I have written extensively on my experience and luck as a result of being called for a Mammogram and thanks to the fact that my partner KT ensured I attended. If it had been a cervical cancer check, I would be like so many others and just bin it and take the risk. If you read the other posting you will know that I am one of those very fortunate people, who had no symptoms (maybe a little fatigue) who attended BreastCheck Merrion and the story continues today with the ending unknown.
I must also add that I am a woman in her fifties who still has VHI health cover, not because I pay for it but because my mother continued to pay for it. My health history is comprehensive and you will find the details in this link which includes my health history since I sustained a traumatic brain injury in 1993: BreastCheck – an appointment: Diagnosis cancer August 2017. No signs prior to visit.
Health Insurance means you have access to private medicine. It is worth noting that many parents and even grandparents decide to keep their grown children/grandchildren on their healthcare plan. My experience is that often when a person enters hospital they do not use their private insurance card. This needs to be addressed by the HSE and claims in arrears should be targeted as a means of funding the HSE which is in chaos as a result of bureaucracy as distinct from action. So the key is you attend the relevant consultants and their office give you a Code which dictates what and what is not covered for the process of treatment. You meet with consultants, you pay their fee and thereafter your plan covers your treatment or you hope it does. Enter fear, stress, nerves what happens if the VHI won’t cover certain treatments and you are not in a position to pay.
20th September 2017
I met with Professor Crown Oncologist at St Vincent’s University Hospital. My partner KT attended and Professor Crown outlined clearly what he proposed. He took account of my psychiatric medications, especially the lithium, I gave him my health history Nietzche ‘He who has the why to live can bear almost any how’ co Morbidities: is there a better way? both by email and hard copy. I knew enough to say that I would trust his judgment aware that a team had discussed my case. On the funny side just to let you know why my partner often refers to me as Clouseau of Pink Panther origin because of my ability to virtually wipe the slate clean on a daily basis (due to traumatic brain injury 1993). KT does all the talking and whenever we get into a waiting room he starts on about sport and before long the chat is vibrant. We met this man in the waiting room and the chat started. As usual I was quiet, listening and all of a sudden the man starting talking about his stay in the hospital and looking out at Elm Park golf club (and so few people playing golf). All of a sudden I perked up and said – you have stayed in this hospital, what is it like, what is the food like? KT looked at me and said … what are you talking about you stayed in the hospital a few weeks ago, so you know. A laugh.
Professor Crown mentioned the side effects and the possible loss of hair and told us that they would be in contact in the near future. We confirmed that I had an appointment with Professor Armstrong, Radiology for the following week. We met with the secretary to outline details of VHI, pay fee for appointment and other incidentals like signing the consent form. The cold cap is an option so that you don’t lose all your hair but Professor Crown explained that before the treatment commenced there would be an education class which is an excellent idea so that all reservations can be discussed with people who understand. The Roches (Positive Appearance Centre Wig and Breast Care Specialists est 1942) booklet was there and what an excellent idea because it helps remove the awful fear of not knowing. http://www.roches.ie/category/wigs/
Off script now because I am looking at a piece of paper with notes but I seem to have them all muddled. It appears that when I attended Professor Crown I had a severe head cold and bronchial cough. I am not sure if it was that week or the week before that I arranged to have the flu jab. I was out of sorts and exhaustion meant I was sleeping extra hours and not following my stringent routine which in turn means I get a little confused. I may have the dates wrong but I included what Professor Armstrong said on the same sheet of paper although my appointment with him was 27th September 2017.
27th September 2017
Appointment with Professor Armstrong at St Vincent’s Private hospital. Again my partner KT was with me while Professor Armstrong outlined his plan for radiotherapy. I am to have 17 or 19 session, 4 which will directly target where the cancer cells were located in my left breast. He explained that there would be a 5% loss of lung and that my ribs on the left breast side will be “delicate”. He explained that I will come for a ‘mock up’ where dye will identify different areas in the body. When this is captured on camera or xrays, the radiologist and the team make the decisions. There is a Plan. I will be informed in due course as to what to do.
