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Managing loneliness during transplant - Brad's story

Episode 11

Brad had a stem cell transplant to treat Chronic Myeloid Leukemia (CML) in 2018.

He explains to Clare how his experience led him to set up Alike.org.uk, a community dedicated to combating loneliness among people diagnosed with cancer.

Full transcript

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Welcome to episode 11 of Anthony
Nolans Patient Services team podcast.
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I'm Claire and I am the patient and family
engagement manager here at Anthony Nolan.
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Through this series of podcasts, we
hope to provide you with different
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insights into the experiences of
having a stem cell transplant.
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We'll be looking at what life is like
before, during and after transplant.
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As well as talking with healthcare
professionals for advice and guidance,
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we will also hear from patients and
their families who will share their
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personal stories and experiences with you.
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We hope you find this helpful,
interesting and informative.
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Today I am joined by Brad Gudger,
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who had a stem cell transplant in 2018
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following a relapse from chronic myeloid
leukaemia. During isolation for his
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stem cell transplant, Brad formulated
plans to launch his own charity.
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Alike, Alike a charity with
the mission to combat loneliness and
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isolation in the cancer community.
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And their mantra is powered by friendship.
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This year, Alike launched
their very own app, an iOS and
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Android peer support platform.
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Brad also does some incredible work for
the NHS as a youth expert advisor, and
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recently joined NHS England's
clinical entrepreneurs program.
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I am so looking forward
to this conversation!
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Welcome Brad.
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Hello?
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Hello!
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Thank you so much for having me!
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How are you doing today?
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Absolutely glorious.
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How are you?
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I'm doing really well.
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I'm honestly.
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so looking forward to this, I
feel like there's so much to cover
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and I'm just really delighted
to have you on the podcast.
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So thanks for being here.
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Thank you for having me.
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Brad, you had a stem cell
transplant back in 2018.
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Can you tell us what that was like for
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you?
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Oh, a whirlwind, I think is
the only way to describe it.
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I think looking back, I
definitely asked myself, how
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did I actually get through that?
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The process was actually
very long, as well.
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I was told in August 2017 that
the medication that I was on, I was
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on a series of TK inhibitors, which
were meant to inhibit the growth
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of my cancer in my bone marrow.
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And sadly, it was meant to be a
lifelong treatment and sadly, it just
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didn't, it wasn't the right fit for me.
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It didn't work.
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My body didn't respond to it very well.
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After several attempts on
different generations of the drug.
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I was told by my consultant,
look, this is not working for you.
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So we're going to go down the curative
route, which is a stem cell transplant
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and a bone marrow transplant.
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Yeah.
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That was August.
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We spent the last part of the rest of
2017 looking for a bone marrow donor.
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And I think what I recall
from that experience was just
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the level of uncertainty.
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Yeah.
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And I know so many other
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patients and survivors that say yes,
having cancer is awful. Experiencing
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chemotherapy and treatment is awful.
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But the anxiety that is brought on by
uncertainty is really difficult to deal
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with, because there is nothing you can do.
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It takes away that control.
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There was a lot of anxiety.
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And stress pre transplant.
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So when I got the date of admission
to hospital had my bone marrow
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donor sorted, we went through a
bit of drama around finding the
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right bone marrow donor for me.
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Um, so we settled on my brother.
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My consultant decided that my
brother would be my donor, which was
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really special as well, actually,
whilst it was, yeah, really sad
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to be in those circumstances.
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It actually was a lovely way
of bringing us closer together.
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So I got my admission day and I knew,
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this is routine for them.
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I'm treated in Hammersmith hospital.
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It's a routine for them.
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This is your admission date.
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This is your chemotherapy regime.
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This is when we plan on giving you
an infusion with the stem cells.
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This is how long the process
will take, et cetera, et cetera.
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So as soon as I got that, the
anxiety levels came down and I was
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much more prepared, like, right,
let's do this. And more prepared
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for the fight really, but I think.
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Yeah, looking back.
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It's still that question of
how did I get through that?
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Just because it was such a long process.
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I was in hospital for two months
and I remember on day one thinking,
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oh, this is such a challenge.
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How am I meant to do this for 60 days, at
least. It was like, how am I going to do this?
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But thankfully I did.
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And retrospect, I'm just
very proud of myself really.
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Good.
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It
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sounds to me like what you were saying,
there is, it was so daunting and as you
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say, you know, There's that anxiety of,
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okay,
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How do I find a match?
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And it's going to be the
matching donor and then, okay.
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What does it look like now
that I go through that process?
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And then there's, you add onto that
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post-transplant where, you know,
you're in isolation, you're in
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hospital and that can be so daunting.
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And as you say at the time, you're
like, wow, there's still more to
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come. After a while of, as you say,
chemotherapy, and that other medication
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you were on, you're kind of like,
okay, the journey is still existing.
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I'm still on this, on
this road to recovery.
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And asking about myself, about like, how did
actually get through that.
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But at the time it's, 'well, you
have to!' there's nothing else.
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Like, the only solution is for
you to just get through this.
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You don't really dwell on it at the
time. But then in retrospect, you look
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back and go, wow, you got through it.
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Yeah.
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And I love that you said in a way of like,
I'm so proud of myself because I mean,
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it's no easy feat, you know, it's not
like you just kind of sail through that.
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I'm sure there was moments of as you've expressed,
you know, uncertainty and anxiety
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and then your brothers involved.
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And then you've got, you kind of,
as you say, you pass it over to the
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Hammersmith team, you know, your
hospital, your medical team to kind
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of put everything in their hands.
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So yeah.
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I'm glad that you're proud of yourself.
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And so you should be!
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You were a young person and you still are.
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Not to the NHS!
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The other side of 25 now so.
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To me you are young you're young!
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Um, but how did that impact your life
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at the time? Well it affects
every area of your life.
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Really.
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So everything. It affected my confidence.
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I had leukemia originally age 19.
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Right.
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And following treatment and recovery
and on a maintenance treatment.
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So I call it recovery, but
it felt like a recovery.
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It felt like I'd had a brush with cancer.
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I was on this meant to be lifelong
treatment and had really worked on myself.
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I'd worked on my, my physical
shape, and my mental health as well.
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Moving down to London and working in
different industries, creative industries,
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meeting incredible people, volunteering
for some amazing charities and just really
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expanding my network and relationships.
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When I got the news that I had to have
a transplant, it knocked my confidence.
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I'd worked so hard on my identity
and who I was and who is Bradley
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And this brought cancer right
back centre stage, which was
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just very difficult to deal with.
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And I know that's an understatement,
but what else is there to say?
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It is.
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Just a difficult period.
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Yeah.
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So it definitely affected my confidence.
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It affected my relationships.
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My parents were still living
in our family home, which is
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northeast England at the time.
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So there was that separation.
Like our son is in London going
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through this difficult time.
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What do we do?
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They wanted to be here of course.
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But how could they be logistics
was challenging working to
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try and find us a donor.
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Speaking with my brother who at the
time was in Leeds. Well actually, no,
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he was on the other side of the world.
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He was.
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Traveling at the time.
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So there was having to have that
conversation. There was my partner.
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I've been with my boyfriend for.
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Nearly five years now.
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So he was with me during that process.
And because of how I'd been with
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my original diagnosis, I always
refer to myself as a cancer survivor
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when that was technically not true.
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I was still a cancer patient because
I was on long-term treatment.
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Right, Yeah.
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But I always felt that it was so difficult
to try and explain to somebody that,
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yeah, I'm a cancer patient, but here
I am with a full head of hair looking
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quite slinky, going out to bars, going
to events, working long hours. living
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my life normally as, as a young person
living in London, but then having to try
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and explain to somebody I have cancer.
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Like I am a cancer patient, so.
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That meant that I refer
to myself as a patient.
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And when you tell yourself something
over and over again, and you're telling
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other people, you believe it, right?
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So I believe myself that
I was a cancer survivor.
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So I had to grapple with that ah
no, you are not a cancer survivor.
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You are now a fully cancer
patient and you are going to
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have to go into treatment again.
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So you're going to have to
deal with losing your hair.
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You're going to have to
deal with the fluctuation
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in weight, the change of your
appearance, the difficult days with
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your mental health. The loneliness and
isolation that comes with all of that.
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And then of course it affected
my personal development and
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my professional development.
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It can bring things more to a standstill
can't it because you, as you
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said earlier, you know, you've no
choice in the matter. There you were,
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you know, living your life, trying
to, you know, live a full, happy life.
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And then you're doing what
you can with your career and
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different kind of interests.
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And then.
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As you said, you know, previously,
it comes centre stage again, cancer.
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Okay.
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I'm on active treatment.
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Okay.
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There's been a relapse.
Now I need a transplant.
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It brings everything to a standstill.
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And that becomes your focus, which is
really difficult when you're trying to
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thrive, you know, as a young person.
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So I can imagine, I can imagine.
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Was it then, like after you had
your transplant, you know, that kind
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of recovery stage, how was that?
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Now,
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this is probably not very helpful
for other listeners, but my recovery
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actually went by in a blink.
Really?
Because I had something to focus
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on, which I will touch upon later.
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But I had this goal and I had this
energy that came from this project
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and this passion and desire.
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I wasn't thinking about
my recovery every day and the
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hospital appointments would.
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Come and go.
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00:08:51,405 --> 00:08:54,645
It would be routine popping into
the hospital twice a week to have my
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00:08:54,675 --> 00:08:58,215
blood checked, see the consultant, get
my medication, everything all good?
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Everything's all good! Off we go.
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And that just happened.
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00:09:01,215 --> 00:09:03,314
And then as time went
on, it was like, right.
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00:09:03,345 --> 00:09:05,115
Well, we're going to
see you once next week.
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00:09:05,115 --> 00:09:06,885
And then we're going to see
you once every two weeks.
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00:09:06,885 --> 00:09:09,075
And then it will be once
more, once every three weeks.
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00:09:09,075 --> 00:09:10,095
And that's when it started to get.
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00:09:10,219 --> 00:09:14,420
Wider and wider, that gap, which was really
good for me as well. To not constantly
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00:09:14,420 --> 00:09:17,780
be faced with hospital environments
and seeing medical professionals
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all the time, which is quite tricky.
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00:09:19,850 --> 00:09:23,209
So that meant that it went by in a
blink and it got to like September
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00:09:23,360 --> 00:09:28,209
when it was my birthday. I'm just,
oh my! Like it's September, isn't that so strange!
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Yes.
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Oh God.
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How did we get here?
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And then that's when the
reflection starts like, well, it
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00:09:34,240 --> 00:09:36,550
has been a turbulent time and.
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Just really setting in, again,
starting that journey of, okay,
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so who am I now without cancer?
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00:09:43,310 --> 00:09:47,690
So I got given the news that I was in
remission quite soon after my transplant.
240
00:09:47,690 --> 00:09:53,120
I got given the news in March towards the
end of March, um, after doing a series
241
00:09:53,120 --> 00:09:56,780
of tests and investigation and said,
yeah, you're in full molecular remission,
242
00:09:57,170 --> 00:09:59,570
which was incredibly emotional.
I'm sure!
243
00:09:59,600 --> 00:10:00,980
But then there was the journey of yeah.
244
00:10:00,990 --> 00:10:02,270
Helping my body recover.
245
00:10:02,415 --> 00:10:04,035
And my, my mental state recover.
246
00:10:04,045 --> 00:10:07,665
But as I said, being distracted
by a project and by a passion
247
00:10:07,665 --> 00:10:09,225
was really helpful for me.
248
00:10:09,465 --> 00:10:09,735
Yeah.
249
00:10:09,765 --> 00:10:13,814
September came along, it was like,
yeah, you don't have cancer anymore.
250
00:10:13,875 --> 00:10:16,785
Finally, you can say you
are a cancer survivor.
251
00:10:17,205 --> 00:10:18,135
You've entered that stage now.
252
00:10:18,165 --> 00:10:19,215
I've entered that stage.
253
00:10:19,245 --> 00:10:23,205
Cancer had been with me since
the age of 19 and I was now 25.
254
00:10:23,385 --> 00:10:23,745
Wow, long time!
255
00:10:23,865 --> 00:10:24,944
So it was, yeah.
256
00:10:24,975 --> 00:10:26,685
Who are you now, without cancer?
257
00:10:26,685 --> 00:10:28,005
Like, what is Bradley about?
258
00:10:28,005 --> 00:10:31,365
And that journey in itself was very,
very interesting because I had the time
259
00:10:31,365 --> 00:10:35,025
to self-reflect. I had the time to speak
to other people and I suppose that's
260
00:10:35,025 --> 00:10:40,155
given me a level of like personal and
I'd say emotional stability, like an
261
00:10:40,155 --> 00:10:43,875
emotional maturity, because I was able
to have that time of reflecting and looking inward.
