It is so hard to believe but I have just had two weeks without any need to go to St Vincent’s Private Hospital. Easter is now over and it is time to start thinking along the lines of being a breast cancer survivor. It was time for a renewal of my three monthly supply of medications and to get a blood check for Lithium levels. My GP Dr Peter Cahill has worked alongside Boots pharmacy in Upper Baggot Street, Dublin 4, as a diligent team to remove much of the stress associated with being diagnosed with cancer; while being medicated for bipolar and anxiety also.
I was given a book on loan because it was special to the person lending it to me. Having read it I don’t think I would recommend it to others with a diagnosis of breast cancer because it is a bitter stark reality of a Mum, Ruth Picardie, Journalist, back in the 1990’s who was diagnosed with breast cancer and who died within one year. As I have no doubt said many times before the fact that memory deficits erode all details on a daily basis; it is difficult for me to record any side effects or identify with what I really feel about having breast cancer so this alters my experience with that of other people with the same diagnosis. The book title is “Before I Say Goodbye” by Ruth Picardie (10 pence was donated to the Lavender Trust http://www.breastcancercare.org.uk › Donate › Other ways to give for every copy sold) and the title goes on to state ‘The bottom line is, I’m dying’. At first I was shocked that anyone would give such a book to a person diagnosed with breast cancer but as I gently read each page I realised that it acted as a prompt to me to be diligent in noting side effects and being aware of the possibilities of secondary cancer as detailed in this link https://www.cancer.gov/publications/dictionaries/cancer-terms/def/secondary-tumor and also the importance of notifying the medical team about any abnormal changes, no matter how insignificant. Also, it made me realise that no two cases are the same. Ruth Picardie, unlike me, was leaving behind twin children aged 2 years and her young husband. Ruth was only 33 years old and since Ruth passed away in 1998, there have been massive improvements in cancer diagnosis and treatment over the last two decades. http://medhum.med.nyu.edu/view/11933
The idea of including the exchange of emails with friends and readers of Ruth’s articles in the Observer magazine highlighted how necessary it is for me to keep a diary and details of symptoms which I must report to the medical team. I have fatigue and I need to sleep for an hour in the evening but again I have no doubt said this before, the fatigue in no way resembles what I experienced for many years with Chronic Fatigue. I notice my vision is blurred and occasionally I get a sharp pain in my left eye, but it is only momentary. By evening time my lower back aches but it is not so severe that I need to take pain medication. Then of course there is my right thumb. It is swollen but I have been assured this is nothing to do with cancer. I have to say that when I feel a little arthritic all I can say is not Arthritis too. Sickness is a lonely journey; KT is so protective over me I don’t want to cause him any more worry than he has at present. For now, I will leave the book and return to day to day life.
I look at the comb beside my bed and then I remember my hair which is non existent. I just cannot wear the wig; I am happy with my night hat and my day hat. After routine of treatment, having me time means I could have coffee at our local Insomnia and meet up with special friends. April 5th with nobody to meet and a little time to explore I decided to go to the Irish Cancer Society (Charity/Third Sector) in Northumberland Road, Dublin 4, http://www.cancer.ie/ and see if I could gather up some more leaflets. I browsed and a very engaged receptionist asked if I needed anything else. I suspect she identified that I had cancer because of my blue hat and no hair falling beyond its tight parameters. I stuttered a bit; but when she asked if I would like to meet a nurse if available, I said yes and later was really pleased to have met with Nurse Susan. It is so important to know that there are people who are there to give advice especially when people are ill. My experience is negligible support is truly given by the charities related to Depression or for that matter Traumatic Brain Injury. I exclude both Aware (St Patrick’s Foundation hospital http://www.aware.ie/, the monthly lectures and Headway http://headway.ie/ but their support is limited especially as the years roll on and you adapt to your state of mind and reduced abilities.
Nurse Susan met me in the reception area and brought me to a very comfortable room where we could chat. Immediately she conveyed that I was in a secure environment and she was there to assist me. I realised that I had been mulling around side effects but doing nothing about them. I had forgotten that I was told by Oncology ‘no matter how insignificant a change to call Oncology’. Susan appropriately did not give me the answers to my questions about my perceived symptoms but she asked when I was due to go to the hospital and said write out a list and give it to the team. She then asked about my diet and stressed the importance of eating fruit vegetables and importance of a breakfast including some toast, cereal or scrambled eggs. She said that I could buy frozen fish and vegetables because they retained their nutrients and said to avoid chips and cakes and that it was important to avoid processed foods. This may seem so obvious but sometimes you just need an outsider to remind you.
