ireland and in the Republic cost nearly e60. This link is about 20 minutes but it shows just how corrupt situations evolve in pharmaceutical industry and how they entice doctors in the US to prescribe a drug and reward them with in excess of US$300,000+ bonus. http://www.cbsnews.com/news/the-problem-The problem with prescription drug priceswith-prescription-drug-prices/ Medications relating to cancer are very expensive. We are told that there are in excess of 200 women facing a terminal cancer (as a result of the CervicalCheck scandal) and who will not have time on their side and who will need the medical profession and the HSE to negotiate the best deal possible to ensure they have the medications that will give them the best outcome with the least pain.
BreastCheck located my cancer but I must be honest CervicalCheck is one of those invasive tests that most of us shudder at the thought of. In the UK when I lived there, a very diligent NHS woman doctor noticed that I did not want to have the test (I had a bad chest infection) and rather than let me make an appointment and then cancel it, her professional keen eye, persuaded me to wait and she carried out the smear. It turned out to be faulty and having health insurance at that time, I had my first and last visit to Harley Street, London SW1. No false outcomes were determined but then I just lapsed again into a form of denial and 30 years on, I have had one cervical smear and that is about 28 years ago. I am within the screening age and as far as I am aware I never received a notification to go for a smear test. This is not about blaming the service; it is about my recognition of the fear of this intrusion. Ironically, despite nearly two weeks of media coverage and people like Professor Crown, the Irish Cancer Society, Kate O’Connell TD asking people not to be scared and to make the necessary appointments, despite the free telephone services and nurse-on-call, I am saying well if I have breast cancer why do I need a check-up for the cervix? I am sure there are many more women like me.
The one message that penetrates and that we must take note of is that ‘Screening saves lives, but it is not infallible’. This is the title of an article written by Dr Robert O’Connor in the Sunday Business Post on April 29th 2018. Dr O’Connor is the head of Research at the Irish Cancer Society and of all articles that I have read, this is about clarity and sufficient explanation especially for people directly affected by this scandal. http://www.businesspost.ie/health-social/screening-saves-lives-not-infallible-415318
A prestigious Cochrane review published into studies of the test from around the world found that for every 1,000 women screened, around 20 will have pre-cancerous changes. But the review concluded that the test would only identify 12 of the women, missing out on eight of them.
Generally there are two types of error in screening tests:
A False Positive: Test finds something abnormal present when it actually isn’t.
A False Negative: Test doesn’t find anything out of the ordinary, when in fact there is. This means that if there is cancer it can get worse and might require treatment.
The mistakes occur for a number of reasons: administrative, technical and due to human error, where the tester doesn’t pick positivity.
The article is worth reading but I will add this:-
When it comes to cervical screening in Ireland, it is important to note that the vast majority of tests are accurate and error free. Screening saves lives by detecting cancers early, when treatment is most effective. Each year 300 women are diagnosed with cervical cancer.
Back to St Vincent’s Private hospital and time for infusion of Herceptin. I was so delighted to meet up with a friend of my Mum, we nearly did not recognise each other but we sat down and had a chat about old times and I have to say I really enjoyed it. I miss meeting my Mum each week in the Westin hotel just near Trinity College Dublin, I find it so hard to believe that she passed away at Christmas. There is a bond between mothers and daughters that runs deep; there may be disagreements and they may be fractious; they may hurt deep on both sides, there may be blame. Like a lot of things in life, there are no explanations but at a deeper level, there is that special bond and especially as I have no children, it is natural that my connection will be with my mother and her family. Maureen showed me photos of her grandchildren, 2 young boys and their sister, you could see how delighted she was with them.
