Sea gooseberries on the beach, jellyfish in UK seas

This is a very short no frills post about how I feel right now.

I had chemotherapy this week.

It feels like someone turned up gravity. Everything is heavier, everything is more difficult.

My brain has been squashed and feels like it is only maintaining the minimum of cognitive function.

I feel stripped bare. Like a beach when the sea has gone out and all that is left is desolate wet sand and debris.

But like the beach I know that the sea will return with all the vigour and life that comes with it. This is why it is worth it!

“…strong, powerful and I can beat this thing…”

A few months ago I chose to write an essay about my experience with “…the fight against cancer…”. Since then I have tied myself in knots trying to express the contradictions that have haunted each and every draft, even the one you are reading now.

The subject matter was inspired by a series of lectures that I attended after finishing my initial treatment. One session touched on other peoples perception of cancer. During an open dicussion the subject of ‘fighting’ cancer was raised. It stirred some very strong emotions from the audience, the speaker and me.

Everything that was said made perfect sense; If it is framed as a fight and you aren’t winning then it can give the impression that you did not fight hard enough or you did something wrong…you could be made to feel that somehow it was your fault that you did not beat cancer…to be made to feel that you lost the fight. To lay this on anyone who is suffering from cancer just adds to an already overloaded burden. We all agreed that that to describe our situation in this way was wrong…it is not a fight.

And yet…as I explore my own experience of cancer treatment, spanning the last two years, there has been a constant battle or fight. At first I thought I was fighting cancer but it is only now as I have sat for many long hours…thinking…agonising…and contradicting myself…that I conclude the battle, the fight, is not against cancer but against myself.

Let me try to explain…

At first there was despair. Immediately after diagnosis I needed something to pull me out out of the despair and prepare me for the terrifying thought of treatment. A major part of this was exactly the rhetoric that we all railed against at the previously mentioned lecture. I needed the fight and I needed to feel that I was fighting a monster. For me, at this stage, the ‘Werewolf’ was real and I needed it to be real in order to ‘steel’ me for what was about to come.

Part of my coping mechanism was to approach my treatment in the way that I would approach a complex project at work. I gave the project a name ‘Project Beowulf’ after the Norse hero of the poem. I had my own Grendel to defeat. I had spent my whole life believing I was indestructible, so Beowulf seemed to fit bill perfectly (more about chosing the project name and how that panned out below!).

I was going to beat cancer…I was up for the fight.

At day one I was mainly ignorant of cancer and the treatment. I was scared and preparing for the ‘death sentance’ that I thought I had been given. I needed the fight, without it I would sink in my own self pity.

My mantra was “I am strong, I am powerful and I can beat this thing”. This was my ‘battle call’.

The mantra motivated me when I needed it the most. In some ways I needed to feel like there was something to fight to bristle that bit of determination. I imagined the chemotheapy attacking the tumour, killing the cancer a cell at a time. I imagined the cancer in the lymph nodes withering as the radiation burned it. Make no mistake this was a fight and one that I was emotionally involved in. But in reality it was the treatment that was fighting the cancer, not me. If it didn’t work it was because the cancer was too far advanced for the drugs or radiation…if it didn’t work it wasn’t my fault…I had done everything I could to help the treatment by eating well, exercising and by keeping positive.

I needed this strength for myself and the people around me. It wasn’t ‘a front’ it was armour plating.

A couple of chemo cycles in and I started to question what it was that I was fighting. By this time I had settled my family, friends and work with the Project Beowulf approach. I had a standard ‘patter’, a series of standard responses, that rolled off the tongue, well rehersed.

How I feel now and and how I felt when I was diagnosed are worlds apart and that is perhaps why this has been such a difficult essay.

Sat in a cafe in Blackheath with eggs on toast in front of me and the rain pouring down outside I have had a moment of clarity. I needed to be wrong in those early days to get me through them, and it is ok. I guess it is time to accept this contradiction, rather than try to resolve it. I am not infallible…in just the same way that I found out that I was not indestructible.

