Tuesday, September 13, 2016

Cancer Q&A: Part 1

[Transcript kindly provided by Ivan Vanzaj and Osama Seghol]  


Hi this is cancer update video number 3.
I've just had my second dose of chemotherapy, the side effects are starting to
kick in. They usually come two days after you've finished the chemo, so I'm
recording this on Tuesday evening Tokyo time, and I had my chemo Saturday
4 o'clock I think, so it's 48 hours, so that finished on Monday 4 o'clock,
and it takes two days for the poison to get out of your body.


The reason I'm hiccuping a lot is, it's one of the side effects. Actually it's
not a side effect of the chemotherapy; it's a side effect of one of the drugs
that you take to minimise the other side effects [laughs]. One of the very
common side effects of chemotherapy is vomiting. Because I have very low vomit
threshold which means I vomit very easily, I've been given the strongest anti-
vomit drugs before, during and after the chemotherapy. And one of those drugs'
side effects is persistent hiccups, which means hiccups that last over an hour.
At the moment the hiccups are not painful, they're just very annoying. Last time
when I had the hiccups I had very very extreme pain because every time I
hiccup...  (some acid damage happened in my oesophagus, but that acid damage
seems to have healed up). As you can see I've got a skin rash. That's not a side
effect of the chemotherapy. That's a side effect of drug that goes along with
the chemotherapy to help it work better. That skin rash is from my first
chemotherapy which was two weeks ago which was much much much worse than it is
now. It was, 24 hours of pain, terrible burning pain. I couldn't even sleep.
Yes, gash on my head is just because I just had to take very strong pills last
night that made me dizzy, and I fell over and gashed my head open which is not


This video is just going to be questions and answers really because lots of
people have asked me very good questions. So, it's going to be in random order.
I'll do my best, I know I'm speaking fast; I may slow my speech down a bit to be
clear especially with these hiccups. I haven't got the camera in a great
position either.

So, my friend Emily asked how am I feeling, and what was my life like before
getting the cancer diagnosis?  I'm feeling okay, really; physically anyway. I've
got these side effects. At the moment the only side effects I'm getting from the
chemo, as of this side effect today is like nerve damage in my mouth and tongue,
lining of my mouth, gums and teeth.  Which means if I have a cold drink it's
very painful. That kind of thing. I don't know why my lip looks odd, but other
than that I'm feeling physically okay.  Emotionally, I don't know, I guess I'm
okay as well [laughs].  I literally don't remember a lot of my life before
cancer. The memories have just been eclipsed by all of this. At the moment my
life is cancer 24 hours, really.  When I'm awake there's always something cancer
related going on.  It's quite an effort just to take care of myself on a daily
basis.  Especially making sure I eat and I drink enough. I need to hydrate a
lot.  Especially after the chemo. It might possibly help flush out the chemo,
stuff like that.  I don't know if that's true for my chemo, but it will
definitely flush out some of these anti side effect drugs. Just to give you a
very rough idea; days immediately after chemo, I'm taking 24 pills spread over
three days, different pills.  A lot of stuff, really.  So getting it flushed out
of my system is going to be a good thing.  So just remembering to take the
pills, I have to write a diary of the food and drink I have, and when I have it,
because if I don't, I often just don't eat because when I get hungry I
emotionally don't have an appetite. So thanks for that question Emily. Emily is
a dear school friend. Recently got back in touch with her after being out of
touch for 18 years, really. She's been lovely, she's made a couple of sweet
videos for me. I hated school, and she was one of the people who made it
bearable for me. So I really appreciate her friendship so much. It was just
great to get back in touch with her. And she seems to be doing really well, has
lovely kinds and that kind of stuff.


My friend Angela asked a lot of good questions, some of which I'm going to
answer in this one and some in a later video.
One thing she said: What support that I've been getting means the most to me?
That's a difficult question because I've been getting a lot of support, and it
all means so much! The thing that really means a lot is people watching these
videos, and if you can comment either on YouTube or when I post them on
Facebook, and if you can share these videos, that's really good.
The biggest practical support, which I said in a previous video, is when people
write on Facebook or elsewhere that they've donated to the cancer fund. Because,
melodramatic as that seems, that cancer fund is a chance for me to either buy my
life, can help me live quite a bit longer. Or, if it doesn't, it will still
probably improve the quality of my life because it's paying for immunotherapy
that boosts your immune system. Chemotherapy destroys your immune system.
So anything that boosts my immune system would mean I'm less likely to get the
infections that cause a lot of problems, cause people to stop taking
chemotherapy sometimes. Whenever anyone writes on Facebook they've made a
donation I see their friends or family members making other donations, who
don't know me, make other donations. So the donations, obviously is the
financial support, but also every time I see a donation it makes me very very
happy.  Because it's just amazing people, especially people I don't know.  You
know, donating their money. It's just incredible. So that's helped a lot, the
messages help a lot, the comments on Facebook help. I've generally been very
anti-Facebook in the past [laughs], but at the moment it's been a huge thing. My
family are not such a support, because it's very tough for them. They're
going through hell as well. They often feel there's nothing practical for them
to do.  My kids are a huge support because my son, who is 7, Edwards, he does
understand what's happening. He does understand I might not be around for a lot
longer. So, he has been very supportive.  My daughter Jessica, she is almost 3,
and she just continues regardless. And that's fantastic. She's full of energy,
and she's been growing up very very quickly.  That's lovely to see, especially
her language skills.


