Transcript of
Coping with cancer
It's such a difficult moment.
I mean, it's so frightening, so emotionally disruptive,
to have a cancer diagnosis given to you,
unlike almost anything else you can think of.
Shocked, really shocked, and I don't think I realised how serious it was.
It was like somebody had kicked me in the backside.
That was the only way I could describe the shock.
Cancer was something that happens to other people, not you.
I wasn't really in control of what was happening to my body.
I wasn't sure about how I was going to be ultimately.
I immediately saw the blackest, blackest scenario.
I was just like, "This cannot be happening," really.
That was really gutting.
As soon as they found out, they started chemotherapy almost straight away
because I was that bad.
It's not all being done to you. You have rights and you have choices.
Yes, you have a right to a second opinion
and for some people that is helpful,
to go and check out whether another doctor or treatment team
would advise the same things.
Often in retrospect patients will say, "I wish I'd asked this beforehand,"
or, "I wish I'd known this was going to happen."
And so what you have to do is try and tailor the consultation
to who's sitting in front of you.
When you go and see a doctor,
you have a set of questions that maybe form in your mind.
But when you get there, half of them go out the window and you kick yourself.
There are two things you can do.
One of them, if it is something important, is to have somebody with you
that can be a second pair of ears.
Take somebody with you who isn't going to burst into tears
or isn't just going to go, "Oh, my God, what's going on?"
I didn't care about anything other than I was going to lose my hair.
I was completely obsessed with it. It took over everything
and I just wouldn't listen to anything other than,
"Can I keep my hair? When will it fall out? What day? How will I know?"
Whereas my colleague would ask the really important questions
about the length of treatment and the real effects of what it's going to do.
Secondly, take a notebook with you with your questions and tick them off
and maybe even jot down the answers as you're being told.
Because when you're in a state of trauma, and it took me a good month,
I didn't hear anything good.
All I could hear was the bad.
And there is no question that is too silly to ask.
It can be very little things like,
"How do I talk to my children? I don't know what to say."
"What about my salary?"
"How am I going to pay the mortgage if I have a year's worth of treatment?"
Sometimes that's what the nurse specialist is helpful for.
They're often very attuned to these other kinds of questions
and can often be very good at making it feel comfortable.
The doctor said, "You're going to have a transplant. This is how it will be."
But when it came down to it, I actually asked the nurse to explain it to me
because she had seen people go through it so many times,
and her explanation of the process
was actually better for me to understand than the doctor's one, to be honest.
We've got a huge increase in the number of specialist nurses
who have got the time to spend talking to you about the cancer.
Whatever questions or queries you have, do not be afraid to ask.
If you need something, shout and shout loud.
Don't be afraid to ask. It's their job.
I didn't know you could have sleeping tablets.
I'd gone through six weeks in and out of hospital, suffering.
Sometimes you're so sick you can't even read.
The more chemo you have, it's accumulative,
so you get more and more and more ill.
In the end I didn't want anyone to come to see me.
I just took sleeping tablets and slept for the best part of three days.
That's fine, you can do that. They'll go with what's best for you.
I found it difficult to know when I wanted to talk about it
and when I didn't.
And quite often the question was, "How do you feel?" and I felt fine.
Although it's a habitual response, that was the answer.
Other times one felt a little as if one wanted to talk about it
and others weren't asking you the questions.
Certain communities just won't discuss it,
which is unfortunate because one of the ways people with cancer get support
is that their friends and family are helping them.
Some societies think it's contagious
and therefore I'd pass it on to my spouse.
And so these are things which they wouldn't necessarily want to ask
in a kind of white-coat, starched hospital environment.
And the health professional that's dealing with them,
not knowing the cultural background,
won't think to ask about certain issues,
and that's where community-based organisations are very useful,
because people feel that they can ask these questions.
People don't know what to say to you,
so they say, "Look on the bright side. You'll be fine."
"Keep positive, keep smiling," and all this.
There are days when you certainly don't feel any of those things,
but you find your own way, your own strength,
your own way of coping with things.
I had a lot of friends, a lot of support from friends who were very helpful,
and they would all help in different ways.
Sometimes somebody would say,
"Don't worry. I know you're going to get better."
And another person would give you more of a counselling, listen to you.
And a third person might say, "Let's look at the worst, what could happen."
People start thinking that you can't wash up
or you can't put a pizza in the oven.
"We must do it for you, Amber. Lie down."
It's like, "OK, I feel a bit ill, I feel a bit sick,
but it's no worse than a really chronic hangover."
That's what chemo's like. Imagine having a hangover for nine weeks.
So you can still do stuff.
Upset stomach, headache.
"I'm not sure what I want. Don't want to lie down. Don't want to eat."
So I think people can get the wrong idea and think that you're incapacitated.
I go onto a forum now. I help a lot of people going through the same thing.
When they post about their darkest days and how they're so depressed
and they feel like they'll never get their lives back
and, "I'm never going to eat again."
I just try and say, "There is light at the end of the tunnel. It gets better."
"You might not believe it now but it honestly will."
"You'll look back and be able to say the same."
If I'm a survivor, then what do you call those who actually didn't make it?
It sounds as if you've got the strength to make it and the others haven't.
I don't really like to see myself as a survivor.
I'm just... It was just a chapter in my life, really.
Cancer has an enormous impact on people,
but there is life after cancer.
There's a whole network of people out there to help,
whether it's in your treatment team, your GP,
in the community, your friends and family.
They're there to help. You can get through it.
Focus on that and go and ask for that help.
