So what’s been happening?

Sometime back in September (I think – maybe earlier) I got a headache.

Nothing major, although slightly unusual for me as I don’t usually get headaches without reason – really the only headaches I ever get are due to a hangover, even lack of sleep or too much coffee doesn’t usually give me a headache. Thought little of it, but after a couple of days it was getting unpleasant.

Life at this time was difficult. I have a demanding job which has recently become very intense, we have a young family and we are desperately pushing to move house having had an offer accepted etc., and were just pushing the legal work through. So, maybe I was stressed. Would be new for stress to give me a headache, but I did have a lot on my plate so this seemed a plausible explanation.

Then in late September one Friday afternoon it became so intense I had to leave work early while in the middle of a training course. I called my wife on the way home to let her know I was in a lot of pain and was coming home to lie down.

I arrived home, went straight to bed and was crying with the pain. This was a pretty bad headache.

Over the next couple of weeks my headache continued to worsen. I started seeing an Osteopath who thought it may be an old neck injury aggravated by stress, and a doctor prescribed Naproxin which didn’t actually have that much effect, even when I was taking it with other painkillers.

We moved house, and the stress and adrenaline of that gave me something else to focus on, although the headache never subsided. Then a few days later I came down with a cold.

A real cold. Man flu, but real. Very sore throat, tired, an insane sensation in my legs which felt as though I had something crawling through my veins and woke me in the middle of the night wanting to rip my legs off. The only good thing was the headache had gone! I was due to return to work on the Wednesday after taking four days off to move, but took the remainder of the week off sick.

I went to a drop-in GP clinic as my symptoms seemed very severe for a cold, and he said I had some generic virus, but commented that I looked pale and I should have my blood checked. I did this, and returned to work after the weekend feeling a little better while waiting for the results.

Monday morning. Bloody headache’s come back! Maybe it is the stress of work after all! Feels manageable though. Unfortunately yet again it gets worse as the week progresses, and I end up leaving early on the Friday again.

The next day my wife is having tea at a nice hotel with some friends, and I am home with the children. I receive a letter from my doctor saying that the results of my blood tests are back. She’d tried calling but as we’d moved I hadn’t updated them with our new phone number. Fortunately the Royal Mail redirection service had kicked in otherwise I’d have not known for a few more days. She told me I was “very anaemic”, to stop taking my Naproxin straight away and start taking iron tablets.

Ok, so that’s not uncommon, nothing to worry about. Start taking iron, I’ll be right as rain in a few weeks. Loads of people get anaemia.

Correction. Loads of women get anaemia. Turns out the leading cause of anaemia in men is gastrointestinal bleeding. And the main reasons for that are stomach ulcers, non-steroidal anti-inflammatory drugs (NSAIDs) of which Naproxin is one, as is Ibuprofen, or a cancer in either the stomach or bowels. Ok, that’s a bit more serious. I have no other symptoms so none of them seem obvious, but ulcers can be brought on by stress so that seems the most likely.

The next day we go to see my in-laws who have also just moved. I’m feeling a bit weak, and when chatting to my wife she suddenly says to me “Your lips have gone blue.” I look in the mirror, she’s not wrong. Moments later I feel quite unsteady and very cold. After a conversation with an on-call doctor, paramedics are sent to me who tell me that my vitals are ok and give me the option of going to hospital. Knowing that I had a doctors appointment the next day, and was feeling and looking better by this stage, I eventually declined.

Monday, I see the doctor, and am told that my haemoglobin count is 8.1, normal is 13-17, and my iron count is 2, normal being 22-375. I basically have no iron, hence feeling extremely tired and weak. I’m told it is unlikely to be a cancer as there is some indicator in my blood results that would be in the hundreds if I did, and mine was twenty-something. The doctor sends me for more blood tests to see if I have a vitamin B12 deficiency, which is also a cause for anaemia. I quite like that idea, as an injection every few months to top me up doesn’t sound bad compared to the other options!

