Don't judge books by there cover...

Today's bleomycin was dealt with by a male nurse called Jim.  Jim is enormous - think of a nightclub bouncer in an ill fitting Tuxedo and you won't be far wrong.  But his cannula skills... brilliant.  No pain (well hardly) on the stabbing bit, and definitely no pain on the pulling out bit.  Utterly brilliant - couldn't ask for more, oh yes I could, sadly no foot massage today... but I'd rather no pain than pain-plus-sensual Julie!!

08/10/2010 Day 38 of 63 - I don't need a lecture!!!

Today has been interesting, I haven't posted for about a week, but that's good - because I've nothing to say (about my "favourite" subject...)  Basically this last week I've been on my white-blood-cell boosters, the (quite dreadful) cold I got seems to have gone, some residual could-stuff but no big deal.  So I've been working a bit from home, and basically feeling altogether better/happier with my lot.

Today, being Friday is bleomycin day, so what should have been 2/3 three hours at Christies.  Well firstly, and most importantly, bloods were find and bleo was administered - so result.  What I didn't mention last post was that I got myself a week's prescription of sleeping pills.  These are/were a means to an end - I have not (other than with the aid of drugs at the last Christies "stop over") slept at all well.  And I know why - it's the chemo-drugs, it's my body;s reaction, it's my over adrenilised body and mind.  And I know that sleep is very good for you, and given everything that's going on in my body at the moment probably even more important.

I also know that you shouldn't become dependent on things like sleeping pills.  Well hey, I know that, and currently they are a means to an end.  And also with my week's supply I tried a couple of nights of not using them - to see if "Mr Busy Head" would let me sleep, it didn't so the next night I took one.  I like to think I am somewhat of a responsible adult.

Now today, maybe because the Bleo ran late, may be because the consultant didn't hear/was busy, but they didn't sign me up for a second week of sleeping pills.  So by the time 15:00 came around and my missus (and me) really need to get back home/to the day job, it became clear that even if/when they did give me a prescription it wasn't going to get fulfilled very soon.  So I rang my doctors, got an appointment (16:30) and told the nice Christies people that I'd get my GP to do it - job done, or so I thought.

Got to the GP's on the stroke of half past.  Got to see a GP (not mine, one of the locums, I think) and told him that as a means to an end I could do with a 7 day prescription for these sleeping pills.  To cut a story short he gave me the prescription.  But, and a big but, did I get a lecture on the "evils" of sleeping pills and how there are other ways of helping me (like anit-depressants!!!???!!!) and if I need any more then we really should think about something else... and then went on to write a longgggggg note on my records about this whole event.

I was staggered, given that I am 6 weeks in to chemotherapy (and that's a whole load of nasty drugs that can screw your brain and body up with), and that I've had to cancer operations and radiotherapy.  And that all this is in/on my notes.  Did it not occur to Mr GP that I might actually know why my brain is "busy", that I am in control of myself and know why I want the pills and why/how I should use them.  What I don't need is an inappropriate lecture about their evils and I sure as hell don't want to go the anti-depression route - and that certainly isn't appropriate at the moment given where I am up to...

I like to think I handled it in a mature and sensible manner, but it was a close run thing...!

02/10/2010 Day 32 of 63 - Half way through!!!

No post for a while (a week?) well that's been deliberate, in some respects.  This last week (since coming home from my three day inpatient bit of cycle 2) has been truly awful.  I thought in cycle 1 I hit "rock bottom", and that pre-warned I'd get through the "bad patch" of cycle 2 better with the knowledge that it'd be better soon...

Well, in short - no!  This week has been a real low point.  The weekend wasn't too bad, but I knew I was also cooking up a cold.  Come Monday and I was very unwell - no temperature but very rough, and this lasted pretty much until Friday morning when I felt decidedly better (my missus would disagree and said I still looked dreadful, but I did feel much much better).  So I put Monday, through Thursday down to a very bad experience.  I even rang up the Christies emergency chemotherapy hotline (aka lifeline) to make sure that this cold wasn't too serious.  Thankfully it wasn't, just a virus and as long my temperature stayed okay just grind it out...

So four/five days of racing pulse (somewhere around 120 bpm, when it used to be 60-ish), splitting headache (yes I could take paracetamol but that would mask any temperature issues) and very little sleep (waking up every 1.5 hours and taking an absolute age to get back to sleep).  Yes I am a male, and perhaps the above is nothing more than standard "man-flu" but last week was very, very hard...

Now come Friday morning, I feel a bit (much!) better.  Still got this cold but feeling like the worst is past.  Now my big issue is am I well enough for my date with a bag of bleomycin?  Thankfully the answer to that was... yes and Friday at Christies was a better experience.

Better for three reasons, firstly I had the drugs, secondly the nurse got the cannula in in one go (big result) and third, because I was so very stressed about the whole thing I got a homoeopathic foot massage from the very sensual Julie whilst being cannulaed and waiting for my blood results...

So now onward and upward.  And today is another big milestone.  If my maths is correct I'm now halfway through - just one more three day session and three more bleo-outpatients.  Oh and I am feeling on the up!

25/09/2010 - Day 25 of 63, the joy of sleeping pills

Over my second three day stint at Christies I discovered the joy of sleeping pills.  They were on my medication list for my first cycle but I didn't use them (hind sight say probably not the best decision).  This time I did.  Now I am not one (ironically given what's happening to me) that likes taking pills of any sort, but sometimes they do help!

