‘He who has the why to live can bear almost any how’
Traumatic brain injury 1993.
Why such detail about my own personal health?
Traumatic brain injury “TBI” is an unknown. It is about the Brain. Today January 15th 2017 my fear of dementia advancing to Alzheimers is outlined and thanks to the aspect of the internet that is about information and value content, I make this available to readers who may be interested. We know about what the computer can account for and data analysis but this is a little bit like a patient’s attempt to keep a log of what it is that they encounter as distinct to what is gathered on the HSE/private healthcare sources computer records especially when you have lived in the UK and in Zimbabwe, Africa.
July 2017 update: Alzheimers/dementia is displaced as my most dreaded fear. Cancer is the next phase on the ever ending cycle of health related conditions over a period of 24 years. Today August 1st 3.45 pm, Michelle my case worker from BreastCheck has just phoned with the results of the Cat Scan…the cancer has not spread. The operation will go ahead August 17th. Ireland is understaffed significantly with neurologists compared with other OECD countries. Adaptive technology has allowed me to follow advancements in Traumatic brain injury cases. This is the latest from John Hopkins Medicine Organisation, US. It is so accurate. In the early days in 1993 and onwards so little was known but now there are vast changes. I highly recommend this link especially to people who have Traumatic brain injury or strokes. http://www.hopkinsmedicine.org › Health Library October 16th 2017 as Hurricane Ophelia rages outside I can safely say I as a person with TBI can identify with each category except I was fortunate enough not to get epilepsy. As far as Dr Linden is concerned and this is at experimental stages, I wonder if his theory about seratonin, can explain when TBI is followed by severe depression and the patient is put on SSRI’s, that they can improve.?
The BreastCheck http://www.breastcheck.ie/content/contact_us mammogram letter has resulted in a cancer diagnosis and an operation in August 2017. Today I met with the Anaesthetist to review medications and plan for the anaesthetic (as I take a “cocktail” of medications related to bipolar/anxiety) this needs attention of medical people concerned with the operation. I cannot begin to say how lucky I am because it is so easy to ignore these appointments for screening and in my case to forget about them. This is a letter I wrote to several people the day I met with the Surgeon to be told about the cancer.
Michelle Clarke – a call back within days to BreastCheck St Vincent’s University Hospital Dublin 4 yesterday.
All I can say is if only the rest of the HSE could adopt the model of medicine, care, hospitality, kindness of your BreastCheck service at St Vincent’s University Hospital, many lives would be saved and there would be far better patient outcomes. Another programme worth mentioning is Tilda http://tilda.tcd.ie/publications/reports/ – the research arm is based at Trinity College Dublin which provides a dedicated location base(s) similar to BreastCheck and it too works with great interaction, efficiency and most importantly makes older people realise that all does not rest with the professionals, the person has to engage with the professionals and take some responsibility in relation to their health outcomes and if this happens, healthcare has a future in this country.
My partner KT met Mr Crown (Oncologist) at the supermarket the other day. He spoke of BreastCheck being a very successful programme with many lives saved. I met Mr Gerraghty yesterday having interacted with many staff from radiology to ultrasound to those who bravely gave me the needle biopsy. At every stage there was someone to explain and because of TBI and memory issues I was treated with exceptional diligence. I was even offered a second cup of coffee. Notes and leaflets were given to me.
Only one or maybe two suggestions: I note you are on Facebook. Twitter is also an excellent means of communication. Secondly: when we left the clinic there was man with a loudspeaker on the other side of the road. We decided to talk to the quite elderly man, for his endeavours, but dedicated to making his point. BreastCheck works so very well because when you get the letter about your appointment, you don’t have to reply, you have to just attend. But for this man the system proved ineffective. He never realised that his wife had received 5 letters and most likely fear meant she did not attend the clinic on any of the occasions. She got a pain in her back but it was too late – secondaries had set in and she died. All John is trying to say to the Clinic please find a way of encouraging women to attend, and if someone does not turn up for say two appointments, make contact in someway with a family member or the GP.
Again I say thank you to those who work so diligently and compassionately at BreastCheck.
Being aware and diligent about your health, two other programmes deserve attention here: Tilda – because it is making massive inroads into making people aware and not afraid about their health; Trinity Neuroscience http://www.tcd.ie/Neuroscience/neil/people/personnel/s-brennan.php also and the person is Sabina Brennan. Dementia is reaching crisis levels as we age now and live longer. Memory deficits mean a very rigid routine; this makes it most probable that health checks are the bottom of the list and so often forgotten about.
