Breast Cancer in the midst of the CervicalCheck screening scandal. Chapter 8

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 Prodigious 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).
  • Hope:
  • 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:

  1. Is our rate of false negative screens higher than in comparable countries?
  2. 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 http://www.wellwomancentre.ie/‎ 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 from the National Screening Service.  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 information 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, I can contribute to general conversation.  Everyday I choose a quotation that I think is relevant and upload it to Twitter and retweet it where appropriate; 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.  I sustained a traumatic brain injury when I fractured my skull in 1993 – it was a horse fall while going over a jump, and 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 in 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 next 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, Twitter is an effective way of communicating without depleting the limited energy that illness bestows on you.

16th May 2018:  It was time for the Field Test (Opticians) so I attended and Vivienne patiently carried out the test – it involved looking into a screen and using a buzzer each time a random light appears.  I await the outcome.  The following day it was time to return to see Professor Armstrong (Consultant Radiation Oncologist).  KT came with me.  I explained that I thought my breast was tender but I must admit that when he so thoroughly inspected my left breast, there was no pain or tenderness.  My next appointment is next year so this is progress.  By Monday 21st May 2018, it was time to receive a text message that said would I attend Oncology 3rd floor St Vincent’s Private at 9 am instead of 2 pm the following day.  This was fine for me and I arrived with my magazines and book ready for Herceptin treatment.  This time because there is a side effect related to Herceptin I had to start with a Heart Echo  which takes about 30 minutes and when the all clear is given; and when the bloods are taken then the treatment of Herceptin can go ahead.  Every three months I get a cytamin injection for Vitamin B12; I find it improves my ability with concentration and the spoken word.  The nurse gave me the injection.  The bloods taken by the hospital are a full blood count and the emphasis is on the liver and kidneys.  Being concerned about the cervical smear test I raised with the nurse who recommended that I ask Professor Crown about it.  I arrived with my list which goes like this:  it was on an article I had removed from a newspaper about Health Heroes Professor Rose Anne Kenny.  The TILDA study http://tilda.tcd.ie/ is her field of expertise and I am part of the study so I wanted to know if I should opt for the Genetic test.  Professor Crown patiently went through my family history and decided that my relatives who have had cancer are too far out and that for this genetic test you have to attend another consultant in Oncology.  This concluded: I asked about the cervical smear, explaining how I had never been checked (except on two occasions as detailed earlier).  He said at a later stage we could organise this but it was not a priority.  The rest was the usual:- fatigue, stiff thumb, stiff knees.  I told him I had my eyes checked and all was okay pending Field Test for Glaucoma.  It was nice to hear Professor Crown say to the nurse present that this is a most probable success story of BreastCheck screening and caught in time.

To finally conclude this chapter; I have exceeded the quota of between 3,000 and 5,000 words per chapter.  I am meeting a good friend Esther for a chat and I am passing Meagher’s Chemist on Upper Baggot Street and the Well Woman sign is there.  Contrary to Professor Crown’s advice I ended up having the cervical smear screening test done by the doctor, there was no need for an appointment and it was paid for by the National Screening Service (follow on my telephone call and the ID given by them).

Screening works and it is essential that the media hype does not inhibit people from having their check-ups.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Posted in Uncategorized | Leave a comment

Breast Cancer in Retreat: Routine of Chemotherapy and Radiation is over; now it is Herceptin every three weeks; Vicky Phelan CervicalCheck programme failed her to such a degree that her cancer is now Terminal. Chapter 7

via Breast Cancer in Retreat: Routine of Chemotherapy and Radiation is over; now it is Herceptin every three weeks; Vicky Phelan CervicalCheck programme failed her to such a degree that her cancer is now Terminal. Chapter 7

Posted in Uncategorized | Leave a comment

Happy New Year 2018: Quotes centred on history of conflict Arab Christian: Explore history of world at war. Theme Detente by Michelle Clarke

via Happy New Year 2018: Quotes centred on history of conflict Arab Christian: Explore history of world at war. Theme Detente by Michelle Clarke

Posted in Uncategorized | Leave a comment

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

via 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

Posted in Uncategorized | 1 Comment

Breast Cancer in Retreat: Routine of Chemotherapy and Radiation is over; now it is Herceptin every three weeks; Vicky Phelan CervicalCheck programme failed her to such a degree that her cancer is now Terminal. Chapter 7

It is so hard to believe but I have just had two weeks without any need to go to St Vincent’s Private Hospital.  Easter is now over and it is time to start thinking along the lines of being a breast cancer survivor.  It was time for a renewal of my three monthly supply of medications and to get a blood check for Lithium levels.  My GP Dr Peter Cahill has worked alongside Boots pharmacy in Upper Baggot Street, Dublin 4, as a diligent team to remove much of the stress associated with being diagnosed with cancer; while being medicated for bipolar and anxiety also.

I was given a book on loan because it was special to the person lending it to me.  Having read it I don’t think I would recommend it to others with a diagnosis of breast cancer because it is a bitter stark reality of a Mum, Ruth Picardie, Journalist, back in the 1990’s who was diagnosed with breast cancer and who died within one year.  As I have no doubt said many times before the fact that memory deficits erode all details on a daily basis; it is difficult for me to record any side effects or identify with what I really feel about having breast cancer so this alters my experience with that of other people with the same diagnosis. The book title is “Before I Say Goodbye” by Ruth Picardie (10 pence was donated to the Lavender Trust http://www.breastcancercare.org.uk › Donate › Other ways to give for every copy sold) and the title goes on to state ‘The bottom line is, I’m dying’.  At first I was shocked that anyone would give such a book to a person diagnosed with breast cancer but as I gently read each page I realised that it acted as a prompt to me to be diligent in noting side effects and being aware of the possibilities of secondary cancer as detailed in this link https://www.cancer.gov/publications/dictionaries/cancer-terms/def/secondary-tumor and also the importance of notifying the medical team about any abnormal changes, no matter how insignificant.  Also, it made me realise that no two cases are the same. Ruth Picardie, unlike me, was leaving behind twin children aged 2 years and her young husband.  Ruth was only 33 years old and since Ruth passed away in 1998, there have been massive improvements in cancer diagnosis and treatment over the last two decades.  http://medhum.med.nyu.edu/view/11933

The idea of including the exchange of emails with friends and readers of Ruth’s articles in the Observer magazine highlighted how necessary it is for me to keep a diary and details of symptoms which I must report to the medical team.  I have fatigue and I need to sleep for an hour in the evening but again I have no doubt said this before, the fatigue in no way resembles what I experienced for many years with Chronic Fatigue.  I notice my vision is blurred and occasionally I get a sharp pain in my left eye, but it is only momentary.  By evening time my lower back aches but it is not so severe that I need to take pain medication.   Then of course there is my right thumb.  It is swollen but I have been assured this is nothing to do with cancer.  I have to say that when I feel a little arthritic all I can say is not Arthritis too.  Sickness is a lonely journey; KT is so protective over me I don’t want to cause him any more worry than he has at present.  For now, I will leave the book and return to day to day life.

I look at the comb beside my bed and then I remember my hair which is non existent.  I just cannot wear the wig; I am happy with my night hat and my day hat.  After routine of treatment, having me time means I could have coffee at our local Insomnia and meet up with special friends.  April 5th with nobody to meet and a little time to explore I decided to go to the Irish Cancer Society (Charity/Third Sector) in Northumberland Road, Dublin 4, http://www.cancer.ie/ and see if I could gather up some more leaflets.  I browsed and a very engaged receptionist asked if I needed anything else.  I suspect she identified that I had cancer because of my blue hat and no hair falling beyond its tight parameters.  I stuttered a bit; but when she asked if I  would like to meet a nurse if available, I said yes and later was really pleased to have met with Nurse Susan.  It is so important to know that there are people who are there to give advice especially when people are ill.  My experience is negligible support is truly given by the charities related to Depression or for that matter Traumatic Brain Injury.  I exclude both Aware (St Patrick’s Foundation hospital http://www.aware.ie/, the monthly lectures and Headway http://headway.ie/ but their support is limited especially as the years roll on and you adapt to your state of mind and reduced abilities.

