Category Archives: The cancer diaries

The cancer diaries – sort of the end

You’ve probably gathered that I got bored with this subject.

When I first started blogging about my experience of cancer it was because I needed to express some of the feelings I had about the whole thing.  At the time, that was true, but now I really just want to forget the whole thing and get on with my life.

But I can’t just leave you in suspense – the last time I wrote anything about my cancer I’d just woken up on the ward after surgery.  Obviously it’s not a massive spoiler if I tell you I recovered!

The immediate post-operative period was pretty grim.  I was disorientated, felt sick (really sick – the kind of sick you feel when you’re just about to projectile vomit only without the relief that brings), was hallucinating.   A couple of times I asked for medication to relieve the extreme nausea.  This had the effect of making me feel weird, as if the muscles in my legs had solidified into iron bars, but had no effect on my nausea.  So I now felt sick and weird – great.  I decided to settle for just feeling sick.

I went through a process of stoma education.  Learning to cope with a stoma goes through a number of stages :-

 

1)  It’s just there and every now and again a nurse checks your bag and empties it when it’s full.

2) You have to ask a nurse to empty it for you.

3) You can empty it yourself but you can’t get to a bathroom so you have to ask a nurse for a bowl to empty it into then hand said bowl with its malodorous contents back for disposal.

4) You can empty it yourself in the bathroom.

5) You learn to change your bag under supervision.

6) You can change your bag without assistance – you’re flying solo!

 

Stage 1 isn’t a problem – you’re not actually capable of caring at this stage.

Stages 4 and 6 aren’t a problem because no-one else has to be involved.

Stage 5 just has to be got through – it’s not too bad but you’d rather not do it.

Stage 3 is humiliating.

Stage 2 is beyond humiliating.

 

But all things must pass, and I worked my way through these stages.  Not without a hiccup – no-one thought to tell me that bags always leak when you first start changing them yourself.  For two agonising days I believed that, even standing in a hospital bathroom with all the time in the world, I lacked the manual dexterity to achieve something a Health Care Assistant could do in less than a minute in the middle of the night with me lying in bed.  Despite all my efforts, less than an hour after changing the bag I would feel the tell-tale moistness that indicated a leak.

This situation continued until the day of my discharge from hospital, when a Stoma Nurse (not the familiar Hazel) responded to my panicked cry for help by watching me change a bag and promptly telling me there was nothing wrong with my technique but the bags I’d been given clearly weren’t right for my body shape.  She provided me with various samples to try and after one false start I didn’t look back.  Within a week I could have changed my bag blindfold with one hand tied behind my back.  I never actually tried that.

I went home, still feeling extremely nauseous but convinced that I would feel better once I was behind my own front door.  Which, strangely enough, turned out to be true – the nausea vanished as soon as I crossed the threshold.  I was definitely on the road to recovery.

That particular road was exhausting.  I would go upstairs to have a “20 minute nap” each afternoon, generally waking up three hours later.  I had mood-swings, going from elated to morosely depressed in a matter of minutes.  The low point came when Iain’s cousin Lois stopped me mid-rant over some minor irritation and asked why this was bothering me so much.  I thought for a moment.

“Because it’s easier than talking about what’s really bothering me.”

“Which is?” accompanied by the telephone equivalent of an encouraging nod.

“That I’ve got cancer and I don’t want cancer and that’s the first time I’ve ever said that.”

I burst into tears, threw the phone down and sobbed inconsolably for the next hour.  But it probably did me good.

The  high point came a few days later when the hospital phoned to tell me the cancer hadn’t spread to my lymph nodes.  I didn’t need chemotherapy and my chances of permanent cure were about as high as they could get.  Champagne was consumed that day.

Three months later I went back to hospital for my greatly-anticipated reversal operation.  This went well.  Unfortunately, the recovery process didn’t.  My newly-reconnected bowel went into stasis so it wouldn’t empty, resulting in projectile vomiting and a repeat of the constant nausea I had after my initial operation.  This went on for several days, during which time I refused to get out of bed and the staff, recognising that I clearly felt too ill, didn’t try to persuade me otherwise.

