April 26, 2024 • 56 mins
In this episode, Laura talks to Sonia, member of the board of trustees at Breast Cancer Now.
Sonia speaks about her diagnosis of breast cancer and how it affected her personally and professionally. She tells Laura about how she believed black women don't get breast cancer, back when she was diagnosed in 2004, and how she works to improve diversity and awareness. Sonia also champions the importance of early detection of breast cancer and describes the promising research into the use of artificial intelligence (AI) in breast screening.
We’re Breast Cancer Now, the research and support charity. However you’re experiencing breast cancer, we’re here. For information and support, visit our website or phone our free helpline on 0808 800 6000 (UK only).
Download our breast cancer support app Becca.
You can also watch this episode on YouTube.
Key Topics:
0:24 Laura introduces Sonia
1:00 Sonia talks about being diagnosed with breast cancer
11:30 20 years on from a breast cancer diagnosis
15:49 Not realising that black women could get breast cancer
21:06 Telling an employer about a breast cancer diagnosis
24:53 How Sonia's co-workers reacted to her cancer
28:05 Becoming a trustee at Breast Cancer Now
30:28 Equality for people of colour
38:44 The potential of AI in breast cancer
41:05 Tips for discussing a cancer diagnosis with an employer
48:52 Tips for employers who have an employee with cancer
51:26 What needs to change in breast cancer?
53:17 Final thoughts
Sonia speaks about her diagnosis of breast cancer and how it affected her personally and professionally. She tells Laura about how she believed black women don't get breast cancer, back when she was diagnosed in 2004, and how she works to improve diversity and awareness. Sonia also champions the importance of early detection of breast cancer and describes the promising research into the use of artificial intelligence (AI) in breast screening.
We’re Breast Cancer Now, the research and support charity. However you’re experiencing breast cancer, we’re here. For information and support, visit our website or phone our free helpline on 0808 800 6000 (UK only).
Download our breast cancer support app Becca.
You can also watch this episode on YouTube.
Key Topics:
0:24 Laura introduces Sonia
1:00 Sonia talks about being diagnosed with breast cancer
11:30 20 years on from a breast cancer diagnosis
15:49 Not realising that black women could get breast cancer
21:06 Telling an employer about a breast cancer diagnosis
24:53 How Sonia's co-workers reacted to her cancer
28:05 Becoming a trustee at Breast Cancer Now
30:28 Equality for people of colour
38:44 The potential of AI in breast cancer
41:05 Tips for discussing a cancer diagnosis with an employer
48:52 Tips for employers who have an employee with cancer
51:26 What needs to change in breast cancer?
53:17 Final thoughts
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
This podcast contains the personal stories,opinions and experiences of its speakers, rather
(00:05):
than those of Breast Cancer Now. Welcome to theBreast Cancer Now podcast, providing support and
information to anyone affected by breast cancer.I'm Laura Price and I'm the host of the Breast
Cancer Now podcast. I'm a food writer and authorand I live with secondary breast cancer. Today we
are speaking to Sonia Gale, a trustee for BreastCancer Now with personal experience of a breast
(00:30):
cancer diagnosis in the workplace. Sonia workedin financial services for more than 30 years at
HSBC, Barclays and Ernst & Young. She's acommissioner for the Sheffield Race Equality
Commission and she's also involved with Women onBoards UK as a mentor and presenter supporting
diverse talent on boards. And she's here to tell usabout when she was diagnosed with breast cancer
(00:51):
and how companies can better support an employeewith cancer. Sonia, thank you for joining us.
Thank you for having me. It's great to have youhere. Could you start by telling us when and how you
were diagnosed with breast cancer, please? Oh mygoodness. So we're probably going back to 2004,
which was when I was officially diagnosed, butobviously hindsight is a wonderful thing. And I
(01:19):
now, well, I recognised during my treatment thatI'd had the cancer for probably several years, but
didn't realise. I was in Sweden actually with afriend who was filming and I tanked along. We were
in Stockholm and we hadn't gone very far from thehotel when I suddenly realised my legs were no
(01:44):
longer working. I was wonderful, I say can I takeanother step without falling over? I've never had
a sensation like it. And I remember standing therefeeling a bit of my friend looking at me saying,
what are you doing? And I said, I felt ratherembarrassed. I said, I can't feel my legs. She
(02:11):
said, don't be silly. I said, no, seriously, Icannot feel my legs. And the concierge came,
helped me back to the hotel and they took me to thehospital, took some bloods and didn't say
anything. They just, as they said, it may have beencramp, a trap nerve. And the doctor said, when you
(02:33):
get back to the UK, you need to see your GP. And oddlyenough, I had been trying to see the GP, but my job
was so demanding. It was finding time. I wasworking 60, 70 hours a week. Financial services is
very demanding. I was a senior director. And youput it down to overwork, I need to slow down. But
(02:57):
every now and again, I would get bouts of extremetiredness. You just punch through it. And in fact,
I had managed to see the doctor about a year before.We just prescribed iron tablets, which I took
diligently. But on that day, there have no use tome. And when I did return, I managed to see my GP, who
(03:19):
was a wonderful lady, Dr. Jean Parke, who's nowretired. And I can honestly say she saved my life.
She listened. I didn't know I had breast cancer. Iwasn't sure what was wrong. I just felt odd. I
didn't have my usual energy levels. And I felttired at the most odd times. And she noticed me
(03:45):
scratching my breast and said, Oh, what's that?And because I sometimes used to get eczema, I just
said, Oh, it's just a little rash. And I'd neverknown anybody in the family who'd had breast
cancer. So I had no prior experience or knowledge.And she said, Oh, let me have a look. And she said,
(04:06):
I'd like you to see someone. So I saw her on theWednesday. I then had a letter, which was hand
delivers, which arrived on the Saturday from anappointment at Lewisham Hospital in London on the
Monday. When I arrived, I didn't realize Ithought, why am I in the breast clinic? I normally
(04:27):
go and see a dermatologist. So even then, I had noidea it was cancer was the last thing on my mind. And
I popped in and saw him. And I was chatting away andshowing him my breast. And there was an African
nurse who was there in the room. And she wassmiling, not saying anything. And I, you know,
(04:50):
obviously, now I realized she's thinking, Oh,wait for it. The penny will drop. She's clearly an
intelligent woman. Just give it time. And he wastalking when he said, Hmm, I don't like the look of
this, I'm going to do a needle biopsy. And thenwe'll get you booked in. And I said, what for a skin
(05:10):
rush? And he stared at me and he said,miscalculated. He said, I really do believe that
this is breast cancer. And I said to him, don't besilly. I said, no one in my family gets breast
cancer. I said, then black women don't get breast.I actually said that. Anyway, Wednesday, within
(05:34):
48 hours, I was at Guy's and St Thomas' Hospital,running around getting various scans. And it was
stage, it was quite advanced. It was in my lymphnodes. They could see hotspots on the back of my
lung, and at various other places. And they said,there's no time to waste. We need to operate. So you
(06:03):
can imagine this is less than a week. And it was all awhirlwind. I remember speaking to my partner
thinking, I wonder if they've made a mistake. Isaid, how can I have cancer? Now I'm walking
around. I haven't lost any weight. And I felt okayother than this tiredness. And they did operate
(06:27):
and it was cancer. And then of course, it's not justremoving your lump, but that's when your
treatment really starts. So what treatment didyou have? So they did a local wider excision. So
they were able to preserve all my bits. They werejust a little bit smaller, which aesthetically
(06:51):
was quite nice. So there's all, you know, so therewas a bonus. And then I had to take Tamoxifen. And of
course, because my background was policy, I did alot of research. I sat down with the oncologists.
We talked through the different treatmentoptions. And they offered me, they knew what they
(07:13):
said was an innovative form of chemotherapy, but Idecided to go with a tried and tested chemo. Even
today, the smell of my hair makes me feel slightlyodd. So I tried to avoid going back to guys anywhere
near where they're doing the treatment becausethe smell is very triggering. But he did save my
(07:37):
life. I lost all my hair. But my hairdresser, we hada shaving session. So, you know, it was all about
getting prepared. And my partner, he shaved hishead as well, not that you had much to begin with,
but we had a head shaving session with a little sipof champagne and just tried to stay positive. And
(08:03):
oddly enough, I think, although it was a shock, Irealized when I was in the hospital that actually I
was one of the lucky ones, one that they'd found it,that my GP had taken the time to listen and just look
at my body holistically. No one goes into thedoctor and says, Doctor, I think I have cancer. I
(08:30):
mean, maybe they do today, but back then I didn'tknow what was wrong. And she was skilled at
listening, looking at all the hidden cues. You sayone thing, but your body says something else. And
because she acted so promptly, she picked up thephone she didn't draft a letter, she knew the
(08:52):
doctor, Lewis said, I really need you to see mylady. And remember, this was on the NHS. So, you
know, I will always be a fan and an advocate for theNHS because on that occasion, although I'd never
had cause to use it, when I needed it the most, itcame to my rescue. I think also I benefited from my
(09:15):
postcode because where I lived, we came within theguise and said Thomas's hospital catchment area.
