I still am wearing my hat but gradually a curly head of hair is appearing. What is strange is that my hair previously was straight and quite grey but not this time. I will have to wait a little longer to see if this will change.
I had thought of this chapter as the conclusion but somehow I am not quite finished.
Within this month of August I will attend St. Vincent’s Private Hospital, Daycare Oncology, Level 3, for my 2 pm appointment on 14th August 2018, for my infusion of Herceptin. This happens to coincide with an appointment for a mammogram at the St. Vincent’s University Hospital Breast Care Service, suite 4, 1st floor. The appointment time was early at 8.45 am. Thankfully, on the day, I was one of the first patients there, as many people gathered in the waiting area for their appointments. As instructed I presented the letter to the receptionist. The mammogram machine awaited me with a young radiologist who was thorough, pleasant and kind. All was complete by 9.30 am so I phoned Oncology to see if they could give me an earlier appointment so they suggested I arrive at 12 noon. I always carry a bag and in it is a selection of reading material, it can be the Financial Times Saturday magazine or it may be a book I am reading or for that matter it can be clippings from the recent newspapers. The main purpose being that it is essential that I am not bored, memory deficits means there is not much that I can think about without outside stimulation. I went to the coffee shop and had a coffee and read until it was time to go to Oncology.
I arrived at 12 noon at Oncology and joined other people in the waiting area until I was called for a weight, temperature and blood pressure check. A nurse was assigned to me. This was her second day back in Oncology after having had her 2nd child. There is something refreshing when you are in what can only be described as a dismal setting to see the young nurses and to hear them talk about their children, their holidays and when there is a lull in the events of the day, to hear them chat and laugh while they are writing up their notes on patients for the day. Today Professor Armstrong came to Oncology and you could see that there was genuine respect and that all worked as a team. When you are on Herceptin there is a possible side effect to the heart so every so many weeks it is necessary to have a heart echo cardiograph. I had forgotten where to go but the receptionist directed me to Cardiology; again there was no queue, the appointment system worked like clockwork and when finished I returned to Oncology. The nurse had taken my bloods and the results were back, the echo results indicated an improvement and satisfactory. I asked the nurse to give me my Vitamin B12 (cytamin) injection which she did. I met with Professor Crown who is pleased with my progress to date and it was time for the infusion of Herceptin. KT has been asking me when the treatment ends. Asking questions I find difficult; I tend to be more solitary and seek answers through Google or reading. Today I asked how many more treatments of Herceptin. The nurse told me that I was on my 14th treatment and that it is probable that there will be three more, depending on Professor Crown’s decision. KT was delighted that there was an end date; he has been a stalwart beyond my wildest expectations during this very traumatic time, especially for him as my confidant, advocate, carer and partner. KT’s constancy has been so re-affirming and assuring.
I am awaiting the results of the mammogram and there is a hidden tension as we both re-affirm each other that all will be well, that the “Sledgehammer to catch a fly” approach of Professor Crown’s Oncology team, means that there is no more cancer in the breast. I have neglected my teeth over the last year but while washing my teeth, a filling (gold) so it must be in decades, fell out so I knew it was time for me to visit my special dentist Dr Dan at Smiles, Waterloo Road, D4. Having arranged an appointment for 28th August 2018, I attended. Thankfully KT had reminded me to take the filling because it was decided to either remove the tooth or try re-inserting the filling, which Dr Dan did.
Wednesday 29th August 2018: It was time for Phlebotomy department at St. Vincent’s University Hospital for my lithium and other bloods. Fortunately, when I phoned the day before and explained that I had an appointment at St Vincent’s on August 29th for Oncology, they had a vacancy for my bloods especially lithium. Bloods complete I had time to put in. I rambled around the main area of the hospital; the Irish Cancer Society have a Daffodil centre where there are brochures and trained staff to talk to people about cancer; it is an excellent service. I have mentioned before about appointments and people not attending hospital appointments. At long last HSE http://www.hse.ie/eng/ bureaucracy are engaging in trying to make patients take some responsibility and there are signs on the walls about how important it is to attend appointments. Private patients tend not to miss their appointments and there is no reason why a patient who has been given a medical card by the HSE should be negligent. An appointment costs the State money and awareness by both public and private patients makes the health system work in a systemic way and ensures costs are kept to a minimum. The notice main points are as follows:-
St. Vincent’s University Hospital – 2016
- Help reduce our hospital waiting time.