Being interested in research for decades now, I asked Susan about Research and the Irish Cancer Society. She told me there was a comprehensive area dedicated to research and affiliated to leading hospitals. Then she explained that I might be interested in the “Psycho-Social” aspect of being a cancer patient. There are two locations in Dublin and it is available to people with cancer and there are talks for cancer patients families and carers, one location is South Circular Road, which is nearest to me and the other is in Eccles Street on the Northside of Dublin. The drop-in centres of ARC Cancer Support Centres http://arccancersupport.ie/drop-in-centres Every month you can download their monthly calendar enabling you to plan your day around sessions that there are available. These include Relaxation and Visualisation; Yoga; Pilates; Knitting Group, Open Men’s Cancer Peer Support Group; Women’s Peer Support Group; Secondary Cancer Peer Support Group. Also subject to booking you have access to special Citizens Information; Boots Positive Appearance and Carers Stress Management (4 wk programme). Services by appointment including counselling (short-term), acupuncture, reflexology, Roches wig fitting and breast care services are also provided. Also by appointment at South Circular Road only you can have manual lymph damage and bio-therapy, metamorphosis, IHM. There is so much more offered and so practical too. There is even a workshop on Wills and Probate in April for people affected by cancer (presented by Caroline McCall from the High Court Probate Office) on 26th April. So much available but thankfully my partner, my canine best friend Freddie, writing, social media especially Twitter means I have learned through past experiences to be alone but not lonely. I left the Irish Cancer Society in confidence and aware that I am lucky in that the support system surrounds me. I thanked Susan and I knew that I would write the list. The blurred vision worries me.
Now it is time to return to Ruth Picardie “Before I say Goodbye”. It is not Ruth’s narrative that has captured my attention, because every cancer patient travels their own journey but it is that of her husband, Matt Seaton, also a Journalist. My experience through manic depression, traumatic brain injury, and now breast cancer, it is those closest to you who have to cope with a crisis in your health that impacts on their lives.
to quote sentences that cause reaction within me
“…but in retrospect the lump not only grew within her, but between us, spreading, as inexorably as the cancer itself did.
…You always imagine death as a sudden event, a clear break between being and non being, possession and loss, and for some, facing perhaps the dreadful trauma of losing a loved one killed suddenly in an accident, that is how it must be.
But with a progressive disease like cancer, dying is a relentless attritional process of estrangement. You so much to do and say the right thing, but you are doomed to frustration, failure and regret. The only really ‘right thing’ would be to make the person you love well again, and that is the one great godlike task you cannot perform”
The cancer had interpolated itself, sending out its rogue cells to multiply madly and lay waste like an army of termites. Cancer changed everything; it put us on different tracks, stretching our grasp of one another to the limit and eventually forcing us apart. In the end, I could not reach her, and it felt like a failure in me. And then she was gone.”
Michelle mulls on this and hopes from the bottom of her heart that if cancer spreads that KT will not suffer in this way because since the day of I met him, waitng for the 46A bus on Morehampton Road, Dublin 4, to go to Church in St Patrick’s Cathedral, while in much despair and ill-health, KT has stood by me through thick and thin and as you will see from the attached link, the journey was one of building self esteem, teaching me how to cope with traumatic brain injury, bipolar, anxiety, chronic fatigue https://canisgallicus.com/2015/03/12/nietzche-he-who-has-the-reason-why-can-deal-with-any-how/ It was November 2003 that KT appeared and he became my advocate to navigate inclusion in a new community without what destiny seemed to be telling me and that was plans made by others to curtail my life to one of routine and constraint. KT encouraged me to meet people; to talk to them; to write; to engage; to have rows with him especially knowing he would still stand by me and as our dear friend Joe Murray, Barrister, once said to me ‘he makes you laugh’. Life was a like conundrum, nothing really made sense but somehow in the trail of his confidence, I followed and felt a security that I never had before. There was a high price, in old fashioned terms, my family “disowned me” ie except on their terms ie brief meetings in hotels or coffee shops and solo.
I know if even the worst happens and secondaries occur, unlike another life, a life of over 14 years marriage, which when challenged with the outcome of traumatic brain injury, that person imposed a life of further hardship to the trauma of the injuries sustained. He had affairs and ultimately he married the woman who was pregnant with his child and he divorced me. Therein lies the pain in my life that has created the wisdom and peace that I now have with KT and the security he has created for me. My divorce cam through in 2000 and I was so relieved to be through the desolation that lasted over four years. But revenge did not stop with the decision of the Judge in the Family Courts (Divorce). No there had to be a justification for the woman bearing his child to have recognition as his wife but at the cost of declaring our marriage of over 14 years as non existent, most likely based on the crude analysis called ‘Insanity’. The Catholic Church said our marriage was void. I have detailed the experience, especially when you are most vulnerable and a woman, when your case is called before those ‘Men in Frocks’ as KT calls them in the Archbishop Palace https://canisgallicus.com/2015/09/09/pope-francis-bureaucracy-and-costly-system-currently-in-place-for-church-annulments-a-path-to-justice-for-one-condemned-by-men-in-black-in-hidden-canonical-courts/ KT met me in the middle of this hideous affront and he negotiated with the Archbishop and others but the Annulment proceeded; I had no case; most probably as later confirmed that the woman expecting my partner’s child, wanted a Church Wedding, as did her mother.