Eventually things started to move.  I will spare you the description but I can say that I immediately began to feel better.  Nine days after my admission, I was allowed to go home and begin my new life.  The usual length of a hospital stay for ileostomy reversal is three days.  I think I broke some kind of record.

So here I am, nearly two years post-diagnosis, fit and well.  Regular checks have shown no sign of recurrence and the likelihood is that I’ll remain cancer-free.  I consider myself very lucky, almost a cancer-fraud – no radiotherapy, no chemotherapy, never even saw an oncologist.  But it’s worth remembering that bowel cancer is the second biggest cause of cancer death in the UK.  I’ve just looked this up and seen that someone dies of it every half hour.

So do me a favour – have a look at the excellent Beating Bowel Cancer website and inform yourself about the symptoms.  And if you have any worries, see your GP sooner rather than later.

That’s the end of the story of my cancer but I have a couple of other posts in the pipeline that are related to it.  Look out for those in the next few days.

The cancer diaries – post-op

I don’t know where I am.

There are voices but I can’t understand what they’re saying.  It’s too difficult.

I can’t seem to open my eyes.  It’s too difficult.

Am I dead?  I think I might be dead, but if this is where dead people go I don’t like it.

I try to think about being dead but it’s too difficult.

I let go.

 

I think some time has passed.  There are different voices.

I open my eyes briefly but I can’t see.

Something hurts.

I hope I’m not dead, not if this is what it feels like.

Would it hurt if I was dead?

 

I manage to open my eyes again.  I’m not sure if more time has passed.

I can see something.  A woman looking at me.  She seems concerned.  I think I recognise her.  I close my eyes again.

I don’t know any dead women so if I recognise her that means she’s alive so I must be too.

 

That’s wrong – I know loads of famous dead women, just not personally.  Elizabeth Taylor.  Joan of Arc.  Amy Winehouse.  I struggle to open my eyes again, get a quick glimpse.  No – it’s not Amy Winehouse.

 

A word comes into my head.  “Anaesthetist”.  That’s who she is – my anaesthetist.  I’ve had an operation.  I’m alive.  I feel sick, dizzy and confused, and something hurts.  A lot.  But I’m alive.

 

I can’t think about any of this now.  I’m too weak, too tired.  It’s too difficult.

 

A voice.  Words I can understand.  Someone’s talking to me, asking about pain.  “Yes,” I tell her.  “Yes, I am in pain.”  At least I think I tell her that – I’m not sure that I actually say anything.  I don’t see what she does but she tells me the pain will get better soon.  I close my eyes.  I think I go to sleep.

 

I remember something.  Something about left or right.  It’s important, I need to think about this.  Thinking’s hard.  I’m tired.  Why am I so tired?

 

I’m awake again and I know what it was I was remembering.  My hand goes down to my stomach and finds a bag.  It’s on the right hand side.  Reversible.  My stoma is reversible.  This is a good thing.

 

I open my eyes fully.  I want people to know I’m awake.  Somewhere to my left, a man with an Eastern European accent is refusing to wee into a bottle.  Someone else is calling for a nurse.  A gentle voice asks him what he wants.  He calls for a nurse again.  But the voice is a nurse – why does he keep calling?

 

Someone has turned the ward through 180 degrees.  My bed used to be in the opposite corner.  How have they done that?  Why have they done that?  Are they messing with my mind?

 

I feel sick.  I’m going to be sick.  I can’t be sick – there’s nowhere for me to be sick.  I want to tell someone I need to be sick but it’s too difficult.  Someone sees me and thrusts a bowl at me – what a relief.

I am sick.

A nurse comes over, takes the bowl away, encourages me to drink some water.

She asks me about the pain – asks me to give it a number, between one and ten.

