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!