Pink Panther day: 11th October and inner panic, nerves, this is my third serious meeting, maybe even my education about treatment day and all I has was a confirm notice on KT’s mobile phone instructing me to be at SVUH Outpatients Suite 3. I have my fancy pink file but nowhere could I find a letter telling to be at the hospital. I kept asking KT about the appointment and he knew it was anxiety state time and did what had to be done and told me to stop worrying, everything was okay. Agitated as always, KT got me more focused saying if I wanted he would come with me to St Vincent’s but I said No. KT and Freddie our dog walked me down Clyde Road to the bus on Merrion Road and therein was a day of Random Acts of Kindness and Confusion. The bus driver was just pulling away from the bus stop and he saw me and opened the doors. I am still worrying about something not quite right on the text but thankfully I had KT copy it to my mobile phone (not smart but one for bewildered). I arrived at Professor Crown’s office and his secretary looked at the phone and said no you are in the wrong place, you need to be at the Public hospital. Now I am in panic. The car park is full and somehow I am on bicycle path not the pavement on the other side making my way to the Public hospital. I got there. I got to the Public hospital called Suite 3 also! It was time to register. The woman found my details but my address was incorrect. When she asked me my address I could not remember. It took me at least 4 times to get it right and in the end I sat down got a piece of paper and wrote it out (I am living at the same address for 15 years now). Panic not over. She tells me I am to meet with Professor Armstrong. I didn’t say anything but I was a little confused thinking, quite rightly, that I had met Professor Armstrong last week. Then this tall man called out my name and sheer panic I could not remember what Professor Armstrong looked like. Thankfully the doctor, who introduced himself by his name, had a most pleasing and caring manner. His office, the same as in the private hospital, was clinical. I had my pink file, my purple file, I must be in control of hoarding the details because KT is not there to watch out for me. The doctor took out my file. He asked me for my health history – more chaos for me I didn’t bring a hard copy with me this time. I said I had given it to Professor Armstrong last week; (I knew I had given hard copies to Professor Crown and to BreastCheck and Mr Gerraghty). That was it….I was not supposed to be there. Clarification was sorted out and I said goodbye to a very nice doctor in the public health arena. https://www.youtube.com/watch?v=v30HUOx6SYk
27th September 2017
Letter from Admission office stating that Professor Crown had placed me on a list for a course of treatment. It said that I would be shortly contacted by one of St. Vincent’s Private Hospital’s co-ordinator nurses ‘to arrange a date and time for pre-assessment and education’. There was also at standard letter giving the details of Health Insurance and the fact that it was necessary to find out ‘The name of the drug and route of administration’ – in relation to Oncology patients”.
This is the part that an anxious person hates about healthcare in Ireland. It creates such fear but this letter tackles head-on.
Depending on your specific treatment plan you may be admitted to the Day Care Oncology/Haematology Unit or or Oncology Inpatient Ward”.
In Bold Print
We would advise you to contact your insurer to confirm that your level of cover is adequate for this course of treatment. Your consultant’s secretary will be able to provide you with the required codes. Please refer to the Health Insurance section of the enclosed Patient Information booklet for further details.
The code is the key to the treatment and at least the patient, who is fearful by nature and often has extreme anxiety, can put aside the stress related to payment. The code is 12 digits and it determines the cover the patient has and the treatment plan is organised around this.
October month : Waiting; my “snapchat” and “groundhog day” resulting from traumatic brain injury serves me well. Everyday is about routine and more often that not I can be honest and say I don’t recall that it is me that is on the journey with cancer. So I am lucky.
Preparation: Vivienne Starr Optician has known me over a decade now and I cannot but acknowledge her patience and kindness to me over the years. I called to see her and Vivienne set up an appointment for an examination by the Opthalmologist. The upgrade in glasses is in order so that is one chore done.
There is a great advantage when you live in the Smart Urban Village of Upper Baggot Street, Dublin 4 and you need medical help. Boots, again over a decade, and a strong bond with Seana who understands my cocktail of medications. It was time to have the flu jab and as always I went to Boots for same. Now Oncology will be adding their list of medications and I am confident that this process, including my confusion, will help down this unknown path of medical care including Oncology and Radiology.
At this stage I must add the support I will have from Helga (Helga Schworer) who I have known for many years, mainly thanks to George, her Beagle who sits in pride of place in the salon. I often stop and play with George or meet him on his walks around the environs of Dublin 4.
Clothes and routine can be a problem for me. Skirts are summer wear and jeans are winter wear. Slowly, so I don’t forget, I must put together a kind of school uniform routine for the hospital visits. Minimalism is the only I know so this task will cause issues for me.
1st November 2017
Last week I received a phone call from Mary Donohoe – nurse co-ordinator for the education programme for the next stage of Oncology ie Chemotherapy. Reading the newspapers daily I was surprised to catch this little piece in the Daily Mail – it gave the answer to a question I had not yet asked of myself or others.
What is Chemotherapy? It was under the heading ‘Accidental Medicine’ – Daily Mail newspaper, dated 31st October 2017 (my birthday). It read.
Chemotherapy’s roots lie in German mustard gas attacks on Allied troops in the First World War.
The first such attack, in Ypres in 1917, left up to 10,000 people dead. In the 1930’s, with the second World War looming, Allied scientists raced to create antidotes.(Substance that counteracts poisons).
Two doctors at Yale University, Louis Goodman and Alfred Gilman, studied mustard gas victims’ records, noticing very many had a very low white blood cell count. When these mutate, they cause leukaemia and lymphoma. (My grandmother Marcella Comyn, nee Marcella Blake-Forster died of leukaemia; her sister Molly of throat cancer; her brother Donald of cancer too); cancer occurred in next generation also). The scientists realised that if mustard gas could destroy normal white blood cells, they might destroy cancerous ones.
Their first patient, JD was dying from lymphoma. In 1942 he was given an injection of nitrogen mustard, used to make mustard gas. His condition improved (albeit briefly). This paved the way for other drugs that destroy patients’ cells to save their lives – the principle of chemotherapy.
KT was to the fore again. We walked to Ballsbridge, Dublin 4 to get take the bus to St. Vincent’s Private Hospital and got a taxi instead and made our way to the third floor, oncology section, to meet with Mary Donohoe. Efficiency pervades. Coffee (a variety, tea, biscuits) welcome you into what most people would consider a challenge. Yes we met other people, some in the varying degrees of illness that cancer imposes. It is so very sad.