I think about this.  It hurts.  It hurts a lot.  But I don’t want to seem like one of those patients, the ones who whinge about everything.  I used to work in a hospital – I know about those patients.

Seven, I think.  Seven seems like a good number – high enough to make it clear I need pain relief but not so high as to sound like I’m exaggerating.  She gives me an injection.  The pain starts to ease.

She hands me a little control panel for a patient controlled analgesia device.  If I push the button, provided at least five minutes have passed since the last time I pushed it, I win a dose of pain relief.

 

I push the button a lot over the next day or so.

The cancer diaries – I go into hospital

I don’t remember much about the day I went into hospital.

My surgery was booked for 1.30pm, the first slot in the afternoon.  One of the disadvantages of living in this beautiful part of north Northumberland is the inaccessibility of hospital services.  Wansbeck District General, the most northerly General Hospital in England, is located in the south of what is a huge county.  I, of course, live in the far north.  To put this in terms understandable to the average Game of Thrones fan, if this were Westeros, I could see the wall from my back garden.

To make matters worse, Wansbeck Hospital is in Ashington, a place which cannot be easily reached by public transport.  It has no railway station and a bus journey takes about two hours (and there’s no direct route).  Did I mention that Iain is partially-sighted and consequently unable to drive?  And of course the friends who would have taken me have these things called jobs, which make the 120-mile round trip a little bit inconvenient.

I could, conceivably, have asked for ambulance transport.  But I would not have been allowed to take anyone with me, on the scariest day of my life.  Thanks, North East Ambulance Service, but no thanks.

So we took a train to Newcastle, then a taxi to the hospital (hey – it’s only 23 miles, what’s the big deal?).

But we got there, and I quickly took on the role of patient – identity bracelet, sexy anti-DVT stockings, swabs for MRSA (presumably in case I’d picked it up in the 24 hours since they last swabbed me), fetching hospital gown.

The surgical registrar came to see me and reminded me of what was in store (as if I could possibly have forgotten).  One thing that struck me was the stated aim of the surgery – “to prolong your life”.  That temporarily broke through my determined positivity.  What did she mean – I’d have two years instead of one?  I didn’t want my life to be prolonged – that implied the end was in sight.

On reflection, of course, what else could she say?  “Save your life” would have seemed a bit over-dramatic, even for me.

The anaesthetist came next.  I am still, more than a year later, a little in love with my anaesthetist.  On a day when I was terrified, even though I wouldn’t admit it to myself, she made me feel safe.  My one big regret is that I never had the opportunity to tell her that.

A nurse came and gave me an enema, fortunately remembering to point out the location of the nearest toilet beforehand.  It wasn’t long before that information came in handy!

When I got back from the toilet, Mr Bradburn was waiting for me with a few reassuring words before he went off to get ready.  Shortly afterwards I was lead down to theatre – they don’t do trolleys at Wansbeck.

I was in theatre for a long time.  Fortunately I don’t remember any of it.

The cancer diaries – pre-op

I’ve never liked writing about myself.  When I was ten years old, at primary school, the members of my class were given the task of writing a description of ourselves.  I managed four lines and gained a reputation from Mrs Kellett, our teacher, of being lazy.

Mrs Kellett was very glamorous, with bright red lips and fingernails, and drove a bright red sports car to match.  She peppered her lessons with words like “bloomin’”, “flamin’”, “flippin’” and “piffle”.  When her mother was awarded the freedom of Lancaster she made sure we knew more about it than we would ever need to.

Her husband was a farm manager and it was fairly well-known that they didn’t have the happiest of marriages.  He had a moustache, spoke in a pronounced Lancashire accent and once came to help with our class Christmas party.  Even at ten years old I could tell he wasn’t good enough.  Neither were we.

All this is by way of an explanation for the time that has passed since I last wrote about my experience of cancer.  Actually the first sentence was the explanation, the rest was just further avoidance of writing about myself.  I vaguely toyed with the idea of completing the story through the medium of interpretive dance but decided that would be difficult to include in a blog, so here goes with the next instalment.

