Week 4 - 6th July to 8th July

So I had my operation on Tuesday morning having been admitted yesterday!  Then on Wednesday I was discharged again, carrying an extra 24" of tube.  Apparently, I have the feature on a semi-permanent basis.  Not quite sure what "semi-permanent" means but will need to find out about that at some point!!

So, Pam brings me home again and we wait to see how this revision has gone.

Turns out, it has made a major improvement.  I feel a lot better.  In fact, so much so, that I feel able to pop into work now and again.  However, it is summer, so not too often!!  In fairness, I am signed off, and all of a sudden I seem to be the busiest man ever with all sorts of follow up appointments, including lots of doctors appointments to do with the recent developments, the ongoing blood pressure carry-on, the ongoing hernia, etc, etc!!  I also decide to get my teeth sorted and generally get a cleaner "bill-of-health"!!  All good seems fine for now.

Week 3 - 21st June til 29th June

So another week slides quietly by!  Well maybe not so quietly!!  It was a busy week, culminating in another operation on my birthday (28th June).  I should have been aware that having an operation at the weekend wasn't a great idea!  Problem is, and there is no massive blame from me on this one, there are less skilled staff around.  I know they have standards to comply with and I am confident that the chap who got all dressed up to perform my procedure didn't really mean to mess it up!  But he did as it turned out and he didn't put a long enough drain on the end of the shunt he fitted!

 24" extension added!!!

To add some detail, I was in bed, on my back, for another week with a drain fitted all week.  The plan this time was to leave my drain in until Sunday morning, remove it pretty early, and whizz me off for immediate surgery!  I'm not 100% sure why it was planned that way, but it was and you have to go with the plan.   And to be honest I was well ready to have the operation done.  After a week of buzz, off, wee, buzz, on, it was all getting a bit much!  So I signed the authority paperwork and we planned the operation for Sunday morning!

At around 6am I was woken by a surgeon who came to remove the temporary drain.  That all seemed to go fairly well.  Then we had to wait a while for a recovery bed to be available before they would y are me to the theatre.  Not sure how long the operation actually was, but maybe an hour or two?  All seemed good and I was woken to be told that all was good and that I was back at the ward, rather than in recovery!  Two days later I was discharged!

However, the list of drugs they gave me was pretty long and I had to taken then either side of food, etc.  All a bit inconvenient, but I guess you make it all work don't you.  I also had 2 more dates in my diary, for check up appointments!  Today was the Monday, and I was due in for the first check up on Thursday, so not long to wait.  All was good that day and everyone seemed happy with my progress.  The surgeon who did the stitch and staple removal was the chap who'd done the operation, so all was well.  I came home but really struggled with a bad head and no energy.  And the following day the wound sites were swelling!   Pam and I decided to struggle on without consultation as I was due to see the main surgeon on the following Monday anyway.  We kept the appointment and Damien took one look at the job and threw his arms in the air.  He'd recognised a classic "shunt too short" reaction!  He booked me straight into the unit for a revision!  That revision involves a 2' (yes, feet!!) extension!  Apparently, it is coiled up neatly inside me!!  Delicious.

Week 2 - June 13th to 20th

So a week at RVI and no sign of going home.  Pam has been in to see me twice a day, every day.  She is the most dedicated wife I could hope for.

So it is now Monday afternoon and she has popped in to say hi.  Well we sit and chat for 10 mins then I run out of new news!!  Then I try to find stuff to talk about but it is tough as nowt really happens from one day to the next!  And making stuff up just doesn't really work either.  So we do have some longish silences!  I have spoken about them before but just so you know!!

We flick between subjects and explore certain things.  In fact, if only we'd discovered our mutual love if scrabble that would have been a great thing, but we didn't!  That has to wait till I come home. It's good when we get there but not just yet!

So what do you talk about.  Well turns out everything becomes so much more important.  My drugs plan is always interesting, and changes quite a lot!   Also, their plans for my ongoing treatment are always good, and today is no exception!  My head has become infected and they are worried about the swelling becoming too big.  Tomorrow they are planning to do a lumber puncture if they need to - I can't wait!!

Tuesday

So that we are.  It is Tuesday morning and guess what!!!  Costas has come to put the shunt in.  Today it is just a drain, although it's a nasty old job.  During the prep, I cough and spray him with CSF!  CSF stands for cranial, spinal fluid I think, although that could be wrong!!  PYou have to lie on your side, with your knees pulled up to your chest, in a kind of feral position.  Then they poke a needle into your spinal cord which is no fun.  Why?   Because they can't see where they are going and have a massive risk of hitting your nerve.  And that makes you jump like mad, and I mean like crazy!  As soon as they go off course, and hit your nerve, you can direct them as they just need to adjust their angle of attack.  But until there is a hit, we are all in the dark.  When they hit your leg just shoots away and they know they have hit something.  They are pretty keen to find out which side it was!!!  And I tell them straight away, although how they can't tell beats me!   Anyway, after a couple of millimetres adjustment he plunges the needle into the canal and bingo, off comes the fluid!!  They decide to drain me down to something like 10, although what they actually measure in is a mystery!!  So after about 15 minutes it's the drain in, they remove it and apparently all is good!  If only..

Thursday

So the lumber puncture worked, but only a bit and they now want to do another.  Great stuff, I am prepped again, back to foetal position and a new surgeon comes along.  I manage to avoid spraying him too, and just give him my full support!  Well he turns out to be 100% useless, and can't get into the canal at all.  After 15 mins of poking around he gives up and starts another attempt.  This time, straight in and no diversion via my nerves!  He drains more pressure and all seems good, until they have a chat later and decide to put me on a drain!

Well that is a different experience!  For a start off you can stand up, so it is flat on your back territory.   All fine until you need a wee, and believe me when I say that is a highlight of the day.  So for a wee you need to
1. Push your buzzer
2. Wait maybe 5 mins for a nurse, who can't do the job!
3. Wait another 10 mins for someone who can to come and clamp the drain off
4. Shuffle to the toilet, complete with drain on stand!
5. Wee
6. Return to the bed
7. Buzz
8. Wait for the wrong nurse, although sometimes you do get the right one!
9. Get unclamped!

So that's a 20 minutes minimum process I guess.  Well what else is there to do anyway?

Friday

It is Friday teatime and my surgeon pops to see me.  That's good I think.  He is doing his final round before he nips off for the weekend, but he has lined me up for something rather special.  He is keen to leave the drain fitted over the weekend and is checking all ok.  I am used to lying flat by now so I have no problem.  Trouble is, about 2 hours later the tube pops out of the hole and we have to call the out of hours chap.  When he come we chat about the process and he decides to leave it out.  Great, I knew my surgeon would be pleases!!  He wasn't! As the next blog tells you...

Week 1 at RVI, June 6-12, 2015

So, a whole week at the RVI and no release date yet.  So what is going on?
Well, it appears I have an infection in my head which has caused
1. Massive confusion
2. Weird reactions and conversations
3. General strangeness!

So what are they doing about it? Well, not exactly loads it seems but I have been moved around a few times now and will be staying a while longer.   This wouldnt be 100% accurate as I am sitting at home, some 5 months later, trying to recall a story that I am not really sure about!