Nurse Susan met me in the reception area and brought me to a very comfortable room where we could chat.  Immediately she conveyed that I was in a secure environment and she was there to assist me.  I realised that I had been mulling around side effects but doing nothing about them.  I had forgotten that I was told by Oncology ‘no matter how insignificant a change to call Oncology’.  Susan appropriately did not give me the answers to my questions about my perceived symptoms but she asked when I was due to go to the hospital and said write out a list and give it to the team.  She then asked about my diet and stressed the importance of eating fruit vegetables and importance of a breakfast including some toast, cereal or scrambled eggs.  She said that I could buy frozen fish and vegetables because they retained their nutrients and said to avoid chips and cakes and that it was important to avoid processed foods.  This may seem so obvious but sometimes you just need an outsider to remind you.

Being interested in research for decades now, I asked Susan about Research and the Irish Cancer Society.  She told me there was a comprehensive area dedicated to research and affiliated to leading hospitals.  Then she explained that I might be interested in the “Psycho-Social” aspect of being a cancer patient.  There are two locations in Dublin and it is available to people with cancer and there are talks for cancer patients families and carers, one location is South Circular Road, which is nearest to me and the other is in Eccles Street on the Northside of Dublin.  The drop-in centres of ARC Cancer Support Centres http://arccancersupport.ie/drop-in-centres  Every month you can download their monthly calendar enabling you to plan your day around sessions that there are available.  These include Relaxation and Visualisation; Yoga; Pilates; Knitting Group, Open Men’s Cancer Peer Support Group; Women’s Peer Support Group; Secondary Cancer Peer Support Group.  Also subject to booking you have access to special Citizens Information; Boots Positive Appearance and Carers Stress Management (4 wk programme).  Services by appointment including counselling (short-term), acupuncture, reflexology, Roches wig fitting and breast care services are also provided.  Also by appointment at South Circular Road only you can have manual lymph damage and bio-therapy, metamorphosis, IHM.  There is so much more offered and so practical too.  There is even a workshop on Wills and Probate in April for people affected by cancer (presented by Caroline McCall from the High Court Probate Office) on 26th April.  So much available but thankfully my partner, my canine best friend Freddie, writing, social media especially Twitter means I have learned through past experiences to be alone but not lonely.  I left the Irish Cancer Society in confidence and aware that I am lucky in that the support system surrounds me.  I thanked Susan and I knew that I would write the list.  The blurred vision worries me.

Now it is time to return to Ruth Picardie “Before I say Goodbye”.  It is not Ruth’s narrative that has captured my attention, because every cancer patient travels their own journey but it is that of her husband, Matt Seaton, also a Journalist.  My experience through manic depression, traumatic brain injury, and now breast cancer, it is those closest to you who have to cope with a crisis in your health that impacts on their lives.

to quote sentences that cause reaction within me

“…but in retrospect the lump not only grew within her, but between us, spreading, as inexorably as the cancer itself did.

…You always imagine death as a sudden event, a clear break between being and non being, possession and loss, and for some, facing perhaps the dreadful trauma of losing a loved one killed suddenly in an accident, that is how it must be.

But with a progressive disease like cancer, dying is a relentless attritional process of estrangement.  You so much to do and say the right thing, but you are doomed to frustration, failure and regret.  The only really ‘right thing’ would be to make the person you love well again, and that is the one great godlike task you cannot perform”

The cancer had interpolated itself, sending out its rogue cells to multiply madly and lay waste like an army of termites.  Cancer changed everything; it put us on different tracks, stretching our grasp of one another to the limit and eventually forcing us apart.  In the end, I could not reach her, and it felt like a failure in me. And then she was gone.”

Michelle mulls on this and hopes from the bottom of her heart that if cancer spreads that KT will not suffer in this way because since the day of I met him, waitng for the 46A bus on Morehampton Road, Dublin 4, to go to Church in St Patrick’s Cathedral, while in much despair and ill-health, KT has stood by me through thick and thin and as you will see from the attached link, the journey was one of building self esteem, teaching me how to cope with traumatic brain injury, bipolar, anxiety, chronic fatigue https://canisgallicus.com/2015/03/12/nietzche-he-who-has-the-reason-why-can-deal-with-any-how/  It was November 2003 that KT appeared and he became my advocate to navigate inclusion in a new community without what destiny seemed to be telling me and that was plans made by others to curtail my life to one of routine and constraint.  KT encouraged me to meet people; to talk to them; to write; to engage; to have rows with him especially knowing he would still stand by me and as our dear friend Joe Murray, Barrister, once said to me ‘he makes you laugh’.  Life was a like conundrum, nothing really made sense but somehow in the trail of his confidence, I followed and felt a security that I never had before.  There was a high price, in old fashioned terms, my family “disowned me” ie except on their terms ie brief meetings in hotels or coffee shops and solo.

I know if even the worst happens and secondaries occur, unlike another life, a life of over 14 years marriage, which when challenged with the outcome of traumatic brain injury, that person imposed a life of further hardship to the trauma of the injuries sustained.  He had affairs and ultimately he married the woman who was pregnant with his child and he divorced me.  Therein lies the pain in my life that has created the wisdom and peace that I now have with KT and the security he has created for me.  My divorce cam through in 2000 and I was so relieved to be through the desolation that lasted over four years.  But revenge did not stop with the decision of the Judge in the Family Courts (Divorce).  No there had to be a justification for the woman bearing his child to have recognition as his wife but at the cost of declaring our marriage of over 14 years as non existent, most likely based on the crude analysis called ‘Insanity’.  The Catholic Church said our marriage was void.  I have detailed the experience, especially when you are most vulnerable and a woman, when your case is called before those ‘Men in Frocks’ as KT calls them in the Archbishop Palace https://canisgallicus.com/2015/09/09/pope-francis-bureaucracy-and-costly-system-currently-in-place-for-church-annulments-a-path-to-justice-for-one-condemned-by-men-in-black-in-hidden-canonical-courts/ KT met me in the middle of this hideous affront and he negotiated with the Archbishop and others but the Annulment proceeded; I had no case; most probably as later confirmed that the woman expecting my partner’s child, wanted a Church Wedding, as did her mother. 

I have left this behind; but it has given me strength of character to take each day as it comes and I know KT will have no regrets if anything should result in my passing.  He has fought for me every step of the way and as I say he has given me that sense of security, I never had.

20th April 2018:  Happy Birthday Bud; I am so sad you are no longer meeting me at the Westin.  I must admit avoidance prevents me from going into town because I always associate it with meeting you and knowing that you have passed away, to hopefully a better place and that you are again among the people who were important to you.  Me – I have so little true faith but somehow today suggests fate or faith, created a question.  KT went shopping and returned with a beautiful bunch of deep red roses; the memories flowed in of your rose garden and of course Johnnie who always wore a rose in his lapel.  This could have no significance but then it is too much of a coincidence.  Too add to this it is a beautiful day Rose, the cherry blossom trees are pink and white; and life goes on but the loss is still felt.

