June 7, 2024 • 47 mins
In this episode, Laura talks to Fiona, a Breast Cancer Voice and active campaigner for disability issues.
Fiona speaks about being diagnosed with breast cancer over 30 years ago, and the challenges she faced during her diagnosis and treatment. She tells Laura about her disability and wheelchair use, and how it created obstacles in treatment for breast cancer. Fiona also talks about her volunteering and fundraising for Breast Cancer Now, as well as founding the initiative Swimming After Surgery.
Find out more about Swimming After Surgery
Find out more about Flat Friends
Take a look at what support is on offer from Breast Cancer Now's support service Someone Like Me
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).
You can also watch this episode on YouTube.
Key Topics:
0:24 Laura introduces Fiona
1:11 Fiona's diagnosis of breast cancer
3:43 Fiona's reaction to her shock diagnosis
5:26 Surgeries for breasts cancer, and unforeseen challenges
8:28 Flat Friends, support charity
9:43 How to talk to someone with a breast cancer diagnosis
10:54 How Flat Friends has helped Fiona
13:14 Fiona's disability diagnosis and its crossovers with breast cancer
16:52 Disability and breast cancer
21:16 Fiona's wheelchair usage
22:52 Swimming After Surgery and other initiatives
26:48 The beneficial impact of swimming
27:37 The importance of dignity
29:49 Getting involved with Breast Cancer Now
32:29 The financial impact of breast cancer
34:19 Fiona's experience with the benefits system
39:51 Macmillan's cancer and domestic abuse initiative
44:38 Tips for managing breast cancer care with a disability
45:34 What needs to change in breast cancer?
Fiona speaks about being diagnosed with breast cancer over 30 years ago, and the challenges she faced during her diagnosis and treatment. She tells Laura about her disability and wheelchair use, and how it created obstacles in treatment for breast cancer. Fiona also talks about her volunteering and fundraising for Breast Cancer Now, as well as founding the initiative Swimming After Surgery.
Find out more about Swimming After Surgery
Find out more about Flat Friends
Take a look at what support is on offer from Breast Cancer Now's support service Someone Like Me
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).
You can also watch this episode on YouTube.
Key Topics:
0:24 Laura introduces Fiona
1:11 Fiona's diagnosis of breast cancer
3:43 Fiona's reaction to her shock diagnosis
5:26 Surgeries for breasts cancer, and unforeseen challenges
8:28 Flat Friends, support charity
9:43 How to talk to someone with a breast cancer diagnosis
10:54 How Flat Friends has helped Fiona
13:14 Fiona's disability diagnosis and its crossovers with breast cancer
16:52 Disability and breast cancer
21:16 Fiona's wheelchair usage
22:52 Swimming After Surgery and other initiatives
26:48 The beneficial impact of swimming
27:37 The importance of dignity
29:49 Getting involved with Breast Cancer Now
32:29 The financial impact of breast cancer
34:19 Fiona's experience with the benefits system
39:51 Macmillan's cancer and domestic abuse initiative
44:38 Tips for managing breast cancer care with a disability
45:34 What needs to change in breast cancer?
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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. This
episode we're talking about breast cancer andovercoming obstacles with Fiona Stevenson.
(00:30):
Fiona is one of Breast Cancer Now's voices, adiverse group of people whose lives have been
affected by breast cancer and who now help shapethe charity's work by sharing their insights and
personal experiences. Fiona is a wheelchair userand an active campaigner for disability issues in
her local area of Telford and across the UK. She'salso the founder of Swimming After Surgery, a
(00:52):
local organisation that helps people get back ontrack with swimming. She first found a lump more
than 30 years ago and she's here to talk to us aboutthe additional obstacles she has faced through
breast cancer and how she now uses her voice to helpothers. Fiona, welcome to the Breast Cancer Now
podcast and thank you for joining us. Thank you,Laura. Could you start by telling us when and how
(01:14):
you were diagnosed with breast cancer? I found alump at the age of 22. I went to my GP. He said, wait
for two periods to pass and if it hadn't gone orgrown, go back. So I went back. They did a
lumpectomy in my local hospital and I had the lumpremoved. Didn't think anything more of it. Didn't
(01:38):
even think about the word cancer and then 18 monthslater, I had another lump in my left breast. Had
that removed at a different hospital. Had my thirdoperation at the age of 31 and that didn't go well
and then I had to have the wound quarterised closedeight months later and it was after that I noticed
(02:07):
the scar didn't look right and I went back to my GPand said, oh, because you're aged, it won't be
cancer, but you need to see the breast consultant.Saw the breast consultant, had an aedalbiopsy. He
said he wouldn't need to see me again. I got home toan answer phone message, which was the worst way of
being told. The consultant had left an answerphone message on the Thursday, which I received at
(02:29):
half past six at night when I got home from work. So Ihit the answer phone button and the message was not
good news. So I rang the hospital the next day.Couldn't get hold of him because he was in surgery
all day. So I arranged for the hospitalappointment the following Tuesday. I turned up
and the nursing staff were saying, oh, you need totake your top off. We need to do another biopsy. I
(02:51):
said, no, you don't. I just need to speak to theconsultant. At this point, a nurse came in wearing
a blue and white uniform but hiding her lanyard andI didn't know what that significance was. And then
two weeks after the operation, she appearedwearing her lanyard and the lanyard was green and
white, Macmillan. And that was my firstexperience of this is cancer. When I asked the
(03:22):
consultant what the outcome was, he said, well,we've got it all. It stopped the carcinoma in situ,
which is early stage breast cancer. But by the way,your previous three operations were also that the
carcinoma in situ. I went, well, why did no one tellme? He said because you didn't have chemotherapy.
No one thought they had to tell you. So I was 32 atthat stage. So 10 years have passed since you had
(03:45):
originally found that lump and you did not know itwas cancer all that time. No. How did that make you
feel when you then heard it was cancer? I wasshocked, but relieved because as he said, he got it
all. But it was, why did no one tell me? I was angryand disappointed. But through that, I wanted to
(04:11):
change things for those young people thatfollowed my footsteps. Because by doing things
early, you don't necessarily need diagnosis. Soyears later, I became a men and cancer voice. And
then I've been involved with breast cancer now aswell, campaigning and doing other things since
(04:35):
2006, things interlink. And it's vital thatmessages get across and you can't have one charity
not interlinking with another. So that's why I'minvolved with an awful lot of stuff because I think
the collaboration saves everybody repeatingthings over and over and over again. It saves
(04:57):
reinventing the wheel. Yeah, absolutely. And Ithink, you know, you're doing something really
important because you've had this experience offeeling like, I guess you had the wool pulled over
your eyes and it's very hard to advocate foryourself. It's very hard to know what treatment to
get or how to look after yourself if you don't knowwhat's wrong with you. And we are going to talk a bit
(05:20):
about your experience with breast cancer now andwith McMillan in a little bit. But can you tell me
what treatment and surgeries did you have afteryou found out that it was breast cancer? I had some
six lumpectomies on the left side spanning fromthe age of 22 to 2015. My left mastectomy was done in
(05:43):
2007. And then I had a right mastectomy in 2015. Soaltogether I've had eight breast cancer
operations. Wow. And did you end up havingchemotherapy as well? No, no chemo, no
radiotherapy, just the eventually themastectomy is because I had to fight to get the
(06:04):
mastectomy on the left breast because it was myseventh operation. And when it came to my sixth
one, I said to the consultant, can I have amastectomy because I'm fed up with going through
this and you're breast conserving all the time.And he said, well, your first marriage has failed,
you're in between man, you've got better chance offinding a man with two breasts than one. So he
(06:28):
breast conserved again, did a lumpectomy, that'sprobably 2006. And then December 2006, it was back
again. And at that point I handed several sheets ofA4 type paper over to the nurse and said, can you get
the consultant to read this? And I went into theroom and he was laughing. And I went, what you
(06:49):
laughing at? And he said, you, he said, you're sotenacious. I took my hands and says, well, I know
what I want. And he said, I don't like doingmastectomy without reconstruction. And I said,
well, I'm the one that's found the lump all thetime. If you reconstruct, how am I going to find
anything? He said, well, you might not have to findanything. I said, but for my peace of mind, I don't
(07:10):
want anything false. I want this removed. Andthat's it. I don't want, in my opinion, kinetics
surgery to be reconstructed because it's notbeing done at the same time as mastectomy. And he
said, I'm going to agree with your request, but youmust go and have counseling for three months,
which is our protocol to prove your sound mind tomake this decision. Because I was under 40. And I
(07:38):
was completely and utterly shocked. Thepsychologist saw me. And on her first visit with
me, she's went, what you doing here? I explained.And she went, but this is coming up to be your
seventh operation on the same side. I said, yes, Isaid, how, what do you think about me? What do you
think about my situation? She went, I completelyagree with you. You shouldn't be going through
(08:01):
this. It should be your word is taken and theconsultant listens to you. You shouldn't be
having a battle like this. And then in 2015, when itcame to having the right one done, even though I'd
already had lymphedema in my left torso, I had to gothrough the same protocol of counseling to have
(08:22):
another mastectomy on the other side. I justcouldn't believe what I was going through. But
this is why I'm involved with flat friends becausepeople there are talking about their
experiences. And it's very similar to mine. Andthey're trying to be forced into having
reconstruction, which they don't want. And it'slike, well, what do we do? How do we solve this? But
(08:46):
by sharing our stories with each other and givingeach other peer support, they actually can stand
up for their rights and go, no, we're not havingreconstruction. This is what we want. This is
where we want to be. Please listen to us. But it'sstill ongoing years and years and years later from
what I went through in 2007. Nothing seems to bechanging with the consultants because we're
(09:08):
always battling to get our views across. I'm sosorry that you had to go through that difficult
experience to get, you know, just to not have areconstruction. It sounds absolutely harrowing
on top of everything that you were already goingthrough. In my experience, and, you know, I think
(09:28):
broadly, our NHS is absolutely incredible. Wehave the most amazing healthcare professionals.