But, let's try anyway!  So after week 1 at the RVI they have managed to do some tests on me and decided to do an operation today.  I get moved to the main suit where they will operate, which is interesting as they make me walk there!  Hey ho, guess that's a good thing!

I go through the usual preparation and they get me ready for a bone flap removal and general wash out!  All interesting stuff, which I hope you like!  The reason for the bone flap removal is that they think it could be infected and as it is fully disconnected from my skull, they cannot treat it with IV fluids, so it has to come out!  Strange when you think about it but I guess it makes sense!!

So that is phase 1 complete, although I have no idea how long it takes... Not as long as a full removal I don't think.  So, I get moved to a ward for recovery which is where it all gets a bit interesting!

Day 2 June 7th at RVI

Ok, so day 2 comes and goes?!  

I am not well, and the fuss continues but still a bit slowly!  The breakfast arrives at 7pm although at this time of year, fast approaching the longest day, it is light from around 330am.  Really.

So that wakes me as I sleep alongside an open window and the sun starts to shine down on me every morning.  It's a pain in the bum, but once you are woken by it that is it!  Every blooming day is the same!!  Hey ho, roll over, but it is really hard to sleep.

I doze, off and on, on and off...   It's all a bit dull but at least breakfast is quite early.

Today, Pam comes in, as she does every single day.  We never miss a slot and I owe her so much now.  And it is just beginning.   I have zero idea that I will be kept in as long as I am.  I really don't remember much being discussed today except a rough plan for the week ahead and the diagnosis of what "might" be wrong with me!!   It's all a bit of a game until tomorrow when the consultants come back to work!

So it's another wasted day really although the steroids have started to ease my head at last.

June 6th Day 1 at RVI

So there I am.  Sitting in the quiet room with an enormous headache.  Waiting...   For a doctor.   Or anyone who cares!  I am sitting patiently, but my head feels ready to literally explode.  I have zero idea of what is happening to me and care even less.  It feels dreadful.

I wait, wait, wait for hours.  It seems ages until a doctor comes to see me, but eventually someone does come along.  Now I am not going to get this very correct as I have a massive bout of confusion, so will need to check with Pam.

I think, after waiting for 4-5 hours I saw someone who was interested.  I am like a random person in the hospital, just wanting someone to make me feel better.  It isn't the greatest feeling you can have but you just want someone to make you feel ok again.  Well it doesn't always work quite like that, and this time it really didn't.  I was suffering and they weren't 100% sure what was wrong with me.  They knew it wasn't more tumour (I think) but what could it be?  Well, they needed to run some tests to be more sure.  However, on a Saturday AM there aren't as many doctors around and it's all a bit of a wait around.  A few nurses did come to see me, but didn't make much progress.  Eventually, later in the PM  a weekend registrar came to take a look and he did a few procedures, including taking a sample from the swelling (I think).  He sent it for analysis and said he'd come back and let me know what it showed.  Finally, some progress although not loads!!  I think he put me on steroids too but will need to check that too!!

Back at RVI

So I went in to the RVI in May for a routine (if such a thing exists) operation.  I think it was the 11th that I was booked for.  All went really well and I was in and out within 2 days.  Yes really amazingly just 2 days.  Wow, all good.  I remember as my sister Rebecca came to visit me and all seemed well.  I had been in from Tuesday til Thursday I think.  Becksie came to stay the following weekend and I was tip top.  It was Eurovision weekend and we had a party on the Saturday evening to celebrate.  Great fun, eating tea on the floor!  What a good laugh.  And all seemed well for a couple of weeks, but sadly things did take a downhill dive!

I had been getting a headache and been calling the hospital asking about options.  They eventually came back to say that the removal had been radio-narcrossis, which needed removing, but wasn't dangerous.  The best bit of news was that there was no need for any follow up after the operation.  So why did I have a bad head?  I pushed hard but was told not to worry, so I went out to a gig at the pub up the hill.  Well you do when they say don't worry don't you?  Well I did anyway!!  All seemed good and we'd been to see a band that I know, gave them a hand with the load out and ot dropped at home at 1.30am!   Like I said, all seemed good and I went to bed around 1.30am but was rudely awoken at 2.30am with a massive headache and a huge swelling on my head!  Wow that was sore and had come from NOWHERE!  I had to wake the wife and tell her.  She was pretty distressed and we decided to wait until first light to call the hospital ward.  They were very kind and asked me to come in ASAP, which we did.  And 3.5 weeks later I am still there!!  So what happened?

Sorry for the break in action! Been laid up unexpectedly!

Hi.  Really sorry for the break in communication!  But I am back now, having spent far too much time in the RVI recently!

I know I was telling the story of my tumour journey last year, but to be honest we had got towards the end of things.  And I have far more exciting and slightly depressing news to tell.  Well it would be depressing if I wanted it to be, but as I don't it isn't.  Upshot was that after a long spell in hospital I finally had an MRI scan and they decided the tumour was now inoperable!  I cried when they told me.  But then I had to get strong to talk to the kids (Pam was with me when I got the news).   Pam went to collect Jordan as she lives in her own flat in Newcastle these days, whilst I waited at home.  That was a long hour, but they arrived and I sat then down and told then the latest.  We all cried again, and I can't say it was great, but it was worth doing and, although i have no idea what t hey currently think, at least we are all on the same page!  They were both upset but kids do come to terms with things in their own way, and right now they seem fine!

So, what happened at the RVI then?  Well, quite a lot over the 5 weeks that I was there.  I am going to attempt to retell that story, starting with how I got there in the first place, which is actually good news!

It all started on 12th May with a planned trip for a routine (if there is such a thing) removal of what we had been told was more tumour!   I knew something wasn't right as i had been suffering with headaches for a few weeks and had pushed to get my latest scan!  The results made interesting reading and my oncologist had already decided it was more tumour and she'd managed to speak to my surgeon who'd been really keen to have "another go"!  He'd been surprised to hear that the tumour had returned but was happy to go again!   So, following a quick chat with him at his consulting room, a fairly fast pre-admission meeting, I was booked in for about 10 days time!

That is also a good thing as they don't deal with it quite so dramatically and you get a chance to make plans.  I arranged was able to organise suitable cover for all my commitments and leave everything well planned for, before heading to hospital on the Tuesday morning.

The operation was a great success and I was released to go home on the Thursday afternoon.  Wow, major brain operation and I am home in 2 days.  Incredible.  And I felt great.  In fact my sister was due to come and stay at the end of the following week so Pam and I spent a lot of time getting rid of junk from the spare room, getting it decorated and laying a new carpet, etc!  And I was fully involved, everything seemed perfect.  Rebecca came to stay and we had a good laugh doing the stuff we had always planned to do.  All good you would say!  So how did I end up in hospital for 5 weeks?...

Wed 30 Apr 2014: Clinic Day

Ok, so back again and this time it's a fairly fast zap followed by a fairly long wait to see my nursing team.  They are over worked and, depending on your politics, underpaid.  But this isn't a political blog so we'll move on.