262
00:10:44,555 --> 00:10:45,035
Exactly.
263
00:10:45,035 --> 00:10:48,185
And it says a lot that you have that
introspection, it's not just introspection
264
00:10:48,185 --> 00:10:49,415
in terms of that kind of factual.
265
00:10:49,415 --> 00:10:49,655
Okay.
266
00:10:49,655 --> 00:10:50,405
I've been through this.
267
00:10:50,405 --> 00:10:51,365
This is how it's been.
268
00:10:51,650 --> 00:10:52,310
But also, okay.
269
00:10:52,310 --> 00:10:53,240
What does this mean for me now?
270
00:10:53,240 --> 00:10:54,800
I am checking in with myself.
271
00:10:54,800 --> 00:10:55,190
Here I am.
272
00:10:55,190 --> 00:10:58,760
As you say, you know, I've had this
idea, this project, this exciting
273
00:10:58,760 --> 00:11:02,360
passion that I'm developing and I've
channeled all my energy into this.
274
00:11:02,360 --> 00:11:05,210
And that's then what kind of has led
you to the now. Which leads me to my
275
00:11:05,210 --> 00:11:08,990
next question about, you know, it's no
denying that you're so passionate about
276
00:11:08,990 --> 00:11:10,700
the importance of connecting with others
277
00:11:10,700 --> 00:11:13,790
when you're going through a cancer
diagnosis or any type of treatment,
278
00:11:13,790 --> 00:11:17,480
including a transplant. What was
your experience of isolation?
279
00:11:17,510 --> 00:11:18,770
And is this where you got the
280
00:11:18,770 --> 00:11:20,450
idea?
281
00:11:20,910 --> 00:11:24,450
For me. And we know that every cancer
experience is different.
282
00:11:24,840 --> 00:11:30,000
So I use 'for me' in the knowledge that
it was my circumstance and my experience.
283
00:11:30,060 --> 00:11:33,750
For me, loneliness and isolation at
times was worse than the treatment.
284
00:11:34,260 --> 00:11:38,490
And I'm so glad more and more
people are now talking about that,
285
00:11:38,490 --> 00:11:40,410
and talking about the experiences
286
00:11:40,525 --> 00:11:45,325
post cancer, because as Alike are
really keen on advocating; cancer
287
00:11:45,325 --> 00:11:49,225
doesn't stop the day you get told that
you're in remission. For so many people.
288
00:11:49,765 --> 00:11:52,765
And there's that feeling
of going off a cliff edge.
289
00:11:52,915 --> 00:11:53,125
Yeah.
290
00:11:53,155 --> 00:11:56,365
I'm glad more and more people
are now talking about loneliness
291
00:11:56,365 --> 00:12:00,355
and isolation because so many people
experience it, and the problems
292
00:12:00,355 --> 00:12:02,215
with cancer don't stop the day
293
00:12:02,405 --> 00:12:03,755
you get told you're in remission.
294
00:12:03,875 --> 00:12:04,235
Yeah.
295
00:12:04,444 --> 00:12:09,714
And this absolute maze and jungle of
living with cancer post treatment.
296
00:12:09,895 --> 00:12:13,944
And what support are you able to access,
and what is available to you now
297
00:12:13,944 --> 00:12:15,265
you're no longer a patient?
298
00:12:15,525 --> 00:12:17,185
Now you're a survivor. For so long,
299
00:12:17,185 --> 00:12:19,824
this problem was being
endured by people in silence.
300
00:12:20,005 --> 00:12:20,305
Right.
301
00:12:20,334 --> 00:12:22,824
So it's fantastic that people
are now talking about it because
302
00:12:22,824 --> 00:12:24,145
loneliness is a hidden killer.
303
00:12:24,395 --> 00:12:28,625
Yeah.
Loneliness increases
mortality by 26%, chronic loneliness.
304
00:12:28,685 --> 00:12:32,315
It is a killer, and compounded
by a cancer diagnosis
305
00:12:32,315 --> 00:12:36,335
it can be fatal and I don't want to sound
overdramatic, but it's such a problem.
306
00:12:36,365 --> 00:12:41,135
And it affects people's not only
physical health, but your mental health.
307
00:12:41,165 --> 00:12:41,735
And it's just.
308
00:12:41,935 --> 00:12:44,875
It's something incredibly
debilitating on top of chemotherapy.
Absolutely!
309
00:12:45,385 --> 00:12:48,925
So it's something that I've
experienced before cancer being
310
00:12:48,925 --> 00:12:50,485
a gay man in a rural village.
311
00:12:50,535 --> 00:12:53,785
It's something that I experienced
during my first diagnosis as a 19
312
00:12:53,785 --> 00:12:57,975
year old in a village with cancer.
Feeling completely separated from
313
00:12:57,975 --> 00:12:59,515
so many other people and my loved ones.
314
00:12:59,595 --> 00:13:03,195
Feeling lonely in London, even
though I had a fantastic group of
315
00:13:03,195 --> 00:13:08,375
friends, new connections, this vibrant
industry that I was a part of, that I
316
00:13:08,375 --> 00:13:10,295
feel like welcomed me with open arms.
317
00:13:10,325 --> 00:13:12,725
You can be in a room full of
people and still feel lonely.
318
00:13:12,785 --> 00:13:13,085
Yeah.
319
00:13:13,435 --> 00:13:14,015
So true.
320
00:13:14,165 --> 00:13:19,025
And then finding out I relapsed or the
cancer had come back or the cancer had
321
00:13:19,025 --> 00:13:23,015
become more aggressive and then facing
a bone marrow transplant in London.
322
00:13:23,105 --> 00:13:23,525
Yeah.
323
00:13:23,755 --> 00:13:26,425
Increased loneliness and then
being in hospital on my own and
324
00:13:26,425 --> 00:13:27,925
being isolated for two months.
325
00:13:27,954 --> 00:13:30,954
So loneliness, sadly has been
a thread in my experience.
326
00:13:30,954 --> 00:13:33,025
And I know it's a thread
for so many other people as well.
327
00:13:33,045 --> 00:13:35,324
It's a theme,
part of the experience.
328
00:13:35,355 --> 00:13:36,165
It really is.
329
00:13:36,285 --> 00:13:37,995
It's a, it's a side effect of
330
00:13:37,995 --> 00:13:38,625
chemotherapy.
331
00:13:38,625 --> 00:13:39,885
That's a great way to put it actually.
332
00:13:40,000 --> 00:13:42,910
Yeah, that's incredible Brad,
you know, it's so inspiring to
333
00:13:42,910 --> 00:13:45,340
hear that you went through that
experience and you started really
334
00:13:45,340 --> 00:13:47,680
thinking about isolation, loneliness,
335
00:13:47,710 --> 00:13:50,560
as you know, we both agreed, it is a
theme for people who are going through
336
00:13:50,560 --> 00:13:52,210
cancer, and going through a transplant.
337
00:13:52,240 --> 00:13:54,940
So that leads me into kind of, you
know, curious to hear your thoughts
338
00:13:54,970 --> 00:13:57,460
around social support and connection.
339
00:13:57,460 --> 00:14:00,130
We know that when going through a
transplant, that's so important.
340
00:14:00,190 --> 00:14:02,320
And my question really is
around how we would often
341
00:14:02,350 --> 00:14:05,170
encourage patients to reach
out to someone that they trust.
342
00:14:05,200 --> 00:14:08,050
You know, if they're experiencing that
isolation, that loneliness, you know,
343
00:14:08,050 --> 00:14:09,850
potentially per mental health as well.
344
00:14:09,880 --> 00:14:13,480
Is there advice that you would have
for those who provide that support?
345
00:14:13,510 --> 00:14:17,050
So any advice for any friends or loved
ones who may be listening to this?
346
00:14:17,400 --> 00:14:17,550
Of
347
00:14:17,550 --> 00:14:18,060
course.
348
00:14:18,120 --> 00:14:22,590
Alike's aim in the future is to
provide the Alike application for carers
349
00:14:22,620 --> 00:14:27,690
for loved ones, for people who are
experiencing cancer indirectly. Because,
350
00:14:27,810 --> 00:14:31,020
even though a loved one may have been
diagnosed with cancer, who's caring for
351
00:14:31,020 --> 00:14:33,630
the carers?
There you go.
Who was providing that support?
352
00:14:33,630 --> 00:14:35,730
So that's where we aim to go with this.
353
00:14:36,210 --> 00:14:38,970
But for now I think language
is really important.
354
00:14:39,870 --> 00:14:43,770
There's a lot of rhetoric around
cancer and whatever language and
355
00:14:43,770 --> 00:14:45,960
rhetoric people choose to use,
356
00:14:46,204 --> 00:14:49,775
in regards to cancer is very
personal, and some choose to address
357
00:14:49,775 --> 00:14:53,255
it in different ways. Such as, some
people like to call it the big C.
358
00:14:53,465 --> 00:14:53,765
Yeah.
359
00:14:53,855 --> 00:14:57,605
And again, for some reason,
it's about taking away that
360
00:14:57,605 --> 00:14:59,135
power that the word cancer has.
361
00:14:59,135 --> 00:15:00,454
So they refer to it as the big C.
362
00:15:00,454 --> 00:15:04,595
This is just an example, but for me, I
found the actually calling it what it is.
363
00:15:04,790 --> 00:15:07,579
Cancer.
Strips, stripped
that power away from it.
364
00:15:07,670 --> 00:15:08,510
It is cancer.
365
00:15:08,599 --> 00:15:10,280
It's this thing that we have to deal with.
366
00:15:10,280 --> 00:15:12,500
It's this awful thing
that we have to deal with.
367
00:15:12,770 --> 00:15:16,040
And it really allowed me to be open
and honest about it. Especially
368
00:15:16,040 --> 00:15:16,939
when I was going through it.
369
00:15:17,000 --> 00:15:19,370
I don't want to have to be worrying
about what other people are thinking.
370
00:15:19,370 --> 00:15:22,099
I don't want to have to be
considering everyone's feelings
371
00:15:22,099 --> 00:15:23,680
and emotions all the time.
372
00:15:23,680 --> 00:15:24,189
Exactly.
373
00:15:24,219 --> 00:15:25,420
Because that is draining.
374
00:15:25,420 --> 00:15:26,380
You have enough going on.
375
00:15:26,890 --> 00:15:27,339
You really do!
376
00:15:27,339 --> 00:15:31,030
So if anybody was to ask a question
where cancer would rear its
377
00:15:31,030 --> 00:15:32,740
ugly head, I would always.
378
00:15:32,930 --> 00:15:38,329
Be honest and say, this is why
you've got a two year gap in your CV.
379
00:15:38,359 --> 00:15:39,020
Why is that?
380
00:15:39,020 --> 00:15:43,819
Well, because of X. Like I
didn't date for X amount of time.
381
00:15:43,849 --> 00:15:44,209
Why?
382
00:15:44,239 --> 00:15:45,619
Because of cancer.
383
00:15:45,709 --> 00:15:48,560
And so it, I always gave it its name.
384
00:15:48,650 --> 00:15:51,949
And I think that's, what's really
important for carers, loved ones and
385
00:15:51,949 --> 00:15:57,199
friends. Is to be open and honest too. Their
feelings, whether that be fear, sadness,
386
00:15:57,199 --> 00:15:59,540
confusion are all completely legitimate.
387
00:15:59,569 --> 00:16:00,800
And I feel a lot of people.
388
00:16:01,320 --> 00:16:03,600
Say well, it's, it's their cancer.
389
00:16:03,600 --> 00:16:08,190
So I have to do whatever I can
to support that person. Put on a brave face.
Yep.
390
00:16:08,460 --> 00:16:09,540
Help them get through this.
391
00:16:09,570 --> 00:16:12,750
I can't be crying in front of them!
And it's, that's so respectable.
392
00:16:12,780 --> 00:16:17,280
That's so admirable that people do that,
but you have to do this together.
Yeah and
393
00:16:17,280 --> 00:16:19,260
validate your own experience
as that loved one,
394
00:16:19,550 --> 00:16:21,709
Or that friend, or that partner, you know,
you're going through this, on
395
00:16:21,709 --> 00:16:22,790
that journey with the person
396
00:16:22,790 --> 00:16:22,969
too.
397
00:16:23,060 --> 00:16:23,660
Absolutely.
498
00:16:23,829 --> 00:16:27,609
And, cancer is a massive
contradiction. From an experience.
499
00:16:27,640 --> 00:16:30,640
There'll be one day, there'll
be one morning where I'd go, I'm
400
00:16:30,640 --> 00:16:31,990
ready to speak in parliament.