The education aspect and the care took about one hour and half. There was lot to explain but what a comfort to hear from Mary that the reason they suggest two people come together for the appointment is that the most any brain could contain is 10% so with two people it is likely that we may leave with 20% knowledge of how the process of chemotherapy works; the side effects; the treatments; the drugs; the interaction with drugs you may already be on, are given in detail (taking account of the subjective and how each patient experiences different symptoms). Mary is in no doubt the the treatment path from Oncology to Radiology is the best treatment in my case, repeating what Professor Gerraghty, Professor Crown, Professor Armstrong have already explained and not forgetting the people at BreastCheck especially Michelle.
The cancer was removed with surgery and the CT scans are clear. Chemotherapy in my case is described as “The Sledgehammer to Kill the Fly”. However I am Herceptin 2 (“low grade”) and the aggressive level of chemotherapy applies. Hair falls out between 14 and 17 days into treatment. However there is the option of the cold cap. This means on the day of treatment you need to be present 40 minutes so that the cap can be put on. I have great fear regarding this. Cold to me revokes horror memories of deep depressions for long periods in my life. The thought of the cold associated this cap sends shivers down my back and I don’t think I will be opting for this. I would prefer no hair and a simple hat. Mary then discussed the issue of the impact of Herceptin can affect the heart so that every three months the heart will be checked and in week 9 they will take an echo of the heart.
At this stage Mary looked at the list of medications I take for Bipolar (or as I prefer to call it manic depression) and Anxiety. I clarified if I could continue to get my Cytamin ie vitamin B12, and take Dulcolax tablets for constipation. The answer was yes. However in relation to Lithium it was decided that it was best to keep this separate – in that I mean for me to continue as I do at present, attending my GP Dr Peter Cahill, Psychiatrist, John Cooney with the oversight of Boots and blood tests every two months. Mary stressed the importance of being watchful to any changes and immediately contacting Oncology which basically has back-up 24 hours 7 days a week. The immune system is compromised. It is easy for a simple cold and to become a pneumonia and they do not advise the option of A&E. They need contact with you before an infection can take over. The immune system will respond in peaks and troughs from the chemotherapy. This means that patients are asked to buy a thermometer and check there temperature frequently. The normal range is (36-37) but if the temperature goes up to 38 you must immediately make contact with the TEAM. The phone is essential. (As a person with a phobia about the phone or asking for help, this will be such a challenge for me, it goes against the core of my character which was molded by years of the impact of social anxiety disorder) https://www.youtube.com/watch?v=u50L9CMRgno. I explained I was deaf in my right ear as a result of the traumatic brain injury and Mary explained that sometimes the medications prescribed can affect hearing.
Bloods will be taken every time. The mouth is vulnerable to infection; mouth washes are prescribed to protect the mouth. If Thrush happens, immediately contact the TEAM and a script will be sent with a medication prescribed.
The normal routine number of treatments is 6, but Professor Crown has suggested four in my case. There will be steroids also. It is essential to limit a manic high.
The message is really about keeping things simple. There are charities, there are support systems but really group interaction is not recommended or to complicate matters with herbal remedies. There are over 100 types of chemotherapy and each treatment is highly individual.
To conclude: Mary explained that we had to go to floor 1 for both bloods and an ECG ie electrocardiograph. Digital has made such changes to medicine. I watched attentively the monitor and my mind tripped way back to the 1970’s. My dad, a dispensary doctor, always interested in exploring and learning more meant we always had magazines like Time. the Irish and British Medical Times and the British Medical journal in the house. On one occasion while he was in Kerry he had noted in the Irish Medical Times, the sale of an electrocardiograph – this was in the day when they were really only found in hospitals. The machine was in the surgery until my mum retired a few years ago but alas never used. The size of the machines are similar but what is different is the technology and the ability of the technician.
What you feel is that there is a TEAM working with you. What is so different from mental health treatment is that you are kept informed in writing as to what exactly the procedure is. We left Mary’s office and we had the following to keep us informed of what exactly the meeting was about.
Hard copy material given to us by Mary: This really is about educating the patient. I read an excellent book recently by Eric Topel ‘The Patient will see you now…..’. Medicine is undergoing mass disruption. The smartphone is as the Gutenberg press invention changed all in the year 1500 https://www.thoughtco.com › … › History & Culture › Inventions › Famous Inventors
Friday 10th November is first day of Chemotherapy in Oncology; 3rd floor.
Dexamethasone premedication instructions
The night before and each night before Chemotherapy, it is necessary to take the following tablets. At this point Mary has given me a detailed A4 prescription to take to Boots pharmacy, Upper Baggot Street, Dublin 4.
Thursday 9th November (and in the future, every night before Chemotherapy)
- You have been prescribed tablets to take the night before and the morning of your chemotherapy
- These tablets are necessary to reduce the incidence and the severity of fluid retention and infusion related reactions.