- Here at St. Vincent’s University Hospital a total of 18,234 patients did not attend “DNA’s” their appointments. “DNA’s are ‘did not attend’
- Telephone numbers are provided for operations switch; bone and joint department; and diabetes centre
- The costs to the HSE: Euros 1,458,700 (which works out at Euros 80 per patient).
Awareness tells us that attitudes need to change. We need to understand that if we do not attend an appointment, there is another person who is in need of that appointment. People must be held responsible that if they have chosen to ignore an appointment, they are depriving another of access to medical treatment. To prevent another person on a waiting list having the earliest appointment possible is morally wrong especially when we know an earlier appointment could mean the prevention of a fatal diagnosis/prognosis and a treatment programme. It is about changing the attitudes of people and valuing the time allocated by the HSE staff.
It was time for coffee but the coffee machine was broken so I decided to put in the time by going over to Merrion Shopping centre for a coffee and to read a magazine until it was time for my next appointment at the Breast Care Service, Suite 4, 1st floor. Again I had forgotten where to go to and ended up back in the mammogram department. A little life learning was awaiting me. I was standing behind a man about 40 years old. He was the next in the queue and looked unusual given that this was the mammogram department. Then voices were raised. The two women behind the counter tried to calm him down but he became more irate, shouting at them and using foul language. There seemed to be no sense to it but then for him and for the staff it was their reality. One woman phoned security and a middle aged man arrived and he placated the man – he knew his name. Another security man arrived and they left with the man. The two HSE women handled it so well and with great tolerance and patience. After the event, they were stunned but thankfully this is not an everyday experience. It is important to note that men can also have breast cancer. http://www.cancer.ie/cancer-information/breast-cancer/male-breast-cancer
For me, they read my letter and I was in the wrong department. I inquired again and was directed to another suite so I arrived and the receptionist ushered me and other patients to seats because we were ahead of time. Then we were asked to form a queue; there was about 20 people there at the 2.30 pm appointment time. Then we were called up and details were input into the computer. The date of birth appears to be the core data that identifies each of the patients providing the back up details of your address, your general practitioner, your phone number; whether you hold a medical card or have private health insurance. All you have to do is present the letter and the data is there to be on the HSE computer system to be confirmed by you. I was called by the doctor (foreign) almost immediately; he brought me to the examination room and told me that mammogram showed no signs of cancer. He then did an examination of my breasts (using his hands). He called in a person to be present as he did the examination. I explained that the breast operated on was tender but he assured me that did not mean that there was cancer present. As soon as the examination was over I phoned KT who by the time I arrived home had made contact with all to tell them the positive news. There is something so powerful in childlike expressions of joy by grown up people when something as serious as cancer is a threat to their lives, both their present and their future.
Apartment living can be a very interesting way to live. The shared doorway into the block means you meet your neighbours and over time you have chats and exchange experiences. A lot of the apartments in our block are rented out and often to foreigners. Meeting people from other countries often gives you different perspectives; the Turkish family with two small children who had little English still could express kindness with a hug and the same can be said of the young Indian family with one child. Everybody has come forward and have been so kind and understanding. It is impossible to thank those who have been there with such support and compassion; all I can do is go to the quotation that sums up what is so true in life:
No kind action ever stops with itself. One kind action leads to another. Good example is followed. A single act of kindness throws out roots in all directions, and throws out roots in all directions, and the roots spring up and make new trees. The greatest work that kindness does to others is that it makes them kind themselves. Amelia Earhart.
My journey with breast cancer is nearly over. Perhaps I am premature in thought to say that the breast cancer no longer exists when I know what you become once you have had cancer, is a cancer survivor. It will be necessary to be watchful and engage with check- ups for all the years going forward from now. Each time I visit daycare Oncology and I listen to the stories of other people, I realize that for most it is a question of time. Some people have been cancer free for 15 years and the cancer appears again and they are back in treatment but also we do know that there are far more survivors than years ago. I so well remember the patients in my parents’ dispensary practice (Belper, Tara, Co. Meath) who would present with unknown symptoms that would result in a referral to a consultant and who if it was a cancer diagnosis, would be operated on with, a response “Open and Close”. It was so ruthless then, it was the dreaded word called Cancer and imminent death. I was a child then and I can remember so well going out on the house calls with mum or dad and knowing that injections would be given to ease the pain and suffering of patients diagnosed with cancer. Sometimes the husband or wife would have engaged in that paternalistic culture in medicine of that era and they would ask the doctor not to tell their spouse that it was cancer; and this happened and I remember often wondering did the person really know that they were dying? I knew cancer could apply at any age; it might be a child you would hear about or it could be teenagers. I remember two teenagers on separate occasions who had to have injections morning and night every day and the reason I recall this is that my mother, no matter who she was visiting, would leave early to ensure the young person had the injection (they were given twice a day at 9.00 am and 9 pm), no doubt the injection was a pain killer. Because these young people were close to my age at that time, I would always ask about them in the hope there would be a reprieve and that they would recover. In those days, it just didn’t happen. I remember one teenager who said ‘no more treatment’.