And that's one of the best oncology centres inEurope. So I had fantastic care. But I think also
because I was able to read technical data, Iunderstood my treatment, and I could make an
(09:38):
informed decision. So I wasn't, I wasn't passive.Yeah, I did ask them and and I think once they
realise that you've done your homework, there is adifferent relationship between yourself and
your oncologist, you can actually, I'm not anequal and I'm not a specialist. But I think he was
impressed that I took the time to read about thedifferent forms of treatment. So I was happy to
(10:03):
take my pink bullet to Moxifen, which I tookdiligently for just over five years. And I also had
to have Zolodex injections, which was mysuggestion because my I had estrogen receptor
positive. So I said, well, that's good, but it'snot the other one, because if it's my hormones
(10:25):
raging out of control, then that's what'streating the cancer. So let's shut them down. So I
had to have tummy injections, which were quiteuncomfortable with the Zolodex, but it did shut
down my ovaries. And then of course, there's theother stuff like hot flushers. And actually the
(10:45):
wonderful thing that I find in 2023 now is peopleare taking the menopause very seriously. 2024
even. Yeah, and 24. Yes. And with us back then, itwas something you just had to put up with. But of
course, when you're having chemical treatmentsand breast cancer, they don't tell you about the
(11:09):
fact that it shows you into an early menopause. Andthe hot flushers were just ferocious. Yeah, well,
there's so many things I want to pick up on from whatyou've just said, and so many of it, so much of it
that I relate to, including the Zolodexinjections and the Tamaxophen and the wide local
excision and so much more. But you mentioned thatyou were one of the lucky ones, and we are now 20
(11:34):
years on from that diagnosis. So I just want to askhow you're doing now health wise. I'm healthy. I
feel I, you know, I walk, I mean, I moved as born inYorkshire and I returned. You know, one things
with COVID, and we lost some wonderful people andloved ones. But it did reconnect me to my place of
(11:57):
birth. And where I live in Sheffield is one of thegreenest cities. And you're right on the doorstep
of the Peak District. So I do a lot of walking. And Ican still travel to London and do things remotely.
So, you know, so that was one of the things I think weCOVID, it did make people think about work, life,
(12:19):
violence. Oh, that's wonderful. I'm fromHuddersfield, and I grew up 15 minutes from the
Peak District as well. So more, more, moreparallels. Yeah, I'm glad you're in the
countryside now. But no sign of breast cancer. Andyou know, as far as you, you're aware you've put
that behind you. Yes, I mean, it took a few years. Iwould say, I mean, it's 20 years now. If you told me
(12:45):
then, you and I would be here today, I would neverhave believed it. Yeah, in my head, I kind of
reconciled that I might have 10 years, ifunfortunate. But actually, I was one of that small
percentage, 15%, who really responded well to thetreatment. I think also maybe changing my
(13:10):
lifestyle as well. So, drinking less, eatinghealthily, doing a little bit more exercise,
trying to stay positive. And so I get my, my regularcheckups. And they are very robust. And touch
wood, it's always been very good. No signs of anyreturn. And you spend probably the first couple of
(13:38):
years waiting every, you know, you're listeningto your body at night. And every little rumble and
gurgle and twitch and pain you think, has it comeback? But then there comes a point at which you
think I can't keep waiting, you just have to get onand live your life. And I think it's that
(13:59):
acceptance that actually the end, if you want tocall it the end, is something that happens to all of
us. And the only thing you can try and influence isthe manner of how you go and you make sure that
you've done all the things that you want to do andhave no regrets. Or you're living in fear. And
(14:21):
somebody made the thing that actually cancer cangive you time to put your affairs in order. It's one
of the, I wouldn't say that there's an upside tothat, but actually my father died from a heart
attack. And it was very sudden. One day was with us.And then the next day, he'd gone. And I remember
(14:47):
the, you know, the devastation and how it affectedmy mother, because they'd been together for such a
long time. And she'd noticed something wasn'tright, being no men and men and, oh, it's nothing.
And at least with my cancer, I was able to talk tofriends. I was able to reconcile with with with
(15:11):
other friends and family members who I hadn't seenfor many years. And you kind of put your affairs in
order. And it did enable me to change my mindset.And maybe I'm a better person for it, but it
shouldn't have taken cancer. To reach thatepiphany. But but I didn't reach it. And I'm
(15:31):
delighted to still be here. Well, I'm delightedyou're still here as well. And it's so good,
especially on this podcast to hear these positivestories, you know, someone who has survived and
thrived for 20 years. It's just it's justfantastic to hear. There was something that you
said just before, which was 20 years ago, youthought black women don't get breast cancer. I
(15:53):
wanted to ask, why do you think that you didn'tthink that you could get breast cancer? I think it
was because when you saw all of the images, whenthey talked about breast cancer, it was always
somebody who looked like she was from the homecounties or the Women's Institute. So not even
(16:16):
from color, but almost seemed like a very middleclass type of disease. And that's because all the
other women who were getting it were just notvisible. So of course, I never saw anybody who
looked like me who had cancer. And of course,within the community, even those who did have it
(16:39):
kept it very quiet, even from close family. And itwas only after I had been diagnosed and gone
through my treatment. And then I started talkingto other family members that I then realized that
in fact, there had been incidents of breast cancerin our extended family, but it was just never
(17:01):
discussed. I'm really interested to ask how muchyou think that has changed in the last 20 years. Do
you see more visibility now for people of color interms of cancer diagnosis and treatment? Oh,
absolutely. It's changed and improved so muchmore. And I think obviously, the work of breast
(17:24):
cancer now, but certainly, I think we've movedbeyond that image that breast cancer is the
something that somehow blights the white middleclasses. And actually, it's a scourge can be
impacted. And if you look at the fact that so manypeople are being diagnosed, you would always say
(17:53):
that it's an epidemic. And actually, what'schanged is that more people like me are living and
moving beyond breast cancer, whereaspreviously, you get it and then you would die. And
that would probably because of late diagnosis.But what's changed is that people are being
diagnosed a lot earlier. And also, I think becausepeople are seeing it on the internet, you have
(18:21):
various advocates, there are a lot of youngerwomen who are getting breast cancer and being very
vocal about their experience and reallyencouraging people to check their breasts to be an
advocate for their own well-being, to be pushingin demand to see their doctor and to request a
(18:45):
referral, which is their right. And just makingsure that people are empowered and removing that
stigma. Breast cancer isn't something, it's notcalmer, it's not payback for something you did in a
previous life. It's not something that you'veeaten. It's not a sign of demonic possession or
(19:10):
that you're somehow not worthy in the eyes of theAlmighty. It could be down to just genes. It could
be because of your lifestyle. It could be, as Isaid, genes or family history. There are so many
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things, but what I try and do is to say to people,it's not something to be ashamed of. Anybody can
get breast cancer, even men. And it's no respect ofage or colour or your sexuality. And the thing is,
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once you think you have it, get it diagnosed, whatyou need is a piece of mind. Is it cancer? Is it not
cancer? And if it is cancer, what kind of cancer doyou have? And what are the best treatments for that
kind of cancer? And if you don't know, then come toBreast Cancer now, or there are so many wonderful
(20:15):
cancer charities out there who can help give youthe facts and insights and support to help you get
through it and move beyond it. And in the firstinstance, if you're in the UK, go to your GP
because, as we both know, you can have incredibleexperiences on the NHS and with your GP. It's just a
(20:37):
case of reporting whatever symptoms you've got.And thank you also for saying that it's nobody's
fault that we get cancer because I think that a lotof listeners, including me, have experienced
that thing of, was it something that I did? Is thiskarma? Or is it something that I've eaten? Or is it
the fact that I've drunk alcohol or I've smoked orI've partied, you know, in my 20s or something? So,
(21:02):
yeah, that's a really great message to have sharedwith us. Now, I know you have some stories about
your experience with cancer in the workplace.Could you start by telling us where you were
working at the time and how your employer reactedand how, in fact, you broke the news if you did break
the news to them? Well, I was in a very interestingposition. I can laugh about it now, but I was
(21:29):
working for a large bank just before my diagnosis.I had resigned from the bank to stay on with a
regulator as a contractor. When I told theregulator, I think there was shock, but I was
(21:50):
fortunate that the person that I reported to, shewas very supportive. And the work that I'd done for
them, she understood the financial impact on me.But I did feel not obligated, but, you know, I felt
that I owned them a duty of care to return and get ondoing the work. And they did make all of the
(22:20):
reasonable accommodations to make me feelcomfortable. I could, we didn't really do so much
remote working back then, but I was allowed to doall my research from home and only come into the
office two days a week. So even during my chemo, Iwas still working. And it did slow me down
(22:43):
mentally. You know, my brain, which I almost tookfor granted, which would fire suddenly, it was
taking just, I noticed it. But I think deep down, Ithought to do the job that I'm doing, the skill sets
that I was being paid for, I thought, can I continueto work at that level? And so even though I got
(23:08):
through it, I realized that I was not going to be thesame and I would need to reevaluate my lifestyle.