I have since learned a personal truth; I cannot beat cancer, all I can do is everything I can to ensure it doesn’t beat me. This is not a war or a battle, there is no evil creature or monster to slay, just an error. An error in my DNA that is causing my own cells to replicate themselves erroneously. The cancer is mine…it is part of me…as I said no evil third party is involved.

There is a battle, there is a fight but not against cancer…it is against myself. Against allowing myself to slip into despair, against the need to blame someone or thing, against the hope of being cured and the fear of its resurgence. Against thinking that the world revolves around my condition…it doesn’t.

The ‘fight’ against cancer was important to me but only at first. It stopped me from drowning. The reality is that after this it was more important for the people around me. They felt helpless, and needed hope as much as I did, the fight was something that they could relate to. Something that I could give them to hang onto. People even now still say “how brave” I have been in my “fight” against cancer. I smile and thank them, in full knowledge that brave is when you voluntarily venture into danger, there is nothing voluntary about cancer.


A quick note on naming a project.
I named my treatment ‘Project Beowulf’ as I could visualise myself as the hero fighting the tumour in my lung (Grendel) and the cancer in my lymph nodes (Grendel’s mother). This seemed perfect. However, when I actually read the poem I was alarmed to find out that years after this heroic feat Beowulf was killed by a dragon after almost all of his trusted warriors had abandoned him. Not quiet the end I was hoping for but also, as is often the case, poetically not an impossible end to my own story!

Silver bullets…

The problem isn’t a lack of silver bullets…the problem is we are not fighting werewolves!

When I was diagnosed, I was told that there were three things that I could control.

1. My physical exercise,
2. My diet, and
3. My state of mind

The rest, I was told, was down to the doctors.

All three of these points are easy to write down in a list. Also, with a little effort and some reading they are easy to talk about, seemingly from an assured position of knowledge.

However, actually doing all three, or even any one, was more difficult than I imagined. I am sure that if you already had control of these three things in your life or if you are some kind of amazing machine it would be relatively easy, in which case you have my respect. For us mortals it just isn’t that easy.

Before I was diagnosed, I went to the gym on an ad hoc basis, I ate rubbish food and drank too much alcohol, although I would never have admitted it. My attitude was simple…I am indestructible…I had never really been ill and cancer was a word that you didn’t even say.

I didn’t need a three-step philosophy.

And now these three steps are the cornerstones of my life. And don’t be fooled into thinking that I am fabulously successful in any one of these areas, just a bit better than I was. And that is the point, you don’t have to radically change your world you just have to keep making small adjustments.

Starting with physical exercise. I have retained my gym membership over the last two years and never once been to the gym. A common story I know and my reasons for not giving up the membership are also pretty common. I intend to go…when?…who knows?…but if I give up my membership I lose the opportunity…I lose the dream of going. Whilst I can dress this up any way I like, not going to the gym for me has nothing to do with cancer! If I wanted to, I could devise a workout that would be safe and I could find the time.

However, my exercise box is ticked by walking on a regular basis. My target is to walk an average of 10,000 steps per day. To start with this was a daily target but it soon became self-defeating as it is impossible to walk 10,000 steps on a day when you have been on an IV drip for seven hours whilst also fitting in a dose of radiotherapy! So rather than beat myself up I changed it, to something that worked for me. My phone averages my step count over a month and therefore my target is now to walk an average of 10,000 steps a day, over the period of a month. Good days I walk more and bad days I walk less. Most months I achieve my goal and some I don’t, and that’s ok. The important thing is I have a goal. A goal that drags me out of bed on a Saturday morning to walk to Blackheath and eat eggs on toast, drink cappuccino and listen to a book or music on the way.

The Saturday morning ritual ticks all three boxes and I look forward to it. During the week I walk to the station as part of my daily commute and when I can I walk between meetings in London.

My target works for me, because for the most part it is embedded into what I do anyway. I picked something that I knew I could achieve the majority of the time, made it a ritual and threw in some treats to keep it fresh.

