This podcast contains the personal stories, opinions and experiences of its speakers, rather

than those of Breast Cancer Now. Welcome to the Breast 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 author and I live with secondary breast cancer. This

episode we're talking about breast cancer and overcoming obstacles with Fiona Stevenson.

Fiona is one of Breast Cancer Now's voices, a diverse group of people whose lives have been

affected by breast cancer and who now help shape the charity's work by sharing their insights and

personal experiences. Fiona is a wheelchair user and an active campaigner for disability issues in

her local area of Telford and across the UK. She's also the founder of Swimming After Surgery, a

local organisation that helps people get back on track with swimming. She first found a lump more

than 30 years ago and she's here to talk to us about the additional obstacles she has faced through

breast cancer and how she now uses her voice to help others. 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

you were diagnosed with breast cancer? I found a lump at the age of 22. I went to my GP. He said, wait

for two periods to pass and if it hadn't gone or grown, go back. So I went back. They did a

lumpectomy in my local hospital and I had the lump removed. Didn't think anything more of it. Didn't

even think about the word cancer and then 18 months later, I had another lump in my left breast. Had

that removed at a different hospital. Had my third operation at the age of 31 and that didn't go well

and then I had to have the wound quarterised closed eight months later and it was after that I noticed

the scar didn't look right and I went back to my GP and 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 to an answer phone message, which was the worst way of

being told. The consultant had left an answer phone message on the Thursday, which I received at

half past six at night when I got home from work. So I hit 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 hospital appointment the following Tuesday. I turned up

and the nursing staff were saying, oh, you need to take your top off. We need to do another biopsy. I

said, no, you don't. I just need to speak to the consultant. At this point, a nurse came in wearing

a blue and white uniform but hiding her lanyard and I didn't know what that significance was. And then

two weeks after the operation, she appeared wearing her lanyard and the lanyard was green and

white, Macmillan. And that was my first experience of this is cancer. When I asked the

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 tell me? He said because you didn't have chemotherapy.

No one thought they had to tell you. So I was 32 at that stage. So 10 years have passed since you had

originally found that lump and you did not know it was cancer all that time. No. How did that make you

feel when you then heard it was cancer? I was shocked, but relieved because as he said, he got it

all. But it was, why did no one tell me? I was angry and disappointed. But through that, I wanted to

change things for those young people that followed my footsteps. Because by doing things

early, you don't necessarily need diagnosis. So years later, I became a men and cancer voice. And

then I've been involved with breast cancer now as well, campaigning and doing other things since

2006, things interlink. And it's vital that messages get across and you can't have one charity

not interlinking with another. So that's why I'm involved with an awful lot of stuff because I think

the collaboration saves everybody repeating things over and over and over again. It saves

reinventing the wheel. Yeah, absolutely. And I think, you know, you're doing something really

important because you've had this experience of feeling like, I guess you had the wool pulled over

your eyes and it's very hard to advocate for yourself. It's very hard to know what treatment to

get or how to look after yourself if you don't know what's wrong with you. And we are going to talk a bit

about your experience with breast cancer now and with McMillan in a little bit. But can you tell me

what treatment and surgeries did you have after you found out that it was breast cancer? I had some

six lumpectomies on the left side spanning from the age of 22 to 2015. My left mastectomy was done in

2007. And then I had a right mastectomy in 2015. So altogether I've had eight breast cancer

operations. Wow. And did you end up having chemotherapy as well? No, no chemo, no

radiotherapy, just the eventually the mastectomy is because I had to fight to get the

mastectomy on the left breast because it was my seventh operation. And when it came to my sixth

one, I said to the consultant, can I have a mastectomy 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 of finding a man with two breasts than one. So he

breast conserved again, did a lumpectomy, that's probably 2006. And then December 2006, it was back

again. And at that point I handed several sheets of A4 type paper over to the nurse and said, can you get

the consultant to read this? And I went into the room and he was laughing. And I went, what you

laughing at? And he said, you, he said, you're so tenacious. I took my hands and says, well, I know

what I want. And he said, I don't like doing mastectomy without reconstruction. And I said,

