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 going to be talking to Claire O'Donnell from Make, 2nds Count, a UK-based

charity that gives hope to people living with secondary breast cancer. This is something

Claire has direct experience of, as she, like me, is living with secondary breast cancer. We're

talking to Claire today because Breast Cancer Now has actually teamed up with Make, 2nds Count on

their clinical trials information service, which is part of their mission to facilitate

access to patient trials. Claire will be sharing various aspects of this really important area of

breast cancer treatment. We'll also be talking about the work that Make, 2nds Count is doing to

fund breast cancer research, to support patients and to raise awareness and understanding of

secondary breast cancer. Claire, welcome to the Breast Cancer Now podcast. Thank you for having

me. Could you tell us, first of all, about your diagnosis and your experience of secondary

breast cancer, please? Of course. I was diagnosed with primary breast cancer in October 2015 and so

went through treatment as you do, so had mastectomy, radiotherapy, and then had a scan at

the end of that, hoping to be given the all-clear, but there was discovered, there was some lesions

showing on the scan and it was confirmed in March of 2016 that I had bone so I have mettes to my sternum,

my ribs and my lower back and so yeah that was 2016, seems a long time ago but yeah, so I've been living

with secondary breast cancer since that point. And it's not the first time we've talked about

secondary breast cancer on this podcast but for anyone who is perhaps coming to it for the first

time, could you just tell us what secondary breast cancer means? Of course, secondary breast cancer

is when the initial tumor has spread from the breast and traveled to another part of the body,

another organ, therefore becoming incurable, so it's treatable but it becomes an incurable at that

stage, so it's when the initial tumor has spread to another part of the body. And I know that's, this

whole incurable but treatable is quite hard for a lot of people to get their heads around,

understandably, because it's quite confusing. Is there anything you can elaborate on in terms of

that to help us to understand? I mean, I guess looking at it from my own perspective and my own

experience, it's basically getting your head around the fact that there isn't almost, you have

to take the cure part of it away from, you know, your primary diagnosis should always aiming for that

all clear, you know, and moving on with your life I guess but the incurable aspect becomes, I guess,

your mindset changes and you have to learn to live with cancer, you have to learn to have that be part

of your life every day based on your treatments or your side effects or symptoms. So I guess it

becomes just a whole new way of having to live your life. You can treat it and you can live well, I

certainly have experience of that at the moment but that doesn't mean it's not a difficult thing to

live with. I struggle more mentally with the daily struggles of living with secondary breast cancer

and, you know, while my cancer is stable and asleep as they say, I do have a million side effects that

comes with that so really I'm battling that more than anything at the moment. So yeah, I think it's

just for me it's just having to adapt to a new way of thinking and living and trying to remain as upbeat

as possible while doing that. Yeah, that's a really good way of explaining it so essentially

you will never not have cancer, it doesn't necessarily mean that you'll be suffering from

the actual effect of cancer but exactly there's a lot of days where the cancer actually doesn't

affect me, it might be more a side effect or a pain or a niggle but I'm still living with cancer and it's

not going to go anywhere so it's about keeping it at bay, I guess, it's about keeping it asleep and

being able to maintain that level of treatment, I guess. Could we all know at some point things will

change so you aim to have as long as possible on whatever treatment you happen to be on but for me it

was a real mind flip and it took me a long time to get my head around it and I'm in a much better place now

but the first couple of years of my diagnosis was very up and down and I'm happy now that I live quite a

happy life and you know I live well with it but it wasn't always like that, I think it takes time and I

think it takes experience of what secondary breast cancer actually is. Absolutely, so tell us

so what treatment are you on? Have you been on the same treatment for the whole time because it's

been quite a few years now? Yeah, it's been quite a few years, I'm very lucky and that I've been stable

now for seven years and I'm still on first line treatment so I feel incredibly lucky and my wonder

drug as I like to call it is letrasol and that's all I'm on, I do have a bone strengthener that I take

daily and I used to take azolodex injection to shut down my ovaries but I've since had an opherectomy

procedure to remove my ovaries to take that part of that treatment away so yeah, letrasol and a bone

strengthener is keeping me going at the moment and I'm doing really really well on it so I can't