Back to the cancer journey, April 10th 2018, I met with Professor Crown and as advised by Susan (Irish Cancer Society) I had a note of the side effects.  The main concern for me was the blurred vision, the occasional dart of sharp pain in my left eye and my fear of aphasia.  Professor Crown carried out the pen test and decided it was time for an MRI.  As yet, I have not received the results so I presume all is okay; and that these are side effects of Herceptin intravenous every three weeks.  I am still struggling with my vision, the dart of pain still exists as does ache in my lower back.  Fatigue also applies but fear could be a large component.  My two main fears in life depression (that requires hospitalisation) or dementia.  A simple problem with spelling creates panic and sometimes when I am typing for KT recently I am finding it hard to work out whether it is the blurred vision, aphasia or recall of spellings.  As bipolar I am allowed to have a little neurosis; so enough of this topic and time to move on.  Today the nurses encountered problems locating suitable veins so when they were told about the MRI it was decided that the cannula drip once put in place for the Herceptin would be used again for the MRI.  I had several hours to wait for the MRI so luckily as always I had a selection of reading material so I had a coffee, read and then went to Radiology.  Thankfully the woman in the chair next to me, who had cancer for 18 years with 10 years remission, warned me about the noise element of the MRI http://www.webmd.com/a-to-z-guides/what-is-an-mri  What a relief she told me and it was exactly as she had said:-  Think of the noise on a  busy construction site and yes it was 30 minutes of this noise – assorted.  No doubt I have had MRI’s in the past but I had forgotten about what is involved.  You basically strip to your panties only your head emerges into a machine and a shield like the one hurling players wear is placed over your head.  You are told to keep your eyes closed and you are given a bell just in case claustrophobia takes hold.  Half an hour later I was free to return home.  Again I am so lucky in that I live near the hospital, just a taxi journey and the receptionist phones for a taxi while you sit in the lobby (like a hotel) and wait.  KT and our dog Freddie were waiting for me; yes I know KT was anxious but this will be the case for a couple of years going forward; that is what cancer is about.  There is no cure as yet but you are called for tests and if the news is good, you are told you are cancer clear for a year.

The oncology team under the direction of Professor Crown suggested that I attend the Oncology Clinical Psychologist, Dr. Isabella.   Tuesday 17th April I attended Dr Isabella at St Vincent’s Private hospital.  It was very helpful but we jointly decided that I have developed over the two decades of being ill a coping strategy and it was unlikely that counseling would be of any benefit to me.  Dr Isabella reassured me that if I felt at a later stage I needed to see her, this would be possible.  We discussed suicide; Dr Isabella explained that any sessions we would have would be confidential but that in the case of suicide ideation, she would be bound to notify the Oncology team.  My belief is that when you are going through cancer it is very important to have the support of a Psychologist as part of your team but in my case due to brain injury and amnesia, I just don’t recall the past or what has happened (hence the reason for journal) and have extremely limited means of creating a plan going forward because I live in ‘Groundhog Day’.  However, I still retain what they call emotional intelligence and I am aware enough to know what I fear and that (as I have said before) is depression and dementia but there are profound reasons for this as you can see from my health history.

I include this article  http://www.the-scientist.com/?articles.view/articleNo/52098/title/A-Neuroscientist-s-Journey-Through-Madness/&utm_campaign=TS_DAILY%20NEWSLETTER_2018&utm_source=hs_email&utm_medium=email&utm_content=62300959&_hsenc=p2ANqtz–yedmPPOtxJQPf5vtXe6HKrwtvQs4F2un5VOthIZXi9X-O9pzp-ij5v3nTrAUjWFtaBRSYM_6tJV07iR49wKGJ9vllwQ&_hsmi=62300959/#.Wt4L4gkbTGI.wordpress because as I have written before my greatest fear is not so much breast cancer but severe depression or dementia.  I had completely failed to take account of brain cancer and when I engaged with my daily dose of curiosity by way of the internet and emails today, I came across the above article.  The words I quote sum up what I must have experienced in the past in the early days of traumatic brain injury which resulted in frontal lobe damage.  I can identify with this description.  I take great heart this woman, a neuroscientist, recovered and retraced the steps enough that she acknowledges that mental health is the poor relation of cancer, especially when it comes to the funding for research.

But unbeknownst to me or anyone else, a full-scale war had erupted inside my brain. Even as the immuno-therapy attacked the tumors that my doctors had irradiated, many new tumors were growing. My brain had become swollen and inflamed, and my frontal lobe function deteriorated rapidly. Soon my personality began to change…… I became increasingly angry and suspicious of my family and my colleagues, certain that they were plotting against me. I began to struggle with reading and tasks that required sustained attention. I behaved in ways that were out of character, sending emails to my colleagues in all caps, the electronic version of shouting, and dispatching an odd, misspelled email to the organizers of a professional conference. One day after work, I couldn’t find my car even though I parked it in the same spot every day, and I got lost going home. Increasingly, I was losing my memory—and my grip on reality.

Yes this describes what I fear most because on occasion I have experienced this level of confusion.  From traumatic brain injury and unexplained changes to psychosis as a result of lithium poisoning, to changes in psychiatric medication involving detoxification,  this irrationality burns into your core being and therein causes the fear of a return to what you possess but cannot understand.

The foregoing may explain why this article http://www.irishtimes.com/…/courts/…court/court-gives-go-ahead-for-mastectomy-on… by Mary Carolan is of particular significance to me.  It concerns a case where a woman lacks the capacity to consent to a mastectomy because a tumour was detected October 2016.  The words of particular significance are:-

The President of the High Court presiding: Mr Justice Peter Kelly, based on medical and psychiatric evidence showed that surgery was in the woman’s best interest.

“The evidence was the woman lacks understanding of and insight into the seriousness of her cancer and lacks capacity to consent to the surgery”

People should never forget that there are times in a person’s life that they may for some reason be deemed to be incapable to make a decision; that they may be made a ward of court; this can happen due to an outcome of ill-health, brain injury, mental health, or just simply becoming old and no longer able to live alone but herein lies the potential for massive injustice and it is a matter for the courts to review the evidence and make a decision on your behalf.  This function of the Judiciary is to weigh up both sides of the argument as to whether the person has the necessary capacity or not.  April 2016, the Assisted Decision Making (Capacity) Act came into existence and is comprehensive.  A good explanation is provided by the Citizen’s Information Board http://www.citizensinformationboard.ie/downloads/relate/relate_2016_04.pdf

A further little piece of insight into dementia and my personal fears.  Oliver Moody, Science Correspondent Irish Times wrote a succinct article with under the heading “Dementia sufferers are still tuned in” http://www.thetimes.co.uk/article/dementia-sufferers-are-still-tuned-in-3h8vlgvxc Research from the University of Utah findings give an explanation as to why patients so often may have lost other faculties but music remains.  For hours I can go through the familiar songs that were core to my development as a human being at the tender ages like Summer Time (Porgy and Bess); to the Beatles in the 1960’s, to Peter Seeger ‘Where have all the Flowers Gone’ to Peter Gabriel, Christy Moore, Sinead O’Connor.  Youtube is so wonderful for me because the prompts are there and once you engage you are taken back decades to feelings and times of significance in your life.  There is a reason according to this article; I agree but I hope it is wrong in that this is the last of the senses to go:-

“The brain circuitry responsible for processing rhythms and melodies appears to be one of the last regions to succumb to the physical damage associated with the disease.  Something about music, and particularly tunes people heard in their youth, seem to make it stick in the memory.  There may be a highway in the brain know as the salience network, which runs from the most primitive regions to the areas handling higher cognitive processing….”Language and visual memory pathways are damaged early….but personalised music programmes can activate the brain”.  I have problems with both.  I cannot visualise or even imagine; my words are limited by Broca and speaking is with effort also.  Writing is okay and it is most definitely enhanced when I have youtube playing songs at the same time as I write.  I hope the MRI does not indicate brain tumours as secondaries.

Back to living in the day, the comb beside my bed reminds me of hair and yes at last my head is no longer bald, hair is appearing so I now know I am responding to treatment. We live in an apartment complex and I have to say my neighbours have been consistent in their good wishes.  I received so many plants and flowers but was surprised to receive another beautiful arrangement tonight (the day of my Mum’s birthday).  The family know about cancer from personal experience and they thought I looked a little tired and hence the kind gift.  It is so important to be part of the community you live in; in the bad times people rally around to support you and this is the return part of everyday engagement.  But there are many kinds of communities and I am a great believer in the potential of the virtual community especially social media and my choice is Twitter.  People who are disadvantaged due to health deficits can engage with others in a similar situation and we can share.  This article is worth reading if you want to know about cancer; about how former President of the US Richard Nixon “Declared War on Cancer” in the 1970’s, the importance but defects of mutations.  This article is not for the faint hearted but if your journey with cancer is time limiting and you want answers, my belief is that ‘Knowledge is no load” and patients have lots to contribute.