When I am finally seen they are totally happy with my progress (Day 3 of 30).  Bloods are all good and showing no signs of a bad reaction to the radio or chemo.  We chatted a bit about hair-loss (something to look forward to in a week or so!).  I had never actually twigged that the beam goes straight through your head, although it does make sense really doesn't it.  When I tell people that they all say, "ohhh yeas, of course!" 

Anyway, then you are spat out of the system to get on with trying to live.  I've been popping in to the office but I can't really do much useful!  It's about 15-20 minutes to the Freeman Hospital from the office and the traffic isn't too bad.  So it's good holding point and I spend a bit of time with the staff recounting my tales!!  I like it.  And it works as therapy for me (sorry if I bored anyone too much)!!!

Oh, and I still can't drive which is getting old already!!  

Tues 29 Apr 2014: Tuesday's are blood test days

So, my first Tuesday, and apart from the routine radio/chemo session it's a day for the regular realignment x-rays.  It's means another 10 minutes on the bed and involves another part of the machine revolving around your head, with more strange noises.  And it is also the day for bloods!  That is another queue but it never the less takes another minimum of 20 minutes.

It is just a blood test in readiness for the clinic tomorrow, and nothing was ever an issue, but it was still part of the regular routine. Every week a different nurse, and some less gentle than others.  I learnt that I have a brilliant vein in my right arm which they all tended to go for, but one nurse went for the other side!  Apparently I have an even bigger one that side but it doesn't show like the right!!

And that's it for another day.  I will tell you about clinic tomorrow.

Mon 28 Apr 2014: Radiotherapy and Chemotherapy start

So, the wait is over. Secretly I am dreading this next phase.  You see so many really tired and poorly looking people on chemo/radio.  And I suspected that I'd become the next victim.  The hospital were good at explaining but there was a a distinct lack of written instruction.  And when you are being bombarded with useful information, it's impossible to remember everything, and it's awkward writing it all down.  I ended up having a late evening call with Dr Lewis, my consultant, to give my views.  She was dismayed to hear what I had been told to be honest, and wanted to go and speak with the member of staff concerned!  I don't think they work there anymore!!

We head in to the Freeman Hospital again, a journey I already know quite well.  I have a complete list of  every appointment for the rest of the year, which is to the minute!  It's a shame I don't have them anymore as they kept changing them and reprinting the remainder, and after the first 5 times I stopped keeping them!

I had to go and collect my chemo tablets for the first 3 weeks of treatment, which consisted of the poison (aka Temozolmide) and some cheap anti-sickness drug.  They said to take the Temo and hour before anticipated treatment time, and the anti-sickness as needed.  Well I did think I would need it so I popped the Temo and went for my first zap.  The shell was there, and it all went rather well, I thought!  Little did I know that 5 hours later I would be honking up like a ... Chemo victim!  It was one of the nastiest experiences of the treatment and I am thinking "6 weeks of this! No!!!"

We'd come home from the hospital and I felt fine.  We gone via the bakers for a couple of pasties and a muffin. Delicious.  Then I had been and done some work on the computer, nothing too taxing.  But then it came upon me.  I remember saying to Pam that I felt a bit sick, and we agreed that I should maybe have one of the anti-sickness drugs.  Well it didn't even get to my stomach and I was violently sick several times.  It always amazes me how fast food digests in your stomach, enough said...

The only positive thing was that after about 5 hours it had all passed and I felt pretty normal again.  Until tomorrow!!

Wed 9 Apr 2014: The fitting

I never really mentioned why I was having this mould made did I?  Well, it is to hold you still during the radiotherapy, which is really important as it keeps you in the exact same position every time.

So, today I returned for the final fitting which involves lying on the bed into the back shell, then having the front shell fitted over the top, and then fitting the legs which click it down to the bed.  In effect, you are sandwiched to the treatment bed.

The first fitting is pretty interesting to as the technician presses really hard onto the shell whilst they heat glue the legs in place.  And at this point there were no eye holes!  Apparently, lots of people choose not to have them, which surprised me!  I opted to have them put in, figuring that it would none easier to have them so I had the option, and I a so glad that I did!  It made it so much more bearable, although you are 100% incapacitated!

Final fitting, but no eye holes yet!

And that's it really, the legs are being glued on, and a couple of eyeholes made and the shell is good to go.

Tues 8 Apr 2014: The front shell

So here's where things get slightly more interesting.  Time for the front casting to make the front part of the shell.  This time the first thing they do is fit the back shell legs and they lie you down to do that.  They make you comfy and use some putty to get it temporarily set up.  Then they bond the posts permanently to the plate that will fit into a slot on the radiotherapy bed.

Then you have to lie back into the mould and the technician plasters your front of your face.  Again, they fit you with a skull cap and grease you up again, and then it all starts to go dark!  And quiet!!

 

I can't see or hear you!

It takes about 20 minutes for the procedure and that includes 10 minutes in the dark.  They cover your eyelids with cling film and grease and slap the plaster of Paris all over you leaving a couple of small holes to breathe through.  This is the bit that most people don't like, but I was fine with it.  Although I was glad to get it off, if I am honest.  Anyway, eventually it does come off and the process to make the front shell continues...

Hey presto!

Mon 7 Apr 2014: The Mould Room

Well I think I went in to the Freeman at least once before this appointment but this on sticks in my mind massively.  It was pretty scary really although I was absolutely fine with it, as it turned out.  The process lasts 3 days and starts with an appointment to make a plaster cast model of the back of your head.  It takes about 15 minutes and involves grease, rubber and warm plaster of Paris strips.  The technician makes you sit in a chair and had obviously done lots of these.  He made a possibly traumatic experience quite good fun, and I was grateful for that.

Ready for action

Back shell setting

After the cast is set the technician pulls it of fairly forcibly and that is it for the day, apart from a good clean down.  They busy away for the rest of the day make a positive from this negative cast from which they produce a heat shrink style back shell for your head.  That was the easy bit!

Sun 23 to Sun 30 Mar 2014: Friends are important

It's truly amazing how good your friends are when you are ill.  My mother suffered from cancer but didn't want people to know.  I, on the other hand, could hardly hide the 6" scar on my head and the distinct lack of hair!  But I didn't mind, as I wanted people to know.  It helped me deal with things.

All my work colleagues were amazing and clubbed together to buy me a couple of really useful things.  First off was a Kindle full of books, followed quickly by a wireless hard drive loaded with films.  Great presents to get when you have long days to fill.  I was so thankful to them all.

I had a steady stream of visitors, and I apologise massively if I miss anyone out - there were so many of you!

Barry, my co-director and his with Lorraine came over a few times.  Lorraine was pretty shocked to hear the diagnosis and I think Barry may have been a little short on detail when telling her!  Richard G popped over to watch a Grand Prix with me, and also came to see me another time too.  Bryan brought me a curry and some beers (alcoholic and non-alcoholic!!!) on evening.

Chris Humble came over with magazines and books for me (looking back its a shame we hadn't discovered backgammon by then).  Bernice came across with some books and a lighthouse jigsaw (see separate article).  Victoria and Shaun came over one evening for a coffee and cakes.