Again thank you so much for returning faith in certain departments of the health service that others could most definitely learn from. Silos cause harm and great inefficiencies.
The quotation which for me is particularly significant and when you read through the above link, you will know that my life is around a daily routine, no holidays, nothing that leads to un-necessary confusion; it is called Groundhog Day but it works for me and this resulted from traumatic brain injury. The quotation is from Lewis Carroll (writer but mathematician) ‘It is a poor kind of memory that only works backwards’; add in my case, or planning going forward. I live each day and in the day using my writing abilities to record my life lived in the day with that of my pre-accident memory and in particular my childhood. It is my intention to create a timeline and I have already bought at Tesco my pink file to keep all documents and to make my journey through this cancer caught in time but in need of extraction in the hope that someone else will be helped by reading my personal journey.
Time Line: May, June, July, August…..2017
No symptoms. Fatigue yes but many years suffering from chronic fatigue http://www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/…/con-20022009, meant nothing serious about fatigue.
26th May 2017
A letter, via An Post, arrived from BreastCheck (The National Breast Screening Programme) with the Heading “The date for your free breast x-ray” is 29th June 2017 at 2 pm in the Merrion Screening Unity located at: BreastCheck, beside St. Vincent’s Hospital, Merrion Road, Dublin 4. KT who puts the order in my life ensured that I entered the details in my diary; and he placed the details in his diary so that I would attend. The letter is comprehensive. The onus is on you to attend on the date at the time stated. You do not have to confirm. (This in my case works well as the less complicated events are the better I understand what to do). The letter was signed by the Clinical Director, Professor Ann O’Doherty and covers the relevant details such as if you use a wheelchair or have breast implants; or have had a breast x-ray in the last year; if there is a wrong address and some other details. I include link with figures for 2015-2016 – http://www.hse.ie/eng/services/news/media/pressrel/BreastCh . . . Approximately 20,000 mammogram checks, approximately 46,000 do not attend appointments and nearly one thousand people diagnosed with cancer.
The final paragraph deals with the Why?
“Breast cancer is one of the most common causes of death from cancer among women in Ireland. Although there are a small number of cancers not detected by mammography, by going to regular screening, if there are changes they will be found as early as possible. Services like BreastCheck have significantly reduced the number of deaths from breast cancer in other countries. Please read the enclosed leaflet to find out what happens at the appointment. I strongly encourage you to take this opportunity to look after your health.
The National Screening Service is free. What is free we so often place no value on it. I recall when I first moved to live in Zimbabwe being so shocked by the poverty of the local people I tended to give away clothes. I listened to the ‘Monologue’ ie those who lived there for many years and it was simple. Take some money otherwise the gift has no worth or value.
The following are available: I am sure many know little about it but it is a good idea to be aware. BreastCheck, CervicalCheck, BowelScreen, Diabetic RetinaScreen.
I must be honest – I have continually avoided the CervicalChecks. It is true fear in my case. Now I must admit this is acting recklessly.
6th July 2017 (Strictly Private and Confidential: To be Opened by Addressee Only). For reasons explained previously, KT opens my post and organises my day. The letter asked if I needed an interpreter for this visit but in my case KT attended with me. The appointment was for 12th July 2017 at 8.15 am. This letter gave more details about staff who could be contacted and their telephone numbers. This letter includes point by point details of what the Recall Assessment is about. It also included the BreastCheck Information leaflet about ‘Core Biopsy and Fine Needle Aspiration’. It stated the telephone and fax number for the Radiology Department at St Vincent’s University Hospital. http://www.st_vincents.ie
12th July 2017
2 waiting rooms; those on the outside and those within. 20 people recalled all dressed in gowns and not a word spoken.
X-rays taken by two very pleasant radiographers. Being deaf in one ear and getting confused with instructions, they understood.
The Ultrasound. Dr Pender consulted with another Doctor to confirm that there was a small abnormality. They then proceeded with the needle, the biopsy. They had a most compassionate approach.