well, I'm the one that's found the lump all the time. If you reconstruct, how am I going to find

anything? He said, well, you might not have to find anything. I said, but for my peace of mind, I don't

want anything false. I want this removed. And that's it. I don't want, in my opinion, kinetics

surgery to be reconstructed because it's not being done at the same time as mastectomy. And he

said, I'm going to agree with your request, but you must go and have counseling for three months,

which is our protocol to prove your sound mind to make this decision. Because I was under 40. And I

was completely and utterly shocked. The psychologist 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, I said, how, what do you think about me? What do you

think about my situation? She went, I completely agree with you. You shouldn't be going through

this. It should be your word is taken and the consultant listens to you. You shouldn't be

having a battle like this. And then in 2015, when it came to having the right one done, even though I'd

already had lymphedema in my left torso, I had to go through the same protocol of counseling to have

another mastectomy on the other side. I just couldn't believe what I was going through. But

this is why I'm involved with flat friends because people there are talking about their

experiences. And it's very similar to mine. And they're trying to be forced into having

reconstruction, which they don't want. And it's like, well, what do we do? How do we solve this? But

by sharing our stories with each other and giving each other peer support, they actually can stand

up for their rights and go, no, we're not having reconstruction. This is what we want. This is

where we want to be. Please listen to us. But it's still ongoing years and years and years later from

what I went through in 2007. Nothing seems to be changing with the consultants because we're

always battling to get our views across. I'm so sorry that you had to go through that difficult

experience to get, you know, just to not have a reconstruction. It sounds absolutely harrowing

on top of everything that you were already going through. In my experience, and, you know, I think

broadly, our NHS is absolutely incredible. We have the most amazing healthcare professionals.

But there is occasionally you hear of a story of something insensitive that's been said, which

then stays with you forever, as in your case. What would you say to healthcare professionals,

perhaps who are in the beginning of their career, whether consultants or nurses or junior doctors?

In terms of speaking to people who have received a breast cancer diagnosis. Be aware of what they

want. Listen to the patient. Don't assume you know it all, because the patient knows their own body

and the patient knows what they want. It's a personal choice whether you have reconstruction

or choose to go flat. And it's up to you whether you choose to listen to the patient and be aware of

their needs. And don't turn around and say like one health professional did to me when I was

recovering from my mistake to me. You're not a proper cancer patient because you haven't had

chemotherapy. It's unthinkable really that these things can be said in a medical setting and,

you know, they must affect you so much. But I'm glad that you're speaking up about it. You mentioned

the Flat Friends Facebook group that you're a member of. How helpful is that community to you? I

found it helpful when I was going through my second mistake 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 through that Flat Friends page, we also discovered that if

you have separate mastectomies like I had, you still get called for breast screening, which is

laughable when there's nothing to mammogram. And it's like, what do we do? How do we cope with this?

And it's getting the message across of getting the breast screening service to join up with the GP

surgeries or consultants to say the records are they've had single mastectomies. Please be aware

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 had reconstruction? Yeah, there's all different

ways of doing things. And I can't imagine what it'd be like to have a mammogram when you've had

reconstruction because of that would be really, really painful in my opinion. But everybody's

different. Everybody has their own choices. But I'm lucky with the choices I've made. I'm really

happy with the choices I made. I'm glad I stuck to them because I'm much happier than I was when I was

lopsided. I called myself lopsided luscious in 2007. And I called myself your flatmate. That's my

way of coping with what's happened to me. And because I've got a smile on my face, people don't

notice what's missing. I've had people really understand my situation. And they've been so

helpful. And they go, it's okay. When a member of my staff says, but she's not gone for a mammogram, and

another member of staff will go, she doesn't need to because they've got my situation. They've

understood it. But if somebody's new and not used to the terminology, they don't understand what's

going on. Would you be comfortable telling us about your disability and how long you've been in a

wheelchair? Yeah, my disability was diagnosed in 2010. It started in 2006, aggravating me. I was

walking up a hill in Shrewsbury. And I couldn't walk up the hill. So I turned around and walked up

the hill backwards, got to the office. And my boss said to me, you don't look great. I said, I don't