Arrived in time for my 2 pm appointment. I was early so I signed in and had a coffee. Soon it was time for my weight check (only slightly down 78.6 kg); my pulse, followed by BP was taken and then it was time to go to my Chair for the afternoon. All 64 chairs were occupied that morning; to be followed by more patients in the afternoon. The nurses are constantly on the alert and tending to patients complex needs as each patient is receiving different infusions. I met with Professor Crown (who recognises me because I have more one way conversation with him on Twitter than when I meet him). I still have the dart of pain in my left eye, I am tired, I have an ache in my back and left breast but apart from these few ailments that I have written in my diary and passed on to the Nurse which she wrote in my file which was reviewed by Professor Crown, I am moving along day by day. I had intended to ask Professor Crown about genetic testing but even though I had the advert from the newspaper with me, I forgot. I am aware that close relatives of mine have died as a result of cancer and although I have no children; it may be of benefit for other family members to know. Again, I found out from the newspapers and advert by the VHI. According to the VHI ‘some cancers are passed down through family genes….The test involves a clinical review of your family medical history, followed by a blood test to identify gene mutations…search Vhi Genetic testing http://www.vhi.ie/Hereditary/Cancer-Tests My next appointment is scheduled for May 20th 2018.
The MRI thankfully was clear. The dart of pain could be something like a neuralgia or even sinus. I am to make an appointment with an Ophthalmologist. After all this the good news is that my hair is finally beginning to grow again so this means I am on the road to recovery.
10th May 2018: Day by day more women are coming forward, women with families, and they are facing terminal cancer because of some policy directive that nobody is willing to take responsibility for. Swamped with information leading to confusion has resulted in much media coverage, social media, and newspaper opinions and articles. As I am one of those on the inside track ie I have breast cancer and am keen for solutions, I have a selected the pieces I consider most relevant.
There is a key piece of advice by Muiris Houston, Irish Times Health and Lifestyle supplement, 7th May 2018, which all people but especially those in the medical profession; the HSE, and patients should note and that is that “No news is not good news; it can be bad news and just not communicated. http://www.irishtimes.com/…/when-it-comes-to-health-checks-no-news-is-not-good-n… There is much emphasis in our lives today that when we don’t get feedback we take it as a given that all is okay but this is not so and we must be diligent and take responsibility, as a service user, because as we now know human error within the Professions, the Bureaucracy ie HSE and the Pathology testing companies (US also), is possible and may even be detrimental:-
The patient safety expert Carl Macrae has written extensively about patient safety. Muiris Houston’s article states “in the handling of important test results – the absence of a confirmation message should be perceived as a sign that the communication system has broken down.”
Personal Comment: There is a man who regularly stands outside the BreastCheck clinic St Vincent’s University hospital. He speaks through a loudspeaker. His wife received invites to BreastCheck but she hid them out of fear and he found them after she died from cancer. He is asking that BreastCheck go that one stage further and when they notice someone does not turn up for their appointment that they continue to make contact with the person called for screening and if at all possible with their spouse.
Muiris Houston further states that the patient safety office (and we should all be aware of its existence) of the Department of Health must “sink its teeth into this problem without delay”. There is an urgent need to ensure that robust rules exist for the communication of test results, which must be implemented by the HSE.
The broad heading is the National Screening Service. The unfolding crisis over the last two weeks concerns CervicalCheck (screening done every three years); but the question for me and others who have gone through the BreastCheck (screening every two years) is: do we need to make contact and request details of our earlier tests.? With the myriads of reporting on this crisis, these pertinent questions are lost in the prolific writing on the topic and the copious re-run of the same information. Then we must ask about those people who were never called for CervicalCheck? Where does the neglect lie here; with them ie me (fear) or with the doctor or with the service? Now that I am diagnosed with breast cancer does it mean I have to go forward for a CervicalCheck? Then add to this the people who are over 60 and await the receipt of the postal delivery that apparently automatically arrives after your 60th birthday; will they be required to seek comparisons to earlier checks? Herein are a lot of questions?
Emma is the latest casualty of this awful situation, a mother of five children, with the youngest only two and half years old. Emma appeared on the Late Late show last Friday and in shock she revealed the horrors of how it unfurled in her case that she had not been told the vital information; and now she faces terminal cancer, aged only 37. More people will be identified. Personally I do not believe that the media is the best place to live out a life of spectacle in the hope that other people will not be blighted with the same non-communication as happened in the case of Vicky Phelan; and now Emma. Maybe I am naive but it takes me back to reading about mental hospitals in England where they used to put mentally ill patients out on view for the local community, This was Bedlam and although in another century; the visibility through global media makes it equally horrific now that we have to witness the illness to be horrified into action. The duty now rests with the Scoping Inquiry to be headed up by public health expert Dr Gabriel Scally with a deadline to make its findings of June 2018. There will be a follow-up commission of investigation.
