Shrunken Lump

Well it sounds like it could be the name of a 1970's horror film, or kung fu movie, but no it's about my relapsed lymph node.

Saw my oncologist on Monday and he said my lump had reduced to 1.2cm.  To put this in context, it started at 1.8 (when I was diagnosed as relapsing), then grew to 2.4 (by the morning of my first chemo session) and now in my first scan post-chem it's back to 1.2cm.  So for me that's a result and I am very happy with where it is up to.  Hopefully it'll shrink some more and my next scan (6 months time) will show that.

One slight wrinkle is that it is still above the magic threshold of 1cm, and as such my notes have been referred to the surgical team for them to decide whether or not it needs to be removed.  My suspicion is that they'll leave it alone, at least until after my next scan.

So from my naive position I am back on surveillance and that's a result.

Now the only big-C left to worry about (at the moment) is Christmas... :)

Well I've not posted for a while, and that was deliberate. A month-or-so ago I finished my chemotherapy and since then I've been trying to get my life back to normal.  To that end I had a couple of weeks "light duties" working from home, and then it was back into the office (Mon, wed and Fri the first two weeks).  I have to say being back at work has been great, even though they are under a great deal of pressure at the moment (delivery dates rapidly approaching).

And overall I think I, and my family, have managed to achieve a reasonable degree of normality.  As the days turn into weeks, my body is slowly returning to normal (the chemo-poisons are leaving my system) and so now I do want to get back to things like getting fit again...

However there are a couple of wrinkles and they revolve around last Monday and tomorrow, as those are the dates of my post-chemo scan and consultation with my oncologist respectively.  Now, over the past few weeks I've managed to put a lot of this chemo/cancer business behind me; yes it's still fairly prominent in my thoughts, but not as much as it was.  Well that was until last week and now, it's right back up there at the front of everything I do...

I am happy to confess I am nervous about tomorrow, probably the main reason being the little "ache" I had in my left-hand abdominal area that started just before my relapse was diagnosed is still with me.  To me, both are related and therefore if the ache is still there then (regardless of the success of the chemotherapy) the lump on my lymph node is still there and that means an operation.  It could be that these to things are not related, but in my mind they are, so I am expecting the news "Well the lump is still there, when would you like to be operated on..." and the fallout, in terms of telling family and work colleagues that there is another twist in my cancerous tail.

So I'll sign off, go to bed and await tomorrow's meeting...

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!

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!

2010/09/18 - Day 18 of 63, hair today...

Not much to say today.  I am feeling really well at the moment.  I put it down to the booster jabs and my immune system coming back.  But I feel better (in myself and physically) than I have since the diagnosis of my (little) relapse.

Something I noticed a good week ago was that my hair had stopped growing; I tend to wear "designer" stubbing and short hair, and usually when I am stressed (and I have been stressed) it grow pretty quickly.  Well I think I've only strimmed my stubble twice since starting chemo.  That said it hasn't yet started falling out, and I had read that somewhere between 10-14 days it would.

That said, if does come out if you give it a little "tug" and the funny thing is - is that there is no feeling of the hair being pulled, it just comes out...!  I don't want you to get the wrong impression, I don't sit here, rocking in a corner pulling out handfuls of hair like some deranged thing from an old black-and-white horror movie.  It's just that I have been curious as to if it will, and when it will, fall out.  Some day soon me thinks...

2010/09/17 - Day 17 of 63, I didn't swoon!

Yesterday was day 17, which was my third short of bleomycin (second as an outpatient).  This time around, my sister came with me, which was nice because (according to google) it's a 350 mile round trip for her!

She came up on the Thursday and we had a good meal together, then Friday we (she!) drove to The Christie, stopping for coffee and a sandwich on the way, in the sun.

Once there I had a different chemo-nurse, but the same problem.  She huffed and puffed and her first attempt with the cannula she said, "Oh, I've come up against a junction, sorry...", so it was out with that one and try with my other wrist!  At least this time I didn't faint!  And probably the reason for that was that (from the results of my blood test) that this time around I had/have a "good" white blood cell count (10.something) and platelet count (22.something).