As I sit here writing this I my mind is wandering back to the 1970’s and 1980’s and to all the people I once knew, most of them very young, some with young children, who were diagnosed with cancer but who often would say enough treatment and their choice would be a passing as peaceful as possible with sufficient morphine to ease their passing. By the 1980’s thankfully there was greater medical intervention so people could remain in their homes. The Irish Hospice Foundation http://hospicefoundation.ie/ and the availability of proper palliative care gave people a dignity in their imminent death. My mum, based on her experience as a GP, encouraged people to remain at home with their families and I often recall going out on late night calls and mum would always refer to the community spirit that made people engage and share with each other to help the person and their family as they moved on from this world. The Irish Hospice Foundation made so many advancements in this personalised treatment for patients approaching death and at the end of life. At my mum’s funeral; people who came to offer their condolences reminded me of their loss of loved one’s especially those who died from cancer.
While in hospital in Zimbabwe, I recall with horror the screams of the patient dying from cancer in the room next to me; it is this that tells me healthcare equality is essential. For my mum, she must have found it very hard to know her only daughter had cancer; she was so upbeat but then performance was always her star quality. Ironically, KT shares this quality with Rose so I really do not know what deep down in his heart he feels about this last year; like my mum, I probably will never know but what I do know is that each and every day, morning and night, anger and peace, crisis and calm, clarity and chaos, KT has been there at my side telling me I will survive this interlude with breast cancer. Jackie, Teresa and Julena, KT’s brother-in-law, sister and daughter have been a constant; as have Charles, Jane, Aine, Ide, Val and Ned with many prayers and masses said and a constant source of reassurance and sound advice. David, KT’s nephew, called to see us recently and I know I can always phone him; David is special because he talks in facts; you know if you ask him a direct question, he will answer it. I am looking forward to going to Mayo to meet the people who have been so supportive in the near future.
Communication is essential. They talk so much about ‘fake news’ these days but embellishment of the truth goes to the very core of being human; some of us talk facts while others embellish. The key however is about discernment. Social media has created another tier in communication and especially for people who have ill-health. My choice is Twitter for my virtual community engagement. Twitter friends may be people I will never meet; they may live in different continents but there is a level at which we can communicate and that level might be the connection of cancer, brain injury, mental health, or just politics and social activism, but the core fact is the acknowledgement that these people have come forth in the media to try and improve the lives of others. Presently I interact with Laura Brennan, Jessica Greham, Vicky Phelan (I have written about Vicky in an earlier chapter), all exceptional in their efforts to support others.
Laura Brennan has been on the TV, on radio, social media including Twitter advocating how important it is for young people to avail of the HPV vaccine http://www.hse.ie/eng/health/immunisation/pubinfo/schoolprog/hpv/about/. It is too easy when you are young to ignore warnings about cancer; life is fast, youth is intoxicating but in the case of Laura, she is young but she unfortunately has a terminal case of cervical cancer. Laura’s message is clear and it is essential to be aware that science confirms in America that cervical cancer is almost fully eradicated. In the words of the scientist who developed the HPV vaccine, Professor Ian Frazer, the public health programme in Australia is so successful that it is expected that within 10 years, no women there will have cervical cancer. There is much controversy about giving people vaccines but there is good reason to heed the findings of Professor Ian Frazer, by considering the following:
The HPV virus causes cervical cancer as well as other cancers in men and women and it can be eradicated by public health programmes similar to the one against polio.
…A study conducted in Australia in 2007 found that no woman who had taken part in the country’s screening programme over the period examined died from cervical cancer. The 80 women who died from the cancer during the period studied had come from outside the country or had not gone for screening as recommended.
