9 weeks of BEP - what it meant to me...

Okay, so the drugs are over... and for all intents and purposes the (BEP) chemotherapy is over.  Something might need to be done later, or it might not, but I'll worry about that later - get the scan and results first then worry about what's next.

So this little post is a kind of review of the whole (my) BEP process.

9 weeks of treatment:

• 3 x 3 days as inpatient for all drugs (weeks 1, 4 and 7 Wednesday - Friday)
• 6 x 0.5 days as outpatient for bleomycin (the other weeks, on Friday)
• 1 x CT Scan (on the day of starting treatment)

30 bags of chemo-drugs:

• 9 lots of Etoposide
• 9 lots of Bleomycin
• 12 lots of Cisplatin

Other drugs:

• 13 lots of saline (because I wasn't ever sick, or else it could/would have been a lot more)
• 9 lots of hydrocortisone (one before each bleomycin)
• 15 lots of steroids (each 3 days as inpatient and then the following 2 days)
• 15 lots of strong anti sickness pills (each 3 days as inpatient and then the following 2 days)
• 20+ lots of "normal" anti sickness pills (as and when at home)
• 30+ lots of sleeping pills (though I am now weening myself of them)
• 20 lots of G-CSF immune system drugs

Needles:

• 9 cannulas (one for each hospital visit)
• 17 attempts to get the cannula(s) in place (including the "successful" ones)
• 2 additional bits of needlework (for bloodwork)
• 1 fainting fit
• 3 foot massages
• Many litres of urine manufactured by me (one of my best achievements!)

Side effects:

• 3 x chemo-cold (in hindsight, the end of each inpatient resulted in a "chemo-cold" that lasted for 4 - 7 days)
• Hair loss (they said this would be total, but for me (at least so far) it hasn't - lost most, but not all of my head-of-hair (kept the grey stuff!), lost my bread/stubble, lost my pubic hair and lost a bit (calf area) from my legs).
• Dry skin
• Strange eczema bits on fingers and toes
• Fat/arthritic fingers (periodically)
• Pins and needles (fingers and forearm)
• Tinnitus (occasionally)
• Rubbish sense of taste
• Really bad sense of smell (almost everything smells awful)
• Racing heart rate (pretty much always between 80 - 100 bpm - even at rest!!??)

Other stuff:

• 1 additional x-ray
• 1 additional bloodtest
• 1 mortality on the ward

Phew, looking at the above - it's a bit of a list.  And I'll be the first to admit - the whole process is pretty crap!  But then we are dealing with a very unpleasant subject area, aren't we?!

Now I wouldn't wish the above on anyone.  But if you've got to have the treatment then I'd simply say - get it done!!  It's not pleasant, but (at least for me) the 9-week cycle seemed to fly by.  I didn't (don't) enjoy the side effects, but not everyone gets them and not everyone has them at the same degree of severity.  The key stage for me was getting past the second chemo-cold, that signified the coming end of the whole process.  And now were (I am) here!!

Regardless of scan results, there's still a long way to go.  But that's just how it has to be.  I'd done (had done) what was needed, lets hope these heavy duty poisons have done the trick...

Take care

  DZ

ps - I will be back...

29/10/2010 Day 59 - The last drugs

Today's the day!  The day of my last administered BEP drugs...  My final bag of bleomycin!  And as a cerebration(?!) those nice people at The Christie really speeded through the whole process.  They were really busy but somehow everything was done-and-dusted by, what, 13:30!

They somehow have me down on the notes as "pathetic male" when it comes to the cannula part.  Admittedly I don't much like that bit, and admittedly I did faint on the first bleo outpatient appointment - but there were mitigating circumstances, and it did take them three attempts.  Anyhow, because of this they still managed to find me a complementary foot massage lady (Joanne).  Sadly she didn't arrive until after the cannula, but that meant that I could just enjoy the indulgence!!

So that's it for treatment.  My oncologist came in  for a quick chat and we (he!) booked me in for my CT scan and follow-up visit at the end of November/beginning of December.  So those are the dates to look forward to.

