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;
This led to the following which I would recommend. 40 years on and oncologists from all over the world convene in San Antonio, Texas, US. It will take some time to read and listen to the video talks but the advances speak for themselves. The link is as follows:- http://nicb.ie/biotechnology/highlights-san-antonio-texas-breast-cancer-symposium-2017/
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.
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 (ACT) – EverydayHero
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.
To my partner, carer, best friend for over 14 years. This song says it all. Roy Orbison