My dear friend form many years ago, Sue Doberman and her husband Stephen also came to see me after a couple of cancelled attempts due to illness.  Another couple of great friends, Julie and James popped in a few times for coffee on their way home from work.

And then there were all the calls from old university friends as the news spread.  First Andy, who later came up to visit, followed by Shanagh and Annette.  It was so good to hear from them all.  One of my best buddies, Stu, who came to visit on the day I left hospital, also stayed in constant touch.  And another great mate, a Robin, sent me a book and regular calls to keep in touch (generally on Fridays).

Each and everyone played their part I keeping me positive and upbeat.  I will never be able to thanks them all enough.

Later, during my recovery, I went out with Kevin from work for a few beers and a general catch up.

Then, of course, there were all the neighbours in the street.  Starting with Paul at number 4, who had lost his young wife to a brain tumour 6 years previously.  He was a great person to discuss details with and, being a house-husband, he was generally around so I'd see him most days out and about.  The new chap at number 5 was really friendly, and again, I saw him a lot as he worked shifts and was building his own extension so was generally around during the days.  Tina and Pual at number 7, Bill at number 2, and everyone else in our bit of The Copse, were supportive and generally really helpful.

I had loads of cards and good wishes throughout the first few weeks of recovery, and it took me all my time to keep in touch with everyone.

Sat 22 Mar 2014: Rebecca and Richard come to visit

Weekends don't make much difference when you are signed off from work,  but it does mean that other people can come to visit more easily.

My sister Rebecca has been amazing throughout my illness.  We have been in touch so much more than we used to be, including at least 4 visits.  This time she came up with Richard and stayed at a local hotel.  They arrived in time for lunch and we sat eating and chatting for a few hours!  We did manage to get out for a gentle stroll which was my first walk of any distance.  2km through the village and back was enough for me and it was quite hard work.  I was slow, through lack of exercise and the effects of the anaesthetic, but I enjoyed it.  My plinking right foot was still a bit strange but it wasn't any worse.  It felt great to be doing normal things again, the sun is shinning and it feels quite spring-like, and I am alive!

Rebecca, or Becks, and Richard (I won't share his pet name!!!) left to go to their hotel where they were eating that night.  It seemed strange for them to be leaving as they'd normally stay with us, but they didn't want to put us to any trouble on their account.  And I think they were secretly looking forward to a nice meal and then hotel cooked breakfast!!!

Vegetarian of course!

Thu 20 Mar 2014: What happened to you?

That was the question I was asked as I queued at the checkout of PC World in Kingston Park.  It was late and there were no staff at the tills.  We were queuing with another lady.  She looked at my head wound and said "What happened to you, did you have a big car accident?"  "No, it's worse than that, it's a brain tumour", I replied!  Well she did ask.  The look on her face was priceless, and I think she wanted the ground to open and swallow her up.  She wished me well, as we paid and headed off!  Bless!!!

Fri 21 Mar 2014: Results

At the time it seemed to take forever for today to arrive.  All the time I had to sit and wonder went so slowly compared to my normal helter-shelter days, when there was never enough time in the day.  But here we were... Friday.  Time to head back to the RVI and see my surgeon, and find out what the laboratory results were.  What was that tumour?

Pam and I arrived at the clinic in good time and didn't have to wait long to be taken through to a private room.  We sat in low chairs around a circular coffee table.  Four of us, plus another student nurse sitting a bit further away.  They checked if we minded the student being present and, of course, we were happy for hero to benefit from the situation.  

I don't remember much but one or two things do stick in my mind.  Firstly, the diagnosis itself wasn't great.  I had had a grade 4 glioblastoma multiforme or GBM.  Mr Holliman was fairly matter of fact, but in a caring way.  He told us what it was and that "We've never had one of these that didn't come back".  Those words have been in my ears most days since!  He also said tha he was very happy with the removal operation, that he thought he'd got it all, and that my care would be transferred to the oncology team at the Freeman Hospital.  Bev was helpful (she was my MacMillan nurse) and had some leaflets and information about GBMs and what to expect next.  They asked if we had any questions, but I don't think we did really.  Not that I remember anyway.  

And that was that.  Another statistic was created.  Another person with malignant brain cancer through no fault of his own.  Life can be cruel.  But as the adverts say - "Cancer - we are coming to get you!"  I was determined to remain positive and focus on beating this tumour - whatever it took.

I was due to go to the doctors at home to have my staples removed, but Bev offered to do it whilst I was there.  I had been dreading it since all the staples were gunned up in scab and crustiness.  I was expecting them to pull and hurt, but I hardly felt a thing.  The removal tool looked a bit like a pair of scissors and it cleverly twisted the staples so that it lifted clean out!  Twenty seven snips later they were all gone and it only took about 4 minutes for the lot.  

Clever little contraption

We came home and had lunch sitting in the sun room.  George came home from college and I bluntly told him.  Probably too bluntly really, but that's been my style with this illness.  No messing, no gentle breaking of the news, no pretending it's all going to be ok!  Just straight out with it. Bang. There, now you know.  Then time for chatting and discussing and being realistic so about what my future looks like.  I remember saying thinks like, "This will be what kills me, but we just don't know when". Tough stuff for a 16 year old to cope with, but he was brilliant.  Yes he was sad, but he talked openly about a BMX rider called Charles Trippy who had a brain tumour a year ago, and had been operated on whilst awake.  He'd made a good recovery but had gone through a lot of what I had or was about to go through.  I think that really helped George cope with my situation - thank goodness for the Internet!

Later that evening I called Barry to tell him the news.  He was driving a van back from a job and was somewhere on the M1 I think.  I could speak for long but told him the news.  He says he almost crashed and had to pull in for a while.  Again, I was brutal about it, which maybe I shouldn't have been - it just seemed to be a way of coping for me.  Barry told me later about how awful his drove home had been.  We've been business partners for almost 20 years and news like this is clearly devastating.  Barry then did his usual and bottled things up, refused to accept my news, and went into a kind of denial about it.

Apart from phone called from my sister and Dad not much else happened.  Rebecca and Ricahrd were due to visit me from Suffolk tomorrow, which I was really looking forward to.  They were staying in a local hotel as they didn't want to be a burden on us, which was good of them.  As became a habit over the next few months, we went To bed fairly early.

Wed 19 Mar 2014: The beginning of the monotony...

Not much happened today.  Pam stayed home and we didn't do a great deal to speak of!  Well we'd had a busy time recently, and you can be overdoing things!!

I want to tell you about my companions in HDU at the weekend.  Picture the scene in a busy unit with several 4 bed sections.  Across the end of each bed was a huge chart for the nursing staff to record all their observations.  It was quite a major project and the chart must have been at least A1 sized, mounted on an angled board like draughtsmen would have used.

The other three beds in my section were occupied with three men, all older than me, who had had various brain operations!  Next to me was a chap who had been rushed in following a bleed of some description.  He was pretty confused, didn't really know what was going on, what day it was, etc.  then when his family came in he seemed to perk up loads and had a normal conversation with them!  The doctors and nurses use the standard series of questions to assess your level of comprehension; "what's your name, when were you born, where are you, who's the prime minister?"  It gets extremely monotonous and maybe that's why he was being difficult!