The actual bleo was fine and everything (other than the "up a junction" episode) worked well, and no booster jabs this week...

Now I am looking forward to Wednesday, the start of cycle 2!

2010/09/15 - Day 15 of 63, feeling good :)

Today I feel good.  I'm still not sleeping well, but I did sleep better last night, and today... well still a dizzy head, but overall - good.  Also (counting chickens a bit) my girlie looks like her cold was just a "24 hour" thing, so fingers crossed.

Not much else to say today (which I guess is how I'd like this to stay).

2010/09/14 - Day 14 of 63, 2 weeks down, but a cloud arriving...

Today is the end of the 2nd week of my treatment (hurray) and I am feeling tired but pretty good.  There hasn't been much to report over the past few days, basically I've been trying to get on with the day job (from home) and keeping out of the way of humanity.

The "cloud on the horizon" is my little girl.  I went to pick the kids up this afternoon and she's as white as a ghost and sneezing like goodness knows what.  So that means she's got a cold and the means... well let's just hope these booster injections I've been having are doing something!  Fingers crossed...

2010/09/10 - Day 10 of 63, I swoon

Well day 10 wasn't the best day!  After having such a good day 9, I thought I was climbing back towards a level of normality.  To be fair the day started okay, we took the kids to school and then off to the hospital for my second week bleomycin.  So far so good, got to the hospital in good time, got set up in a little room, and then...

The nurse made a bit of a fist at getting the cannula in, well she got it in but I wouldn't bleed... so she huffed and puffed, and I fainted!  I put it down to not sleeping, stress and all sorts, but the next thing I knew was that I was lying down and a face (Ken) was over me saying "everything was fine...".  Eventually they managed to get a new cannula in and get my bloods done.

And the bloods came back with with (as the nurse nicely put it) "less than zero white blood cells" and a very low platelet count.  Anyway after a phone call to the doctor they hooked me up for my bleomycin.  The doctor came to see me and decided that I could/should have another course of booster injections and that I must keep an eye on myself (temperature).

I have to say I went home feeling "ill" and crashed out straight away.  That was fine, except I woke up over cooked in bed with my temperature varying from 37 - 38, which is too high for a man with no white blood cells. So this set me on a bit of a monitoring panic.  However after getting out of bed and slowly "doing stuff" my temp stablised in the low 37's, and after some tea and gentle TV watching it was down to high 36.

I didn't like fainting (actually I didn't know much about it), and my wife said I was snoring!!

2010/09/09 - Day 9 of 63, a letter to the head

Today has been a good day:)  It's the first day since treatment started that I've managed to feel almost "normal".  I think that's how this chemotherapy goes - in peaks and troughs, and am hopefully in a good position for tomorrow's bleomycin.

And because I've felt better today, I actually managed to do some work (small steps), but it felt good.  Sadly the quality of my work isn't/wasn't great, but the fact that I am wanting to do something is, I think, good.  Now if tomorrow works out okay, I might even be able to finish something workwise that other people in my company need!  I did spend sometime yesterday and today on the phone to one of my colleagues and it was clear that he enjoyed today's conversation more (I was pretty pathetic yesterday!).

As for the title of this post well the kids went back to school yesterday, so this evening I've had some homework to do - write a letter to the head explaining my situation and how it might affect the kids.  I am hoping that new school year will just be too exciting for them and my "blip" in health will be something that, for them, goes unnoticed.  That said the school do need to know, because they need to understand if/why my children's behaviour changes over the next few weeks.

2010/09/08 - Day 8 of 63, a whinge

It's day 8 - that means I've been through a whole week of this chemotherapy treatment, so that means only another eight to go... (hopefully).  It's been a very interesting week for a number of reasons, I believe I am handling the situation very well, but it is very definitely a different type of handling to both of my original diagnosises (I can't spell).  I wonder whether/what I would have felt like if I'd been initially diagnosed as a stage 2.

When originally diagnosed it was a case of just getting on with it, get operated on and recover (okay first time round there was some prophylactic radiation) but recovery was quick.  Radiation wasn't pleasant, but I managed to keep a normal life going (work in the morning, radiation in the afternoon and home), also the immediate side effects weren't too bad (just so long as you took it "easy" and had the anti-sickness meds).

