Between RPLND and chemo

[benp]

Hello,

First a big thanks to the guys that run this forum. I've trolled through hundreds of posts and along with medline it's the best info I have found.

Anyway, I don't have questions or answers, just stories. Have been through the ever so delicately named Orchidectomy and the rather gnarly RPLND. Tomorrow I kick off day 3 rounds of BEP.

Here's the email I sent to my friends. Thought it might be interesting reading to someone.

: b

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Dear y’awl,

Update for all those who care to read.

The first thing to say is thanks for all your emails, goodwill, visits, presents, crosstown vibrations, cars, flowers, balloons, massages and so on and on. If it’s anything to go by they have been highly effective as right now things are as well as can be expected and honestly a whole lot more.

It’s been a while since the last email so the brief version of the medical update is this:

Went for the big operation. They sliced open my belly like a big trout and took out the lymph nodes from around the gut as this is where cancer likes to hang out (this type anyway). The operation took 4 hours and now I have a foot long scar which I will henceforth claim was a shark bite.

That kept me in hospital for a week. To ease the pain I was issued with a TV the size of a postage stamp and a little button which gives you a morphine hit on demand. I learned to push the button in my sleep until I discovered that morphine gives you strange nightmares. It’s a bit like a trip which all sounds really cool until you think about taking a trip with 43 staples in your belly, a catheter hanging out of your willie, a tube down your throat and someone wanting to give you a suppository every 6 hours.

I made it my mission to get rid of everything hanging out of me and be walking by the end of the week. The nurses begged to differ, that wasn’t nearly soon enough. At 9am the next day I was woken up and told “it’s time for a walk”. 12 hours after the operation finished, I kid you not. As it turned out I went for a walk and it wasn’t so bad. In fact, it was the start of one of the smaller realisations I will let you in on later, that being that if you want your body to heal, make it. If you let it lie in bed all day there is no urgency. If you go for a walk it will hurt at the time but the next day your body will have toughened up a little ready for another.

So, in short that lasted a week. There are some photos attached in which you will see I am not only telling the truth but I also have been very modest about not telling you just how stylish I looked while I strode the aisles of St George Private. Very Gucci-pooch indeed.

All of this was good news and the good news has continued henceforth. I can now power out an hour and a half of Sylvania Height and even dared a few steps of jogging yesterday. In all that operation is now getting toward being a memory.

There is however also some bad news. When they cut the lymph nodes out they found very little cancer spread. In fact enough that in ordinary circumstances they would have called it a probable cure and let me go onto surveillance. Alas, it’s not quite ordinary as they also found minute deposits in the spermadic cord which means the little bastard (as I now call it) had burrowed a small door out of the lymph nodes and into the bloodstream giving it an all new opportunity to spread just about anywhere. There’s no proof that is has spread, but the possibility is enough to warrant more treatment.

Net result: 3 rounds of chemo.

Chemo, for anyone who is a little shaky on the facts, involves pumping your body with chemicals that create free radicals. These free radicals kill cells as they divide. The first cells killed are the ones that divide fastest. Testicular Cancer cells fall into this category which is why cure rates are so high. Unfortunately your hair cells, blood cells and stomach lining also fall into the fast dividing category too which is why you go bald, throw up, can’t eat, feel tired, bleed easily and take on the ‘a cold can kill you’ immuno profile of an AIDS patient. Not great. People die from it.

The wonder drugs are given to you as an outpatient. You go to the clinic and literally book yourself into an easy chair for the week. Then you roll up for 5 days of 5 hours a day and let the heavy metals leach into your system by IV drip. There are 5 easy chairs in the room. I’m told standard protocol for addressing your fellow patients is “Chemosabe”.

After a week of chemo you get 2 weeks off. This gives your body time to recover while not giving the cancer cells time to take over. After these 2 weeks you’re ready to go again. That’s 1 cycle.