Next week, May 1st, is time for my next chapter and it is Chapter 8.  This  article from the Guardian newspaper http://www.theguardian.com/society/2018/apr/22/cancer-mutations-and-the-facts-of-life-evolution-oncogene-robert-weinberg highlights the importance of screening and early cancer diagnosis.  Nobody could have foretold at the time of reading this article that such a scandal would break in Ireland media channels in the last days of the month of April 2018 about both reckless and negligent procedures in the CervicalCheck programme.  A most courageous, gallant, humble, compassionate woman named Vicky Phelan, who as a result of ‘Lack of Candour’ now faces terminal cancer, has been introduced to the people of Ireland and beyond, by television interviews, radio and newspaper articles.  In her own words she stated that the women of Ireland can no longer place their trust in the CervicalCheck programme.

I conclude with this quotation from the article above:-

As American essayist Edward Abbey put it: “Growth for the sake of growth is the ideology of the cancer cell.” While he meant this as a critique of capitalism, he nailed the essence of cancer as well as any scientist has.

 

=============

 

 

 

 

 

 

 

 

 

 

Posted in Uncategorized | 1 Comment

Breast Cancer: Radiotherapy; Oncology Herceptin intravenous: As it is March 2018 and Brain Awareness Month I talk about personal experience with brain injury highlighting Broca. Chapter 6

Wednesday 28th February and Thursday March 1st

The weather deteriorated and by Thursday; it was a taxi to the hospital.  When we phoned to book a taxi I was 35th in line so KT and Freddie, our dog, walked me as far as Ballsbridge and thankfully there was taxi.  It was snowing heavily at this stage.  The taxi driver was elderly but his voice was hoarse and I asked him if he had the flu; and he said no.  He had cancer; he had been four months in hospital, and then 20 months with further treatment.  The hospital team had re-built his voice box.  He was so positive and said that St Vincent’s Hospital is excellent.  As it happens he does the hospital taxi service now.

By Friday 28th February the Radiography department decided to close so appointments for that one day are re-arranged for next week. It is now the month of March and it is my final week for Radiotherapy.  Now I am getting a little curious so I am doing what people say you should not do when you have a cancer diagnosis.  I can’t live in ambivalence much longer so I am back to my friend the internet and Google search.  I know that there is an excellent hospital in the US and it has a renowned name for cancer research and treatment so I engage with the link which I must say is most informative.  http://www.mskcc.org/blog/breast-cancer-treatment-heart-disease-risk

The machine was my next search.  For weeks I have been trying to recall the name so I had my notebook and wrote it down.  There is saying that ‘what you don’t possess you do not understand and while lying on the table for 15 minutes of radiation the thoughts are there as to what is really happening.  So if you have time, this is where technology has advanced so far; in a way it tells us why there should be Centres of Excellence with less hospitals but more advanced technology and the appropriately trained staff to provide same.  People I have met on this part of the cancer journey have traveled from all over the country to have access to St Vincent’s Private Hospital.   https://www.elekta.com/radiotherapy/treatment-delivery-systems/versa-hd/

5th March 2018:  My final week for radiotherapy has arrived.  I will have 19 sessions by the end of the week; but by comparison to others I have spoken with, the number of sessions varies significantly from patient to patient.  Depending on the cancer type the treatment varies.  Some people must drink a container of water within a specified time.  There is the bonus of some Miwadi orange.  I must say I like the idea of random acts of kindness https://www.randomactsofkindness.org/

An elderly woman sat in a hospital wheel chair drinking the water; there was a delay and you could see her concern.  In her case she needed the water in her system and yet the delay meant she was unable to use the bathroom.  I was able to let her go ahead of me. 

6th March 2018:  The Radiographers explained that finally I had arrived at the second phase of the treatment.  This is when the Versa HD specifically targets where the surgeon extracted the cancer from, including a given parameter.  In all this is four sessions.  I have to say that I will look forward to being able to use deodorant again because I was extremely conscious of my body odour because all you are supposed to use to wash is Aqueous cream.

8th March 2018:  Third treatment and third appointment with Professor Armstrong.  Notebook in hand I had 5 points to make.  I have one swollen thumb and having Googled it and arrived at an indicator of bone cancer; it was my first question.  The answer was no alarm here.  Then I have a rash on my neck which Professor Armstrong examined.  Then I could not resist the opportunity of mentioning the machine in Cork http://www.irishexaminer.com/ireland/new-cancer-treatment-to-reduce-radiation-risk-to… and that people with left side breast cancer having complications with heart and often die from heart related problems and not the cancer.  A clinical decision in my case would have arrived at the decision relating to the amount of necessary radiation based on the fact that I have cancer in the left breast.

Today 9th March 2018; A medical team arrived with a man on trolley; an elderly man, approximately the age of my mum who passed away at Christmas.  It had a resounding impact on me because my mum had a massive stroke and the decision was made as soon as she arrived at A&E in the Mater hospital, when my brother assumed control and with advice made the decision for no further treatment.  I was only informed the following day when I noticed there were no drips especially fluid and concerned I asked why.  A nurse in the Special Care Unit told me of their decision and I was very distressed.  There were eight people around her bed (7 not family) and when  I asked my brother why he had not included me in the decision process; I was horrified when those present said this would be my mother’s wish and with no sensitivities to the fact that she may still be aware of what was happening around her made their opinions vocal that she would not want to end up in an old person’s home and a bother to others.  Looking at this man today on a trolley fighting for life by way of radiotherapy and no doubt chemotherapy I felt the decision about my Mum was too swift.  My mum was a fighter and unlike me a person with bipolar who knows depression very well.

Sometimes we creep into the inner self and lose sight of what other’s experience.  Today I spoke to Anna who is from Romania and works here in Ireland.  She explained that a good friend had traveled back to Romania to attend a doctor; she had a pain in her tummy.  She was diagnosed with colon cancer but it had advanced too far.  Anna explained that in Romania the treatment costs money and this woman aged only 48, a mother of a son and daughter, and is now in Blanchardstown hospital, on morphine, with 4 weeks to live.  Anna was very upset and explained that this woman cries most of the time.  It must be so hard to be away from your home country and your extended family; without support.

Monday 12th March 2014:  No more radiation so I am more free than I have been in many months.  I was give an A4 sheet with advice for post radiation treatment so I will adhere to this and will continue to use the Aqueous cream.

‘Opportunity comes to pass not to pause’.

This week is Brain Awareness Week and it is global.

Ireland held its Brain Awareness Week 5th March to 11th March 2018 www.nai.ie/go/brain_awareness_week
The Brain Awareness Campaign is a worldwide celebration of the brain that brings together scientists, families, schools, and communities. Although Brain Awareness Week is officially March 12-18, 2018, there are many ways to get involved throughout the year.  The global celebration, launched by The Dana Alliance for Brain Initiatives, presents an opportunity to bring attention to brain science advances and advocate for science funding. Brain Awareness Week serves as a launching point for year-round Brain Awareness activities.
To include my personal contribution about Aphasia and traumatic brain injury:-

1993 while horse riding in Zimbabwe, I sustained a fractured skull, contrecoup https://en.wikipedia.org/wiki/Coup_contrecoup_injury brain injury in a horse riding fall.  In those days so little of what we have now existed but I was fortunate that the computer technology was in fast forward momentum.  I had my own computer in Zimbabwe and when I returned, my Mum bought be a computer; then came the internet, social media and so many other sources of learning on how to understand brain injury and how to cope evolved.  As this is Brain Awareness Week – I would like to talk about “Broca” http://www.aphasia.org/aphasia-resources/brocas-aphasia/ which can happen if you have a stroke or with brain injury.  So often people finish your sentences, reprimand you for not being descriptive in your spoken word and so much more:  I am going to include a piece about what Broca really is so that if there is anyone out there with such a diagnosis, do not heed what others say, just rest assured there is a narrative that explains what it is.  I have gone through 25 years not understanding what this simple word called Broca (frantically written in my notebook so that I could find an explanation) really means and this is what has enlightened me and given me confidence.  Progress is possible.  It may take time but you can go forward.  I have selected excerpts from this link that I identify with, as a person with traumatic brain injury and for others who need reassurance when something changes about their communication abilities but that they just don’t understand or can tells others about.  This link is from the Stroke Association in the US so it is thorough I hope that people who have Aphasia are supported. It connsolidates my belief in the necessity of taking responsibility about health outcomes especially when you arrive at my stage of co-morbidities.

http://www.strokeassociation.org/STROKEORG/LifeAfterStroke/RegainingIndependence/CommunicationChallenges/Types-of-Aphasia_UCM_310096_Article.jsp#.WqK9mHzLeJA

People with aphasia:

  • May be disrupted in their ability to use language in ordinary circumstances.
  • May have difficulty communicating in daily activities.
  • May have difficulty communicating at home, in social situations, or at work.
  • May feel isolated.