feel great. He said, what's the matter? I said, my back hurts. And he said, don't come back into work,

too soon a GP. So I went and saw a GP who thought I pulled a muscle in my back. And said, if you know

better in three weeks, come back. I went back. And they 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 my lower spine from birth, hip dysplasia from birth,

osteoarthritis, spondylitis, and fibromyalgia, all in one letter. Nothing was told

to me verbally. I just had to deal with all of that in that letter. And it was like, what? I'm trying to

cope with this. But when I got told in person that I would need a wheelchair, I went, that's okay. And

they went, how come you're so blasé about it? And I said, 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 me for three weeks waiting for the results. And I

said, when you told me that it needed, I needed a wheelchair, it was like, that's okay. And they

went, why? And I said, the word shadow on my spine in my head meant that I thought I got bone cancer. And

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. And they 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

talking about setting up a soft tissue, Jimmy unit at the hospital for sarcoma patients. So out of a

negative experience, again, positives have come. And so don't be afraid to voice your opinions

on what's gone right or what's gone wrong for you or what you imagined to be happening to you, because

you never know what outcome can come from that. Yeah, absolutely. And I think it also just

highlights the importance of healthcare professionals 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 or whatever that I have, I always think, Oh, it must be

related to breast cancer spreading. And it's natural that you had that opinion about that it

could be breast cancer in your spine. I'm glad it wasn't, but it sounds, you know, you obviously had

this horrible letter with all these different diagnoses. And have you experienced any extra

obstacles that being disabled has added to your experience of breast cancer? Yeah. X-ray

departments, the cubicles cannot accommodate a wheelchair. Yeah. So because I am an expert

patient, I know that if I haven't got a bra on, and I've got a T-shirt with no metal in it, and I've got

trousers with no metal in it, I can be scanned without having to change into one of those stupid

gowns or shawls that my local hospitals have now got. Because I can't get into the changing room. I

don't want to be a nuisance. I don't want to increase their laundry bills. So I just take stuff

that I can easily wash at home, put a T-shirt on, and a pair of tractors, because there's no metal in

them. It's easy to do. And I haven't got to worry about, Oh, I've got metal in me, or I've got pieces

of jewelry around me. I only go with what I need to have. So I go in my spectacles, no watch, just

T-shirt and tractors. And then it's easy to be in department like that. And it's far easier for them

because I can just get wheeled into the x-ray department from my scan. And it's so much easier,

but it's understanding and knowing what is acceptable and what isn't. Yeah, I know that

having spoken to a friend of mine, an author, Chloe Tims, who I'm sure wouldn't mind me mentioning

her, she's got a brilliant book called The Sea Women, which is actually about swimming. She's in

a wheelchair, and she talked to me about the stuff that as a person not in a wheelchair, I would never

have known about access to restaurants and just being 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

involved with railway companies. So I'm involved with a couple at the moment. I'm involved with

Westminster trains and cross-country to improve access 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

just assume that it's all okay. It's not okay. We all need to be catered for. We all need the space. We

all need to be able to do what we need to do. No passengers should be sat on the floor. No

passengers should be overcrowded. And when I'm in my wheelchair and I get put on a train and luggage is

in the wheelchair space, even though it says wheelchair priority, more people put their

luggage in it because there's no space for luggage in the carriages. But the trouble is when we get put

on the train like that, the guards have to shout for the luggage to be moved so we can get where we need to

be on the train. And the passengers are so, she can go on another carriage, can't she? Or she can go on

another train. No, I'm entitled to go where I've paid to go. Of course, yeah. I shouldn't be told. I

can't go where I need to go because luggage is in the way. Taxis are another, wearing a contention,

private hire. They'll pick my wheelchair up by one handle, drop it on the floor and go, oops, we broke

it. Or they'll do what one person did, which was they've loaded my wheelchair in the car and then

decided they didn't want to take me. So they unloaded it and said, we prefer to take a drunk than

you. I've also been to Birmingham where a black cab turned around and said, can't you leave the

wheelchair behind and just get in? I've also had another one, one we pre-booked taxi saying, I