401
00:16:32,020 --> 00:16:35,800
I'm ready to speak truth to power, to
change policy, to do this, to do that.
402
00:16:35,979 --> 00:16:38,050
An hour later, I'd be in bed crying.
403
00:16:38,930 --> 00:16:39,910
I can't do this.
404
00:16:39,969 --> 00:16:40,660
What am I doing?
405
00:16:41,199 --> 00:16:43,540
The rollercoaster from
one moment to the next.
406
00:16:43,540 --> 00:16:47,350
And I think it's a case of taking whatever
somebody says with a pinch of salt,
407
00:16:47,380 --> 00:16:49,150
slightly. Not taking it too personally.
408
00:16:49,150 --> 00:16:50,350
I've shouted at my mother.
409
00:16:50,560 --> 00:16:52,000
I've shouted at my boyfriend.
410
00:16:52,270 --> 00:16:53,140
I've been angry.
411
00:16:53,170 --> 00:16:56,350
Sometimes I've said hurtful things
because I am hurt and going through
412
00:16:56,350 --> 00:16:58,480
something that nobody should ever endure.
413
00:16:58,510 --> 00:16:58,600
And,
414
00:16:58,680 --> 00:16:59,370
you're vulnerable.
415
00:16:59,370 --> 00:17:01,439
And you're in that state and you're
not, you know, you're trying to
416
00:17:01,439 --> 00:17:03,150
self regulate your own emotions.
417
00:17:03,300 --> 00:17:03,800
Absolutely.
418
00:17:03,800 --> 00:17:04,020
Yeah.
419
00:17:04,145 --> 00:17:07,325
And some people avoid that, they go, I'm
treading on eggshells around this person,
420
00:17:07,325 --> 00:17:09,845
because I don't want to upset them,
but that is just part of the process.
421
00:17:10,204 --> 00:17:11,495
That's part of the experience.
422
00:17:11,704 --> 00:17:15,665
So open, honest conversation
and communication is essential.
423
00:17:15,715 --> 00:17:15,985
Yeah.
424
00:17:15,985 --> 00:17:18,565
And I like that as well in terms
of just being kind of a listening
425
00:17:18,565 --> 00:17:21,015
ear and, you know, knowing, as
you said, it's not personal.
426
00:17:21,115 --> 00:17:24,444
If one day, you know, as the loved one, the
person who's going through the transplant
427
00:17:24,655 --> 00:17:28,945
or the cancer treatment, you know, is in
a certain state or they are a certain way.
428
00:17:29,245 --> 00:17:32,965
It's because that's the reality, you
know, and it's validating that experience.
429
00:17:32,965 --> 00:17:36,025
And it's also checking in with yourself,
you know, well, how do I, how can I
430
00:17:36,025 --> 00:17:39,355
best show up for this person and myself,
they're both, you know, both important.
431
00:17:39,355 --> 00:17:40,765
So that's some really sound advice.
432
00:17:40,765 --> 00:17:41,425
Thank you for that Brad.
433
00:17:41,425 --> 00:17:44,395
What about then, patients themselves?
434
00:17:44,395 --> 00:17:47,815
So what advice would you give to other
patients who are going through a stem
435
00:17:47,815 --> 00:17:51,595
cell transplant? Perhaps one you wish
you had have had at the time or any
436
00:17:51,595 --> 00:17:53,365
learnings you can, you can pass on?
437
00:17:53,635 --> 00:17:54,235
Two things.
438
00:17:54,795 --> 00:17:56,925
With Alike, there is a
community waiting for you.
439
00:17:57,195 --> 00:17:58,425
And I don't mean to do a cheeky plug.
440
00:17:59,315 --> 00:18:00,395
That's why we developed it.
441
00:18:00,485 --> 00:18:01,415
That's why we made it.
442
00:18:01,805 --> 00:18:05,585
You have, the support that you
need in the Palm of your hand. At any
443
00:18:05,585 --> 00:18:07,535
place, any stage we're here for you.
444
00:18:07,595 --> 00:18:10,625
And so as the community, and that's
what we're working on is making sure
445
00:18:10,625 --> 00:18:15,695
that if it's lonely sleepless nights,
if it's stressing about a potential
446
00:18:15,695 --> 00:18:19,505
sign at a weekend, when all the
hotlines are closed, it's a weekend,
447
00:18:19,535 --> 00:18:22,595
weekend, weekend loneliness and
isolation and stress over symptoms.
448
00:18:22,595 --> 00:18:23,465
And, my temperatures up.
449
00:18:23,535 --> 00:18:24,585
But it's a Sunday evening.
450
00:18:24,585 --> 00:18:29,085
Who the hell do I call? Is a very real
experience I've experienced it myself or
451
00:18:29,085 --> 00:18:33,255
when my temperature is on the precipice
of being over 39, maybe it's 38
452
00:18:33,255 --> 00:18:34,675
point some thing. And you're starting to
panic. And start to feel worried,
453
00:18:36,425 --> 00:18:37,725
and you need to check in with someone.
454
00:18:37,725 --> 00:18:38,145
Do I call
455
00:18:38,145 --> 00:18:38,715
my CNS?
456
00:18:38,715 --> 00:18:40,155
Do I call the emergency line?
457
00:18:40,185 --> 00:18:40,785
What do I do?
458
00:18:40,785 --> 00:18:42,015
Do we go to A&E?
459
00:18:42,045 --> 00:18:43,845
But I'll be sat in A&E for four hours.
460
00:18:44,055 --> 00:18:48,165
It might not be anything. They might just
hook me up to fluid. It's like, what do I do?
461
00:18:48,345 --> 00:18:51,795
And we don't allow people to give
medical advice, or we ask people
462
00:18:51,795 --> 00:18:54,345
to take medical advice with a
pinch of salt, the same situation.
463
00:18:54,345 --> 00:18:55,725
This is one person's experience.
464
00:18:55,725 --> 00:18:59,415
So don't take it as gospel or biblical.
But, it might just be a conversation
465
00:18:59,415 --> 00:19:02,265
that you need to have with somebody that
will just go, oh, don't worry about it.
466
00:19:02,265 --> 00:19:04,995
Like I experienced this,
maybe wait a few hours.
467
00:19:04,995 --> 00:19:07,035
And if you're feeling
nervous, call 111.
468
00:19:07,270 --> 00:19:07,510
Yeah.
469
00:19:07,870 --> 00:19:07,989
To
470
00:19:07,989 --> 00:19:11,050
check in with them and just run
it past them, whatever you need.
471
00:19:11,320 --> 00:19:12,330
Just having that sounding board.
472
00:19:12,419 --> 00:19:15,120
And I think that's really
important and that is 24/7.
473
00:19:15,270 --> 00:19:15,540
Yeah.
474
00:19:15,600 --> 00:19:16,590
So that's the first thing.
475
00:19:16,590 --> 00:19:20,760
The second thing I think is really
important is patients, don't rush the
476
00:19:20,760 --> 00:19:25,379
process of recovery and don't apply
unnecessary expectations to you,
477
00:19:25,500 --> 00:19:27,149
your body and your mental health.
478
00:19:27,209 --> 00:19:27,479
Yeah.
479
00:19:27,510 --> 00:19:28,409
Because pressure is
480
00:19:28,520 --> 00:19:31,700
definitely not what your physical
state and your mental state needs.
481
00:19:31,730 --> 00:19:32,420
No, not at all.
482
00:19:32,450 --> 00:19:36,110
I'd be really careful of rushing
this, of I'm seeing other people
483
00:19:36,110 --> 00:19:37,520
bounce back from cancer so much,
484
00:19:37,520 --> 00:19:38,630
so I'm going to work at this.
485
00:19:38,630 --> 00:19:39,500
I'm going to work at that.
486
00:19:39,560 --> 00:19:40,160
It's it.
487
00:19:40,430 --> 00:19:41,000
It's a process
488
00:19:41,000 --> 00:19:41,720
you can't rush.
489
00:19:42,180 --> 00:19:43,710
So I think that is really important.
490
00:19:44,159 --> 00:19:48,600
Being aware of how to recognise long-term
effects, is part of that being patient.
491
00:19:48,720 --> 00:19:53,550
I don't mean being over prescriptive
and oh, that's related to cancer
492
00:19:53,550 --> 00:19:54,730
or this is related to cancer.
493
00:19:54,870 --> 00:19:57,990
This tweak in one of my
muscles, that might be cancer.
494
00:19:58,050 --> 00:19:58,379
Yeah.
495
00:19:58,680 --> 00:20:00,450
But over time I know.
496
00:20:00,540 --> 00:20:04,440
And I've started to recognise that
whenever I've got like a burst of
497
00:20:04,440 --> 00:20:07,980
energy and I'm having a fantastic
day instantly, I'll start to feel
498
00:20:07,980 --> 00:20:10,260
down, and I'll have a lack of energy.
499
00:20:10,350 --> 00:20:10,830
Yeah.
500
00:20:11,280 --> 00:20:12,810
And I now know that's fatigue.
501
00:20:13,350 --> 00:20:13,830
Okay.
502
00:20:13,870 --> 00:20:14,640
You can name it.
503
00:20:14,640 --> 00:20:18,280
You know, it's the actual biological
process in your body or, you know,
504
00:20:18,360 --> 00:20:19,980
physiological process I should say.
505
00:20:20,540 --> 00:20:20,870
Yeah.
506
00:20:20,900 --> 00:20:24,680
And not blaming my body's
like I've been pumped with
507
00:20:24,680 --> 00:20:27,410
chemotherapy nearly consistently.
508
00:20:28,065 --> 00:20:33,465
For since 2013 to 2017,
I was on long-term drugs.
509
00:20:33,495 --> 00:20:36,675
I had a bone marrow transplant and
we all know how harrowing that is to
510
00:20:36,675 --> 00:20:40,095
go through in terms of the treatment.
Chemotherapy for non-stop 10 days.
511
00:20:40,125 --> 00:20:40,365
Yeah.
512
00:20:40,755 --> 00:20:44,895
So if my body instantly goes, oh, you
are working me a bit too heavy, like
513
00:20:44,895 --> 00:20:46,595
you're running around meeting to meeting.
Signals,
514
00:20:46,655 --> 00:20:47,225
red alert!
515
00:20:47,375 --> 00:20:48,605
We're overworked
516
00:20:48,605 --> 00:20:48,815
here.
517
00:20:48,875 --> 00:20:51,965
Can we just have a chill out so it's like, right,
well, I'll work from home tomorrow.
518
00:20:52,235 --> 00:20:54,005
And it's just, it's managing it.
519
00:20:54,005 --> 00:20:55,745
And I've now learned how to manage it.
520
00:20:55,949 --> 00:20:57,300
It's not fighting against it.
521
00:20:57,720 --> 00:20:59,899
It's not rejecting it
and going no, no, no, no.
522
00:20:59,909 --> 00:21:00,929
You can get through this.
523
00:21:00,929 --> 00:21:04,830
It's just being really kind to my
body and to my own mental health.
524
00:21:04,860 --> 00:21:06,480
And I think that is
really, really important.
525
00:21:06,629 --> 00:21:10,409
Um, so being able to manage
long-term effects as well is, is key.
526
00:21:10,860 --> 00:21:12,179
But part of that is patience.
527
00:21:12,389 --> 00:21:12,629
Yeah.
528
00:21:13,010 --> 00:21:16,010
And I liked that as well because Brad
has quite the compassionate approach.
529
00:21:16,010 --> 00:21:18,080
You know, you sometimes it's
thrown around, you know, look after
530
00:21:18,080 --> 00:21:19,879
yourself and, you know, self care.
531
00:21:19,879 --> 00:21:22,820
But actually, as you just said,
there, it's naming it sometimes.
532
00:21:23,330 --> 00:21:25,580
As you know, today I'm
feeling really tired.
533
00:21:25,610 --> 00:21:27,330
Um, you know, I've been doing X, Y, Z.
534
00:21:27,680 --> 00:21:30,050
Oh, that's fatigued because my
body has been through so much.
535
00:21:30,080 --> 00:21:33,860
My mind has been through so much and it's
validating that and recognising that,
536
00:21:33,860 --> 00:21:37,370
and then meeting yourself as you just so
articulately said with that compassion
537
00:21:37,430 --> 00:21:39,410
and saying, okay, what can I do?
538
00:21:39,410 --> 00:21:40,430
What are my strategies?
539
00:21:40,430 --> 00:21:41,540
What fills my bucket?
540
00:21:41,780 --> 00:21:43,040
What's my coping mechanism?
541
00:21:43,040 --> 00:21:45,440
Is it to go to bed early
or talk to a loved one or.
542
00:21:45,605 --> 00:21:48,395
Work from home, you know,
depending on your responsibility.