Last night was a case in point.  22:00 arrived and it was time for my saline to be removed, and no need for the additional eight hours of saline as I (still) haven't been sick (big result there).  So I was looking forward to my cannula being removed and a good night's sleep.  However, the nurse got distracted (wanted to do my obs but couldn't find a blood pressure cuff) so went hunting.  Now she didn't come back for a while and whilst away I started hearing a really distressing/harrowing call from one of the other rooms.  A repeated, quite agitated, "nurse... nurse... I need to know what that light means... nurse... oh somebody...".  This went on for a few minutes.  Initially I ignored it, because I thought somebody would go and see to him, but after a few minutes it was obvious that that wasn't the case.

So I took my empty drip trolley for a walk to go and see if I could find the chap a nurse.  Passing his room was really quite distressing - he was old and frail and in a somewhat debilitated way, not nice to see really.  Anyway I loitered around the nursing station, and it just so happened that all the nurses were busy (mine was one of two dealing with someone else at the time).  I did finally find someone and they explained that he was basically delirious from his medication and his situation.

Eventually my nurse came back, sorted my cannula out and asked if I was okay (because she saw me by the nursing station).  I explained why I was there and she understood (and I think appreciated the "neighbourly" concern).  Finally I asked for the evening's sleeping pill, because I didn't want to listen to the poor chap through out the night.  And that in some ways made me feel guilty, I don't class myself as self-centred, yet sometimes you just need to rest and ignore those you are in a worse situation than yourself.  It doesn't feel comfortable, but I am glad that I went and checked on him, but more so (and this is the guilty bit) I am glad the sleeping pill worked!

24/09/2010 - Day 24 of 63, Cycle 2 end of the second three dayer

Well today was the last day of my second inpatient visit.  In terms of drugs:

1. 1 x Etoposide (1hr)
2. 2 x Saline (2 x 4hrs)

Today's excitement has been should I/shouldn't I have booster jabs!  Well this became one of those on/off/on sagas.  Yesterday the consultant said yes, then this morning the chemo nurse said yes, then the pharmacist came to see me and said no definitely no, and then at 17:30 my consultant came to see me and said yes I definitely need them and the pharmacist is on the case.  And by 18:00 a different pharmacist came to say my drugs have been done and are in the fridge!

Now why was this "exciting", because I rang my district nurse in the morning to set up a weekend appointment, then lunchtime I rang up and cancelled it, and then 17:30 I rang again to set it up again.  But... the fly in the ointment is that the district nurse(s) stop answering the phone at 17:00, so I rang my GPs and have three choices: 1) go to the local A+E, 2) ring NHS direct, 3) ring NHS out of hours!  Why?  Because my district nurses don't work weekends, it's another group!  Now I don't really want to go to A+E because I currently have a paranoid attitude towards people that I don't need to see given my immunity system (and A+E is full of ill people...), so tomorrow will be another day of phone calls... It shouldn't be that hard, should it?!

Anyway, I feel tired but okay at the moment.  Saline finishes at 22:00 and then sleep without a cannula, and home tomorrow :)

23/09/2010 - Day 23 of 63, Catching up with a friend

Forgot to mention, my missus went for some R&R yesterday (Amsterdam I believe) with some friends.  This was a bit of a quandary for her, because she (obviously) didn't want to go with me in "here" and felt guilty.  But I (and her parents) persuaded her that it was for her best (and my best) that she got away from it all.  I am bound to be pathetic when I come out from there, as I was last time, so she'd better get some rest now, whilst she can!!

But because she's worried about me being lonely, I managed to hook up with one of my swimming buddies from my last job (new job beginning of this year meant I've not swum this her for ages).  Also she is my "platonic swimming soul mate".  Anyway it was lovely to catch up, chat about old times, talk about cancer-stuff (I do that a lot) and other bits and pieces.  Made my day that did.

As for the treatment, well day 2 of the cycle is a bit of all meds:

1. 1 x Bleomycin - 30 minutes
2. 1 x Etoposide - 1 hour
3. 2 x Cisplatin - 4 hours
4. 1 x Saline - 4 hours

The other bit of day 2, is that I got the wifi password and spend loads of time working...:)  Actually I think I spent too much time working as today I feel completely worn out (but still won't stop me doing some more after this).  I am conscious that we have work deadlines and the "team" needs me (I like to think so) and also I am pretty sure that next week I'll want to do bugger all, so I'd better do what I can, when I can.

All in all a very good day.  Sb seeing my friend really hit home how important friendships are, and (not withstanding my current situation) how I love my "new" job and changes that it's enforced, but I do miss our little (elite) swim club and the people who are/were there.  But life moves on...

22/09/2010 - Day 20 of 63, Cycle 2 here we come!

Bit late in posting, but Wednesday was a bit of a long, rushing and racing day, and not the day to distract the nurses with "what's the wifi login".

So what happened well again they failed to get the bloomin' cannula in first time.  Perhaps I pressured the nurse with my descriptions of the last to bleos but he started and them mentioned (now often used) words "oh I've hit a junction, sorry...".  Anyway, I decided to lie down for the second attempt (no point risking it I thought) and he finally got that one in!

And then a long day of meds... finally finished at around 01:30, which was better than cycle 1's 03:30!!

For those of you that don't know, the first day of my 3 day cycle involved:

1. 1 x Etoposide - 1 hour
2. 2 x Cisplatin - 4 hours
3. 1 x Saline - 4 hours

I went to bed around 23:00 (with 2+ hours of saline to go) couldn't sleep and had a very busy head (full of useful work thoughts).  Anyway by 01:30 I'd had enough so when the drip was removed I asked for a sleeping pill, never had one before - magic!  All I remember was thinking another work thought and then bang, morning!