And also the type of work that I was doing and moveaway from that high pressure, high performance,
full on, where you're working all hours, andyou're out and about, I was fortunate that I was
(23:34):
working in a very supportive environment. Butthen I talked to other people who had terrible
problems, they were being made redundant, eventhough their employer knew that they might be
unwell. And I wouldn't say it's somethingpeculiar to financial services, but I would say in
(23:56):
the private sector, there's almost thisunwritten rule, yes, you get paid a lot of money,
but you only get it as long as you're fit andhealthy. And the minute there's sign of weakness,
then both parties know that's the end of it. Andthere's usually a party in other ways. And then
(24:17):
what you try and do is negotiate a nice settlement,which I was able to do. So financially, yes, I had to
make some sacrifices and change my lifestyle. Butthe impact on me was much less than it would have
been for other people, some of whom were literallyon the poverty line, and having to sign on, I never
(24:43):
got to that stage. But it did feel uncomfortable attimes. And had I not been working, it would have
been tricky. Did you experience at work anyinsensitive or discriminatory comments when you
were going through your treatment, or in terms ofyour diagnosis? There would be, I think the people
(25:06):
who didn't realise that I had it. So it was keptreasonably confidential. I was able to get a wig.
So most people didn't realise that I was even sick.I never lost any weight. Even when I was going
through the chemo, they talk about the chemo glow.So people kept saying to me, have you been on
(25:27):
holiday? And you're having to make excuses. Sopeople would make comments. I guess there's the
stereotype that people think what cancer is, thatyou're like a walking skeleton and that you can
tell. But actually, people respond differently.And you can see people who look very healthy. And
(25:53):
then a few weeks later, they're gone and you thinkthey had cancer. You said, really? Where did that
come from? So people would make commentsincentively not realising that I had cancer and I
was going through treatment. And I wouldn't sayanything to not, you know, because it wasn't said
in malice. And I thought maybe I would have said ormade those assumptions before I was stricken
(26:20):
myself. So I would almost say I was a silentobserver watching people making some of the
comments that probably I made when I was ignorantand didn't know any better. And then you, and I
remember thinking, you know, once I finish, I needto retire early so I can actually give something
(26:44):
back. Because in my darkest days when I reallythought the prognosis looks really bleak, I spoke
to a wonderful woman who just provided thesounding board and just explained to me, listen,
there are women who've had similar diagnosis toyou and they've got cheroid. And she was very
(27:11):
matter of fact, a lovely Geordie lady. And she justgave me the kick up the bum that I needed to stop
wallowing self pity. And as bad as you think you'vegot it, there are others who are suffering far
worse. She said, you've got money in the bank. Shesaid, you don't have to worry about paying your
(27:33):
mortgage. You have your family around you. Andyour employer is supporting you. And you seem to
have really good treatment on the NHS. And Ithought, actually, for, you know, and yes, I am a
black woman. But I think because I was in London, Ihad the right support network. I was able to take
(27:59):
advantage and benefit from the best of the NHS. Itseems you were fortunate on many counts. Is that
that early retirement that you took, is that whatled you to become a trustee for Breast Cancer Now?
Yes, yes, it was, I'd made the decision that if I gotto 55 then I would quit and take advantage of my the
(28:26):
retirement benefits and I applied to BreastCancer Care thinking that I'd be a volunteer. And
actually talk to women who look like me, and otherwomen, particularly those who may be in associate
demographics where they don't have access to allthe amenities, and to give that voice of hope and
(28:51):
inspiration and share my experiences. And when Ispoke to Breast Cancer Care, because my
background in policy, risk and governance, theysaid, well, actually, could you join us as a
trustee? And I remember thinking, oh, am I jumpingout of the frying pan into the fire having just
resigned from financial services? But I've lovedit. And I continue to enjoy it. And being part of the
(29:20):
board, being engaged in the strategy and thedirection. And one of the things we talked about at
Breast Cancer Care, and I said, it's wonderfulthat we focus on helping women and men to think of
life after cancer, and about living, but livingwell. I said, but wouldn't it be great if we could
(29:45):
also tackle the research and find a cure, or someform of early diagnosis that can give people that
reassurance and make sure people are getting theright treatment that's tailored for them, rather
than the sort of cheek dip approach that I wentthrough. And so, you know, within two years, we
(30:09):
were having, you know, the merger discussionswith now, and we are now Breast Cancer now. And
we're having a real positive impact and influenceon how Breast Cancer is being tackled here in the
UK. I know you do some work separately fordiversity on boards around the UK. Do you also do
(30:36):
diversity work within Breast Cancer now, or do youhelp support the strategy in terms of, you know,
making Breast Cancer more visible for people ofcolour? Yes. So, of course, after the George Floyd
incident where I think there was this light bulbmoment for most of the world, for somebody like me,
(30:59):
I'd always been aware that actually what theGeorge Floyd incident meant was actually it
brought our white allies felt that they couldstand up and make their voices heard as well. And
it's been wonderful to see that shift inunderstanding and the recognition of
(31:22):
inequalities. And when we talk aboutinequalities, it's interesting when I think
about my own experience with cancer, and also whatwe saw more recently with COVID and people, sort of
when COVID hit looking and thinking, why so manyblack and brown NHS people getting hit by COVID?
(31:47):
But of course, you know, COVID isn't racist, andneither is Breast Cancer. These are things of
opportunity, and the more opportunities they getto access you, the greater your chances of
actually either getting COVID or indeed beingimpacted by cancer. And so of course, things like
(32:12):
lifestyle, accessing a GP, assuming that there isa GP practice within your immediate locality. The
type of work that you do if you're gig economy orshift worker, again, that will all limit your
ability to get that GP appointment. Theexperience I had with my GP, I don't think those
(32:37):
with the way the NHS has gone now and the increasingdemand on its services. It does worry me that
people may have breast cancer, but it's not beingdiagnosed because they cannot get into to see
their GP because you have to be referred. I think aswell, one of the things that I was never aware of as a
(33:02):
white skinned patient is that people of colouralso experience difficulties in terms of access
to wigs that are suitable for them, lymphoedemasleeves, all sorts of things that, you know, I just
would never have realised was lacking for peopleof colour. Is that something that you experienced
as well? Yeah, absolutely. And in fact, I rememberlaughing when I had my chemo and they showed me the
(33:29):
wigs they had available and the women looked at meand we looked at the wigs. There were sort of
different shades of blonde, ash blonde. I thinkthere's a red one and one that was sort of jet black,
which would have been fine had I been sort of Asian,but not really suitable for me. But again, I'd
(33:55):
already realised that. And so my hairdresseractually did a tailored custom wig for me, which
matched my hairstyle. And she cut my hair had apixie cut. And so we did the wig in the same cut. And
then we shaved all my hair off. So most peopledidn't even realise that I had lost my hair,
(34:18):
because I had a tailored wig. And then with thelymphoedema, I was able to get private lymphatic
drainage, which I had paid for privately throughmy private medical insurance. So I never had the
dreaded lymphoedema. And I didn't have to wear thesleeves. But again, not everybody has access to
(34:44):
that. And yeah, and you see that in so many walks oflife, where you can't get things that are tailored
to match the colour of your skin, and nobody wantsto walk around advertising the fact that, oh, look
at me, I have cancer. But then again, you see some ofthe younger girls, and they're getting wonderful
(35:06):
tattoos done on their head. And they're happy to beproud and show their shaved heads. And that's
wonderful. If there's anyone, any people ofcolour listening to this podcast today who are
struggling with access to wigs or to lymphoedemasleeves, which we should explain lymphoedema is a
(35:29):
very painful arm condition that some peopleexperience after breast cancer surgery. Is there
any direction you could point those women in tohelp find the services that they need? Yeah, come
to breast cancer now. We have a wealth ofinformation. And we also have our app, Becca, as
(35:50):
well, which provides some useful hints and tints.And in fact, there's probably more information
available now than there would have been back in2004 or 2005. The internet is a washed YouTube.
I've seen some wonderful adverts where people aremaking their own lymphoedema sleeves and just
(36:12):
ordering material from a very large onlineretailer, who I won't name. But there's so many, in
fact, there's so much that you can get. And there'ssome wonderful groups which you can join, which
are focused very much on different groups,whether that's LGBTQ plus, or whether that's by
(36:38):
your ethnicity or by your religion, because it'snot just black women, but also South Asian women,
whether you're Hindu, Muslim, or Buddhist. Thereare all kinds of different support networks out
there. And you can find some that are UK wide orspecific to your town or city. But certainly
(37:04):
there's a lot of information on the breast cancernow website, where we can signpost people to where
they can get support. And that support is free. Youdon't need to pay for it. And also, as part of your
diagnosis and treatment, if you are going throughtreatment, the breast cancer care nurses have a
(37:27):
wealth of information and are very supportive.But of course, you need to get referred in the first
place. So for me, the real challenge is aroundearly diagnosis, because if you don't know that
you're sick, every day that ticks by, thatmalignant growth is sitting inside you. It's like
(37:52):
a ticking time bomb. The quicker they can get to it,the better the outcome. And even if they don't get
to it soon, well, hopefully I'm an example thatthere is still hope. And even if it gets into your
lymph nodes, if it's treated, and if you respondwell, and the treatments that we have now, every
(38:15):
year, there's something new coming out. And ofcourse, with the growth of AI, where we're seeing
breast cancer treatment, which is tailored toyour physiology, which is which is fantastic.