Then KT was called into a meeting room. We were given coffee and a booklet was given to me with areas highlighted that related to me specifically. My case worker is Michelle G. She organised for me to meet with Mr Gerraghty the Surgeon. Before leaving I was given several tasks to complete; some on the day. Bloods were taken at SVUH and I had a heart check also there. At the main hospital on the ground floor the Irish Cancer Society http://www.cancer.ie/ have an office. Shocked I spoke to a very nice woman who assured me that supports systems were in place and BreastCheck had an excellent track record. There are lots of brochures but it is a relief to know that there is a free 1800 200 700 to the Centre Nurseline.
18th July 2017 10.30 am
Again KT was there to support me. I met with the Anaesthetist. We discussed medications I was taking and it was agreed she would liaise with my psychiatrist Dr John Cooney. Mr Gerraghty (Surgeon) had already written to him about my case going forward. It was decided I would make an appointment to see Dr Cooney and KT organised this for 31st July 2017 at 3.30 pm. Boots Pharmacy http://www.boots.ie/ provide a Blister pack with my medications which details the generic drugs I take for depression and anxiety. I gave this to the psychiatrist and another one to Michelle the case worker. The next part of the process – Computer Tomography Patient Information leaflet.
24th July 2017 letter from St Vincent’s University Hospital. The appointment for the CT Chest/Abdo/Pelvis appointment on Friday 28th July 2017 at 11.45 am. The letter explained that cases from Intensive Care Unit or from other hospitals must be accommodated and these may cause long delays. It also provided details for women in the reproductive age. I was to take the letter with me to the appointment.
Friday 28th July 2017: A number of people were in the waiting room; some from other hospitals and there was one/two from ICU. I was given an orange flavoured drink to take at intervals over 1 hour. Then I was brought into radiology and the scan began. We arrived at 11.30 am and we were out of the hospital by 1 pm. Staff were friendly and service most efficient.
Monday 31st July 2017
Appointment with Dr John Cooney http://www.stjames.ie/Cancer/ConsultantsA-Z/C/DrJohnCooney.html re medications. Paramount for me is that my mood remains stable and there is no onset of depression or elation. Dr Cooney understands my approach of 1 2 3 4 5. This is about doing limited tasks in sequence so I remember what to do; and taking each day in segments, neither looking forward or looking back. The irony is with a cancer diagnosis, this is what the medical team would want to foster in people to stop them fretting and worrying. My cholesterol is high at 8 and statins may have to be added to the prescription. This could be caused by the Olansapine. Also it is necessary to avoid if possible diuretics and anti inflammatory drugs. Next appointment is 4 months time.
2nd August 2017
Michelle phoned. Nothing appeared on the scan. Next is operation on 17th August 2017. KT took the call. Time to tell family and friends that the cancer is contained.
Michelle (case worker) phoned KT. KT confirmed that Dr Cooney will be responding to Mr Gerraghty’s email. Fortunately, my Mother confirmed that she still had her eldest and only daughter (approaching her 60’s covered by VHI ie Voluntary Health Insurance so this gives me an advantage that some 50% of the people in Ireland do not have and that is private health care.
8th August 2017
Letter from Clinical Nurse Specialists in Breast Care re: admission to Hospital on August 17th 2017 in St. Vincent’s Private Hospital, Dublin 4. Surgery to take place later that day……
Important to note:
- Please come to the Merrion Screening Unit (BreastCheck) at 8.00 am on the morning of your surgery.
- Please contact the hospital the day prior to your admission between 9.30 am and 10.30 am to confirm bed availability: the contact number is 01 2638000
- Surgery may be cancelled if you come in sick with e.g. sore throat, chest infection, therefore if you are feeling unwell please contact the Merrion Screening Unit or the Hospital.
Then it deals with exactly what has to be done for Pre-Operative guidelines starting with: You can have tea and toast at 6am but please fast after this……….
If you are taking medication (which I am), please bring this with you. I take a mix of medications and it is at times like this I really appreciate Seana and the staff at Boots in Upper Baggot Street and the weekly “Blister Pack”.
13th August 2017
Support from people is overwhelming. Stories, narratives, are so much appreciated; I have just continued as normal, which if you read my site ‘Neitzche….’ will show that each day is a routine – no holidays, just the same every day. Get up, a few chores, computer, email and Twitter (quotations prompted by the day’s articles are read and then I re-tweet them as I think appropriate. @canisgallicus
17th August 2017
Sally both a friend and neighbour drove me to BreastCheck, St Vincent’s University Hospital, Dublin 4 – a short journey as I live in Dublin 4 for an 8.00 am appointment. 2 other women were facing a similar procedure to me. Claire, the Clinical Nurse in Breast Care was there to guide me to through the process. Initially I went for another ultra-sound but the Doctor decided to get radiography to search out the cancer so that it could be identified by the Consultant at the time of operation. There were three people in radiography to identify the cancer; it was deep within the breast. KT waited patiently for me in the waiting room.