complain. That's fantastic news and you mentioned first line treatment can you just

explain that term as well because all of these things were new to me like just a year ago so I know a

lot of people won't be familiar. Absolutely, it was new to me at the time as well so I basically say

first line treatment because it's the first treatment I've had for secondary breast cancer

and it has remained so I haven't had a progression, I haven't had a change in my circumstances so if I

did get to that point and they would change my treatment that would then become my second line so

it's looked at as each drug that you have whether it be your first or second or your third is how so I'm

like I say I'm incredibly lucky to still be on first line treatment eight years on I know that's not the

case for everyone so yeah I feel very lucky indeed. Yeah we've got to be incredibly grateful and

thankful to the people who research and make these drugs. Absolutely, without that we're not going

to get anywhere are we? Yeah so tell us about make seconds count why was the charity set up and what is

its mission? So the charity was founded by Lisa Fleming who was a secondary breast cancer patient

and at the time Lisa felt there wasn't really anything out there for the secondary breast

cancer community she was struggling to find support and help and she wanted to set up a charity

that would help with that so make seconds count as I think we're coming up to our fifth birthday soon

which is incredible we've done so much since then what we do is we focus on three pillars which is

research support and education and our aim is to be I guess a place that you can come to for any queries

that you may have about secondary breast cancer whether it's wanting to understand it as a newly

diagnosed person or if you're further down the line like myself and maybe things are changing and

you want you want the best advice or the right place to go that's what makes seconds count aims to do and

one of the big things we do is fund research into secondary breast cancer so and the things that we

tend to focus on are what you would I guess what they say is near time so it's things that's not

necessarily going to be 10 or 15 years down the line but it might be something that would support the

community in the here and now so whether that be a well-being thing or you know a drug or it might look

into sleep or it's funding those types of research that will help you live well with secondary breast

cancer which is a huge part of what makes seconds count is about where they are to provide hope for

not only the secondary breast cancer patient but their friends and family and so the three pillars

that we work on aim to do that via educating them about secondary breast cancer not only the

patient but maybe the general public the wider public who maybe don't understand so I guess

there's different sides different tales that you can tell different stories you can tell and

support which is the side that I'm mainly focused on with make seconds count is providing support

daily in the here and now whether that be through online services or in person groups and

activities retreats well-being we do yoga and mindfulness and breath work so yeah we try and

cover as many aspects of life with secondary breast cancer as possible and the hope that it's

making it easier for the community to live with secondary breast cancer and what does your role

involve well I am support and patient engagement manager I was the support coordinator for the

charity and I actually started out as a volunteer and I was a patient champion when I found make

seconds count I myself was looking for community and help and found them so my role has been to

establish the support services because we didn't really have anything then COVID hit and we found

that a lot of our community were incredibly isolated and so that's where our first support

service was born which is tea and chat which was basically an online program where you could join

us for an hour and chat it could be about cancer it could be about life anything and everything and

that's still going strong to this day but we've introduced now in person setups for all around the

UK and so my current role is to try and establish those that are here and find new places to set up

these groups and a big part of my job is setting up the retreats which is a couple of days away for

members of the community to just make friends to meet other people in the same situation in a safe

space and provide them with some lovely food some lovely you know accommodation some mindfulness

some yoga just really give them a place to go and experience um what it's like to meet other people

in a similar situation and we found that that retreat service I'm not sure there's many other

people offering that so make seconds count I've tried really hard to grow that um the plan next year

I think is actually to have six so this year we did four so we're always aiming to you know improve

what we've currently offer and actually allow more people to to find and take part in these

services so yeah how can patients access that and they can access it via our website we basically and

normally around January time we'll announce what all the activities are going to be and where

they're going to be and you can sign up for all of them if you wish or if there's only one that you're

interested in you can sign up and then what we do is we do it's a random draw um so it's open to everyone

but we we do firmly believe in it being fully funded so that you know you're not held back from so we will

provide travel expenses and we'll pay fully for the retreat so they're not out of pocket hopefully

so um so yeah that's fantastic yeah thank you we're very very proud of it yeah everything will be on the

support section of the website um at the start of the year so um what I would suggest is if people are

interested is to maybe sign up to our newsletter um which you can do so from the homepage of our website