But there is occasionally you hear of a story ofsomething insensitive that's been said, which
then stays with you forever, as in your case. Whatwould you say to healthcare professionals,
perhaps who are in the beginning of their career,whether consultants or nurses or junior doctors?
(09:51):
In terms of speaking to people who have received abreast cancer diagnosis. Be aware of what they
want. Listen to the patient. Don't assume you knowit all, because the patient knows their own body
and the patient knows what they want. It's apersonal choice whether you have reconstruction
(10:16):
or choose to go flat. And it's up to you whether youchoose to listen to the patient and be aware of
their needs. And don't turn around and say like onehealth professional did to me when I was
recovering from my mistake to me. You're not aproper cancer patient because you haven't had
(10:38):
chemotherapy. It's unthinkable really thatthese things can be said in a medical setting and,
you know, they must affect you so much. But I'm gladthat you're speaking up about it. You mentioned
the Flat Friends Facebook group that you're amember of. How helpful is that community to you? I
(11:03):
found it helpful when I was going through my secondmistake to me because I went, I'm going through all
these battles again and other people were saying,we've had the same issues. This is where we're at
and the peer support is great. But also throughthat Flat Friends page, we also discovered that if
you have separate mastectomies like I had, youstill get called for breast screening, which is
(11:31):
laughable when there's nothing to mammogram. Andit's like, what do we do? How do we cope with this?
And it's getting the message across of getting thebreast screening service to join up with the GP
surgeries or consultants to say the records arethey've had single mastectomies. Please be aware
(11:52):
that they are not eligible for breast screening.So is there another way that you can be looking out
for ongoing problems when you haven't hadreconstruction? Yeah, there's all different
ways of doing things. And I can't imagine what it'dbe like to have a mammogram when you've had
(12:16):
reconstruction because of that would be really,really painful in my opinion. But everybody's
different. Everybody has their own choices. ButI'm lucky with the choices I've made. I'm really
happy with the choices I made. I'm glad I stuck tothem because I'm much happier than I was when I was
lopsided. I called myself lopsided luscious in2007. And I called myself your flatmate. That's my
(12:42):
way of coping with what's happened to me. Andbecause I've got a smile on my face, people don't
notice what's missing. I've had people reallyunderstand my situation. And they've been so
helpful. And they go, it's okay. When a member of mystaff says, but she's not gone for a mammogram, and
another member of staff will go, she doesn't needto because they've got my situation. They've
(13:06):
understood it. But if somebody's new and not usedto the terminology, they don't understand what's
going on. Would you be comfortable telling usabout your disability and how long you've been in a
wheelchair? Yeah, my disability was diagnosed in2010. It started in 2006, aggravating me. I was
(13:30):
walking up a hill in Shrewsbury. And I couldn'twalk up the hill. So I turned around and walked up
the hill backwards, got to the office. And my bosssaid to me, you don't look great. I said, I don't
feel great. He said, what's the matter? I said, myback hurts. And he said, don't come back into work,
too soon a GP. So I went and saw a GP who thought Ipulled a muscle in my back. And said, if you know
(13:53):
better in three weeks, come back. I went back. Andthey started doing tests. And then I had the breast
cancer again in 2007. So the test got postponed.And then I got the full diagnosis in 2010, which was
a six page letter, which is an extra vertebrae in mylower spine from birth, hip dysplasia from birth,
(14:17):
osteoarthritis, spondylitis, andfibromyalgia, all in one letter. Nothing was told
to me verbally. I just had to deal with all of that inthat letter. And it was like, what? I'm trying to
cope with this. But when I got told in person that Iwould need a wheelchair, I went, that's okay. And
(14:44):
they went, how come you're so blasé about it? And Isaid, I had an MRI scan in 2010. I said, you told me at
that point I got a shadow on my spine, and you left mefor three weeks waiting for the results. And I
said, when you told me that it needed, I needed awheelchair, it was like, that's okay. And they
went, why? And I said, the word shadow on my spine inmy head meant that I thought I got bone cancer. And
(15:14):
therefore thought I was only had 18 months to live.So I'd been writing a bucket list. And at that
point, they went, like bold moment. And they went,why did you think that? So because I had breast
cancer, I thought it had gone into my bones. Andthey went, okay. And then within six months of that
conversation, I got invited back to the hospital,where there was a miller meeting, and they were
(15:41):
talking about setting up a soft tissue, Jimmy unitat the hospital for sarcoma patients. So out of a
negative experience, again, positives havecome. And so don't be afraid to voice your opinions
on what's gone right or what's gone wrong for you orwhat you imagined to be happening to you, because
(16:06):
you never know what outcome can come from that.Yeah, absolutely. And I think it also just
highlights the importance of healthcareprofessionals being open and honest with us.
Because when you've had cancer, quite rightly,you do jump to those conclusions, you know, I have
secondary breast cancer, and I any ache pain orwhatever that I have, I always think, Oh, it must be
(16:29):
related to breast cancer spreading. And it'snatural that you had that opinion about that it
could be breast cancer in your spine. I'm glad itwasn't, but it sounds, you know, you obviously had
this horrible letter with all these differentdiagnoses. And have you experienced any extra
(16:54):
obstacles that being disabled has added to yourexperience of breast cancer? Yeah. X-ray
departments, the cubicles cannot accommodate awheelchair. Yeah. So because I am an expert
patient, I know that if I haven't got a bra on, andI've got a T-shirt with no metal in it, and I've got
(17:19):
trousers with no metal in it, I can be scannedwithout having to change into one of those stupid
gowns or shawls that my local hospitals have nowgot. Because I can't get into the changing room. I
don't want to be a nuisance. I don't want toincrease their laundry bills. So I just take stuff
that I can easily wash at home, put a T-shirt on, anda pair of tractors, because there's no metal in
(17:46):
them. It's easy to do. And I haven't got to worryabout, Oh, I've got metal in me, or I've got pieces
of jewelry around me. I only go with what I need tohave. So I go in my spectacles, no watch, just
T-shirt and tractors. And then it's easy to be indepartment like that. And it's far easier for them
(18:07):
because I can just get wheeled into the x-raydepartment from my scan. And it's so much easier,
but it's understanding and knowing what isacceptable and what isn't. Yeah, I know that
having spoken to a friend of mine, an author, ChloeTims, who I'm sure wouldn't mind me mentioning
her, she's got a brilliant book called The SeaWomen, which is actually about swimming. She's in
(18:31):
a wheelchair, and she talked to me about the stuffthat as a person not in a wheelchair, I would never
have known about access to restaurants and justbeing able to go to the toilet in the restaurant,
which is often just not possible in a wheelchair.What are the areas of your life where you feel there
need to be improvements for wheelchair users,whether in the hospital setting or elsewhere? I'm
(18:53):
involved with railway companies. So I'm involvedwith a couple at the moment. I'm involved with
Westminster trains and cross-country to improveaccess there. If you're on a train and the toilet
doesn't work, especially for a wheelchair user,that is a no-no. So we have to be catered for and not
(19:15):
just assume that it's all okay. It's not okay. Weall need to be catered for. We all need the space. We
all need to be able to do what we need to do. Nopassengers should be sat on the floor. No
passengers should be overcrowded. And when I'm inmy wheelchair and I get put on a train and luggage is
(19:36):
in the wheelchair space, even though it sayswheelchair priority, more people put their
luggage in it because there's no space for luggagein the carriages. But the trouble is when we get put
on the train like that, the guards have to shout forthe luggage to be moved so we can get where we need to
be on the train. And the passengers are so, she cango on another carriage, can't she? Or she can go on
(19:57):
another train. No, I'm entitled to go where I'vepaid to go. Of course, yeah. I shouldn't be told. I
can't go where I need to go because luggage is in theway. Taxis are another, wearing a contention,
private hire. They'll pick my wheelchair up by onehandle, drop it on the floor and go, oops, we broke
(20:17):
it. Or they'll do what one person did, which wasthey've loaded my wheelchair in the car and then
decided they didn't want to take me. So theyunloaded it and said, we prefer to take a drunk than
you. I've also been to Birmingham where a black cabturned around and said, can't you leave the
wheelchair behind and just get in? I've also hadanother one, one we pre-booked taxi saying, I
(20:46):
wasn't told about the effing wheelchair. I want tocharge extra for it. That's illegal. But these are
the battles I have daily. So it's hard when you wantto go out and it's really difficult. And then
there's no regulation until 2030. It's driverdiscretion on buses if they take a wheelchair. I'm
(21:07):
so sorry that, you know, that all of these things in2024 are still so difficult for someone in a
wheelchair. It's, it really is shocking.Initially I was given an attendant wheelchair
because in 1999 when I had my fourth operation,because it affected some of the lymph nodes, I had
limited movement on my left arm. So that's most ofthe movement I had. I couldn't raise it above my
(21:30):
head. And then in 2009, I was given the chance to goto rotary disabled championships in Goventry,
where I was given the chance to bench press. Andthat night in the hotel, when I was having a shower,
having bench pressed, I felt my shoulder was a bitdifferent in the shower. And I decided to push my
(21:57):
arm a bit further than I normally could. And beforeyou know it, it was above my head. And it was like,
wow, that exercise, that movement has just freedmy arm up. So I went to rotary and told them what had