I have left this behind; but it has given me strength of character to take each day as it comes and I know KT will have no regrets if anything should result in my passing. He has fought for me every step of the way and as I say he has given me that sense of security, I never had.
20th April 2018: Happy Birthday Bud; I am so sad you are no longer meeting me at the Westin. I must admit avoidance prevents me from going into town because I always associate it with meeting you and knowing that you have passed away, to hopefully a better place and that you are again among the people who were important to you. Me – I have so little true faith but somehow today suggests fate or faith, created a question. KT went shopping and returned with a beautiful bunch of deep red roses; the memories flowed in of your rose garden and of course Johnnie who always wore a rose in his lapel. This could have no significance but then it is too much of a coincidence. Too add to this it is a beautiful day Rose, the cherry blossom trees are pink and white; and life goes on but the loss is still felt.
Back to the cancer journey, April 10th 2018, I met with Professor Crown and as advised by Susan (Irish Cancer Society) I had a note of the side effects. The main concern for me was the blurred vision, the occasional dart of sharp pain in my left eye and my fear of aphasia. Professor Crown carried out the pen test and decided it was time for an MRI. As yet, I have not received the results so I presume all is okay; and that these are side effects of Herceptin intravenous every three weeks. I am still struggling with my vision, the dart of pain still exists as does ache in my lower back. Fatigue also applies but fear could be a large component. My two main fears in life depression (that requires hospitalisation) or dementia. A simple problem with spelling creates panic and sometimes when I am typing for KT recently I am finding it hard to work out whether it is the blurred vision, aphasia or recall of spellings. As bipolar I am allowed to have a little neurosis; so enough of this topic and time to move on. Today the nurses encountered problems locating suitable veins so when they were told about the MRI it was decided that the cannula drip once put in place for the Herceptin would be used again for the MRI. I had several hours to wait for the MRI so luckily as always I had a selection of reading material so I had a coffee, read and then went to Radiology. Thankfully the woman in the chair next to me, who had cancer for 18 years with 10 years remission, warned me about the noise element of the MRI http://www.webmd.com/a-to-z-guides/what-is-an-mri What a relief she told me and it was exactly as she had said:- Think of the noise on a busy construction site and yes it was 30 minutes of this noise – assorted. No doubt I have had MRI’s in the past but I had forgotten about what is involved. You basically strip to your panties only your head emerges into a machine and a shield like the one hurling players wear is placed over your head. You are told to keep your eyes closed and you are given a bell just in case claustrophobia takes hold. Half an hour later I was free to return home. Again I am so lucky in that I live near the hospital, just a taxi journey and the receptionist phones for a taxi while you sit in the lobby (like a hotel) and wait. KT and our dog Freddie were waiting for me; yes I know KT was anxious but this will be the case for a couple of years going forward; that is what cancer is about. There is no cure as yet but you are called for tests and if the news is good, you are told you are cancer clear for a year.
The oncology team under the direction of Professor Crown suggested that I attend the Oncology Clinical Psychologist, Dr. Isabella. Tuesday 17th April I attended Dr Isabella at St Vincent’s Private hospital. It was very helpful but we jointly decided that I have developed over the two decades of being ill a coping strategy and it was unlikely that counseling would be of any benefit to me. Dr Isabella reassured me that if I felt at a later stage I needed to see her, this would be possible. We discussed suicide; Dr Isabella explained that any sessions we would have would be confidential but that in the case of suicide ideation, she would be bound to notify the Oncology team. My belief is that when you are going through cancer it is very important to have the support of a Psychologist as part of your team but in my case due to brain injury and amnesia, I just don’t recall the past or what has happened (hence the reason for journal) and have extremely limited means of creating a plan going forward because I live in ‘Groundhog Day’. However, I still retain what they call emotional intelligence and I am aware enough to know what I fear and that (as I have said before) is depression and dementia but there are profound reasons for this as you can see from my health history.
We live in an apartment complex and I have to say my neighbours have been consistent in their good wishes. I received so many plants and flowers but was surprised to receive another beautiful arrangement tonight (the day of my Mum’s birthday). The family know about cancer from personal experience and they thought I looked a little tired and hence the kind gift.
Mary McAleese, former President of Ireland, speaks out about male dominance in Catholic Church; let us not forget the voices of those who spoke out but who nobody listened to. Sr Maura O’Donohue, a doctor, a Medical Missionary of Mary, nun was one of these people. Mary McAleese would do justice to the work of so many nuns who have for decades worked silent on the missions subjected to abuse also.