Please take 8 mg (4×2 mg) at 10 pm the night before your Chemotherapy
And
at 6.30 am (4×2 mg) at 6.30 am in the morning
- Dexamethasone are steroids, they could cause an increase in blood sugars, difficulty sleeping or heartburn
- Please take you tablets after food/snack
Also provided is “Information for patients in written format about Chemotherapy which Mary read to us and wrote in the necessary data. (I have this on my file.)
Important and need to know.
- Chemotherapy/Drug Regime: Taxotere + Cyclophoshamide + Herceptin
- No of Treatments: ( 4 x TC (17 x H)
- Frequency: 3 weekly
- Starting date: Friday 10th November at 9.00 am (if choosing the cold cap need to be there 40 minutes earlier) at Day Care Oncology. It outlines all complications, numbers for two hospital departments which means there is 24 hour cover; and a detailed list of side effects.
A further two brochures were provided.
Neutorpenia (Warning signs and information): How to take Neulasta.
Company Amgen via HPRA Pharmacovigilance, Earlsfort Terrace, Dublin 2
www.hpra.ie/homepage/medicines/safety-information/…/about-pharmacovigilance
Any side effects you must contact the hospital and this is put into effect.
Finally: the hard decision for me to make – the cold cap (because of the fear of cold and depression). A guide to scalp cooling by Paxman titled ‘A Degree of Control’.
https://paxmanscalpcooling.com/scalp-cooling
Finally, Mary gave us a copy of the Irish Cancer Society booklet:-
Understanding Chemotherapy: Caring for people with cancer
http://www.cancer.ie/sites/default/files/…/understanding_chemotherapy_2015.pdf
The operation found the cancer cells in the breast, no symptoms, apart from fatigue which in my case can indicate a return to Chronic Fatigue or to a severe depression. Thankfully BreastCheck, Merrion, Dublin 4 (2 year recall) works so efficiently and they found cancer. The next stage starts with medication on Thursday 9th November 2017; followed by a visit to Floor 3, Oncology, St Vincent’s Private Hospital on Friday.
Written up from notes and information supplied by the Hospital and Irish Cancer Society by Michelle Clarke – Sunday 5th November 2017
Where am I now? that great big black box that’s in my head that needs engagement and stimulation to re-engage with the present. I am looking for notes, a diary, a book, a plain sheet of paper to try and record what Groundhog day has wasted to somewhere beyond my comprehension. It is here I take comfort from the writer and mathematician Lewis Carroll – who said ‘it is a poor kind of memory that only works backwards”. Well here I am at long last I can really endorse this because who wants to recall the details of cancer. For me to date is of no relevance because I am just here now muddling through an explanation and a slowly trying to re-adapt my 1-5 routine plan in the morning to another ie that provided in the information literature from Oncology.
Thank you Google: How do I start now:- Why not as I do each day and take a word, Google search the quotations and quote; Today the word is Oncology.
“It felt-nearly twenty-five hundred years after Hippocrates had naively coined the overarching terms karkinos – that modern oncology was hardly any more sophisticated in its taxonomy of cancer (taxonomy means the classification of animals or plants into groups).
by Siddhartha Mukherjee born 1970 (Oncologist quotes)
Count-down week to Chemotherapy: I managed to prepare; I collected the medications and necessary creams and shampoo. I took out my pink file and thankfully Kadija, the pharmacist at Boots, who knows me, had explained by writing the details out again on a plain sheet of paper. That night of Thursday 9th November 2017 I took the medications as prescribed; then took my “Cocktail” of psychiatric medications including a sleeping tablet and anxiety. The following morning, it was time for the second course of Oncology medications and my “Cocktail” at 6.30 am. KT as always creates the environment in which I can operate – the routine is strict; the discipline is essential. Our neighbour and friend Sally was the driver, but thankfully the great advantage of living in Smart Urban apartment living makes it so much easier for me. The diary tells me that not alone did I get the medications from Boot’s Pharmacy but I had gone to Royal City of Dublin hospital, Upper Baggot Street, Dublin 4, where Anne gave me my three monthly Cytamin injection. Thankfully I note Anne’s advice not to engage in comparisons with other people that in fact all cancers differ.
10th November 2017
Sally left KT and me at St Vincent’s Private Hospital. KT had walked Freddie (our for very special dog) twice and we left him at home resting. 3rd Floor Oncology by lift and thankfully there was coffee to calm our nerves! Tension because of the nature of the treatment is prevalent. Maria was in charge of me and acted as liaison. Two chairs look out to the sky of Dublin and where “Ground Control” the clinical hub that serviced the whole unit and calls in and out for other patients and families is situated. 9.00 am to 5.30 pm I sat in the chair with different drugs administered through a drip to my right hand, the opposite side to the breast where the cancer had been removed by surgery.
Bewley’s, a name from the past, is written in my diary. A cup with soup, a sandwich and a yogurt; a most detailed menu and that was the food part. Coffee was available also at all times.