But this time, well may be it's because of how run down chemotherapy makes you feel, perhaps that's the issue.  I spent most of my hospital visit full of adrenaline, and the same the first day(s) home. But now... well the adrenaline has gone and I just feel "ill", you know the type of thing, where you feel much better after a steady day and a decent night's sleep...  I'm waiting for the up turn, and currently feel like there is no energy anywhere; my head feels "muzzy", my hearing periodically strange, my hands and forearms "odd" and my stomach feels unwell and my taste, well lets just say that everything tastes of stale medicine at the moment!

I think what really annoys me is that I am usually pretty/very stoical so this level of patheticness(?) is something I don't enjoy.

Right I feel better now after that whinge, time to logon to work and see if there's anything I can do...

2010/09/07 - Day 7 of 63, take two nurses...

I am, currently, on daily injections to boost my immune system (this is a hangover from last year's radiotherapy as it also effected my bone marrow).  These injections are subcutaneous, but because I am pathetic I haven't been strong enough to self administer and so one of the community nurses comes around.

Yesterday (day 7) two of them came and the second one was the nurse who took (15) staples out of last years operation wound...  Okay 15 might not be that many, but the scar is only 3" long... and a good number of those had somewhat healed over before their extraction, I remember them well...

Other than that not much to report, I felt very knackered and my body (upper arms and scalp) has erupted in spots as my body "runs down" (nice...)

2010/09/06 - Day 6 of 63, a busy head (take 1)

Today is Monday, and should be a work day.  However I am allowed a bit of time to regroup, that said my head has been overly busy today - lots of angst and little focus.  Hopefully that will settle down over the next day or to.

In a quick email from work, it looks like there is loads of work to do (which is fine), for September (which will be interesting), still if I can contribute a bit then so much the better.  That said, tomorrow might just be a totally lazy day, as today I feel more tired than I'd hoped :(

2010/09/05 - Day 5 of 63, Where's my nurse?

Day 5, not much to report other than the district nurse didn't turn up for a long time.  Well she didn't turn up because of the fax being sent to an office that is/was shut at the weekend.  That said a bit of chasing up and a nurse was found and the first injection was done.

2010/09/04 - Day 4 of 63, Home Time

After a good night's sleep it was home time. Pick up my prescription and sort out what is/was happening next.  Not without some wrinkles... It transpired that I should have had a white-blood-cell-booster injection before I left, but the nurse misread(?) and I didn't read(!!) the packet.  Also she faxed through my community nurse appointment for the other injections (to a number that isn't available on a weekend!)

Anyway no real worries, just a taxi back to my folks, cup of tea and off home.  Very nice to be home and see the kids and dog again.

2010/09/03 - Day 3 of 63, Urine Factory!

Day 3, not much to say about day three really.  Looking at the schedule I could see only one infusion required so it was somewhat surprising to me that they said it could be 16 hours worth!!  How can this be I thought.  Well it's all down to fluids.  Don't forget that the drugs they put into you are not pleasant and have a whole host of side effects.  And one of the things the nurses are very keen on is just how well your body can get rid of the excess drugs.

I recall reading that Cisplatin (and I am pretty sure the others) isn't well absorbed by the body and most of the drug is expelled as waste - urine.  So what the nurses want to know, and take a healthy(?) interest in is how much urine you are making.  This is one of the reasons for all the saline - get the waste drugs out of your system, and fast.  Now when reading on http://www.tc-cancer.com one of the most important ways you can help yourself is to drink a lot, and then drink some more, and some more...  Just get those kidneys working.  Now I drink a lot as it is, so this is/was more of the same.

The funny bit for me today was that every time the nurse comes to take away your bottle/sample they replace it with another empty one.  Well I started the morning with a nice pyramid of empty bottles and then was pretty much left to my own devices.  So what are you going to do?  Being male, hooked up to saline and drinking water until it comes out of my ears, there's nothing to do but fill the bottles up - it's a personal challenge!  Because the nurses were busy I ended up with my own version of "6-grey bottles sitting on the wall".  The poor nurse who finally sorted me out was somewhat overwhelmed!

