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 :)

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.