Walking between meetings in London is great and can be an eye opener. Firstly, you avoid the underground! Secondly, when I walk, I take different routes and discover all kinds of strange things around the old streets of London. The other day I discovered The Old Curiosity Shop in Lincolns Inn. It made me happy…two boxes ticked!

Then there is diet. I started this essay with my reference to silver bullets and if the books and internet are to be believed then silver bullets, in the form of diets, are abundant. I am sure that the majority of them are fantastic and some can even have an impact on cancer. But cancer is not a werewolf. It is almost infinitely variable and complex…

If believing in a miracle cure works for you and you can maintain the change then great… it didn’t work for me. I read the books and brought the ingredients but could not sustain it. The end result was that I beat myself up about it… if only I was stronger willed…better organized…like the people from the book or the web site…perhaps then…NO STOP.

You can’t eat the elephant all at once…you have to take it a bite at a time.

(Just for clarity I do not advocate eating, or for that matter any harm, to elephants they are majestic creatures and probably a bit tough!)

So I took bits from each of the wonder diets that I had read. I took the bits that I liked, that were easy to implement. This way there was no regime to follow, no expectation of a wonder cure, no unpleasant smoothies. Just food that I liked and made me happy, two boxes ticked.

The change has had a more surprising impact on me. When I go to a restaurant these days I am as happy ordering a superfood salad as a fillet steak. For the first time in my life I no longer choose the default ‘favourite’ meal. Now, I give myself a choice. I was not adventurous with food and would have stuck to the default ‘favourite’ meals until I was ninety!

Circumstance helped me to make this change. Radiotherapy had damaged my oesophagus making some foods difficult to eat. I was forced to pick food that was easy to swallow. At first when faced with a superfood salad I was…it’s only for a bit…oh that was really refreshing…and quite tasty…I will have that again…

I love eating salad…there I have gone and said it. Not for every meal but on a regular basis. This change did not come about because I read a book or web page, it was not down to the wise words of a guru. It was part luck and part necessity. It happened slowly and with no pressure. The organic changes that have happened in my life happened for various reasons but I have been able to sustain the changes because they matched at least one of my three goals.

The last of the three is my attitude. This is an essay of its own (to follow) but simply put; I started to recognise and enjoy the small things, that make me happy, but that I had somehow taken for granted in the day to day journey of life. For instance, on my walk to Blackheath I pass beneath some cherry trees. The blossom in spring is beautiful. It makes me happy…if I allow it to…the strange thing is I had to give myself permission to recognise and enjoy this strange fleeting moment of happiness…it is as though I had to look at the world as though I were three years old again…

It steals your future…

Two years ago when I was diagnosed with locally advanced lung cancer the feeling of despair was overwhelming. One aspect of that despair was the belief that my future had been stolen. I tried to write an essay on it at the time but it was impossible. Two years on this is my first serious attempt at describing the feeling.

I was initially told “…you will never go back to work”..(I did by the way). And that I should get my affairs in order.

No one actually tells you how long you have to live at that stage because they just don’t know. However, it didn’t take me long to find the statistics on Google that showed there was a 5% chance of being alive in 5 years. I know these are quite old stats and cannot be applied to an individual but it is very difficult to be objective…at least at first anyway.

At 47 even with a fair wind that makes living to 52 very good going! Strange that prior to diagnosis I was not really looking forward to being 50 but now it is a massive milestone in my life.

I could not get out of my head all the things that I would never do:

I would never grow old…
I would never walk my daughter down the aisle…
I would never be a grandad…
I would never retire (a bit of a relief as my pension is rubbish…every cloud!)…
I would never…
I would never…

This is despair of the like that I had never experienced before. It was actually worse than the thought of dying (more on that in another essay).

It is like I was grieving for myself, for the loss of my own future.

It does not go away. Writing this in a coffee shop in Blackheath two years later my eyes still well as I type the ‘I would nevers…’.

But it does become less prominent, to the point where you only think about it in your occasional, lowest moments, when your guard is down.


The answer is simple. It does not get easier, you do not get used to the concept or accept it.

The reality is that other things get in the way. Bit by bit they cover the wound until, for the most part, you don’t realise it is there.