I was booked in for surgery on May 22nd 2015 and I was looking forward to it.  Maybe that sounds strange, but a part of my body had gone rogue and was trying to kill me – the sooner something was done about that the better.

The day before my surgery I had a pre-op assessment at Alnwick Infirmary.  This gave me the opportunity to visit Barter Books, the huge, world-famous second-hand bookshop in Alnwick which I’d never found time to go to before.  I love books.  I love bookshops.  I’d been told by several people, all of whom know me well and whose judgement I trust, that I’d love Barter Books.

I didn’t.  I think I actually hated it.  I found the layout confusing, the range of books on offer frankly underwhelming and the whole place uninspiring.  But that’s just me – it’s very popular and very successful and I wish it only good things.  From a distance.   Maybe i just feel let down by it.

Anyway, back to the pre-op assessment.  I had an ECG, swabs for MRSA, blood samples taken and another meeting with Stoma Nurse Hazel.  Hazel asked me how I’d gone on with my stoma training pack.  I’m not sure if I’ve mentioned this – I had to spend a day with a stoma bag filled with water attached to me so I could get used to the idea.  This had not been a successful experiment – every time I moved the water leaked out onto my stomach.

“Yes,” Hazel said.  “That happens a lot.  But don’t worry – you’ll soon get the hang of it.”

She used a Magic Marker to indicate the position for my stoma – on the right for reversible (my preferred option) and the left for permanent (if reversible turned out to be impossible).  Then she tried to shave my abdomen using the strangest razor either of us had ever seen.  After a lot of giggling and no success she said “Do you think you could do this yourself when you get home?”

I agreed that this might be the best course of action.

Finally she gave me some sachets of a high calorie drink to build me up as part of the enhanced recovery programme which was aimed to get me out of hospital as soon as possible (and therefore a good thing as far as I was concerned) and more of the delicious bowel prep I’d suffered before my colonoscopy (a bad thing – a very bad thing).  She wished me luck and told me I’d see her again for my stoma education.

I went home feeling anxious to get on with things.

The cancer diaries – I digress slightly

A couple of evenings ago, Iain asked me a question.

“Why are you getting so maudlin about your cancer all of a sudden – on your blog?”

My immediate answer was that I didn’t think I was, but I suppose if that’s how it seemed to him then it might also be the way it seems to other people reading this.   Consequently, I’ve given it some thought and come up with a more comprehensive answer.

The first reason is that it’s now more than a year since I was diagnosed, and in that time my feelings have changed.  Initially, as is common when someone is given news they may find it hard to cope with, I don’t think I really took it in.  Later, I kept it at bay by being relentlessly positive – it wasn’t going to beat me.  Even during the grimmest days in hospital (and some were seriously grim) I managed to tell myself that everything was fine, I was having a lovely little holiday, it was all such fun.

It’s only now, looking back, that I realise how truly horrible the whole experience was.  To give an example, a couple of weeks ago I went for a repeat CT scan.  My first scan, just over a year ago, was to see if the cancer had spread to my liver or lungs (a very real possiblity) but I convinced myself it was a jolly day out as I laughed with the staff as they made five increasingly painful attempts to get a needle into one of my veins.  This time, although the scan had the same purpose, the likelihood of there being anything to find was considered extremely slim.  As I waited to be called, sitting quietly and calmly, I realised that my confidence was genuine – a very different feeling.

For me, the experience of having, and being treated for cancer was a massive con trick I played on myself, telling myself I felt fine and wasn’t the slightest bit worried until I believed it.  It’s the same approach I’ve used throughout my life when facing difficult situations like exams, job interviews, driving tests etc.  But what is probably a helpful technique for handling the stress induced by short-term non-life-threatening events can have damaging consequences when used to deal with potentially fatal illness.  More on this subject later (if I get round to it) but I’ve now reached the stage where I can look back and be honest, both to myself and you, my faithful readers, about how horrible that period of my life was.