Then again, that's just increasing your chancesof a successful outcome. Yeah, well, we'll put a
(38:36):
bunch of those links that you mentioned in the shownotes of this episode for anyone who wants to look
for resources and advice. I'd just like to ask youabout AI, artificial intelligence, because I
don't know much about what's being done with AI andbreast cancer treatments. And I don't know if it's
relevant in diagnosis as well. Is that somethingyou can tell us more about? Well, I think the one
(39:02):
area where AI is being tested is obviouslyradiography and doing the scans, because
obviously when you have your scan, then you'rereliant on a skilled radiographer to review that
scan, and being able to look at the scans and say, isthat cancer? And and now you've got AI systems that
(39:28):
can just race through ultra fast and getting to apercentage, which is approaching that of a
skilled radiographer. So the challenge you havein all cancer diagnosis, not just breast cancer,
is that early diagnosis. And of course, it takesmany years to train a radiographer. And a lot of the
(39:56):
great radiographers that we had have eitherretired or reaching retirement, and we just can't
replace all of them. So AI, this is an area where AIcan be a real benefit, because it can go through
more scans more quickly. And the quicker it can dothat, and with great accuracy, the better you as a
(40:22):
patient can then get that reassurance. So ratherthan waiting, maybe a week or two weeks or maybe
longer, you might get confirmation within 48hours. Brilliant. It sounds fantastic. And it
sounds like something that could ease the strainon the NHS as well. Although of course, we still do
need all of those oncologists and nurses andradiographers to deliver the results and to talk
(40:47):
to the patients. And I very much hope AI neverreplaces our doctors and nurses entirely, but
it's great that it's becoming a support in someways to the services that we need. Just moving back
to breast cancer and diagnosis in the workplace.You were fortunate that you had a good experience
in the workplace when you were diagnosed withbreast cancer. Obviously, lots of people don't
(41:11):
have such a great experience. Is there anythingyou would say to, first of all, to employees who
have a cancer diagnosis and want to approach theirworkplace about what things that they might need?
I think I would say it's about be, you know, prepareyourself and be ready to be your own advocate.
(41:39):
Although my experience with my employer wasn't asbad, that was more through my own efforts rather
than my employer. And I would say to any employee,try not to, and it's not always easy, but you never
(42:00):
want to be wholly reliant on your employer. It'syour health, it's your life. You are the best
person to manage that. And so it's about makingsure you have the right resources around you. And
some of those will be the employer. So look at thebenefits package. What support do you get? Is
(42:28):
there a well-being health check? A lot oforganisations offer it. It might be free. So make
use of it. And also, you know, find out from otheremployees, you know, whether it's a new job that
you're going for. A lot of people just look at thesalary, but I always say, look at the overall
(42:53):
benefits package. You know, it's not just aboutwhat they're paying you, but actually if you get
sick, how many weeks sick leave do you get full payon? And you'll be amazed. Some employees are very
generous, others less so. So it's about beinginformed. And looking beyond just the numbers.
(43:18):
And also looking at, you know, if people do getcancer, have a look at the board members, have a
look at their website, read their annual report.You know, what do they say about supporting cancer
charities? Or, you know, do they have employeewell-being? What provisions do they make if you
(43:42):
get sick? You know, can you work from home? Can youget additional support? And when will that
support be provided? And again, I think goodemployers are becoming, you know, very focused on
well-being. And some employers do it very, verywell. They may not always advertise it. And some of
(44:08):
this stuff is there. And I talk to staff and say,well, you do realise your firm offers this, they
say, do they? And they haven't looked and you go, soit's there on the employee benefits website. You
have to, you know, take advantage of it. Youmentioned at the beginning, when you were talking
(44:29):
about your diagnosis, you were working 60 to 70hour weeks in financial services, very high
stress, very long hours type of industry. I had afairly similar experience where in my 20s,
throughout my 20s, I was also working in a sort offinancial services role, similar working
(44:50):
incredibly long hours, incredibly high stress.And my cancer diagnosis came at the end of that six
year period of stress where I just moved to a newjob. But I remember in the years leading up to my
cancer diagnosis, which was when I was 29, I had hadother kind of stress related illnesses like
(45:11):
shingles and acne and just, you know, things thatwere much more minor. But where I would go to the GP
and they would say, are you in a high, you know, thejob that you have, is it very, very demanding and
intense? And can you take some time off? And theywould always say things like, can you improve your
work-life balance? And can you take some time off?And of course, when you're in one of those jobs, or,
(45:35):
you know, you're in a similarly demandingsituation where perhaps you've got young
children, and you're also working two jobs andyou're working shifts or yourself employed, it's
always incredibly difficult to take that time offthat the GP recommends, because you can't
financially, you can't lifestyle wise, you justcan't. So is there anything that you would
(45:57):
recommend to someone who is perhaps in a similarposition and hasn't got a breast cancer
diagnosis, but is feeling like if they carry on atthe pace that they're at, then they will be, you
know, diagnosed with some kind of serious illnessat some point down the line? You know, that's a
(46:18):
great question. And one of the things I say when I'mtalking to potential board candidates, I always
say to them, no one ever got to retirement wishing,or if only I'd worked harder. And it usually gets a
laugh. But the point I'm making is, the things thatare really important is your health, friends, and
(46:47):
family, and well-being. And so when we talk aboutmaking adjustments to our lifestyle, and I use my
own example, I was working so many hours, I was on agood salary, but I didn't even have time to go
shopping. So I had a very healthy bank balance. Butactually, could I have managed on half of that
(47:11):
money? Probably. And I understand it's a bit likebeing on that treadmill. And it's very difficult
to step off. So actually working full pelt can maska lot of underlying issues. And I would always say
(47:31):
to people, you cannot function well if you don'thave your health, if you're not at your maximum
stage of well-being. And so it's about givingyourself a chance. And it's about looking at your
lifestyle and saying, okay, do I need to workharder? Or actually, do I need to work smarter? And
(47:59):
if your employer can't support you in that, thenfind another employer. If you're skilled, if you
have a special talent, one employer may not treatyou or may not give you the flexibility, whether a
competitor might. And you may have to take maybe a5% cut, or you may even get a pay rise. And it's a win
(48:28):
and win. And although it's said that it took COVIDto lift the scales, we do at least now have a
recognition around hybrid working. And I thinkthat gives people more opportunities to pace
themselves. You don't need to be running full pelt24 hours a day. The majority of companies and
(48:55):
leaders that I speak to, a common thread across allof that is they refer to their staff, their people,
their employees, whatever term they use, as theirmost valued asset. And I saw, well, that's
interesting. Because if you value that asset somuch, why would you treat it in this manner? If you
(49:20):
have something that you love and which isprecious, then you protect it. And that means not
just saying the words, but actually providingthat infrastructure. So things like well-being,
how do you respect that? Treat your staff well,because by and large, you will see that payback in
(49:47):
terms of productivity. But when you look at anorganization where there's incidences of sick
leave, all they're being taken to tribunals, allthere's lots of complaints. These are all the
warning signs that notwithstanding, we value ourstaff that you have a problem and you can't ignore
(50:13):
it. And the solutions are quite simple and don'tnecessarily require money. And it's about having
people like you in those companies who areactually standing up and saying these things,
because everything that you've just said reallyresonates with me. I've heard time and time again
companies talking about well-being, just as abuzzword, but they don't necessarily mean it and
(50:36):
they don't show that they value those employees asmuch as they say that they're going to value them.
So yeah, I mean, actually respecting people'sholidays, actually respecting people's
weekends, respecting people's downtime,people's lunch hour, not many people even take a
proper lunch hour, because we're just so on. So Iwould say I recommend sitting down, turning your
(51:01):
phone off, reading a book, reading somepamphlets. Breast Cancer Now has so many
wonderful resources that are on paper that youdon't have to read online, even though there's
everything you could possibly want online aswell. And you have to be on your some kind of device
to be listening to this podcast. So I know how hardit is myself to switch off. But you've raised some
(51:24):
absolutely wonderful points. So thank you forthat. I would like to ask you the question that we
ask all our guests on the Breast Cancer Nowpodcast, which is if you could see one change in
diagnosis and treatment of breast cancer in thecoming years, what would it be? Oh, we've seen so
many advances. And you obviously want that tocontinue. I think AI, it can be a wonderful tool.
(51:57):
It's not a replacement for a doctor. But it can be agreat tool for early diagnosis. I think the Holy
Grail is a simple blood test that can detect cancerin a meaningful way. And then aligning that to a
(52:20):
tailored treatment, which is suitable for you andyou alone. And that treatment is designed to
maximise the best outcomes for you. And I think ifwe can get to that, then I would say we've probably
(52:40):
achieved as a as a charity, what we set out toachieve. Which is for everyone to be diagnosed
early. And when they are diagnosed to live and livewell. Yeah, that would be absolutely fantastic.
And it's something that we're seeing acrossdifferent areas as well. I know that there are also
(53:01):
ways that you can tailor your diet now according toyour own particular physiology and everything
else. So really exciting and interesting thingscoming out with AI and with personalised kind of
health services. Tonja, is there anything elsethat you would like to share with us today with
(53:22):
regards to your own breast cancer experience,your work with diversity, your work on boards and
your work with cancer in the workplace? Try not todespair. There is always hope. There are some
wonderful people out there who can help you, whocan listen. And this is just not, this is not you.
(53:47):
This is something that affects all of us. And youmay not have cancer yourself. You may be
supporting someone who has cancer. You know, theearly stage when I was diagnosed, I think there's
something almost quite selfish, it's yourcancer. But I didn't realise at the time the impact
(54:09):
that it had on my siblings and on my friends whodidn't know what was happening. They felt they
couldn't help. And I was very self sufficient andkind of kept it to myself. And actually what it made
me do was, was it made me more open and not be afraidto ask for help, not be too proud. Now I always was
(54:38):
very proud of my, the fact that I was selfsufficient and very self reliant. But actually
this was a time when I could ask for help and peoplewanted me to ask because they were desperate to
give me the help. So it did make me more respectful,more grateful and unable to show that gratitude.