wasn't told about the effing wheelchair. I want to charge extra for it. That's illegal. But these are

the battles I have daily. So it's hard when you want to go out and it's really difficult. And then

there's no regulation until 2030. It's driver discretion on buses if they take a wheelchair. I'm

so sorry that, you know, that all of these things in 2024 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 of the movement I had. I couldn't raise it above my

head. And then in 2009, I was given the chance to go to rotary disabled championships in Goventry,

where I was given the chance to bench press. And that night in the hotel, when I was having a shower,

having bench pressed, I felt my shoulder was a bit different in the shower. And I decided to push my

arm a bit further than I normally could. And before you know it, it was above my head. And it was like,

wow, that exercise, that movement has just freed my arm up. So I went to rotary and told them what had

happened. And the next morning they went, you were trying to tell us that the disco music was on, we

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 they went, wow, really? I went, yeah, that's exactly

what's happened. So when I got back from those championships, my attendant wheelchair got

traded in at wheelchair services for a self propelling one. So I'm now a lot more independent

than I was then. Oh, that's brilliant. And I think that that brings us nicely into swimming after

surgery, which is something that you set up. Can you tell us about that and how it works? We set up

Swim After Surgery, Brackets SAS in Telford to help a friend who'd had a mistake to meet and she'd

had a mistake to meet in 2008. We were talking in April 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's Day on the Monday morning, I rang the swimming

coordinator at the local authority and says I want to set up MSG, mastectomy swimming group for

ladies with cancer. That's a good idea but go to breast 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 the drawing board and what we're going to call this

now. So SAS came to mind and I had to work out how we're going to form words to fit SAS because I

wanted to empower ladies and make them feel better about themselves. So swimming after surgery came

to mind and I was saying brackets SAS so we have a laugh with it because I'm not one that's going to be

called in to solve military problems but it's just a way of having a giggle. So we set it up so the

council initially found funding for it for six months through their contacts and then after that

I formed a committee, went to Macmillan, got a grant for it to continue it. So I got a grant for

three grand from Macmillan and then after that it was how can we sustain this. So we do fundraising

activities like making poppies or fundraising challenges of other sorts and then because I'm

involved with other groups I learned how to crochet butterflies so we make pink and yellow

butterflies because the yellow is to remind somebody that's passed and the pink is to remind

them of life to the full and that's the colour of our poppies as well. So a bright pink and bright yellow

to help keep funds going but while we're not running at the moment what we're doing for people

in treatment is we're making crochet shawls free of charge, everything's donated, we just send

them out in the post and they can put them on the shoulders and when they're cold take them off when

they're hot and it's easy because they haven't got to worry about a cardigan or a jumper, they've just

got something they can have over their legs or over their shoulders when they're cold and they get to

keep them and do what they want. And is there a way that our listeners can find out more about this?

Yeah I've got my Facebook page swimming after surgery and they can contact me there and if others

want to get involved and make them then that's fine with me so yeah happy to do what we can. Brilliant

well we'll share those links in the show notes thank you. I'm Gareth, the editor of Vita

magazine. Vita is Breast Cancer Now's magazine for anyone affected by breast cancer. It's full of

inspiring real-life stories, expert tips on coping with the effects of breast cancer and

articles on health and well-being. In our new spring issue you can read about a mother and

daughter who were both diagnosed with breast cancer 12 years apart, find out the latest in

breast cancer research, get tips on coping with fatigue, read about the benefits of getting

outdoors and much more. Subscribe to Vita Now at breastcancernow.org forward slash vita. I'm a

big swimmer myself. I had a massive surgery last year to remove my stern and bone and for me getting

back to swimming after surgery was such a huge thing to go through but it was so helpful and just

really helped my mind as well as my body. What does swimming mean to you in terms of your mental health

and your physical health too? Swimming means an awful lot to me because a lot of people are ashamed

because I'm in my wheelchair that I can't swim but I actually swim without using my legs so it helps

keep my arm movement reduces lymphoedema, it helps me be more active and when I have been

swimming I sleep so much better. Yeah I recognize that. Swimming is a great activity. Yeah

absolutely. Before we move on to talk about your work as a breast cancer voice and I'm at Mill and