26/10/2010 Day 56 - This is work calling

Yesterday, after some self imposed exile, I logged back into work and found a stack load of emails to deal with (amongst other things).  Given that I've been out of action for 8+ weeks now it is quite amazing to see just how far the old place has progressed since I last got in touch.

One email in my list was from the boss who (and I quote) said:

"Excuse the less than tactful approach, but when are you going to be back working again... 1st Nov, 8th Nov..."

Now given the amount of support I've had from work (the boss) he can pretty much be  as tactless as he likes - he has been little short of amazing during this whole process.

We had a couple of emails on the subject and basically as/when my immune system is sorted.  Actually there is a bit more because he (and I) want to get back to working ASAP.  So today was my first day "back", well in terms of working from home - but actually working.  It is good to be doing something rather than just clock watching for the next set of drugs, or the next day of the process!

Friday is the last set of drugs (bleomycin) and hopefully 8th November sees the proper return to work.

23/10/2010 Day 53 - One bag to go!

Yesterday (22nd Oct) was Bleomycin day, and went without a hitch.  I got to the hospital (quick stop at Costa Coffee for a brew and a cake) on time and they were (unlike the last outpatient visit) really quick.  I've obviously been there a lot, because I knew everyone of the staff this time around.

Shortly after being shown to my "room" sensual Julie arrived and was straight in with a foot massage - very nice, and totally distracted me from the cannula experience!  (Which I have to say was probably the best cannula incision that I've had to date).

Bloods came back fine and I was off...  Not only that, my immunity injections (and sleeping pills) came back within half an hour, so the whole thing went like a dream...

Back home, kids and dog spending the night at the in-laws, feeling much better (on the up after the chemo blues) so last night was pretty good as well.

And now (next Friday) just the one bag of poison left to go... :)

21/10/2010 Day 51 - Back to normal

This last week I've done nothing.  Actually not quite true, I've done very little other than feel unwell and waiting for the up turn!  Last night (slightly earlier than expected?) the "upswing" started and today, whilst still a bit "off colour" I feel okay - just in time for tomorrow's Bleo... which is the last but-one... hopefully.

Not much else to say, this down period wasn't as bad as cycle 2, but it wasn't great.  But the fact that I knew I'd been through the worst one helped.  Probably the worst part of this time was yesterday, when I had my first "flash back" through the whole process (thinking this time last week I was hooked with another six hours to go).  It was my first, and only flashback so far and it took a bit of the wind out of me.

Still, only two bags to go and then we start the next part of my life...

15/10/2010 Day 45 (part 3) - Death on the ward

Let's just cut to the chase - cancer is crap and it (can) kill.

That was brought home this evening rather abruptly.  I (am lucky enough to)  have private medical cover and so am treated in the private ward of Christies.  One of the main benefits of this is that I have my own room - I don't need to interact with other people...  There are pluses and minuses of this, one big plus (for me) is that I can pretend that there aren't any other ill people around - but there are.

Ironically, even though I have a private room I prefer to have the door open - so I can see what's going on (and it really helps the air circulation in the room).  So it came as a shock when a mature orderly popped his head through the door and asked if he could shut my door (not usual).  I asked why (tactless when I worked it out)?  And my evening chemo-nurse said "oh it's just a couple of tests we sometimes run in the corridors".  She was clearly hyper so that was the end of the conversation, and she also shut my window blind (also unusual).

Then the penny dropped.  Pause... sound of trolley wheels going down the ward (left to right)... pause for a couple of minutes... sound of trolley wheels going up the ward (right to left)... pause for a couple of minutes... door/blinds opened by chemo-nurse.

Not much I could say, other than apploguise for being (in hindsight) rather tactless.

Puts it all in perspective again...

15/10/2010 Day 45 (part 2) - I miss my family

Today had two real low points (apart from the x-ray "panic", which could have been the third).  The first being that today's my little boy's seventh birthday and the first one I've missed.  He from the photos I received had a good one, and I had a phone call with him this morning... but missing my boy's birthday was hard.