happened. And the next morning they went, you weretrying to tell us that the disco music was on, we
(22:20):
couldn't understand what you're talking about.Are you hurt? I went, no, it's the opposite. The
issue was I'd got limited movement in my left arm.But by being given an opportunity to try bench
pressing, I've got the use of my arm back. And theywent, wow, really? I went, yeah, that's exactly
what's happened. So when I got back from thosechampionships, my attendant wheelchair got
(22:42):
traded in at wheelchair services for a selfpropelling one. So I'm now a lot more independent
than I was then. Oh, that's brilliant. And I thinkthat that brings us nicely into swimming after
surgery, which is something that you set up. Canyou tell us about that and how it works? We set up
Swim After Surgery, Brackets SAS in Telford tohelp a friend who'd had a mistake to meet and she'd
(23:09):
had a mistake to meet in 2008. We were talking inApril of how I could help her and she said I want to be
able to learn swim back, can't afford the lessons.That was a Sunday night in April. I'm not one that
sits and just thinks I actually do. So at Harper'sDay on the Monday morning, I rang the swimming
coordinator at the local authority and says I wantto set up MSG, mastectomy swimming group for
(23:33):
ladies with cancer. That's a good idea but go tobreast cancer sport group and get feedback. Oh
boy, did I get feedback. Four sheets of A4 paper.You've been too narrow minded. Lumpectomies
leave you to go to two. I thought okay, back to thedrawing board and what we're going to call this
now. So SAS came to mind and I had to work out howwe're going to form words to fit SAS because I
(23:59):
wanted to empower ladies and make them feel betterabout themselves. So swimming after surgery came
to mind and I was saying brackets SAS so we have alaugh with it because I'm not one that's going to be
called in to solve military problems but it's justa way of having a giggle. So we set it up so the
(24:21):
council initially found funding for it for sixmonths through their contacts and then after that
I formed a committee, went to Macmillan, got agrant for it to continue it. So I got a grant for
three grand from Macmillan and then after that itwas how can we sustain this. So we do fundraising
(24:45):
activities like making poppies or fundraisingchallenges of other sorts and then because I'm
involved with other groups I learned how tocrochet butterflies so we make pink and yellow
butterflies because the yellow is to remindsomebody that's passed and the pink is to remind
(25:06):
them of life to the full and that's the colour of ourpoppies as well. So a bright pink and bright yellow
to help keep funds going but while we're notrunning at the moment what we're doing for people
in treatment is we're making crochet shawls freeof charge, everything's donated, we just send
(25:27):
them out in the post and they can put them on theshoulders and when they're cold take them off when
they're hot and it's easy because they haven't gotto worry about a cardigan or a jumper, they've just
got something they can have over their legs or overtheir shoulders when they're cold and they get to
keep them and do what they want. And is there a waythat our listeners can find out more about this?
(25:48):
Yeah I've got my Facebook page swimming aftersurgery and they can contact me there and if others
want to get involved and make them then that's finewith me so yeah happy to do what we can. Brilliant
well we'll share those links in the show notesthank you. I'm Gareth, the editor of Vita
(26:11):
magazine. Vita is Breast Cancer Now's magazinefor anyone affected by breast cancer. It's full of
inspiring real-life stories, expert tips oncoping with the effects of breast cancer and
articles on health and well-being. In our newspring issue you can read about a mother and
daughter who were both diagnosed with breastcancer 12 years apart, find out the latest in
(26:34):
breast cancer research, get tips on coping withfatigue, read about the benefits of getting
outdoors and much more. Subscribe to Vita Now atbreastcancernow.org forward slash vita. I'm a
big swimmer myself. I had a massive surgery lastyear to remove my stern and bone and for me getting
(26:55):
back to swimming after surgery was such a hugething to go through but it was so helpful and just
really helped my mind as well as my body. What doesswimming mean to you in terms of your mental health
and your physical health too? Swimming means anawful lot to me because a lot of people are ashamed
because I'm in my wheelchair that I can't swim but Iactually swim without using my legs so it helps
(27:20):
keep my arm movement reduces lymphoedema, ithelps me be more active and when I have been
swimming I sleep so much better. Yeah I recognizethat. Swimming is a great activity. Yeah
absolutely. Before we move on to talk about yourwork as a breast cancer voice and I'm at Mill and
(27:42):
Voice I just wanted to ask you about dignitybecause dignity is something that you've spoken
about in your work and it's a huge and importanttopic when we talk about hospital treatment, when
we talk about cancer, when we talk aboutpalliative care and even death. What does the word
dignity mean to you and how can we achieve it?Dignity for me as a young cancer patient I'm going
(28:05):
back to the days of when I had my first treatment.Dignity is being respected as a young adult and
being told what I needed to know and not assume thatI don't need to know it. Dignity is respecting
(28:26):
people's wishes so when somebody says they want amastectomy they should be listened to and their
reasoning should be listened to as to why they wanta mastectomy without reconstruction or whatever
it is. There might well be a reason behind it, itcould be family history, it could be worry, it
(28:46):
could be we've had enough of this please help, itcould be whatever but just listen to patients what
they want. Dignity means to me that everyoneregardless of age, creed, whatever should be
listened to and not judged and consultants,doctors don't know at all please listen to the
(29:12):
patient if the patient is worried please listen tothem and check because doctors don't want to get
sued for getting it wrong a patient might knowtheir own body better than the consultants. That
if I may give a personal recommendation thatreminds me of Dr Catherine Manix the palliative
(29:32):
care doctors book called Listen which is all aboutthe power of just listening to to get through so
many different things and she talks about dignitythere as well so maybe we'll put that link in the
show notes as well. So moving on you are a breastcancer voice which is part of Breast Cancer Now's
(29:54):
initiative to get direct feedback from patientsto shape the charity's work what did it why did you
feel it was important to offer your voice and yourexperiences? I've been part of email campaigns
for ages and anything Breast Cancer Now wassharing I was emailing my MP dealing with
(30:14):
campaigns online and I decided well I've got avoice I use it with Macmillan why not use it with
Breast Cancer Now and the other thing that I did in2022 I did their 10 mile swim in July and I was moving
(30:35):
house at the time and I'd managed to do five milesdue to five different days so I'd done a mile a day
and I knew on the weekend I was moving all my stuff atthe weekend and I knew I wasn't going to be having
time to fit the swimming in with the move so on theFriday time was getting short and I thought I'm
(31:02):
going to struggle to get this all fitted in so I wentto the pool where I swim in and I started off I did 86
lengths then 86 lengths then 86 lengths then 86lengths and another 86 lengths so I'd done five
miles in one go I got at the pool quite proud ofmyself and was a little bit shaky got in my
(31:30):
wheelchair and flopped got changed on one of thestaff said to me you okay I said I will be I said just
got to catch my breath and she went what have youdone I said I've just completed my 10 mile swim and
she went you've done five miles the other dayhaven't you I went yeah she said does that mean
you've done all five today I wait yeah she went I'llgo get you a drink at that point you need sugar and
(31:55):
the person who picked me up says I don't know what tosay well done or stupid yeah so yeah it was one of
them but it was I was adding that I was going to do itand I raised you the 300 pound for breast cancer now
so I was glad I did it and yeah it really pushed me toget out there and keep myself fit so yeah breast
(32:19):
cancer now raise awareness of issues like we'vebeen talking about today but they also need to know
that there are things that need to change mybiggest thing that I want to change is health and
life insurance because when I was 22 no one expectsto get cancer and you work in and you're just
(32:40):
starting now so you want to enjoy life you wouldn'tthink of getting insurance in place or I certainly
didn't I wish I had because the impact now is I'm insocial care for the rest of my life because I can't
mortgage because I can't get love insurance andthat's tough so if I was talking to my younger self
(33:03):
at 20 it'll be as soon as you start work getinsurance income insurance income protection
all the other stuff get it because you never knowwhen you come to apply for a mortgage what you're
going to need but definitely get insurance inplace it might not seem important right now but
believe me with what I've gone through I wish I'dhad it because I'm in social care now for the rest of
(33:28):
my life I can't get a mortgage and when you start outand you want to work you're aiming to get your own
home it's so difficult and I wish I had that cushionbut I haven't I've got no private pension so I'm
(33:50):
going to be relying on state pension I'm relying onstate housing and it's not the way I want to be I
don't want to be a burden society I want to do stuffand help others and I'm hoping that my story will
encourage the industries to really look at shechecked herself she was doing everything right
(34:11):
why she penalized yeah and I really want thatmessage to come across because that's how I feel
and have you been able to access financial supportI've got DW I've got benefits like employment
support allowance and pay it and that's it and likea housing benefit but it's not what I wanted I it's
(34:33):
not not the way I wanted this I'm at mill and dogrants to help people who've changed shape gained
weight lost weight whatever and they also do othergrants to help teenagers get a laptop when they
want to stay in touch with their friends but it'sit's tough yeah I understand that you've also had a
(34:55):
really humiliating experience in in when you weretrying to claim the pip benefit is that right no
that was when I was on incapacity benefit I got toldto go to the job centre the day before my mastectomy