(55:06):
You know, the best way to get through it is to getthrough it with friends and family. And if you've
got that network, it really does help. You know,don't do it on your own. Yeah, I think that's the
best advice, Sonja. And it's so wonderful to seeyou here thriving, 20 years on. So Sonja, thank you
(55:26):
so much. Yes, touch wood. Thank you so much forjoining us on the Breast Cancer Now podcast. My
pleasure. Thank you so much. If you enjoyed thisepisode of the Breast Cancer Now podcast, make
sure to subscribe on Apple Podcasts, Spotify, orwherever you get podcasts. Please also leave us a
rating or review on Apple Podcasts and perhapsrecommend it to someone you think would find it
(55:48):
helpful. The more people we can reach, the more wecan get Breast Cancer Now's vital resources to
those who need them. You can find support andinformation on our website,
breastcancernow.org, and you can follow BreastCancer Now on social media at Breast Cancer Now.
All the links mentioned in this episode are listedin the show notes in your podcast app. Thank you for
(56:10):
listening to the Breast Cancer Now podcast.
This podcast contains the personal stories,opinions and experiences of its speakers, rather
(00:05):
than those of Breast Cancer Now. Welcome to theBreast Cancer Now podcast, providing support and
information to anyone affected by breast cancer.I'm Laura Price and I'm the host of the Breast
Cancer Now podcast. I'm a food writer and authorand I live with secondary breast cancer. Today we
are speaking to Sonia Gale, a trustee for BreastCancer Now with personal experience of a breast
(00:30):
cancer diagnosis in the workplace. Sonia workedin financial services for more than 30 years at
HSBC, Barclays and Ernst & Young. She's acommissioner for the Sheffield Race Equality
Commission and she's also involved with Women onBoards UK as a mentor and presenter supporting
diverse talent on boards. And she's here to tell usabout when she was diagnosed with breast cancer
(00:51):
and how companies can better support an employeewith cancer. Sonia, thank you for joining us.
Thank you for having me. It's great to have youhere. Could you start by telling us when and how you
were diagnosed with breast cancer, please? Oh mygoodness. So we're probably going back to 2004,
which was when I was officially diagnosed, butobviously hindsight is a wonderful thing. And I
(01:19):
now, well, I recognised during my treatment thatI'd had the cancer for probably several years, but
didn't realise. I was in Sweden actually with afriend who was filming and I tanked along. We were
in Stockholm and we hadn't gone very far from thehotel when I suddenly realised my legs were no
(01:44):
longer working. I was wonderful, I say can I takeanother step without falling over? I've never had
a sensation like it. And I remember standing therefeeling a bit of my friend looking at me saying,
what are you doing? And I said, I felt ratherembarrassed. I said, I can't feel my legs. She
(02:11):
said, don't be silly. I said, no, seriously, Icannot feel my legs. And the concierge came,
helped me back to the hotel and they took me to thehospital, took some bloods and didn't say
anything. They just, as they said, it may have beencramp, a trap nerve. And the doctor said, when you
(02:33):
get back to the UK, you need to see your GP. And oddlyenough, I had been trying to see the GP, but my job
was so demanding. It was finding time. I wasworking 60, 70 hours a week. Financial services is
very demanding. I was a senior director. And youput it down to overwork, I need to slow down. But
(02:57):
every now and again, I would get bouts of extremetiredness. You just punch through it. And in fact,
I had managed to see the doctor about a year before.We just prescribed iron tablets, which I took
diligently. But on that day, there have no use tome. And when I did return, I managed to see my GP, who
(03:19):
was a wonderful lady, Dr. Jean Parke, who's nowretired. And I can honestly say she saved my life.
She listened. I didn't know I had breast cancer. Iwasn't sure what was wrong. I just felt odd. I
didn't have my usual energy levels. And I felttired at the most odd times. And she noticed me
(03:45):
scratching my breast and said, Oh, what's that?And because I sometimes used to get eczema, I just
said, Oh, it's just a little rash. And I'd neverknown anybody in the family who'd had breast
cancer. So I had no prior experience or knowledge.And she said, Oh, let me have a look. And she said,
(04:06):
I'd like you to see someone. So I saw her on theWednesday. I then had a letter, which was hand
delivers, which arrived on the Saturday from anappointment at Lewisham Hospital in London on the
Monday. When I arrived, I didn't realize Ithought, why am I in the breast clinic? I normally
(04:27):
go and see a dermatologist. So even then, I had noidea it was cancer was the last thing on my mind. And
I popped in and saw him. And I was chatting away andshowing him my breast. And there was an African
nurse who was there in the room. And she wassmiling, not saying anything. And I, you know,
(04:50):
obviously, now I realized she's thinking, Oh,wait for it. The penny will drop. She's clearly an
intelligent woman. Just give it time. And he wastalking when he said, Hmm, I don't like the look of
this, I'm going to do a needle biopsy. And thenwe'll get you booked in. And I said, what for a skin
(05:10):
rush? And he stared at me and he said,miscalculated. He said, I really do believe that
this is breast cancer. And I said to him, don't besilly. I said, no one in my family gets breast
cancer. I said, then black women don't get breast.I actually said that. Anyway, Wednesday, within
(05:34):
48 hours, I was at Guy's and St Thomas' Hospital,running around getting various scans. And it was
stage, it was quite advanced. It was in my lymphnodes. They could see hotspots on the back of my
lung, and at various other places. And they said,there's no time to waste. We need to operate. So you
(06:03):
can imagine this is less than a week. And it was all awhirlwind. I remember speaking to my partner
thinking, I wonder if they've made a mistake. Isaid, how can I have cancer? Now I'm walking
around. I haven't lost any weight. And I felt okayother than this tiredness. And they did operate
(06:27):
and it was cancer. And then of course, it's not justremoving your lump, but that's when your
treatment really starts. So what treatment didyou have? So they did a local wider excision. So
they were able to preserve all my bits. They werejust a little bit smaller, which aesthetically
(06:51):
was quite nice. So there's all, you know, so therewas a bonus. And then I had to take Tamoxifen. And of
course, because my background was policy, I did alot of research. I sat down with the oncologists.
We talked through the different treatmentoptions. And they offered me, they knew what they
(07:13):
said was an innovative form of chemotherapy, but Idecided to go with a tried and tested chemo. Even
today, the smell of my hair makes me feel slightlyodd. So I tried to avoid going back to guys anywhere
near where they're doing the treatment becausethe smell is very triggering. But he did save my
(07:37):
life. I lost all my hair. But my hairdresser, we hada shaving session. So, you know, it was all about
getting prepared. And my partner, he shaved hishead as well, not that you had much to begin with,
but we had a head shaving session with a little sipof champagne and just tried to stay positive. And
(08:03):
oddly enough, I think, although it was a shock, Irealized when I was in the hospital that actually I
was one of the lucky ones, one that they'd found it,that my GP had taken the time to listen and just look
at my body holistically. No one goes into thedoctor and says, Doctor, I think I have cancer. I
(08:30):
mean, maybe they do today, but back then I didn'tknow what was wrong. And she was skilled at
listening, looking at all the hidden cues. You sayone thing, but your body says something else. And
because she acted so promptly, she picked up thephone she didn't draft a letter, she knew the
(08:52):
doctor, Lewis said, I really need you to see mylady. And remember, this was on the NHS. So, you
know, I will always be a fan and an advocate for theNHS because on that occasion, although I'd never
had cause to use it, when I needed it the most, itcame to my rescue. I think also I benefited from my
(09:15):
postcode because where I lived, we came within theguise and said Thomas's hospital catchment area.
And that's one of the best oncology centres inEurope. So I had fantastic care. But I think also
because I was able to read technical data, Iunderstood my treatment, and I could make an
(09:38):
informed decision. So I wasn't, I wasn't passive.Yeah, I did ask them and and I think once they
realise that you've done your homework, there is adifferent relationship between yourself and
your oncologist, you can actually, I'm not anequal and I'm not a specialist. But I think he was
impressed that I took the time to read about thedifferent forms of treatment. So I was happy to
(10:03):
take my pink bullet to Moxifen, which I tookdiligently for just over five years. And I also had
to have Zolodex injections, which was mysuggestion because my I had estrogen receptor
positive. So I said, well, that's good, but it'snot the other one, because if it's my hormones
(10:25):
raging out of control, then that's what'streating the cancer. So let's shut them down. So I
had to have tummy injections, which were quiteuncomfortable with the Zolodex, but it did shut
down my ovaries. And then of course, there's theother stuff like hot flushers. And actually the
(10:45):
wonderful thing that I find in 2023 now is peopleare taking the menopause very seriously. 2024
even. Yeah, and 24. Yes. And with us back then, itwas something you just had to put up with. But of
course, when you're having chemical treatmentsand breast cancer, they don't tell you about the
(11:09):
fact that it shows you into an early menopause. Andthe hot flushers were just ferocious. Yeah, well,
there's so many things I want to pick up on from whatyou've just said, and so many of it, so much of it
that I relate to, including the Zolodexinjections and the Tamaxophen and the wide local
excision and so much more. But you mentioned thatyou were one of the lucky ones, and we are now 20
(11:34):
years on from that diagnosis. So I just want to askhow you're doing now health wise. I'm healthy. I
feel I, you know, I walk, I mean, I moved as born inYorkshire and I returned. You know, one things
with COVID, and we lost some wonderful people andloved ones. But it did reconnect me to my place of
(11:57):
birth. And where I live in Sheffield is one of thegreenest cities. And you're right on the doorstep
of the Peak District. So I do a lot of walking. And Ican still travel to London and do things remotely.