Laura Brennan is the voice of experience and a harsh reality because Laura speaks as a young woman with a terminal disease called cervical cancer and people need to listen to what she is saying. Parents need to ensure their children get vaccinated against HPV infection under the national immunisation programme. This programme is only open to first year girl students in secondary school as well as to young men who have sex with men and young men and women who are HIV positive. It is urgent that the Department of Health sanction this provision of HPV to young boys also. MSD http://msd-ireland.com/products/60/our-products is the company that manufactures Gardasil, the HPV vaccine used in Ireland. It is most distressing to note that when the immunisation was introduced in 2010 there was a near 90% up-take but following a campaign by people against the vaccine (often called anti-vaxxers, it fell to 50% up-take. Laura Brennan from Co Clare who works in the cosmetics industry has appealed to parents to have their daughters avail of the HPV vaccine at school. Laura did not have this opportunity of having the vaccination because the programme did not exist when she was at school. Add to this the necessity for HIQA http://www.hiqa.ie/ to approve the vaccination for young boys and it can be sanctioned by Simon Harris, Minister for Health. Thankfully the HSE have given some recognition to Laura for her bravery, courage and compassion for others and the fact that there is a corresponding increase in the uptake.
We are challenged now to review the screening programme which is in place for a number of years now. Some, like me, can say I am a breast cancer survivor, others can say they are living on borrowed time but what we must make ourselves aware of is that presently the CervicalCheck http://www.hse.ie/eng/cervicalcheck/ debacle is shouting out all kinds of dissenting views. Negligence cases, hungry solicitors/barristers and their no foal (Win) no fee http://www.claims.ie/no_win_no_fee advertisements are there ready to take on cases of women who have been failed by the National Screening Service, the HSE and their doctors. We know that two cases have resulted in payments in excess of £7.5 million; we also know that there are a further 221 cases pending. These cases relate to cervical cancer but we do not know what has happened in relation to breast check audits. If the compensation pay-outs become exorbitant, then the National Screening Service as we know it (and we must accept that lives have been saved or extended by screening with many living on what they refer to as borrowed time) may be cancelled. Already there is an avalanche of legal actions against CervicalCheck and BreastCheck http://www.breastcheck.ie/, Again it is necessary to state that this could result in the State being unable to undertake national cancer screening programmes and this means early stage breast cancer, as located by breast screening in my case, (there were no prior signs that would have alerted me to attend the doctor) will result in advanced levels of cancer that will more than likely have metastasized. Ireland is now one of the most litigious countries after the United States for medical negligence claims and this poses a real threat as the Courts make awards.
Advances in Breast Cancer
Professor Afshin Samali, NUI Galway http://www.nuigalway.ie › Research › People, is the lead in Irish research into triple negative breast cancer (TNBC). These findings are also published in Nature Communications Journal http://www.nature.com/ncomms/. Irish researchers are in the process of developing a drug with potential for clinical use, “which not only improves the effectiveness of the initial chemotherapy treatment but also reduces relapse among women with this form of cancer”. A new strategy, it is hoped could improve survival rates in breast cancer and in particular TNBC which accounts for 15% of all breast cancers diagnosed and is more commonly found in younger women. What is interesting about this is that other breast cancers respond to targeted therapies but there are no targeted therapies for TNBC which is treated with chemotherapy which initially proves to be successful, but over time the results are that patients with TNBC relapse within one to three years of the treatment and the long term prognosis, according to researchers, is poor. Professor Samali, the director of Apoptosis Research Centre http://www.apoptosis.ie/, said this study is the result of extensive laboratory experiments, analyses of breast patient samples, testing pre-clinical models of TNBC and collaboration with our international and industry partners”. He went on to state that “the new era of precision oncology aims to tailor treatments to individual cancer patients and here at NUI Galway we are excited to identify a new therapeutic strategy for TNBC patients who are most in need of better treatment options“. Dr Susan Logue reported that this landmark study was funded by Science Foundation Ireland http://www.sfi.ie/ making note of the fact that at present there is no selective therapy for triple negative breast cancer.
Again I return to the importance of community and especially for people like me with phobias and an embedded fear of attending doctors or asking about all too many health conditions – I am sure some people regard me as a total neurotic. The crisis unfurling from the Vicky Phelan settlement of £7.5 million and the absolute courage of Vicky and her family to speak out about the facts of the case and the lifting of the non-disclosure clause, gave me that necessary courage to accept that screening is available and that there is a responsibility as a human being to ensure that your health is a priority. Living as I do in the Upper Baggot Street, Dublin 4, environs, the media reporting of the CervicalCheck scandal made me inquire at Well Woman Clinic, above Meaghers pharmacy. The outcome was the doctor was there, there were no other patients, I had the code number from the National Screening programme so it was time to be brave and thankfully I did because then I had removed another fear especially since I had not engaged with CervicalCheck in the past. BreastCheck for me proved to be an easier option so I have attended as requested for a number of years. I have to say the receipt of a letter from CervicalCheck within 8 weeks as they specified I will share because it is reassuring because it is in writing and you just can’t forget! The opening line thanks you for taking part in CervicalCheck.