in 2007 and I said to DWP at the time I said I've gotmastectomy on Wednesday but you want me to send the
(35:26):
job centre and they were if you don't your benefitswill be stopped immediately so I turned up a job
centre the day before my hospital consent letterpassed it tentatively over the counter to the lady
who was seeing me tried to keep my composure whichis not easy when you're fretting about a
forthcoming major operation and she saw the stateI was in and went is somebody with you I said yes so
(35:51):
she got the person with me to come over and I had adrink of water and she said take her home she's
genuine we won't be pestering her and then inNovember 2007 months after I'd had the mastectomy
I got called into medical services as to why I was onincapacity benefit and I turned up I'd got
(36:15):
bronchitis my GP had told me to not go and they saidif you don't turn up your benefits are going to be
stopped immediately this is their favouritephrase so turned up and this assessor said I want
you to bend down touch your toes and at that point Icouldn't do it and we didn't know what the problem
was and I just said I've got a lump on my spine whichdoesn't allow me to do that and she said where's
(36:37):
your lump and I wish I'd never told her because Itold her where it was she didn't just press on it
once she didn't just press on it twice she pressedon it three times and each time made me scream
horrendously and then she said you're notcooperating with what I'm getting you to do I need
you to show me your mastectomy to go I've proofyou've had one I went what and she said if you don't
(37:02):
your benefits going to be stopped immediately andI was part of a Macmillan campaign online in 2021
with the DWP asking why they do this and thepatients who were also there were saying this
happened to me this happened to me this happened tome and some of them are recently is three weeks
prior to that meeting and it was like I thought allthis had stopped I complained on this in 2007 to get
(37:29):
this stopped I wrote to the DWP I wrote to my MP why isthis not stopping this is barbaric and the DWP are
wasting so much money on these assessors when allthey've got to do is look at the hospital records of
that patient but they're not doing that they'restill getting these assessors to come out and even
(37:49):
when I switched over from disability livingallowance to PIP they sent her home assessor out to
me a lone male to a lone vulnerable female goodnesssake luckily I had a carer who was able to open the
door to them and said if I wasn't here she wouldn'tbe seeing you and assessor said what do you mean
well a lone female usually common sensesafeguarding but it was like what do I do so he came
(38:16):
in I was I was lying in bed because it was really badday I couldn't get out of bed and he said what's your
conditions I started listening he said by the timehe got an hour I said here's all my medical records
passing to him he went I haven't got time to read allthat lot I said well that lot proves that I've got
all this anyway we have to talk to you and listen toyou that's it he said we do not take any record any
(38:44):
records away we don't notice anything I just don'tget it I don't understand why health
professionals letters aren't accepted it wouldsave an awful lot of money with the DWP it would just
mean it was so much easier for genuine claimantsyeah absolutely yeah I can't imagine how how all
that made you feel as well you know you'reobviously still incredibly frustrated by it I am
(39:11):
but as I say it's just a matter of common sense ifsomebody's got the medical record folders with
every letter that they've ever had everydiagnosis they've ever had that should be
accepted in my opinion yeah and that should just betaken electronically or when you've you
obviously get us to supply it they they surelydon't need to come around to your house to do that
when they've got the documents but they do yeah Imean it's wonderful that you are using all these
(39:39):
negative experiences and turning them intopositive experiences and talking and sharing
your voice and your experiences so that you canhelp others and that's what you're doing with this
podcast today which is fantastic as well asworking with breast cancer now you're also
involved with Macmillan on a domestic abuseinitiative could you tell me about that yeah
(40:00):
unfortunately because I have had cancer I've alsobeen the victim of domestic abuse and it's subtle
one the way they can pick it up now is if you're latefor appointments on a regular basis and you're
going for x-ray or going to a scan theradiographers are now trained to ask is
(40:28):
everything all right we've noticed you've beenlate for a few appointments or you seem a bit
stressed what's wrong and because you're inradiography on your own because that's the
natural segregation it's a great way of being ableto open up and say exactly how you're feeling and
(40:48):
some people might say I'm okay but after three orfour sessions that go into for a scan or whatever
they actually feel actually we can get on with thisperson who's scanning us or seeing us and they
might open up and go actually everything's not allright I'm worried that I haven't got enough money
(41:12):
in my bank account and yet I know I had money in thereor the person who's bringing me to hospital is
always making me late it's like they don't want tobother or it could be actually I'm being beaten
back and below and I really need help but on averageit takes 27 attempts to leave a domestic abuse
(41:34):
situation so you cannot judge you cannot say tosomebody we'll get the police we'll get you into a
refuge that might not work for everybody just letthem do it in their own time and in their own space I
was unique in that I booted the perpetrator out inretaliation they took my motability car they took
(41:58):
all my mobility aids they'd gone around the back ofthe house removed my wheelchair got my blue badge
and basically were trying to jail me I reported mymotability car stolen got permission from the
police to get it back and on the Sunday morningafter I got it back I got a message to ring 101 and
while I was on the phone a police car with bluelights turned up two police officers got out were
(42:24):
running up my path and just at that point we'destablished the motability car was mine they ran
down away from the door and got back in the car anddrove off they were there to arrest me for stealing
my own car back I'm so sorry for this entirehorrific experience that you've been through and
(42:48):
again all I can say is thank you for turning itaround and finding ways to talk about it and help
others because that initiative of healthcareprofessionals being there to subtly check and ask
and get you on your own to ask you whether you'reokay whether everything's okay at home I've
(43:08):
actually seen those posters in my own hospital inthe ladies toilets saying if you're experiencing
any kind of domestic abuse or coercive control athome. The other thing is domestic abuse doesn't
just happen to females it happens to males too sowe're also educating the professionals to listen
to them as well yeah because it can be the patient isthe abuse in the carer or vice versa and these
(43:39):
things really have to be considered it's not aone-way straight. Absolutely and I think you know
we're here on the breast cancer now podcast andwe've covered so many different topics today and
there's no way we can cover them all in the depththat they deserve but I think just one thing from my
perspective is that you know when you are in thehealthcare setting you've got a breast cancer
(44:02):
diagnosis you do have access to medicalprofessionals and whilst they may not be the
experts in mental health or in domestic abuseissues if there is someone in the hospital who you
trust and who you feel you can confide in then youcan talk to someone and say you know I'm having
these issues at home and hopefully in most casesthey'll be able to point you in the right direction
(44:26):
and give you the support that you need in some way sothank you for telling us about the work that you've
been doing with Macmillan. If people would likemore resources to help with disabilities in
breast cancer care is there anything that youcould recommend? Just look around and see what's
(44:50):
available and if there isn't something that theyreally need let Breast Cancer know because they
can contact people like myself, got experience ofit and we could go well this might be useful that
might be useful but it's also when the hospitalsare building new sites be aware that x-ray
(45:10):
departments aren't set up for people inwheelchairs even though that's where people go
with broken legs they end up in the corridorbecause they're waiting outside in the in the
corridor in the wheelchairs because there isn'troom in the waiting room for them and it's
hilarious it shouldn't be like that but that's thereality of it. There is a question that we ask
(45:35):
everyone on this podcast and that is if you couldchange one thing in terms of breast cancer
diagnosis treatment and beyond in the comingyears what would it be? Listen to the patients and
for those that want mastectomies that do not wantreconstruction please please please listen to
them and listen to their reasons as to why do notforce us to go through the three months counseling
(46:00):
to prove we're a sound mind to make that decisionthat's degrading we don't want mental abuse like
that we need to be supported and that is just my onewish. Fiona thank you so much you've shared so many
of your very personal stories here and I think themessage that we've got from this is that you know
(46:22):
you're sharing your stories in order to helpothers and on so many different so many different
areas and I'm so so grateful for you and I'm surethere's a lot of people that will feel supported
and feel helped and feel seen by some of the thingsyou've said today so thank you so much for joining
us on the breast cancer now podcast. Thank you Ihope it is useful and if you're not sure of
(46:44):
something please speak up please ask for whateveryou want because if you don't ask the question you
never know what what that could thank you Fiona. Ifyou enjoyed this episode of the breast cancer now
podcast make sure to subscribe on apple podcastsspotify or wherever you get your podcasts please
also leave us a rating or review on apple podcastsand perhaps recommend it to someone you think
(47:08):
would find it helpful the more people we can reachthe more we can get breast cancer now's vital
resources to those who need them you can findsupport and information on our website
breastcancernow.org and you can follow breastcancer now on social media at breastcancernow.