The second reason I’m blogging about my cancer is the hope that someone might find it helpful.  One of the first things I did after my diagnosis was to look for survivors’ stories.  I needed to find people who would say “It’s okay.  I had that and I’m still here.  I made it and so can you.”

And I found those people.  I found a man who was still alive ten years after being told his bowel cancer had spread to his liver.  A woman who couldn’t remember when she was diagnosed, it was so long ago.  Everyone I met seemed to know a bowel cancer survivor.  (I also read about people who had multiple operations, radio- and chemotherapy before being “called home” but I ignored them).

Survivors’ stories are great for keeping the fear and dread at bay.  But what’s really helpful is a survivor’s story you can identify with.  A story about someone like you.  So if you’re a fifty-something gay pharmacist with an interest in hypnotherapy, let me tell you something – you can survive bowel cancer.

The cancer diaries – the consultant

After a weekend of trying not to think of anything cancer-related, it was time to go back to the hospital to see the consultant.  Our lovely neighbour Shelagh offered to drive us down as she didn’t think it was advisable that I should do it.  She wore waterproof mascara just in case the news was bad!  She’s practical like that.

We arrived in good time, early but not too early – that would have been agonising.  After a few minutes Iain and I were called into the consulting room where we met Miss Mills, the consultant colorectal surgeon and were re-introduced to Debbie Sharples, the specialist nurse.  Miss Mills, an attractive woman of about my age, smiled sympathetically and asked if I knew why I was there.

“My colonoscopy showed what looked like bowel cancer,” I replied, feeling surprisingly calm.

She nodded.  “It is bowel cancer, but we’ve caught it early.  There’s no sign of any spread to other organs and there’s a very good chance we can cure it completely with surgery.”

She warned me that it was major surgery with quite a high risk of death.

“How high?” I asked.

“About 3%.  But that’s in the general population – you’re young and healthy so a lot less in your case.”

She’d called me young – I was in love.

I mentioned the 3% death rate to several people, some of whom thought it didn’t seem that bad.  Personally, I think 3 people in every 100 having non-emergency surgery ending up dead is quite worrying.  To put it in perspective, the corresponding figure for open heart surgery is less than 1%.

She went on to explain that I would need a stoma, hopefully a reversible ileostomy.  Apparently there’s a minimum amount of healthy rectal tissue that needs to be left after the tumour has been removed.  I was about a centimetre on the right side of this – if they needed to take a bit more than expected I would have to spend the rest of my life with a permanent colostomy.  I could, if I preferred, choose to have a permanent colostomy even if it turned out not to be necessary – I’m not sure why this option was offered.  I’m even less sure why I seriously considered it.  Probably because having it reversed would mean another hospital stay.

During the surgery they would take samples from my lymph nodes for analysis – if cancer cells were found in these I would need chemotherapy to prevent further spread of the disease.

Did I have any questions?

The most important one, given my horror of hospitals, was how long I’d have to stay.  I’d seen mentions on the internet of hospital stays of up to 15 days which terrified me.  Given the positive news I’d just received, 15 days in hospital suddenly seemed less unappealing.  More good news – it would probably only be about a week.  If I didn’t need chemotherapy, the stoma could be reversed after about three months and I’d only be in hospital two to three days for that.

My questions answered, she asked me when I’d hope to have the surgery.  I don’t think she ever asked me whether I actually wanted it – maybe I could have said “NEVER” at this stage, but I don’t have a death-wish.  I considered “How does now suit you?” as an answer but went for the more realistic “As soon as possible.”  This turned out to be the end of the week.  Mr Bradburn, another colorectal surgeon, would be operating.