The Catholic Church in Rome made the extraordinary admission yesterday that it is aware priests from at least 23 countries have been sexually abusing nuns.
The Catholic Church in Rome made the extraordinary admission yesterday that it is aware priests from at least 23 countries have been sexually abusing nuns.
Most of the abuse has occurred in Africa, where priests vowed to celibacy, who previously sought out prostitutes, have preyed on nuns to avoid contracting the Aids virus.
Confidential Vatican reports obtained by the National Catholic Reporter, a weekly magazine in the US, have revealed that members of the Catholic clergy have been exploiting their financial and spiritual authority to gain sexual favours from nuns, particularly those from the Third World who are more likely to be culturally conditioned to be subservient to men.
The reports, some of which are recent and some of which have…
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.
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.
May be disrupted in their ability to use language in ordinary circumstances.
May have difficulty communicating in daily activities.
May have difficulty communicating at home, in social situations, or at work.
May feel isolated.
“Scientists and clinicians who study how language is stored in the brain have learned that different aspects of language are located in different parts of the left hemisphere. For example, areas in the back portions allow us to understand words. When a stroke affects this posterior or back part of the left hemisphere, people can have great difficulty understanding what they hear or read.”
I have excluded details about comprehension because this does not apply to me thankfully. I can listen, I can take notes, I can read silently albeit slow with focus problems. However, expressive this explains so much for me.
Broca’s Aphasia (expressive)
When a stroke injures the frontal regions of the left hemisphere, different kinds of language problems can occur. This part of the brain is important for putting words together to form complete sentences. Injury to the left frontal area can lead to what is called Broca’s aphasia.
Survivors with Broca’s aphasia:
Can have great difficulty forming complete sentences.
May get out some basic words to get their message across, but leave out words like “is” or “the.”
Often say something that doesn’t resemble a sentence.
Can have trouble understanding sentences.
Can make mistakes in following directions like “left, right, under, and after.”
“Car…bump…boom!” This is not a complete sentence, but it certainly expresses an important idea. Sometimes these individuals will say a word that is close to what they intend, but not the exact word; for example they may say “car” when they mean “truck.”
A speech pathologist friend mentioned to a patient that she was having a bad day. She said, “I was bitten by a dog.” The stroke survivor asked, “Why did you do that?” In this conversation, the patient understood the basic words spoken, but failed to realize that the words of the sentence and the order of the words were critical to interpreting the correct meaning of the sentence, that the dog bit the woman and not vice versa.
Remember, when someone has aphasia:
It is important to make the distinction between language and intelligence.
Many people mistakenly think they are not as smart as they used to be.
Their problem is that they cannot use language to communicate what they know.
They can think, they just can’t say what they think.
They can remember familiar faces.
They can get from place to place.
They still have political opinions, for example.
They may still be able to play chess, for instance.
The challenge for all caregivers and health professionals is to provide people with aphasia a means to express what they know. Through intensive work in rehabilitation, gains can be made to avoid the frustration and isolation that aphasia can create.
Excerpted from the article “Talking Tough?”, Stroke Connection May/June 2004 (Last science update March 2013)
For most, a stroke has a startling and life-altering effect on both the survivor and family members. All involved find themselves trying to come to terms with changes ranging from physical and sensory loss to loss of speech and language.
For many survivors, this loss or change in speech (dysarthria, apraxia) and language (aphasia) profoundly alters their social life. Ironically, research has shown that socializing is one of the best ways to maximize stroke recovery. Many experts contend that socializing should begin right away in the recovery process.
For many people living with aphasia, dysarthria or apraxia, the question then becomes: How can they socialize if they can’t communicate the way they used to?
Here are some tips you can use to begin your recovery:
Educate yourself about aphasia so you can learn a new way to communicate.
Close family members need to be involved so they can understand their loved one’s communication needs and begin to learn ways to facilitate speech and language.
Experiment with strategies that facilitate social interaction during your rehabilitation.
Many stroke survivors with communication challenges compensate by writing or drawing to supplement verbal expression, or use gestures or a picture communication book, or even a computer communication system.
Family members can facilitate communication with some simple techniques:
Ask yes/no questions.
Paraphrase periodically during conversation.
Modify the length and complexity of conversations.
Use gestures to emphasize important points.
Establish a topic before beginning conversation.
Your environment also can help support successful socialization. Survivors have told us that it is easiest to begin practicing conversation in a one-on-one situation with someone they are comfortable with and who understands communication disorders.
Practice conversation in a quiet, distraction-free environment.
As you become more confident, slowly add more conversational partners but continue to limit distractions such as background noise (music, other talking, TV).
As you become more comfortable in one-to-one or small group interactions, explore less-controlled social situations with your speech-language pathologist, close friends and family, or other stroke survivors.