As I said, I have 3 cycles to get through, starting Monday. Feel for the other types of cancer patients who go through up to 8 cycles. If you’re going to say a prayer, make it for them. And if you smoke let it be known that lung cancer patients get the most rounds, all for a less than 50% chance of survival. A lot less.

For the numbers and for what they’re worth, I’m still considered to be a 90+ chance of full recovery.

So that’s the update medically speaking. More importantly right now though and if you’re interested I’d like to give you an update mentally speaking. As you can imagine I’ve had plenty of time to lie and think (with and without catheter) about life, death and the meaning of it all so here are my top 10 epiphanies all delivered in the hope that you may feel some of the gain without the pain or that if someone else you know should go through this then maybe you can have a little more insight into just what to say and do.

Wish me luck in chemo. More updates somewhere along the way.

: b

[benp]

Top 10 Epiphanies (Part 2 of the post)

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TOP 10 EPIPHANIES
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1. It’s a good thing.

This might sound absurd and I didn’t actually come to think it until this week but so far this experience is turning out to be a good one. I will put a disclaimer on this and say that I feel this way on the assumption that it all ends well. If the cancer turns terminal I think that will a lot harder to resolve and this list will become very different.

But anyway, even though there are plenty of tough bits and you will not always get this answer from me every time you ring, facing the possibility of imminent doom actually gives you a very clear view on what’s worth it in life. No huge revelations, I think that if any of you sit down and think ‘what’s really worth it / what’s not’ you can see life the same way. It’s just that suddenly that list becomes urgent rather than a ‘wouldn’t it be nice’ sort of thing.


2. Having a reason to live makes life a lot easier.

Imagining your own death is easy to do. It’s heavy, it’s simple, it’s clear. It evokes feelings of sympathy. Imagining getting through something like this is harder. Life has ups and downs and a whole bunch of OK bits which, while far preferable to dying, are harder to neatly box up and get a feeling from.

As such when you’re laying in a hospital bed with things hanging off you it’s easy to get a strong feeling from the whole death thing and hard to get a strong feeling off the back to life angle. I didn’t like that. It felt like I was dragging myself the wrong way. So I felt that I needed a mantra for living.

Annabelle it turns out has had one all along. For her soul to “feel the full range of human emotions, whatever they may bring”.

I’m not sure mine is quite so poetic but she’s had a lot more practice at all this stuff. Actually I stole it from the Birthday Book. My birthday is the day of the limit pushers. So I made mine, “to push life’s limits”.

These things may not mean much to you now but I can assure you that having a simple reason for being is an excellent counterpoint to stop a depressing experience from getting you down.


3. You can enjoy a crap moment.

I had a mate over the other day who is down and out about breaking up with his girliefriend. He was saying how he just wants the days of down and outness to pass.

I said that at the moment every day is a bit painful. I can’t stand up straight, I get sleepy, I get a sore back, I get random freak belly pains, I can’t run let alone surf, I can’t go for beers at the pub or any other particularly fun things yet I’m not wishing one of these days away simply because if this treatment doesn’t work, then these could be the last 16 weeks of my life. In fact, in spite of the **** I’m finding plenty of ways to enjoy these days.

Never wish your days away.


4. Pain goes.

If you’re ever confronted with a long process which involves pain know that your mind is kind enough to remove the fear along the way and therefore make it bearable. The first needle is as bad as any needle. After a hundred you couldn’t care less.

You simply become used to the concept and lose the fear. And the fear really is worse than the pain (unless you get a trainee nurse).

For the bigger pains distraction is awesome. TV is king. When you’re mind is on something else pain doesn’t exist.


5. If means FA.

One of the annoying things about this experience has been that the cancer has been just one little microscopic lump into a blood vessel meaning I have to do 2 to 3 times the treatment.

This can easily lead you to say, ‘if only that wasn’t there’. There’s also the classic, ‘if only I’d found it sooner’ or ‘if only Mike hadn’t kicked me in the nuts in Year 7’ or ‘if only I’d not worn my girlfriend’s really tight undies’. Hang on, scrap that last one.