Tuesday, I feel awful. Really really weak. My wife takes me to A&E where the nurse thinks I need a blood transfusion. I’m seen quickly, and checked over thoroughly, but ultimately sent home and told to see my GP who they called there and then to tell them to accelerate my investigations as there is clearly something wrong.

I see the doctor the next day, and my blood tests are back already. My B12 is ok, so she wants to refer me to a haematologist. I come home, and try to book an appointment privately only to be told it is a three week wait. Highly frustrated, I phone the doctors surgery near our new home having just registered there, to seek a second opinion. I see Dr Isaac that afternoon and while initially taken aback by his bluntness, I leave satisfied: he has listened to me, told me to stop running to A&E and doctors, to go home and rest and that an investigation wasn’t going to happen overnight, and neither did it need to. He upped my iron dose to six tablets a day (equivalent to 20 times the normal recommended daily intake of iron!) and had explained things to me far more than anyone had previously. I left reassured, and more significantly with a referral to see a gastroenterologist who would likely want to stick cameras in me. I still have my headaches, and I’m starting to notice that they get worse when I exert myself physically or mentally. Weirdly, the noise of children in the background while listening to someone talking is the worst, but I guess if you think about the amount of filtering that the brain has to do in that situation and the fact that mine is effectively oxygen-starved, it’s not a huge surprise.

A call to my private health insurance (I am fortunate to have that provided through work – I nearly cancelled it a few months ago to save on the tax, and it has a £200 excess, but very glad now that I didn’t!) and they provided the name of a gastroenterologist who worked at Bushey Spires. Armed with an approval number from them, I made the appointment and I first met Dr Leahy just over a week ago on the 7th November.

My initial perception of Dr Leahy was that he was matter of fact with little bedside manner, but he seemed to know what he was talking about. He went through my history and explained that he would do what they call in the trade a “top’n’tail”. He cannot do this however until I’ve been off iron tablets for at least five days, and he performs the procedures on Fridays, so I’m booked in for the 16th. He gave me some Phospho-Soda which I need to take the day before to help clear me out in preparation. The procedure itself doesn’t phase me, but having just started to feel better on the iron tablets I wasn’t looking forward to stopping them, and reading the instructions with the Phospho-Soda I basically can’t eat for more than 24 hours beforehand, which will not be fun!!

Phospho-Soda – Thursday 15th November
My good God that is disgusting. The packaging says “Lemon-Ginger” flavour, but I’d describe it more as sea-water with added salt, with extract of several other metals that has been fizzed in a soda-stream and shaken to remove the fizz but leave the slightly carbon-y taste behind. I missed the lemon and ginger notes.

My last food was a soup and roll at lunchtime, and half an hour later – knowing I wasn’t allowed any more food until tomorrow evening – I was famished! I have had to drink about 3 pints of water tonight but weirdly don’t feel bloated. I won’t get too graphic here, but basically this stuff is to flush me out so that Dr Leahy can see clearly tomorrow afternoon. I should be in for a fun night…

Heads or Tails – Friday 16th November
Breakfast: glass of water followed by another dose of Phospho-Soda. Still not tasting lemon or ginger…
Surprisingly I’m not feeling too hungry this morning, and last night I slept uninterrupted, which was unexpected. The preparation has certainly done its job, and we head off for 2pm at the hospital.

Now I have huge respect for the NHS and think its great we have a free health service, but the pace, friendliness, atmosphere and calm of a private hospital is quite a contrast. I was walked to my room, my wife was brought coffee (filter coffee at that) and we were made to feel very comfortable.