I was getting the express service.  A few minutes later I was sitting with Hazel, the Stoma Nurse, as she explained some of the practicalities of living with a stoma.  I asked to see a stoma bag – to my shame, even though I’ve been a pharmacist for 30 years I’d never actually seen one before.  I imagined something like a black bin sack so was pleasantly surprised to see a small plastic bag, about the size of my hand, with an opaque covering to hide its contents when in use.  Hazel explained that the output (this is apparently Stoma Nurse for poo) from a permanent colostomy would be very similar to what I was used to producing, whereas from a reversible ileostomy it would be have the consistency of porridge or soggy Wheetabix (yum).  Permanent stoma bags have to be changed each time they fill (about three times a day); reversible ones are drainable so you empty them three or four times a day, and change every three days, ostensibly to prevent skin damage but also because they get a bit yucky after that.  At some time during this conversation Mr Bradburn came in and introduced himself.  I liked him immediately – maybe that shouldn’t matter but it did to me.

I would be booked in for a pre-operative assessment on the Thursday of that week, then admitted for surgery the following day.  Someone gave me a nice booklet about bowel cancer surgery.

Reading this back it seems like a pretty awful way to spend a Monday morning.  At the time, I was probably the happiest I’d been in a long time.  I didn’t need radiotherapy to shrink my tumour before they operated.  I was probably going to be cured.  I had a good chance of not spending the rest of my life pooing through a hole in my stomach.  I didn’t need Shelagh to drive me home – I could fly.

The cancer diaries – telling people

And I thought telling my mum I was gay was difficult!

If you ever find yourself having to tell close members of your family that you have cancer, I strongly recommend not doing it the way I did.  Saying everything seems to be fine but you just need a few more tests to make sure really isn’t going to help in the long run.  In my defence I can only say I panicked.

On the day I had my colonoscopy, my mum was staying with us, so I conspired with Shelagh, my next-door neighbour, to get her out of the way.  The plan was for her to go round for her evening meal with Shelagh and her mother, who would then take her to the cinema, thus allowing me time to process any bad news I might receive and to think about how best to break it to her.

My mum, of course, “forgot” her handbag and had to come back to collect it, coincidentally just as Iain and I got back from the hospital.

“So how did it go?” she asked casually.

You already know how I replied.  Of course she was delighted.  Within 24 hours she had shared this good news with my brother and sister.  And at some stage I was going to have to tell all of them the truth.

Have you ever had to tell a child that babies aren’t really found under gooseberry bushes?  It was as much fun as that.

The cancer diaries – scans

I’d better say before I start this post that my plan to look back on my experience with cancer in real time has failed dramatically because, to quote Joni Mitchell, life got in my way.  Life and the fact I got the date of my diagnosis wrong – for those who care about these things it was 14th May, not 16th.

My MRI scan was booked for Thursday May 21st 2015 and my CT scan for the following day.  As the nearest hospital with the necessary facilities is more than 60 miles away from home we decided to call it a mini-break and stay at a hotel.

The place we chose, St Mary’s Inn at Stannington, was located, rather strangely, at the end of a modern housing development.  This made it a little bit difficult to find on the “it can’t be down there” basis.  However, when we did finally decide that maybe it was down there after all, it was welcoming and comfortable with good food and pleasant staff.  Restaurant service was a little slow but let’s face it, if you’re eating there you can’t be in a hurry – you’re not going on anywhere.  There was something quirky about the design of the building so we asked about its history – “It used to be an asylum,” came the reply.  That would explain it.

But I’m getting ahead of myself.  Before we checked in I had my MRI scan at the Wansbeck General Hospital.  The MRI unit is a privately-run facility so how would it differ from the NHS offerings?  Very little as it turned out.  The reception area was a bit smarter, everything looked a bit shinier and newer, and the cup of coffee Iain was given while he waited for me was apparently Nespresso.  Other than that though, there was no noticeable difference – courtesy, kindness and respect are the same whether provided by the NHS or a private company.