Diagonally opposite me was an old chap who was even more confused, having been in the unit for over a week.  He didn't have much control of his legs and he kept flipping the covers off and almost falling out of bed.

Then, straight opposite me, there was the most irritating patient in the world.  He'd had meningitis and had been having intensive care nursing for almost 2 weeks.  Thankfully he was on the mend, but it was going to take a while!  He spent a lot of the day sleeping and wouldn't eat his food very well.  Then, just as it was time to sleep he'd come awake and would start asking what time it was.  The night nurse had obviously spent several night before I arrived, telling him it was ten past ten, time to go to sleep now.  Five minutes later, "Nurse, what time is it?" She'd tell him it's just 5 minutes since you asked, its a quarter past ten now. She'd encourage him to settle down, but it was no use!  He kept that routine up all night!!  Then when it was time for breakfast he'd fall asleep.  I am sure he wasn't trying to be difficult, but those nurses have the patience of saints.  It must be tempting to put a little sleeping tablet into their medication!!!

So that was what I spent 48 hours with, which was ... entertaining I suppose!!

Tues 18 Mar 2014: Big feed

Back at home, in my own bed, and it feels good.  One of the challenges I face is that I've lost weight since falling ill and need to build myself back up again, so breakfast consists of cereal, poached egg on toast, actimel, fruit juice, toast and marmalade, coffee and a clementine!  All made for me by Pam, every morning, and delivered to my bed!  Yum, although the steroids I am on are making things taste odd!

Losing weight had been my challenge for 2014 but now I feel weak and need to put weight on!  You can't win can you!

The other thing that I have to do is wear the surgical stockings.  For 6 weeks, day and night.  They gave me two pairs - one to wash and one to wear!  They aren't the sexiest of stockings, but, as a well behaved patient, I do as I am told!

It wasn't as painful as you might think!

The only time I remove them is to go in the bath!  I have always been a shower man but I am not allowed to get the wound wet!  I have however decided to remove the plaster to let the air get to the wound, which is healing fast.

The bath is amazing and Pam helps me wash my hair properly for the first time.  It feels awesome although I am paranoid about the water running into the wound and hold a flannel firmly against it to keep it dry.

Breakfast in bed!

After the bath, I got dressed and put on my support stockings again.  Mmmm gorgeous.  And that was the about it for the day.  I remember the sun shining and sitting in the sun room, chatting to Pam.  I don't remember who else called but my sister Rebecca was on the phone to see how I was doing fairly regularly.  That's one of the brilliant things about being ill, is that it brings lots of people back into your life.  Rebecca has been brilliant throughout everything and has been "point of contact" throughout all my treatment.

The get well cards started to arrive thick and fast too.  As word spread about my condition loads of people sent their wishes.  Pam was also keeping people up to date on Facebook so was continually updating me on messages.  Of course, she had to do that, as all my communications devices had been condfiscated!  No iPhone, no iPad, no laptop, no nothing!  I had been well and truly forced to rest and all temptation to work had been removed!  Work would have to look after itself I was told!!

Mon 17 Mar 2014: Home sweet home

Well the squeezer squeezed all night! First one leg, then the other. And repeat...  Going to the toilet in the night involved a bit of a carry on to remove them, waddle to the loo, then refit!  Of course the pump unit didn't like that very much and it went into alarm mode a few times!  Not that anybody came to see if I was alright though!!  Apart from toilet breaks, I managed a decent nights sleep but I really needed the bed adjusted with my head slightly raised.  Until I did that I couldn't get comfortable at all.  Hmm, may need to get something equivalent for home!

My good old friend Stuart from university days, came to see me today.  It was so great to see him and he burst into the room in his usual 'larger than life' way.  He came up from London especial which was amazing of him.  He only stayed an hour and he was gone again!  That's his style but it didn't matter as it was brilliant to see him.

Pam came in at the same time too.  I think they'd met in the cafe for a briefings of my slightly unusual looks!  Whilst she was there the nurses said I could go home that afternoon, as long as the surgeon was happy.  He'd been to see me and did a double take when he saw my eye!  He was surprised and a bit embarrassed but also unconcerned as that sort of thing does happen from time to time!

After a bit of a wait for drugs to be dispensed (again) I was finally released into the wild sometime after lunch.  I was to return on Friday to get the results from the lab about what had been removed!

It was strange walking to the car and I could feel my right foot wasn't working quite right.  It was kind of "plonking" as I put it down.  I put it down to having been immobile for several days and didn't think much of it, although I was slightly concerned that my brain may have been damaged in the operation.  The plinking last about a week or two but cleared up fully eventually!

Once back home it really was a case of right, what do I do now!

Sun 16 Mar 2014: You must have fallen over!

"You must have fallen over" is what the nurse said to me when she came to help me after my shower!  Yes, I was finally now free of all tubes and wires, and was offered a shower.  What hair I had left was sticking to my head and I was desperate to freshen up.  Trouble was HDU doesn't have showers for patients as they don't expect you to get out of bed, so we had a short walk out of the unit, to find a shower.  I think it was officially a female toilet but frankly I didn't care.  The nurse insisted that I sat down on the plastic chair which I did.  She offered to help wash my back but I was fine so she went to wait outside.  After about 10 minutes the nurse came back in, just as I became aware of a dark patch under my left eye!  I asked the nurse if I had a black eye and she took a look and said that I had.  "Did you fall over and bang it? You must have fallen!!"  I had been sitting the whole time and clearly hadn't fallen, or banged it in any way.  I got dry and went back to the HDU, where a doctor had a look.  He didn't seem very interested but I had a huge egg on my temple and a massive purple eye!  Combined with the 27 staples in my head I looked like Frankenstein's monster.  The doctor may not have been interested but I was mildly concerned!!!

I was expecting a bigger plaster! The purple eye and subsiding egg!

The nurses found me a toothbrush so I could clean my teeth and I think they found my bag from the ward so I could have a shave.  All in all I felt like a new man... With a funny looking head!!

Earlier that morning I remember watching the F1 from Australia on "my" TV, but with the sound on very low as it was 6am!  It was the start of the new engine rules and reliability was expected to be an issue, but most cars finished, with Rosberg picking up his first win of the season.  I think Hamilton retired although I'm not sure on that.

The rest of the day was pretty dull really.  I spent most of it sitting in my chair, reading and eating!  Pam came to visit again and we discussed my unexpected eye situation.  The egg had subsided a lot which was good but the eye looked set for a while!  I was also fitted with automatic leg squeezers which are quite a contraption, in readiness for my move to the ward.  It was looking unlikely again, but at around 6pm something must have changed and there was a private room free and with my name on it!  I was moved fairly suddenly, and Pam was there to help me with all my clobber!  My private room was nice, but I preferred the ward environment as there ws more to watch!  But at least it was peaceful and after the usual carry on with medications I settled down for an early night, leg squeezers still attached!!

Here is a photo of me and my daughter Jordan which I really love!