Was a couple of hours until Dr Leahy came in, which was a fleeting visit to get me to sign a consent form. Still no bedside manner unfortunately. I was then walked to theatre, helped into my bed and then wheeled into something that looked like it belonged on a high budget film set. And a beaming, friendly Dr Leahy greeted me and started a discussion about my favourite food. Most of the people in the theatre agree with my favourite, Indian food, and one of the nurses and I explain to everyone why they really must go and eat at the Cinnamon Lounge in Kings Langley. Dr Leahy even makes a note of the spelling of Chicken Makahni I was completely wrong about him and felt instantly at ease.

I lay on the bed, on my left side, oxygen in my nose, cannula in my arm and bit down on a plastic mouthpiece that they would put the tube in. I was told that the sedative was going in my arm, but felt no different and was surprised at this, but at the same time felt absolutely ok with things as a half inch tube was shoved down my throat. Just a couple of minutes later and it was taken out again, and they prepared the other end and invited me to watch on the monitor. I’m convinced the monitor was to my right and I was lying on my left, but somehow could see it fine! I recall seeing a growth and remember him marking it with ink. Five minutes – tops – and it’s out, and I’m wheeled into recovery. I remember a bearded man removing my oxygen tubes, and another five minutes and I’m back in my room. Although apparently I’d been gone well over an hour so it all probably took much longer than I thought, but it certainly wasn’t unpleasant, so the sedative did its job! Certainly nothing to be afraid of.

An hour or so later, and Dr Leahy comes into the room. He tells me he doesn’t beat around the bush and then there it is.

“You have bowel cancer”

Perhaps (probably) because I was still under the effects of the sedative this didn’t seem to affect me too much. I guess a small part of me knew this was a possible outcome. He goes on to tell me he’s referring me to Mr. Arbuckle who is apparently the country’s leading expert on laparoscopic bowel tumour surgery (I don’t actually remember that specific point but my wife has reminded me) and that I will be seeing him on Wednesday evening, and I’m to get myself booked for an emergency CT either tomorrow or Monday.

Bucket list
I always thought if I was ever in this kind of situation that I’d instantly think about the things I haven’t done – drive an Aston Martin, take the kids to Disney, take a hot-air balloon ride, get a motorbike, go scuba diving, see the Northern Lights, write a musical, ride in a helicopter… the usual stuff. But no. It appears that when faced with my own mortality, the first thing i do is make sure my life insurance was sorted and that I had as much lined up as possible so that my wife and kids would be ok. I guess that makes me a half decent person after all, dunno.

Obviously I speak to my parents, close friends etc, and get similar reactions. Shit, can’t believe that, are you ok, let me know if there’s anything we can do. We are blessed to have some very good friends who have already helped us out tremendously when I just had anaemia and no doubt will continue to do so. A few people tell us if we need space that they’ll stay out of the way, but my overriding emotion is that I want things to be as normal as possible. I am not embarrassed, afraid or too emotional to talk about it, and I have enough self confidence not to worry if I end up getting upset in front of anyone about it.

The morning after the night before – Saturday 17th November
I had some weird dreams. I don’t remember them, but I know they were strange. My wife tells me she had a bad night’s sleep because I was so restless and apparently talking in my sleep. No real wonder I guess.

Weird thing. My headache’s gone.

Yes, finding out you have cancer is shitty, but weirdly there is a silver lining in that at least I finally have an explanation for my anaemia. So maybe it was stress related?

I’m allowed breakfast today but nothing after until I have had my CT scan at 1pm.

The young lady doing the scan is very friendly and I’m seen straight away. She explains exactly what’s going to happen, I hop on a bed, am popped inside a machine which whirs around a bit, then 30 seconds later the first scan is done. She then injects a “contrast” – I think this is iodine – which will flood around my body and help show things on the scan more clearly. I’m told there are three symptoms I may or may not get – feeling warm all over, a metallic taste in my mouth which some patients have reported can be avoided by not swallowing as its injected, and the sensation that I’ve wet myself. Luckily I just get the warm feeling and its quite pleasant, although I’m slightly surprised that something injected in my arm can get around my whole body so quickly. Back in the scanner, a recorded voice tells me to hold my breath, a few seconds later I’m out and can breathe again. This is repeated once more, and by 1:15pm I’m in the control booth seeing all of my organs in x-ray for the first time. She’s very clear that she won’t do any kind of diagnosis or even highlight any ‘bad bits’ but gives me a whistle-stop tour of my heart, lungs, liver, stomach, kidneys etc. Quite fascinating seeing the inside of your own body.

