I was diagnosed with locally advanced lung cancer just over two years ago. The following is something I wrote in the week after my diagnosis. It describes my experience and is very raw and very real…
Friday
Friday morning, I had an annoying cough. By Friday evening I was recovering from a biopsy procedure on a large tumour on my right lung.
My appointment was at 10.20 Blackheath hospital. I arrived early and walked around the parade of shops. It felt like it might rain and the air was very close.
This was a follow up to a consultation I had had on Wednesday with Dr C. A lovely doctor, I am guessing she is eastern European but she may well be Spanish, I don’t know. I will find out.
I was referred to a consultant by an internet doctor the week before and had found Dr C. purely by accident. Originally my appointment had been made for the following Saturday but my cough had worsened and I was feeling short of breath, so I arranged an earlier consultation with Dr C. for the Wednesday.
Looking back at that first consultation the warning signs were there. She seemed concerned about the glands on my neck. She was also very insistent that I go for a CT scan of my chest that evening before the radiology department closed. At the time I took this insistence to be her general manner, which I think it is.
She was not supposed to be working at Blackheath that day but had over run from the day before so had to fit in three patients that afternoon, or so she thought. Unknown to her, and the nurse that gave her the list for that day, there were another three patients waiting in the corridor. She spent an hour talking with what she thought was her last patient, “…having a lovely talk…yes…nobody told me there were people waiting”.
As I sat outside the consulting rooms that day, I felt rough had a headache and felt a fraud. There were people here with real problems and all I had was a cough. Two of three GPs I had seen previously told me I had a cold and the cough would clear up. I was wasting everyone’s time.
There was a couple with small child and the father on crutches. I hope their child is ok. Another couple looked a bit grumpy.
I sat on the chair in the corridor that Wednesday felling a bit rough. The wait was at least an hour. There is only so many times you can check the BBC news app on your phone, plus I did not have my glasses. I checked Arseblog a key game for Arsenal against Southampton was coming up. This was important.
The corridor was hot. There was an old grille in the wall that had been painted over. It annoyed me, but was all there was to look at.
Dr C. saw the couple with the child and then the couple who were grumpy on their phones, probably how I looked.
I moved to sit outside her room were the grumpy couple had been after they went in. I had an inkling that Dr C. had only acknowledged two extra patients and not me as I had been sat around the corner in the corridor.
I was right…
“…you are not for me?” she asked in manner that seemed she got the impression I was, sat outside her room, but hopeful I wasn’t.
“Yes I am” I was assertive about this, I had waited an hour while she had had a lovely chat with a patient. I was cross, little did I know how much I would need her over the coming week.
My appointment was probably making her late for her next duties, but she clearly did not allow this to have an impact on the thoroughness of her approach or her overall demeanour. This was someone who genuinely cares about people. I was going to say patients but I think people would be a word that more accurately describes how she has come across.
I explained about my cough.
“…yes…we like to find out the problem and solve it…like the Sherlock Holmes”. This was a person who solved problems and made people well. At last someone took my little cough seriously.
Heart rate a bit high, oxygenation ok. “…blow into this, as hard as you can…yes I know it is difficult with your cough…how old are you…45”
“46 I am 46”
“Yes I know that but the chart has only 45 and 50…lets use the 45 figures…a bit low on both…this is only one figure…try again…give a really big hard blow…”
“…the cough gets in the way… I am sure I can blow harder”
“…ok…these results are lower, let’s use the first results shall we” she did not seem too concerned at this point. It was only earlier when she had felt my neck that I had sensed any concern.
“Do you exercise?”
“er…i used to go to the gym but not much now”
“Ok no exercise”
“I walk at least 10000 steps everyday, so it is not like I don’t do anything.” A sore point for me. I had got myself fit going to the gym at least 2 times a week but let this go when I had a slipped disk a year or two ago. I kept trying to get back but didn’t really manage it for whatever reason. I did walk a fair bit though.
“Ok so you are fit” this was a declaration, a now established fact that could be said with an assertion that Dr C. clearly has. I cannot guess whether this is cultural, just who she is or whether it has been learned over years of experience. It didn’t matter, this was someone you had confidence in. No bullshit, this is how it is.
“Ok I am going to send you for a chest CT scan this afternoon and take some blood tests and you will see me again on Friday. Contact Nicola telling her what time you can make and she will organise it from there. You must go straight away to the radiology department in the large hospital across the road, but you must be quick as it closes at 5. You can then come back here to get the blood test this closes at 8 tonight so plenty of time…do not delay straight to radiology…yes I will phone them and let them know you are coming”
With that I was on my way over the road. I had discussed insurance and she said you can organise that on the phone when you get there.