Before you attend these gatherings, practice common things discussed in a variety of situations. For example, “How are you?” “It’s been a long time since I’ve seen you.”
Practice a few statements about current events: “Did you see the basketball game?” or “Boy, we are having beautiful weather!”
The more you practice this script, the greater your chances for success.
Family members can prepare written cues, or organize pictures to promote interactions.
Once you achieve a level of comfort with close family and friends, you can start getting involved in the community by:
Going to familiar large group activities such as church events or weekly social gatherings.
Volunteering, returning to work or joining a new interest group.
Remembering there’s no rush. You should step into this stage at a comfortable pace.
Attending a stroke support group.
Speakeasy is a conversational practice group in Cleveland, Ohio that meets weekly for two hours. Its members have a chance to practice their communication skills and gain confidence in their ability to communicate.
Speakeasy’s tips for communicating with speech and language limitations in social settings:
Try, try, try to get your point across no matter what anybody says or thinks.
If waiters speak too fast when you go out to dinner, ask them to slow down.
Try one-on-one conversations.
When talking on the phone with a new person, repeat, “I’m a stroke survivor…can you understand me?”
Make a point to go out and interact with people — socializing is an important part of recovery.
No matter who tells you that you can’t, it’s always possible to keep recovering!
Remember that the speech and language changes stroke survivors experience can last a lifetime in some form or another. As life circumstances change, and your speech and language needs evolve, reevaluate what works and what has not worked in social situations. And continue to expand your horizons.
For more information on aphasia or to find an ASHA-certified speech-language pathologist in your area, call ASHA’s Action Center at 800-638-8255 or visit ASHA on the Web at www.asha.org.
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.
6th February 2018: Back to Oncology, 3rd Floor, St. Vincent’s Private Hospital, Dublin 4. This time the chemo is over but it is time for Herceptin treatment by drip. The coffee is free but when you look around the waiting area and see different people who are at different stages of treatment you get that chill up your spine of fear. It was time for me to go again for an ultrasound which is necessary every so many weeks especially when you are receiving Herceptin. I found my way to Cardiology on the first floor. I was thinking about my trip to the vet who had said our dog Freddie needed a ultrasound so this primed me to be very attentive to what it was all about. Niamh gave me a gown and told me how to position myself on the couch. Technology has advanced so far. It is so interesting watching the screen and seeing your heart and other measurements. Niamh from Monaghan had a great personality and diligently chatted while looking at the screen so that she and the machine provided the charts that would say my heart was in order and Herceptin could be administered. I have to say I learned something too. The qualification is called Clinical Measurement and it is a 4 year course in DIT (Kevin Street). http://www.dit.ie/catalogue/Programmes/Details/DT229
When morning came and I woke up the thought was there – what if I just didn’t bother going to Oncology; you know just simply like not turning up for an appointment. KT would not approve of this so I put that thought aside as being foolish and prepared for the day. You may think you are alone in the world but when you engage you never know the surprises that lie in store for you. On the bus I met someone I knew, her name is also Michelle. We had spoken often about the effects of traumatic brain injury and exchanged experiences, mine being personal, and her’s related to her son. When I told her that I had cancer, she just looked at me and said you have got over so much in the past, this is easy and you know this. Michelle gave me that reassurance that I must keep my spirits up because there are people who really care.
Too add to co-incidences, the other is really incredible. I am standing at the reception desk in Oncology and I am looking at this face that hasn’t changed since she and her Mum stayed with me in Harare, Zimbabwe, when she was just about 12 years old. As you know my Mum Eleanor Rose passed away at Christmas and this young woman named Elinor who Mum knew since she was a baby was talking to the receptionist and all of sudden I knew her face and I gently called her name Elinor and yes it was Elinor, now a young Mum of three small children. When we were called to meet with Professor Crown, my name was called first and Elinor was second. There was something spiritual in this meeting. Being 20+ years older than Elinor I left the hospital with a different resolve to my early morning horrors that answers must be found to breast cancer and all other cancers.
The Plan: Herceptin 2 intravenously every three weeks; Chemotherapy is over; it is no longer about arriving at 9 am in the morning but instead it is 2 pm. This time it is only every second visit that they need to check your bloods. Professor Crown unlike previously when he did his rounds to his patients, this time we met him in his office. The computer and the chart were there and he confirmed that my hormones were in order so there was no need for medications (I think this means that I am hormone negative) which means that when you are Herceptin positive as I am that this leads to the best results. This is the way I understood what Professor Crown was saying but as I did not have my notebook, I may not quite grasp it. I asked the nurses who said that when you are oestrogen negative, you need no hormones.