Voice I just wanted to ask you about dignity because dignity is something that you've spoken

about in your work and it's a huge and important topic when we talk about hospital treatment, when

we talk about cancer, when we talk about palliative 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

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 that I don't need to know it. Dignity is respecting

people's wishes so when somebody says they want a mastectomy they should be listened to and their

reasoning should be listened to as to why they want a mastectomy without reconstruction or whatever

it is. There might well be a reason behind it, it could be family history, it could be worry, it

could be we've had enough of this please help, it could be whatever but just listen to patients what

they want. Dignity means to me that everyone regardless of age, creed, whatever should be

listened to and not judged and consultants, doctors don't know at all please listen to the

patient if the patient is worried please listen to them and check because doctors don't want to get

sued for getting it wrong a patient might know their own body better than the consultants. That

if I may give a personal recommendation that reminds me of Dr Catherine Manix the palliative

care doctors book called Listen which is all about the power of just listening to to get through so

many different things and she talks about dignity there as well so maybe we'll put that link in the

show notes as well. So moving on you are a breast cancer voice which is part of Breast Cancer Now's

initiative to get direct feedback from patients to shape the charity's work what did it why did you

feel it was important to offer your voice and your experiences? I've been part of email campaigns

for ages and anything Breast Cancer Now was sharing I was emailing my MP dealing with

campaigns online and I decided well I've got a voice I use it with Macmillan why not use it with

Breast Cancer Now and the other thing that I did in 2022 I did their 10 mile swim in July and I was moving

house at the time and I'd managed to do five miles due to five different days so I'd done a mile a day

and I knew on the weekend I was moving all my stuff at the weekend and I knew I wasn't going to be having

time to fit the swimming in with the move so on the Friday time was getting short and I thought I'm

going to struggle to get this all fitted in so I went to the pool where I swim in and I started off I did 86

lengths then 86 lengths then 86 lengths then 86 lengths and another 86 lengths so I'd done five

miles in one go I got at the pool quite proud of myself and was a little bit shaky got in my

wheelchair and flopped got changed on one of the staff said to me you okay I said I will be I said just

got to catch my breath and she went what have you done I said I've just completed my 10 mile swim and

she went you've done five miles the other day haven't you I went yeah she said does that mean

you've done all five today I wait yeah she went I'll go get you a drink at that point you need sugar and

the person who picked me up says I don't know what to say well done or stupid yeah so yeah it was one of

them but it was I was adding that I was going to do it and I raised you the 300 pound for breast cancer now

so I was glad I did it and yeah it really pushed me to get out there and keep myself fit so yeah breast

cancer now raise awareness of issues like we've been talking about today but they also need to know

that there are things that need to change my biggest thing that I want to change is health and

life insurance because when I was 22 no one expects to get cancer and you work in and you're just

starting now so you want to enjoy life you wouldn't think of getting insurance in place or I certainly

didn't I wish I had because the impact now is I'm in social care for the rest of my life because I can't

mortgage because I can't get love insurance and that's tough so if I was talking to my younger self

at 20 it'll be as soon as you start work get insurance income insurance income protection

all the other stuff get it because you never know when you come to apply for a mortgage what you're

going to need but definitely get insurance in place it might not seem important right now but

believe me with what I've gone through I wish I'd had it because I'm in social care now for the rest of

my life I can't get a mortgage and when you start out and you want to work you're aiming to get your own

home it's so difficult and I wish I had that cushion but I haven't I've got no private pension so I'm

going to be relying on state pension I'm relying on state housing and it's not the way I want to be I

don't want to be a burden society I want to do stuff and help others and I'm hoping that my story will

encourage the industries to really look at she checked herself she was doing everything right

why she penalized yeah and I really want that message to come across because that's how I feel

and have you been able to access financial support I've got DW I've got benefits like employment

support allowance and pay it and that's it and like a housing benefit but it's not what I wanted I it's

not not the way I wanted this I'm at mill and do grants to help people who've changed shape gained

weight lost weight whatever and they also do other grants to help teenagers get a laptop when they