Quotations: Everyday I read through them on the computer, sometimes choosing a name, other times it might an idea related to what is going at present. Today, I decided on ‘Clarity’ mainly because my good friend Joe Murray BL always tackles the obiter dicta in such a way that you get right to the mens rea, just as a good barrister should do. So Clarity is what is needed and I was delighted when I opened the pages of the Sunday Business Post and read from start to page 19, accessing more and more information about this scandal, that John Crown (Consultant Oncologist and a former member of Seanad Eireann) has written with clarity and precision. Thankfully people have access to this article on the internet; the link is as follows:- http//www.businesspost.ie/opinion/evidence-proves-cervical-screening-works-416442
My quote is about Clarity
“There is a poignancy in all things clear, In the stare of the deer, in the ring of a hammer in the morning. Seeing a bucket of perfectly lucid water We fall to imagining prodigious honesties.” (Prodigious “Very large, immense and wonderful”)
@ProfJohnCrown First and foremost I start with Professor Crown’s twitter details. For people who have cancer, lack of energy, fatigue often prevent you from activities which previously could be done without effort. Twitter becomes a shortcut to access to information, communication and links.
We need Prodigous Truth. We need facts. We need honesty but honesty does not necessarily give the answers we want, especially where the diagnosis is cancer and the prognosis is often an unknown. I highly recommend this article for people with cancer or in general because expertise comes at a high financial cost but this opinion is basically at no financial cost so its value is immense.
To start – the title answers so much in just a few brief sentences. ‘Evidence proves the cervical screening works. “No matter how good a screening programme, no matter how effective it is in reducing mortality in society, it will hurt some patients.”
Quotes are direct from Professor Crown’s article.
- Medicine has developed variably successful strategies for dealing with the cancer problem. Some cancers, such as childhood leukaemia, can be cured with drugs. For others, prevention is best. Lung cancer (usually, not always caused by smoking) and cervix cancer (HPV vaccination)……
- For most cancers, the best chance depends on early diagnosis and treatment:
- Screening is the ultimate early diagnosis strategy. “Screening” refers to testing apparently healthy people who have no complaints, in an attempt to diagnose as yet occult (study of the supernatural) cancers or pre-cancerous conditions…..
- Organised screening is nearly unique in healthcare. The patient doesn’t seek medicine, medicine seeks the patient…..
- The success of screening programme is measured by the reduction it produces in the burden of disease in society. On a population basis, mammography (breast X-ray) screening is one of the most effective strategies available to society for reducing the death rate from breast cancer. A screened population of over 50 year olds will have an approximately 20% reduction in the number of breast cancer deaths in comparison to a similar group without screening (I fall into this category, having been called for screening last year and cancer located)…..
- The evidence that cervical screening works is overwhelming. Routine screening by studying cells from the cervix, entered the medical culture in most western countries during the 1970’s… please refer to link for precise details http//www.businesspost.ie/opinion/evidence-proves-cervical-screening-works-416442
- Patients may suffer other harms. The “PSA” blood test is quite good at identifying prostate cancer in men, but it isn’t absolutely certain that treating these cancers with life changing surgery or radiotherapy prolongs survival, although many experts believe that it does.
- Tragically, we still have approximately 100 cervix cancer death annually in Ireland (compared to approximately 700 from each of breast and lung cancer).
- Newer generation cervix screening technologies and widespread vaccination will hopefully reduce the number further. We should aim for Zero.
I recommend you read the article for the conclusion. but I will include this:-
Professor Crown concludes with two questions that need to be answered promptly:
- Is our rate of false negative screens higher than in comparable countries?
- Is there a discrepancy in the “pick-up” rate between the different Irish and international labs that service CervicalCheck?
Therein is Clarity. We now await Dr Gabriel Scally (President of the Epidemiology and Public Health section of the Royal Society of Medicine); who also engages with Twitter @GabrielScally and who has been appointed to lead the Scoping Inquiry on CervicalCheck http://www.imt.ie › News
Before I conclude I want to highlight one more reference by Professor John Crown in The Times May 9th 2018:-
It is so important to engage with the Screening Process is the message:-
With breast cancer, Professor John Crown, the oncologist and former senator, says screening remains important, but we have underestimated the impact of drugs in reducing mortality, especially the worst type of cancers.