Angela also asked about, and also other people: What are the do's and don'ts for
when you have cancer?  I'd say the first big kind of thing you must do, if you
have a friend or family member with cancer, is tell them this: "You must be
clear on what your situation is. Really really ask the doctor questions, proper
questions, write them down before you go into the meetings because your mind
will go blank regardless of how clear headed you usually are."  When I was going
into the first meetings, I would write 15-20 questions down.  Literally sit
through, and tick them off when I asked, and wouldn't leave till I asked them
all. And the doctors, at least the UK doctors are very happy to answer all the
questions. And most of my Japanese doctors have been happy to answer the
questions as well.  And I write down their answer, and if I feel like I don't
understand them, I ask them again.

It is so clear to me that a lot of people with cancer do not understand their
diagnosis.  They don't understand like, what it really means, what cancer they
exactly have, they don't understand things like when cancer spreads from one
place to another, you don't have a second type of cancer. You've got the same
type of cancer in another place. So, I originally had bowel cancer that has
spread to my liver. I do not have liver cancer. I have bowel cancer and secondary
bowel cancer of the liver. Now the reason that is so relevant is because when you
tell people you have cancer of the liver, they might say: "Ah, I heard about
this great treatment, blah, blah, blah...", and you look into it, and it can't
be used for you because you don't have liver cancer. You have cancer that has
spread to the liver. If you have breast cancer that spreads to your lungs, it's
very different from having lung cancer that's caused by smoking or something
else, and it spreads somewhere else.

Very very important to understand the staging. Currently cancers are divided
into 4 stages.  Different aspects of the cancer, especially spread, are given
different stages as well. So understanding the staging, you know, stage 1 -- very
early stage cancer. Many many stage 1 cancers can be cured. Stage 2 -- I think
that means its spread locally in that organ. Stage 1 cancer might be one tumor
in the lung, stage 2 might be several tumors in the lung. Stage 3 -- it's spread
outside of the lungs, but still kind of local. Stage 4: it's spread to distant
organs. My cancer is stage 4. A lot of stage 4 cancers are terminal; meaning they
can't be cured.  Some stage 4 cancers, if you have chemotherapy, they can shrink
down the tumors enough, and even some of the tumors in lymph-nodes might even go
completely, and it could change into early stage 4 or even stage 3 or even
curable. You can have a cancer start at liver, spread somewhere else, and the
chemotherapy shrinks it down enough that you have liver surgery and have your
cancer cured, which is fantastic.


But if you did have or told you have cancer or family friend or member has
cancer, understand that when you reading about other people talking about their
cancers, especially if they have miraculous cancer cures; all that stuff is
basically nonsense. It almost always comes from them not understanding their
cancer.  Also not understanding the treatment they're having, and the purpose of
their treatment because it's very different to have treatment that is curative --
so they are trying to cure you. Or treatment that is trying to slow down a
cancer, maybe (unclear, helped by?) other treatment options. Or treatment that
is designed to stop the cancer coming back. So someone has chemotherapy, and
they're able to have surgery, they're often told to have more chemotherapy
because, it really does you a lot of good because it prevents cancer from coming
back. So you often hear these miraculous stories of someone saying: "I stopped
my chemotherapy because the side effects are so bad, and I went for a natural
cure and started chewing wine leaves or some nonsense like that, and I'm now
cancer free". Well, that person, their cancer is cured by the surgery, and
helped a lot by the original chemotherapy, and the doctors as a preventative
measure were recommending more chemotherapy which the person refused. And often
people who have their cancer cured by surgery, for some of them it doesn't come
back without having chemo, which is fantastic. It has nothing to do with chewing
wine leaves or whatever nonsense they come up with. So, when you read this stuff
on the internet, it is just nonsense.


So, thank you so much for listening. Please
go to the fund raising page and make a small donation if you can because it
makes a huge help for me. Okay, thank you for listening, please share this video,
and please leave a comment. Thanks!
Part 2 of this Q&A is here: http://karamoon.blogspot.jp/2016/09/cancer-q-part-2.html
[Transcript kindly provided by Ivan Vanzaj and Osama Seghol]  

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