I guess this is what they mean when they say that time heals. It doesn’t… it just puts a whole load of other stuff in your way, slowly covering the wound.

You also get bored of the same thoughts. And this happens very slowly and without you really noticing it. You can’t just make yourself get bored of it, it doesn’t work like that. It just happens.

And if you are an analytical person like me you start to find the space to be objective (some initial therapy really helped with this and if you get the opportunity I would recommend it).

Logically you have to ask yourself is there any point wasting effort grieving for something that has not yet, and may never have, happened? You cannot lose something that you never had. All you lost was the vague promise of having it in the perfect world that you had planned out in your head.

Ask yourself how did all the perfect world thoughts you had 30 years ago go? Not to plan? Not how you expected? Then why now do you believe that the perfect world you have planned out for next 30 years is any more likely to go to plan?

And now?

I live with the sword of Damocles hanging over me. A horses hair keeps the sword from falling down to secure my fate…a bit over dramatic and historically incorrect, but hey I am indulging myself!

Living with the impending threat of the cancer once more proliferating is now a greater day to day concern.

Logically I should therefore focus on the things that are real, that are happening now. Things that have a direct impact on me and the things I care about. My family.

And I have been partially successful with this but also the normal stuff like work and paying the bills becomes important again. It had been suggested to me that these things would become more trivial after holding hands with Thanatos. And maybe it did for a bit until the stark realisation that the realities of life had not gone away.

The ‘old normal’ so to speak!

It is too easy to forget how lucky I am to be alive and generally well, for however long this reprieve continues.

My monthly cycle (maintenance chemotherapy)…

I am on a four week cycle of Chemotherapy (Pemetrexed) as a maintenance treatment, and have been since I completed my initial treatment in October 2017.

Every four weeks I have the same treatment and the effects are broadly the same, but always slightly different.

What really frustrates me is how little useful information there is about how the treatment should or could make me feel during the cycle. I believe that the normal cycle for this treatment is 3 weeks but I came to the agreement with my oncologist that a four week cycle meant a significantly improved quality of life. This is important and you can’t stop yourself from doing the mental assessment of quality of life against extension of life from the treatment. If you are in this position you will understand this if you don’t then I will write another short essay on it shortly.

I can find hundreds of websites with the same information on. The completely useless list of side effects. They have tried to improve it with the list being split into those that are most likely and those that are least likely. But they are useless and pointless lists of stuff and no help to the long term patient.

Here is my experience of the 3-4 week cycle and this is the sort of useful information that the drug companies should be providing. Scenario based explanations that cover the majority of impacts (not just side effects) that people will feel when having the treatment.



Day -1 : Tuesday – Steroids (Dexamethasone)

The steroids make me feel a bit hyperactive. It is good for getting things done but my brain seems to engage slightly behind mouth. This can be a bit risky at work, especially in large meetings.

The main effect that I feel is that I find it difficult to sleep at night and I get a bit of heartburn at night. The advice that I have had and followed is to have all the steroids in the morning. It helps a bit.

Also don’t eat late and eat things that are easy to digest.

Day 0: Wednesday – Treatment day

Depending on how well I sleep there is a strange mix of the high from the steroids and tiredness from lack of sleep. The two can cancel themselves.

I have the treatment at 12 noon. I eat well afterwards and go home feeling a strange. I usually sleep for an hour or two in the afternoon as tiredness sets in.

Day 1: Thursday – Day after treatment

I go to work usually having slept very badly suffering from heartburn. This is the day where tiredness and steroids cancel each other out. It is strange almost spaced out kind of feeling.

The heartburn will have started to have an impact on my oesophagus and throat as the acid finds its way up to where it shouldn’t. I use Gaviscon to try and reduce the effects and it is not bad. I have tried a proton pump inhibitor such as Lansoprazole but when I was on it long term it made me feel unwell and to use it on and off once every four weeks sends my digestive system into a ‘bit of a spin’, causing excruciating wind for at least a week afterwards.

I get through my day at work and go home.

