How It All Began - May 2016
Make yourselves comfortable. This is fairly lengthy. Here we go.
February/March: We return from a truly amazing, "once in a lifetime"-type holiday in Sri Lanka and I have what feels like a touch of Delhi Belly. I am aware that Delhi is not in Sri Lanka. Perhaps Colombo Belly. Possibly piles (sorry). I put it down to a dodgy crab and think little of it until, after a few days, it fails to go away, at which stage my amazing wife tells me to go and see the doctor.
I go and see the doctor who kindly provides me with a DRE (that’s a Digital Rectal Examination to the uninitiated – sorry again) and tells me it’s probably Delhi Belly, possibly piles or may be IBS. I don’t blame him – how was he to know. It was a pretty quick examination, thankfully. He gives me some things to take and tells me to go away and come back if it hasn’t improved in a couple of weeks.
A couple of weeks later I go back and we agree a colonoscopy would be a sensible next step.
April: My symptoms (which, if you really want to know, basically consisted of the sensation of having a golf ball lodged up my a*se and a dodgy tummy) get slowly worse. I receive a letter from the NHS saying I can see a consultant to discuss the colonoscopy on 5th May. I suddenly remember I have private health insurance (thanks Dad) and arrange a more prompt appointment. I receive an appointment for a colonoscopy on 25th April, in some ways a belated birthday present. I celebrate my 38th birthday on 23rd April, fast all day on 24th April while drinking an intense laxative called Moviprep with a hangover which is not to be recommended then I’m into the Spire Sussex Hospital, Hastings at 0800 on 25th April.
All goes well – nice nurses, comfortable room, efficiency abounds. I’m wheeled in my bed to a small room full of machines that go ping and serious looking people. A nice nurse called Sharon holds my hand while I am sedated and before I know it they tell me I am ready to go back to my room. I remember asking “did you go all the way round” (as in my round my tummy) to which the response is short: “No”.
I think nothing more of it because I am sedated.
Quite a while passes, but I am allowed a ham salad sandwich which helps. I am later told the delay was for the sedation to wear off a bit and to allow time for mum to arrive (Bekky would have been there but was at work) as they felt she should be there too. Mum arrives to drive me home but I am told I am not quite ready to go as the consultant needs to "have a word".
In he comes, closes the door and sits down on the end of my bed. “Right. What were you expecting us to find?” he asks. “A golf ball” I replied. No I didn’t. Instead I said I had no idea. “Well, I am afraid we have found a growth that prevented us from getting the camera around the first bend. It’s serious”.
I actually feel the colour drain from my face. He tells me they took biopsies and there is a high chance it is cancer. CANCER. What the f*cking f*ck? Mum remains resolutely stoical, I am still sedated which is a good thing. He goes on to say I need a “virtual colonoscopy” using a CT Scanner two days later and must fast again from tomorrow morning. Marvellous. From Sunday to Wednesday I lose 3 kilos and am hungry.
Wednesday 27th April The CT Scan goes well, albeit since Sunday morning I have eaten nothing but a plate of scrambled eggs on toast (with Bovril obviously) and a chicken breast with rice and veg. Oh yes, then a bearded man welcomes me into the Radiology Department, places a hosepipe up my backside and inflates me with 6 litres (SIX LITRES!!) of carbon dioxide. That really was spectacularly uncomfortable. Aside from that, it was unremarkable.
Friday 29th April Bekky and I go in to see the consultant for the Big Reveal. The previous few days had been really, very hard on us both. Being told you probably have cancer but not knowing anything more for 4 days is, I suppose, fundamentally challenging on many levels. It was truly, deeply horrid.
The consultant, a nice English chap with a foreign-sounding name, looks nervous as we enter. Not a good start. In a nutshell, he tells us the CT scan has confirmed it is colo-rectal cancer and that there is a “shadow” on the liver, about which they’re not sure. He wants me to go for an MRI the following week, Tuesday ideally, which will paint a clearer picture. This is a turn of phrase, by the way. An MRI doesn’t paint anything but it is very clever. Not to mention noisy and claustrophobic.
He goes on to say it is operable and they should be able to whip it out quite easily, likewise the possible liver cancer. I may well need a temporary colostomy bag. Chemotherapy may or may not be necessary. He is a gastroenterologist, not an oncologist, by the way.
Leaving the hospital, I feel, of all things, bizarrely elated, which goes quite a long way towards boggling my poor wife’s mind. She somehow manages to remain upbeat too, although she later tells me this was a front at the time. She was in utter turmoil. I guess after waiting what felt like weeks to know if what I had was indeed cancer, to me the relief at actually knowing was great. I make various upbeat telephone calls to concerned friends and family and tell them all will be well. I still believe this. I go to the local pub for a pint in the evening and keep the news under my hat. I tell only one friend, who I feel needs to know. I go home merrier than I was before, drink the best part of a bottle of wine and spend the evening in moderately deep but largely positive conversation with Bekky while listening to music.