A little diversion time: What is the Research in Ireland? How does it link to US, to EU, to UK to China and elsewhere? Where do I start? Let me start with Twitter @canisgallicus. Since 2010, Twitter is part of my daily routine. Traumatic brain injury affected my memory and Twitter has become the prompt I need to engage with the day. What I have is my pre accident memory ie prior to age 32 and that which happens within the day. Add to this KT and his vast intelligence, humour and character and I have a daily routine that works for me and let’s me live a life of independence. So where did I go to on Twitter: for a start it must be Professor Crown and then I follow link by link until I find something that I can make a connection with. I arrived at this Tweet. https://twitter.com/nicb_dcu?lang=en;
Just some notes to encourage people to engage with the above link; the writing is technical but the three videos give essential insight into the progress made in relation to breast cancer.
Highlights of San Antonio, Texas Breast Cancer Symposium 2017 – “SABCS”
This post was written by three National Institute for Cellular Biotechnology “NICB” cancer researchers: Neil Conlon, Alex Eustace & Denis Collins, with equal contributions from each
Texas is known for big cars, big hats and big steaks but for five days each year one particular corner of the Lone Star state is known for big research. The CTRC-AACR San Antonio Breast Cancer Symposium is in its 40th year and remains one of the premier global meetings for clinicians and scientists focused on breast cancer research. Breaking clinical trial results and the latest scientific findings are presented to an international audience of around 7,500. After 40 years, the Symposium is a well-oiled machine, now with a helpful phone app to organise the talks you want to attend.
Insights you can investigate if you engage with the SABCS link provided:-
SABCS started in 1978 and this evolves into 40 years of progress against Breast Cancer.
Technology enables multi-disciplinary teams and people to be long distance mentors
Neil Conlon, a PhD student working for BreastPredict, was funded by the Irish Cancer Society, to present a Poster at the SABCS conference
8,000 participants coming from 90 countries
Increased role of patient advocates
We have now moved from focus on specific gene to Big Data
Professor Slamon: Revlon, EIF and Los Angeles raised the initial funds for his research (video a must for people diagnosed with HER2-positive.). 1971 was the year when America declared the War on Cancer. At that time there was considerable sums of money available but no technology; now we have the technology but we need funds raised through research.
Again I am enclosing the link because it is most informative and the video’s give the background that is essential to understand if you have a diagnosis for breast cancer. Personally I would advise people to use Twitter and engage with the links made available.
Radiation at St Vincent’s Private Hospital – week 1 and ending 8th March 2018
I received a phone call to say an appointment was made for me at 7.30 pm Monday 12th February 2017. I accepted even though I knew my stamina would make this virtually impossible. KT decided to collect my medications and when chatting to Seana and the staff in Boots Pharmacy, they sensibly (because they know me for over a decade now) that we should ask to change the appointment to an earlier and more suitable time, a time that fits in with my rigid but necessary routine. KT phoned and the appointment was changed to 11.30 am.
Monday 12th February 2018, the day of my first appointment, I left home at 10.30 am to get the bus to St Vincent’s hospital (a short journey of about 10 minutes by bus and 30 minutes walking). Thankfully Bus No 4 and No 7 are frequent. I arrived at the Radiotherapy building, I had already been given what resembles a credit card which has a bar code and with a reminder from the receptionist I checked in and went downstairs to await my first session of radiation, scheduled to last about 20 minutes. Book in hand as always, I got a cup of water from the dispenser and I sat in the waiting area until it was my turn. The staff were young and very kind. It is not so easy when you are in your fifties to be naked from the waist up. The machinery is complex; the members of the radiography team make the calculations and arrange your body in the best location and radiation starts. You feel nothing. You must lie still but at the same time be relaxed. I was given the dates and times for all forthcoming 19 appointments which are at different times each day so you really need to concentrate and make sure that you know the time of your appointment and arrive on time. The men who were waiting seemed to know each other and chatted but I just read my book until it was my time for radiation. The equipment I cannot really describe but the large screen with all the personal information which enable a number of people to be involved is impressive even when you see that photo of yourself that you hope is not you. Add to this the mirror which tells you – exercises and weight loss needed.
Side effects: After the first week; well I don’t really know. It is beneficial when undergoing this treatment to have the amnesia that often goes with traumatic brain injury so that there is no time to dwell or recall what actually happens. The only disadvantage was fatigue; where the body just gets so tired and you need to sleep so on several days I returned home and slept for a few hours.
Day 1 I had that little zest of energy; an elderly person I know was admitted to St Vincent’s University hospital several weeks before and I had not felt able to visit. I took the opportunity to cross over from the Private Hospital to the Public Hospital and then to Our Lady’s ward. I have to say that acknowledging that people awaiting hospital may spend a long time on trolleys the standard of provision of care in the public hospital is impressive. Nurses and nurses aides do incredible work and get very little acknowledgement. Add to this the social worker and their commitment to the care and-direction of the person back to their home or into a care home, it is most re-assuring.
