Sunday, 28 March 2010

My car's trying to kill me!

First nightshift and on the way to work driving at slightly over the speed limit in the outside lane of the M23 in fairly heavy rain, my car started weaving..........

I pulled over pretty quickly, luckily stopping under a bridge.

My rear passenger-side tyre was completely flat: bugger!

So I emptied the boot of assorted crap onto the back seat and changed the wheel for a skinny spare.
This is definitely not what I want to be doing in my state.

I got to work half an hour(ish) late, full of apologies and in a fair amount of pain.

I spent a very uncomfortable night at work, I didn't feel like driving again so soon.

That's the thing with us Civil Servants, dedication beyond the call of sanity!

Mind you I'd had a fairly large swig of OraMorph when I got my car parked. (by the way that's oral Morphine for the uninitiated) and that's when I started to think my car's trying to kill me (does Morphine cause paranoia?)

When I got home this morning I looked at the wheel I'd taken off - there was a hole in the sidewall that I could fit two fingers in. I must have hit a large lump of something sharp on the road.
I'm just glad it wasn't a front wheel, that would have been interesting in that rain!

I slept like the dead and decided not to go to work the second night tonight, I'd already warned my shifties that that was on the cards.

Friday, 26 March 2010

First day back at work (reluctantly)

Last night I made sure I had all my meds for the day and this morning I headed off for work.

I'd forgotten what 5am looks like, grey cold and not at all like sleeping in bed.

I spend a very weird day at work, reactions from my workmates was very mixed ( I had been told to expect that).
Some thought I was mad to go back, even when I explained my motives, other were happy to see me back.... and more than one looked at me with what can only be described as fear (I really thought everyone knew cancer is not contagious)

I felt tired really quickly, but that used to happen after 2 weeks off during the summer.

My old mate Dave has left while I've been off, he managed to convince BT to pay him £30k to leave 6 weeks before he was due to retire, admittedly he never told them whether he was going to leave on his retirement date anyway.

I was really glad when 7pm came around and also happy I'd made the decision just to work my second day, I've always found the days more tiring than the nights.

Home again I had an early night.

Thursday, 25 March 2010

I hate it but....

After a lot of soul-searching and looking at my bank account and with clearence from my GP I am going back to work tomorrow morning (up at 0445hrs).

I really don't want to but I would be going on to half pay on 2nd June.

I don't have any appointments until the end of April and a lot of my pain has gone.

I should be getting a scan at the end of April/early May and then the obligatory 7-10 days wait for the result would take me very close to the above cut-off date before I start (possibly) any Chemotherapy.

One thing I forgot to mention in my last post is that the consultant said I would not be considered for any trial until a scan shows my tumour starts regrowing - the Radiotherapy has excluded me from consideration.

Chicken and egg situation I think.

Monday, 22 March 2010

A waste of time....

Well, I went to the Marsden on tuesday and when I was eventually seen by Dr Larkin, he said that there was no point in considering me for Chemotherapy until they found out the effects of the Radiotherapy. No s**t Sherlock.....

So, they've passed me back to Sussex (Brighton) Hospital with the recommendation that I have a scan in 4-6 weeks time to see the effect.

The only good things to come from this meeting were that I had a fun ride up to London on my Motorbike (it was a beautiful sunny day) and that I met up with Caroline to catch up on old times.... (thanks for the coffee and the Chocolate Croissant)

Oh, and for my next meeting with Dr Larkin I won't have to go to the Marsden in Chelsea, I can go to the one in Sutton, a bit closer and without the heavy traffic and parking problems of central London to contend with.

2 days after the meeting in London I got a letter from Brighton Hospital with an appointment at the end of April....

So. I'm thinking of going back to work.

I've been reading a lot, but I need to keep my mind going, I need the problem-solving environment.

Plus I'm concerned that I'm going to run out of my 6 months full sick pay. On 2nd of June I'll go onto half pay and at that point I would no longer be able to pay my half of the mortgage, that would bring extra stress on me which I obviously could do without.

Friday, 12 March 2010

The power of the Blog?

After my rant last night...

This morning a fat envelope dropped on our doormat.

I have an appointment to see Dr Larkin at the Royal Marsden on Tuesday...

( feeling a bit embarrassed now)

Thursday, 11 March 2010

Bloody Guidelines...

On monday morning I had my last session of Radiotherapy.

After it I had a long talk with my consultant about all the things that have been going through my head, like:
How much was Prof. Thomas' decision not to operate influenced by NHS policies? why he won't operate when it's a Melanoma, when it would have been appropriate to go ahead on a Sarcoma ( the original diagnosis)? what's the chance of me getting on a trial of one of the new wonder-cures for cancer being run at the Marsden?
Those and lots of other things that I think about in the middle of the night when I can't get back to sleep and the nasty little thoughts are flying around, just below the ceiling above my bed. (gotta love that Morphine)

Sarah (my consultant) told me she's written a letter referring me to the Chemotherapy Consultant at the Royal Marsden (another question.. why hasn't she sent it yet?) and he'll talk to me about the treatment that he's considering for me.

I don't hold much hope for that, apparently Melanomas don't respond to Chemotherapy well.

She also told me that there is a trial of a new treatment, that has a requirement of a certain marker in the biopsy and that this marker is present in the biopsy taken from me back in January at the Marsden (hope building here) but that the Marsden had had a problem with a previous patient who had the same marker when tested by them, but that when a test was carried out by the American Drug Company on the same biopsy (according to the guidelines of that company) they found no trace of the marker and so the patient was not admitted to the trial.... hope dashed, broken on the rocks and washed away by the breaking surf.

Seems I'm not in control here, NHS timetables (which make tectonic plate movement seem fast) and the fact that Clive is so unusual mean that noone has any idea how long I have to go.

Anyway back to how I feel, I was warned of all sorts of side-effects from Radiotherapy, the only one I really have is a lot of tiredness and a feeling that Clive has grown (apparently down to normal swelling)

So now all I have to do is wait...

Wait for the swelling to go down.
Wait for an appointment at the Marsden.
Wait for any increase in pain which will trigger another scan (or a wait for one)

Apparently if I had Breast or Lung Cancer there'd be no wait. NHS guidelines again.

Tuesday, 2 March 2010

Are we nearly there yet?

Today I'm halfway through my Radiotherapy.

The session this morning was interrupted by the machine locking-up halfway through my treatment. My 20 seconds from the back had been done and after the head repositioned itself above me I got a 3 seconds blast then it stopped.

The Radiographer came round and apologised and they called out a tech!

Apparently it happens regularly and they're trying to find out why by dumping logs and analysing them, sounds like Unix to me.
Once they'd done that they rebooted it and carried on. I only got 17 seconds this time....

The Radiographer said they'd taken an image as well as doing the treatment, I'd better ask about that tomoz, the treatment was at 0815 this morning and since I'm starting to get tired after the treatment, I just wanted to head home to bed....

Apparently the treatment doesn't have much effect until the second week any way.

Soz it's a bit of a boring Blog, but I'm getting more tired.