543
00:21:48,395 --> 00:21:48,905
So yeah.
544
00:21:48,905 --> 00:21:51,755
I just think that's so inspiring
to kind of have that key advice.
545
00:21:51,755 --> 00:21:52,385
I really, yeah.
546
00:21:52,445 --> 00:21:54,695
I know a lot of patients will find
that, you know, really, really
547
00:21:54,725 --> 00:21:56,285
important too.
I hope so.
548
00:21:56,675 --> 00:21:57,185
Yeah.
549
00:21:57,755 --> 00:22:01,325
And then I feel like Brad, this is
a really key question because you're
550
00:22:01,325 --> 00:22:06,605
doing so much, so, um, I'd love to know
where anyone who's listening and myself,
551
00:22:06,635 --> 00:22:09,215
you know, where can we find out more
about your work and what you're up to?
552
00:22:09,505 --> 00:22:14,035
Well, we have a lovely new website,
which we put a lot of time and
553
00:22:14,270 --> 00:22:19,310
efforts and energy into, so that
is alike.org.uk, which really
554
00:22:19,310 --> 00:22:21,080
shares our story, our team.
555
00:22:21,110 --> 00:22:22,880
And we're constantly
developing that as well.
556
00:22:22,880 --> 00:22:25,220
So that's definitely going to be
a space where we want people to
557
00:22:25,220 --> 00:22:29,390
learn everything that Alike is, and
really be the home for us online.
558
00:22:29,450 --> 00:22:32,060
And people can follow us on Twitter.
559
00:22:32,540 --> 00:22:36,980
So we are at @AlikeUK, and they
can follow us on Instagram as well,
560
00:22:37,040 --> 00:22:43,115
which is the same, uh, Alike.uk and
for any of my NHS work, um, I, this
561
00:22:43,115 --> 00:22:44,254
is a bit of a long, but why not?
562
00:22:44,254 --> 00:22:49,715
If you're interested in the work that I
do with the NHS, england.nhs.uk
563
00:22:49,715 --> 00:22:52,595
/getinvolved/CYP.
564
00:22:52,955 --> 00:22:57,004
I work with an incredible team who work
really hard to make sure that children
565
00:22:57,004 --> 00:23:02,105
and young people's voices are at the
centre of policymaking and senior
566
00:23:02,105 --> 00:23:03,905
level decision making within the NHS.
567
00:23:04,274 --> 00:23:04,905
Amazing.
568
00:23:04,905 --> 00:23:05,594
That's incredible.
569
00:23:05,594 --> 00:23:07,155
And I feel like Brad, I don't know.
570
00:23:07,155 --> 00:23:08,405
You're kinda like an octopus to me.
571
00:23:08,405 --> 00:23:11,554
You've got these like eight hands and
like, they're just everywhere, but
572
00:23:11,554 --> 00:23:14,084
every single, you know, well, I guess
they're tentacles, but you know, in,
573
00:23:14,084 --> 00:23:18,574
In this, in this metaphor, you know,
so many incredible things. So absolutely
574
00:23:18,905 --> 00:23:21,264
I would encourage anyone to look at
what Alike's up to,
575
00:23:21,284 --> 00:23:23,195
and also to look your NHS work.
576
00:23:23,355 --> 00:23:26,505
But, you know, you bring in that micro
level perspective of, you know, this was
577
00:23:26,505 --> 00:23:30,195
my experience and here's how I'm going
to help inform policies within the NHS.
578
00:23:30,195 --> 00:23:33,375
And beyond at government
level to affect positive change.
579
00:23:34,905 --> 00:23:36,165
Yeah and, it is a lot of work.
580
00:23:36,315 --> 00:23:43,095
And I'm going to say that I do work very
hard, but it's driven by pure passion.
581
00:23:43,365 --> 00:23:43,635
Yeah.
582
00:23:44,025 --> 00:23:48,465
And when you love what you do, you
don't work a hard day in your life.
583
00:23:48,915 --> 00:23:52,745
I think that, I think that's the
term paraphrasing, but I absolutely,
584
00:23:52,805 --> 00:23:54,395
I absolutely love what I do.
585
00:23:54,725 --> 00:23:55,225
I do.
586
00:23:55,360 --> 00:23:58,600
Even though there are days
where it is quite intense.
587
00:23:58,629 --> 00:23:58,870
Yeah.
588
00:23:59,230 --> 00:24:03,580
But I know that I'm living my passion
and something that I'm very interested
589
00:24:03,580 --> 00:24:07,929
in and that's something that I would
always encourage people to do. Is what
590
00:24:08,400 --> 00:24:11,220
am I passionate about, especially
after facing something like
591
00:24:11,220 --> 00:24:12,690
cancer, live your life
592
00:24:12,690 --> 00:24:15,900
however you want to live it and find
your passion because that's when
593
00:24:15,900 --> 00:24:18,900
you will enjoy the work that you
do, which will then impact the rest
594
00:24:18,900 --> 00:24:20,250
of your life and your experience.
595
00:24:20,660 --> 00:24:21,440
Incredible Brad.
596
00:24:21,440 --> 00:24:24,320
I really do feel like you are a
role model for that in terms of,
597
00:24:24,320 --> 00:24:27,440
you know, taking that difficult
experience that you had and sort of.
598
00:24:27,870 --> 00:24:30,149
You know, playing with it in terms
of what am I going to do now, and
599
00:24:30,149 --> 00:24:33,120
then look at you now, you know,
you've launched your own charity.
600
00:24:33,120 --> 00:24:34,709
You've just done this incredible app.
601
00:24:34,709 --> 00:24:38,060
And you know, you're articulating,
you're also speaking about the NHS.
602
00:24:38,100 --> 00:24:41,189
You're doing such incredible
work, which also benefits others.
603
00:24:41,370 --> 00:24:42,629
And that's kind of the key thing.
604
00:24:42,629 --> 00:24:44,830
So, um, it's been nothing but an
605
00:24:44,960 --> 00:24:45,920
absolute pleasure.
606
00:24:45,920 --> 00:24:48,980
And I know many patients on family
members and loved ones and friends
607
00:24:49,280 --> 00:24:53,030
are going to find this so informative
and, and fascinating to hear your
608
00:24:53,030 --> 00:24:54,470
experience and what you're up to now.
609
00:24:54,500 --> 00:24:56,990
So, thank you so much for
coming on the Anthony Nolan Podcast.
610
00:24:57,850 --> 00:24:58,690
Thank you so much.
611
00:24:58,690 --> 00:25:00,520
And thank you for giving
me the space to talk about this.
612
00:25:00,520 --> 00:25:01,930
It's been absolutely wonderful.
613
00:25:02,140 --> 00:25:02,950
Thank you, Brad!
614
00:25:03,975 --> 00:25:08,205
For more information on stem cell
transplants and recovery, as well as free
615
00:25:08,205 --> 00:25:13,575
resources that you can download and order
visit our website, anthonynolan.org
616
00:25:13,725 --> 00:25:18,345
We also have fantastic supportive platform
that is our patients and families forum,
617
00:25:18,375 --> 00:25:22,515
where you can connect with others who have
had an experience of stem cell transplant.
618
00:25:22,679 --> 00:25:27,629
To access our online community, visit
anthonynolan.org/forum
619
00:25:27,689 --> 00:25:31,709
We also have our patients and families
Facebook page, where you can access
620
00:25:31,709 --> 00:25:36,419
our latest posts, information, events,
and much more. To hear more about
621
00:25:36,419 --> 00:25:42,300
this and our other supports, please
visit anthonynolan.org/patients
622
00:25:42,480 --> 00:25:46,649
You can also email
us at patientinfo@anthonynolan.org
623
00:25:46,830 --> 00:25:50,879
Or call us on 0303 303 0303
624
00:25:51,120 --> 00:25:51,570
Thank

1
00:00:00,030 --> 00:00:04,530
Welcome to episode 11 of Anthony
Nolans patient services team podcast.
2
00:00:04,770 --> 00:00:09,300
I'm Claire and I am the patient and family
engagement manager here at Anthony Nolan.
3
00:00:09,600 --> 00:00:12,300
Through this series of podcasts, we
hope to provide you with different
4
00:00:12,300 --> 00:00:15,750
insights into the experiences of
having a stem cell transplant.
5
00:00:16,080 --> 00:00:20,370
We'll be looking at what life is like
before, during and after transplant.
6
00:00:20,460 --> 00:00:23,940
As well as talking with healthcare
professionals for advice and guidance,
7
00:00:24,090 --> 00:00:27,600
we will also hear from patients and
their families who will share their
8
00:00:27,600 --> 00:00:29,940
personal stories and experiences with you.
9
00:00:30,090 --> 00:00:33,690
We hope you find this helpful,
interesting and informative.
10
00:00:34,200 --> 00:00:36,090
Today I am joined by Brad Gudger,
11
00:00:36,150 --> 00:00:38,760
who had a stem cell transplant in 2018
12
00:00:38,790 --> 00:00:42,810
following a relapse from chronic myeloid
leukaemia. During isolation for his
13
00:00:42,810 --> 00:00:47,040
stem cell transplant, Brad formulated
plans to launch his own charity.
14
00:00:47,190 --> 00:00:51,269
Alike, Alike a charity with
the mission to combat loneliness and
15
00:00:51,269 --> 00:00:53,190
isolation in the cancer community.
16
00:00:53,430 --> 00:00:55,440
And their mantra is powered by friendship.
17
00:00:55,860 --> 00:00:59,430
This year, Alike launched
their very own app, an iOS and
18
00:00:59,430 --> 00:01:01,320
Android peer support platform.
19
00:01:01,560 --> 00:01:07,410
Brad also does some incredible work for
the NHS as a youth expert advisor, and
20
00:01:07,410 --> 00:01:11,640
recently joined NHS England's
clinical entrepreneurs program.
21
00:01:11,840 --> 00:01:13,910
I am so looking forward
to this conversation!
22
00:01:14,030 --> 00:01:14,929
Welcome Brad.
23
00:01:15,130 --> 00:01:15,580
Hello?
24
00:01:15,640 --> 00:01:16,270
Hello!
25
00:01:16,330 --> 00:01:17,620
Thank you so much for having me!
26
00:01:17,679 --> 00:01:18,789
How are you doing today?
27
00:01:18,880 --> 00:01:20,020
Absolutely glorious.
28
00:01:20,080 --> 00:01:20,530
How are you?
29
00:01:20,650 --> 00:01:21,640
I'm doing really well.
30
00:01:21,970 --> 00:01:22,570
I'm honestly.
31
00:01:22,570 --> 00:01:25,090
so looking forward to this, I
feel like there's so much to cover
32
00:01:25,090 --> 00:01:27,190
and I'm just really delighted
to have you on the podcast.
33
00:01:27,190 --> 00:01:28,090
So thanks for being here.
34
00:01:28,300 --> 00:01:28,930
Thank you for having me.
35
00:01:29,015 --> 00:01:32,945
Brad, you had a stem cell
transplant back in 2018.
36
00:01:33,185 --> 00:01:35,045
Can you tell us what that was like for
37
00:01:35,045 --> 00:01:35,255
you?
38
00:01:35,455 --> 00:01:39,115
Oh, a whirlwind, I think is
the only way to describe it.
39
00:01:39,145 --> 00:01:42,685
I think looking back, I
definitely asked myself, how
40
00:01:42,685 --> 00:01:43,975
did I actually get through that?
41
00:01:44,455 --> 00:01:46,645
The process was actually
very long, as well.
42
00:01:46,815 --> 00:01:52,335
I was told in August 2017 that
the medication that I was on, I was
43
00:01:52,335 --> 00:01:57,225
on a series of TK inhibitors, which
were meant to inhibit the growth
44
00:01:57,285 --> 00:01:58,905
of my cancer in my bone marrow.
45
00:01:59,445 --> 00:02:02,565
And sadly, it was meant to be a
lifelong treatment and sadly, it just
46
00:02:02,565 --> 00:02:03,975
didn't, it wasn't the right fit for me.
47
00:02:04,065 --> 00:02:04,815
It didn't work.
48
00:02:05,024 --> 00:02:06,764
My body didn't respond to it very well.
49
00:02:07,010 --> 00:02:09,740
After several attempts on
different generations of the drug.
50
00:02:09,859 --> 00:02:13,490
I was told by my consultant,
look, this is not working for you.
51
00:02:13,550 --> 00:02:17,780
So we're going to go down the curative
route, which is a stem cell transplant
52
00:02:17,840 --> 00:02:19,250
and a bone marrow transplant.
53
00:02:19,280 --> 00:02:19,520
Yeah.
54
00:02:19,640 --> 00:02:21,020
That was August.