Claire walked me to the Private Hospital at St Vincent’s and assisted me with check-in procedures (I was called up by ticket number). I was given room number 627 in the Elm unit on the 6th floor. All details for preparation were stated in letter mentioned earlier giving details of each clinical nurse and their telephone numbers, email @ firstname.lastname@example.org and http://www.breastcheck.ie The St. Vincent’s Private Hospital (Part of St. Vincent’s Healthcare Group, Patient & Visitor Information outlined what is available http://svph.ie/visitors/visitors-guide/ The advantage with VHI and BreastCheck is that all is confirmed before hand and there is no need to handle payments at a time when you are unwell and especially when you are awaiting surgery.
Concerned about those who have no health cover I asked Claire what happens. BreastCheck patients have access to the private hospital for pre-operation but the operation is carried out in the public hospital. Claire then said goodbye but that she would make contact with me later.
A male Health Assistant took over. He gave details about the workings of the room, the TV. He took blood pressure, pulse and something else. He then took swabs from my mouth and asked me to take swabs of my groin areas. They checked my weight and height before allocating the room. The next person to take details was the nurse on duty that day, Monica, on 8 am to 8 pm shift, giving you the confidence of knowing she was overseeing you through the 24 hr treatment in a consistent way.
A man arrived and said I am taking you to the Nuclear Department. I had never heard of this but the link I now include will give all the details. Nuclear Medicine is the way forward and enables precise surgery because the cancer can be identified in its location. http://www.imaginis.com/nuclear-medicine/nuclear-medicine-breast-imaging-scintimammo…
The procedure took about 2 hours including waiting time. The lymph nodes are highlighted with the die which is injected in four places by the radiologist. This shows up during surgery so that the surgeon can aim for precision incision. There is a corridor approximately .25 of mile between the two hospitals and the Nuclear room is in the main hospital. I returned to my room with another male assistant. The staff were so pleasant; which we often forget when we criticize the health service.
Mr Gerraghty came for a brief visit. He was gathering all the test results from the various contributors. He had a very gentle and reassuring manner. He kindly said after all the tests and questions; the surgery is the easy part. BreastCheck and the Consultant will make contact for an appointment to be set up to discuss the findings.
Monica (linked her name to kind person I knew) and she patiently sat down filling out all kinds of details into charts, forms and making various notes. There were lots of questions and many vague answers. I had sent my details to BreastCheck so I presume they were on some file, somewhere. The shift for Monica was 8 am to 8 pm so this ensured the necessary constancy to feel really cared for at a time of such vulnerability.
There were several patients at varying stages of treatment waiting for the Nuclear Room tests. Mary was to have the same operation as me but the MRI had identified a spot of cancer on the bladder, earlier on and Mr Gerraghty removed it with an operation.
2 pm I was still waiting for the operation. No food or drink since 6 am so I was very thirsty (I had taken my morning medications which have the side-effects of dry mouth). Then I recalled I had forgotten to tell Monica about Tallaght hospital visit and the lithium poisoning which left me with 70% kidney and the brocas (brain injury) problem.
I was called for surgery and Monica came with me to the operating theatre waiting room with the file. I met the Theatre sister; again each checked each others notes. Monica explained about rings on fingers and the need for observation. The room for pre-theatre was painted in a lovely comforting subtle blue with a deeper blue for the presses. It reminded me of my childhood in the drawing room at Belper, painted that same colour blue which I have loved all my life. The anaesthetist Dr Hickey explained the procedure. I was conscious going into the theatre and think I could see Mr Gerraghty (the Surgeon) reviewing the case file on the computer. The lights were bright and the theatre appeared to be the bedrock of efficiency. I last heard, it appears from my note book, pain control would be morphine and paracetamol.
Personal note: It is not unlike how democracy within Government should work. Various people gather your information and compile and file of detail. The Surgeon is like the Judge making the overall assessment on how to proceed to extract the rot. It is all the checks and balances that put’s your case, in the best light on the operating theatre table with the Surgeon, Anaesthetist and of course the team.