I got to radiology worrying about time and insurance approvals. The fellow running the machine was expecting me. Gave me a form told me not to worry, it only takes 5 minutes, when I apologised for turning up at the last minute.
He was a calm London lad similar age, had the air of being unflappable.
Insurance sorted, always painful, I lay on the bed as he arranged my head to get the best view of my neck. He said something about a practice run before the real thing. The machine talks to you telling you to breath in hard and hold the breath. This was not easy without coughing.
“sorry mate…the machine is playing up a bit…won’t be long.”
“Ok…all done…er when is your follow up”
“Friday”
Do they see the scans as they happen? Was it obvious to him then that my problem was very serious? I don’t know? Imagine seeing the scan with a massive tumour on the lung and having to remain normal, give no indication. I nearly asked how it looked, I am used to passing most things with flying colours, why should this be different?
I am glad I didn’t ask. He would not have told me and it would not have been fair on him. I apologised again for making him late (I had heard him on the phone to someone saying he would be a bit late) as I felt bad. He was unflappable, it was not a problem.
Back for blood tests and more time sat in the corridor. The nurse took my samples and we talked about my weekend away in Barcelona a couple of days ago. My little brothers stag do. Stag do doesn’t really sound right but you can’t really call it a stag night, perhaps stag weekend would be better. She asked about running with bulls, which I don’t think they do in Barcelona she was getting confused with somewhere else, I didn’t try to correct her as the conversation was pleasant as she took the blood from my arm.
I left the hospital feeling positive that I was on the path to finding out what was the cause of my cough and then a cure. It was getting a bit late and I had a headache otherwise I would have gone for a sneaky glass of wine or beer in Blackheath.
I got home and slept as I felt rough. I let work know that I would be off until the end of the week.
Thursday, I did not feel great but my headache was not as bad as the day before. Anadin Extra helped to ease it.
I had intended to do some work at home but felt rough and anxious. Although everything seemed positive from the appointment the day before there was something nagging at the back of my mind, I kept it at bay by watching films. First off Dog Day Afternoon or at least the last two thirds of it. Then Vanilla Sky one of Tom Cruise best films and amazing performances by Cameron Diaz and Penelope Cruz. “She is perhaps the saddest woman ever to hold a martini” a line of pure genius.
Then Serenity a rubbish film that I slept most of the way through. It had four stars by was two dimensional and badly acted.
I didn’t feel well enough to go to the pub quiz that night, so I took the plunge and watched the extended version of The Return of the King. Over fours hours long. A masterpiece. My brother had read the Lord of the Rings to me when I was a kid, a very fond memory.
Just to pause in my description to say how easy this has been to write until that fond memory. At this point a wave of emotion courses through the logical mind crashing it into a million sharp pieces all of which land in your eyes. And the tears well, then fall. I cannot control this yet, but it is early days.
Halfway through the film I got a phone call from a private number. I don’t usually answer them as I haven’t been injured in a car accident and don’t want PPI. On this occasion I did answer it.
I did not say anything waiting for it to automatically hang up or ask me about a car accident.
“hello”
“hello”
“this is the radiology department at Blackheath hospital we have been asked to contact you to arrange a further CT scan of your abdomen and pelvis for tomorrow”
My heart leapt into my mouth. Radiology…further scan…?
I took the details agreed a time, no food or drink 6 hours before. Thank you.
What did this mean? Either they had found something or they had found nothing and needed another scan to check the next probable cause, this is what Sherlock Holmes would do.
At first, I thought the worst but then had a bit of a word with myself. It would be like the other times at the doctors, sorry we can’t find anything wrong with you, you must be making it up. The difference this time was that it was private, the more they do the more they make paid for by insurance. I decided not to tell anyone.
The insurance company had questioned the scan as it would have been a second large dose of radiation in a short period of time.
The appointment was at 12.30 with my follow up consultation at 10.20. I set my alarm for 6am so I could at least have drink and maybe breakfast before the six hour deadline. As it turned out I just had a small glass of water that morning.
I can’t remember the weather I think it had been raining but it was also warm and a bit muggy. I stayed in bed until around 9am then got up and showered. I walked to the bus stop and caught the 202 to Blackheath. By now I wasn’t expecting the worst, in fact I was looking forward to them fixing my cough.
Dr C. was in a different room this time. I was able to sit right outside the door. This was the same place I had sat a couple of days earlier. I remember that grille.
There was one patient before me.
They didn’t take long; I would be out of there soon having a slap up lunch in one of the restaurants. A fillet steak at Cote perhaps with a large glass of Malbec.
Dr C. recognised me immediately and ushered me into the room.
“I have a trainee with me today it is up to you of you want them to stay or if you want them to go?”