All the links mentioned in this episode are listedin the show notes in your podcast app. Thank you for
(47:30):
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. This
episode we're talking about breast cancer andovercoming obstacles with Fiona Stevenson.
(00:30):
Fiona is one of Breast Cancer Now's voices, adiverse group of people whose lives have been
affected by breast cancer and who now help shapethe charity's work by sharing their insights and
personal experiences. Fiona is a wheelchair userand an active campaigner for disability issues in
her local area of Telford and across the UK. She'salso the founder of Swimming After Surgery, a
(00:52):
local organisation that helps people get back ontrack with swimming. She first found a lump more
than 30 years ago and she's here to talk to us aboutthe additional obstacles she has faced through
breast cancer and how she now uses her voice to helpothers. Fiona, welcome to the Breast Cancer Now
podcast and thank you for joining us. Thank you,Laura. Could you start by telling us when and how
(01:14):
you were diagnosed with breast cancer? I found alump at the age of 22. I went to my GP. He said, wait
for two periods to pass and if it hadn't gone orgrown, go back. So I went back. They did a
lumpectomy in my local hospital and I had the lumpremoved. Didn't think anything more of it. Didn't
(01:38):
even think about the word cancer and then 18 monthslater, I had another lump in my left breast. Had
that removed at a different hospital. Had my thirdoperation at the age of 31 and that didn't go well
and then I had to have the wound quarterised closedeight months later and it was after that I noticed
(02:07):
the scar didn't look right and I went back to my GPand said, oh, because you're aged, it won't be
cancer, but you need to see the breast consultant.Saw the breast consultant, had an aedalbiopsy. He
said he wouldn't need to see me again. I got home toan answer phone message, which was the worst way of
being told. The consultant had left an answerphone message on the Thursday, which I received at
(02:29):
half past six at night when I got home from work. So Ihit the answer phone button and the message was not
good news. So I rang the hospital the next day.Couldn't get hold of him because he was in surgery
all day. So I arranged for the hospitalappointment the following Tuesday. I turned up
and the nursing staff were saying, oh, you need totake your top off. We need to do another biopsy. I
(02:51):
said, no, you don't. I just need to speak to theconsultant. At this point, a nurse came in wearing
a blue and white uniform but hiding her lanyard andI didn't know what that significance was. And then
two weeks after the operation, she appearedwearing her lanyard and the lanyard was green and
white, Macmillan. And that was my firstexperience of this is cancer. When I asked the
(03:22):
consultant what the outcome was, he said, well,we've got it all. It stopped the carcinoma in situ,
which is early stage breast cancer. But by the way,your previous three operations were also that the
carcinoma in situ. I went, well, why did no one tellme? He said because you didn't have chemotherapy.
No one thought they had to tell you. So I was 32 atthat stage. So 10 years have passed since you had
(03:45):
originally found that lump and you did not know itwas cancer all that time. No. How did that make you
feel when you then heard it was cancer? I wasshocked, but relieved because as he said, he got it
all. But it was, why did no one tell me? I was angryand disappointed. But through that, I wanted to
(04:11):
change things for those young people thatfollowed my footsteps. Because by doing things
early, you don't necessarily need diagnosis. Soyears later, I became a men and cancer voice. And
then I've been involved with breast cancer now aswell, campaigning and doing other things since
(04:35):
2006, things interlink. And it's vital thatmessages get across and you can't have one charity
not interlinking with another. So that's why I'minvolved with an awful lot of stuff because I think
the collaboration saves everybody repeatingthings over and over and over again. It saves
(04:57):
reinventing the wheel. Yeah, absolutely. And Ithink, you know, you're doing something really
important because you've had this experience offeeling like, I guess you had the wool pulled over
your eyes and it's very hard to advocate foryourself. It's very hard to know what treatment to
get or how to look after yourself if you don't knowwhat's wrong with you. And we are going to talk a bit
(05:20):
about your experience with breast cancer now andwith McMillan in a little bit. But can you tell me
what treatment and surgeries did you have afteryou found out that it was breast cancer? I had some
six lumpectomies on the left side spanning fromthe age of 22 to 2015. My left mastectomy was done in
(05:43):
2007. And then I had a right mastectomy in 2015. Soaltogether I've had eight breast cancer
operations. Wow. And did you end up havingchemotherapy as well? No, no chemo, no
radiotherapy, just the eventually themastectomy is because I had to fight to get the
(06:04):
mastectomy on the left breast because it was myseventh operation. And when it came to my sixth
one, I said to the consultant, can I have amastectomy because I'm fed up with going through
this and you're breast conserving all the time.And he said, well, your first marriage has failed,
you're in between man, you've got better chance offinding a man with two breasts than one. So he
(06:28):
breast conserved again, did a lumpectomy, that'sprobably 2006. And then December 2006, it was back
again. And at that point I handed several sheets ofA4 type paper over to the nurse and said, can you get
the consultant to read this? And I went into theroom and he was laughing. And I went, what you
(06:49):
laughing at? And he said, you, he said, you're sotenacious. I took my hands and says, well, I know
what I want. And he said, I don't like doingmastectomy without reconstruction. And I said,
well, I'm the one that's found the lump all thetime. If you reconstruct, how am I going to find
anything? He said, well, you might not have to findanything. I said, but for my peace of mind, I don't
(07:10):
want anything false. I want this removed. Andthat's it. I don't want, in my opinion, kinetics
surgery to be reconstructed because it's notbeing done at the same time as mastectomy. And he
said, I'm going to agree with your request, but youmust go and have counseling for three months,
which is our protocol to prove your sound mind tomake this decision. Because I was under 40. And I
(07:38):
was completely and utterly shocked. Thepsychologist saw me. And on her first visit with
me, she's went, what you doing here? I explained.And she went, but this is coming up to be your
seventh operation on the same side. I said, yes, Isaid, how, what do you think about me? What do you
think about my situation? She went, I completelyagree with you. You shouldn't be going through
(08:01):
this. It should be your word is taken and theconsultant listens to you. You shouldn't be
having a battle like this. And then in 2015, when itcame to having the right one done, even though I'd
already had lymphedema in my left torso, I had to gothrough the same protocol of counseling to have
(08:22):
another mastectomy on the other side. I justcouldn't believe what I was going through. But
this is why I'm involved with flat friends becausepeople there are talking about their
experiences. And it's very similar to mine. Andthey're trying to be forced into having
reconstruction, which they don't want. And it'slike, well, what do we do? How do we solve this? But
(08:46):
by sharing our stories with each other and givingeach other peer support, they actually can stand
up for their rights and go, no, we're not havingreconstruction. This is what we want. This is
where we want to be. Please listen to us. But it'sstill ongoing years and years and years later from
what I went through in 2007. Nothing seems to bechanging with the consultants because we're
(09:08):
always battling to get our views across. I'm sosorry that you had to go through that difficult
experience to get, you know, just to not have areconstruction. It sounds absolutely harrowing
on top of everything that you were already goingthrough. In my experience, and, you know, I think
(09:28):
broadly, our NHS is absolutely incredible. Wehave the most amazing healthcare professionals.
But there is occasionally you hear of a story ofsomething insensitive that's been said, which
then stays with you forever, as in your case. Whatwould you say to healthcare professionals,
perhaps who are in the beginning of their career,whether consultants or nurses or junior doctors?