Kimberley was the night shift nurse – very kind, most efficient. I don’t recall visitors except for KT holding my hand and knowing that I was so lucky, and unlike many others, had someone who really cares for me. KT tells me that Monica was there with the file and support socks (to be worn for week) for me when I returned from the Theatre. I have noted that these can be washed and an additional pair bought in the pharmacy; they could be reused if I was taking a flight anywhere. The staff urged me to ring the bell if I needed anything but thankfully this was not necessary. Kimberley checked several times and at 1 am because my medications were not working and I was not sleeping, Kimberly gave me a throat lozenger for my sore throat and hot milk to help me sleep. Kimberly told me that I was in theatre for 1 hr and and in the preparatory and recovery sections and the total time was 3 pm to 6 pm. The room I was in was large and the walk-in shower room. I could not work out the lights so I left them on all night as I did with the TV. I would have felt very alone without the TV even though I was not grasping the news. Disorientation and balance made me feel a little uneasy and addled. Thankfully I had not unpacked my case so my exit was easier; Monica gave me my blister pack of medications so all was efficiently carried out.
18th August 2017
7.30 am Mr Gerraghty came to tell me that the operation went well and that he would be meeting with me. I would receive details about the appointment.
Followed by breakfast.
Monica was back again for the morning shift at 8 am to 8 pm. It was time to do the follow up on the notes in the file. She explained about the tights and the purpose is to avoid blood clots. Carefully she removed the bandages from the two wounds (breast and lymph) and replaced the dressings. I will need to change the water-tight bandage within 72 hours and can phone the hospital, night or day, if I have any problems. They do not work during the weekends but you can phone a clinical nurse at St. Vincent’s Hospital if you need assistance.
BreastCheck and Claire then fall in line again. Claire phoned me to tell me my next appointment would be the following week and that I would be returning to the BreastCheck clinic. Claire advised me to wear the bra night and day for support. Claire also confirmed that I needed to take the paracetamol three times a day. By 9 pm and third nurse arrived to assist Monica with the discharge procedure. It was time for me to return home. Sally and KT were there to collect me.
Anaesthetic with the cocktail of medications I take for bipolar, anxiety made me think of Alfred Prufrock, the poem going back to my school days and the words ‘etherised upon a table’. One of T.S. Eliott’s poem. There was a feeling of clarity penetrating the fog that normally persists and blocks a flow of words or a sequence of thoughts. (This is the flow of words that the mind constructs and which can be written where the damage from the fractured skull damaged the Brocas area; and the infuriating fact is you cannot get the words in the sequence in the way you want others to interpret them.
Before I left St. Vincent’s Hospital, I was given two sets of instruction, in note form which is essential because to rely on memory is very difficult after an anaesthetic.
Post Breast Surgery Wound Care Information
Your dressing may be changed prior to discharge this should be left undisturbed for approximately 72 hours; if there is oozing from the wound or irritation from the dressing, it should be changed. You may have a shower after 24 hours leaving the waterproof dressing in place. Do not remove the sterstrips (paper stitches) for 7 to 10 days or until you return for your follow-up appointment. If you do have any difficulty with your wound contact your breastcare nurse or your family doctor.
We will contact you with a follow-up appointment to see the doctor for your results.
The Breast Care Nurses can be contacted on the following phone numbers Monday to Friday 01 2235844 / 01 2235845
Inpatient Nursing Discharge Plan signed off by me on August 18th 2017
Reason for admission: Left wide local excision and SNB u/sound
Procedure performed: Left wide local excision/centred node biopsy & mastepexy
19th August and 20th August: Walks for circulation; rest
21st August 2017
Prompt early post delivery and a letter from BreastCheck (Ruth BreastCheck and two telephone numbers) detailing exercises for post surgery and a note informing me that if I had any question to not hesitate to phone them.
You may ask why I write this. Many people ignore the appointments and do not attend. This is an opportunity to engage with Preventive (Public Health medicine also) medicine http://www.hopkinsmedicine.org › Executive & Preventive Health Program and it many cases results in people who have no signs of cancer having a diagnosis made and a treatment plan put in place.