Day 2: Friday – The steroids start to wear off

This is a difficult day as the effects of the chemotherapy start to hit me around mid afternoon.

My assumption here is that the steroids trick the body into not reacting to the fact that it has been drugged . The drug carries on working. As the steroids wear off the body does everything it can to get rid of the drug. This manifests itself as follows:

  • Very strong smelling urine which is always a dark yellow colour.
  • A kind of constipation that causes the stools to harden.
  • Excessive saliva that comes with a horrible taste in the mouth. This makes me feel a bit nauseous.
  • The inability to think straight.
  • A dull background headache that stays with you even when asleep.

In short it is like the onset of that first ever hangover that you experience as a teenager.

Day 3 & 4 ; The weekend after

This is when it really hits.

I force myself to go out and walk five miles each morning, stopping for breakfast at a nice café in Blackheath. I feel this is important as, if I am correct, doing this will help to get the blood (and lymph) moving, hopefully helping the body to get rid of the drug.

By now the symptoms listed above are at their worst. My urine smells horrible to the point where I can’t bear it myself. The hangover feeling is complete, there is no getting comfortable. Occasionally, the excessive saliva and taste in the mouth make me sick, but not always. This really is the hangover from hell.

It is bearable, and I have to keep telling myself that

  1. It is not as bad as the initial treatment that I had (Cisplatin, Pemetrexed and radiotherapy).
  2. It will only last for a few more days.
  3. It is nothing compared to what some poor people have to endure.

Easy to say, and write here, but when you are feeling this way you have to make yourself remember this and convince yourself.

By the end of Sunday I also find that I am at an emotional low. Anything can set me off and it is quite hard to hide or stop. It can be anything, it is ok.

Day 5: Monday – Working at home day

The Monday I still feel rough and I have a block booking to work at home that day. I don’t get a full days work done but I do get something done.

The hangover feeling usually clears during the day but it can be replaced by a headache and sometimes a bit of a temperature (paracetamol to counteract it).

My assumption is that the hangover feelings are as a result of the body trying to get rid of the poison. This changes as the drug actually starts to take effect and the cells in the body, that should be renewing themselves, don’t.

This is where it switches from being a physical thing to more of a mental / emotional thing. You have to drag yourself out of it, there is no other choice. But there is the voice in your head that says “Why bother dragging yourself through this again when you are only going to have to go through it in four weeks time, that’s not long you know. And then in another four weeks and another. What is the point, it just goes no forever!”.

You have to ignore it. You have to get yourself out of yourself, I walk when I can to help over come this. You have to tell yourself “In a couple of days I will feel better”. At the end of the day you don’t have a choice but that does not help.

Day 6, 7 & 8: Tuesday, to Thursday – Working through it

Back to work. Not feeling the best but back at work. Tiredness is the biggest problem and still pulling yourself out of the emotional down.

When it is gone you feel great.

Week 3: Hay fever?

Around week three I get hay fever type symptoms. My eyes water continuously especially when outside. I feel like I have a cold but without most of the cold symptoms, I guess this is what hay fever is like?

My assumption is that after about two weeks the drug effects are gone and the body starts to try and get itself back to normal. This has to have an impact and for me the impact is like hay fever?

Is this normal, I don’t know.

Are any of these reactions normal, I don’t know? And that is the point, why is there no guide as to what is happening in body over this cycle and how it might make me feel. If these are normal feelings then this should be documented somewhere with an explanation. If I know what is happening it my body, if I can visualise it, I can cope with how it makes me feel a lot better.



Maybe its out there but I just haven’t found it, please let me know if it is?






The diagnosis…

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 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”


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.



“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.


“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 3am blog

It is 3am…

Why do I always awake at around 3am…although frustratingly never exactly at 3am on the dot…this is gauged  by the clock on the oven in the kitchen.

When I started my treatment 2 years ago I was warned about the 3am witching hour, or should I say the 3am Google hour. It seemed unbelievable that this was a common thing or that it would persist but two years on and I still consistently awake at 3am.