“Scientists and clinicians who study how language is stored in the brain have learned that different aspects of language are located in different parts of the left hemisphere. For example, areas in the back portions allow us to understand words. When a stroke affects this posterior or back part of the left hemisphere, people can have great difficulty understanding what they hear or read.”

I have excluded details about comprehension because this does not apply to me thankfully.  I can listen, I can take notes, I can read silently albeit slow with focus problems.  However, expressive this explains so much for me.

Broca’s Aphasia (expressive)

When a stroke injures the frontal regions of the left hemisphere, different kinds of language problems can occur. This part of the brain is important for putting words together to form complete sentences. Injury to the left frontal area can lead to what is called Broca’s aphasia.

Survivors with Broca’s aphasia:

  • Can have great difficulty forming complete sentences.
  • May get out some basic words to get their message across, but leave out words like “is” or “the.”
  • Often say something that doesn’t resemble a sentence.
  • Can have trouble understanding sentences.
  • Can make mistakes in following directions like “left, right, under, and after.”
“Car…bump…boom!” This is not a complete sentence, but it certainly expresses an important idea. Sometimes these individuals will say a word that is close to what they intend, but not the exact word; for example they may say “car” when they mean “truck.”
A speech pathologist friend mentioned to a patient that she was having a bad day. She said, “I was bitten by a dog.” The stroke survivor asked, “Why did you do that?” In this conversation, the patient understood the basic words spoken, but failed to realize that the words of the sentence and the order of the words were critical to interpreting the correct meaning of the sentence, that the dog bit the woman and not vice versa.

Global Aphasia:

  • Remember, when someone has aphasia:
  • It is important to make the distinction between language and intelligence.
  • Many people mistakenly think they are not as smart as they used to be.
  • Their problem is that they cannot use language to communicate what they know.
  • They can think, they just can’t say what they think.
  • They can remember familiar faces.
  • They can get from place to place.
  • They still have political opinions, for example.
  • They may still be able to play chess, for instance.
The challenge for all caregivers and health professionals is to provide people with aphasia a means to express what they know. Through intensive work in rehabilitation, gains can be made to avoid the frustration and isolation that aphasia can create.
Excerpted from the article “Talking Tough?”, Stroke Connection May/June 2004 (Last science update March 2013)
For most, a stroke has a startling and life-altering effect on both the survivor and family members. All involved find themselves trying to come to terms with changes ranging from physical and sensory loss to loss of speech and language.
For many survivors, this loss or change in speech (dysarthria, apraxia) and language (aphasia) profoundly alters their social life. Ironically, research has shown that socializing is one of the best ways to maximize stroke recovery. Many experts contend that socializing should begin right away in the recovery process.
For many people living with aphasia, dysarthria or apraxia, the question then becomes: How can they socialize if they can’t communicate the way they used to?

Here are some tips you can use to begin your recovery:

  • Educate yourself about aphasia so you can learn a new way to communicate.
  • Close family members need to be involved so they can understand their loved one’s communication needs and begin to learn ways to facilitate speech and language.
  • Experiment with strategies that facilitate social interaction during your rehabilitation.
  • Many stroke survivors with communication challenges compensate by writing or drawing to supplement verbal expression, or use gestures or a picture communication book, or even a computer communication system.

Family members can facilitate communication with some simple techniques:

  • Ask yes/no questions.
  • Paraphrase periodically during conversation.
  • Modify the length and complexity of conversations.
  • Use gestures to emphasize important points.
  • Establish a topic before beginning conversation.
Your environment also can help support successful socialization. Survivors have told us that it is easiest to begin practicing conversation in a one-on-one situation with someone they are comfortable with and who understands communication disorders.

In addition:

Practice conversation in a quiet, distraction-free environment.
  • As you become more confident, slowly add more conversational partners but continue to limit distractions such as background noise (music, other talking, TV).
  • As you become more comfortable in one-to-one or small group interactions, explore less-controlled social situations with your speech-language pathologist, close friends and family, or other stroke survivors.
  • Before you attend these gatherings, practice common things discussed in a variety of situations. For example, “How are you?” “It’s been a long time since I’ve seen you.”
  • Practice a few statements about current events: “Did you see the basketball game?” or “Boy, we are having beautiful weather!”
  • The more you practice this script, the greater your chances for success.
  • Family members can prepare written cues, or organize pictures to promote interactions.
  • Once you achieve a level of comfort with close family and friends, you can start getting involved in the community by:
  • Going to familiar large group activities such as church events or weekly social gatherings.
  • Volunteering, returning to work or joining a new interest group.
  • Remembering there’s no rush. You should step into this stage at a comfortable pace.
  • Attending a stroke support group.
Speakeasy is a conversational practice group in Cleveland, Ohio that meets weekly for two hours. Its members have a chance to practice their communication skills and gain confidence in their ability to communicate.
Speakeasy’s tips for communicating with speech and language limitations in social settings:
Try, try, try to get your point across no matter what anybody says or thinks.
If waiters speak too fast when you go out to dinner, ask them to slow down.
Try one-on-one conversations.
When talking on the phone with a new person, repeat, “I’m a stroke survivor…can you understand me?”
Make a point to go out and interact with people — socializing is an important part of recovery.
No matter who tells you that you can’t, it’s always possible to keep recovering!
Remember that the speech and language changes stroke survivors experience can last a lifetime in some form or another. As life circumstances change, and your speech and language needs evolve, reevaluate what works and what has not worked in social situations. And continue to expand your horizons.
For more information on aphasia or to find an ASHA-certified speech-language pathologist in your area, call ASHA’s Action Center at 800-638-8255 or visit ASHA on the Web at www.asha.org.
Check out link above/below for details about Constraint-induced therapies (CIT).  There is a list links for appropriate articles related to Aphasia.  http://www.strokeassociation.org/STROKEORG/LifeAfterStroke/RegainingIndependence/CommunicationChallenges/Types-of-Aphasia_UCM_310096_Article.jsp#.WqK9mHzLeJA
Now it is time to return to to breast cancer:  My next appointment is with the surgeon Mr Geraghty for a review since breast surgery.  These appointments make me so aware as to why I am ill at ease meeting these professional people, it is about conversation and memory which are so difficult.  For me, Twitter is like an Artificial Intelligence input that allows me communicate at the level I would like to be at.  This was my way of coping with Aphasia and thankfully Professor Crown understands this as he too is a Twitter friend.  Before I leave this insert about brain injury; here is a link if you are interested in further details about brain injury/stroke  https://www.sfn.org/public-outreach/brain-awareness-week

14th March 2018: I was notified by text of my appointment with Mr Geraghty at the outpatients in St Vincent’s University Hospital.  I was confused about the change of location so KT phoned BreastCheck Merrion Road, and it was confirmed that it was SVUH, first floor, Suite 4.  There is a reception area; a waiting area; and then different rooms for different consultants and doctors.  Hayley was the doctor who met with me and did the necessary examination of both breasts.  It was a brief but detailed examination and I left confident in her professional ability to carry out the necessary examination.  Hayley explained that I would receive a call from BreastCheck in August for a follow-up examination; and this would be followed with a further visit to Mr Geraghty.  Once you have been diagnosed with cancer, the health system monitors your progress and you have access to medical treatment.  This is most reassuring and unlike what you experience in the highly privatised insurance related American system of health.  Ireland thankfully is more aligned to the NHS but some say we are undergoing radical change in favour of the punitive for poor people American system.  For people in doubt about what kind of health system Ireland should have I would recommend this TEDMED talk about the Pharmaceutical Industry and how disparities for those rich and those who are too poor are designated in the US.  http://youtu.be/ulADmDZ9hu8

As I have written earlier my mother has always paid for my membership of Voluntary Health Insurance.  I would not have been in a position to pay for it.  This puts me in the fortunate position of undergoing treatment for breast cancer as a private patient, for which I am grateful.  My mother passed away at Christmas and I notified her solicitor that I was anxious that the VHI be paid either from her estate or by alternative means.  My mother’s solicitor assured me that the VHI would be paid and that I had no reason to contact the VHI so naturally it was my understanding that my mother’s solicitor had dealt with the matter.   I further explained to him that I am in the middle of treatment for cancer so I reiterated to him the importance that cover be maintained.