11.45 am Professor Crown checked in with me. He had been informed that I did not want the cold cap; he explained therefore the loss of hair. He again reiterated that it was a low grade cancer. I note that I mentioned Twitter and its importance to me and he replied not politics but oncology; another page tells me my shock when I learned that my weight is now 8.1 kg ie 12.7 stone (in clothes and shoes). My weight used to hover around 9.5 stone to 10 stone apart from a time when I anorectic. Random notes in scribbled writing:
Weight; height; complete form presented, then check details; bloods taken; 11.30 option for Communion; explanations about how important it is to take your temperature, to be gentle regarding your skin, to be gentle combing your hair; to be realistic about getting a wig and sooner rather than later; to respond to any symptoms by phoning the hospital immediately (numbers given); 2.40 pm Taxitor with a warning to be alert to side effects. Bewleys served what I had ordered for lunch. Each patient had their own TV screen and an alert bell but nobody seemed to be interested in television, not even me. How did I fill in my day? Well I had opted for a book. Do not compare cancers is not so very easy when you make small talk with other patients. This is a tough station in life; all you can do is learn and give your full trust and commitment to the team who have chosen to work with you in the journey through breast cancer.
I listened to Thomas Friedman being interviewed by Charlie Rose http://charlierose.com/videos/29497 I bought the book. I note from all my pencil markings and comments that throughout the 9 to 5.30 sitting in a chair having chemo day (I got to page 67) that I fully engaged with this book because it is about Change – Disruption – Hope, that the truth is that we are living through a period in time as significant as happened when the Gutenberg press was founded in the 15th century but it is happening now. I highly recommend engaging with this man first by you-tube ‘The World is Flat’ http://www.youtube.com/watch?v=44EB4bvnOTA and to be followed by ‘Thank you for being Late’. It is about being human, clever, caring, compassionate and engaged in the world. Just imagine I am sitting in a chair receiving chemotherapy and my mind is totally captivated in momentous change. I can sum it up by saying robots and artificial intelligence are already here, medicine, law, accountancy, are about to face a disruption they could never envisage.
Back to practicalities of medicine today:
No adverse reactions. Professor Crown decided to reduce the steroids and the pharmacist provided a sheet of paper with all details. There is a risk with steroids of a mood elevation so again this is medicine where acumen determines outcomes.
Sally and KT collected me on that Friday 10th November 2017. There was lots of fruit and juices to ease my way into the evening, watching TV. I don’t think I went to the computer (which I do every day). I have had no adverse reactions thankfully. I am trying to re-organise my 1-5 routine but this I am drafting on my email and most likely when complete I will transfer it. This will take me back to the computer which to me is the provision of a kind of artificial intelligence that lets me connect with life at another level.
17th November 2017 is one week anniversary of treatment. Ironically Zimbabwe is undergoing a military coup; something, in my opinion having lived there for almost 5 years in the 1990’s, should have happened decades ago. 17th November 1995 I returned to Ireland a totally broken person; a marriage of 15 years gave way to the onslaught of traumatic brain injury following a horse riding accident and a fractured skull. Now it is cancer. You can imagine the insecurity of asking KT to stay around. Groundhog day is an advantage yet again because I am ill and I am just moving from task to task at the speed of a snail in reverse. TBI and music from my teenager years thanks to youtube allows me engage with true feelings hidden deep in me. This song is one of my favorites, long forgotten. http://www.youtube.com/user/creektrouble Bobby Goldsboro Honey.
I have changed the routine in line with the prescription from Oncology. I am trying to clock in memory as I do every day by using Twitter (this is my way of augmenting memory) so that I have some idea as to what is happening in the day; it is not working so well because on top of normal cognitive impairment this new word is ‘Chemo Brain’ clicks in. My daily emails with articles to read has taken a major hit. In fact I have no energy to read them so I will stick with Twitter and responding to people I know. I will enclose later my Routine Aspirations:-
Chronic Fatigue and any link to cancer especially breast cancer – I have written extensively on this over the years as I struggled to become engaged with a world that was driven out by what I could call as “Drop Dead Exhaustion”. The details are all in my health history “Nietzche, he who has the reason why….. https://canisgallicus.com/…/nietzche-he-who-has-the-why-to-live-can-bear-almost-any…
Today I want to ask the Oncologists, the Cancer specialists – is there a link between Breast cancer or any cancer and chronic fatigue because today, 6 days on since the first session of chemotherapy, I have been here before for a number of years and it was diagnosed by eminent physicians as Chronic Fatigue? Again I ask this because my maternal grandmother, mentioned before, had a brain injury, suffered from fatigue and died from Leukaemia in the 1963? It is what I called “Drop Dead Exhaustion”; it just takes over. I hate the return of this. It was my final year in Trinity College Dublin year 2003 just prior to my final Business Economics and Social Studies exams when the body went into retreat and sleep took over until I became so debilitated. This lasted for many years as you will see from my medical file. https://canisgallicus.com/2017/02/19/trinity-college-dublin-1997-to-2003-but-no-degree-by-michelle-clarke-2/
To conclude because now I am so tired. Thankfully my mother maintained VHI cover for me over the decades and I now am receiving treatment from one of the best centres of excellence in cancer in Ireland. Despondent and living in the day I want to thank people like Maria the Oncology nurse, my Mum Rose who has given me a whole selection of hats, Sally who keeps reminding me that each day is a day closer to hair loss, so let’s explore the wig.
Hair Loss: 23rd November 2017 was the anniversary when I first met KT in 2003. The good news I still had my hair for the day.