Sat 15 Mar: Rugby in HDU!

As the days go, this wasn't too eventful!  I had an ok night and was still connected to lots of monitors. However, they started to disconnect me as the day went on, which then meant I could get out of bed and sit in a chair more easily!

The main monitor was an arterial blood pressure monitor in my arm.  I don't know much but I do know that arteries are under a lot higher pressure than veins, and to protect them they are deeper from the surface.  It's something to do with flow and return in plumbing terms!  And if any proof was needed, when the arterial needle was removed, despite prolonged pressure, we had a fairly dramatic bleed!  Legs up, head down, feeling faint.  Rather sudden and a bit embarrassing.  I was pretty dizzy but the nursing staff didn't panic, and took it all in their stride as a dark red patch spread through layer after layer of dressings!!  After 15 minutes I was feeling much better and the leak had been plugged!

That might have been the most dramatic part of the day!  As I said I was able to get out of bed, and sit in a chair.  They found me a portable TV, on wheels, and I was parked in front of it.  I spent the rest of the day watching rugby (can't remember the match but I remember England and Wales both scoring a lot of points!), reading, and eating.  I got to know the healthcare assistant who was in charge of meals and he looked after me giving me first choice each meal!

Delicious! ...actually it really was!

It was pretty busy in HDU, with constant observations, and my 3 companions in the neighbouring cubicles each needed lots of attention!  I think I was a pleasant relief to them as I was no bother (apart from a rather bloody mess earlier on), and was only there because there was no ward bed for me to be moved to!  

Pam came to visit me a couple of times, as the kids were away in Sweden at a concert.  We chatted about the last 24 hours in HDU and generally passed a couple of hours.  We had hoped I'd be moved to a ward before bedtime, but that never happened and eventually they came and put me back to bed, still connected to a monitor and with my cathater still fitted!  Very convenient, might need to get one to save me getting up to pee during the night!!  At 10pm it was time to go to sleep, which is when the chap opposite decided to finally wake up!  Brilliant...

Fri 14 Mar 2014: Chicken sandwich

When I came round from the operation my vision was all over the place.  I thought I medley that it was a side effect and there seemed to be genuine concern.  The went and brought the surgeon through and he thought it would settle, which after 30 minutes it did.  Recovery is like production line, as it support 6 nuro-surgery operating theatre.  You get put in a very small cubicle and they gradually move you towards the doors!

I was overtaken but some faster beds as I was not firing on all cylinders.  The upshot was that after a 4 hour operation, it was now past 6pm on a Friday evening in an NHS hospital.  It doesn't matter how amazing the facilities are, it's still Friday evening!  Not much moves over the weekend and I was about tonged stuck on the conveyor belt as it was wound down for the weekend.

As don't think mine had as much chicken in it!

Eventually there was a space in HDU for me.  I was wheels through and was very soon greeted by Pam, which was brilliant.  I was also greeted with the offer of a chicken sandwich that I jumped at having not eaten for almost a day.  No sooner had I taken a bite but I had to put it down so they could do their observations!  And if you think they do them a lot on the ward, welcome to observation central!

I was hooked up with about 4 different cannula in both arms, including constant blood pressure, heart rate and all the other things which make the machine go "bing" fairly regularly!  It was a bit of a struggle to actually pick the sandwich up, but once I was allowed to it became the best tasting chicken sandwich in the world!

Fri 14 Mar 2014: What do you do whilst your husband is having his headopened?

It wasn't until I came to after the operation, and was moved to High Dependancy Unit, that I saw Pam. She had been worried sick as I'd gone in late and it was a 4-5 hour procedure!  To occupy herself she'd decided to have her hair cut (I had mine shaved too, although not to my usual style!). She said she needed to go somewhere that she couldn't escape from and the hairdressers chair seemed perfect.  If I am honest I never noticed her new do, but that was nothing unusual.

But first some details, as best as I know, about how they do the operation.  Lots of tumour in the brain are removed with the patient conscious!  Thankfully, I wasn't one of them.  So I was out to sleep, before they clamped my head in a metal frame and screwed it in position - yes, straight into the scull on either side!  It's to keep you still I've been told!

You may want to slip the next bit if you are at all squeamish!

Once clamped in position, the basic procedure is the slice open and peel back the scalp, for about 6-7". Then having revealed skull they work out where they want to go in.  Once confirmed they reach for their cordless drill - actually it might have a cord, but it's a drill anyway.  The surgeon told me that it has a very sensitive clutch and knows when it is through!!  Just a well I say!  Having drilled a ring of small holes, the get the next tool from the kit and saw around to join the holes together, and hey-presto, out pops a circle of skull, revealing at the brain cells.  I am not sure of the details, so go look them up, ubut there are some membranes to get through before you are actually poking about brain itself!  A sat NAV system guides them to dodgy bit and with a swift flick with the Stanley knife they whip it out.  Then they pop the membranes back in place, shove the skull back in, fold the scalp back over to hide the mess, and staple back together!!  So I make that a drill, a saw, a sharp knife, and a staple gun.  I've got all that in the garage!

Brain Tumour Removal Kit - available all good toy shops

You can read again from here...

I shouldn't make light of the,situation really, as it saved my life, and I was gobsmacked by the skill of the surgeon and his team.  I will never really get to thank him, but for the record, Mr Holliman - THANK YOU FROM THE BOTTOM OF MY HEART!

Fri 14 Mar: Operation day...

It's quite a big operation that I am set to have.  Never having been to theatre before I have little idea what to expect!  I waited in the ward, having not eaten since my cheeky biscuit before bed!  I was hungry but not allowed to eat or drink!  Except I had pills to take and the nursing staff on the ward said a mouthful of coke to wash then down would be fine!  Not so!  When I was being prepped in the anesthetic room, the technician was horrified to hear I'd drunk some coke!  Apparently it's like food and can cause issues!  Well, how was I to know and the nurse said it would ok.  "Who told you that, what did she look like, I'm going to have words...."  Then she injected me with something and it was goodnight time!

Thu 13 Mar 2014: Planning scan

JI think I may have mentioned that the hospital day starts very early! I was up and ready by 7am as they wanted to change my bed. Once again breakfast was good and I knew I wouldn't be getting any food at all after midnight!

Do not feed this man! He has eaten enough!!

I feel like I know the ropes having been in last week, and I occupy myself until I go for the scan.  Not very exciting really, same dye injection, in and out inside 30 minutes.  After the scan I was visited by several people including Mr Holliman's senior registrar, all togged up in theatre greens and overcoat.  She explained the operation to me again and asked me to sign my life away.  There were all sorts of possible side effects of surgery including death!  I guess that's normal but it does make you stop and think.  Do I say goodbye just in case? What about all these projects I'd never got round to finishing?  How will everyone be when I'm gone?  I hadn't even got a will, which is a bit of an oversight!  However, I had spoken to my solicitor who'd assured me everything would be fine, and that he would sort the mess out later!

The rest of the day was the usual routine.  A man, waiting quietly to have his head opened!  Happens all the time!!  Better check his temperature again.... And again.... And again!!