By the middle of March 2018, for some unknown reason, I became very anxious about my VHI cover.  I didn’t know the renewal date and whether I could rely on my mother’s  solicitor to ensure I was covered going forward.  The fact that  I had already started on the private healthcare path and the reality that treatment for cancer is so very expensive, made me even more anxious.  After a few days I phoned the VHI (I have given details on Broca so I very seldom use the phone).  The people with authority to work on my deceased mother’s behalf, had cancelled the VHI including cover for me the day after my Mother’s funeral.  Nobody had the humanity to notify me and by pure chance, that inkling and anxiety, proved to be my guard dog.

The VHI staff proved to be exceptional when I phoned.  They had sent renewal forms to my Mother’s home.  They did not have any details (other than I was covered by the my Mother’s policy) for me.  When the policy was cancelled January 2nd 2018 “the person with authority” said they did not know my address.  With direction and guidance from the staff at the VHI, who being privy to this and having decided not to cancel the policy until they had made contact with me (the bills were already in their system), I had the forms sent to me directly and KT worked out the best plan and that I would pay by direct debit from my account starting April 1st 2018.  It is important to note that this policy was cancelled on January 2nd and this is true because I had to pay by Visa card an amount of e800 for January, February and March.

20th March 2018:  My letter to confirm my next appointment with Professor Armstrong (Oncology Radiology) is scheduled for Thursday 17th May 2018 at 9.30 am.  Everything is falling in line like clockwork and my humble opinion is that this is because Cancer works through a system of Excellence in care.  You may have to travel to the Centre of Excellence but once there the treatment is scheduled and the system works.

Time for the next dose of Herceptin 2.  I arrived at 2 pm and was out by 4.30 pm.  It was a short week because of the bank holiday so all members of the team worked exceptionally hard to compensate for the lost day.  This link shows how the over indulged insurance based system in America provides information about costs.  http://www.truemedcost.com/herceptin-price/

People constantly ask me about Herceptin 2 and this link gives more than enough information but I will just give the basics here:-

Note the costings of the treatments are in US$; we do not have this transparency in Ireland.  Every patient should have access to every cost relating to specific treatments.

Herceptin is a monoclonal antibody that is used for the treatment of breast cancer. It is also prescribed for treatment of stomach cancer. Herceptin is only recommended for patients whose cancers are HER2-positive, characterized by the growth of the protein called human epidermal growth factor receptor. According to experts, 1 out of 5 cases of stomach and breast cancer are HER2-positive.

Nostalgia, mourning, grief and as I listen to this song by Neil Diamond from 1972 – Morningside https://www.youtube.com/watch?v=N5RY97qvtzk  it reminds me of my Mum, widowed at just 46 years of age, left with two children and a dispensary practice. https://www.historyireland.com/18th-19th-century-history/pre-famine-public-health/.  Dispensary practices were about public health provision.  It was 1977 and it was competitive times.  After two years working alone, seven days each week, the dispensary practice was advertised by the Health Board and what surprised us then was that the doctors in the adjoining practices callously sought her means of livelihood.  The Health system permitted my Mum to work for over two years (without any support from a locum doctor) covering the area from near Ashbourne to near Trim and then they decided she had to be interviewed and the practice was divided in two.  (For over a year I worked with her doing the paperwork and other tasks).  Dr Tierney was to take half my parents practice; leaving my Mum with the other half.  The Health Board chose the Navan Road as their dividing line.  The Dispensary house, Belper, Tara, where I lived until I was 18, was sold by the Co. Council and my Mum moved to Skryne, Tara, the other side of the Navan main road.  My Mum received 4 acres of land from her cousin James Comyn and she built her home on that land.

Why do I write this? It is the sadness of 1977 when I said Goodbye to Belper, my home but at least there were memories because just like the table this man carved existed only in a different way; what is most poignant is the patient’s files and my Father’s handwriting which remained on the chart files through the decades to when my Mother retired 2 years ago.  The sad part is that I have been given no access to that home for many years now; and now three months after my Mum’s passing I have no means of connection, as in the words so beautifully scripted in this song, to my Mum’s final days in her home so all memories are excluded from me because I am allowed no access.

Posted in Uncategorized | Leave a comment

Breast Cancer:- Chapter 5 (Highlights of San Antonio, Texas Breast Cancer Symposium 2017 – “SABCS” written by three NICB cancer researchers included) Chemotherapy over; Herceptin going forward and Radiation February 2018

6th February 2018:  Back to Oncology, 3rd Floor, St. Vincent’s Private Hospital, Dublin 4.  This time the chemo is over but it is time for Herceptin treatment by drip.  The coffee is free but when you look around the waiting area and see different people who are at different stages of treatment you get that chill up your spine of fear.  It was time for me to go again for an ultrasound which is necessary every so many weeks especially when you are receiving Herceptin.  I found my way to Cardiology on the first floor.  I was thinking about my trip to the vet who had said our dog Freddie needed a ultrasound so this primed me to be very attentive to what it was all about.  Niamh gave me a gown and told me how to position myself on the couch.  Technology has advanced so far.  It is so interesting watching the screen and seeing your heart and other measurements.  Niamh from Monaghan had a great personality and diligently chatted while looking at the screen so that she and the machine provided the charts that would say my heart was in order and Herceptin could be administered.  I have to say I learned something too.  The qualification is called Clinical Measurement and it is a 4 year course in DIT (Kevin Street).  http://www.dit.ie/catalogue/Programmes/Details/DT229

When morning came and I woke up the thought was there – what if I just didn’t bother going to Oncology;  you know just simply like not turning up for an appointment.  KT would not approve of this so I put that thought aside as being foolish and prepared for the day.  You may think you are alone in the world but when you engage you never know the surprises that lie in store for you.  On the bus I met someone I knew, her name is also Michelle.  We had spoken often about the effects of traumatic brain injury and exchanged experiences, mine being personal, and her’s related to her son.  When I told her that I had cancer, she just looked at me and said you have got over so much in the past, this is easy and you know this.  Michelle gave me that reassurance that I must keep my spirits up because there are people who really care.

Too add to co-incidences, the other is really incredible.  I am standing at the reception desk in Oncology and I am looking at this face that hasn’t changed since she and her Mum stayed with me in Harare, Zimbabwe, when she was just about 12 years old.  As you know my Mum Eleanor Rose passed away at Christmas and this young woman named Elinor who Mum knew since she was a baby was talking to the receptionist and all of sudden I knew her face and I gently called her name Elinor and yes it was Elinor, now a young Mum of three small children.  When we were called to meet with Professor Crown, my name was called first and Elinor was second.  There was something spiritual in this meeting.  Being 20+ years older than Elinor I left the hospital with a different resolve to my early morning horrors that answers must be found to breast cancer and all other cancers.

