It is so hard to believe but I have just had two weeks without any need to go to St Vincent’s Private Hospital. Easter is now over and it is time to start thinking along the lines of being a breast cancer survivor. It was time for a renewal of my three monthly supply of medications and to get a blood check for Lithium levels. My GP Dr Peter Cahill has worked alongside Boots pharmacy in Upper Baggot Street, Dublin 4, as a diligent team to remove much of the stress associated with being diagnosed with cancer; while being medicated for bipolar and anxiety also.
I was given a book on loan because it was special to the person lending it to me. Having read it I don’t think I would recommend it to others with a diagnosis of breast cancer because it is a bitter stark reality of a Mum, Ruth Picardie, Journalist, back in the 1990’s who was diagnosed with breast cancer and who died within one year. As I have no doubt said many times before the fact that memory deficits erode all details on a daily basis; it is difficult for me to record any side effects or identify with what I really feel about having breast cancer so this alters my experience with that of other people with the same diagnosis. The book title is “Before I Say Goodbye” by Ruth Picardie (10 pence was donated to the Lavender Trust http://www.breastcancercare.org.uk › Donate › Other ways to give for every copy sold) and the title goes on to state ‘The bottom line is, I’m dying’. At first I was shocked that anyone would give such a book to a person diagnosed with breast cancer but as I gently read each page I realised that it acted as a prompt to me to be diligent in noting side effects and being aware of the possibilities of secondary cancer as detailed in this link https://www.cancer.gov/publications/dictionaries/cancer-terms/def/secondary-tumor and also the importance of notifying the medical team about any abnormal changes, no matter how insignificant. Also, it made me realise that no two cases are the same. Ruth Picardie, unlike me, was leaving behind twin children aged 2 years and her young husband. Ruth was only 33 years old and since Ruth passed away in 1998, there have been massive improvements in cancer diagnosis and treatment over the last two decades. http://medhum.med.nyu.edu/view/11933
The idea of including the exchange of emails with friends and readers of Ruth’s articles in the Observer magazine highlighted how necessary it is for me to keep a diary and details of symptoms which I must report to the medical team. I have fatigue and I need to sleep for an hour in the evening but again I have no doubt said this before, the fatigue in no way resembles what I experienced for many years with Chronic Fatigue. I notice my vision is blurred and occasionally I get a sharp pain in my left eye, but it is only momentary. By evening time my lower back aches but it is not so severe that I need to take pain medication. Then of course there is my right thumb. It is swollen but I have been assured this is nothing to do with cancer. I have to say that when I feel a little arthritic all I can say is not Arthritis too. Sickness is a lonely journey; KT is so protective over me I don’t want to cause him any more worry than he has at present. For now, I will leave the book and return to day to day life.
I look at the comb beside my bed and then I remember my hair which is non existent. I just cannot wear the wig; I am happy with my night hat and my day hat. After routine of treatment, having me time means I could have coffee at our local Insomnia and meet up with special friends. April 5th with nobody to meet and a little time to explore I decided to go to the Irish Cancer Society (Charity/Third Sector) in Northumberland Road, Dublin 4, http://www.cancer.ie/ and see if I could gather up some more leaflets. I browsed and a very engaged receptionist asked if I needed anything else. I suspect she identified that I had cancer because of my blue hat and no hair falling beyond its tight parameters. I stuttered a bit; but when she asked if I would like to meet a nurse if available, I said yes and later was really pleased to have met with Nurse Susan. It is so important to know that there are people who are there to give advice especially when people are ill. My experience is negligible support is truly given by the charities related to Depression or for that matter Traumatic Brain Injury. I exclude both Aware (St Patrick’s Foundation hospital http://www.aware.ie/, the monthly lectures and Headway http://headway.ie/ but their support is limited especially as the years roll on and you adapt to your state of mind and reduced abilities.