So, you know, so that was one of the things I think weCOVID, it did make people think about work, life,
(12:19):
violence. Oh, that's wonderful. I'm fromHuddersfield, and I grew up 15 minutes from the
Peak District as well. So more, more, moreparallels. Yeah, I'm glad you're in the
countryside now. But no sign of breast cancer. Andyou know, as far as you, you're aware you've put
that behind you. Yes, I mean, it took a few years. Iwould say, I mean, it's 20 years now. If you told me
(12:45):
then, you and I would be here today, I would neverhave believed it. Yeah, in my head, I kind of
reconciled that I might have 10 years, ifunfortunate. But actually, I was one of that small
percentage, 15%, who really responded well to thetreatment. I think also maybe changing my
(13:10):
lifestyle as well. So, drinking less, eatinghealthily, doing a little bit more exercise,
trying to stay positive. And so I get my, my regularcheckups. And they are very robust. And touch
wood, it's always been very good. No signs of anyreturn. And you spend probably the first couple of
(13:38):
years waiting every, you know, you're listeningto your body at night. And every little rumble and
gurgle and twitch and pain you think, has it comeback? But then there comes a point at which you
think I can't keep waiting, you just have to get onand live your life. And I think it's that
(13:59):
acceptance that actually the end, if you want tocall it the end, is something that happens to all of
us. And the only thing you can try and influence isthe manner of how you go and you make sure that
you've done all the things that you want to do andhave no regrets. Or you're living in fear. And
(14:21):
somebody made the thing that actually cancer cangive you time to put your affairs in order. It's one
of the, I wouldn't say that there's an upside tothat, but actually my father died from a heart
attack. And it was very sudden. One day was with us.And then the next day, he'd gone. And I remember
(14:47):
the, you know, the devastation and how it affectedmy mother, because they'd been together for such a
long time. And she'd noticed something wasn'tright, being no men and men and, oh, it's nothing.
And at least with my cancer, I was able to talk tofriends. I was able to reconcile with with with
(15:11):
other friends and family members who I hadn't seenfor many years. And you kind of put your affairs in
order. And it did enable me to change my mindset.And maybe I'm a better person for it, but it
shouldn't have taken cancer. To reach thatepiphany. But but I didn't reach it. And I'm
(15:31):
delighted to still be here. Well, I'm delightedyou're still here as well. And it's so good,
especially on this podcast to hear these positivestories, you know, someone who has survived and
thrived for 20 years. It's just it's justfantastic to hear. There was something that you
said just before, which was 20 years ago, youthought black women don't get breast cancer. I
(15:53):
wanted to ask, why do you think that you didn'tthink that you could get breast cancer? I think it
was because when you saw all of the images, whenthey talked about breast cancer, it was always
somebody who looked like she was from the homecounties or the Women's Institute. So not even
(16:16):
from color, but almost seemed like a very middleclass type of disease. And that's because all the
other women who were getting it were just notvisible. So of course, I never saw anybody who
looked like me who had cancer. And of course,within the community, even those who did have it
(16:39):
kept it very quiet, even from close family. And itwas only after I had been diagnosed and gone
through my treatment. And then I started talkingto other family members that I then realized that
in fact, there had been incidents of breast cancerin our extended family, but it was just never
(17:01):
discussed. I'm really interested to ask how muchyou think that has changed in the last 20 years. Do
you see more visibility now for people of color interms of cancer diagnosis and treatment? Oh,
absolutely. It's changed and improved so muchmore. And I think obviously, the work of breast
(17:24):
cancer now, but certainly, I think we've movedbeyond that image that breast cancer is the
something that somehow blights the white middleclasses. And actually, it's a scourge can be
impacted. And if you look at the fact that so manypeople are being diagnosed, you would always say
(17:53):
that it's an epidemic. And actually, what'schanged is that more people like me are living and
moving beyond breast cancer, whereaspreviously, you get it and then you would die. And
that would probably because of late diagnosis.But what's changed is that people are being
diagnosed a lot earlier. And also, I think becausepeople are seeing it on the internet, you have
(18:21):
various advocates, there are a lot of youngerwomen who are getting breast cancer and being very
vocal about their experience and reallyencouraging people to check their breasts to be an
advocate for their own well-being, to be pushingin demand to see their doctor and to request a
(18:45):
referral, which is their right. And just makingsure that people are empowered and removing that
stigma. Breast cancer isn't something, it's notcalmer, it's not payback for something you did in a
previous life. It's not something that you'veeaten. It's not a sign of demonic possession or
(19:10):
that you're somehow not worthy in the eyes of theAlmighty. It could be down to just genes. It could
be because of your lifestyle. It could be, as Isaid, genes or family history. There are so many
(19:31):
things, but what I try and do is to say to people,it's not something to be ashamed of. Anybody can
get breast cancer, even men. And it's no respect ofage or colour or your sexuality. And the thing is,
(19:51):
once you think you have it, get it diagnosed, whatyou need is a piece of mind. Is it cancer? Is it not
cancer? And if it is cancer, what kind of cancer doyou have? And what are the best treatments for that
kind of cancer? And if you don't know, then come toBreast Cancer now, or there are so many wonderful
(20:15):
cancer charities out there who can help give youthe facts and insights and support to help you get
through it and move beyond it. And in the firstinstance, if you're in the UK, go to your GP
because, as we both know, you can have incredibleexperiences on the NHS and with your GP. It's just a
(20:37):
case of reporting whatever symptoms you've got.And thank you also for saying that it's nobody's
fault that we get cancer because I think that a lotof listeners, including me, have experienced
that thing of, was it something that I did? Is thiskarma? Or is it something that I've eaten? Or is it
the fact that I've drunk alcohol or I've smoked orI've partied, you know, in my 20s or something? So,
(21:02):
yeah, that's a really great message to have sharedwith us. Now, I know you have some stories about
your experience with cancer in the workplace.Could you start by telling us where you were
working at the time and how your employer reactedand how, in fact, you broke the news if you did break
the news to them? Well, I was in a very interestingposition. I can laugh about it now, but I was
(21:29):
working for a large bank just before my diagnosis.I had resigned from the bank to stay on with a
regulator as a contractor. When I told theregulator, I think there was shock, but I was
(21:50):
fortunate that the person that I reported to, shewas very supportive. And the work that I'd done for
them, she understood the financial impact on me.But I did feel not obligated, but, you know, I felt
that I owned them a duty of care to return and get ondoing the work. And they did make all of the
(22:20):
reasonable accommodations to make me feelcomfortable. I could, we didn't really do so much
remote working back then, but I was allowed to doall my research from home and only come into the
office two days a week. So even during my chemo, Iwas still working. And it did slow me down
(22:43):
mentally. You know, my brain, which I almost tookfor granted, which would fire suddenly, it was
taking just, I noticed it. But I think deep down, Ithought to do the job that I'm doing, the skill sets
that I was being paid for, I thought, can I continueto work at that level? And so even though I got
(23:08):
through it, I realized that I was not going to be thesame and I would need to reevaluate my lifestyle.
And also the type of work that I was doing and moveaway from that high pressure, high performance,
full on, where you're working all hours, andyou're out and about, I was fortunate that I was
(23:34):
working in a very supportive environment. Butthen I talked to other people who had terrible
problems, they were being made redundant, eventhough their employer knew that they might be
unwell. And I wouldn't say it's somethingpeculiar to financial services, but I would say in
(23:56):
the private sector, there's almost thisunwritten rule, yes, you get paid a lot of money,
but you only get it as long as you're fit andhealthy. And the minute there's sign of weakness,
then both parties know that's the end of it. Andthere's usually a party in other ways. And then
(24:17):
what you try and do is negotiate a nice settlement,which I was able to do. So financially, yes, I had to
make some sacrifices and change my lifestyle. Butthe impact on me was much less than it would have
been for other people, some of whom were literallyon the poverty line, and having to sign on, I never
(24:43):
got to that stage. But it did feel uncomfortable attimes. And had I not been working, it would have
been tricky. Did you experience at work anyinsensitive or discriminatory comments when you
were going through your treatment, or in terms ofyour diagnosis? There would be, I think the people
(25:06):
who didn't realise that I had it. So it was keptreasonably confidential. I was able to get a wig.