The linear mind can miss its gift is a quote you will constantly meet when I am writing because a core trait of perfection caused many problems and diversions in my life but which were exposed on my recovery from traumatic brain injury. Frontal lobe damage is about the executive part of the brain and it was basically got shattered making it impossible to focus, process, recall, encode without huge physical effort and tortoise levels of pace and engagement.
What happened? So much. The immune system ‘Crashed’. Room 714 St Vincent’s Private Hospital became the destination on Sunday 20th November 2017 and thankfully KT and Sally were there to get me focused to pack a bag and left me to the hospital. (Again I can reiterate enough how fortunate I am because my mother has paid for my VHI private health care cover) so I was immediately admitted to the hospital, went to my room and all needs were catered for. There was no request for money or credit cards. The efficiency of Oncology and no doubt Professor Crown’s team and the code they give, ensure that the least of a patient’s worries are financial.
The crater of my memory leaves me back to relying on my lilac diary to see just what happened in the intervening days. Random writing is everywhere, notation of TV programmes predominate but sufficient is here to show the outcome of not being diligent enough when going through chemotherapy to take the advice of the Oncology team to respond to any infection and contact the hospital. I encountered problems. We phoned the hospital but it was 4.5 hours before we spoke to the nurse. I thought I may have had the symptoms of thrush/kidney infection. It was too late in the day to go to the GP. I went to Boots Pharmacy and they suggested cranberry juice and to have a urine sample test with the doctor the following day. The day following it was too late, the immune system was giving in to infection.
It was Sunday 20th November 2017 and we arrived at St Vincent’s Private Hospital just as Mass in the ground floor community area was ending. The receptionist checked us in and we immediately went to the 7th floor (Cara Ward) and was assigned to room 714. My diary tells me the nurse recorded my weight, my height, there were blood tests, heart was monitored By 2.40 it was looking as if the Taxotere concentrate for solution for infusion http://www.medicines.ie/medicine/…/TAXOTERE+20+mg+1+ml+concentrate+for+solution… may have had some side effects. By this time I was parched with thirst and my mouth was salty and burning. I had developed a rash on my neck, some spots on my face, it was painful to pass urine, there was pain too. I was very tired but had difficulty sleeping despite taking my night medications which include sleeping and anxiety tablets. Many questions were answered about the medications I take and I was able to give the Boots blister pack which outlines medications both morning and evening times. I added to this the cytamin injection which I have every three months. This has the major advantage of helping me cognitively engage.
I was also uncertain and disorientated. I knew I could not use soap and needed to use cream to shower. Miriam was the nurse who was really kind and guided me into my new routine; she suggested I could use the chair in the shower (balance can be a problem at times). The night nurse explained to me that what had happened was that the white cells had dropped. By Tuesday, the hair was still on my head, and it was time to wash it. KT arrived with a selection of reading material. Conscious of losing my daily routine I appear to have written down preferences for youtube and included my favorites: Charlie Rose, Frontline, TEDMED, TedTalks, Youtube 1960’s-90’s music. I also compliment myself for using two bags with bright colours, one with a funny face, to contain firstly my creams and secondly my medications including the thermometer which I am supposed to use several times each day (warning is if your temperature goes beyond 38, then it is phone the team and hospital). I was placed on antibiotic drip with flush to follow. A capula was placed in my right hand to receive the various drip feeds.
Visit from Professor Crown: He apologised that this had happened and explained that my blood count had plummeted and that they did not normally encounter this. With the next session of chemotherapy on December 5th 2017, they will make provision to counteract this. There was nurse and a young junior doctor with him. He said he would see me the following day. Another junior doctor with the assistance of Miriam the nurse inserted another capula for a special drip. Another nurse arrived with a very cheery attitude. This needle with the special medication was the tummy. The funny point was that my mobile text sent in a message in text “Visualise your Healthy Cells! I like this idea. It empowers the patient to engage and visualise.
What a night? Sleeping tablets and anxiety pills didn’t work so I went to sleep about to 12 am only to wake shortly after and remain awake, reading my favorite FT magazine (published with FT every weekend) and watching TV for the remainder of the night. People will tell you drugs don’t work; it’s untrue. Keep informed and if necessary always keep notes. Healthcare is accelerating so fast; it will be client centred. My Grandfather, a Judge, a Senator, a Litgant against the State (Sean Lemass) in 1950, a man who opened phosphate mines employing over 300 local people in the 1930’s and Gold mines with Ben Briscoe in Avoca Wicklow had wise words of wisdom ‘”Knowledge is no load”.