want to stay in touch with their friends but it's it's tough yeah I understand that you've also had a

really humiliating experience in in when you were trying to claim the pip benefit is that right no

that was when I was on incapacity benefit I got told to go to the job centre the day before my mastectomy

in 2007 and I said to DWP at the time I said I've got mastectomy on Wednesday but you want me to send the

job centre and they were if you don't your benefits will be stopped immediately so I turned up a job

centre the day before my hospital consent letter passed it tentatively over the counter to the lady

who was seeing me tried to keep my composure which is not easy when you're fretting about a

forthcoming major operation and she saw the state I was in and went is somebody with you I said yes so

she got the person with me to come over and I had a drink of water and she said take her home she's

genuine we won't be pestering her and then in November 2007 months after I'd had the mastectomy

I got called into medical services as to why I was on incapacity benefit and I turned up I'd got

bronchitis my GP had told me to not go and they said if you don't turn up your benefits are going to be

stopped immediately this is their favourite phrase so turned up and this assessor said I want

you to bend down touch your toes and at that point I couldn't do it and we didn't know what the problem

was and I just said I've got a lump on my spine which doesn't allow me to do that and she said where's

your lump and I wish I'd never told her because I told her where it was she didn't just press on it

once she didn't just press on it twice she pressed on it three times and each time made me scream

horrendously and then she said you're not cooperating with what I'm getting you to do I need

you to show me your mastectomy to go I've proof you've had one I went what and she said if you don't

your benefits going to be stopped immediately and I was part of a Macmillan campaign online in 2021

with the DWP asking why they do this and the patients who were also there were saying this

happened to me this happened to me this happened to me and some of them are recently is three weeks

prior to that meeting and it was like I thought all this had stopped I complained on this in 2007 to get

this stopped I wrote to the DWP I wrote to my MP why is this not stopping this is barbaric and the DWP are

wasting so much money on these assessors when all they've got to do is look at the hospital records of

that patient but they're not doing that they're still getting these assessors to come out and even

when I switched over from disability living allowance to PIP they sent her home assessor out to

me a lone male to a lone vulnerable female goodness sake luckily I had a carer who was able to open the

door to them and said if I wasn't here she wouldn't be seeing you and assessor said what do you mean

well a lone female usually common sense safeguarding but it was like what do I do so he came

in I was I was lying in bed because it was really bad day I couldn't get out of bed and he said what's your

conditions I started listening he said by the time he got an hour I said here's all my medical records

passing to him he went I haven't got time to read all that lot I said well that lot proves that I've got

all this anyway we have to talk to you and listen to you that's it he said we do not take any record any

records away we don't notice anything I just don't get it I don't understand why health

professionals letters aren't accepted it would save an awful lot of money with the DWP it would just

mean it was so much easier for genuine claimants yeah absolutely yeah I can't imagine how how all

that made you feel as well you know you're obviously still incredibly frustrated by it I am

but as I say it's just a matter of common sense if somebody's got the medical record folders with

every letter that they've ever had every diagnosis they've ever had that should be

accepted in my opinion yeah and that should just be taken electronically or when you've you

obviously get us to supply it they they surely don't need to come around to your house to do that

when they've got the documents but they do yeah I mean it's wonderful that you are using all these

negative experiences and turning them into positive experiences and talking and sharing

your voice and your experiences so that you can help others and that's what you're doing with this

podcast today which is fantastic as well as working with breast cancer now you're also

involved with Macmillan on a domestic abuse initiative could you tell me about that yeah

unfortunately because I have had cancer I've also been the victim of domestic abuse and it's subtle

one the way they can pick it up now is if you're late for appointments on a regular basis and you're

going for x-ray or going to a scan the radiographers are now trained to ask is

everything all right we've noticed you've been late for a few appointments or you seem a bit

stressed what's wrong and because you're in radiography on your own because that's the

natural segregation it's a great way of being able to open up and say exactly how you're feeling and

some people might say I'm okay but after three or four sessions that go into for a scan or whatever

they actually feel actually we can get on with this person who's scanning us or seeing us and they

might open up and go actually everything's not all right I'm worried that I haven't got enough money

