Breakfast of champions

It's the morning after chemo started.  Most people are probably aware that chemotherapy is a combination of drugs, in my case it's intravenous and tablets.  I wrote yesterday about the TTOs, Tablets to Take Out, so I with that in mind I thought you'd like to see them.

There is a total of 238 tablets there.  You're thinking that's a lot of pills, well you are right.  Especially as this is for three weeks.  Twice a day for 21 days this is the breakfast and dinner of champions.  There are four types of drugs on that table, three are anti-sickness and anti-diarrhea drugs.  The rest, a total of  168 tables, of which I'll have to four in the morning and four in the evenings are called Xeloda, the commercial name of Capecitabine (Macmillan link here).  It is a chemo drug, the correct name for these types of drugs is cytotoxins.

Ladies and gentlemen, welcome to my breakfast of champions.  Poisons for breakfast, poisons for tea.

Jym

Oh, and I'll try and write some more later.

I want to write...

...but I'm not really there.

Whilst people in the UK were tucking into their lunch I was having parts of my body frozen to -5 degrees centigrade and having grade 'A' poisons flushed through my body.  Half a litre of Epirubicin (Macmillan link here), a litre of Cisplatin (Macmillan link here) in an astounding two and a half hours!  150 minutes.  That is what I was doing.  Hope you enjoyed your lunch, I really did not enjoy mine.

Afterwards I felt better but at one point, and I am not afraid to say it, I damned near lost it during the treatment.  I came so close to tears it took everything to not break down in the middle of the ward.  In the last two months there have been occasions when I've felt like that, but today was the closest.  And at some points over the last few days I have just felt so scared.  I am relieved today is over.  So far no problems, but only so far.  The hospital even had a specialist nurse in to take care of me today, that made me feel especially cared for.  But it doesn't ever take away the feelings inside.  More than one person has called me brave for how I am dealing with this, but I don't have an option.  I can't run away from cancer.  If I sit in a chair, the cancer is there with me.  If I go into another room, the cancer comes with me.  If I were to curl up in a ball with tears running down my cheeks to hide from it, cancer would be there in that ball.  It wouldn't care about the tears and wouldn't care that I was trying to hide.

Either way, I am home.  I have eaten.  I had a very small incidence of nausea, felt a little sick but it may be because I missed breakfast and no lunch.  It's nice to be home, I was only in hospital for a few house, but I really don't want to be.  I'm feeling lonely, but until tomorrow I can't do anything.

Tomorrow, it's the drugs at home, what are called TTO.  Tablets to Take Out (I kid you not).  I'll post a photo later, probably tomorrow, so you can see what I have to take, my chemo-take-away if you will.  In the meantime, I need to just switch off and feel the poisons in my blood.  Hopefully, sleep will come and there will be no tears.

Jym

Oh, and today was not a bad day.  It was as good as it could be.  A day to feel blessed.

Fingers crossed

Hopefully I'll write something more today.  But, it's chemo day.  Fingers crossed I'll be in a writing mood later, but if not...

Really never thought I'd be here again.

This has been hard to write.

Okay, Jym, back up.  That's the end of this blog entry.  It's not as bad as you think.  And I'll explain why.

Last night I went to Brighton and caught up with my friend Mel.  She's just moved there and to be honest I needed a night out.  Perfect.  The intention was to catch some music, sadly that didn't happen but much gibbering nonsensical conversation did.  I needed that,  So here is a picture I took of the lovely Mel in the Prince Albert underneath Brighton railway station.  Good pub and they have some excellent bands play there.

The lovely Mel who is not my wife.

Cheers Mel.  Needed last night.  Oddly she was once accused by the nurses at Eastbourne DGH of being my wife.  Yep, she should be so lucky!  (Cue Mel not talking to me.)

Now today was the first real hospital day where they did something.  And that was insert the PICC line.  What is a PICC line you ask?  (And even if you didn't ask, I shall pretend you did, so you get no say in this.)  A PICC line is a Peripherally Inserted Central Catheter.  Basically, it is a line that is inserted into the arm then goes into the body and is used for both giving drugs and also taking blood.  Here's the Macmillan page on PICC lines, if you want to read it.

Thing went in a dream, thankfully.  Took minutes to insert the line, a little painful but not too bad.  PICC lines are not used in every case and in 2010 I didn't have one.  This time I agreed it was a good idea with Joyce, my Macmillan nurse, before I even met the oncology staff.  I had so much damage to veins last time it makes life a lot easier.  After insertion there is an x-ray, this allows the medical team to confirm the thing is in place.  Spot on first time, so Tina and Joe who placed the line, a serious thank you for your excellent work.  Once it was placed I gave my first blood sample.  The amount of blood you give during chemo is astounding, but this was a baseline sample.  But, and wait for this, I wasn't allowed to leave until I'd had a sandwich and a cup of tea.  Why?  Well, not because I needed to build up the system or to replace lost calories.  No, it was because I'd earned by being a "model patient."  (Advice, here.  Do what they nurses ask and life is so much easier,)

Then a trip into town to buy a hot water bottle (in case of swelling on the arm, you put a hot water bottle on it to soothe the area) and a plastic sleeve to cover the PICC line when I shower.

Now, you're thinking, "Jym, you've written quite a bit!  How could it have been hard to write?"

Here's the answer.  I'm a left-hander and the line had to go into the left arm.  It's a little restrictive on movement, my arm doesn't bend properly  And for those of you who looked at the Macmillan link, here's what mine looks like.  I won't show it all, there is some blood and I don't want to upset people.  But it looks like this.

The line with gauze over it.

The end of the line!  (Boom!  Boom!)