One more significant point: In the main hospital near the bloods section there used to be a notice that stated in one calendar year, the cost to the hospital of people not attending appointments was approximately e3.5 million. This is a disgrace and not necessary. Your health is your wealth.
Today Sunday 27th August 2017
Still wearing socks for blood circulation
Working off 1 to 5 routine as per Groundhog Day routine and adding in exercises, washing socks, wearing bra night and day and by now the wound is really itchy suggesting healing, I would think.
Phones: Executive function damage from brain injury means the phone is not part of my day. I use so that my partner can contact to remind me to do tasks when out but that is where it ends. I don’t recall to check messages or make phone calls. My grounding is the computer on the desk which I go to every day without fail. I use email, Google, WordPress.com and Twitter – so this is all about augmenting memory and engaging with the world.
I am here typing and recall little of the week but must thank friends for beautiful flowers, visits, cards, good wishes and especially the many neighbours in our area and their kind words. One neighbour beckoned us to his house. He was sitting in his car with his adorable little grandson, aged 3 maybe 4. The little boy had been diagnosed with leukaemia but he was so happy just sitting in his grandfather’s car; it makes you think of all those out there looking for cures for the dreaded C word.
Ruth the Clinical Director at BreastCheck spoke with KT last week. I am due for follow up appointment with Mr Gerraghty on Tuesday 29th August 2017 at 10.45 pm.
29th August 2017
The appointment was for 10.50 at the BreastCheck Merrion centre, Dublin 4. There was only one other couple in the waiting room. Silence. First they were called in and then it was KT and myself. We were brought to a room to meet Mr Gerraghty, who was dressed in work gown. A woman was there to take note. Both Kevin and I had arrested our thought process with the operation and the news that it was deeper cut without any consequences. The good factor was that they also removed the sentinel node under the left arm and there was no trace of cancer found. Mr Gerraghty, with authority and presence to give the patient and family the feeling of trust that it is needed when medical intervention is needed. The cut (11 cm) was on the low scale and he reiterated that the removal obliterated the cancer in the breast but he gave the analogy of North Korea and a missile strike and a shield to prevent effect and this was about the necessity of Chemotherapy which we thought from the first meeting was not going to be necessary. Mr Gerraghty confidently reassured us that it was must decision because of rogue cells and making sure to obliterate them. He said to my partner KT (and me) that if it was his wife he knew what decision he would be making and that was Chemotherapy. Shocked and afraid of the horror stories people tell you. I listened further to his decision. He said the margins were clear. The multi-disciplinary team (MLT) including Professor Armstrong and others) had a meeting; they took account of the acquired brain injury, the medications, the depression et al. Professor Armstrong (Radiology/Oncology – http://svph.ie/gp-area/consultants/) will be part of the team and Mr Gerraghty asked me had I anybody in mind for Oncology, I said that I know Professor Crown through twitter and Mr Gerraghty said that Professor Crown was the man they thought would be best for me. The meeting lasted about 15 minutes but when someone as qualified as a surgeon has confidence in the game plan of treating the cancer going forward, it gives you confidence that you are in safe hands.
When we left Mr Gerraghty, Claire (Clinical nurse) came to deal with the wound. She was most reassuring. I had not taken off any bandages and must admit stuck more bandages on top of the old ones. Thankfully, Claire said I had good healing powers (I eat 6 oranges every day and melon several times a week; the reason being is that with the chronic fatigue for over 6 years we knew it was very important to keep the immune system boosted). I take Vitamin B12 by injection every 3 months also.
Michelle (Clinical nurse) for me a case worker who conveyed all the necessary details in a comprehensive way to leave you feeling more assured met with us in a reception room. We explained our fears about the chemotherapy; we raised queries about the VHI, she explained to us that I would be called back to see Mr Gerraghty in about 6 months and from now on I would be called for a mammogram every year. However, BreastCheck hands over files to Professor Crown now. She did say if we had any problems to make contact with them. Again Michelle went through what Professor Gerraghty explained about the lymph gland, the fact that he felt that it was a very good outcome, that the drug Herceptin http://www.breastcancer.org › Treatment & Side Effects › Targeted Therapy › Herceptin was to be prescribed for Chemotherapy. The drugs aims at getting rid of any rogue cells. Michelle outlined the plan to KT and gave us until Thursday 29th to make our decision. Michelle also reminded me about the Irish Cancer Society book that she highlighted for me and that I should look at it again. I have a pink folder (organised in details of the process) so I will do this.