Nurse Susan met me in the reception area and brought me to a very comfortable room where we could chat. Immediately she conveyed that I was in a secure environment and she was there to assist me. I realised that I had been mulling around side effects but doing nothing about them. I had forgotten that I was told by Oncology ‘no matter how insignificant a change to call Oncology’. Susan appropriately did not give me the answers to my questions about my perceived symptoms but she asked when I was due to go to the hospital and said write out a list and give it to the team. She then asked about my diet and stressed the importance of eating fruit vegetables and importance of a breakfast including some toast, cereal or scrambled eggs. She said that I could buy frozen fish and vegetables because they retained their nutrients and said to avoid chips and cakes and that it was important to avoid processed foods. This may seem so obvious but sometimes you just need an outsider to remind you.
Being interested in research for decades now, I asked Susan about Research and the Irish Cancer Society. She told me there was a comprehensive area dedicated to research and affiliated to leading hospitals. Then she explained that I might be interested in the “Psycho-Social” aspect of being a cancer patient. There are two locations in Dublin and it is available to people with cancer and there are talks for cancer patients families and carers, one location is South Circular Road, which is nearest to me and the other is in Eccles Street on the Northside of Dublin. The drop-in centres of ARC Cancer Support Centres http://arccancersupport.ie/drop-in-centres Every month you can download their monthly calendar enabling you to plan your day around sessions that there are available. These include Relaxation and Visualisation; Yoga; Pilates; Knitting Group, Open Men’s Cancer Peer Support Group; Women’s Peer Support Group; Secondary Cancer Peer Support Group. Also subject to booking you have access to special Citizens Information; Boots Positive Appearance and Carers Stress Management (4 wk programme). Services by appointment including counselling (short-term), acupuncture, reflexology, Roches wig fitting and breast care services are also provided. Also by appointment at South Circular Road only you can have manual lymph damage and bio-therapy, metamorphosis, IHM. There is so much more offered and so practical too. There is even a workshop on Wills and Probate in April for people affected by cancer (presented by Caroline McCall from the High Court Probate Office) on 26th April. So much available but thankfully my partner, my canine best friend Freddie, writing, social media especially Twitter means I have learned through past experiences to be alone but not lonely. I left the Irish Cancer Society in confidence and aware that I am lucky in that the support system surrounds me. I thanked Susan and I knew that I would write the list. The blurred vision worries me.
Now it is time to return to Ruth Picardie “Before I say Goodbye”. It is not Ruth’s narrative that has captured my attention, because every cancer patient travels their own journey but it is that of her husband, Matt Seaton, also a Journalist. My experience through manic depression, traumatic brain injury, and now breast cancer, it is those closest to you who have to cope with a crisis in your health that impacts on their lives.
to quote sentences that cause reaction within me
“…but in retrospect the lump not only grew within her, but between us, spreading, as inexorably as the cancer itself did.
…You always imagine death as a sudden event, a clear break between being and non being, possession and loss, and for some, facing perhaps the dreadful trauma of losing a loved one killed suddenly in an accident, that is how it must be.
But with a progressive disease like cancer, dying is a relentless attritional process of estrangement. You so much to do and say the right thing, but you are doomed to frustration, failure and regret. The only really ‘right thing’ would be to make the person you love well again, and that is the one great godlike task you cannot perform”
The cancer had interpolated itself, sending out its rogue cells to multiply madly and lay waste like an army of termites. Cancer changed everything; it put us on different tracks, stretching our grasp of one another to the limit and eventually forcing us apart. In the end, I could not reach her, and it felt like a failure in me. And then she was gone.”
Michelle mulls on this and hopes from the bottom of her heart that if cancer spreads that KT will not suffer in this way because since the day of I met him, waitng for the 46A bus on Morehampton Road, Dublin 4, to go to Church in St Patrick’s Cathedral, while in much despair and ill-health, KT has stood by me through thick and thin and as you will see from the attached link, the journey was one of building self esteem, teaching me how to cope with traumatic brain injury, bipolar, anxiety, chronic fatigue https://canisgallicus.com/2015/03/12/nietzche-he-who-has-the-reason-why-can-deal-with-any-how/ It was November 2003 that KT appeared and he became my advocate to navigate inclusion in a new community without what destiny seemed to be telling me and that was plans made by others to curtail my life to one of routine and constraint. KT encouraged me to meet people; to talk to them; to write; to engage; to have rows with him especially knowing he would still stand by me and as our dear friend Joe Murray, Barrister, once said to me ‘he makes you laugh’. Life was a like conundrum, nothing really made sense but somehow in the trail of his confidence, I followed and felt a security that I never had before. There was a high price, in old fashioned terms, my family “disowned me” ie except on their terms ie brief meetings in hotels or coffee shops and solo.