55
00:02:21,079 --> 00:02:26,630
We spent the last part of the rest of
2017 looking for a bone marrow donor.
56
00:02:27,320 --> 00:02:30,829
And I think what I recall
from that experience was just
57
00:02:30,890 --> 00:02:31,910
the level of uncertainty.
58
00:02:32,380 --> 00:02:32,740
Yeah.
59
00:02:33,040 --> 00:02:35,230
And I know so many other
60
00:02:35,450 --> 00:02:40,010
patients and survivors that say yes,
having cancer is awful. Experiencing
61
00:02:40,010 --> 00:02:41,720
chemotherapy and treatment is awful.
62
00:02:41,810 --> 00:02:46,730
But the anxiety that is brought on by
uncertainty is really difficult to deal
63
00:02:46,730 --> 00:02:48,680
with, because there is nothing you can do.
64
00:02:48,680 --> 00:02:50,090
It takes away that control.
65
00:02:50,810 --> 00:02:53,120
There was a lot of anxiety.
66
00:02:53,245 --> 00:02:55,195
And stress pre transplant.
67
00:02:55,945 --> 00:02:59,515
So when I got the date of admission
to hospital had my bone marrow
68
00:02:59,515 --> 00:03:02,665
donor sorted, we went through a
bit of drama around finding the
69
00:03:02,665 --> 00:03:03,835
right bone marrow donor for me.
70
00:03:03,895 --> 00:03:06,235
Um, so we settled on my brother.
71
00:03:06,625 --> 00:03:09,145
My consultant decided that my
brother would be my donor, which was
72
00:03:09,145 --> 00:03:11,875
really special as well, actually,
whilst it was, yeah, really sad
73
00:03:11,875 --> 00:03:13,075
to be in those circumstances.
74
00:03:13,075 --> 00:03:16,045
It actually was a lovely way
of bringing us closer together.
75
00:03:16,855 --> 00:03:18,835
So I got my admission day and I knew,
76
00:03:18,935 --> 00:03:20,105
this is routine for them.
77
00:03:20,105 --> 00:03:21,545
I'm treated in Hammersmith hospital.
78
00:03:21,545 --> 00:03:22,475
It's a routine for them.
79
00:03:22,475 --> 00:03:23,925
This is your admission date.
80
00:03:23,925 --> 00:03:25,385
This is your chemotherapy regime.
81
00:03:25,385 --> 00:03:28,595
This is when we plan on giving you
an infusion with the stem cells.
82
00:03:28,835 --> 00:03:31,595
This is how long the process
will take, et cetera, et cetera.
83
00:03:31,595 --> 00:03:34,715
So as soon as I got that, the
anxiety levels came down and I was
84
00:03:34,715 --> 00:03:38,345
much more prepared, like, right,
let's do this. And more prepared
85
00:03:38,375 --> 00:03:40,145
for the fight really, but I think.
86
00:03:40,250 --> 00:03:41,210
Yeah, looking back.
87
00:03:41,210 --> 00:03:43,010
It's still that question of
how did I get through that?
88
00:03:43,010 --> 00:03:44,480
Just because it was such a long process.
89
00:03:44,480 --> 00:03:47,390
I was in hospital for two months
and I remember on day one thinking,
90
00:03:47,450 --> 00:03:48,860
oh, this is such a challenge.
91
00:03:49,280 --> 00:03:53,810
How am I meant to do this for 60 days, at
least. It was like, how am I going to do this?
92
00:03:53,810 --> 00:03:55,100
But thankfully I did.
93
00:03:55,100 --> 00:03:57,079
And retrospect, I'm just
very proud of myself really.
94
00:03:57,820 --> 00:03:58,240
Good.
95
00:03:58,480 --> 00:03:58,630
It
96
00:03:58,630 --> 00:04:01,630
sounds to me like what you were saying,
there is, it was so daunting and as you
97
00:04:01,630 --> 00:04:03,445
say, you know, There's that anxiety of,
98
00:04:03,475 --> 00:04:03,835
okay,
99
00:04:03,865 --> 00:04:04,915
How do I find a match?
100
00:04:04,915 --> 00:04:06,925
And it's going to be the
matching donor and then, okay.
101
00:04:06,925 --> 00:04:09,415
What does it look like now
that I go through that process?
102
00:04:09,475 --> 00:04:10,975
And then there's, you add onto that
103
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post-transplant where, you know,
you're in isolation, you're in
104
00:04:13,975 --> 00:04:15,865
hospital and that can be so daunting.
105
00:04:15,865 --> 00:04:18,445
And as you say at the time, you're
like, wow, there's still more to
106
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come. After a while of, as you say,
chemotherapy, and that other medication
107
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you were on, you're kind of like,
okay, the journey is still existing.
108
00:04:25,265 --> 00:04:27,485
I'm still on this, on
this road to recovery.
109
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And asking about myself, about like, how did
actually get through that.
110
00:04:30,805 --> 00:04:33,955
But at the time it's, 'well, you
have to!' there's nothing else.
111
00:04:33,955 --> 00:04:37,135
Like, the only solution is for
you to just get through this.
112
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You don't really dwell on it at the
time. But then in retrospect, you look
113
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back and go, wow, you got through it.
114
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Yeah.
115
00:04:44,190 --> 00:04:47,700
And I love that you said in a way of like,
I'm so proud of myself because I mean,
116
00:04:47,700 --> 00:04:51,030
it's no easy feat, you know, it's not
like you just kind of sail through that.
117
00:04:51,030 --> 00:04:54,479
I'm sure there was moments of as you've expressed,
you know, uncertainty and anxiety
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and then your brothers involved.
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00:04:55,680 --> 00:04:58,349
And then you've got, you kind of,
as you say, you pass it over to the
120
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Hammersmith team, you know, your
hospital, your medical team to kind
121
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of put everything in their hands.
122
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So yeah.
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I'm glad that you're proud of yourself.
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And so you should be!
125
00:05:05,895 --> 00:05:07,485
You were a young person and you still are.
126
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Not to the NHS!
127
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The other side of 25 now so.
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To me you are young you're young!
129
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Um, but how did that impact your life
130
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at the time? Well it affects
every area of your life.
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Really.
132
00:05:20,915 --> 00:05:24,095
So everything. It affected my confidence.
133
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I had leukemia originally age 19.
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Right.
135
00:05:27,580 --> 00:05:31,660
And following treatment and recovery
and on a maintenance treatment.
136
00:05:31,660 --> 00:05:34,090
So I call it recovery, but
it felt like a recovery.
137
00:05:34,090 --> 00:05:35,470
It felt like I'd had a brush with cancer.
138
00:05:35,470 --> 00:05:39,370
I was on this meant to be lifelong
treatment and had really worked on myself.
139
00:05:39,370 --> 00:05:43,840
I'd worked on my, my physical
shape, and my mental health as well.
140
00:05:44,380 --> 00:05:47,890
Moving down to London and working in
different industries, creative industries,
141
00:05:47,890 --> 00:05:52,990
meeting incredible people, volunteering
for some amazing charities and just really
142
00:05:52,990 --> 00:05:55,060
expanding my network and relationships.
143
00:05:55,155 --> 00:05:59,955
When I got the news that I had to have
a transplant, it knocked my confidence.
144
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I'd worked so hard on my identity
and who I was and who is Bradley
145
00:06:04,335 --> 00:06:08,505
And this brought cancer right
back centre stage, which was
146
00:06:08,505 --> 00:06:09,975
just very difficult to deal with.
147
00:06:10,005 --> 00:06:13,095
And I know that's an understatement,
but what else is there to say?
148
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It is.
149
00:06:13,510 --> 00:06:14,890
Just a difficult period.
150
00:06:14,980 --> 00:06:15,250
Yeah.
151
00:06:15,340 --> 00:06:17,140
So it definitely affected my confidence.
152
00:06:17,140 --> 00:06:18,820
It affected my relationships.
153
00:06:18,850 --> 00:06:21,940
My parents were still living
in our family home, which is
154
00:06:21,940 --> 00:06:23,080
northeast England at the time.
155
00:06:23,080 --> 00:06:27,430
So there was that separation.
Like our son is in London going
156
00:06:27,430 --> 00:06:28,270
through this difficult time.
157
00:06:28,270 --> 00:06:28,780
What do we do?
158
00:06:28,780 --> 00:06:30,220
They wanted to be here of course.
159
00:06:30,220 --> 00:06:33,700
But how could they be logistics
was challenging working to
160
00:06:33,700 --> 00:06:34,960
try and find us a donor.
161
00:06:34,960 --> 00:06:38,350
Speaking with my brother who at the
time was in Leeds. Well actually, no,
162
00:06:38,350 --> 00:06:39,490
he was on the other side of the world.
163
00:06:39,490 --> 00:06:39,670
He was.
164
00:06:39,820 --> 00:06:40,840
Traveling at the time.
165
00:06:41,170 --> 00:06:45,039
So there was having to have that
conversation. There was my partner.
166
00:06:45,039 --> 00:06:47,080
I've been with my boyfriend for.
167
00:06:47,460 --> 00:06:48,540
Nearly five years now.
168
00:06:48,570 --> 00:06:53,760
So he was with me during that process.
And because of how I'd been with
169
00:06:53,760 --> 00:06:57,420
my original diagnosis, I always
refer to myself as a cancer survivor
170
00:06:57,450 --> 00:06:58,920
when that was technically not true.
171
00:06:58,920 --> 00:07:02,040
I was still a cancer patient because
I was on long-term treatment.
172
00:07:02,520 --> 00:07:02,820
Right, Yeah.
173
00:07:02,919 --> 00:07:05,860
But I always felt that it was so difficult
to try and explain to somebody that,
174
00:07:05,860 --> 00:07:08,710
yeah, I'm a cancer patient, but here
I am with a full head of hair looking
175
00:07:08,710 --> 00:07:13,060
quite slinky, going out to bars, going
to events, working long hours. living
176
00:07:13,060 --> 00:07:17,229
my life normally as, as a young person
living in London, but then having to try
177
00:07:17,229 --> 00:07:18,940
and explain to somebody I have cancer.
178
00:07:18,940 --> 00:07:20,289
Like I am a cancer patient, so.
179
00:07:20,375 --> 00:07:22,715
That meant that I refer
to myself as a patient.
180
00:07:22,985 --> 00:07:25,775
And when you tell yourself something
over and over again, and you're telling
181
00:07:25,775 --> 00:07:27,215
other people, you believe it, right?
182
00:07:27,235 --> 00:07:29,515
So I believe myself that
I was a cancer survivor.
183
00:07:29,905 --> 00:07:34,285
So I had to grapple with that ah
no, you are not a cancer survivor.
184
00:07:34,285 --> 00:07:37,015
You are now a fully cancer
patient and you are going to
185
00:07:37,015 --> 00:07:38,395
have to go into treatment again.
186
00:07:38,395 --> 00:07:40,735
So you're going to have to
deal with losing your hair.
187
00:07:40,735 --> 00:07:42,805
You're going to have to
deal with the fluctuation
188
00:07:42,905 --> 00:07:45,815
in weight, the change of your
appearance, the difficult days with
189
00:07:45,815 --> 00:07:49,835
your mental health. The loneliness and
isolation that comes with all of that.
190
00:07:49,955 --> 00:07:52,355
And then of course it affected
my personal development and
191
00:07:52,355 --> 00:07:53,465
my professional development.
192
00:07:54,205 --> 00:07:56,905
It can bring things more to a standstill
can't it because you, as you
193
00:07:56,905 --> 00:07:59,485
said earlier, you know, you've no
choice in the matter. There you were,
194
00:07:59,485 --> 00:08:02,575
you know, living your life, trying
to, you know, live a full, happy life.
195
00:08:02,575 --> 00:08:05,215
And then you're doing what
you can with your career and
196
00:08:05,215 --> 00:08:06,565
different kind of interests.
197
00:08:06,565 --> 00:08:06,895
And then.
198
00:08:06,994 --> 00:08:10,054
As you said, you know, previously,
it comes centre stage again, cancer.
199
00:08:10,265 --> 00:08:10,655
Okay.
200
00:08:10,655 --> 00:08:11,734
I'm on active treatment.
201
00:08:11,734 --> 00:08:12,244
Okay.
202
00:08:12,455 --> 00:08:14,794
There's been a relapse.
Now I need a transplant.
203
00:08:14,825 --> 00:08:16,655
It brings everything to a standstill.
204
00:08:16,655 --> 00:08:19,474
And that becomes your focus, which is
really difficult when you're trying to
205
00:08:19,474 --> 00:08:21,065
thrive, you know, as a young person.
206
00:08:21,065 --> 00:08:23,224
So I can imagine, I can imagine.
