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.
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:
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Can have great difficulty forming complete sentences.
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May get out some basic words to get their message across, but leave out words like “is” or “the.”
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Often say something that doesn’t resemble a sentence.
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Can have trouble understanding sentences.
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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:
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Remember, when someone has aphasia:
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It is important to make the distinction between language and intelligence.
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Many people mistakenly think they are not as smart as they used to be.
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Their problem is that they cannot use language to communicate what they know.
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They can think, they just can’t say what they think.
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They can remember familiar faces.
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They can get from place to place.
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They still have political opinions, for example.
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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:
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Educate yourself about aphasia so you can learn a new way to communicate.
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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.
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Experiment with strategies that facilitate social interaction during your rehabilitation.
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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:
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Ask yes/no questions.
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Paraphrase periodically during conversation.
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Modify the length and complexity of conversations.
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Use gestures to emphasize important points.
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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.
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As you become more confident, slowly add more conversational partners but continue to limit distractions such as background noise (music, other talking, TV).
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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.
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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.”
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Practice a few statements about current events: “Did you see the basketball game?” or “Boy, we are having beautiful weather!”
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The more you practice this script, the greater your chances for success.
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Family members can prepare written cues, or organize pictures to promote interactions.
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Once you achieve a level of comfort with close family and friends, you can start getting involved in the community by:
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Going to familiar large group activities such as church events or weekly social gatherings.
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Volunteering, returning to work or joining a new interest group.
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Remembering there’s no rush. You should step into this stage at a comfortable pace.
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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.
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