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.