Anyway, the point is I’ve learned to jettison ‘if only thoughts’ before they get past the if. They only take up time and energy that you really, really need for getting better.

It doesn’t matter why, just fix it.


6. Taking control is key.

Maybe it’s because I’ve spent a lot of time in bed with wireless internet and a lappy but I’ve made a point of finding out everything I can about this cancer and the treatments I’m getting. I’m talking days and days of research on every forum there is as well as medical journals, doctor’s Powerpoint presentations, and a whole lot more. It’s all available online and it’s all essential. I’ll tell you why.

For one, doctors have a habit of looking at the short term. Two treatments that have identical outcomes over 5 years will be considered identical. But look over 20 years and there can be a big difference.

For two, they don’t tell you everything and they don’t always think like you. When I asked one nurse about a drug that can cause lung damage she asked what I do as a job. When I said I’m a writer she said, ‘well what’s the problem, you don’t need your lungs for that’. I kid you not.

Three is the most important though.

When I first started this process I figured that the book was already written and I was simply going to watch the story be metered out. I figured the cancer was up to a certain point, that the treatment was going to work or not and all I had to do was wait and see.

That is actually bollocks. The more you read the more you learn that there are variations in every treatment and the more you you know the more the doctors are prepared to say, ‘here’s the options, the choice is yours’.

And the more you can do that the nore empowered you feel, like it’s actually you beating this thing.

And the more you feel like that the more relaxed and mentally strong you become which I am told and also believe is one of the traits of people who survive these things.

Mind over body, mind over matter and all that.


7. You’ve got to get down to get up.

Every time I expect good news but get bad news it gets me down. But the next day I’m used to the new situation and it all seems OK.


8. Lists suck.

If you write it down you just feel bad about not doing it. If you never write it down you still remember to do the important things and the unimportant things just disappear. Much better.


9. There's always someone worse off.

Always good to remember when things look crap. A quick walk around the hospital ward always confirms this.


10. You probably can’t do it on your own.

I’ve had an awful lot of help along the way. In fact I’ve been essentially a lazy bastard who focuses on nothing but this and how to get better. Me, me, me. As you can imagine this is a huge luxury only afforded by:

Annabelle having done a 180 from career girl to cooking, chauffeuring, massaging efficiondo;

Parents who do just about any annoying thing I ask;

A free room in a stylin’ house;

Friends (and parents again) who will finish your half renovated apartment for free (which in itself almost make the whole thing worth it).

If this ever happens to you, don’t be afraid to take everything that’s on offer. It helps big time. I do fear I will spend the rest of my life finding ways to say thank you.

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There you have it. 10 more insights next time if they happen.

: b

[Scott]

Ben, thanks for sharing your list (which doesn't suck ).

Sometimes I make a "to do" list and then pick at least one thing on it that I really want to do but would never get to if I did everything else on the list, and I make sure to do that!

[Chris'Mom]

Ben, I enjoyed your list....I think my son Chris should read it...he is a year out of chemo....good luck going thru the nasty chemo that will save your life...its well worth it....I was a little down today, but your list helped....Chris was down yesterday because of girlfriend problems, and I reminded him where he was last year, and he perked up a little...keep us posted how you are doing....Mary Ellen

[benp]

Thank's Scott and Chris' Mum

Chemo so far pretty much fine barr the mandatory needles and a few almost vommies.

In an irony i found writing that list to be good because now I feel I have to stick to it. I keep re-reading the pain goes bit.

Scott, I'm definitetly trying your list idea, love it (not that I'll be writing any of course)

Chris'Mum, thanks for your well wishes and best of luck to your son. So glad he's a year out, hope you both cheer up.

Off to the hospital to tick another day off the list

: b

[Chris'Mom]

We are all thinking about you.....soon all of this will be a memory....Mary Ellen

[Already Bald]

I was going through the archives and found this thread. I love it.
He even got my nickname joke!
Go through it quick, it's worth it.
Ben, are you still lurking??