15th of December 2022
My last personal post was in October following my 5 year remission and cancer free diagnosis by my oncologist. An 8 year war, brutally battled and won.
In the post I mentioned that I was planning to release a very lengthy article on Mental Health which I intended highlighting issues over the many years of battling cancer. I had deleted two attempts of writing the article and to be very honest the one I actually completed will not be published. Taking the view point of a reader not a writer I found it too personal and some people especially in business would be offended by it. It’s all part of my own mental health battle.
Most people who follow my publications are aware that a close personal friend, Terry, is battling a rare form of cancer Stage 4 MPNST Sarcoma. We stay in close contact even with geographical boundaries. Terry mentioned during a conversation last week that particular dates and times throughout his ongoing battle with cancer have become very significant. The date & times of first diagnosis, various biopsies and meetings with medical professionals, starting time & dates of chemotherapy & radiotherapy. I’d never really considered this until that conversation and I realised how important these things are to cancer victims including myself. It was really a wake up call for me. Looking back over all my articles I realised how important dates and times really are to me.
15th of December 2014 a Monday. I was initially diagnosed of 14th of February 2014 with Stage 4 Hodgkins Lymphoma, my initial chemotherapy ABVD was at a very aggressive level, it had worked to a substantial degree but not 100%, 99% in blood cancer is not enough. A decision to use an extreme level of Targeted Radiotherapy was made. The targeted area was to the right side of my neck, covering roughly 4 inches square to include the back of my throat. I had an exposure of 40gm/grey which was 4gm above maximum level of exposure for that part of the body. The 4 weeks were hard, harder than the previous six months of Chemotherapy. My skin was badly burnt in the area exposed, the treatment damaged nerves in the area beyond repair. The damage was caused by exposure to radiation.
The meeting following treatment was with the radiologist oncologist who was in charge of this procedure, his assistant, two nurses and Anita on the 15th of December
11:30am 15th December 2014 I was officially diagnosed as Terminal – his words will forever echo in my mind “Enjoy your Christmas dinner because you’ll be in here for New year” “There’s nothing more we can do for you, you have about six weeks and we will help as much as possible” But he did not make eye contact with me, he simply stood up and left the room..
6 weeks to live and my reaction leaving the hospital that day when Anita asked what I thought “well honey he’s wrong”
8 years later I’m cancer free, he was wrong in more ways than one. Maybe all the scans and biopsies, the endurance of aggressive chemotherapy and radiotherapy indicated that I was dying but the human element and the patients mental positive approach were not taken into consideration, The lack of empathy by this senior medical professional was obvious. But this oncologist never met me again- no follow up.
Yes I had Christmas dinner with my Mum in her house in Dublin along with Anita, I’d also worked up to Christmas Eve and covered others who didn’t want to work over the following week and returned for New Years dinner with my Mum and Anita. I basically got stronger and more determined than ever to beat this disease.
The 3 years that followed held even greater challenges. When I fully relapsed in March 2017 and my main Oncologist was visibly emotional upset telling me that I had less than three months to live, I believed him but there was no way I was going out without a fight. Been accepted for clinical trials on Terminally ill Stage 4B Multiple Lymphoma was for me a final weapon to prevent cancer from ending my life
And as Terry experienced on more than one occasion, 3 months to live became a battle to beat. I recall a conversation on Terry’s first day on chemotherapy where a young Oncologist answered a question that Terry asked with “You do realize you have Stage 4 Cancer” not so much the words but they way she had said it, and thankfully Terry ignored the attitude – he was fully focused on beating cancer and did not need negativity from anyone especially a member of his medical team. The team now handling Terry’s clinical trial encourage positive thinking and are consistently complementing Terry on how he is handling the treatment. It makes a substantial difference to the patients mental health.
I absolutely understand that medical professionals have an obligation to tell the patient exact what the short or long term prognosis is but there are ways and means. It’s not about giving the victim a false hope but more to cover every eventual outcome. By nature we have a survival instinct and personally I have always felt that I would know when death is on it’s way. I felt it overwhelm me the week after my stem cell transplant but never before that, I pulled every piece of strength back then to survive. It’s nothing to do with bravery it’s the need to survive.
But there are events in life that scars our souls, dates, days, months, years, places and times. These scars are hidden but never fade. Every year as the 15th of December approaches I reflect on how dangerous the statement from that Oncologist was. But in 2017 it was different, I was ready to face death, without remorse and without regret. It is at that point that you reach a different level with a different view to the world we live in. “It is what it is, but it will be what you make it”
Website and WordPress
This is why I keep the sites active, we have 39,600 views from 155 countries worldwide. In added a Google translator to the main website www.hlai.ie to assist International readers. We are awaiting funding to add this facility to WordPress which is another reason for the GoFundMe page.
My initial aim after creating the first post was to spread awareness throughout Ireland, I had no idea that the international interest would get to this level. I commenced the WordPress blog in 2017 but backdated articles to cover all diagnoses and treatment. We do not promote the site and we do not allow advertisements on either site. Although we have looked to get a sponsor to assist financing the sites we have yet to be approached by any company suitable to support us.
I rebuilt the websites this year but especially www.hlai.ie which drives the most traffic to the WordPress site, in December 2022 I completed the site and our views have increased daily because of this.
I hope that 2023 will give us even greater exposure to promote Awareness to Cancer and the power of a positive approach to battling cancer
An Irish Blessing for Christmas
This Christmas may you have
Walls for the wind,
And a roof for the rain,
And drinks beside the fire,
Laughter to cheer you,
And those you love near you,
And all that your heart may desire.
Nollaig shona dhuit, agus athbhliain faoi mhaise dhuit
Year Summary 2017 – 2022