So most people didn't realise that I was even sick.I never lost any weight. Even when I was going
through the chemo, they talk about the chemo glow.So people kept saying to me, have you been on
(25:27):
holiday? And you're having to make excuses. Sopeople would make comments. I guess there's the
stereotype that people think what cancer is, thatyou're like a walking skeleton and that you can
tell. But actually, people respond differently.And you can see people who look very healthy. And
(25:53):
then a few weeks later, they're gone and you thinkthey had cancer. You said, really? Where did that
come from? So people would make commentsincentively not realising that I had cancer and I
was going through treatment. And I wouldn't sayanything to not, you know, because it wasn't said
in malice. And I thought maybe I would have said ormade those assumptions before I was stricken
(26:20):
myself. So I would almost say I was a silentobserver watching people making some of the
comments that probably I made when I was ignorantand didn't know any better. And then you, and I
remember thinking, you know, once I finish, I needto retire early so I can actually give something
(26:44):
back. Because in my darkest days when I reallythought the prognosis looks really bleak, I spoke
to a wonderful woman who just provided thesounding board and just explained to me, listen,
there are women who've had similar diagnosis toyou and they've got cheroid. And she was very
(27:11):
matter of fact, a lovely Geordie lady. And she justgave me the kick up the bum that I needed to stop
wallowing self pity. And as bad as you think you'vegot it, there are others who are suffering far
worse. She said, you've got money in the bank. Shesaid, you don't have to worry about paying your
(27:33):
mortgage. You have your family around you. Andyour employer is supporting you. And you seem to
have really good treatment on the NHS. And Ithought, actually, for, you know, and yes, I am a
black woman. But I think because I was in London, Ihad the right support network. I was able to take
(27:59):
advantage and benefit from the best of the NHS. Itseems you were fortunate on many counts. Is that
that early retirement that you took, is that whatled you to become a trustee for Breast Cancer Now?
Yes, yes, it was, I'd made the decision that if I gotto 55 then I would quit and take advantage of my the
(28:26):
retirement benefits and I applied to BreastCancer Care thinking that I'd be a volunteer. And
actually talk to women who look like me, and otherwomen, particularly those who may be in associate
demographics where they don't have access to allthe amenities, and to give that voice of hope and
(28:51):
inspiration and share my experiences. And when Ispoke to Breast Cancer Care, because my
background in policy, risk and governance, theysaid, well, actually, could you join us as a
trustee? And I remember thinking, oh, am I jumpingout of the frying pan into the fire having just
resigned from financial services? But I've lovedit. And I continue to enjoy it. And being part of the
(29:20):
board, being engaged in the strategy and thedirection. And one of the things we talked about at
Breast Cancer Care, and I said, it's wonderfulthat we focus on helping women and men to think of
life after cancer, and about living, but livingwell. I said, but wouldn't it be great if we could
(29:45):
also tackle the research and find a cure, or someform of early diagnosis that can give people that
reassurance and make sure people are getting theright treatment that's tailored for them, rather
than the sort of cheek dip approach that I wentthrough. And so, you know, within two years, we
(30:09):
were having, you know, the merger discussionswith now, and we are now Breast Cancer now. And
we're having a real positive impact and influenceon how Breast Cancer is being tackled here in the
UK. I know you do some work separately fordiversity on boards around the UK. Do you also do
(30:36):
diversity work within Breast Cancer now, or do youhelp support the strategy in terms of, you know,
making Breast Cancer more visible for people ofcolour? Yes. So, of course, after the George Floyd
incident where I think there was this light bulbmoment for most of the world, for somebody like me,
(30:59):
I'd always been aware that actually what theGeorge Floyd incident meant was actually it
brought our white allies felt that they couldstand up and make their voices heard as well. And
it's been wonderful to see that shift inunderstanding and the recognition of
(31:22):
inequalities. And when we talk aboutinequalities, it's interesting when I think
about my own experience with cancer, and also whatwe saw more recently with COVID and people, sort of
when COVID hit looking and thinking, why so manyblack and brown NHS people getting hit by COVID?
(31:47):
But of course, you know, COVID isn't racist, andneither is Breast Cancer. These are things of
opportunity, and the more opportunities they getto access you, the greater your chances of
actually either getting COVID or indeed beingimpacted by cancer. And so of course, things like
(32:12):
lifestyle, accessing a GP, assuming that there isa GP practice within your immediate locality. The
type of work that you do if you're gig economy orshift worker, again, that will all limit your
ability to get that GP appointment. Theexperience I had with my GP, I don't think those
(32:37):
with the way the NHS has gone now and the increasingdemand on its services. It does worry me that
people may have breast cancer, but it's not beingdiagnosed because they cannot get into to see
their GP because you have to be referred. I think aswell, one of the things that I was never aware of as a
(33:02):
white skinned patient is that people of colouralso experience difficulties in terms of access
to wigs that are suitable for them, lymphoedemasleeves, all sorts of things that, you know, I just
would never have realised was lacking for peopleof colour. Is that something that you experienced
as well? Yeah, absolutely. And in fact, I rememberlaughing when I had my chemo and they showed me the
(33:29):
wigs they had available and the women looked at meand we looked at the wigs. There were sort of
different shades of blonde, ash blonde. I thinkthere's a red one and one that was sort of jet black,
which would have been fine had I been sort of Asian,but not really suitable for me. But again, I'd
(33:55):
already realised that. And so my hairdresseractually did a tailored custom wig for me, which
matched my hairstyle. And she cut my hair had apixie cut. And so we did the wig in the same cut. And
then we shaved all my hair off. So most peopledidn't even realise that I had lost my hair,
(34:18):
because I had a tailored wig. And then with thelymphoedema, I was able to get private lymphatic
drainage, which I had paid for privately throughmy private medical insurance. So I never had the
dreaded lymphoedema. And I didn't have to wear thesleeves. But again, not everybody has access to
(34:44):
that. And yeah, and you see that in so many walks oflife, where you can't get things that are tailored
to match the colour of your skin, and nobody wantsto walk around advertising the fact that, oh, look
at me, I have cancer. But then again, you see some ofthe younger girls, and they're getting wonderful
(35:06):
tattoos done on their head. And they're happy to beproud and show their shaved heads. And that's
wonderful. If there's anyone, any people ofcolour listening to this podcast today who are
struggling with access to wigs or to lymphoedemasleeves, which we should explain lymphoedema is a
(35:29):
very painful arm condition that some peopleexperience after breast cancer surgery. Is there
any direction you could point those women in tohelp find the services that they need? Yeah, come
to breast cancer now. We have a wealth ofinformation. And we also have our app, Becca, as
(35:50):
well, which provides some useful hints and tints.And in fact, there's probably more information
available now than there would have been back in2004 or 2005. The internet is a washed YouTube.
I've seen some wonderful adverts where people aremaking their own lymphoedema sleeves and just
(36:12):
ordering material from a very large onlineretailer, who I won't name. But there's so many, in
fact, there's so much that you can get. And there'ssome wonderful groups which you can join, which
are focused very much on different groups,whether that's LGBTQ plus, or whether that's by
(36:38):
your ethnicity or by your religion, because it'snot just black women, but also South Asian women,
whether you're Hindu, Muslim, or Buddhist. Thereare all kinds of different support networks out
there. And you can find some that are UK wide orspecific to your town or city. But certainly
(37:04):
there's a lot of information on the breast cancernow website, where we can signpost people to where
they can get support. And that support is free. Youdon't need to pay for it. And also, as part of your
diagnosis and treatment, if you are going throughtreatment, the breast cancer care nurses have a
(37:27):
wealth of information and are very supportive.But of course, you need to get referred in the first
place. So for me, the real challenge is aroundearly diagnosis, because if you don't know that
you're sick, every day that ticks by, thatmalignant growth is sitting inside you. It's like
(37:52):
a ticking time bomb. The quicker they can get to it,the better the outcome. And even if they don't get
to it soon, well, hopefully I'm an example thatthere is still hope. And even if it gets into your
lymph nodes, if it's treated, and if you respondwell, and the treatments that we have now, every
(38:15):
year, there's something new coming out. And ofcourse, with the growth of AI, where we're seeing
breast cancer treatment, which is tailored toyour physiology, which is which is fantastic.
Then again, that's just increasing your chancesof a successful outcome. Yeah, well, we'll put a
(38:36):
bunch of those links that you mentioned in the shownotes of this episode for anyone who wants to look
for resources and advice. I'd just like to ask youabout AI, artificial intelligence, because I
don't know much about what's being done with AI andbreast cancer treatments. And I don't know if it's
relevant in diagnosis as well. Is that somethingyou can tell us more about? Well, I think the one
(39:02):
area where AI is being tested is obviouslyradiography and doing the scans, because
obviously when you have your scan, then you'rereliant on a skilled radiographer to review that
scan, and being able to look at the scans and say, isthat cancer? And and now you've got AI systems that
(39:28):
can just race through ultra fast and getting to apercentage, which is approaching that of a
skilled radiographer. So the challenge you havein all cancer diagnosis, not just breast cancer,
is that early diagnosis. And of course, it takesmany years to train a radiographer. And a lot of the
(39:56):
great radiographers that we had have eitherretired or reaching retirement, and we just can't
replace all of them. So AI, this is an area where AIcan be a real benefit, because it can go through
more scans more quickly. And the quicker it can dothat, and with great accuracy, the better you as a
(40:22):
patient can then get that reassurance. So ratherthan waiting, maybe a week or two weeks or maybe
longer, you might get confirmation within 48hours. Brilliant. It sounds fantastic. And it
sounds like something that could ease the strainon the NHS as well. Although of course, we still do
need all of those oncologists and nurses andradiographers to deliver the results and to talk
(40:47):
to the patients. And I very much hope AI neverreplaces our doctors and nurses entirely, but
it's great that it's becoming a support in someways to the services that we need. Just moving back
to breast cancer and diagnosis in the workplace.You were fortunate that you had a good experience
in the workplace when you were diagnosed withbreast cancer. Obviously, lots of people don't
(41:11):
have such a great experience. Is there anythingyou would say to, first of all, to employees who
have a cancer diagnosis and want to approach theirworkplace about what things that they might need?