in my bank account and yet I know I had money in there or the person who's bringing me to hospital is

always making me late it's like they don't want to bother or it could be actually I'm being beaten

back and below and I really need help but on average it takes 27 attempts to leave a domestic abuse

situation so you cannot judge you cannot say to somebody we'll get the police we'll get you into a

refuge that might not work for everybody just let them do it in their own time and in their own space I

was unique in that I booted the perpetrator out in retaliation they took my motability car they took

all my mobility aids they'd gone around the back of the house removed my wheelchair got my blue badge

and basically were trying to jail me I reported my motability car stolen got permission from the

police to get it back and on the Sunday morning after I got it back I got a message to ring 101 and

while I was on the phone a police car with blue lights turned up two police officers got out were

running up my path and just at that point we'd established the motability car was mine they ran

down away from the door and got back in the car and drove off they were there to arrest me for stealing

my own car back I'm so sorry for this entire horrific experience that you've been through and

again all I can say is thank you for turning it around and finding ways to talk about it and help

others because that initiative of healthcare professionals being there to subtly check and ask

and get you on your own to ask you whether you're okay whether everything's okay at home I've

actually seen those posters in my own hospital in the ladies toilets saying if you're experiencing

any kind of domestic abuse or coercive control at home. The other thing is domestic abuse doesn't

just happen to females it happens to males too so we're also educating the professionals to listen

to them as well yeah because it can be the patient is the abuse in the carer or vice versa and these

things really have to be considered it's not a one-way straight. Absolutely and I think you know

we're here on the breast cancer now podcast and we've covered so many different topics today and

there's no way we can cover them all in the depth that they deserve but I think just one thing from my

perspective is that you know when you are in the healthcare setting you've got a breast cancer

diagnosis you do have access to medical professionals and whilst they may not be the

experts in mental health or in domestic abuse issues if there is someone in the hospital who you

trust and who you feel you can confide in then you can talk to someone and say you know I'm having

these issues at home and hopefully in most cases they'll be able to point you in the right direction

and give you the support that you need in some way so thank you for telling us about the work that you've

been doing with Macmillan. If people would like more resources to help with disabilities in

breast cancer care is there anything that you could recommend? Just look around and see what's

available and if there isn't something that they really need let Breast Cancer know because they

can contact people like myself, got experience of it and we could go well this might be useful that

might be useful but it's also when the hospitals are building new sites be aware that x-ray

departments aren't set up for people in wheelchairs even though that's where people go

with broken legs they end up in the corridor because they're waiting outside in the in the

corridor in the wheelchairs because there isn't room in the waiting room for them and it's

hilarious it shouldn't be like that but that's the reality of it. There is a question that we ask

everyone on this podcast and that is if you could change one thing in terms of breast cancer

diagnosis treatment and beyond in the coming years what would it be? Listen to the patients and

for those that want mastectomies that do not want reconstruction please please please listen to

them and listen to their reasons as to why do not force us to go through the three months counseling

to prove we're a sound mind to make that decision that's degrading we don't want mental abuse like

that we need to be supported and that is just my one wish. Fiona thank you so much you've shared so many

of your very personal stories here and I think the message that we've got from this is that you know

you're sharing your stories in order to help others and on so many different so many different

areas and I'm so so grateful for you and I'm sure there's a lot of people that will feel supported

and feel helped and feel seen by some of the things you've said today so thank you so much for joining

us on the breast cancer now podcast. Thank you I hope it is useful and if you're not sure of

something please speak up please ask for whatever you want because if you don't ask the question you

never know what what that could thank you Fiona. If you enjoyed this episode of the breast cancer now

podcast make sure to subscribe on apple podcasts spotify or wherever you get your podcasts please

also leave us a rating or review on apple podcasts and perhaps recommend it to someone you think

would find it helpful the more people we can reach the more we can get breast cancer now's vital

resources to those who need them you can find support and information on our website

breastcancernow.org and you can follow breast cancer now on social media at breastcancernow.

All the links mentioned in this episode are listed in the show notes in your podcast app. Thank you for

listening to the breast cancer now podcast.