I know if even the worst happens and secondaries occur, unlike another life, a life of over 14 years marriage, which when challenged with the outcome of traumatic brain injury, that person imposed a life of further hardship to the trauma of the injuries sustained. He had affairs and ultimately he married the woman who was pregnant with his child and he divorced me. Therein lies the pain in my life that has created the wisdom and peace that I now have with KT and the security he has created for me. My divorce cam through in 2000 and I was so relieved to be through the desolation that lasted over four years. But revenge did not stop with the decision of the Judge in the Family Courts (Divorce). No there had to be a justification for the woman bearing his child to have recognition as his wife but at the cost of declaring our marriage of over 14 years as non existent, most likely based on the crude analysis called ‘Insanity’. The Catholic Church said our marriage was void. I have detailed the experience, especially when you are most vulnerable and a woman, when your case is called before those ‘Men in Frocks’ as KT calls them in the Archbishop Palace https://canisgallicus.com/2015/09/09/pope-francis-bureaucracy-and-costly-system-currently-in-place-for-church-annulments-a-path-to-justice-for-one-condemned-by-men-in-black-in-hidden-canonical-courts/ KT met me in the middle of this hideous affront and he negotiated with the Archbishop and others but the Annulment proceeded; I had no case; most probably as later confirmed that the woman expecting my partner’s child, wanted a Church Wedding, as did her mother.
I have left this behind; but it has given me strength of character to take each day as it comes and I know KT will have no regrets if anything should result in my passing. He has fought for me every step of the way and as I say he has given me that sense of security, I never had.
20th April 2018: Happy Birthday Bud; I am so sad you are no longer meeting me at the Westin. I must admit avoidance prevents me from going into town because I always associate it with meeting you and knowing that you have passed away, to hopefully a better place and that you are again among the people who were important to you. Me – I have so little true faith but somehow today suggests fate or faith, created a question. KT went shopping and returned with a beautiful bunch of deep red roses; the memories flowed in of your rose garden and of course Johnnie who always wore a rose in his lapel. This could have no significance but then it is too much of a coincidence. Too add to this it is a beautiful day Rose, the cherry blossom trees are pink and white; and life goes on but the loss is still felt.
Back to the cancer journey, April 10th 2018, I met with Professor Crown and as advised by Susan (Irish Cancer Society) I had a note of the side effects. The main concern for me was the blurred vision, the occasional dart of sharp pain in my left eye and my fear of aphasia. Professor Crown carried out the pen test and decided it was time for an MRI. As yet, I have not received the results so I presume all is okay; and that these are side effects of Herceptin intravenous every three weeks. I am still struggling with my vision, the dart of pain still exists as does ache in my lower back. Fatigue also applies but fear could be a large component. My two main fears in life depression (that requires hospitalisation) or dementia. A simple problem with spelling creates panic and sometimes when I am typing for KT recently I am finding it hard to work out whether it is the blurred vision, aphasia or recall of spellings. As bipolar I am allowed to have a little neurosis; so enough of this topic and time to move on. Today the nurses encountered problems locating suitable veins so when they were told about the MRI it was decided that the cannula drip once put in place for the Herceptin would be used again for the MRI. I had several hours to wait for the MRI so luckily as always I had a selection of reading material so I had a coffee, read and then went to Radiology. Thankfully the woman in the chair next to me, who had cancer for 18 years with 10 years remission, warned me about the noise element of the MRI http://www.webmd.com/a-to-z-guides/what-is-an-mri What a relief she told me and it was exactly as she had said:- Think of the noise on a busy construction site and yes it was 30 minutes of this noise – assorted. No doubt I have had MRI’s in the past but I had forgotten about what is involved. You basically strip to your panties only your head emerges into a machine and a shield like the one hurling players wear is placed over your head. You are told to keep your eyes closed and you are given a bell just in case claustrophobia takes hold. Half an hour later I was free to return home. Again I am so lucky in that I live near the hospital, just a taxi journey and the receptionist phones for a taxi while you sit in the lobby (like a hotel) and wait. KT and our dog Freddie were waiting for me; yes I know KT was anxious but this will be the case for a couple of years going forward; that is what cancer is about. There is no cure as yet but you are called for tests and if the news is good, you are told you are cancer clear for a year.