Your cervical screening test taken on 24/05/18 detected no abnormalities. Your doctor has received the result of your test.
The enclosed leaflet has information about screening test results.
It is important to understand that no screening test is 100% effective. If, at any time, you have concerns or symptoms such as pelvic pain, irregular vaginal bleeding, spotting or discharge, you should contact your doctor without delay.
CervicalCheck will remind you about your next screening test in three years. In the meantime, if you change your name or address, please contact the programme.
Thorough and the facts are stated that no screening test is 100% effective. I am not sure if this is reported to St. Vincent’s hospital that is apart from me telling the nurse in Oncology so that it can be added to my file.
Good friends are a real treasure but sometimes life is like a sequence of train carriages, you move from one carriage to another and because all your energy is exacted on being or just hobbling forward, you lose contact with those friends of earlier eras, who remain deep in your heart but not in your life. Maybe as soon as I approach the last carriage, I will make contact again with special people. I always wanted to maintain contact but I always hoped that my health would have been stronger and the rigid routine of groundhog day could be displaced to engage in what is a normal relationship between friends. Not alone have I lost contact with friends but if my family members have not passed on, I have lost contact with family too. I have read recently that as people who are dying when asked what they would change about their lives and many say that it was losing contact with friends throughout their life. Good friends are Esther and Aidan who have been a constant while I have trundled along in this carriage of my life. They know I write but when they realised I had been writing about my journey with cancer; they have been constant in their encouragement, making suggestions and advising me.
One of the suggestions is about Quackery and cancer. As person who has walked deep into the forest with black dog and suicidal ideation; it is very hard for me to grasp that a person is clinging on to life, never wanting to die. There may be neurological reasons for this because of the brain injury but basically everything revolves around 1 to 5 and life is like stepping off that carriage at destination unknown and alone. Aidan suggested “Quackery” and this is so very important. People pray; others go to healers, more have masses said, or even travel to Lourdes, Fatima, or closer to home to Knock. Then there are the people who look to the lotions and potions, to the health gimmicks that are sold for costly sums. There are too many alternative medicine sources to mention. The Times recently reported on the online gene test and the fact that it ‘could mislead about cancer risk’. The company is 23andme http://www.23andme.com/, which is a service to allow people explore their ancestry through genes. However, they have now offered a service to detect genetic variants linked to an increased risk of breast, ovarian and prostate cancers. There are 5 million customers worldwide. Their biggest markets are USA, Canada and the UK. The important factor to be aware of and alert to is that it tests for only three variants in the BRCA1 and BRCA2 genes, most commonly found in the Ashkenazi Jewish population http://en.wikipedia.org/wiki/Medical_genetics_of_Jews – it does not include thousands known to cause cancer risks.
There are fears that people may be “falsely reassured” by a negative result, having failed to understand the implications of testing for only three variants.
Paul Thiruchelvam, of Imperial College London http://www.researchgate.net/profile/Paul_Thiruchelvam2, said: “Armed with these test results, this individual may not be as vigilant at looking for breast cancer symptoms as they should be. They may have one of the many other faulty cancer genes the online kit doesn’t test for and they simply would not know.
“BRCA testing is used as a major selling point by 23andme…
…In the small print before customers buy the test, they are told: “The three variants included in this report are most common in people of Ashkenazi Jewish descent and do not represent the major of BRCA1/BRACA2 variants in the general population.
Mr Thiruchelvam, who is a consultant breast surgeon, the decisions about what to do with a positive result could be “complex and stressful”, adding: “These types of test results require interpretation and benefit from counselling.
The Times, Saturday August 4th 2018
VHI offer Genetic Testing but it would involve an independent Oncologist.
Three more infusions of Herceptin and this experience of cancer and the intensity of treatment leads towards an end in sight. It is now time for me to look beyond and make certain decisions and engage with a charity/charities that will derive benefit from my experience and hopefully a percentage of the profits from this book I have written since first diagnosed with cancer, following a free BreastCheck screening August 2017.
What is familiar to me is Professor John Crown, Oncology, 3rd Floor, St Vincent’s Private Hospital so for this reason I will look the charity that is closely affiliated and for this reason I have chosen Clinical Cancer Research Trial.