By the following day, the reality begins to sink in and I realise that, while we feel we are better informed than we were, the information we have is still very scant. How advanced is the cancer? What happens next? Is this actually happening?
The rest of the weekend passes in a bit of a blur.
Monday 2nd May Back to work, which is no bad thing. We are a small and close-knit office and my colleagues are all absolutely brilliant - kind, supportive, caring, lovely.
Tuesday 3rd May I am not looking forward to the MRI which happens today. I am fairly claustrophobic and the last time I went for an MRI I had to bail out early as it all got a bit much. That was a couple of years ago for my lower back, nothing major, whereas this is f***ing serious. I can NOT bail out early.
I roll up to The Conquest in Hastings with my wife, an armful of valium, a CD of mellow tunes and an aeroplane eye mask. I pop two valium. We sit and wait for 10 minutes before being told the machine is broken. Within an hour, they have arranged for the scan to take place in Tunbridge Wells the following morning at 9am. I spend the rest of the afternoon in a bit of a valium haze.
Wednesday 4th May May the 4th be with you, etc etc. The MRI in T Wells is brilliant, as is the valium, the music, and the eye mask. If you don’t like MRIs, take those three ingredients with you and all will be fine. The whole ordeal took nearly two hours but it passed in a flash and all was well. I spend the rest of the afternoon in a bit of a valium haze.
Thursday 5th May Back to work which is a good thing – colleagues are again lovely, I tear about the countryside taking photographs, tying up multi-million pound deals and generally being fabulous. Not really. But I did some work and took a few photos. We go to see the gastro consultant again in the evening for an update. He tells us the MRI scan has confirmed our worst fears, but in brighter news only two out of three radiologists who have seen the liver scan think it has actually spread. Woo. My poop shoot (sorry) has shrunk to the size of a biro because of the tumour.
We are with him for half an hour, asking questions and trying to remain positive. He tells us he will meet The People Who Know More About This Sort Of Thing Than He Does the next day and then call us with a further update. He also arranges for an initial meeting with a consultant oncologist the following Tuesday 10th May and hands me back to the NHS who are better at cancer than the private sector.
Friday 6th May I do a morning at work then get the phone call just after lunch which hits me hard. Reality, I suppose. They are going to do the chemo first (neoadjuvant chemo to try to reduce the size of the tumour and stop the spread before operating) then if that is successful, they will operate. They will probably need to remove part of my bowel as well as part of my liver and I will likely have a colostomy bag for some months. The oncologist, I am told, will tell me more when we on Tuesday.
It is a beautiful, sunny Friday afternoon, I go out of the office to call first to my wife and then my parents. I sit under a tree overlooking a field, sheltering from the sunshine on my bald head and feel rather melancholy for the first time since it all began. Reality. I decide to go home where I sit in the garden with my wife and feel rather melancholy with her before retiring to the pub for a couple of medicinal jars in the evening. Things improve.
Saturday/Sunday 7th/8th May What actually happened last weekend? Please note memory loss has no relevance to the hour I spent in the pub the night before.
Monday 9th May Work
Tuesday 10th May Work in the morning then off to meet the consultant oncologist at 1pm in Hastings with Bekky. The oncologist is an amazing woman who pulls no punches and avoids any sugar coating whatsoever. We are joined by a Macmillan Cancer Support nurse who is brilliant as well.
I have cancer. It is serious. They will do everything they can to treat it but there are no guarantees. The colorectal tumour may well have been growing for some months before I first felt it. It is therefore “advanced”. The liver is also a concern. We are talked through the MRI scans in detail and we see the lump(s) for the first time. Forget golf ball – it’s the size of a tennis ball. Bugger.
My chemo will start the day after tomorrow. They could fit a stent to keep my back passage open but there is a small risk of bowel perforation while operating which would require an emergency operation which in turn would mean I could not undergo any chemo for some weeks afterwards as the chemo reduces the body's ability to fight infection. Likewise fitting a colostomy bag now. They need to shrink the tumour ASAP in order to keep my bowels moving. That is really the only option.
BUT there is only a 50% chance this first type of chemo will work. If it fails, they’ll try another type but they feel this is the best place to start, it has the highest likelihood of success. She says that, if it is working, I might begin to feel an improvement within 2 – 4 weeks. If not, another CT scan (without the carbon dioxide) is on the cards so they can measure the tumour(s) against the last scan. Clever stuff.
I can’t tell you how brilliant this lady is in terms of relaying information. Absolutely, utterly bloody brilliant. We leave feeling informed, worried, but largely positive. She has a way of being positive without being too optimistic. I am to come back tomorrow morning for a full briefing with a chemo nurse on what to expect on Friday.