The oncology team under the direction of Professor Crown suggested that I attend the Oncology Clinical Psychologist, Dr. Isabella. Tuesday 17th April I attended Dr Isabella at St Vincent’s Private hospital. It was very helpful but we jointly decided that I have developed over the two decades of being ill a coping strategy and it was unlikely that counseling would be of any benefit to me. Dr Isabella reassured me that if I felt at a later stage I needed to see her, this would be possible. We discussed suicide; Dr Isabella explained that any sessions we would have would be confidential but that in the case of suicide ideation, she would be bound to notify the Oncology team. My belief is that when you are going through cancer it is very important to have the support of a Psychologist as part of your team but in my case due to brain injury and amnesia, I just don’t recall the past or what has happened (hence the reason for journal) and have extremely limited means of creating a plan going forward because I live in ‘Groundhog Day’. However, I still retain what they call emotional intelligence and I am aware enough to know what I fear and that (as I have said before) is depression and dementia but there are profound reasons for this as you can see from my health history.
I include this article http://www.the-scientist.com/?articles.view/articleNo/52098/title/A-Neuroscientist-s-Journey-Through-Madness/&utm_campaign=TS_DAILY%20NEWSLETTER_2018&utm_source=hs_email&utm_medium=email&utm_content=62300959&_hsenc=p2ANqtz–yedmPPOtxJQPf5vtXe6HKrwtvQs4F2un5VOthIZXi9X-O9pzp-ij5v3nTrAUjWFtaBRSYM_6tJV07iR49wKGJ9vllwQ&_hsmi=62300959/#.Wt4L4gkbTGI.wordpress because as I have written before my greatest fear is not so much breast cancer but severe depression or dementia. I had completely failed to take account of brain cancer and when I engaged with my daily dose of curiosity by way of the internet and emails today, I came across the above article. The words I quote sum up what I must have experienced in the past in the early days of traumatic brain injury which resulted in frontal lobe damage. I can identify with this description. I take great heart this woman, a neuroscientist, recovered and retraced the steps enough that she acknowledges that mental health is the poor relation of cancer, especially when it comes to the funding for research.
But unbeknownst to me or anyone else, a full-scale war had erupted inside my brain. Even as the immuno-therapy attacked the tumors that my doctors had irradiated, many new tumors were growing. My brain had become swollen and inflamed, and my frontal lobe function deteriorated rapidly. Soon my personality began to change…… I became increasingly angry and suspicious of my family and my colleagues, certain that they were plotting against me. I began to struggle with reading and tasks that required sustained attention. I behaved in ways that were out of character, sending emails to my colleagues in all caps, the electronic version of shouting, and dispatching an odd, misspelled email to the organizers of a professional conference. One day after work, I couldn’t find my car even though I parked it in the same spot every day, and I got lost going home. Increasingly, I was losing my memory—and my grip on reality.
Yes this describes what I fear most because on occasion I have experienced this level of confusion. From traumatic brain injury and unexplained changes to psychosis as a result of lithium poisoning, to changes in psychiatric medication involving detoxification, this irrationality burns into your core being and therein causes the fear of a return to what you possess but cannot understand.
The foregoing may explain why this article http://www.irishtimes.com/…/courts/…court/court-gives-go-ahead-for-mastectomy-on… by Mary Carolan is of particular significance to me. It concerns a case where a woman lacks the capacity to consent to a mastectomy because a tumour was detected October 2016. The words of particular significance are:-
The President of the High Court presiding: Mr Justice Peter Kelly, based on medical and psychiatric evidence showed that surgery was in the woman’s best interest.