I left the Herbert wing and went through to the main reception area of St Vincent’s University Hospital. Every few months I get my lithium levels checked there. I know that in the main area there is a dedicated space the Irish Cancer Society – Daffodil Centre which makes available free Cancer information, support and advice. It is impressive and it is free. As you can imagine there are many booklets and leaflets relating to all kinds of Cancer and advice. The Daffodil Centre is open Monday to Friday 8.30 am to 4.30 pm. This is backed up by a National Cancer Helpline 1 800 200 700 (www.cancer.ie).
It was not long before Mary noticed me and approached me in a reassuring way. I explained that I had my first session of radiation and really up to now I had not really grasped what radiation was about and that I had concerns that if my private health insurance ran out what would happen? How would I be transferred into the public health system? Thank fully Ireland is not America so it is possible if you are no longer eligible for private healthcare to move to the public health system. Mary then printed out 9 pages about Radiotherapy and breast cancer. http://www.cancer.ie/cancer-information/breast-cancer/treatments/radiotherapy
America – USA and Healthcare. Having worked for a number of years for an American Investment bank in London, I know that health cover was part of the package there so I have been to Harley Street, having first attended an excellent NHS doctor. I therefore the privilege of the referral to Harley Street. Recently I read in the FT (Financai Times) magazine about the American system controlled by Health Insurance resulting in many people being illegible for cover. I include the link and recommend the article because Ireland’s health system continues to be in crisis like the NHS and the model we are looking to is America and not that of the EU which favours a more social based model. Ideally, health provision should be a human right and nobody should be a victim of non provision of crisis treatment. Details below:-
“Click to Donate” by Barney Jobson (about the broken US healthcare system): published 13th/14th January 2018.
Jan 10, 2018 – Online donation sites are booming as patients with little or no health insurance turn to strangers to help pay medical costs. … For the most fortunate Americans, these costs are covered by comprehensive insurance plans. … Eventually they relented — and joined the thousands of US …
The Question is why the foregoing:-
I diverged again so I am now returning to Mary at the Irish Cancer Society Daffodil Centre at St Vincent’s University Hospital. Re-assured with leaflets from the Irish Cancer Society on Radiotherapy, Radiotherapy and Breast Cancer, the Emotional Effects of Cancer; a diary named the Journey Journal, I left in the knowledge that my treatment will continue and as yet it will not be necessary in Ireland to have to crowdfund for treatment.
Week 2 – 18th February 2018
A deep breath and a little courage and off I went to Radiography building at St Vincent’s Private hospital, Merrion Road, Dublin 4. As I crossed the road I saw this man with his tannoy and a notice. I knew he must have had something important to say about BreastCheck. It is not easy to stand at the side of the road and make a statement in this busy world we occupy. His wife died from cancer. His mission is to encourage a change within BreastCheck so that they take account of the fact that when they send out letters to women (age 50-66) that they follow up when there is no attendance or no response. We both immediately understood why some women do not take up the option for the mammogram and it comes down to that word called FEAR. It this same FEAR that prevents men from checking out prostate cancer and fear concerning check-ups for cervical cancer. If we are to trust in the medical team who take on the responsibility to care for their patients with breast cancer or any other of 200 cancers known to exist, we must ask them to re-iterate to people the importance of early screening and the significance that this plays in either stopping the cancer from progressing or limiting the potential of mutations and the horrid implications if cancer spreads. Today – it hit really to the core of my being when I saw a woman waiting, having evidently come directly from the hospital, sitting in a wheelchair so very ill. All I can say to people is that if you can go for a screening, if you are a teenager and can receive a vaccine, be brave and go ahead. Cancer is to be avoided at all costs or limited at least to a minimum.
22nd February 2018: Another session of radiotherapy but today is different I have an appointment to see Professor John Armstrong, Consultant Radiologist Oncologist. After radiation treatment I returned upstairs and waited until I was called. Technology is so advanced in some ways. All I needed to do was present my card with the bar code for my file to appear on Professor Armstrong’s screen; but I must say I feel relieved when I see that the medical profession still rely on hard copy files but the key is that this file also has your bar code. Professor Armstrong asked me about side effects and I reported fatigue. He asked about what creams I was using which of course is as recommended Aqueous cream, nothing else. Being naive I asked the question that if I have gone through 9 sessions can you tell progress and eradication of cancer. This is a question I would not have asked if I had watched the Memorial Sloan Kettering youtube link which I now attach.
Oct 6, 2015 – Uploaded by Memorial Sloan Kettering
Medical oncologists at Memorial Sloan Kettering explain why targeted therapy represents one of the most …. http://www.youtube.com/watch?v=7ojmW80bDRg I am on Herceptin.
