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/)