“The evidence was the woman lacks understanding of and insight into the seriousness of her cancer and lacks capacity to consent to the surgery”
People should never forget that there are times in a person’s life that they may for some reason be deemed to be incapable to make a decision; that they may be made a ward of court; this can happen due to an outcome of ill-health, brain injury, mental health, or just simply becoming old and no longer able to live alone but herein lies the potential for massive injustice and it is a matter for the courts to review the evidence and make a decision on your behalf. This function of the Judiciary is to weigh up both sides of the argument as to whether the person has the necessary capacity or not. April 2016, the Assisted Decision Making (Capacity) Act came into existence and is comprehensive. A good explanation is provided by the Citizen’s Information Board http://www.citizensinformationboard.ie/downloads/relate/relate_2016_04.pdf
A further little piece of insight into dementia and my personal fears. Oliver Moody, Science Correspondent Irish Times wrote a succinct article with under the heading “Dementia sufferers are still tuned in” http://www.thetimes.co.uk/article/dementia-sufferers-are-still-tuned-in-3h8vlgvxc Research from the University of Utah findings give an explanation as to why patients so often may have lost other faculties but music remains. For hours I can go through the familiar songs that were core to my development as a human being at the tender ages like Summer Time (Porgy and Bess); to the Beatles in the 1960’s, to Peter Seeger ‘Where have all the Flowers Gone’ to Peter Gabriel, Christy Moore, Sinead O’Connor. Youtube is so wonderful for me because the prompts are there and once you engage you are taken back decades to feelings and times of significance in your life. There is a reason according to this article; I agree but I hope it is wrong in that this is the last of the senses to go:-
“The brain circuitry responsible for processing rhythms and melodies appears to be one of the last regions to succumb to the physical damage associated with the disease. Something about music, and particularly tunes people heard in their youth, seem to make it stick in the memory. There may be a highway in the brain know as the salience network, which runs from the most primitive regions to the areas handling higher cognitive processing….”Language and visual memory pathways are damaged early….but personalised music programmes can activate the brain”. I have problems with both. I cannot visualise or even imagine; my words are limited by Broca and speaking is with effort also. Writing is okay and it is most definitely enhanced when I have youtube playing songs at the same time as I write. I hope the MRI does not indicate brain tumours as secondaries.
Back to living in the day, the comb beside my bed reminds me of hair and yes at last my head is no longer bald, hair is appearing so I now know I am responding to treatment. We live in an apartment complex and I have to say my neighbours have been consistent in their good wishes. I received so many plants and flowers but was surprised to receive another beautiful arrangement tonight (the day of my Mum’s birthday). The family know about cancer from personal experience and they thought I looked a little tired and hence the kind gift. It is so important to be part of the community you live in; in the bad times people rally around to support you and this is the return part of everyday engagement. But there are many kinds of communities and I am a great believer in the potential of the virtual community especially social media and my choice is Twitter. People who are disadvantaged due to health deficits can engage with others in a similar situation and we can share. This article is worth reading if you want to know about cancer; about how former President of the US Richard Nixon “Declared War on Cancer” in the 1970’s, the importance but defects of mutations. This article is not for the faint hearted but if your journey with cancer is time limiting and you want answers, my belief is that ‘Knowledge is no load” and patients have lots to contribute.
Next week, May 1st, is time for my next chapter and it is Chapter 8. This article from the Guardian newspaper http://www.theguardian.com/society/2018/apr/22/cancer-mutations-and-the-facts-of-life-evolution-oncogene-robert-weinberg highlights the importance of screening and early cancer diagnosis. Nobody could have foretold at the time of reading this article that such a scandal would break in Ireland media channels in the last days of the month of April 2018 about both reckless and negligent procedures in the CervicalCheck programme. A most courageous, gallant, humble, compassionate woman named Vicky Phelan, who as a result of ‘Lack of Candour’ now faces terminal cancer, has been introduced to the people of Ireland and beyond, by television interviews, radio and newspaper articles. In her own words she stated that the women of Ireland can no longer place their trust in the CervicalCheck programme.
I conclude with this quotation from the article above:-
As American essayist Edward Abbey put it: “Growth for the sake of growth is the ideology of the cancer cell.” While he meant this as a critique of capitalism, he nailed the essence of cancer as well as any scientist has.