207
00:08:23,844 --> 00:08:27,534
Was it then, like after you had
your transplant, you know, that kind
208
00:08:27,534 --> 00:08:29,664
of recovery stage, how was that?
209
00:08:29,790 --> 00:08:29,970
Now,
210
00:08:29,970 --> 00:08:33,480
this is probably not very helpful
for other listeners, but my recovery
211
00:08:33,480 --> 00:08:37,470
actually went by in a blink.
Really?
Because I had something to focus
212
00:08:37,470 --> 00:08:39,270
on, which I will touch upon later.
213
00:08:39,300 --> 00:08:43,440
But I had this goal and I had this
energy that came from this project
214
00:08:43,470 --> 00:08:45,060
and this passion and desire.
215
00:08:45,090 --> 00:08:49,230
I wasn't thinking about
my recovery every day and the
216
00:08:49,230 --> 00:08:50,430
hospital appointments would.
217
00:08:50,564 --> 00:08:51,375
Come and go.
218
00:08:51,405 --> 00:08:54,645
It would be routine popping into
the hospital twice a week to have my
219
00:08:54,675 --> 00:08:58,215
blood checked, see the consultant, get
my medication, everything all good?
220
00:08:58,275 --> 00:08:59,865
Everything's all good! Off we go.
221
00:09:00,314 --> 00:09:01,185
And that just happened.
222
00:09:01,215 --> 00:09:03,314
And then as time went
on, it was like, right.
223
00:09:03,345 --> 00:09:05,115
Well, we're going to
see you once next week.
224
00:09:05,115 --> 00:09:06,885
And then we're going to see
you once every two weeks.
225
00:09:06,885 --> 00:09:09,075
And then it will be once
more, once every three weeks.
226
00:09:09,075 --> 00:09:10,095
And that's when it started to get.
227
00:09:10,219 --> 00:09:14,420
Wider and wider, that gap, which was really
good for me as well. To not constantly
228
00:09:14,420 --> 00:09:17,780
be faced with hospital environments
and seeing medical professionals
229
00:09:17,810 --> 00:09:19,819
all the time, which is quite tricky.
230
00:09:19,850 --> 00:09:23,209
So that meant that it went by in a
blink and it got to like September
231
00:09:23,360 --> 00:09:28,209
when it was my birthday. I'm just,
oh my! Like it's September, isn't that so strange!
232
00:09:28,209 --> 00:09:28,449
Yes.
233
00:09:28,600 --> 00:09:29,060
Oh God.
234
00:09:31,360 --> 00:09:31,480
How did we get here?
235
00:09:31,540 --> 00:09:34,240
And then that's when the
reflection starts like, well, it
236
00:09:34,240 --> 00:09:36,550
has been a turbulent time and.
237
00:09:36,740 --> 00:09:40,670
Just really setting in, again,
starting that journey of, okay,
238
00:09:40,670 --> 00:09:42,920
so who am I now without cancer?
239
00:09:43,310 --> 00:09:47,690
So I got given the news that I was in
remission quite soon after my transplant.
240
00:09:47,690 --> 00:09:53,120
I got given the news in March towards the
end of March, um, after doing a series
241
00:09:53,120 --> 00:09:56,780
of tests and investigation and said,
yeah, you're in full molecular remission,
242
00:09:57,170 --> 00:09:59,570
which was incredibly emotional.
I'm sure!
243
00:09:59,600 --> 00:10:00,980
But then there was the journey of yeah.
244
00:10:00,990 --> 00:10:02,270
Helping my body recover.
245
00:10:02,415 --> 00:10:04,035
And my, my mental state recover.
246
00:10:04,045 --> 00:10:07,665
But as I said, being distracted
by a project and by a passion
247
00:10:07,665 --> 00:10:09,225
was really helpful for me.
248
00:10:09,465 --> 00:10:09,735
Yeah.
249
00:10:09,765 --> 00:10:13,814
September came along, it was like,
yeah, you don't have cancer anymore.
250
00:10:13,875 --> 00:10:16,785
Finally, you can say you
are a cancer survivor.
251
00:10:17,205 --> 00:10:18,135
You've entered that stage now.
252
00:10:18,165 --> 00:10:19,215
I've entered that stage.
253
00:10:19,245 --> 00:10:23,205
Cancer had been with me since
the age of 19 and I was now 25.
254
00:10:23,385 --> 00:10:23,745
Wow, long time!
255
00:10:23,865 --> 00:10:24,944
So it was, yeah.
256
00:10:24,975 --> 00:10:26,685
Who are you now, without cancer?
257
00:10:26,685 --> 00:10:28,005
Like, what is Bradley about?
258
00:10:28,005 --> 00:10:31,365
And that journey in itself was very,
very interesting because I had the time
259
00:10:31,365 --> 00:10:35,025
to self-reflect. I had the time to speak
to other people and I suppose that's
260
00:10:35,025 --> 00:10:40,155
given me a level of like personal and
I'd say emotional stability, like an
261
00:10:40,155 --> 00:10:43,875
emotional maturity, because I was able
to have that time of reflecting and looking inward.
262
00:10:44,555 --> 00:10:45,035
Exactly.
263
00:10:45,035 --> 00:10:48,185
And it says a lot that you have that
introspection, it's not just introspection
264
00:10:48,185 --> 00:10:49,415
in terms of that kind of factual.
265
00:10:49,415 --> 00:10:49,655
Okay.
266
00:10:49,655 --> 00:10:50,405
I've been through this.
267
00:10:50,405 --> 00:10:51,365
This is how it's been.
268
00:10:51,650 --> 00:10:52,310
But also, okay.
269
00:10:52,310 --> 00:10:53,240
What does this mean for me now?
270
00:10:53,240 --> 00:10:54,800
I am checking in with myself.
271
00:10:54,800 --> 00:10:55,190
Here I am.
272
00:10:55,190 --> 00:10:58,760
As you say, you know, I've had this
idea, this project, this exciting
273
00:10:58,760 --> 00:11:02,360
passion that I'm developing and I've
channeled all my energy into this.
274
00:11:02,360 --> 00:11:05,210
And that's then what kind of has led
you to the now. Which leads me to my
275
00:11:05,210 --> 00:11:08,990
next question about, you know, it's no
denying that you're so passionate about
276
00:11:08,990 --> 00:11:10,700
the importance of connecting with others
277
00:11:10,700 --> 00:11:13,790
when you're going through a cancer
diagnosis or any type of treatment,
278
00:11:13,790 --> 00:11:17,480
including a transplant. What was
your experience of isolation?
279
00:11:17,510 --> 00:11:18,770
And is this where you got the
280
00:11:18,770 --> 00:11:20,450
idea?
281
00:11:20,910 --> 00:11:24,450
For me. And we know that every cancer
experience is different.
282
00:11:24,840 --> 00:11:30,000
So I use 'for me' in the knowledge that
it was my circumstance and my experience.
283
00:11:30,060 --> 00:11:33,750
For me, loneliness and isolation at
times was worse than the treatment.
284
00:11:34,260 --> 00:11:38,490
And I'm so glad more and more
people are now talking about that,
285
00:11:38,490 --> 00:11:40,410
and talking about the experiences
286
00:11:40,525 --> 00:11:45,325
post cancer, because as Alike are
really keen on advocating; cancer
287
00:11:45,325 --> 00:11:49,225
doesn't stop the day you get told that
you're in remission. For so many people.
288
00:11:49,765 --> 00:11:52,765
And there's that feeling
of going off a cliff edge.
289
00:11:52,915 --> 00:11:53,125
Yeah.
290
00:11:53,155 --> 00:11:56,365
I'm glad more and more people
are now talking about loneliness
291
00:11:56,365 --> 00:12:00,355
and isolation because so many people
experience it, and the problems
292
00:12:00,355 --> 00:12:02,215
with cancer don't stop the day
293
00:12:02,405 --> 00:12:03,755
you get told you're in remission.
294
00:12:03,875 --> 00:12:04,235
Yeah.
295
00:12:04,444 --> 00:12:09,714
And this absolute maze and jungle of
living with cancer post treatment.
296
00:12:09,895 --> 00:12:13,944
And what support are you able to access,
and what is available to you now
297
00:12:13,944 --> 00:12:15,265
you're no longer a patient?
298
00:12:15,525 --> 00:12:17,185
Now you're a survivor. For so long,
299
00:12:17,185 --> 00:12:19,824
this problem was being
endured by people in silence.
300
00:12:20,005 --> 00:12:20,305
Right.
301
00:12:20,334 --> 00:12:22,824
So it's fantastic that people
are now talking about it because
302
00:12:22,824 --> 00:12:24,145
loneliness is a hidden killer.
303
00:12:24,395 --> 00:12:28,625
Yeah.
Loneliness increases
mortality by 26%, chronic loneliness.
304
00:12:28,685 --> 00:12:32,315
It is a killer, and compounded
by a cancer diagnosis
305
00:12:32,315 --> 00:12:36,335
it can be fatal and I don't want to sound
overdramatic, but it's such a problem.
306
00:12:36,365 --> 00:12:41,135
And it affects people's not only
physical health, but your mental health.
307
00:12:41,165 --> 00:12:41,735
And it's just.
308
00:12:41,935 --> 00:12:44,875
It's something incredibly
debilitating on top of chemotherapy.
Absolutely!
309
00:12:45,385 --> 00:12:48,925
So it's something that I've
experienced before cancer being
310
00:12:48,925 --> 00:12:50,485
a gay man in a rural village.
311
00:12:50,535 --> 00:12:53,785
It's something that I experienced
during my first diagnosis as a 19
312
00:12:53,785 --> 00:12:57,975
year old in a village with cancer.
Feeling completely separated from
313
00:12:57,975 --> 00:12:59,515
so many other people and my loved ones.
314
00:12:59,595 --> 00:13:03,195
Feeling lonely in London, even
though I had a fantastic group of
315
00:13:03,195 --> 00:13:08,375
friends, new connections, this vibrant
industry that I was a part of, that I
316
00:13:08,375 --> 00:13:10,295
feel like welcomed me with open arms.
317
00:13:10,325 --> 00:13:12,725
You can be in a room full of
people and still feel lonely.
318
00:13:12,785 --> 00:13:13,085
Yeah.
319
00:13:13,435 --> 00:13:14,015
So true.
320
00:13:14,165 --> 00:13:19,025
And then finding out I relapsed or the
cancer had come back or the cancer had
321
00:13:19,025 --> 00:13:23,015
become more aggressive and then facing
a bone marrow transplant in London.
322
00:13:23,105 --> 00:13:23,525
Yeah.
323
00:13:23,755 --> 00:13:26,425
Increased loneliness and then
being in hospital on my own and
324
00:13:26,425 --> 00:13:27,925
being isolated for two months.
325
00:13:27,954 --> 00:13:30,954
So loneliness, sadly has been
a thread in my experience.
326
00:13:30,954 --> 00:13:33,025
And I know it's a thread
for so many other people as well.
327
00:13:33,045 --> 00:13:35,324
It's a theme,
part of the experience.
328
00:13:35,355 --> 00:13:36,165
It really is.
329
00:13:36,285 --> 00:13:37,995
It's a, it's a side effect of
330
00:13:37,995 --> 00:13:38,625
chemotherapy.
331
00:13:38,625 --> 00:13:39,885
That's a great way to put it actually.
332
00:13:40,000 --> 00:13:42,910
Yeah, that's incredible Brad,
you know, it's so inspiring to
333
00:13:42,910 --> 00:13:45,340
hear that you went through that
experience and you started really
334
00:13:45,340 --> 00:13:47,680
thinking about isolation, loneliness,
335
00:13:47,710 --> 00:13:50,560
as you know, we both agreed, it is a
theme for people who are going through
336
00:13:50,560 --> 00:13:52,210
cancer, and going through a transplant.
337
00:13:52,240 --> 00:13:54,940
So that leads me into kind of, you
know, curious to hear your thoughts
338
00:13:54,970 --> 00:13:57,460
around social support and connection.
339
00:13:57,460 --> 00:14:00,130
We know that when going through a
transplant, that's so important.
340
00:14:00,190 --> 00:14:02,320
And my question really is
around how we would often
341
00:14:02,350 --> 00:14:05,170
encourage patients to reach
out to someone that they trust.
342
00:14:05,200 --> 00:14:08,050
You know, if they're experiencing that
isolation, that loneliness, you know,
343
00:14:08,050 --> 00:14:09,850
potentially per mental health as well.
344
00:14:09,880 --> 00:14:13,480
Is there advice that you would have
for those who provide that support?
345
00:14:13,510 --> 00:14:17,050
So any advice for any friends or loved
ones who may be listening to this?