https://canisgallicus.com/2016/06/13/michael-comyn-1871-to-1952-eviction-to-kings-counsel-senator-judge-prospector-et-al-my-grandfather-who-i-never-met-by-michelle-clarke/
By Day Three: Professor Crown had requested more bloods: Outcome:
All Tests okay; White Cells Rising: Home early Wednesday 22nd November 2017/
KT helped create the routine that I read the newspapers everyday; he evidently brought newspapers to the hospital for me to read. I have written in notebook about the HSE and Kindness classes for 2 hours. Anyone I mentioned this to just laughed so I do what I usually (this is why I have such in Artificial Intelligence) I used Google and look at what I found:- The Irish Examiner. Kindness and its importance – beyond… to kindness and the link to increased productivity. http://www.irishexaminer.com/…/hse-staff-urged-to-attend-2-hour-kindness-workshops-81510…
Stormy day: It was like checking out of a hotel. Oral antibiotics replaced the drip. The pharmacist provided the prescription including some pain killers, the capula was removed by the day nurse, I packed, Reception phoned a taxi, the room was already allocated to another patient and I was home by 12 pm to the most wonderful welcome from both KT and our special dog Freddie. It was time to click into my daily routine and check out emails, Twitter and meet some friends. KT meantime had taken my prescription and gone to Boots Upper Baggot Street, Dublin 4. Seana was there and I safely say we have known her for a decade now. Forever competent and diligent she quickly identified that the drugs prescribed by St Vincent’s Private Hospital would have a dangerous interaction with my existing prescribed drugs; she phoned them; changes were made and Dr Cahill was informed.
23rd November 2003 I met KT so this was an anniversary and the good news is I am out of hospital, no complications with additional medications, able to do a few chores around our home, and the hair is still in place!! A few people visited during the day and Sally kindly walked Freddie while I stayed indoors. Faith is not one of my strong points but I do believe in coincidences and Fate. President Mugabe, Zimbabwe after three decades in power, is a constant feature in the media over the last few days. For some reason I decided to Google President Mary Robinson’s State visit to Zimbabwe in 1994. Google provided the link to Kutama http://www.biography.com/people/robert-mugabe-9417391 – the rural Jesuit school that President Mugabe attended as a young boy (Fr O’Hea from Ireland taught him). As a member of the Mashonaland Irish Association based in Harare, Zimbabwe http://www.dfa.ie/irish-embassy/south-africa/our-role/irish…/irish-associations/ I was involved from the Zimbabwe side in President Robinson’s visit to Zimbabwe and worked with Donal Denham, a member of the Department of Foreign Affairs in Ireland. The Fate part is simple. A young student of this school named Dinoj Surendran had attended the same Jesuit school and the entries showed that his expertise was mathematics, he attended University in Harare, then the US and worked in Microsoft in the field of astrology. Because I lived and saw the rural locations in Zimbabwe I knew the merit of this particular man so I decided to write to him. There was no response and then I realised why. He had been killed in a car accident in the US – what a sad loss to Zimbabwe especially now as a new era unfolds. I would recommend to anyone interested in Zimbabwe to read this man’s contributions via the computer because he is not dead while his works are on Google. I include the line “An Introduction to the situation in Zimbabwe in 2003 by Dinoj Surendran RIP (too young but never to be forgotten). If you Google his name you will find many links about this incredible academic from Kutama, a rural village, where President Mugabe was educated. http://people.cs.uchicago.edu/~dinoj/zimsummary.html
Fate again brought me back to my cousin JJ who on two occasions (once at the age of five and the other at age of 18 invited me to live in his home with his family). Somehow Google prompted The Navan Historical Society and his name James Comyn appeared, it was his Obituary in the English Times and he was listed as one of Co. Meath’s well known people http://www.navanhistory.ie/index.php?page=james-comyn
The days are closing in. The hair. I gently washed it this morning with Johnson’s baby hair shampoo as instructed and patted the head to dry it off; you can’t use a hair dryer when you are going through chemotherapy. When it dried and I brushed it I knew the day had come, the strands of hair were falling out. Again I headed for the desktop computer and moved to Google. The nurses on the day of chemotherapy when I decided not to opt for the Cold Cap (fear of cold and depression) kept advising me to get a wig and one nurse mentioned Donnybrook. Sally had made several suggestions that we really needed to think about wigs. Well today was the day. Smart Urban Living came to my rescue again – they were busy but they could fit me in at 3 pm. I walked and found my way to Hair Club by Hairspray. What a surprise? Lots of hairstyles on models. Karen was very patient and brought me lots of different wigs to try on. Sally arrived and she know me so well decided that a closer to grey wig might be more suitable. We all agreed and now I have the wig. Apparently if you have health cover you can make a claim for the wig so I was given a form to submit, in my case, to the VHI. If you have a medical card they too may pay a proportion of the amount. The negotiation is left up to the person getting the wig. http://www.hairspray.ie/Hair-Club.html
and to add how each day can give you a random act of kindness: it was Black Friday so the wig was reduced in price by 20%.
29th November 2017
My hair is falling out in strands. As I type bits keep falling on the keyboard and I have to say I am so surprised that it appears to be so grey. I still have not taken the wig out of the box, hoping that I am one of those lucky people who does not lose their hair but by today – I know it is not going to be me. Within the next day or two the wig will be shown to KT, Rose and others who know me.