(09:51):
In terms of speaking to people who have received abreast cancer diagnosis. Be aware of what they
want. Listen to the patient. Don't assume you knowit all, because the patient knows their own body
and the patient knows what they want. It's apersonal choice whether you have reconstruction
(10:16):
or choose to go flat. And it's up to you whether youchoose to listen to the patient and be aware of
their needs. And don't turn around and say like onehealth professional did to me when I was
recovering from my mistake to me. You're not aproper cancer patient because you haven't had
(10:38):
chemotherapy. It's unthinkable really thatthese things can be said in a medical setting and,
you know, they must affect you so much. But I'm gladthat you're speaking up about it. You mentioned
the Flat Friends Facebook group that you're amember of. How helpful is that community to you? I
(11:03):
found it helpful when I was going through my secondmistake to me because I went, I'm going through all
these battles again and other people were saying,we've had the same issues. This is where we're at
and the peer support is great. But also throughthat Flat Friends page, we also discovered that if
you have separate mastectomies like I had, youstill get called for breast screening, which is
(11:31):
laughable when there's nothing to mammogram. Andit's like, what do we do? How do we cope with this?
And it's getting the message across of getting thebreast screening service to join up with the GP
surgeries or consultants to say the records arethey've had single mastectomies. Please be aware
(11:52):
that they are not eligible for breast screening.So is there another way that you can be looking out
for ongoing problems when you haven't hadreconstruction? Yeah, there's all different
ways of doing things. And I can't imagine what it'dbe like to have a mammogram when you've had
(12:16):
reconstruction because of that would be really,really painful in my opinion. But everybody's
different. Everybody has their own choices. ButI'm lucky with the choices I've made. I'm really
happy with the choices I made. I'm glad I stuck tothem because I'm much happier than I was when I was
lopsided. I called myself lopsided luscious in2007. And I called myself your flatmate. That's my
(12:42):
way of coping with what's happened to me. Andbecause I've got a smile on my face, people don't
notice what's missing. I've had people reallyunderstand my situation. And they've been so
helpful. And they go, it's okay. When a member of mystaff says, but she's not gone for a mammogram, and
another member of staff will go, she doesn't needto because they've got my situation. They've
(13:06):
understood it. But if somebody's new and not usedto the terminology, they don't understand what's
going on. Would you be comfortable telling usabout your disability and how long you've been in a
wheelchair? Yeah, my disability was diagnosed in2010. It started in 2006, aggravating me. I was
(13:30):
walking up a hill in Shrewsbury. And I couldn'twalk up the hill. So I turned around and walked up
the hill backwards, got to the office. And my bosssaid to me, you don't look great. I said, I don't
feel great. He said, what's the matter? I said, myback hurts. And he said, don't come back into work,
too soon a GP. So I went and saw a GP who thought Ipulled a muscle in my back. And said, if you know
(13:53):
better in three weeks, come back. I went back. Andthey started doing tests. And then I had the breast
cancer again in 2007. So the test got postponed.And then I got the full diagnosis in 2010, which was
a six page letter, which is an extra vertebrae in mylower spine from birth, hip dysplasia from birth,
(14:17):
osteoarthritis, spondylitis, andfibromyalgia, all in one letter. Nothing was told
to me verbally. I just had to deal with all of that inthat letter. And it was like, what? I'm trying to
cope with this. But when I got told in person that Iwould need a wheelchair, I went, that's okay. And
(14:44):
they went, how come you're so blasé about it? And Isaid, I had an MRI scan in 2010. I said, you told me at
that point I got a shadow on my spine, and you left mefor three weeks waiting for the results. And I
said, when you told me that it needed, I needed awheelchair, it was like, that's okay. And they
went, why? And I said, the word shadow on my spine inmy head meant that I thought I got bone cancer. And
(15:14):
therefore thought I was only had 18 months to live.So I'd been writing a bucket list. And at that
point, they went, like bold moment. And they went,why did you think that? So because I had breast
cancer, I thought it had gone into my bones. Andthey went, okay. And then within six months of that
conversation, I got invited back to the hospital,where there was a miller meeting, and they were
(15:41):
talking about setting up a soft tissue, Jimmy unitat the hospital for sarcoma patients. So out of a
negative experience, again, positives havecome. And so don't be afraid to voice your opinions
on what's gone right or what's gone wrong for you orwhat you imagined to be happening to you, because
(16:06):
you never know what outcome can come from that.Yeah, absolutely. And I think it also just
highlights the importance of healthcareprofessionals being open and honest with us.
Because when you've had cancer, quite rightly,you do jump to those conclusions, you know, I have
secondary breast cancer, and I any ache pain orwhatever that I have, I always think, Oh, it must be
(16:29):
related to breast cancer spreading. And it'snatural that you had that opinion about that it
could be breast cancer in your spine. I'm glad itwasn't, but it sounds, you know, you obviously had
this horrible letter with all these differentdiagnoses. And have you experienced any extra
(16:54):
obstacles that being disabled has added to yourexperience of breast cancer? Yeah. X-ray
departments, the cubicles cannot accommodate awheelchair. Yeah. So because I am an expert
patient, I know that if I haven't got a bra on, andI've got a T-shirt with no metal in it, and I've got
(17:19):
trousers with no metal in it, I can be scannedwithout having to change into one of those stupid
gowns or shawls that my local hospitals have nowgot. Because I can't get into the changing room. I
don't want to be a nuisance. I don't want toincrease their laundry bills. So I just take stuff
that I can easily wash at home, put a T-shirt on, anda pair of tractors, because there's no metal in
(17:46):
them. It's easy to do. And I haven't got to worryabout, Oh, I've got metal in me, or I've got pieces
of jewelry around me. I only go with what I need tohave. So I go in my spectacles, no watch, just
T-shirt and tractors. And then it's easy to be indepartment like that. And it's far easier for them
(18:07):
because I can just get wheeled into the x-raydepartment from my scan. And it's so much easier,
but it's understanding and knowing what isacceptable and what isn't. Yeah, I know that
having spoken to a friend of mine, an author, ChloeTims, who I'm sure wouldn't mind me mentioning
her, she's got a brilliant book called The SeaWomen, which is actually about swimming. She's in
(18:31):
a wheelchair, and she talked to me about the stuffthat as a person not in a wheelchair, I would never
have known about access to restaurants and justbeing able to go to the toilet in the restaurant,
which is often just not possible in a wheelchair.What are the areas of your life where you feel there
need to be improvements for wheelchair users,whether in the hospital setting or elsewhere? I'm
(18:53):
involved with railway companies. So I'm involvedwith a couple at the moment. I'm involved with
Westminster trains and cross-country to improveaccess there. If you're on a train and the toilet
doesn't work, especially for a wheelchair user,that is a no-no. So we have to be catered for and not
(19:15):
just assume that it's all okay. It's not okay. Weall need to be catered for. We all need the space. We
all need to be able to do what we need to do. Nopassengers should be sat on the floor. No
passengers should be overcrowded. And when I'm inmy wheelchair and I get put on a train and luggage is
(19:36):
in the wheelchair space, even though it sayswheelchair priority, more people put their
luggage in it because there's no space for luggagein the carriages. But the trouble is when we get put
on the train like that, the guards have to shout forthe luggage to be moved so we can get where we need to
be on the train. And the passengers are so, she cango on another carriage, can't she? Or she can go on
(19:57):
another train. No, I'm entitled to go where I'vepaid to go. Of course, yeah. I shouldn't be told. I
can't go where I need to go because luggage is in theway. Taxis are another, wearing a contention,
private hire. They'll pick my wheelchair up by onehandle, drop it on the floor and go, oops, we broke
(20:17):
it. Or they'll do what one person did, which wasthey've loaded my wheelchair in the car and then
decided they didn't want to take me. So theyunloaded it and said, we prefer to take a drunk than
you. I've also been to Birmingham where a black cabturned around and said, can't you leave the
wheelchair behind and just get in? I've also hadanother one, one we pre-booked taxi saying, I
(20:46):
wasn't told about the effing wheelchair. I want tocharge extra for it. That's illegal. But these are
the battles I have daily. So it's hard when you wantto go out and it's really difficult. And then
there's no regulation until 2030. It's driverdiscretion on buses if they take a wheelchair. I'm
(21:07):
so sorry that, you know, that all of these things in2024 are still so difficult for someone in a
wheelchair. It's, it really is shocking.Initially I was given an attendant wheelchair
because in 1999 when I had my fourth operation,because it affected some of the lymph nodes, I had
limited movement on my left arm. So that's most ofthe movement I had. I couldn't raise it above my
(21:30):
head. And then in 2009, I was given the chance to goto rotary disabled championships in Goventry,
where I was given the chance to bench press. Andthat night in the hotel, when I was having a shower,
having bench pressed, I felt my shoulder was a bitdifferent in the shower. And I decided to push my
(21:57):
arm a bit further than I normally could. And beforeyou know it, it was above my head. And it was like,
wow, that exercise, that movement has just freedmy arm up. So I went to rotary and told them what had
happened. And the next morning they went, you weretrying to tell us that the disco music was on, we
(22:20):
couldn't understand what you're talking about.Are you hurt? I went, no, it's the opposite. The
issue was I'd got limited movement in my left arm.But by being given an opportunity to try bench