Still tomorrow he can go through it all again when I get home.

15/10/2010 Day 45 (part 1) - Don't panic, but I did!

Friday (today) was exciting for a number of (not necessarily good) reasons.

Firstly as is usual one of the SHOs/ward doctors came to see me this morning once I was up.  I hadn't seen this chap before and he asked the usual questions (how are you today etc...) well I told him okay, except that in the shower I had to "clear my chest" (cough up some phlegm - nice!) three or four times.

And with that he was straight in there with questions like - was there any blood...  Then he was out with the stethoscope and listening to my chest.  And it was I'll arrange an x-ray for you... now.  And so starts some mild angst in me...  (I blame http://livethrivesurvive.blogspot.com/ - sorry Nick! who had a much more serious requirement of additional chest x-rays...)

I have 2 x-rays (back and side) then it's back to my room, and in comes one of the chemo nurses to take some blood from me (which they have only done before at the beginning of treatment - so that was unusual), and I feel my blood pressure rising.

And then... nothing... is that good/bad or what?!

Thankfully at lunch time my oncologist arrived for his weekly chat.  First question (onc) "how are you", first reply (me) "well I am somewhat anxious..." and I tell him about the mornings escapade.  This isn't (yet) in my notes so he stops me and goes to find out.  Thankfully (very much thankfully) x-rays and bloods normal... I'll put it down to the bleo of yesterday and the fact I'm just vegetating in a chair.

The rest of the conversation was very good, I'd come up with a list of a dozen questions/things I'd noticed over the last cycle, which he noted a few things in my file and answered the questions as well as he could.  Anyway I was basically happy as soon as he'd said the x-ray/bloods were fine!

13/10/2010 And so (hopefully) the last cycle starts...

My (hopefully) last cycle of BEP started this last Wednesday (13th October), and on the whole it's gone pretty well.  The main thing(s) of note this time around have been that I've been somewhat "hyper" for the whole three days. I think it's to do with the steroids, but I've noticed that almost all my conversations have had me in a somewhat intense frame of mind - barely letting anyone get a word in edge ways.

I did bring my laptop, in the hope of working through as I did in cycle 2's three day stay, but absolutely not a hope - my mind has been randomly uncontrollable and the last thing I have needed (this time) is actual work stress/concerns - so I've played the "sick note" and left them to it... also the Christies WIFI seemed to play up (honestly!) on Wednesday/Thursday - which was handy!

Other things, had lots of visitors this time - my folks (twice), my missus, my plutonic swimming friend, and a couple of other swimming friends, so I've been kept busy talking "at them"...

The treatment has gone well, it just takes so long:

• Wednesday (Etoposide, 2 x Cisplatin and 1 x Saline) was much quicker than last time, but still didn't finish until 23:45.
• Thursday (Bleomycin, Etoposide, 2 x Cisplatin and 1 x Saline) took until 01:00, Friday,
• Friday (Etoposide and 2 x Saline) isn't scheduled to finish until 23:45.

Luckily, I still haven't been sick, so don't require the two "optional" bags of saline (or another eight hours!!)

I've couple of other things to report/say, but will do that in a couple of other posts.

Oh, the last thing of this post - what is it with me and flipping cannulas?!?!?!  Poor old Dil (my chemo nurse on Wednesday) was the same nurse as cycle to who uttered the (now immortal to me) words "sorry I've hit a junction".  Had more trials this time.  Okay he got the cannula in first time (result!) but couldn't get any blood out of it - don't ask me why, the cannula is in a vein - so there should be some blood shouldn't there?!

Anyway try as he might, no go...  But and this was brilliant.  Instead of taking it out and searching for another one (vein) he asked if I wouldn't mind him using one of the "big" veins on the inner elbow for bloods?  Result says I, straight in there no pain/slight scratch/whatever and all the blood he could hope for!!

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!