Wednesday 11th May The meeting with the chemo nurse is terrifying. “You probably won’t experience any of these side-effects” she says, “but I want to go through them all with you just in case”.
There are 4 A4 pages of the stuff.
My particular favourites were laryngospasm – “This can make you feel as if it’s difficult to swallow or to breathe. It can be very frightening... The symptoms can be made worse by cold temperatures, so avoid having cold drinks or breathing cold air for a few days after treatment”.
And peripheral neuropathy – an intense tingling in your fingers and toes if they get cold, and if you happen to touch anything cold while experiencing this, it can feel like an electric shock.
Ironically, given I am mostly bald already, she says she doubts the rest of my hair is likely to fall out. Hilarious.
Afterwards she shows us around the chemo ward, which is a surreal experience. What the f*ck are we doing here?! Reality. I am given an ECG by a pretty nurse who attaches 10 electrodes to my body to ensure I have a heart beat. I do. We go home, our heads spinning. In the evening, I go for a pint as I suspect it may be the last one I get to have for a while.
Thursday 12th May A day at home, mentally preparing. And mowing. Might not feel like mowing for a while.
Friday 13th May (Yes, I know) Chemo day. Bekky and I arrive in the chemo ward at 10am and are quickly taken into the room where it will happen. A nice nurse called Shansi with a thick Indian (or may be Sri Lankan?) accent sits me down in a large, comfortable purple chair and sticks a thingummy in the back of my hand. She does it very well. There are about 8 others in the room in various states of disrepair. Most seem quite chipper.
First I have a dose of glucose through the drip, then a dose of steroids, then I have to wait a while before the chemo starts. They attach a large clear bag to an IV machine then to the thingummy in my hand. It starts to drain in and continues to do so over the course of 2 hours. After a while, Bekky goes off to town to do a couple of things. My phone is on silent when she calls to check if all is OK. I miss the call. She jumps straight back in the car and hurtles back to hospital having only done half of what she wanted to do. All is OK.
I chat to the guy in the chair next to me – Sean – who has some sort of lengthily named blood disease which he has been undergoing treatment for over the last year. He is due a bone marrow stem cell transplant in July which will return his immune system to the state of a baby’s.
The whole ordeal is surprisingly bearable – there’s an upbeat mood in the ward, the nurses are professional, knowledgeable and lovely and the only side effect I can feel is a moderate pain in the vein into which they shot the poison which feels a bit...burny. I am unplugged and we go home. On our way out we say goodbye to the other patients who all look up, smile and say goodbye too. It’s quite a nice moment. We have a common bond.
We leave with a bag containing a plethora of drugs including 63 chemotherapy tablets which I am to take over the next 9 days to continue treatment at home, 12 steroid pills, anti-sickness pills and some anti-diarrhoea pills. I am a walking pharmacy. My wife looks after me amazingly and is strong, comforting and caring.
Since then... Well, so far so good. I feel tired and a bit more dopey than usual but not much more. Not too sick, no diarrhoea (much), just a bit groggy. Or at least I thought as much until this morning when I went out to throw a frisbee for the dog and bumped into a mate and then I realised that I am definitely not quite normal. Very spaced out and wobbly.
So I have been taking it easy – reading, watching TV, writing this, and I have discovered an entirely brainless but very entertaining channel to watch on YouTube – a video blogger/film maker called Casey Neistat who is an only-slightly nauseating American chap who somehow makes me laugh and seems to have a good heart. My wife assures me it’s insanely boring unless your head feels like mine, which I hope it doesn’t. If it does though, check him out.
I shall not be returning to work immediately (sorry colleagues). I don’t even dare drive in my current state. I guess I am lucky in that my reaction to the chemo has been fairly mild thus far but I certainly don’t feel normal. The fact that the chemo tablets are going to be surging through my veins until next Sunday doesn’t help. But then I get four days off before we start the cycle again.
In the meantime, I am due to meet the consultant oncologist again on Tuesday week for a two way update on progress. If there is anything important to report before then, I will let you know.
A lot has happened in just under three weeks. It has left our heads spinning, and yours too to a degree, I am sure. However, despite whatever overtones I have managed to put across here Bekky, myself and my family are largely very positive. I am young, I am in superb hands and they are doing everything they can to tw*t this f**ker (sorry mum) before it tw*ts me. All I ask you lovely people to do is keep positive for me, keep everything crossed, pray to whichever deity you choose, and keep the positive vibes coming.
Sorry this has gone on a little longer than I had planned but if you’re still reading, thank you.
Now I am going to drink a small bottle of beer for its calorific content.
PS My wife has been amazing. A-maz-ing. We’ve both wobbled occasionally, but I want you to know how wonderful she is. I have been her rock for a while now while she has had her medical issues, but now we are both being rocks for each other and it’s brilliant.
As you were.