However, I no longer wake up and Google. I have Googled every site on lung cancer to check mortality rates for different scenarios and none of them really answered the question that I wanted an answer to, one of the few questions that Google can’t answer, that is; How long have I got left to live? I have Googled every side effect of my chemotherapy, and none of them really answer the question that I wanted an answer to, that is; Is how I am feeling normal? I no longer get trapped into reading chat rooms, often full of people looking for answers to these two questions for themselves or a loved one.

During a counselling session I was advised not to look at he clock when I got up in the night and definitely not to Google. I have kicked the Google habit (mostly) but can’t not look at the clock. If I didn’t look at the clock I would never be able to get back to sleep for two reasons:

  1. It might not be 3 am. The repercussions of it possibly not being 3am would be impossible for me to be able to bear. I would worry, why have I awoken early / late (delete as applicable), what has changed? Something new to Google…no I can’t go back to looking at the same information regurgitated a million times.
  2. It might not be 3 am. The repercussions of it possibly not being 3am would be impossible for me to be able to bear as I may have more or less hours sleep available before I have to get up at 6am. Not knowing this would worry me to the point that sleep would become impossible.

Three in fours times I am able to get back to sleep eventually safe knowing that I have under 3 hours left until the alarm goes off. One in four I don’t and I use the time wisely tossing and turning trying to resolve every unresolvable problem that exists in my life in my head. In these cases sleep is impossible right up until the seconds after the alarm goes off, at which point sleep returns like a long lost friend whispering “go on, just shut your eyes for a moment, you won’t be late, it will be fine”.

So this is a new tactic. Blog at 3am, I will let you know how it goes. Not sure who you are or if there is even anyone out there. Not sure I really care…no I do care…but it is something I have not direct control of…I will save stoicism for another blog, perhaps a 3am blog?

Do you have any idea how hard it is to write a blog!

I opened this site over a year ago with the full intention of blogging my thoughts and feelings at least on a weekly basis. This is my second attempt.

It is not hard, but there always seems to be something that I put in the way that stops me from doing it, why?

  1. Is it because I am lazy? yes probably.
  2. Is it because deep down I am afraid of publicly expressing my thoughts? Yes, definitely. I am private person. (Err why are you doing a blog then?).
  3. Is it because I keep finding reasons not to do it, putting my own barriers in the way so that I am justified in not doing it or putting it off? Yes, a very annoying trait of mine.
  4. Is it because I am finding it quiet difficult to find the time to learn how to use this WordPress thing. And therefore keep putting it off until I have taken the time to do the tutorials? Yes, see 1 and 3 above.

So far it has cost me a stack of cash for nothing. Albeit not as much as my monthly gym membership has cost be over the last two years since I stopped going. Why do I not go to the gym anymore. See 1 to 4 above and substitute some of the words because I can’t be bothered to.

Anyway 1-4 are all true and yet here I am blogging.

What has changed? Nothing. Maybe the sun is out my computer is on and I got an email from those WordPress people and it reminded me that this was something that I wanted to do.

And now I don’t really have anything to say. So here is the rub. When you are at you most animated and you really need to say it you are not sat at your computer ready to record it! When you are sat at your computer it because you have logically been through the process of finding the time, switching it on, logging in (it no longer does the facial recognition thing?), and remembering your password. I am now in full logical mode ready to record my inner most thoughts. No, I am sat in front of screen having been through the angst of logging in and I having nothing left to express. Dam.

Is that how you spell ‘dam’ when you mean…’drat’ (is that a word?)?

Immediately I feel better. I have blogged. Next one will be within a week (he is lying it will be over a year).

The New Normal

Coming soon a blog entitled “The New Normal”.

On the 19th May 2017 (almost a year ago) I was diagnosed with Stage 4 (later downgraded to Stage 3b) Non Small Cell Lung Cancer. (Ps. I never been so happy to be down graded)

A year on I still have Stage 3b lung cancer. I have had a years worth of treatment and I feel the need to record my experience.

At first I have some catching up to do and I will do that by covering the last year in the next couple of blogs. And then we get on with blogging about living with cancer. The New Normal, although there isn’t anything normal about it.