When we arrived I was told, very apologetically, that they were expecting an emergency patient to be brought in at any minute so my scan would be delayed.  This was fair enough – it could have meant the difference between life and death for some unfortunate person – but it was still a bit of a blow to me as I just wanted to get it over with.  The way I was looking at it, from my little pink cloud of positivity, this was the first stage in my recovery.  As it turned out, the emergency patient’s arrival was held up so they managed to squeeze me in first.

I’d been warned that the MRI scanner would be noisy and this is where it gets embarrassing.  As I lay there listening to the various clicks and bangs the machine made, I started to notice rhythmic patterns like an Art of Noise album track.  Once I’d noticed these rhythms I started forming my own and quite getting lost in them.  Before I knew it, I was being woken up and told it was all over.

“That was really quite relaxing,” I commented.  “I bet you get a lot of people falling asleep.”

“No,” came the reply.  “You’re the first.”

 

The following afternoon, I was back at the hospital, this time at the CT scan unit.  This was an NHS facility – if in doubt you could tell this by the less comfortable chairs, lack of coffee for waiting relatives and year-old celebrity magazines in the waiting area.  I had to drink a litre of water about an hour before my appointment to make sure my kidneys could flush out the x-ray dye after they’d finished with me.  Fortunately I didn’t have to retain this in my system – I was free to go to the loo whenever I felt the urge.

After a while I was taken into the scanner room and asked the seemingly innocent question, “Have you got good veins?”.

At this time I was still naive and innocent.  I know now that anyone who asks if you have good veins lacks confidence in their own abilities, usually with good reason.  Someone who asks if you have good veins is probably going to hurt you.  More than once.

After three failed attempts to insert a canula into my left arm and one into the back of my hand, all of which I lied insisted didn’t hurt, we decided to let someone else have a go.  Fifth time lucky.

CT scanners are relatively quiet, apart from a recorded voice that tells you to breathe in, hold your breath, then breathe normally.  At some stage, someone injects you with a dye which gives you a hot flush and a warm feeling in your throat.  This isn’t exactly unpleasant but it is a bit disturbing if you’re not expecting it.  Nobody warned me about it so feel free to learn from my experience.

It was all over in a matter of minutes and I was free to go home.  I would be back on Monday morning to see the Consultant.

It was going to be a long weekend.

The cancer diaries – questions

I’m really spoiling you – two posts in one day.

When someone tells you you have cancer, there are lots of questions that go through your head.  When they then ask if you have any questions, your mind goes blank and you say no.  This is because your mind is protecting you, not from the potentially distressing answers, but from asking questions which are, quite frankly, stupid.

Questions like :-

  1. Are you serious?  No – this is how I get my laughs.  I’m not even a real nurse.  And that tube they just shoved up your bottom – totally not got a camera at the end.
  2. Am I going to die?  Yes, of course you are.  Oh – you mean from this.  I don’t know yet.  I might never know.  Even if it’s terminal you could get hit by a bus before it kills you.
  3. How long have I got?  Sorry – don’t know the answer to that               one either but I wouldn’t give up reading long books just yet.
  4. Are you sure?  About you having cancer?  Not 100% but don’t get your hopes up.  About not being a real nurse?  No – that was a joke.

The sensible questions, the ones you actually wouldn’t hate yourself in the morning for asking, come along later, usually round about 2.00am.  Questions like “What treatments are available for bowel cancer?” or “What are the survival statistics?” or just “?”.  Fortunately you have a nice little booklet called something like “Your Bowel Cancer Journey” which you can refer to, as well as a contact number for the Colorectal Nurses with strict instructions to ring them about anything that’s worrying you.  Not that I ever did, but it was nice to have the option.

And there’s always the appointment with the Consultant to look forward to.

The cancer diaries – How it began

Exactly a year ago today I was given my initial diagnosis of bowel cancer.  Regular readers will know that I made the decision not to blog about my “brave battle with cancer” because thus far it hasn’t been that brave, long or hard-fought.  However, with the passage of time, I’ve begun to see the events of that period of my life in a different light and now feel the need to tell the world/my five regular readers about it.   A word of warning to those who read my blog because they find it funny – posts on this subject might not be.  Then again they might – I never really know in advance.