346
00:14:17,400 --> 00:14:17,550
Of
347
00:14:17,550 --> 00:14:18,060
course.
348
00:14:18,120 --> 00:14:22,590
Alike's aim in the future is to
provide the Alike application for carers
349
00:14:22,620 --> 00:14:27,690
for loved ones, for people who are
experiencing cancer indirectly. Because,
350
00:14:27,810 --> 00:14:31,020
even though a loved one may have been
diagnosed with cancer, who's caring for
351
00:14:31,020 --> 00:14:33,630
the carers?
There you go.
Who was providing that support?
352
00:14:33,630 --> 00:14:35,730
So that's where we aim to go with this.
353
00:14:36,210 --> 00:14:38,970
But for now I think language
is really important.
354
00:14:39,870 --> 00:14:43,770
There's a lot of rhetoric around
cancer and whatever language and
355
00:14:43,770 --> 00:14:45,960
rhetoric people choose to use,
356
00:14:46,204 --> 00:14:49,775
in regards to cancer is very
personal, and some choose to address
357
00:14:49,775 --> 00:14:53,255
it in different ways. Such as, some
people like to call it the big C.
358
00:14:53,465 --> 00:14:53,765
Yeah.
359
00:14:53,855 --> 00:14:57,605
And again, for some reason,
it's about taking away that
360
00:14:57,605 --> 00:14:59,135
power that the word cancer has.
361
00:14:59,135 --> 00:15:00,454
So they refer to it as the big C.
362
00:15:00,454 --> 00:15:04,595
This is just an example, but for me, I
found the actually calling it what it is.
363
00:15:04,790 --> 00:15:07,579
Cancer.
Strips, stripped
that power away from it.
364
00:15:07,670 --> 00:15:08,510
It is cancer.
365
00:15:08,599 --> 00:15:10,280
It's this thing that we have to deal with.
366
00:15:10,280 --> 00:15:12,500
It's this awful thing
that we have to deal with.
367
00:15:12,770 --> 00:15:16,040
And it really allowed me to be open
and honest about it. Especially
368
00:15:16,040 --> 00:15:16,939
when I was going through it.
369
00:15:17,000 --> 00:15:19,370
I don't want to have to be worrying
about what other people are thinking.
370
00:15:19,370 --> 00:15:22,099
I don't want to have to be
considering everyone's feelings
371
00:15:22,099 --> 00:15:23,680
and emotions all the time.
372
00:15:23,680 --> 00:15:24,189
Exactly.
373
00:15:24,219 --> 00:15:25,420
Because that is draining.
374
00:15:25,420 --> 00:15:26,380
You have enough going on.
375
00:15:26,890 --> 00:15:27,339
You really do!
376
00:15:27,339 --> 00:15:31,030
So if anybody was to ask a question
where cancer would rear its
377
00:15:31,030 --> 00:15:32,740
ugly head, I would always.
378
00:15:32,930 --> 00:15:38,329
Be honest and say, this is why
you've got a two year gap in your CV.
379
00:15:38,359 --> 00:15:39,020
Why is that?
380
00:15:39,020 --> 00:15:43,819
Well, because of X. Like I
didn't date for X amount of time.
381
00:15:43,849 --> 00:15:44,209
Why?
382
00:15:44,239 --> 00:15:45,619
Because of cancer.
383
00:15:45,709 --> 00:15:48,560
And so it, I always gave it its name.
384
00:15:48,650 --> 00:15:51,949
And I think that's, what's really
important for carers, loved ones and
385
00:15:51,949 --> 00:15:57,199
friends. Is to be open and honest too. Their
feelings, whether that be fear, sadness,
386
00:15:57,199 --> 00:15:59,540
confusion are all completely legitimate.
387
00:15:59,569 --> 00:16:00,800
And I feel a lot of people.
388
00:16:01,320 --> 00:16:03,600
Say well, it's, it's their cancer.
389
00:16:03,600 --> 00:16:08,190
So I have to do whatever I can
to support that person. Put on a brave face.
Yep.
390
00:16:08,460 --> 00:16:09,540
Help them get through this.
391
00:16:09,570 --> 00:16:12,750
I can't be crying in front of them!
And it's, that's so respectable.
392
00:16:12,780 --> 00:16:17,280
That's so admirable that people do that,
but you have to do this together.
Yeah and
393
00:16:17,280 --> 00:16:19,260
validate your own experience
as that loved one,
394
00:16:19,550 --> 00:16:21,709
Or that friend, or that partner, you know,
you're going through this, on
395
00:16:21,709 --> 00:16:22,790
that journey with the person
396
00:16:22,790 --> 00:16:22,969
too.
397
00:16:23,060 --> 00:16:23,660
Absolutely.
498
00:16:23,829 --> 00:16:27,609
And, cancer is a massive
contradiction. From an experience.
499
00:16:27,640 --> 00:16:30,640
There'll be one day, there'll
be one morning where I'd go, I'm
400
00:16:30,640 --> 00:16:31,990
ready to speak in parliament.
401
00:16:32,020 --> 00:16:35,800
I'm ready to speak truth to power, to
change policy, to do this, to do that.
402
00:16:35,979 --> 00:16:38,050
An hour later, I'd be in bed crying.
403
00:16:38,930 --> 00:16:39,910
I can't do this.
404
00:16:39,969 --> 00:16:40,660
What am I doing?
405
00:16:41,199 --> 00:16:43,540
The rollercoaster from
one moment to the next.
406
00:16:43,540 --> 00:16:47,350
And I think it's a case of taking whatever
somebody says with a pinch of salt,
407
00:16:47,380 --> 00:16:49,150
slightly. Not taking it too personally.
408
00:16:49,150 --> 00:16:50,350
I've shouted at my mother.
409
00:16:50,560 --> 00:16:52,000
I've shouted at my boyfriend.
410
00:16:52,270 --> 00:16:53,140
I've been angry.
411
00:16:53,170 --> 00:16:56,350
Sometimes I've said hurtful things
because I am hurt and going through
412
00:16:56,350 --> 00:16:58,480
something that nobody should ever endure.
413
00:16:58,510 --> 00:16:58,600
And,
414
00:16:58,680 --> 00:16:59,370
you're vulnerable.
415
00:16:59,370 --> 00:17:01,439
And you're in that state and you're
not, you know, you're trying to
416
00:17:01,439 --> 00:17:03,150
self regulate your own emotions.
417
00:17:03,300 --> 00:17:03,800
Absolutely.
418
00:17:03,800 --> 00:17:04,020
Yeah.
419
00:17:04,145 --> 00:17:07,325
And some people avoid that, they go, I'm
treading on eggshells around this person,
420
00:17:07,325 --> 00:17:09,845
because I don't want to upset them,
but that is just part of the process.
421
00:17:10,204 --> 00:17:11,495
That's part of the experience.
422
00:17:11,704 --> 00:17:15,665
So open, honest conversation
and communication is essential.
423
00:17:15,715 --> 00:17:15,985
Yeah.
424
00:17:15,985 --> 00:17:18,565
And I like that as well in terms
of just being kind of a listening
425
00:17:18,565 --> 00:17:21,015
ear and, you know, knowing, as
you said, it's not personal.
426
00:17:21,115 --> 00:17:24,444
If one day, you know, as the loved one, the
person who's going through the transplant
427
00:17:24,655 --> 00:17:28,945
or the cancer treatment, you know, is in
a certain state or they are a certain way.
428
00:17:29,245 --> 00:17:32,965
It's because that's the reality, you
know, and it's validating that experience.
429
00:17:32,965 --> 00:17:36,025
And it's also checking in with yourself,
you know, well, how do I, how can I
430
00:17:36,025 --> 00:17:39,355
best show up for this person and myself,
they're both, you know, both important.
431
00:17:39,355 --> 00:17:40,765
So that's some really sound advice.
432
00:17:40,765 --> 00:17:41,425
Thank you for that Brad.
433
00:17:41,425 --> 00:17:44,395
What about then, patients themselves?
434
00:17:44,395 --> 00:17:47,815
So what advice would you give to other
patients who are going through a stem
435
00:17:47,815 --> 00:17:51,595
cell transplant? Perhaps one you wish
you had have had at the time or any
436
00:17:51,595 --> 00:17:53,365
learnings you can, you can pass on?
437
00:17:53,635 --> 00:17:54,235
Two things.
438
00:17:54,795 --> 00:17:56,925
With Alike, there is a
community waiting for you.
439
00:17:57,195 --> 00:17:58,425
And I don't mean to do a cheeky plug.
440
00:17:59,315 --> 00:18:00,395
That's why we developed it.
441
00:18:00,485 --> 00:18:01,415
That's why we made it.
442
00:18:01,805 --> 00:18:05,585
You have, the support that you
need in the Palm of your hand. At any
443
00:18:05,585 --> 00:18:07,535
place, any stage we're here for you.
444
00:18:07,595 --> 00:18:10,625
And so as the community, and that's
what we're working on is making sure
445
00:18:10,625 --> 00:18:15,695
that if it's lonely sleepless nights,
if it's stressing about a potential
446
00:18:15,695 --> 00:18:19,505
sign at a weekend, when all the
hotlines are closed, it's a weekend,
447
00:18:19,535 --> 00:18:22,595
weekend, weekend loneliness and
isolation and stress over symptoms.
448
00:18:22,595 --> 00:18:23,465
And, my temperatures up.
449
00:18:23,535 --> 00:18:24,585
But it's a Sunday evening.
450
00:18:24,585 --> 00:18:29,085
Who the hell do I call? Is a very real
experience I've experienced it myself or
451
00:18:29,085 --> 00:18:33,255
when my temperature is on the precipice
of being over 39, maybe it's 38
452
00:18:33,255 --> 00:18:34,675
point some thing. And you're starting to
panic. And start to feel worried,
453
00:18:36,425 --> 00:18:37,725
and you need to check in with someone.
454
00:18:37,725 --> 00:18:38,145
Do I call
455
00:18:38,145 --> 00:18:38,715
my CNS?
456
00:18:38,715 --> 00:18:40,155
Do I call the emergency line?
457
00:18:40,185 --> 00:18:40,785
What do I do?
458
00:18:40,785 --> 00:18:42,015
Do we go to A&E?
459
00:18:42,045 --> 00:18:43,845
But I'll be sat in A&E for four hours.
460
00:18:44,055 --> 00:18:48,165
It might not be anything. They might just
hook me up to fluid. It's like, what do I do?
461
00:18:48,345 --> 00:18:51,795
And we don't allow people to give
medical advice, or we ask people
462
00:18:51,795 --> 00:18:54,345
to take medical advice with a
pinch of salt, the same situation.
463
00:18:54,345 --> 00:18:55,725
This is one person's experience.
464
00:18:55,725 --> 00:18:59,415
So don't take it as gospel or biblical.
But, it might just be a conversation
465
00:18:59,415 --> 00:19:02,265
that you need to have with somebody that
will just go, oh, don't worry about it.
466
00:19:02,265 --> 00:19:04,995
Like I experienced this,
maybe wait a few hours.
467
00:19:04,995 --> 00:19:07,035
And if you're feeling
nervous, call 111.
468
00:19:07,270 --> 00:19:07,510
Yeah.
469
00:19:07,870 --> 00:19:07,989
To
470
00:19:07,989 --> 00:19:11,050
check in with them and just run
it past them, whatever you need.
471
00:19:11,320 --> 00:19:12,330
Just having that sounding board.
472
00:19:12,419 --> 00:19:15,120
And I think that's really
important and that is 24/7.
473
00:19:15,270 --> 00:19:15,540
Yeah.
474
00:19:15,600 --> 00:19:16,590
So that's the first thing.
475
00:19:16,590 --> 00:19:20,760
The second thing I think is really
important is patients, don't rush the
476
00:19:20,760 --> 00:19:25,379
process of recovery and don't apply
unnecessary expectations to you,
477
00:19:25,500 --> 00:19:27,149
your body and your mental health.
478
00:19:27,209 --> 00:19:27,479
Yeah.
479
00:19:27,510 --> 00:19:28,409
Because pressure is
480
00:19:28,520 --> 00:19:31,700
definitely not what your physical
state and your mental state needs.
481
00:19:31,730 --> 00:19:32,420
No, not at all.
482
00:19:32,450 --> 00:19:36,110
I'd be really careful of rushing
this, of I'm seeing other people
483
00:19:36,110 --> 00:19:37,520
bounce back from cancer so much,
484
00:19:37,520 --> 00:19:38,630
so I'm going to work at this.
485
00:19:38,630 --> 00:19:39,500
I'm going to work at that.
486
00:19:39,560 --> 00:19:40,160
It's it.