Modern medicine is a miracle. Early diagnosis and better treatment saves lives but screening is not a silver bullet not is it cost-free. The risk of turning healthy people into cancer patients is a price people should know they are paying when screening is offered.
Nobody wants to take any chances, and I’ll go for my smear and BreastCheck. There are no guarantees, though, and not every subsequent death is a state-sponsored scandal.
There is a sting in the tail here but I will await the outcome of the Scoping Inquiry to make a judgment on this.
Back up to my local urban village Upper Baggot Street for the next stage of the treatment. The MRI was clear so it was time to visit Vivienne Starr, Optician, who I know for over a decade now to organise an eye examination. An appointment was arranged for the following Monday. On Monday 15th I met with the Ophthalmologist who gave me a thorough eye check. The eye check showed up no changes or any inconsistencies. The ophthalmologist assured me there was no evidence of cancer in my eyes. However she asked me to return for a ‘Field test’ and to organise same with Vivienne. This is a test to identify glaucoma http://www.fightingblindness.ie/eye-conditions/glaucoma/
I made the appointment for Wednesday. As I was walking I noticed the Well Woman sign next door to Meaghers Pharmacy. The constant flow of media about CervicalCheck brought it to my attention that I had never been called for screening. I decided I would be brave and went up the stairs and spoke to members of the team. I explained my situation. They recommended that I contact the National Screening Service to see why I was not notified. I asked them about a private appointment and they said it would be the following week at a cost of e120; but they did qualify this by saying they were awaiting Government intervention which could mean a lesser charge. I returned home and phoned the National Screening Service. With great efficiency they answered my question and then asked me their security code questions. They had my name, my address, my age and they knew that I had never been called forward for screening. It is hard to imagine that if you are called for BreastCheck screening how it is possible that you are not called up for the CervicalCheck? Here we go again with bureaucracy and silos. I have the ID number. I am due back in Oncology for Herceptin on Tuesday so I will then ask if it is necessary for me to have a CervicalCheck. I have had so much illness over the past two decades that I keep details in a WordPress list and I do know I have been treated on two occasions for bleeds. You will find my details on this link https://canisgallicus.com/2018/04/12/1993-2018-traumatic-brain-injury-memory-deficits-bipolar-anxiety-ect-chronic-fatigue-to-diagnosis-2017-of-breast-cancer-a-journal-because-i-recall-little-of-all-this/
Chapter 8 is almost complete but it is time for a little of what is abstract about my life with traumatic brain injury and how I link to this article which I found by using the search key on Twitter and “Augment Memory”. I am not a Facebook user because the intellect is insufficient to understand it. I can’t really explain what I don’t know. However Twitter has been my lifeline for many years now. Thomas Dixon is ahead of me http://www.fastcompany.com/3037432/this-man-uses-twitter-as-a-prosthetic-device-for-his-damaged-memory
When did I discover Twitter – I don’t know; it must be years ago now. I just experimented and realised that I could use Twitter to engage with the world out there. You may be horrified at the amount of time I spend on Twitter but you see there is purpose for me and therefore it is not an addiction. 19th May 2018: I have sent a sum total of 404,000 tweets and I tell myself and @jack that if data becomes a commodity like oil at least I will know I will have compiled a lot of data based on the fact that I use Twitter for a completely different purpose than other people ie apart from Thomas Dixon. I am following 2,879; and today have 2,343 followers. Every day I tweet, 7 days a week, because then if I go out and meet people I have uploaded in my brain that fails to recall yesterday; last year or beyond so therefore I don’t feel so inhibited or even useless to society. Everyday I choose a quotation that I think is relevant; I try to respond to mentions; and I follow what I do understand at a deeper level, where memory is not required. Gossip is near impossible for me. I talk politics with a keen interest in social justice and it is my deep belief that this is sourced from my childhood when my Father and cousin JJ who used to visit Ireland every weekend discussed medicine, law, politics, history and about life in general. This was the 1960’s. JJ was legal adviser for Private Eye, News of the World, and other newspapers so his focus on a Sunday was to read all newspapers and he and my Dad, also an avid reader of newspapers, would spend hours in conversation and I would listen to them.