Joking aside - you have to help your body through this process.  Most of what goes on is internal so you can't "fight" in the traditional way, so just do what you can to help - make pee while the sun shines!!

Today's fusion:

1. 1 x Etoposide - 1 hour
2. 3 x Saline - 12 hours

Actually it could have been 2 - 4 x saline, with the two last infusions being "optional" dependent upon whether I'd been sick or not.  Thankfully I hadn't (the anti sickness drugs seem to be working) and so I could have dropped 3 and 4.  However given that I couldn't go home until Saturday they decided to give me the third bag, on the premise that more flushing is better than less.  That all said, it was very nice when my cannula was removed at midnight.

2010/09/02 - Day 2 of 63, I am exceptional!

Day 2 started in an interesting way, when having Chemotherapy the doctors are concerned with what other medication you might be taking (especially herbal stuff) as it might effect your regime.  Well I forgot to mention that I am on TRT, so I mentioned it to a couple of the nurses through day 1 and eventually (after breakfast) one of the SHOs came in to find out what I was on and why (well you'd have hoped after reading my notes he'd have had an idea).  Anyway the TRT is fine (as I'd thought), so onwards and upwards.

Day 2 is the big day, where you get all three drugs infused:

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

There was a bit more excitement during this day's treatment as the first Cisplatin went through a "bit" quicker than it should have done.  After a discussion with the chemo-ward nurse they agreed it was okay, I also checked up with my oncologist when he did his rounds and he said that it was okay - just a bit more stress for me!

I also started with a dry tickle cough early evening, luckily this disappeared after a couple of hours, but another thing to keep me interested in what's happening.

Other things that happened to day, my wife visited in the morning - lovely, and my folks in the afternoon.  Sometimes you've got to appreciate that it isn't just about yourself, okay (for me) clearly it is, this is a big thing for me - TC can be a killer and as such needs to be treated appropriately, but there are other people (family) affected.  So to spend time with them is good.  My wife, I think, is coping okay and we had a good couple of hours.  And the afternoon with my parents was good, and I think very good for them.  Seeing me sitting with an infusion in clearly isn't great, but seeing me as just the same person I've always been, I think was.  I think that really helped them (particularly mum) come to terms with what's what.

As I said in a previous post I think I am somewhat compulsive, and part of my self-therapy is externalising my knowledge - I am a TC-bore.  Whilst talking things over with my parents and explaining yesterday's question and answer session, my dad said that my behaviour, wish for knowledge, understanding and calm appreciation for the situation I/we're in is exceptional.  Thanks dad :)

Interesting questions

I think I "suffer" from a slight compulsive disorder - I like to know what's going on.  When first diagnosed with TC last year, I spent a lot of time researching what it was and what happens next.  Then this year, when diagnosed a second time (unrelated pure "chance") I kind of did the same.  This year's TC was deemed more suitable for an observation protocol, on the 80% chance that the operation sorted everything out, sadly not the case which is why I'm on BEP.

On day 1 my oncologist came to seem me and talk me through what was happening (we'd had a very good conversation a couple of weeks earlier so this was more of a reacquainting process).  He asked whether I have any questions for him, well yes I did...

Q1: How should I describe myself?
Before my relapse I considered myself as a with a stage 1 teratoma.  However I have now relapsed, so when I talk to people, how should I describe myself?  For example if I was being diagnosed "today" I'd be diagnosed as a stage 2A teratoma.

A1: There is no formal medical term for "me"
The staging is determined at the point of diagnosis.  So from that standpoint I am, and always will be, a stage 1 TC teratoma.  However since then it has relapsed, so you can use one of two descriptions: "a relapsed stage 1 teratoma", or a "stage 1 with metastasize") as they both describe me.  But it would not be correct to say I have  a stage 2 TC as that was not the case when diagnosed.

Q2: Is there a difference in survival rates between "stage 1 with mets" v "stage 2a"
Well this is part of the crux isn't it?  Are my survival chances better/worse for being a stage 1 with mets or a stage 2?