Friday 23rd February 2017. My appointment was for 11.45 today and that sense of yet another week over was so refreshing especially when you know that the team in Radiography at St Vincent’s Private hospital have their weekends free from a busy 8 am to 8 pm daily routine, Monday to Friday. Still a little unsure about the radiation, I asked for a little more clarification. This very pleasant radiographer explained that in my case the surgery had removed the cancer; the radiotherapy was like an insurance policy to eradicate any rogue cells; she explained that clips are inserted during surgery and these indicate where the cancer existed. The last 10 days the radiation targets the full breast and within a few days of the 19 sessions then the radiation will target where the clips are positioned but with greater intensity.
Week 3 – Monday 26th February 2018
“The Beast of the East” (snow, wind, rain and blizzard) is due to arrive but alarm is not on my agenda these days. It is getting to St. Vincent’s Private Hospital for radiotherapy. Each day the weather got worse but people with cancer are aware that certain deadlines just must be adhered to especially when radiotherapy and chemotherapy are concerned. As the week progressed you would people making more of an effort and arriving ahead of their appointments which enabled the team of radiographers to handle their caseload each day efficiently and effectively. Humility is something that comes to mind when you here of what another person has to go through with their cancer diagnosis. The weather was getting worse; Red Flag was the message. I started talking to someone beside me. He had traveled by train from Longford to Connolly Station; then I think he said the Luas and then the Dart to Sydney Parade and then he walked to the hospital. He had fed his farm animals that morning. He did not know if he would make it home to feed them and if he did if there would be water for them. I have to attend Radiotherapy for 19 consecutive days (weekends excluded) but this man has 30 days and he has the journey from Longford by public transport.
Tuesday 27th – it was a session of radiotherapy first; and then it was a visit to Oncology third floor St Vincent’s Private Hospital. Chemotherapy is over so the appointment was for 2 pm and Donna was the nurse assigned to me. The waiting area was full of people and it was a busy day for the team. I was delighted to see a face I knew and we got the opportunity to have a brief chat. Donna checked through my chart and asked the necessary questions about side effects and mood. Donna then suggested if I would like to see a psychologist with a specialty in oncology. I dithered but thanks to her diligence I decided I would attend and would await an appointment. Professor Crown checked through the file also and confirmed that from now on my treatment would be upward and he recognised that I was the person who has followed his twitter account for a few years now. (@canisgallicus). It was time for my intravenous Herceptin and finally I booked a taxi and returned home.
Another month passes and I am drifting just like the snow. I can only conclude that the memory deficits and dimmed executive functions that slow my day to snail’s pace are now to my benefit because I seem to have arrived at this stage of treatment for breast cancer without any tangible memories of same. It all comes back to that quotation of Lewis Carroll ‘It is a poor kind of memory that only works backwords’. The power of being within the day in the time of the internet with social media like Twitter works in my favour on yet another health related journey, only this time it is with breast cancer. I have just found a press cuttings (yes I collect them in my diary and more often than not when too many exist, I bin them), however this relates to cancer and something I did not understand and now do. Written by Catherine Shanahan and published in the Irish Examiner “New cancer treatment to reduce radiation risk to heart http://www.irishexaminer.com/…/new-cancer-treatment-to-reduce-radiation-risk-to-hear.
In my case, this is relevant. The cancer is in my left breast. Recently I had a heart echo without really understanding the significance. Referencing and quoting from the article explains accordingly:-
In the case of left sided breast cancer patients, there is a new radiotherapy service, Deep Inspiration Breath Hold (DIBH); its purpose is to reduce radiation doses to the heart. The launch took place at Cork University Hospital (CUH) and “should immediately benefit 60% of its breast cancer patients” …. an average of 180 people a year. I asked a member of the radiation team in St Vincent’s Private Hospital and it was explained that the machine used had the capacity but was not yet adapted for same. Presumably this has to do with cost. It is important to ask questions now because as the article states “This has long-term benefits to the patient and reduces the rate of morbidity and mortality”. The HSE go on to say that this new therapy “was enabled through a multi-disciplinary effort in CUH’s radiotherapy oncology department”. The funding was provided by an independent charity Aid Cancer Treatment (based in Cork).
Aid Cancer Treatment is a completely voluntary organisation based in Cork. We aim to help those diagnosed with cancer in a practical way by helping to fund the latest equipment necessary to treat cancer refurbishing and redecorating the waiting rooms and wards where those diagnosed spend the majority… Continue …
Below is a link to my health history from 1993 to 2016
I include this because for a number of years I was diagnosed and severely debilitated by Chronic Fatigue syndrome. The fatigue from both chemotherapy; or radiation did not compare to the impact of that ‘drop dead exhaustion’ experienced with chronic fatigue.
There is some research into link between chronic fatigue and breast cancer – see link.