I read recently about Ariana Huffington, a synopsis about her life and the fact that she ends each day with Gratitude List. http://www.huffingtonpost.com/lauren-jessen/gratitude-journal_b_7745854.html
What a way to end the day; just forget about the bad things that may have happened and say thanks for the good. Today I met my Mum at the Westin for morning coffee. She makes a huge effort to see me each week traveling from Skryne in Co. Meath to Dublin. I was worried about the weather and that she was driving to the bus stop but by the time she received the message she was already in Phibsboro on the bus. So yes I am so grateful to have had time to chat especially about old times and memories. I then succeeded in getting a few groceries in Dunnes Stores for KT and myself and then after a sleep met my friends Esther and Aidan for the usual chat about what is going on in the ever changing world. I also brought Freddie for his walk down Clyde Road – as always he tried to trick me and make me go towards Herbert Park but you see the Park is closed and he does not understand; so that the battle is on until with we pass Clyde Lane. Yes, I hope I remember that each night I say thank you for the positive in the day it is a lot better than complaining and being miserable. Add to this the power of laughter and KT always sometime in the day ensures there is plenty of laughter.
Personal view about charities
Too many, not regulated, HSE delegates funds too often to charities which results in bureaucracy becoming more entrenched. I have recently found out that there is a Charity!!! but its objective is to ensure that where funds are donated that they are used effectively. Give Well http://www.givewell.org/
However, this charity I will support because I trust in Professor Crown abilities
The Cancer Clinical Research Trust is a registered charity which supports a … and to contribute to the world-wide war on cancer. John-Crown. Prof. John Crown …
I have recommended Dr Eric Topel’s book ‘The Patient will see you now….’. Based on this I want to include two contributions I have recently read about, based on media, which should indicate my belief that the patient should be regarded as an equal participant to the treatment process. The patient by being involved in their treatment can identify sources that indicates their participation.
Irish Daily Mail – 4th November 1917
Gene breakthrough to spare thousands of breast cancer patients from Chemo by Sophie Borland http://www.pressreader.com/ireland/irish-daily-mail/20171104/281676845178429
“Researchers from University College London, who are behind the trial, say the test could allow up to 5,200 patients avoid chemotherapy each year. Chemotherapy is the mainstay of cancer treatment and it is given to approximately 16,000 breast cancer patients in England every year. But, it causes crippling side effects including exhaustion, infections, sickness and hair loss, which are usually far worse than the symptoms of cancer itself.
Many patients say they never fully recover and it can lead to heart damage, leukaemia – a type of blood cancer – and in some cases death.
The trial which was launched in January, is funded by Britain’s National Health Service the NHS and is overseen by scientists at UCL, Cambridge University and Warwick University’s Clinical Trials Unit. It involves 4500 patients. It is called Optima. ….. Check link for further information.
1983 I was introduced to the Pink Paper yes, the Financial Times, and part of my job was to read it as well as the Irish papers. Throughout my working career,my work involved reading the Financial Times. KT when he first met me noticed my interest in the FT and as part of my rehabilitation he would buy the daily papers and the Saturday FT with the magazine; added to this are all the other magazines he bought for me, especially focused on science so that I could keep up to date on traumatic brain injury, depression, anxiety. The message is clear – the purpose is HOPE. We have myriad of magazines mostly highlighted so that I know I have read but immediately forgotten. I am hoping that somehow, somewhere in the brain, something becomes associated and gets logged and then triggered at a future date. This article is of particular depth and interest. http://www.ft.com/content/9c4fab50-b38f-11e7-a398-73d59db9e399
TITLE:
CAN GENE THERAPY REVOLUTIONISE MEDICINE DAVID CROW REPORTS
FT MAGAZINE 21/22nd of October 2017 (22nd October is my Father’s anniversary)
Snippets
- Leber congenital amaurosis (LCA), a rare inherited retinal disease that causes severe impairment in both eyes
- October 2017: US Food and Drug Administration voted unanimously in favour of approving gene therapy …. which is being developed by Spark Therapeutics, a biotech group in Philadelphia. “If, as expected, the agency follows their recommendation in January, the treatment will become the first of its kind to be given the green light in the US”.
- Sparks product is named Luxturna. It is designed to help a subset of LCA sufferers with a mutation in gene known as RPE65 – who number about 6,000 in Northern America, Europe and other developed markets….
- ‘It’s approval, would have much broader implications for the way we fight sickness and disease’.
- Gene therapy differs: ‘replacing the faulty or missing DNA that is causing the disease in the first place and helping the body to fix itself…tackling the illness at its biological root….It opens the possibility of that thing still elusive in modern medicine: a cure.
- Dr Michel Sadelain, Memorial Sloan Kettering Cancer Centre in New York. “Gene therapy gives our cells the genetic capability they need to repair the illness themselves”. He goes on to say “Most current medicines are chemicals that you deliver through a pill or some other route of administration. They are active for a few hours or sometimes a few days.
- Treatments developed by Spark ‘are the culmination of decades of work in two branches of science a) The Human Genome Project, which concluded in 2003, unlocking the sequence of three billion letters that make up our genetic code, giving scientists a long list of targets for gene therapies and b) ‘researchers found a way of shuttling the cloned genes directly into cells without making a human body go haywire’.
- Field in its infancy but look out for the following biotech groups:- Spark; GenSight, BioMarin; Bluebird Bio. The big companies such as Novartis, Sanofi, Bristol-Myers Squib and Pfizer have invested billions of dollars in gene therapy in recent years. These form the US$1 million per patient (which has to be dealt with by healthcare systems).
- Interesting point about the eye and the immune system: The eye is a closed system so danger is greatly reduced.
This article is worth reading.
