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!!