“it is no problem to me I am happy for them to stay”
The trainee was a young lady with dark hair and brown eyes. She looked more like a nurse in a light brown uniform and did not have the air of somebody who was completely comfortable with the whole process.
There were two large blue chairs sat at an angle to the doctors desk which had a computer screen keyboard and mouse on it. There was some discussion about which chair I should sit in. Dr C. wanted me in the one closest to the desk. I sat in the chair and it felt quiet low. The trainee was sat across from me in another chair, again at an angle to the desk.
“I am afraid I have some bad news for you Mr Trent.” She went straight in with this and it is at this point where the world changes into a dream. You are there and perfectly able to function but things are ever so slightly slower than real time, you become hyper aware. The awareness is such that you actually become aware of yourself as a sentient being in the room. Normally you are not aware of yourself as you are the centre of this particular universe and you are in the ‘command and control’ seat.
“…the scans show that you have a large tumour on you right lung…” doesn’t seem real, go along with it.
“ok”
“I will show you the scan on the computer”
As Dr C. tried to login to her computer, I became aware that she was also very upset by this news. So much so that she was not actually able to get past the login screen.
“I hate having to give bad news…I only have to do it maybe twice a year…I try to avoid taking these cases because it is so upsetting.”
The doctor was very honest and very human. Her being upset helped in many ways as it kept me from showing any emotion as I did not want to upset her further.
She went on to explain that she had seen the scan the day before and immediately had understood how serious it was. She said she had not let me know as it was news that was best delivered in person with the follow up meeting today it was best to wait. She had however already arranged for me to have a biopsy to be undertaken that evening at London Bridge Hospital with Professor G. She had also arranged for a PET scan to understand if the tumour had spread. I don’t think she used the word cancer during this session. All I had to do was to email her administrator with confirmation that I had approval from the insurance company and it would be all arranged.
She looked at me directly “this is not the time for crying…” I wasn’t “…this is the time for action…to have a plan…there was a plan and this is what I needed to do”.
She insisted that I see the scans and after a phone call to her IT Support and with the assistance of the trainee she was finally able to get the scans onto the screen.
By now the third person that was me was in logical mode, there was a plan, I just needed to understand the plan. Perhaps I could write it down. The words were going into my ears being processed by my brain, I fully understood, the ‘command and control’ station was in melt down, what is she saying, this can’t be right, no this doesn’t happen to me. In the mean time the logical part of my brain was shouting “FFS shut up I am trying to understand the bloody plan, a biopsy, London bridge hospital, we know how to get there, been there before. Shut up everyone I trying to understand the plan…”
“I had a call from radiography last night making an appointment for another CT scan of my pelvis, it is due at 12.30 today, do I still need to do this?”
“Who called you? With what, oh my god I told them not to contact you. No, you do not need another CT scan. The PET scan is much better. They should not have contacted you.
Now I am going to arrange for you to go to another room to contact your insurance company in private.”
She made the call and got a free room. She instructed the trainee to take me to the room and to get me a cup of tea. I was now on autopilot. ‘Command and control’ had shut down. The tea was welcome and the room quite difficult to find. She had put some sugar in the tea, it was in a blue paper Tchibo cup. This is perhaps the most welcome cup of tea I can remember in my life. I sat in the room alone.
There was a clock on the wall ticking. Every second had weight. I looked at it for around 3 seconds. In those three seconds was a life time.
I cried for the first time. Brief moments of no control then gain control and tears. Then the nose runs and needs to be blown. There was a box of tissues on a pile of papers on the desk I must have used half the box. The used tissues went into an empty bin, so empty that the transparent bin liners hadn’t been fully extended and all my snotty tissues sat at the top. I made a half hearted attempt to push them down and failed.
I composed myself, rallied those traitors in ‘command and control’ and dialled the number. It was really difficult trying to explain to the claims assessor what was happening when I wasn’t really sure myself. They put me through to a nurse for approval.
I had to go through it again. The nurse clearly understood how serious this was and gave me the approval number. I wrote it down wrong.
The trainee had said she would go over to the pathology department and pick up the cd of the scan and cancel the second scan. I sat in the room looking out at the Thames a fantastic view.
At this point I wasn’t sure whether the trainee was coming back to get me or not. I sat in the room for what felt like hours but was probably only 15 minutes. Two people came into the room looking for a patient that they had lost and I had to explain why I was in the room on my own.
At this point I went back down to the corridor. I waited here anxious.
Eventually another nurse helped me, taking me down to the pathology section in the same building. I was out, but first I had to give back the pen I had taken from the room.
Out in the sunshine and I was in a dream. Everything real but time was not working in the way that it should. Everything happening at different speeds….
The New Normal 