487
00:19:40,430 --> 00:19:41,000
It's a process
488
00:19:41,000 --> 00:19:41,720
you can't rush.
489
00:19:42,180 --> 00:19:43,710
So I think that is really important.
490
00:19:44,159 --> 00:19:48,600
Being aware of how to recognise long-term
effects, is part of that being patient.
491
00:19:48,720 --> 00:19:53,550
I don't mean being over prescriptive
and oh, that's related to cancer
492
00:19:53,550 --> 00:19:54,730
or this is related to cancer.
493
00:19:54,870 --> 00:19:57,990
This tweak in one of my
muscles, that might be cancer.
494
00:19:58,050 --> 00:19:58,379
Yeah.
495
00:19:58,680 --> 00:20:00,450
But over time I know.
496
00:20:00,540 --> 00:20:04,440
And I've started to recognise that
whenever I've got like a burst of
497
00:20:04,440 --> 00:20:07,980
energy and I'm having a fantastic
day instantly, I'll start to feel
498
00:20:07,980 --> 00:20:10,260
down, and I'll have a lack of energy.
499
00:20:10,350 --> 00:20:10,830
Yeah.
500
00:20:11,280 --> 00:20:12,810
And I now know that's fatigue.
501
00:20:13,350 --> 00:20:13,830
Okay.
502
00:20:13,870 --> 00:20:14,640
You can name it.
503
00:20:14,640 --> 00:20:18,280
You know, it's the actual biological
process in your body or, you know,
504
00:20:18,360 --> 00:20:19,980
physiological process I should say.
505
00:20:20,540 --> 00:20:20,870
Yeah.
506
00:20:20,900 --> 00:20:24,680
And not blaming my body's
like I've been pumped with
507
00:20:24,680 --> 00:20:27,410
chemotherapy nearly consistently.
508
00:20:28,065 --> 00:20:33,465
For since 2013 to 2017,
I was on long-term drugs.
509
00:20:33,495 --> 00:20:36,675
I had a bone marrow transplant and
we all know how harrowing that is to
510
00:20:36,675 --> 00:20:40,095
go through in terms of the treatment.
Chemotherapy for non-stop 10 days.
511
00:20:40,125 --> 00:20:40,365
Yeah.
512
00:20:40,755 --> 00:20:44,895
So if my body instantly goes, oh, you
are working me a bit too heavy, like
513
00:20:44,895 --> 00:20:46,595
you're running around meeting to meeting.
Signals,
514
00:20:46,655 --> 00:20:47,225
red alert!
515
00:20:47,375 --> 00:20:48,605
We're overworked
516
00:20:48,605 --> 00:20:48,815
here.
517
00:20:48,875 --> 00:20:51,965
Can we just have a chill out so it's like, right,
well, I'll work from home tomorrow.
518
00:20:52,235 --> 00:20:54,005
And it's just, it's managing it.
519
00:20:54,005 --> 00:20:55,745
And I've now learned how to manage it.
520
00:20:55,949 --> 00:20:57,300
It's not fighting against it.
521
00:20:57,720 --> 00:20:59,899
It's not rejecting it
and going no, no, no, no.
522
00:20:59,909 --> 00:21:00,929
You can get through this.
523
00:21:00,929 --> 00:21:04,830
It's just being really kind to my
body and to my own mental health.
524
00:21:04,860 --> 00:21:06,480
And I think that is
really, really important.
525
00:21:06,629 --> 00:21:10,409
Um, so being able to manage
long-term effects as well is, is key.
526
00:21:10,860 --> 00:21:12,179
But part of that is patience.
527
00:21:12,389 --> 00:21:12,629
Yeah.
528
00:21:13,010 --> 00:21:16,010
And I liked that as well because Brad
has quite the compassionate approach.
529
00:21:16,010 --> 00:21:18,080
You know, you sometimes it's
thrown around, you know, look after
530
00:21:18,080 --> 00:21:19,879
yourself and, you know, self care.
531
00:21:19,879 --> 00:21:22,820
But actually, as you just said,
there, it's naming it sometimes.
532
00:21:23,330 --> 00:21:25,580
As you know, today I'm
feeling really tired.
533
00:21:25,610 --> 00:21:27,330
Um, you know, I've been doing X, Y, Z.
534
00:21:27,680 --> 00:21:30,050
Oh, that's fatigued because my
body has been through so much.
535
00:21:30,080 --> 00:21:33,860
My mind has been through so much and it's
validating that and recognising that,
536
00:21:33,860 --> 00:21:37,370
and then meeting yourself as you just so
articulately said with that compassion
537
00:21:37,430 --> 00:21:39,410
and saying, okay, what can I do?
538
00:21:39,410 --> 00:21:40,430
What are my strategies?
539
00:21:40,430 --> 00:21:41,540
What fills my bucket?
540
00:21:41,780 --> 00:21:43,040
What's my coping mechanism?
541
00:21:43,040 --> 00:21:45,440
Is it to go to bed early
or talk to a loved one or.
542
00:21:45,605 --> 00:21:48,395
Work from home, you know,
depending on your responsibility.
543
00:21:48,395 --> 00:21:48,905
So yeah.
544
00:21:48,905 --> 00:21:51,755
I just think that's so inspiring
to kind of have that key advice.
545
00:21:51,755 --> 00:21:52,385
I really, yeah.
546
00:21:52,445 --> 00:21:54,695
I know a lot of patients will find
that, you know, really, really
547
00:21:54,725 --> 00:21:56,285
important too.
I hope so.
548
00:21:56,675 --> 00:21:57,185
Yeah.
549
00:21:57,755 --> 00:22:01,325
And then I feel like Brad, this is
a really key question because you're
550
00:22:01,325 --> 00:22:06,605
doing so much, so, um, I'd love to know
where anyone who's listening and myself,
551
00:22:06,635 --> 00:22:09,215
you know, where can we find out more
about your work and what you're up to?
552
00:22:09,505 --> 00:22:14,035
Well, we have a lovely new website,
which we put a lot of time and
553
00:22:14,270 --> 00:22:19,310
efforts and energy into, so that
is alike.org.uk, which really
554
00:22:19,310 --> 00:22:21,080
shares our story, our team.
555
00:22:21,110 --> 00:22:22,880
And we're constantly
developing that as well.
556
00:22:22,880 --> 00:22:25,220
So that's definitely going to be
a space where we want people to
557
00:22:25,220 --> 00:22:29,390
learn everything that Alike is, and
really be the home for us online.
558
00:22:29,450 --> 00:22:32,060
And people can follow us on Twitter.
559
00:22:32,540 --> 00:22:36,980
So we are at @AlikeUK, and they
can follow us on Instagram as well,
560
00:22:37,040 --> 00:22:43,115
which is the same, uh, Alike.uk and
for any of my NHS work, um, I, this
561
00:22:43,115 --> 00:22:44,254
is a bit of a long, but why not?
562
00:22:44,254 --> 00:22:49,715
If you're interested in the work that I
do with the NHS, england.nhs.uk
563
00:22:49,715 --> 00:22:52,595
/getinvolved/CYP.
564
00:22:52,955 --> 00:22:57,004
I work with an incredible team who work
really hard to make sure that children
565
00:22:57,004 --> 00:23:02,105
and young people's voices are at the
centre of policymaking and senior
566
00:23:02,105 --> 00:23:03,905
level decision making within the NHS.
567
00:23:04,274 --> 00:23:04,905
Amazing.
568
00:23:04,905 --> 00:23:05,594
That's incredible.
569
00:23:05,594 --> 00:23:07,155
And I feel like Brad, I don't know.
570
00:23:07,155 --> 00:23:08,405
You're kinda like an octopus to me.
571
00:23:08,405 --> 00:23:11,554
You've got these like eight hands and
like, they're just everywhere, but
572
00:23:11,554 --> 00:23:14,084
every single, you know, well, I guess
they're tentacles, but you know, in,
573
00:23:14,084 --> 00:23:18,574
In this, in this metaphor, you know,
so many incredible things. So absolutely
574
00:23:18,905 --> 00:23:21,264
I would encourage anyone to look at
what Alike's up to,
575
00:23:21,284 --> 00:23:23,195
and also to look your NHS work.
576
00:23:23,355 --> 00:23:26,505
But, you know, you bring in that micro
level perspective of, you know, this was
577
00:23:26,505 --> 00:23:30,195
my experience and here's how I'm going
to help inform policies within the NHS.
578
00:23:30,195 --> 00:23:33,375
And beyond at government
level to affect positive change.
579
00:23:34,905 --> 00:23:36,165
Yeah and, it is a lot of work.
580
00:23:36,315 --> 00:23:43,095
And I'm going to say that I do work very
hard, but it's driven by pure passion.
581
00:23:43,365 --> 00:23:43,635
Yeah.
582
00:23:44,025 --> 00:23:48,465
And when you love what you do, you
don't work a hard day in your life.
583
00:23:48,915 --> 00:23:52,745
I think that, I think that's the
term paraphrasing, but I absolutely,
584
00:23:52,805 --> 00:23:54,395
I absolutely love what I do.
585
00:23:54,725 --> 00:23:55,225
I do.
586
00:23:55,360 --> 00:23:58,600
Even though there are days
where it is quite intense.
587
00:23:58,629 --> 00:23:58,870
Yeah.
588
00:23:59,230 --> 00:24:03,580
But I know that I'm living my passion
and something that I'm very interested
589
00:24:03,580 --> 00:24:07,929
in and that's something that I would
always encourage people to do. Is what
590
00:24:08,400 --> 00:24:11,220
am I passionate about, especially
after facing something like
591
00:24:11,220 --> 00:24:12,690
cancer, live your life
592
00:24:12,690 --> 00:24:15,900
however you want to live it and find
your passion because that's when
593
00:24:15,900 --> 00:24:18,900
you will enjoy the work that you
do, which will then impact the rest
594
00:24:18,900 --> 00:24:20,250
of your life and your experience.
595
00:24:20,660 --> 00:24:21,440
Incredible Brad.
596
00:24:21,440 --> 00:24:24,320
I really do feel like you are a
role model for that in terms of,
597
00:24:24,320 --> 00:24:27,440
you know, taking that difficult
experience that you had and sort of.
598
00:24:27,870 --> 00:24:30,149
You know, playing with it in terms
of what am I going to do now, and
599
00:24:30,149 --> 00:24:33,120
then look at you now, you know,
you've launched your own charity.
600
00:24:33,120 --> 00:24:34,709
You've just done this incredible app.
601
00:24:34,709 --> 00:24:38,060
And you know, you're articulating,
you're also speaking about the NHS.
602
00:24:38,100 --> 00:24:41,189
You're doing such incredible
work, which also benefits others.
603
00:24:41,370 --> 00:24:42,629
And that's kind of the key thing.
604
00:24:42,629 --> 00:24:44,830
So, um, it's been nothing but an
605
00:24:44,960 --> 00:24:45,920
absolute pleasure.
606
00:24:45,920 --> 00:24:48,980
And I know many patients on family
members and loved ones and friends
607
00:24:49,280 --> 00:24:53,030
are going to find this so informative
and, and fascinating to hear your
608
00:24:53,030 --> 00:24:54,470
experience and what you're up to now.
609
00:24:54,500 --> 00:24:56,990
So, thank you so much for
coming on the Anthony Nolan Podcast.
610
00:24:57,850 --> 00:24:58,690
Thank you so much.
611
00:24:58,690 --> 00:25:00,520
And thank you for giving
me the space to talk about this.
612
00:25:00,520 --> 00:25:01,930
It's been absolutely wonderful.
613
00:25:02,140 --> 00:25:02,950
Thank you, Brad!
614
00:25:03,975 --> 00:25:08,205
For more information on stem cell
transplants and recovery, as well as free
615
00:25:08,205 --> 00:25:13,575
resources that you can download and order
visit our website, anthonynolan.org
616
00:25:13,725 --> 00:25:18,345
We also have fantastic supportive platform
that is our patients and families forum,
617
00:25:18,375 --> 00:25:22,515
where you can connect with others who have
had an experience of stem cell transplant.
618
00:25:22,679 --> 00:25:27,629
To access our online community, visit
anthonynolan.org/forum
619
00:25:27,689 --> 00:25:31,709
We also have our patients and families
Facebook page, where you can access
620
00:25:31,709 --> 00:25:36,419
our latest posts, information, events,
and much more. To hear more about
621
00:25:36,419 --> 00:25:42,300
this and our other supports, please
visit anthonynolan.org/patients
622
00:25:42,480 --> 00:25:46,649
You can also email
us at patientinfo@anthonynolan.org
623
00:25:46,830 --> 00:25:50,879
Or call us on 0303 303 0303
624
00:25:51,120 --> 00:25:51,570
Thank you