My original plan was to write a sort of “previously on Game of Thrones” introduction to this, covering the weeks leading up to my diagnosis, but life got in the way so here is a very brief summary:-

 

  • In early 2015, I started to notice occasional traces of blood with my bowel movements (that’s the last time I will use the term “bowel movements” – from now on I’m going to be talking about poo. At the same time, my bowel habits started to change and I would find myself having to abandon my shopping trolley in Morrisons in order to run off and have one of the aforementioned poos.

 

  • Just as I started to think this might be something to worry about, it went away for a while.

 

  • It came back.

 

  • It went away again.

 

  • This carried on until early March when I decided enough was enough and made an appointment to see a GP.

 

  • The GP (not my regular one) did unspeakable things with a rubber glove and an instrument of torture I believe is called a proctoscope and declared that I had piles. As I left the surgery, clutching my prescription for suppositories, a treacherous voice whispered in my ear that I was actually displaying bowel cancer warning signs which should be investigated further but I was too relieved to take any notice and told it to shut up.

 

  • Two weeks later, symptoms no better, I saw my regular GP who referred me for a colonoscopy. I remember he asked me if there was any history of bowel problems in my family and I told him my mother suffers from diverticular disease.  “It’s probably just something like that,” he said.  I didn’t believe him.  I don’t think he did either.

 

  • I had a 120 mile round trip for a pre-assessment appointment, the highlight of which was being told I couldn’t drive home after the procedure so someone would need to collect me – would that be a problem?

 

“Yes – my partner’s partially sighted and can’t drive.”

“That’s all right – you can get a taxi as long as someone’s with you.”

“It’s 60 miles each way – do you know how much that would cost in a taxi?”

“No, and it’s not my job to care.”

 

Some of this conversation may not have actually happened but I feel the subtext was there.  As it turns out, a friend had business in the area of the hospital and gave us a lift.

 

 

So during the evening of May 15th 2015 I stopped eating drank my first litre of bowel-prep solution.  This tastes sort of sweet and lemony and doesn’t seem too bad at first.  The appeal quickly wears off, and when you’ve finished one litre you know you have another one to look forward to.  I got up at 6.00am the next morning to avail myself of this great treat, then waited for the world to fall out of my bottom.  I didn’t have to wait long.  The process was brutal but relatively quick – just as well as I had a journey of about 60 miles to look forward to round about lunchtime.

According to the leaflet I was given by the hospital, a colonoscopy is carried out under sedation and is a little unpleasant but not painful – some people experience slight discomfort.  This leaflet was clearly written by a member of the Spanish Inquisition.  It hurt.  A lot.  I found myself remembering that Edward II was killed by having a red hot poker inserted where the colonoscope was going.

My memory becomes a little hazy at this point.  I know I found myself sleeping off the effects of the sedative in a nice little bed but I’m not sure how I got there.  Gradually, my fellow torture victims were taken away for tea and biscuits (or interrogation) while I was left to doze.  Eventually, a nurse helped me out of bed, gave me a seat in a little room, gave me a cup of tea and offered me a biscuit.  Then suggested I might like two.  As she went off to fetch Iain from the waiting room, it occurred to me that I’d seen other people having their tea around a communal table in a more public area.  What had I done to deserve an upgrade?  It didn’t bode well.

The nurse came back with Iain, sat down, and looked at me gravely/encouragingly/I don’t know, I was still out of it.  Very gently, so gently that I didn’t take it in at first, she explained that they’d found a polypoid mass which was almost certainly cancerous.  Samples had been sent to pathology and I would get a phone call the next day with appointments for urgent MRI and CT scans.  Once these were done I would see a Consultant who would discuss my treatment plan.  Did I have any questions?

As we left the unit, Iain said to me “Don’t worry – we’ll fight this together.”

“No, “ I replied.  “We’ll beat it together.”