Thursday 31st August 2017
KT phoned Michelle as agreed. The plan is that I attend Professor Crown in his rooms at St Vincent’s Hospital, most likely within 3 weeks and I will attend Radiology in St Lukes in Rathgar (Professor Armstrong) in the near future. We thanked Michelle for all the assistance.
Memory deficits are a major advantage to me because I am within the day; I so easily forget and then just drift day to day. In some cultures people strive to live in the day; in my life I can only do that because of memory problems from the ABI.
The Pink Book – I cannot find the link but it is so important because really you need to understand what is about to happen to you. So far for me is being so very tired and yet my mood (bipolar) is level, no highs no lows yet, just level.
Thankfully I live near the Irish Cancer Society in 43/45 Northumberland Road (a 15 minute walk), Dublin 4.
Telephone: 021 231 0500
Cancer Nurseline Freephone 1800 200 700
I am informed by this little Pink Book, the connection with Michelle and Claire at BreastCheck and I have the details of people I can phone or email or visit as about.
To conclude this: this will be the quotation on next entry to http://wordpress.com in the weeks to come before I meet Professor Crown, Professor Armstrong and their teams specialised in cancer, and in my case cancer of the breast.
Claire and I said goodbye but she said I could make contact with them if I encountered any difficulties or needed some support. Claire explained that my next meeting would be with Professor John Crown, Oncologist and Professor John Armstrong – Radiation Oncologist.
As a result of the cancer finding, in future (until age 75). I will receive a mammogram every year at St. Vincent’s Hospital. She also explained that there will be a follow up with Mr Gerraghty in 9 months in SVUH. Thankfully, she wrote this down for me because I would definitely forget these necessary details and reassurances.
Dr Google is not part of the agenda because that is what the BreastCheck team advises. However I have had too many medical conditions over the last 20+ years to be able to heed this advise so what you will find herein is recommendations from my searches but this time relating to breast cancer. If you want to know my health history since 1993 you just got http;//canisgallicus.com search for Nietzche “he who has the reason why can deal with any how and you will understand how important the computer, the email, the Google, Twitter have been to me especially when traumatic brain injury leaves you basically in Groundhog day. So I am going to consult, as this has been my lifeline, Dr Google. http://Nietzche ‘He who has the reason why to live can bear almost any how’ Traumatic brain injury 1993. Medical history in detail and to date by Michelle Clarke Share this:
What Dr Google/Watson/TED/TEDMED/CharlieRose/Youtube/SingularityHub et al can do for me. I can only understand in the moment. I have no ability to memorise so maybe this makes it so much easier for a person with memory deficits: I start with a quotation. In the early days before Twitter, Google, Youtube, I avidly went to second hand book shops and bought many books. Then I began the ardent task of taking quotations and typing them up so that when I had time with nothing in my head I could read them and seek some form of hope from others and their writings. I have lever arches of files and most of them are on my computer also – dual purpose. I select this one because I like it, it gives hope.
We shall not cease from exploration
and at the end of all our exploring
Will be to arrive where we started
and know the place for the first time
Since childhood I have battled with depression, stress, anxiety, phobias – the irony is cancer now. Do we know if there are connections?
Below I include interesting articles, TEDMED talks, TEDTalks, Charlie Rose Talks, an Exponential talk, links which may be of interest to other people.
Michelle Clarke @canisgallicus
WordPress.com: search canisgallicus.com
August 2017 onwards
Sub-Section: Scrolling daily the computer, I am now adding Cancer as it specifically relates to my case, and aim to include the links I feel are relevant to this site.
Recommendations: To anyone interested in Cancer and its diagnosis and a patient (me) acting as their own advocate to help others.
The Medical profession and people warn don’t Dr Google it ie Cancer but I cannot do this. I am going to take advantage of my inability to form memories as a result of traumatic brain injury and as I did in 1993 when I kept using the computer and moved along gently from writing letters via email, to Google to find out as much as I could about Traumatic brain injury, Depression, Chronic Fatigue, Anxiety and memory problems, to You-Tube, to Twitter which is the way I endorse my deep set belief system by reading quotations and tweeting them; while at the same time using the Twitter to augment my memory and hence make it possible for my engagement at a social level. So now I am taking the same approach towards the diagnosis of Cancer. I will outline articles, the content of which I will forget and likewise documentaries, interviews which I will immediately forget but the system and this site will outline what I have engaged with and what impressed me, in a period of being most vulnerable but due to memory deficits not to the same level as others so diagnosed or for my partner KT, family members and friends.