The Plan:  Herceptin 2 intravenously every three weeks; Chemotherapy is over; it is no longer about arriving at 9 am in the morning but instead it is 2 pm.  This time it is only every second visit that they need to check your bloods.  Professor Crown unlike previously when he did his rounds to his patients, this time we met him in his office.  The computer and the chart were there and he confirmed that my hormones were in order so there was no need for medications (I think this means that I am hormone negative) which means that when you are Herceptin positive as I am that this leads to the best results.  This is the way I understood what Professor Crown was saying but as I did not have my notebook, I may not quite grasp it.  I asked the nurses who said that when you are oestrogen negative, you need no hormones.

A little diversion time:  What is the Research in Ireland?  How does it link to US, to EU, to UK to China and elsewhere?  Where do I start?  Let me start with Twitter @canisgallicus.  Since 2010, Twitter is part of my daily routine.  Traumatic brain injury affected my memory and Twitter has become the prompt I need to engage with the day.  What I have is my pre accident memory ie prior to age 32 and that which happens within the day.  Add to this KT and his vast intelligence, humour and character and I have a daily routine that works for me and let’s me live a life of independence.  So where did I go to on Twitter: for a start it must be Professor Crown and then I follow link by link until I find something that I can make a connection with.  I arrived at this Tweet.  https://twitter.com/nicb_dcu?lang=en;

This led to the following which I would recommend. 40 years on and oncologists from all over the world convene in San Antonio, Texas, US.  It will take some time to read and listen to the video talks but the advances speak for themselves.  The link is as follows:-  http://nicb.ie/biotechnology/highlights-san-antonio-texas-breast-cancer-symposium-2017/

Just some notes to encourage people to engage with the above link; the writing is technical but the three videos give essential insight into the progress made in relation to breast cancer.

Highlights of San Antonio, Texas Breast Cancer Symposium 2017 – “SABCS”

.

This post was written by three National Institute for Cellular Biotechnology “NICB” cancer researchers: Neil Conlon, Alex Eustace & Denis Collins, with equal contributions from each

Texas is known for big cars, big hats and big steaks but for five days each year one particular corner of the Lone Star state is known for big research. The CTRC-AACR San Antonio Breast Cancer Symposium is in its 40th year and remains one of the premier global meetings for clinicians and scientists focused on breast cancer research. Breaking clinical trial results and the latest scientific findings are presented to an international audience of around 7,500. After 40 years, the Symposium is a well-oiled machine, now with a helpful phone app to organise the talks you want to attend.

Insights you can investigate if you engage with the SABCS link provided:-

  • SABCS started in 1978 and this evolves into 40 years of progress against Breast Cancer.
  • Technology enables multi-disciplinary teams and people to be long distance mentors
  • Neil Conlon, a PhD student working for BreastPredict, was funded by the Irish Cancer Society, to present a Poster at the SABCS conference
  • 8,000 participants coming from 90 countries
  • Increased role of patient advocates
  • We have now moved from focus on specific gene to Big Data
  • Professor Slamon: Revlon, EIF and Los Angeles raised the initial funds for his research (video a must for people diagnosed with HER2-positive.). 1971 was the year when America declared the War on Cancer.  At that time there was considerable sums of money available but no technology; now we have the technology but we need funds raised through research.

Again I am enclosing the link because it is most informative and the video’s give the background that is essential to understand if you have a diagnosis for breast cancer.  Personally I would advise people to use Twitter and engage with the links made available.

http://nicb.ie/biotechnology/highlights-san-antonio-texas-breast-cancer-symposium-2017/

Radiation at St Vincent’s Private Hospital – week 1 and ending 8th March 2018

I received a phone call to say an appointment was made for me at 7.30 pm Monday 12th February 2017.  I accepted even though I knew my stamina would make this virtually impossible.  KT decided to collect my medications and when chatting to Seana and the staff in Boots Pharmacy, they sensibly (because they know me for over a decade now) that we should ask to change the appointment to an earlier and more suitable time, a time that fits in with my rigid but necessary routine. KT phoned and the appointment was changed to 11.30 am.

Monday 12th February 2018, the day of my first appointment, I left home at 10.30 am to get the bus to St Vincent’s hospital (a short journey of about 10 minutes by bus and 30 minutes walking).  Thankfully Bus No 4 and No 7 are frequent.  I arrived at the Radiotherapy building, I had already been given what resembles a credit card which has a bar code and with a reminder from the receptionist I checked in and went downstairs to await my first session of radiation, scheduled to last about 20 minutes.  Book in hand as always, I got a cup of water from the dispenser and I sat in the waiting area until it was my turn.  The staff were young and very kind.  It is not so easy when you are in your fifties to be naked from the waist up.  The machinery is complex; the members of the radiography team make the calculations and arrange your body in the best location and radiation starts.  You feel nothing.  You must lie still but at the same time be relaxed.   I was given the dates and times for all forthcoming 19 appointments which are at different times each day so you really need to concentrate and make sure that you know the time of your appointment and arrive on time.  The men who were waiting seemed to know each other and chatted but I just read my book until it was my time for radiation.  The equipment I cannot really describe but the large screen with all the personal information which enable a number of people to be involved is impressive even when you see that photo of yourself that you hope is not you.  Add to this the mirror which tells you – exercises and weight loss needed.

Side effects:  After the first week; well I don’t really know.  It is beneficial when undergoing this treatment to have the amnesia that often goes with traumatic brain injury so that there is no time to dwell or recall what actually happens.  The only disadvantage was fatigue; where the body just gets so tired and you need to sleep so on several days I returned home and slept for a few hours.

Day 1 I had that little zest of energy; an elderly person I know was admitted to St Vincent’s University hospital several weeks before and I had not felt able to visit.  I took the opportunity to cross over from the Private Hospital to the Public Hospital and then to Our Lady’s ward.  I have to say that acknowledging that people awaiting hospital may spend a long time on trolleys the standard of provision of care in the public hospital is impressive.  Nurses and nurses aides do incredible work and get very little acknowledgement.  Add to this the social worker and their commitment to the care and-direction of the person back to their home or into a care home, it is most re-assuring.

I left the Herbert wing and went through to the main reception area of St Vincent’s University Hospital.  Every few months I get my lithium levels checked there.  I know that in the main area there is a dedicated space the Irish Cancer Society – Daffodil Centre which makes available free Cancer information, support and advice.  It is impressive and it is free.  As you can imagine there are many booklets and leaflets relating to all kinds of Cancer and advice.  The Daffodil Centre is open Monday to Friday 8.30 am to 4.30 pm.  This is backed up by a National Cancer Helpline 1 800 200 700 (www.cancer.ie).

It was not long before Mary noticed me and approached me in a reassuring way.  I explained that I had my first session of radiation and really up to now I had not really grasped what radiation was about and that I had concerns that if my private health insurance ran out what would happen?  How would I be transferred into the public health system?  Thank fully Ireland is not America so it is possible if you are no longer eligible for private healthcare to move to the public health system.  Mary then printed out 9 pages about Radiotherapy and breast cancer.  http://www.cancer.ie/cancer-information/breast-cancer/treatments/radiotherapy

America – USA and Healthcare.  Having worked for a number of  years for an American Investment bank in London, I know that health cover was part of the package there so I have been to Harley Street, having first attended an excellent NHS doctor.  I therefore the privilege of the referral to Harley Street. Recently I read in the FT (Financai Times) magazine about the American system controlled by Health Insurance resulting in many people being illegible for cover.  I include the link and recommend the article because Ireland’s health system continues to be in crisis like the NHS and the model we are looking to is America and not that of the EU which favours a more social based model.  Ideally, health provision should be a human right and nobody should be a victim of non provision of crisis treatment.  Details below:-

“Click to Donate” by Barney Jobson (about the broken US healthcare system): published 13th/14th January 2018.

https://www.ft.com/content/b99a81be-f591-11e7-88f7-5465a6ce1a00

Jan 10, 2018 – Online donation sites are booming as patients with little or no health insurance turn to strangers to help pay medical costs. … For the most fortunate Americans, these costs are covered by comprehensive insurance plans. … Eventually they relented — and joined the thousands of US …

</

 

The Question is why the foregoing:-

I diverged again so I am now returning to Mary at the Irish Cancer Society Daffodil Centre at St Vincent’s University Hospital. Re-assured with leaflets from the Irish Cancer Society on Radiotherapy, Radiotherapy and Breast Cancer, the Emotional Effects of Cancer; a diary named the Journey Journal, I left in the knowledge that my treatment will continue and as yet it will not be necessary in Ireland to have to crowdfund for treatment.