My wife and I decide to use the kid-free time to grab a bit of lunch together, and I suddenly find myself with a menu of burgers, steaks and all sorts of other foods I really like. I’ve always enjoyed food, and I’m not the healthiest eater by a long way, but I suddenly find myself thinking very carefully about what I’m eating. Chicken wrap in the end, and I even opt for low fat dressing on my salad rather than my usual blue cheese or mayonnaise. As we eat and talk, I realise that the sedative from the day before has only really just about started to wear off, and for the first time I find myself almost tearful but stop myself as we are in a restaurant.

The rest of the day is a typical Saturday. Our two daughters (aged three and one) are too young to understand other than the fact that Daddy has been to the doctors, but we explain to my nine-year-old son that I have a nasty lump in my tummy that the doctor will need to cut out, I’ll be in hospital for a few days but then will be back home. I don’t believe in lying to my children, but he is a worrier and there’s no point in him worrying about something that may never happen. If chemo or any other bad things need to happen we will deal with it at the appropriate time.

At bedtime, I decide it may be therapeutic to get my thoughts down in writing. I’ve never kept a diary or anything like that before, but I mentioned writing a diary to my wife shortly after the initial diagnosis, and she suggested a blog. So here it is, and thank you for caring enough to read all the way to this point. I intend to update it with my progress so please keep come back if you wish or ‘follow’ to get updates, and please feel free to post any comments.

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11 Responses to So what’s been happening?

  1. George says:

    I love you xx

  2. Leanne says:

    We were so sorry to hear this news Dan but are wishing for a full and speedy recovery for you. Continue to be brave and let us know if we can help in any way. Leanne & Ant xx

  3. Katie says:

    Wow.
    I don’t know what else to say.
    Except that I hope this is over really soon so we can come round for another curry!!
    Love from us x

  4. Pennie says:

    So sorry to hear your news Dan. Sending lots of love and get well wishes. We’re here if you need anything at all. Lots of love, Pennie xxx

  5. Kirsty says:

    God Dan, you really can write! Write that musical regardless! Those words really see inside all the thoughts, emotions and reality of it all – a hard read actually, even with having spoken to you earlier, or been there for parts of it. Huge hugs as always, all our love The Macs x

  6. Ali says:

    Dan, so well written and great way of expressing your emotions, here for you all the way, the Mays xxx

  7. Wishing you a speedy recovery. You are exactly right the cinnamon lounge is really good grub, writtien down the name of that chicken dish too. Love to all of you from all of us.

  8. legalalien06 says:

    I just have agree with Kirsty – you *can* write.
    And I have to agree with you, too – that stuff they give you before the top & tail is foul. And I only had the tail! I hope you didn’t have to take more because of the topping.

    As I get older, (and I’ve been getting older for a long time now so my experience on this topic is a given – trust me :-). As I get older, I have sometimes, perhaps more than just sometimes, if truth be told, wondered what I would do if I heard what you heard last Friday. Without any real answer until now.

    I hope I would be as honest, composed and as dignified as you.

    Love
    Dad xxx

  9. Colin says:

    You are defiantly seeing the right man for the job, Susanne has known James Arbuckle since he was a first year registrar at Watford General. whether its done at Spires or Watford, you’ll get first class treatment.

  10. The world is missing a good musical about hot air balloons with a Dr Leahy cameo. Make it so.
    Hope you’re fixed up in no time mate – good to hear the better news on facebook just now.

  11. Phil nic says:

    Inspirational mate. fingers crossed that you keep getting good news from here.

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