Michelle Clarke to be continued. Very tired now but not to the same degree as Chronic Fatigue which impacted on at least 6 years of my life, post TBI and Bipolar.
I watch TED Talks. Short Sharp Incisive information. I have never noticed a talk on cancer but I recommend the following:-
September 1st week 2017:
I found a book in my store: Eric Topol – The patient will see you now. So much of what this Cardiologist/Geneticist explains is so very relevant. I have Googled him and there are lots of talks; I recommend this one because it is about the power of the Smartphone which he regards to be as powerful a change mechanism as the Gutenberg Press 500 years+ ago. It is impressive and the mobile especially the smartphone is the next task I will try and master, if I can find some young person to help me by being tolerant and patient. The link about the power of the Smartphone and Dr Eric Topol: http://www.youtube.com/watch?v=mj7tndUxFXM
and private research foundation, Eric Topol is involved with, called Scripps http://www.scripps.edu/discover/cancer.html
Ask the question have you been asked about the density of your breast? A female, a doctor, an inventor (and we need so many more of them) adapted the mammography equipment along with others from Physics to Radiology. Please listen to this and ask about the density of your breast mammogram: I will and thank you to these ‘seeing beyond from the professions’
In America if you want to be part of a clinical trial, you can go to this link, I don’t know if there is a similar link in Ireland. http://www.clinicaltrials.gov/ct2/home
TED Talks have one big advantage. They last just 20 minutes. Enough time to engage and not get bored.
Jimmy Lin: A simple new blood test that can catch cancer early | TED – July 2017 https://www.ted.com/…/jimmy_lin_a_simple_new_blood_test_that_…
I watch Charlie Rose, Bloomberg TV). I first started watching Charlie Rose (Eric Kandel, Nobel Laureate) in connection with the Brain series and interviews I could connect with. I now follow on to Charlie Rose and Cancer.
Siddhartha Mukherjee http://charlierose.com/videos/30332
A look at the future of automated medicine with Columbia assistant professor Siddhartha Mukherjee, the author of a new piece in The New Yorker,
“The Algorithm Will See You Now.”
This doctor speaks about ‘regulations and patterns’. It is easy to learn off a list of regulations but my experience of 2 GP’s who made a most accurate diagnosis, (Dr Alice Murnane re TBI contrecoup http://www.merriam-webster.com/medical/contrecoup; and Dr Martin Callinan re lithium poisoning) come to mind as I listen to this doctor talking about AI. It is beyond the list and into the sphere of good observation, experience and yes regulations but more so it is patterns and confidence to say enough and refer to a consultant. A general practitioner with a keen eye for diagnosis in the medicine of the 1970’s, 1980’s would often gain the keen attention of the Consultants to whom the patient was referred.
About Otis Brawley
Otis Webb Brawley, M.D., is the chief medical officer of the American Cancer Society, responsible for promoting cancer prevention, early detection, and high-quality treatment through cancer research and education.
War on cancer, year 40: who’s winning?
The Times of Israel
5 days ago – Israeli researchers said they may have found a way to reduce the risk of post-surgical cancer recurrence through the use of a drug regimen that …
Recommendations: To anyone interested in Cancer and its diagnosis and patient acting as their own advocate to help others.
The next phase will be visiting Professor Crown Oncologist at St Vincent’s University hospital to be followed with an appointment to meet Professor Armstrong, Radiology.
I close with this as a high recommendation from me, a mere patient but only by chance did I, on the advice of my partner, go for the mammogram test. Otherwise cancer would be gaining strength all the time as I became more exhausted and thinking that it was the Chronic Fatigue which I had before for several years, knowing there is nothing that can be done for it. The date is 25th September 2017. This is so important especially when we consider that a young boy, just school going edge, discovered a method of detecting pancreatic cancer – one of the most devious for hiding behind no symptoms as such.
The message is we must move towards screening for cancer. I really do recommend watching talk about Global XPRIZE
This is the first phase over and complete. Next phase will be Oncology and Radiology in a new posting.
‘Without knowing who I am and why I am here, life is impossible’ by Leo Tostoy (1828-1920) Russian writer.