A2: Interesting question, not sure if there is any official research on that on
Basically the oncologist, rightly, sat of the fence here.  He wasn't aware of any specific research into that question.  Yes there is (plenty) of research about survival rate between stage 1 and stage 2, but not specifically of relapsed stage 1.


In my simplistic world, obviously the initial operation didn't resolve the problem (i.e. there must have been cancer cells left in my system), so I'd have thought that I should look at the stage 2 results.  But statistically I am a stage 1, and the results/research they have there will include not just stage 1 patients, but also stage 1 with mets.

Q3: Europe v USA - two different protocols, why are they different and which is best?
From my research there appear to be two different protocols for stage 1 with mets/stage 2 treatment and they differ in order of events.  In the US they adopt for surgery (RPLND), surveillance and possible chemotherapy, whereas in UK/Europe they adopt chemotherapy, surveillance and then RPLND.

A3: Two different cultures, but the end result is about the same
The US has always been more pro surgery and so have over the years adopted this approach first.  Now the RPLND surgery is complex and you need a specialist to do it right.  This is a self-fulfilling prophesy - because the US has performed a lot of these operations, they've got more of the skilled surgeons.  But the surgery is risky - don't cut out all the lympth nodes and it's possible you'll have a relapse; do the surgery incorrectly and you could inhibit the sexual function.


In the UK/Europe there are not as many skilled surgeons, apparently there are two where I am being treated - but that's the exception.  And because of this Europe has tended to go the chemotherapy route first.


All in all a good conversation, and more knowledge for me.  As I said at the outset, I think I am somewhat compulsive, so more information means more control.

2010/09/01 - Day 1 of 63

September 1st was the start date for my treatment.  I had a final CT scan just to confirm that my tumour had grown (from1.9 - 2.2 cm).  This first day was long; it took time to have the scan, time to get various forms authorised, time to get the chemo-drugs.  All of that, plus a lot of self-induced adrenaline made for a busy day.

By lunchtime it had been confirmed that my treatment should go ahead, by 16:30 I'd finally had a conversation with my oncologist's senior registrar and signed my consent form.

Finally the moment I'd been waiting(?!) for happened - 18:00 and with my cannula attached to my left forearm it was time for the first chemo infusions:

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

Just the 9 hours to start with, which took me through until 03:30 in the morning.

Cycles of Chemotherapy treatment

Having been diagnosed as having a relapse (not a nice phrase) I have been set up with an appropriate chemotherapy protocol called "BEP - 3 Days".  This is basically a number of three week chemotherapy cycles (in my case, I believe, three cycles of three weeks).

The BEP protocol specifies three chemotherapy drugs: Etoposide (the "E"); Cisplatin (the "P") and Bleomycin (the "B") each of which combine to disrupt (and kill?) the growth of cancer cells and in particular testicular cancer.  There are other protocols for TC and other cancers, but I'm on BEP.

Each cycle of BEP is split into three hospital trips:

1. Three days as an inpatient (lots of infusions)
2. One as an outpatient (one infusion of bleomycin)
3. One as an outpatient (one infusion of bleomycin)

Now clearly the above can change depending on how the drugs affect the patient, don't forget these are pretty powerful "poisons" and as such have a goodly number of side effects that need to be monitored (more about that later).

But for now, my understanding is that I am having 3 x 3 weeks of treatment - 63 days.

DoubleZeroAmI but I was IAmDoubleZero

Due to a slight mishap (between blogger and my supposed email account) I can no longer access my original blog on this subject (*sigh*).  Still rather than fight over that, I've decided to start a fresh (as I hadn't posted much to that other site), so it will just have to wither on the vine (possibly quite apt really).

So this little blog will provide an insight into my progression to being cured of testicular cancer.  Feel free to read, reflect and learn what you need.  Obviously the stuff I'll be posting is mainly to do with me, I've no medical background, so don't take anything verbatim.  But if I provide a bit of insight for someone then so much the better.

Enjoy
  DoubleZero (once of http://iamdoublezero.blogspot.com/)