I had the meals I'd chosen from the day before, but there wasn't much point selecting tomorrow's delicacy as I wouldn't be having it!  Nil by mouth from midnight!  I had a cheeky biscuit before bed!  And I actually slept.  The fear of the unknown replaced by the desire to get on with it!

Wed 12 Mar 2014: Back to hospital to meet my surgeon

When Wednesday finally arrived I was anxious to get to my appointment at the surgeon's clinic in good time.  We arrived and it was fairly busy, but we didn't have to wait long.  Pam and I were ushered through to a consulting room where we met Bev who was to become my MacMillan nurse, and Mr Holliman the professor who would conduct the operation.

We reviewed the scans and he told us of his suspicion that it was a tumour and quite a nasty one.  He said it was the size of a walnut and he wanted to get it out as soon as possible.  I was expecting a week or so, but he asked me to go home, pack a bag, call the bed manager and come back into whichever nurosurgery ward has space.  He also said a couple of other things which have stuck in my memory.  His first was " you are never the same once the air has hit the brain".  He also said he'd done a couple of hundred removals like this and he knew what he was doing - that's always good as experimenting on a brain isn't something I'd recommend!  Although, I guess someone was first once upon a time.  "Don't worry Mr Smith, this is my first operation.  What could possibly go wrong!?"

We talked through the operation and I asked how they actually remove the piece of scull.  The answer, amazingly, is that they drill lots of holes around in a circle, then get a saw and join them all together and the piece just lifts out! Wow!  They keep that piece and fit it back at the end, then staple the cut back together.  It is pretty incredible what they can do these days... Thank goodness!

After the consultation was over, we went home, packed a bag and went back to the Royal Victoria Infirmary where the operation was going to be performed on Friday morning!

I went to a nuro ward this time where 3 other patients were being looked after.  One was a drug addict with a nasty abscess which was being treated with full on IV antibiotics, although finding useable veins was a problem.  Another was waiting for a shunt to be fitted to alleviate another condition which was causing fluid to build up in his head which made him very unsteady.  He was a funny chap and always going to the wrong toilet.  He was also pretty adamant that he wasn't going to have the operation!!

The final chap was a very young soldier who'd been blown up by an IED somewhere and was suffering from huge blast shock, as well as other physical injuries.  He'd been in the ward for a few months and was moving to a rehab unit in a couple of weeks.  He was called Dan and he looked so sad.  He didn't interact much, spoke no words at all, and just held a rather scruffy looking soft toy.  Such a sad waste of a young mans life.  I hope he recovered but I will never know.

I settled into the ward, and the institutionalisation and it wasn't long before it was time for tea (chosen by someone who had the bed yesterday).  As ever the food was pretty good and I had just finished it when Pam and George came to see me.  They stayed for a couple of hours before heading home.  Apart from the ongoing routine of drugs that I was already on, and some more in preparation for the operation, observations, cups of coffee, and general constant flow of nursing staff walking backwards and forwards, not much else happened and I went to sleep.  Tomorrow was going to be another big day as I was having the final planning scan!

Mon 10 Mar 2014: Time to tell the team

After a weekend of phone calls, parental vist, and generally coming to terms with the situation, it was time to head in to work on the Monday morning.  I'd been off for over a week and people were wondering what was going on with me.  I had told Barry on the phone, but I hadn't seen anyone else to speak to.

                   This isn't my scan image, but it looks very similar to mine.

I arrived at work and called everyone together who was in the offices and warehouses.  With the aid of a flip chart I stood in front of 20-25 people and told them the news.  I drew a picture of the scan and explained, best as I could, what my diagnosis was.  Obviously there was a stunned silence, followed by tears form some people, and shock and horror all round!  Now I didn't really know much about brain tumours, but I was learning fast.  I also didn't really know what exactly was going to happen, but I did know that I was signed off work for the foreseeable future.  I had been told I had to concentrate on getting better, and work would have to look after itself!  I did my best to explain, and lots of people were amazed by my frankness.  Looking back I may have been rather brutal about it but I just wanted to get the facts as I knew them out as widely as possible.  I think that is unusual in itself, and Barry, my co-director has regularly commented on how incredible I was to stand up and tell the news.  I won't kid you, I was choking up, but I was determined to help everyone else deal with the news by being strong myself.

One of my senior managers came for a private chat and couldn't hold back the tears.  There was lots of man hugging going on, and everyone dealt with it in their own way.  Quiet determination, through to toal panic, just about covers it!

There was nothing much I could do to change anything so the best course of action is to do what you are told and get on with it.  Which is what I did...

Sat 8 Mar 2014: First meeting

It's perhaps not the best time to meet your fathers new lady friend when he comes to visit you following the unexpected news.  But that's how it was as they'd been in the Lake District walking, and had decided to detour over to Newcastle before heading south.

I didn't know a lot about Sue before she arrived with my Dad, but she turned out to be absolutely lovely and so easy to get along with.  It must have been a bit awkward for her too, but she handled it all very well.

Obviously, the main thing we did was talk about the diagnosis and plans for surgery etc.  We also had lunch in our sun room which was the usual "bread and spreads" affair.  There are some habits which die hard and that is a Crerar thing for sure.

They didn't stay too long as they still got a 300 miles journey to do.  I have to admit that it was a little strange saying goodbye, but, nor being one for too much emotion, my Dad dealt with it very practically and off they went.  I wondered if I would see them again, which I guess was a natural reaction.  I am pleased to say that we have seem them several other times in the following months - it's odd how bad news does so much good in other ways!!

Thu 6 Mar 2014: Biopsy or home?

I had an ok night on the ward.  The diagnosis isn't great, but at least I feel I know what it is, have been fully checked for other cancer sites, and generally given a once over!  The doctors seem to be worrie about my loss of weight! I am delighted as I have been trying to slim down for ages!!

Lots of nursing staff came to see me today.  They can't decide if a biopsy is a good idea or not?  In the end, to my slight surprise, they decide against it as they don't want to disturb it.  The plan is for a full removal as soon as possible!

All of which means I am free to go home, which is extremely unexpected, but also, extremely welcome.  When Pam comes in at lunchtime I am still waiting to be discharged and there is a delay on my drugs.  We wait for an hour at least and still nothing, and the nursing team seem too busy to go and sort them out.  By mid afternoon we have to give up the wait and go home without the drugs I need.  One of the nurses lives nearby and she offers to drop them off.

It's wired leaving, even though I've only been in 4 days.  You become institutionalised very quickly and live by the strict mealtime regime.  Outside air smells different somehow.  It's almost as if spring has sprung whilst I've been in the rarified air of the hospital.  But it smells good.  Which is more than can be said for the taste of food!  The steroids I am on make food taste strange, but more of that later.

At home I relax but it is anything but quiet.  The kids are heading off to Sweden to go to Melodifestivln, which is their Song For Europe competition, first thing in the morning.  It's a very early start and complicated by the arrangements for printing tickets for flights and concert entry, because our printer has run out of ink!  We end up heading off to the office fairly late on, to print them there, and I go for the ride out (I will tell you about driving in another article - it's worth the read I promise).  I decide not to go in to the office.  Not really sure why.  It turns out to be a good decision as I am not really dressed to meet people and one of my Memebership of staff also arrives unexpectedly.  I hide in the car!!!