Twitter allows me to engage with the world news; add to this that each day, my partner KT buys three newspapers to keep me occupied for a few hours;; again tapping historic memory, mixing it with the day and often the outcome is a journal. Since my traumatic brain injury when I fractured my skull in 1993; it was a horse fall while going over a jump. This was further complicated because I was living in Harare, Zimbabwe. Thankfully, I have been fortunate enough to have had access to the use of a computer. Prudential-Bache in London allowed me to take my computer when I left employment and it traveled by ship to Zimbabwe. The computer meant I could write letters about Zimbabwe and life as an expatriate, which I still have . When I returned home to Ireland, my mother bought me a computer and again I continued using it as a source neuro rehabilitation. I have to admit unlike Thomas Dixon, I never adapted to the Smartphone. I rely on my desktop computer. Thomas Dixon and I share some similarities but also I have adapted my own techniques which differ from him. This may be to do with different character traits and personality. I am not interested in knowing the incidentals of yesterday, like who I met or didn’t meet. I just live the day, based on the experience and recommendation of a wise Jonathan Swift who said many centuries ago now and that is “Live each day of your life”.
To return to the article written by John Paul Titlow, Fast Company about Thomas Dixon:-
- Twitter is his memory but he uses it to be able to remember what he did yesterday whereas there is no point in my case because I just don’t recall the content. In my humble way, I think it is that my span of thought is too narrow and that I have problems with sequence but the positive is that I can use the tweets as a prompt to create new thoughts and connections based on historic pre-accident memory, This may not make sense to others but it is how I engage with life. This explains why I don’t use phones because in the early days they were hostile to my self esteem leaving me exposed to the fact that I could not remember content.
- Traumatic brain injury/acquired brain injury are referred to as the silent epidemic and as stated in the article written about Thomas Dixon ‘you wouldn’t guess from having a face-to-face conversation that his brain is damaged. That’s because nothing about his speech or general intelligence was affected by the accident’. To this I must add that no two head injuries are the same.
- Like Thomas Dixon, I do not remember the accident. In fact of yesterday’s, I remember virtually nothing. If I read what I have written consistently over the years I am not familiar with the content. If I read a book I must highlight it because as I read I forget – I cannot memorise. I think I share this with Thomas Dixon who describes his experience as ‘his episodic memory-specific, autobiographical details like where he was, who he met, what he ate and the like – has been compromised by the traumatic brain injury…’ He goes on to say “I’m always aware of what I am talking about and who I’m with in the moment, I just don’t know what happened yesterday or the day before. My declarative episodic memory is shot”. http://www.human-memory.net/types_declarative.html Thanks Google because you have just allowed me to access this link and details and therefore I know this applies to me too but ask me to use it as a defence when people want an argument; I am stifled. Thankfully I am forever questioning and curious so I think this is how I have adapted to my groundhog day routine using the computer for email, Google and Twitter.
- Technology hasn’t provided all the answers for me. I use a diary and a notebook. One dimension focus removed my ability to multi-task.
- Employment: Social security. Why? This is so well summed up by Thomas Dixon:-
“They’re putting me in this gray spot – I’m not getting hired because I can’t remember what happened yesterday”.
What an irony when the reality is that this person with TBI has super-charged their memory with tech, his natural inability to recall the episodic details of his experience could lead to trouble in any number of traditional work scenarios”.
- Yes Hop Skip and Jump is how I sum up my engagement with Twitter. My crazy mind says that someone should be able to use the data and find trends that may provide answers. So hence I have 404,000 tweets (while Thomas Dixon has 22,000). I work in the virtual world of the now using Twitter to engage in the now.
KT said to me today what a year we have had; but for me I recall none of it. All I know is that I am fatigued, my back aches and that my diary says Tuesday I return back to the hospital for Herceptin treatment. There is a reason that I have digressed to discuss my traumatic head injury, memory deficits, loss of sense of smell, deafness in one ear and that is that for people with cancer especially Vicky Phelan, this is an effective way of communicating without depleting the limited energy that illness bestows on you.
To be completed: