My daily routine living with . . . lung cancer
‘Very independent, I booked one appointment after the other and attended each of them alone’
For lung cancer specifically, patients from the most deprived populations were 41% more likely to present as emergencies. Image: Getty
In mid-December 2016, I was one of many, one of too many, to receive the diagnosis from hell. The diagnosis others will get but not me. Or so I thought.
Maybe you were or are the same.
The optimism bias had lulled me into a false sense of security over all the years.
Irish, female, single, no children, older, very young at heart, the younger of two with minimal, if any, contact with my brother for many reasons – resentment of my mere existence being the main one in my view.
I am a professional in mental health living abroad in sunny climes.
In October and November 2016, I was about to set up my own business, but I had two bouts of bronchitis which I had self-medicated with Klacid. My first bout that year – a severe bout of wheezy bronchitis in March – had been treated with antibiotics by two GPs in Ireland. There was no mention of a chest x-ray by them or by me, which I question and regret – I had never been given a diagnosis of ‘wheezy bronchitis’ before and I believe that may well have been the beginning of what came next.
As my cough was so much worse in late 2016, I knew I needed a chest x-ray. But, apart from the cough, I felt very well and was exercising daily as usual.
In early December 2016, on being told by a pulmonologist that there was something on my right lung which could be seen on the chest x-ray, I remained optimistic (or in denial), but only very briefly as I knew a CT chest scan would reveal more. It revealed a large tumour (5 cm plus) and this result plummeted me into the need for a biopsy, Petscan, MRI brain and an MRI liver, as lung cancer tends to spread to the brain and the liver.
I’ve written the words you probably guessed. Maybe you too have been given this horrendous diagnosis. If so, I wonder how you coped. I hope you had supportive, kind, compassionate medics, family members and friends.
Remarkably, I only wept for hours on one occasion and just before the Petscan and the MRI liver. I shed some tears of fear with a kind stranger wearing a scarf who could fully understand my state and with the kind radiologist before the MRI liver as metastasis were suspected based on the Petscan results.
In fact, the Petscan finding was merely a harmless liver artifact. I could have hugged that radiologist when he (illegally) told me there was no liver metastasis.
I then began to google and learn about the different types of lung cancer (one of my steepest learning curves) renaming it ‘evil buggers’ or ‘ebs’.
I refused to use the ‘c’ word and to this day, and very rarely use it. Whatever it takes.
Very independent, I booked one appointment after the other and attended each of them alone. On December 16th, 2016, I read the biopsy results by email alone on my couch and confirmed the dreaded news to my very supportive friends on Skype and Viber. I also spoke to some of the Irish Cancer Society nurses on Skype who also were wonderfully supportive and to whom I am very grateful. They listened with so much understanding to my distress and concerns pre and post surgery.
There was no psychological support available for ‘ebs’ patients where I am living. By December 19th, I had all of the results and then met an oncologist for the first time.
I began by asking him for ‘my death sentence’. As my pulmonologist had been cold and very matter of fact, I had no idea how the oncologist would rank on the compassion scale. I was lucky. He is a kind man to whom I am very grateful, who spent two hours with me answering my many questions and informing me that the type of lung cancer I had, in his opinion, was operable (NSCLC/T2/NO/MO) and it had not spread to my brain or liver.
He told me I was lucky.
‘Lucky?’, I questioned indignantly.
‘Yes, lucky that it hasn’t spread. Lucky that we’re seeing it at an early stage. This rarely happens’, he replied.
He gave me the names of two surgeons whom I met on December 20th and 21st. I met each surgeon alone and, once again, posed my many questions. Knowledge is power and I needed as much as possible of both.
My consultation with the second surgeon who was half local and half New Zealander and who had studied in Harvard gave me the confidence that I needed. He was my man to whom I also remain very grateful. Frank, friendly, humble, compassionate and kind with a sense of humour, he explained all I needed to know and offered me a date for the bilobectomy (the removal of two lobes in my right lung) and the removal of many lymph nodes the following week.
He understood my occasional ambivalence for life and responded ‘you’re still young with lots to give’. Hmm, food for thought. He informed me about all of the risks attached to such surgery and assured me that he believed I would come through it very well.
Within the short space of 16 days in December, 2016, I had five tests and was told that I had a very aggressive form of lung cancer, which had not yet spread to any other part of my body. And I had been told that I was ‘lucky’, which I found very hard to believe or accept. Get your head and soul around all of that and keep smiling!
Just to keep me on my toes, I had broken a toe while walking on the beach on December 11th and needed a root canal dental treatment on December 20th.
All the while I had been sending all of the medical reports to my insurance company. They suddenly pulled the plug on December 22nd, declining payment for all of my pre-surgery tests and for the planned and very necessary surgery.
They argued that it was a pre-existing condition
I battled with them until early March 2017 when they closed my case.
Without the surgery, my surgeon had informed me that I very probably had a maximum of six months to live.
I was in a perfect storm. No work, two apartments in negative equity in Ireland (renting at the time, when I purchased them I had planned to live in one and the other one was to be my pension but I fled that sinking ship in December 2009 and moved to Austria – by the way, they are both still in negative equity and I lost a substantial amount of my capital) and I had insufficient funds to afford the surgery.
Online, I gained the support of the American Lung Association. I was assured that the surgery is manageable and many recover very well. I was very grateful for the kind words of these people, thanked them, wished them well and left the group post-surgery.
Of course, my tumour was growing by the day (it was over 6 cm when I had surgery) and could spread at any time.
It was like living with a built-in time bomb. I had options. I could have flown to Ireland for public hospital surgery in January 2017 (the consultants are not available for up to two weeks during the lengthy Irish Christmas break) where many stay on trolleys and a bed could not be guaranteed on any specific date as a trauma patient would always be given any bed which would have been booked for me.
In addition, I knew I was very vulnerable to getting another bout of bronchitis, which would have delayed surgery. I could also have flown to Europe for surgery. I opted to remain in the sunshine and pay for the surgery which, financially, I could not afford, but which physically, I believed would give me the best chance for great surgery and the best conditions in which to recover well. I requested financial help from local Irish societies to no avail (‘fly to Ireland’ was the response) and from local charities who would also not help as I was between visas.
With the help of a discount offered by the hospital and very kind friends, one of whom gifted me with some money and some to whom I still owe money (not requested by me, my brother offered me the price of a ticket to Ireland via a call from a second cousin, and a fast entry to a hospital bed as he has ‘contacts’) after many phone calls and emails, I booked my surgery in the sun for January 17th, 2017.
I have not heard one word directly from my brother since my diagnosis
And my only first cousin first offered to help financially but then refused to lend or give me any financial aid pre or post surgery – it can happen in the ‘best’ of families.
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I should add that I had not informed any member of my very small family about my diagnosis nor asked for any help – the small world back home had ensured that they were informed about my serious diagnosis by a third party.
The six-minute walk test and a stress ECG confirmed that my fitness level was good enough to survive the major surgery well and regain a good level of fitness post surgery.
This was very important to me as a keen tennis player, daily walker and regular swimmer. My decision in my early 40s to increase my level of exercise and fitness from then on in had paid off. Continuing to smoke perhaps not. If it were ‘easy’ to quit, how many would still smoke?
On January 16th, one day before surgery, I played tennis for two hours – that is how well I felt.
I had met the friendly, supportive anaesthetist who understood my concerns about the looming major surgery and gave me permission to smoke four or five cigarettes the day before the surgery, as, in his view, I would be less stressed than having no cigarettes. He informed me that he had successfully applied this principle to many UK doctors who were smokers and needed major surgery.
The following day, I drove to the hospital alone at 5am, drank lots of apple juice as ordered and am very happy to say that the bilobectomy and removal of 30 lymph nodes (apparently not all surgeons are that diligent) went very well (five hours).
The following day, while still in ICU, my kind surgeon assisted me out of bed and walked slowly with me to ensure that I began to walk as often as possible daily. He did this a few times with me.
Six days post surgery, I drove home alone with strict instructions to walk daily, which I followed very closely.
By the way, some friends had visited me in hospital lest you think I’m a complete loner!
My only issue with the hospital was some confusion initially with regard to the safe-keeping of my personal belongings and the fact that, on my discharge, the bill was substantially higher than the amount agreed pre surgery. Accepting that it could increase by 5-10 per cent but not my 50 per cent, I fought that battle and won some weeks later but it was a stressful discharge.
For six days I had not smoked, but promptly did so as soon as I got into my car. Far from ideal I know, but there you go.
I experienced some pain for the first week only and have been without pain meds since then. The epidural had been so wonderfully effective. I saw my surgeon weekly post-surgery for the change of dressing by him (my very neat scar is now barely visible). So positive and encouraging, this man never used the word ‘remission’.
I was not patronised once, not once by him or by my oncologist.
Five weeks later with my surgeon’s permission, I flew to Europe for the completion of necessary planned major implant dental work which I could also ill afford and most of which is yet to be paid. I am also lucky to have a great and a kind dentist.
In the second week of March 2017, I played tennis in Ireland, one of my main goals. I experienced some extreme exhaustion in those first few months as well as depression, sometimes even questioning the wisdom of having had the surgery.
I can have my moments of being ambivalent about life. Death would have released me from my financial issues, which I still have and from depression, which can be so debilitating.
Prior to purchasing property in Ireland, I had lived by ‘never a borrower nor a lender by’. Some calls with Arc Cancer Support in Ireland, to whom I am also grateful, assured me that I had made the right decision to have the surgery abroad as some lung cancer patients in Ireland, due to hospital overcrowding, were returned home in January 2017 while still having the post-surgery chest drainage tubes inserted and attached to the standard heavy machine.
An important piece – from day one, I informed both my oncologist and my surgeon that I would not have chemotherapy at any time.
I was suffering enough, a sole, soul warrior and I knew that chemotherapy would also not guarantee the non-recurrence of the “ebs”. And it would have cost a small fortune which I did not have. However, the financial aspect was not the main reason for not having chemotherapy. Even when my financial position changes for the better, I shall not ever have chemotherapy. Whilst they naturally gave me all of the advice they could, they also understood and fully accepted my decision.
I was treated with respect and they allowed me to be who I am. I appreciated this very much. I also believed and stated from the moment that I was given the diagnosis that, whilst the automatic response of all is that smoking caused it, that I worked too hard for too many hours from July 2015 until March 2016 in a very negative environment where I made the decision to complete my limited contract in order to ensure that I would receive my end of service gratuity.
I believed that could have caused the “ebs”.
Denial I hear you say. I had also changed my brand reluctantly as it was no longer available where I live – could that have been a cause?
I practised at the clinic for three years. I enjoyed my client work very much, but could not respect my unethical employers
It was a tough decision and maybe the wrong one to complete my contract under very stressful conditions, but I had many clients whom I did not want to leave in the lurch. It takes time where I am living to move from one clinic to another. I could feel the negative work environment in my body intensely for a period of eight months when I sometimes worked 50-hour weeks.
Denial, you may say. I also believed that it was a one-off invasion of my lungs by the “ebs” and they would not return. Pre-surgery, I was very sure that the lymph nodes would be negative and I was right. They were all negative. Tests were carried out on the tumour post surgery to establish if immunotherapy at any stage would be appropriate. It is not.
During last summer, I spent many months indoors as the outdoor temperatures reach 50 degrees Celcius with even higher humidity, fell into a big slump and my fitness level dropped.
I took a case against the insurance company with the UK Financial Ombudsman, which I won four months later. Last November, I received all of the costs for the pre-surgery tests and for the surgery. A battle well fought.
I wrote my Will. It was very important for me to have as much in place as possible. In December, 2017, I invested some of the money into purchasing my own business licence to work for myself and acquire all of the many documents to remain living where I am. At exactly the same time, a recruiter informed me that a major government agency wanted to interview me.
They had received my CV in September 2017. I have been offered that position and am waiting for completion of the necessary security check. It can take many months.
Timing is everything. Hopefully, sooner rather than later, I shall be working fully again and able to start clearing my debts. I turned down several offers throughout the summer as they were from clinics which I believed were unethical.
Since mid-October 2017 as the temperatures became very pleasant again, I have been increasing my fitness levels again with daily 30-minute walks, Aquaspin in the pool three times a week, swimming, occasional tennis, regular table tennis, some weights exercises and I made a big change – I gave up my daily consumption of milk chocolate.Five kgs have left me with another three to go as I lose any excess body fat, tone up and aim for a healthy reshaped body. For most of last year, post op, I had very little appetite and just ate what I fancied as I was rarely hungry. Not ideal but hence the daily milk chocolate. I’m happy to say my appetite has finally improved somewhat again.
Another important piece – in June 2017, I had my first post-op CT chest scan and entered the reality of ‘scanxiety’. How horrible it is to book it and wait for the day to arrive. Fortunately, my surgeon gives me the results on the same day. It was all clear. Success.
And perhaps even more importantly, in mid-January this year, I had my second CT chest scan, one year post surgery.
In mid-January this year, I had my second CT chest scan, one year post surgery
It too was all clear. Success.
What a relief. It is always lovely to see my surgeon again. Of course, the dreaded six-monthly scans remain a must. On calling my oncologist who is very happy for me, he now believes I may well have been right not to have chemotherapy and that I may well have beaten the “ebs” as they usually return in the first year. I continue to believe they were a once off and, of course, only time will tell.
Also significant is my visit to an oncologist while briefly in Ireland in March 2017. I just wanted to chat everything through with an Irish oncologist, which is not meant in any racist manner. However, I ended up seeing a non-Irish oncologist who knew little it seemed about lung cancer, was very patronising, completely lacking in compassion and within about half an hour, spoke to me as if I were 10 years of age – and told me with a big smile to stop smoking and to ‘live well and die well’.
Her nurse with whom I had spoken the previous day, had told me about a test which I had not had abroad. Naturally, believing this to be important, I enquired about it when visiting the oncologist. ‘Oh no, it’s for breast cancer’ was the response. No apology offered.
I had sent all of my medical reports to the nurse before visiting the oncologist. I did not have breast cancer and there was no mention of breast cancer. The nurse, also patronising, commented that my reports were very thorough. This oncologist charges €200 per session which I negotiated down to €150.
I complained about the oncologist and received mere defence and no apology from the CEO, of course. Fear of litigation rang loud and clear in his emails to me which seemed to emphasise ‘remission’. My visit to the oncologist was a complete waste of my precious time and money and her nasty words continue to run through my mind.
Am I still smoking you may ask? Yes, I am.
Fewer cigarettes and one day, very soon, I hope and believe they’ll leave my life. How you judge me (if you choose to judge me, as so many seem to) is entirely your choice. I ask, though, who are you to judge me or anybody else? Lest you wonder if I drink any alcohol, until my early 40s yes. I enjoyed it and have memories of many fun times drinking with friends and late nights. Since then, very, very rarely and not a drop since I got the diagnosis from hell. Nor since I got the great news the other day.
One of the days in the future, I might have a glass of wine or bubbly but it rarely even crosses my mind. I pretty much gave it up many decades ago. It just kind of left my life. The daughter of a depressed alcoholic father who died suddenly in the late 90s having been very successful in a very well-known drinks company for many, many decades, from my early 40s, I was on a mission to ensure that I wouldn’t go down that hellish road. The sudden death of my father was very devastating and sad for all of us.
But I digress. Maybe they’re stories for another time.
A smoker, though, my late father had been my main parent when I was growing up and he wasn’t drinking as much as in his later years. In her 40s, as my late mother was diagnosed with generalised anxiety disorder and depression, she engaged in very little parenting.
Her own upbringing had been very authoritative and she did not want to pass that on to me. A kind woman, she had a lot of suffering herself at a time when psychological support was not available. Of course, there were nevertheless some very good and happy times. I wanted to follow my late parents only in their intelligence, their kindness, respect for others and their integrity. Unfortunately, the smoking stayed with me too.
As I reflect upon my many former lives, it becomes so clear to me again how I became a survivor and a sole soul warrior.
Neither of my parents, whom I loved dearly, died of cancer and maybe I won’t either. Here’s hoping.
Why do I need to write all of this?
To explain how the invasion of the “ebs” took the wheels off my life, to let it go, to be of help to others, to encourage people to ensure they find the best, most compassionate oncologists and surgeons and to be assertive, to talk about this illness which hits so many, which bombards you with facts and figures and statistics and can leave you reeling.
To give others hope. To explain what helped me. Somewhere in all of the experience, I practised mindfulness. I managed to detach in some ways and to keep going doing my best every day. To express gratitude to my friends who helped me in so many ways. Emotionally and philosophically, it’s such a rollercoaster. Particularly the days before and after the CT scans. The ‘scanxiety’ days.
After I got my great news on January 15th, 2017, for a few days, I was tearful on and off, grateful, relieved, happy, exhausted and sad – and sad for others who get awful scan results and are often so much younger than I am. Grateful for the courage I have – it is needed. So much seems to be known and still so little is known about the “ebs” – I believe they invade so many for so very many different reasons. And I suspect food is part of it. The attitude of the medics to the patients is so hugely important. Everybody is so much more than a cancer diagnosis and never needs to be patronised or admonished.
Compassion is needed. Oncologists and surgeons see so many patients daily. I believe some may lose some of their awareness of how horrendous the diagnosis for the patients can be. These medics also need support and I hope they speak to mentors or psychologists in this regard. I imagine this is often lacking as busyness takes over.
Prior to the “ebs” diagnosis, I had been healthy
Bronchitis had been my sole illness throughout my life. A D&C gynaecological procedure in my 20s and two broken bones in my 50s were my only previous encounters with medics. And huge amounts of dental work throughout my life about which I was always 100 per cent calm. They just cost a fortune.
But lung cancer and major surgery? That was a bombshell.
As an atheist, prayer wasn’t going to help me in my mind.
Has it changed me? I feel I can cope with anything so I guess I feel even ‘stronger’ than before (whatever than means) and more courageous. I know even more than before that everything is impermanent and I do my best to appreciate my time daily while alive on planet earth. I still face many challenges (who doesn’t?), but, for now, I’m happy to say I’m free of the “ebs”.
I accompanied a dear friend in Austria, a psychologist, through her battle with a very nasty sarcoma from 2011 until 2013, which she sadly lost in her 50s. All the chemotherapy in the world couldn’t save her. I hope to last a whole lot longer. I just took antibiotics once for one week in 2017 when I got chilled in October. No bronchitis I’m happy to report.
I have yet to start working full time again. I need to earn my rent due at the end of this month, pay my debts, regain my financial independence and practise my profession again. I feel well and continue to benefit from healthy eating and lots of exercise (including daily table tennis on the beach) and glorious daily sunshine and sea. I need to get the wheels back on my life in as many ways as possible. The only other curved balls late last year were the interrogation for no apparent reason by an Irish bank of my accounts, which I have had for many years.
On principle, I refused to respond (I am non-resident in Ireland). My accounts were closed by them, which is an inconvenience, but it’s not the “ebs” and as I refused to be bullied, bulldozed or knocked out by them, I shall also not be bullied, bulldozed or knocked out by Irish banksters. I reported the interrogation and closure to John McGuinness of the PAC.
I know many others fight the same “ebs” fight which I have survived to date and are not as lucky as I have been so far. Some are and some are not and, in my view, nobody knows why.
I am happy to say that I now no longer regret that I had the bilobectomy.
It is possible to run a marathon having just one lung
I have no plans, but I guess you could say you never know!
As you can gather, my memories of every moment of the invasion of the “ebs” are very intense and clear. I imagine this is normal and many others go through the same. I very rarely speak about it these days and I’m happy to say there are days when it doesn’t cross my mind.
There is a stigma attached to lung “ebs”, which is hugely underfunded compared with other “ebs”. I always smoked with a very positive attitude, which may sound stupid and odd but so it was. Of course, now the question is always posed, ‘did you or do you smoke and if so, how many’?
The December 2017 Fortune article entitled ‘Lung cancer causes 32% of all cancer deaths. Why does it get 10% of research funding’ is worth reading as it provides many facts and figures.
For many reasons, I have written this anonymously. I hope you understand why.
Kindness is priceless. I wish you all well.
To thine own self be true.
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Damian Cullen (Health & Family Editor)
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