pressing, I've got the use of my arm back. And theywent, wow, really? I went, yeah, that's exactly
what's happened. So when I got back from thosechampionships, my attendant wheelchair got
(22:42):
traded in at wheelchair services for a selfpropelling one. So I'm now a lot more independent
than I was then. Oh, that's brilliant. And I thinkthat that brings us nicely into swimming after
surgery, which is something that you set up. Canyou tell us about that and how it works? We set up
Swim After Surgery, Brackets SAS in Telford tohelp a friend who'd had a mistake to meet and she'd
(23:09):
had a mistake to meet in 2008. We were talking inApril of how I could help her and she said I want to be
able to learn swim back, can't afford the lessons.That was a Sunday night in April. I'm not one that
sits and just thinks I actually do. So at Harper'sDay on the Monday morning, I rang the swimming
coordinator at the local authority and says I wantto set up MSG, mastectomy swimming group for
(23:33):
ladies with cancer. That's a good idea but go tobreast cancer sport group and get feedback. Oh
boy, did I get feedback. Four sheets of A4 paper.You've been too narrow minded. Lumpectomies
leave you to go to two. I thought okay, back to thedrawing board and what we're going to call this
now. So SAS came to mind and I had to work out howwe're going to form words to fit SAS because I
(23:59):
wanted to empower ladies and make them feel betterabout themselves. So swimming after surgery came
to mind and I was saying brackets SAS so we have alaugh with it because I'm not one that's going to be
called in to solve military problems but it's justa way of having a giggle. So we set it up so the
(24:21):
council initially found funding for it for sixmonths through their contacts and then after that
I formed a committee, went to Macmillan, got agrant for it to continue it. So I got a grant for
three grand from Macmillan and then after that itwas how can we sustain this. So we do fundraising
(24:45):
activities like making poppies or fundraisingchallenges of other sorts and then because I'm
involved with other groups I learned how tocrochet butterflies so we make pink and yellow
butterflies because the yellow is to remindsomebody that's passed and the pink is to remind
(25:06):
them of life to the full and that's the colour of ourpoppies as well. So a bright pink and bright yellow
to help keep funds going but while we're notrunning at the moment what we're doing for people
in treatment is we're making crochet shawls freeof charge, everything's donated, we just send
(25:27):
them out in the post and they can put them on theshoulders and when they're cold take them off when
they're hot and it's easy because they haven't gotto worry about a cardigan or a jumper, they've just
got something they can have over their legs or overtheir shoulders when they're cold and they get to
keep them and do what they want. And is there a waythat our listeners can find out more about this?
(25:48):
Yeah I've got my Facebook page swimming aftersurgery and they can contact me there and if others
want to get involved and make them then that's finewith me so yeah happy to do what we can. Brilliant
well we'll share those links in the show notesthank you. I'm Gareth, the editor of Vita
(26:11):
magazine. Vita is Breast Cancer Now's magazinefor anyone affected by breast cancer. It's full of
inspiring real-life stories, expert tips oncoping with the effects of breast cancer and
articles on health and well-being. In our newspring issue you can read about a mother and
daughter who were both diagnosed with breastcancer 12 years apart, find out the latest in
(26:34):
breast cancer research, get tips on coping withfatigue, read about the benefits of getting
outdoors and much more. Subscribe to Vita Now atbreastcancernow.org forward slash vita. I'm a
big swimmer myself. I had a massive surgery lastyear to remove my stern and bone and for me getting
(26:55):
back to swimming after surgery was such a hugething to go through but it was so helpful and just
really helped my mind as well as my body. What doesswimming mean to you in terms of your mental health
and your physical health too? Swimming means anawful lot to me because a lot of people are ashamed
because I'm in my wheelchair that I can't swim but Iactually swim without using my legs so it helps
(27:20):
keep my arm movement reduces lymphoedema, ithelps me be more active and when I have been
swimming I sleep so much better. Yeah I recognizethat. Swimming is a great activity. Yeah
absolutely. Before we move on to talk about yourwork as a breast cancer voice and I'm at Mill and
(27:42):
Voice I just wanted to ask you about dignitybecause dignity is something that you've spoken
about in your work and it's a huge and importanttopic when we talk about hospital treatment, when
we talk about cancer, when we talk aboutpalliative care and even death. What does the word
dignity mean to you and how can we achieve it?Dignity for me as a young cancer patient I'm going
(28:05):
back to the days of when I had my first treatment.Dignity is being respected as a young adult and
being told what I needed to know and not assume thatI don't need to know it. Dignity is respecting
(28:26):
people's wishes so when somebody says they want amastectomy they should be listened to and their
reasoning should be listened to as to why they wanta mastectomy without reconstruction or whatever
it is. There might well be a reason behind it, itcould be family history, it could be worry, it
(28:46):
could be we've had enough of this please help, itcould be whatever but just listen to patients what
they want. Dignity means to me that everyoneregardless of age, creed, whatever should be
listened to and not judged and consultants,doctors don't know at all please listen to the
(29:12):
patient if the patient is worried please listen tothem and check because doctors don't want to get
sued for getting it wrong a patient might knowtheir own body better than the consultants. That
if I may give a personal recommendation thatreminds me of Dr Catherine Manix the palliative
(29:32):
care doctors book called Listen which is all aboutthe power of just listening to to get through so
many different things and she talks about dignitythere as well so maybe we'll put that link in the
show notes as well. So moving on you are a breastcancer voice which is part of Breast Cancer Now's
(29:54):
initiative to get direct feedback from patientsto shape the charity's work what did it why did you
feel it was important to offer your voice and yourexperiences? I've been part of email campaigns
for ages and anything Breast Cancer Now wassharing I was emailing my MP dealing with
(30:14):
campaigns online and I decided well I've got avoice I use it with Macmillan why not use it with
Breast Cancer Now and the other thing that I did in2022 I did their 10 mile swim in July and I was moving
(30:35):
house at the time and I'd managed to do five milesdue to five different days so I'd done a mile a day
and I knew on the weekend I was moving all my stuff atthe weekend and I knew I wasn't going to be having
time to fit the swimming in with the move so on theFriday time was getting short and I thought I'm
(31:02):
going to struggle to get this all fitted in so I wentto the pool where I swim in and I started off I did 86
lengths then 86 lengths then 86 lengths then 86lengths and another 86 lengths so I'd done five
miles in one go I got at the pool quite proud ofmyself and was a little bit shaky got in my
(31:30):
wheelchair and flopped got changed on one of thestaff said to me you okay I said I will be I said just
got to catch my breath and she went what have youdone I said I've just completed my 10 mile swim and
she went you've done five miles the other dayhaven't you I went yeah she said does that mean
you've done all five today I wait yeah she went I'llgo get you a drink at that point you need sugar and
(31:55):
the person who picked me up says I don't know what tosay well done or stupid yeah so yeah it was one of
them but it was I was adding that I was going to do itand I raised you the 300 pound for breast cancer now
so I was glad I did it and yeah it really pushed me toget out there and keep myself fit so yeah breast
(32:19):
cancer now raise awareness of issues like we'vebeen talking about today but they also need to know
that there are things that need to change mybiggest thing that I want to change is health and
life insurance because when I was 22 no one expectsto get cancer and you work in and you're just
(32:40):
starting now so you want to enjoy life you wouldn'tthink of getting insurance in place or I certainly
didn't I wish I had because the impact now is I'm insocial care for the rest of my life because I can't
mortgage because I can't get love insurance andthat's tough so if I was talking to my younger self
(33:03):
at 20 it'll be as soon as you start work getinsurance income insurance income protection
all the other stuff get it because you never knowwhen you come to apply for a mortgage what you're
going to need but definitely get insurance inplace it might not seem important right now but
believe me with what I've gone through I wish I'dhad it because I'm in social care now for the rest of
(33:28):
my life I can't get a mortgage and when you start outand you want to work you're aiming to get your own
home it's so difficult and I wish I had that cushionbut I haven't I've got no private pension so I'm
(33:50):
going to be relying on state pension I'm relying onstate housing and it's not the way I want to be I
don't want to be a burden society I want to do stuffand help others and I'm hoping that my story will
encourage the industries to really look at shechecked herself she was doing everything right
(34:11):
why she penalized yeah and I really want thatmessage to come across because that's how I feel
and have you been able to access financial supportI've got DW I've got benefits like employment
support allowance and pay it and that's it and likea housing benefit but it's not what I wanted I it's
(34:33):
not not the way I wanted this I'm at mill and dogrants to help people who've changed shape gained
weight lost weight whatever and they also do othergrants to help teenagers get a laptop when they
want to stay in touch with their friends but it'sit's tough yeah I understand that you've also had a
(34:55):
really humiliating experience in in when you weretrying to claim the pip benefit is that right no
that was when I was on incapacity benefit I got toldto go to the job centre the day before my mastectomy
in 2007 and I said to DWP at the time I said I've gotmastectomy on Wednesday but you want me to send the
(35:26):
job centre and they were if you don't your benefitswill be stopped immediately so I turned up a job