I think I would say it's about be, you know, prepareyourself and be ready to be your own advocate.
(41:39):
Although my experience with my employer wasn't asbad, that was more through my own efforts rather
than my employer. And I would say to any employee,try not to, and it's not always easy, but you never
(42:00):
want to be wholly reliant on your employer. It'syour health, it's your life. You are the best
person to manage that. And so it's about makingsure you have the right resources around you. And
some of those will be the employer. So look at thebenefits package. What support do you get? Is
(42:28):
there a well-being health check? A lot oforganisations offer it. It might be free. So make
use of it. And also, you know, find out from otheremployees, you know, whether it's a new job that
you're going for. A lot of people just look at thesalary, but I always say, look at the overall
(42:53):
benefits package. You know, it's not just aboutwhat they're paying you, but actually if you get
sick, how many weeks sick leave do you get full payon? And you'll be amazed. Some employees are very
generous, others less so. So it's about beinginformed. And looking beyond just the numbers.
(43:18):
And also looking at, you know, if people do getcancer, have a look at the board members, have a
look at their website, read their annual report.You know, what do they say about supporting cancer
charities? Or, you know, do they have employeewell-being? What provisions do they make if you
(43:42):
get sick? You know, can you work from home? Can youget additional support? And when will that
support be provided? And again, I think goodemployers are becoming, you know, very focused on
well-being. And some employers do it very, verywell. They may not always advertise it. And some of
(44:08):
this stuff is there. And I talk to staff and say,well, you do realise your firm offers this, they
say, do they? And they haven't looked and you go, soit's there on the employee benefits website. You
have to, you know, take advantage of it. Youmentioned at the beginning, when you were talking
(44:29):
about your diagnosis, you were working 60 to 70hour weeks in financial services, very high
stress, very long hours type of industry. I had afairly similar experience where in my 20s,
throughout my 20s, I was also working in a sort offinancial services role, similar working
(44:50):
incredibly long hours, incredibly high stress.And my cancer diagnosis came at the end of that six
year period of stress where I just moved to a newjob. But I remember in the years leading up to my
cancer diagnosis, which was when I was 29, I had hadother kind of stress related illnesses like
(45:11):
shingles and acne and just, you know, things thatwere much more minor. But where I would go to the GP
and they would say, are you in a high, you know, thejob that you have, is it very, very demanding and
intense? And can you take some time off? And theywould always say things like, can you improve your
work-life balance? And can you take some time off?And of course, when you're in one of those jobs, or,
(45:35):
you know, you're in a similarly demandingsituation where perhaps you've got young
children, and you're also working two jobs andyou're working shifts or yourself employed, it's
always incredibly difficult to take that time offthat the GP recommends, because you can't
financially, you can't lifestyle wise, you justcan't. So is there anything that you would
(45:57):
recommend to someone who is perhaps in a similarposition and hasn't got a breast cancer
diagnosis, but is feeling like if they carry on atthe pace that they're at, then they will be, you
know, diagnosed with some kind of serious illnessat some point down the line? You know, that's a
(46:18):
great question. And one of the things I say when I'mtalking to potential board candidates, I always
say to them, no one ever got to retirement wishing,or if only I'd worked harder. And it usually gets a
laugh. But the point I'm making is, the things thatare really important is your health, friends, and
(46:47):
family, and well-being. And so when we talk aboutmaking adjustments to our lifestyle, and I use my
own example, I was working so many hours, I was on agood salary, but I didn't even have time to go
shopping. So I had a very healthy bank balance. Butactually, could I have managed on half of that
(47:11):
money? Probably. And I understand it's a bit likebeing on that treadmill. And it's very difficult
to step off. So actually working full pelt can maska lot of underlying issues. And I would always say
(47:31):
to people, you cannot function well if you don'thave your health, if you're not at your maximum
stage of well-being. And so it's about givingyourself a chance. And it's about looking at your
lifestyle and saying, okay, do I need to workharder? Or actually, do I need to work smarter? And
(47:59):
if your employer can't support you in that, thenfind another employer. If you're skilled, if you
have a special talent, one employer may not treatyou or may not give you the flexibility, whether a
competitor might. And you may have to take maybe a5% cut, or you may even get a pay rise. And it's a win
(48:28):
and win. And although it's said that it took COVIDto lift the scales, we do at least now have a
recognition around hybrid working. And I thinkthat gives people more opportunities to pace
themselves. You don't need to be running full pelt24 hours a day. The majority of companies and
(48:55):
leaders that I speak to, a common thread across allof that is they refer to their staff, their people,
their employees, whatever term they use, as theirmost valued asset. And I saw, well, that's
interesting. Because if you value that asset somuch, why would you treat it in this manner? If you
(49:20):
have something that you love and which isprecious, then you protect it. And that means not
just saying the words, but actually providingthat infrastructure. So things like well-being,
how do you respect that? Treat your staff well,because by and large, you will see that payback in
(49:47):
terms of productivity. But when you look at anorganization where there's incidences of sick
leave, all they're being taken to tribunals, allthere's lots of complaints. These are all the
warning signs that notwithstanding, we value ourstaff that you have a problem and you can't ignore
(50:13):
it. And the solutions are quite simple and don'tnecessarily require money. And it's about having
people like you in those companies who areactually standing up and saying these things,
because everything that you've just said reallyresonates with me. I've heard time and time again
companies talking about well-being, just as abuzzword, but they don't necessarily mean it and
(50:36):
they don't show that they value those employees asmuch as they say that they're going to value them.
So yeah, I mean, actually respecting people'sholidays, actually respecting people's
weekends, respecting people's downtime,people's lunch hour, not many people even take a
proper lunch hour, because we're just so on. So Iwould say I recommend sitting down, turning your
(51:01):
phone off, reading a book, reading somepamphlets. Breast Cancer Now has so many
wonderful resources that are on paper that youdon't have to read online, even though there's
everything you could possibly want online aswell. And you have to be on your some kind of device
to be listening to this podcast. So I know how hardit is myself to switch off. But you've raised some
(51:24):
absolutely wonderful points. So thank you forthat. I would like to ask you the question that we
ask all our guests on the Breast Cancer Nowpodcast, which is if you could see one change in
diagnosis and treatment of breast cancer in thecoming years, what would it be? Oh, we've seen so
many advances. And you obviously want that tocontinue. I think AI, it can be a wonderful tool.
(51:57):
It's not a replacement for a doctor. But it can be agreat tool for early diagnosis. I think the Holy
Grail is a simple blood test that can detect cancerin a meaningful way. And then aligning that to a
(52:20):
tailored treatment, which is suitable for you andyou alone. And that treatment is designed to
maximise the best outcomes for you. And I think ifwe can get to that, then I would say we've probably
(52:40):
achieved as a as a charity, what we set out toachieve. Which is for everyone to be diagnosed
early. And when they are diagnosed to live and livewell. Yeah, that would be absolutely fantastic.
And it's something that we're seeing acrossdifferent areas as well. I know that there are also
(53:01):
ways that you can tailor your diet now according toyour own particular physiology and everything
else. So really exciting and interesting thingscoming out with AI and with personalised kind of
health services. Tonja, is there anything elsethat you would like to share with us today with
(53:22):
regards to your own breast cancer experience,your work with diversity, your work on boards and
your work with cancer in the workplace? Try not todespair. There is always hope. There are some
wonderful people out there who can help you, whocan listen. And this is just not, this is not you.
(53:47):
This is something that affects all of us. And youmay not have cancer yourself. You may be
supporting someone who has cancer. You know, theearly stage when I was diagnosed, I think there's
something almost quite selfish, it's yourcancer. But I didn't realise at the time the impact
(54:09):
that it had on my siblings and on my friends whodidn't know what was happening. They felt they
couldn't help. And I was very self sufficient andkind of kept it to myself. And actually what it made
me do was, was it made me more open and not be afraidto ask for help, not be too proud. Now I always was
(54:38):
very proud of my, the fact that I was selfsufficient and very self reliant. But actually
this was a time when I could ask for help and peoplewanted me to ask because they were desperate to
give me the help. So it did make me more respectful,more grateful and unable to show that gratitude.
(55:06):
You know, the best way to get through it is to getthrough it with friends and family. And if you've
got that network, it really does help. You know,don't do it on your own. Yeah, I think that's the
best advice, Sonja. And it's so wonderful to seeyou here thriving, 20 years on. So Sonja, thank you
(55:26):
so much. Yes, touch wood. Thank you so much forjoining us on the Breast Cancer Now podcast. My
pleasure. Thank you so much. If you enjoyed thisepisode of the Breast Cancer Now podcast, make
sure to subscribe on Apple Podcasts, Spotify, orwherever you get podcasts. Please also leave us a
rating or review on Apple Podcasts and perhapsrecommend it to someone you think would find it
(55:48):
helpful. The more people we can reach, the more wecan get Breast Cancer Now's vital resources to
those who need them. You can find support andinformation on our website,
breastcancernow.org, and you can follow BreastCancer Now on social media at Breast Cancer Now.
All the links mentioned in this episode are listedin the show notes in your podcast app. Thank you for
(56:10):
listening to the Breast Cancer Now podcast.
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