Eventually, we come back home and go to bed... Pam has to be up in 5 hours to take the kids to the station as they are flying from Stansted.

Wed 5 Mar 2014: Can I have a feel please?!

Today I am due a full-body CT scan, and as I am woken at 6.15am by the nurses, who have actually been waking me every 2 hours for blood pressure, temperature, etc, I assume I must be first on the list!  Breakfast is actually pretty good and I eat it all.  The steroids are making me starving, and it's great to have an appetite back again.

After breakfast I have a shower and get ready to go for my scan.  By 7.30am I am sitting waiting, so I start to read.  Pam bought me a copy of F1 magazine and it's good to have time to read it in detail.  The bus drivers are up for their tar bath,  which sounds foul, but seems to work well for them.  That's all that they have to do for the day, so when they are finished they come back to the ward to get ready, for nothing!  

This is the front cover of the F1 I was reading.

Brian gives me a paper to read as he has bought 3!  We pass them between us as if we are at the gentlemens club.  Only we are reading quality like The Sun, Mail and Mirror!!  I return to F1 and the time ticks by!  Eventually the porter arrives and takes me for the scan.

"Breathe in... Hold your breath... ... ... Breathe normally" as the scanner bed moves me through the machine.  If you've never had a CT scan it is quite a performance.  As usual I was injected with a highlighter dye to help them see any dodgy areas deep within!  

I don't have to wait long for the results to come back, which don't show any other tumour sites.  Phew.  However, to double check the multi-million pound technology the doctor comes in and asks for a feel!! I stand there, arms out, pants down, and he has a right old rummage around!  Thankfully, he can't find anything either, so I get dressed and go back to my magazine!

Less than an hour later I am surprised when a different doctor comes and asks for a feel too!  I tell him that someone just had a rummage and he accepts that and disappears again!

The way lunch and dinner work, is that you order the day before, so today I am getting what I wanted, rather than what the last person in the bed fancied!  But I have no idea what I had.  I've got to say that all the food was pretty good though so I have no complaints.

Various doctors come and go, and they are talking about doing a biopsy tomorrow.  They are also talking about building me up for an operation.  I need to find out more which I eventually do... Tomorrow!

Tues 4 Mar 2014: Bombshell

So I have been attempting to retell the events of my illness as they happened, exactly one year on.  And today was a big, big day.  Today we found out the bad news!

Having spent the morning having a detailed MRI scan of my head, Pam had come in to visit me in the afternoon.  We were just sitting chatting when the doctor came through and said something like "you know we are treating this as a tumour now don't you".  Pam may not have known much about the suspected abscess, but she knew about tumours.  They meant cancer!!

Pam has amazing through the journey, but totally understandably, she dissolved.  I will always remember that moment.  The moment that the bombshell is dropped.  The moment that makes an indelible mark in your memory.  Personally I was ok.  I just rationalised it along the lines that it was what it was and couldn't be changed.

We did get taken for a more in depth chat with the A&E consultant, before being moved again, this time to a proper ward.  It was on that ward that I met Brian and Dave, a pair of bus drivers suffering from eczema like I have never seen before.  They were jovial chaps and we laughed and chatted as we watched TV in the day room.  It wasn't until quite late at night that I dropped my bombshell on them.  They'd assumed I must have a similar problem to them, so when I said I had a brain tumour you could have knocked them down with a feather; and they were big bus drivers!  After the shock, they soon returned to their usual banter, and were a brilliant couple of companions for the 2 days I was there.

So I have been officially admitted and have my wrist band to prove it.  I wasn't going home for a while!

Mon 3 Mar: Back to A&E

The last 36 hours, since I was at the hospital, were the slowest that I can recall.  I laid in bed for most of it, managing to get up to watch a bit of Top Gear in the evening.

And now it is Monday morning and there is no way I can go to work again.  I stayed in bed as everyone got up to gol to college/school/work.   My head is still aching; still no worse than a 4/10, but I still feel sick as a dog and I am not eating anything.  I still think it's just a nasty virus but I am getting a bit bored of it by now!

At lunchtime Pam came home to see how I was.  Apparently, according to her, I had been sitting on the edge of the bed at 6am, having been clock watching all night, waiting to be able to take some more pain killers.  Not that they really worked, and Pam tells me that I was struggling with the packet.  I don't remember that at all!

Pam looked at me in bed and I must have looked dreadful as she gave me no option about going back to hospital.  But I wasn't having it and refused to move!  After an hour of nagging, Pam finally managed to persuade me by saying she was going to call an ambulance if I didn't get in the car.

So we go back to the queue at A&E, wait for around 3 hours, until we get seen by the staff, who, once again, can't really find anything wrong with me.  As a final check the junior doctor goes to ask the more senior doctor to come and see me.  He asks the usual questions, does the usual tests, and says that he can't diagnose it either.  But he also says, "Something is obviously bothering you if you have come back to A&E twice.  We've got enough to scan your head if you'd like"

I had never had a CT scan before but happily agreed to it immediately.  I don't remember much about the scan, but I was taken to the holding area in the assessment unit to wait.  They injected me with some dye during the scan to help highlight any "bad" areas!  After the scan was complete I went back to wait on the assessment unit.

It was pretty manic on that ward.  A six bedded unit with lots of sick people in it, causing a constant problem for the staff.  At least there was entertainment I guess!

Pam was waiting for me when I got back and we waited for the results to come through about an hour later.  When they came, the diagnosis was a suspected abscess which meant nothing to me!  And Pam wasn't really aware of them either(surprisingly!!).  The hospital said I would need to stay in, but didn't have a bed on a ward for me, so I had to stay on the assessment unit overnight.  I was so tired, and the chaos was still going on.  Pressing buzzers, shouting, moaning, and general kerfuffle!  Time was still passing slowly but it was getting towards 10pm when Pam left.  The steroid tablets I had been given to reduce the swelling around the abscess had started to work and my head was easing off.  I slept on and off all night, until they came to move me at 5am!  Thanks!!

Sat 1 Mar 2014: First trip to A&E

I I've been to the Emergency Department plenty of times over the years, both for myself, and with family and friends.  It's never the quickest experience, so I wouldn't normally go unless I really had to!  Saturday was one of those days when I knew I should, and my wife was nagging me to go, but I couldn't face it!  Having been in bed all day yesterday, night and day had become one.  Looking back I was a bit disoriented but didn't realise it.  Eventually, I conceded and Pam took me to the RVI in Newcastle.

It was busy.  Saturday, late afternoon, and even the triage took getting on for an hour.  Then it was just a short two and a half hour wait to be seen.  When I did eventually get called through, the junior member of the team did the usual observations, including a urine dip test, but could really find anything wrong.  But she knew I was ill and sent me off home with a prescription for a water infection!  As I left she said to come back if I still felt ill in a day or two!

I thought I'd show you it empty!

So four hours later and I have a packet of trimethoprim tablets for the next 3 days! Oh, and still a poorly head!