centre the day before my hospital consent letterpassed it tentatively over the counter to the lady
who was seeing me tried to keep my composure whichis not easy when you're fretting about a
forthcoming major operation and she saw the stateI was in and went is somebody with you I said yes so
(35:51):
she got the person with me to come over and I had adrink of water and she said take her home she's
genuine we won't be pestering her and then inNovember 2007 months after I'd had the mastectomy
I got called into medical services as to why I was onincapacity benefit and I turned up I'd got
(36:15):
bronchitis my GP had told me to not go and they saidif you don't turn up your benefits are going to be
stopped immediately this is their favouritephrase so turned up and this assessor said I want
you to bend down touch your toes and at that point Icouldn't do it and we didn't know what the problem
was and I just said I've got a lump on my spine whichdoesn't allow me to do that and she said where's
(36:37):
your lump and I wish I'd never told her because Itold her where it was she didn't just press on it
once she didn't just press on it twice she pressedon it three times and each time made me scream
horrendously and then she said you're notcooperating with what I'm getting you to do I need
you to show me your mastectomy to go I've proofyou've had one I went what and she said if you don't
(37:02):
your benefits going to be stopped immediately andI was part of a Macmillan campaign online in 2021
with the DWP asking why they do this and thepatients who were also there were saying this
happened to me this happened to me this happened tome and some of them are recently is three weeks
prior to that meeting and it was like I thought allthis had stopped I complained on this in 2007 to get
(37:29):
this stopped I wrote to the DWP I wrote to my MP why isthis not stopping this is barbaric and the DWP are
wasting so much money on these assessors when allthey've got to do is look at the hospital records of
that patient but they're not doing that they'restill getting these assessors to come out and even
(37:49):
when I switched over from disability livingallowance to PIP they sent her home assessor out to
me a lone male to a lone vulnerable female goodnesssake luckily I had a carer who was able to open the
door to them and said if I wasn't here she wouldn'tbe seeing you and assessor said what do you mean
well a lone female usually common sensesafeguarding but it was like what do I do so he came
(38:16):
in I was I was lying in bed because it was really badday I couldn't get out of bed and he said what's your
conditions I started listening he said by the timehe got an hour I said here's all my medical records
passing to him he went I haven't got time to read allthat lot I said well that lot proves that I've got
all this anyway we have to talk to you and listen toyou that's it he said we do not take any record any
(38:44):
records away we don't notice anything I just don'tget it I don't understand why health
professionals letters aren't accepted it wouldsave an awful lot of money with the DWP it would just
mean it was so much easier for genuine claimantsyeah absolutely yeah I can't imagine how how all
that made you feel as well you know you'reobviously still incredibly frustrated by it I am
(39:11):
but as I say it's just a matter of common sense ifsomebody's got the medical record folders with
every letter that they've ever had everydiagnosis they've ever had that should be
accepted in my opinion yeah and that should just betaken electronically or when you've you
obviously get us to supply it they they surelydon't need to come around to your house to do that
when they've got the documents but they do yeah Imean it's wonderful that you are using all these
(39:39):
negative experiences and turning them intopositive experiences and talking and sharing
your voice and your experiences so that you canhelp others and that's what you're doing with this
podcast today which is fantastic as well asworking with breast cancer now you're also
involved with Macmillan on a domestic abuseinitiative could you tell me about that yeah
(40:00):
unfortunately because I have had cancer I've alsobeen the victim of domestic abuse and it's subtle
one the way they can pick it up now is if you're latefor appointments on a regular basis and you're
going for x-ray or going to a scan theradiographers are now trained to ask is
(40:28):
everything all right we've noticed you've beenlate for a few appointments or you seem a bit
stressed what's wrong and because you're inradiography on your own because that's the
natural segregation it's a great way of being ableto open up and say exactly how you're feeling and
(40:48):
some people might say I'm okay but after three orfour sessions that go into for a scan or whatever
they actually feel actually we can get on with thisperson who's scanning us or seeing us and they
might open up and go actually everything's not allright I'm worried that I haven't got enough money
(41:12):
in my bank account and yet I know I had money in thereor the person who's bringing me to hospital is
always making me late it's like they don't want tobother or it could be actually I'm being beaten
back and below and I really need help but on averageit takes 27 attempts to leave a domestic abuse
(41:34):
situation so you cannot judge you cannot say tosomebody we'll get the police we'll get you into a
refuge that might not work for everybody just letthem do it in their own time and in their own space I
was unique in that I booted the perpetrator out inretaliation they took my motability car they took
(41:58):
all my mobility aids they'd gone around the back ofthe house removed my wheelchair got my blue badge
and basically were trying to jail me I reported mymotability car stolen got permission from the
police to get it back and on the Sunday morningafter I got it back I got a message to ring 101 and
while I was on the phone a police car with bluelights turned up two police officers got out were
(42:24):
running up my path and just at that point we'destablished the motability car was mine they ran
down away from the door and got back in the car anddrove off they were there to arrest me for stealing
my own car back I'm so sorry for this entirehorrific experience that you've been through and
(42:48):
again all I can say is thank you for turning itaround and finding ways to talk about it and help
others because that initiative of healthcareprofessionals being there to subtly check and ask
and get you on your own to ask you whether you'reokay whether everything's okay at home I've
(43:08):
actually seen those posters in my own hospital inthe ladies toilets saying if you're experiencing
any kind of domestic abuse or coercive control athome. The other thing is domestic abuse doesn't
just happen to females it happens to males too sowe're also educating the professionals to listen
to them as well yeah because it can be the patient isthe abuse in the carer or vice versa and these
(43:39):
things really have to be considered it's not aone-way straight. Absolutely and I think you know
we're here on the breast cancer now podcast andwe've covered so many different topics today and
there's no way we can cover them all in the depththat they deserve but I think just one thing from my
perspective is that you know when you are in thehealthcare setting you've got a breast cancer
(44:02):
diagnosis you do have access to medicalprofessionals and whilst they may not be the
experts in mental health or in domestic abuseissues if there is someone in the hospital who you
trust and who you feel you can confide in then youcan talk to someone and say you know I'm having
these issues at home and hopefully in most casesthey'll be able to point you in the right direction
(44:26):
and give you the support that you need in some way sothank you for telling us about the work that you've
been doing with Macmillan. If people would likemore resources to help with disabilities in
breast cancer care is there anything that youcould recommend? Just look around and see what's
(44:50):
available and if there isn't something that theyreally need let Breast Cancer know because they
can contact people like myself, got experience ofit and we could go well this might be useful that
might be useful but it's also when the hospitalsare building new sites be aware that x-ray
(45:10):
departments aren't set up for people inwheelchairs even though that's where people go
with broken legs they end up in the corridorbecause they're waiting outside in the in the
corridor in the wheelchairs because there isn'troom in the waiting room for them and it's
hilarious it shouldn't be like that but that's thereality of it. There is a question that we ask
(45:35):
everyone on this podcast and that is if you couldchange one thing in terms of breast cancer
diagnosis treatment and beyond in the comingyears what would it be? Listen to the patients and
for those that want mastectomies that do not wantreconstruction please please please listen to
them and listen to their reasons as to why do notforce us to go through the three months counseling
(46:00):
to prove we're a sound mind to make that decisionthat's degrading we don't want mental abuse like
that we need to be supported and that is just my onewish. Fiona thank you so much you've shared so many
of your very personal stories here and I think themessage that we've got from this is that you know
(46:22):
you're sharing your stories in order to helpothers and on so many different so many different
areas and I'm so so grateful for you and I'm surethere's a lot of people that will feel supported
and feel helped and feel seen by some of the thingsyou've said today so thank you so much for joining
us on the breast cancer now podcast. Thank you Ihope it is useful and if you're not sure of
(46:44):
something please speak up please ask for whateveryou want because if you don't ask the question you
never know what what that could thank you Fiona. Ifyou enjoyed this episode of the breast cancer now
podcast make sure to subscribe on apple podcastsspotify or wherever you get your podcasts please
also leave us a rating or review on apple podcastsand perhaps recommend it to someone you think
(47:08):
would find it helpful the more people we can reachthe more we can get breast cancer now's vital
resources to those who need them you can findsupport and information on our website
breastcancernow.org and you can follow breastcancer now on social media at breastcancernow.
All the links mentioned in this episode are listedin the show notes in your podcast app. Thank you for
(47:30):
listening to the breast cancer now podcast.
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