Week 2 – 18th February 2018
A deep breath and a little courage and off I went to Radiography building at St Vincent’s Private hospital, Merrion Road, Dublin 4.  As I crossed the road I saw this man with his tannoy and a notice.  I knew he must have had something important to say about BreastCheck.  It is not easy to stand at the side of the road and make a statement in this busy world we occupy.  His wife died from cancer.  His mission is to encourage a change within BreastCheck so that they take account of the fact that when they send out letters to women (age 50-66) that they follow up when there is no attendance or no response.  We both immediately understood why some women do not take up the option for the mammogram and it comes down to that word called FEAR.  It this same FEAR that prevents men from checking out prostate cancer and fear concerning check-ups for cervical cancer.  If we are to trust in the medical team who take on the responsibility to care for their patients with breast cancer or any other of 200 cancers known to exist, we must ask them to re-iterate to people the importance of early screening and the significance that this plays in either stopping the cancer from progressing or limiting the potential of mutations and the horrid implications if cancer spreads.  Today – it hit really to the core of my being when I saw a woman waiting, having evidently come directly from the hospital, sitting in a wheelchair so very ill.  All I can say to people is that if you can go for a screening, if you are a teenager and can receive a vaccine, be brave and go ahead.  Cancer is to be avoided at all costs or limited at least to a minimum.
22nd February 2018: Another session of radiotherapy but today is different I have an appointment to see Professor John Armstrong, Consultant Radiologist Oncologist.  After radiation treatment I returned upstairs and waited until I was called.  Technology is so advanced in some ways.  All I needed to do was present my card with the bar code for my file to appear on Professor Armstrong’s screen; but I must say I feel relieved when I see that the medical profession still rely on hard copy files but the key is that this file also has your bar code.  Professor Armstrong asked me about side effects and I reported fatigue.  He asked about what creams I was using which of course is as recommended Aqueous cream, nothing else.  Being naive I asked the question that if I have gone through 9 sessions can you tell progress and eradication of cancer.  This is a question I would not have asked if I had watched the Memorial Sloan Kettering youtube link which I now attach.

Oct 6, 2015 – Uploaded by Memorial Sloan Kettering
Medical oncologists at Memorial Sloan Kettering explain why targeted therapy represents one of the most ….     http://www.youtube.com/watch?v=7ojmW80bDRg  I am on Herceptin.

Friday 23rd February 2017.  My appointment was for 11.45 today and that sense of yet another week over was so refreshing especially when you know that the team in Radiography at St Vincent’s Private hospital have their weekends free from a busy 8 am to 8 pm daily routine, Monday to Friday.  Still a little unsure about the radiation, I asked for a little more clarification.  This very pleasant radiographer explained that in my case the surgery had removed the cancer; the radiotherapy was like an insurance policy to eradicate any rogue cells; she explained that clips are inserted during surgery and these indicate where the cancer existed.  The last 10 days the radiation targets the full breast and within a few days of the 19 sessions then the radiation will target where the clips are positioned but with greater intensity.

Week 3 – Monday 26th February 2018

“The Beast of the East” (snow, wind, rain and blizzard) is due to arrive but alarm is not on my agenda these days.  It is getting to St. Vincent’s Private Hospital for radiotherapy. Each day the weather got worse but people with cancer are aware that certain deadlines just must be adhered to especially when radiotherapy and chemotherapy are concerned.  As the week progressed you would people making more of an effort and arriving ahead of their appointments which enabled the team of radiographers to handle their caseload each day efficiently and effectively.  Humility is something that comes to mind when you here of what another person has to go through with their cancer diagnosis.  The weather was getting worse; Red Flag was the message.  I started talking to someone beside me.  He had traveled by train from Longford to Connolly Station; then I think he said the Luas and then the Dart to Sydney Parade and then he walked to the hospital.  He had fed his farm animals that morning.  He did not know if he would make it home to feed them and if he did if there would be water for them.  I have to attend Radiotherapy for 19 consecutive days (weekends excluded) but this man has 30 days and he has the journey from Longford by public transport.

Tuesday 27th – it was a session of radiotherapy first; and then it was a visit to Oncology third floor St Vincent’s Private Hospital.  Chemotherapy is over so the appointment was for 2 pm and Donna was the nurse assigned to me.  The waiting area was full of people and it was a busy day for the team.  I was delighted to see a face I knew and we got the opportunity to have a brief chat.  Donna checked through my chart and asked the necessary questions about side effects and mood.  Donna then suggested if I would like to see a psychologist with a specialty in oncology.  I dithered but thanks to her diligence I decided I would attend and would await an appointment.  Professor Crown checked through the file also and confirmed that from now on my treatment would be upward and he recognised that I was the person who has followed his twitter account for a few years now. (@canisgallicus).  It was time for my intravenous Herceptin and finally I booked a taxi and returned home.

Conclusion:-

Another month passes and I am drifting just like the snow.  I  can only conclude that the memory deficits and dimmed executive functions that slow my day to snail’s pace are now to my benefit because I seem to have arrived at this stage of treatment for breast cancer without any tangible memories of same.  It all comes back to that quotation of Lewis Carroll ‘It is a poor kind of memory that only works backwords’.  The power of being within the day in the time of the internet with social media like Twitter works in my favour on yet another health related journey, only this time it is with breast cancer.  I have just found a press cuttings (yes I collect them in my diary and more often than not when too many exist, I bin them), however this relates to cancer and something I did not understand and now do.  Written by Catherine Shanahan and published in the Irish Examiner “New cancer treatment to reduce radiation risk to heart http://www.irishexaminer.com/…/new-cancer-treatment-to-reduce-radiation-risk-to-hear.

In my case, this is relevant.  The cancer is in my left breast.  Recently I had a heart echo without really understanding the significance.  Referencing and quoting from the article explains accordingly:-

In the case of left sided breast cancer patients, there is a new radiotherapy service, Deep Inspiration Breath Hold (DIBH); its purpose is to reduce radiation doses to the heart.  The launch took place at Cork University Hospital (CUH) and “should immediately benefit 60% of its breast cancer patients” …. an average of 180 people a year.  I asked a member of the radiation team in St Vincent’s Private Hospital and it was explained that the machine used had the capacity but was not yet adapted for same.  Presumably this has to do with cost.  It is important to ask questions now because as the article states “This has long-term benefits to the patient and reduces the rate of morbidity and mortality”.  The HSE go on to say that this new therapy “was enabled through a multi-disciplinary effort in CUH’s radiotherapy oncology department”.  The funding was provided by an independent charity Aid Cancer Treatment (based in Cork).

Aid Cancer Treatment (ACT) – EverydayHero
https://nfp.everydayhero.com/ie/act

Aid Cancer Treatment is a completely voluntary organisation based in Cork. We aim to help those diagnosed with cancer in a practical way by helping to fund the latest equipment necessary to treat cancer refurbishing and redecorating the waiting rooms and wards where those diagnosed spend the majority… Continue …

Below is a link to my health history from 1993 to 2016

https://canisgallicus.com/2015/03/12/nietzche-he-who-has-the-reason-why-can-deal-with-any-how/

I include this because for a number of years I was diagnosed and severely debilitated by Chronic Fatigue syndrome.  The fatigue from both chemotherapy; or radiation did not compare to the impact of that ‘drop dead exhaustion’ experienced with chronic fatigue.
There is some research into link between chronic fatigue and breast cancer – see link.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2978315/

To my partner, carer, best friend for over 14 years.  This song says it all.  Roy Orbison

https://youtu.be/dO1rMeYnOmM

==========================
3,830 words

Posted in Uncategorized | Leave a comment