So, when I said it was hard to right, that's why.  The line is in place and everything is go for tomorrow and the chemo.  Now that may be hard to write about.

Jym

Oh, the guys at work have pumpkins and are also running the New York marathon for the local hospice.  Here's photos of the pumpkin and the sign on the reception desk.

Until tomorrow.  Fingers crossed, eh?  And if you want to contact me, use the box on the right hand side.

Ground rules

So far today I have done nothing.  But I am supposed to going out this evening, so probably won't get time to write later.  Of course I have nothing really to write about from today.

A few people have told me they find this blog to be informative.  I hope it is, it was an intention of mine and a form of release.  Hey, not everyone is on Facebook, so it has to be a separate entity.  It also allows me to keep in touch with people and them to keep in touch with me, if they want of course.  But first an old photo.

Ignore the setting (well, blindfold) and let me explain.  This was taken during, I think, my fourth round of chemo in 2010.  The reason I've posted it is to show my beard, which apart from being whispy also had bald patches.  The hat was a necessity.  And this brings me onto the ground rules.

See, I will get ratty and angry with people during the chemotherapy.  It's not nice and what you  can see in this photo is an effect of the drugs.  I kept most of my hair but did lose some and my beard stopped growing and has bald patches.  This is why I want to lay down a few ground rules, but not in a malicious way.  Just so you know that there will be bad days.

So,here are some ground rules.

Please remember, if I don't want to talk about something illness related, don't push on it.  Mostly I will but cancer and its treatment are deeply personal.  There will be instances where I will back off.

Please don't ask me how I am?  As of now all days are either good or bad.  You can't say "I'm well" because you are not.  It's all degrees of sickness and with the chemo being vicious days are either good or bad.

I won't be able to forward plan for a while.  Every day is played by ear, so until this is over I don't know what I'm doing.  You can't, therefore, rely on me somedays.  Don't take it personally.

There will be some physical changes aside from hair.  I may lose my sense of taste and I did lose some skin from my hands.  There may be others.  They'll be temporary, but just be aware of them, okay.

Finally, this can be very lonely.  So please, don't be strangers but don't overwhelm me.

In the meantime, line tomorrow, which I will write about then hell on Earth from Tuesday.  All a bit nerve-wracking, but been here before.

Jym

Oh, and I have these!

Yes, lots of jelly beans!

I'm going in and I may be some time!

Just to say...

...if I've offended anyone today, I'm sorry.

Today I did nothing.  Not sure why, but I did nothing.  Maybe it's a mood thing.  Okay, yes something happened in the last couple of days, not that I want to talk about it, yet.  But it's put me off a bit.

The trouble is, when you have cancer like mine, you can't feel.  You can't taste it.  See it, hear it or smell it.  You don't know how you are and you don't know what is going to happen.  Try thinking about this, you can't plan when you don't know how you're going to be in a years time.  Even if you'll be here in a years time.

Yes, morbid.  But tomorrow and what is left of the day are the last days of 2013 that can be filed under the word "normal".  Monday, whilst not a chemo day, is the prep day for the poison.  The fun is Tuesday.  And with that in mind, I've ended up in this odd mood.  On a plus, I'm not at work this weekend.  I had planned to take it off, not because I wanted to do something but because this weekend is murderously busy.  So silver lining with not working.  But I digress.

I'm not on a downer, not sad or depressed.  Maybe a little miserable, possibly just annoyed, but not down.  Not even angry.  Just...something.  Here is my hope, that in 10 years time I look back on this as an unhappy episode of my life and that I can forget it.  But that's the future, hopefully.  Right now, it is just today, tomorrow, Monday, poison.  And with any luck there will be a future.

I'll write more tomorrow.  In the meantime it is bonfire night in Hailsham.  I'll explain about that later.

Ciao for now.

Jym

Oh, and this...

...because I get the feeling that "not a good day" may become the norm very soon and for a long while.

TGI Friday?

There was very little I like about Fridays.  Used to be the beginning of my working week so it was never looked forward to.  But not now.  Well aside from being on sick leave, as I have been for the last two months or so, but my rota rolls thus not a big deal now.  But there is something that still confuses me that does happen on Friday and it is this.  The Eastbourne Herald comes out.

Let me explain.  I actually don't live in Eastbourne but just outside in a town called Hailsham.  If you don't know the place, look it up.  Actually, don't, it is horrible.  But I work in Eastbourne, have lots of friends in Eastbourne and shop in Eastbourne.  And it has a pier.

The pier, obviously.

Now, the local paper for Hailsham comes out on a Tuesday and is essentially the same as the Eastbourne local that is published on the same day.  Thus on a Friday people also buy the Eastbourne local that comes out the same day.  With that in mind, I thought I'd share the front page story with you.  With strikes in schools, closures at the DGH and, I am sure, a plethora of other events occurring locally, here is today's!

Important local news!

Words fail me!  But this is genuinely the lead story today.  I'll let you make up your own minds on this.

I have to confess, I am getting a little nervous about the chemotherapy.  Partly because I don't know whether I will have any side-effects but more about the effectiveness.  Don't want to say why, but with medical professionals, well doctors, apparently not playing straight with me I am apprehensive.  The Macmillan people have been great and all the nurses are brilliant, but the specialists and consultants, well, not so much.  A lot to consider and sadly wonder about.  This weekend I shall ponder, consider, think, then swallow it all and get on with it.  My last weekend before poisoning begins.  We shall see what we shall see.

Enjoy Friday, mes amis!

Jym

Oh, and here is a picture of my mate Jack studying International Relations theory.

See, he does work!

Good to see a friend I can talk to who has similar academic interests.  Cheers mate for the chat this afternoon.