because that will ultimately be what lets them know that you know the retreats are live and ready

to sign up for so they're always very much oversubscribed um so we try very hard to bring as

many people as possible so it will always be someone who's never experienced a retreat before

that'll take priority you can apply again if you wish but it would always be a last minute place if

you know someone pulls out for whatever reason so it's not like you can't experience it twice it's

just we always offer it to someone who's never never been on one first so each year we're always

trying to add more to it so yeah takes a lot of time though and a lot of work well we'll put the links in

the show next so that any listeners can have a look at that you mentioned that your mindset from the

first two years of your secondary breast cancer diagnosis to now sort of eight years on was really

really different was there an active thing that you did um and how did it change I I've thought about

this a lot actually I think just recently because um a few members of the community have asked me a bit

about it was more just I think there needs to be that level of stability that comes from your scans

because I think you're not really going to trust that mindset without that um so I think in the first

couple of years I was very much like a rabbit caught in headlights and I'd obviously aimed for being

all clear and moving on and that sort of ripped away from me almost straight away and you have to get

used to this whole other way of thinking and I'd lost my mum to secondary breast cancer as well back

in the 90s so I obviously had that fear that instantly became oh this is my life this is what's

going to happen to me and I couldn't shift that um and I think what happened was a finding makes

seconds count um getting really involved in their volunteer program um spending a lot of time with

other members of the community and I think just learning to share and not be afraid if I was there

were times when I was really really very very scared that you know I wasn't going to see my niece

and nephew grow up they were very young at the time and I think there's just a lot of things that come

into your brain that you feel that you've got no control over um and over time what I've managed to

do is take a bit of that control back but in all honesty I'm not sure where I would be had I not had

stable scans to back that up I think that's a really important part of it is because in order to trust

your treatment and trust what's happening I think you need to scan to back it up and only then do you

maybe start to let go a little bit and not feel so tense about absolutely everything and I've

obviously had the luxury of five six seven years of not many changes not many ups and downs whereas

other people I know are constantly having to change how they think so I guess it's come easier to

me um but then working within makes seconds count and with the community I've seen what other people

go through as well so I guess it's a bit of both but yeah I think it's just trusting that you know you

are stable your treatment's working yeah and that just allowed me a little bit of freedom I guess to to

think about the future again and obviously now further down the line I've saw my niece and nephew

grow up which is what I didn't think would happen and I've also realized that the treatment that was

available to my mum in the 90s it's night and day what's available now and so there's obviously

that as well and knowing that there's a lot of other treatments out there as well helps I think um

certainly for me I know there's a a list of things that I can move on to so it's not necessarily going

to be the end of the world if I do have a progression it will take so I think it's lots of things that get

you there but those I would say would be the main things for me yeah absolutely um you obviously

came to make seconds count in the first place when you're in this really vulnerable position having

been diagnosed and now you're a little bit better you're doing well you're stable but you're

spending a lot of time working with and living with secondary breast cancer do you need to escape that

sometimes and if so what are your coping strategies? Sometimes yes I will be the first to

admit that sometimes I'm not very good at doing that either because I get very involved um I feel um

a lot of you know responsibility to the community that we've built and that we look after so and it has

for a long time been just me doing that side of it I guess for the charity obviously with support from

other team members but it's really just been me that's been kind of interacting with them so there

are moments there are ladies that I've lost in the community that I've got very close to and I've had

to step back and I've had to step away and take a moment a to to grieve for them I guess but also to

make sure that I'm still in a good place because I can't support them if I'm not in a good place so um

I'm very lucky that make seconds count are incredibly we've got a really good team who look

after each other um and they're also aware that I'm a patient so that they're they're very good at

making sure that I'm maybe not doing too much or if they need to tell me to step back a bit because like I

say I'm not always the best at doing that because I like distraction I like things to keep my mind

occupied and I find that I've got a real passion for the community and for make seconds count so

sometimes it does overtake but yeah you always have to make sure that you're all right first and

foremost and I do struggle when I lose ladies from the community um it's hard it happens a lot sadly um

but I think you just have to try and ground yourself again and know that everybody's story's

different as well and that just because that's happened to them that's not what's happening to me

and I guess you have to remember that it's very easy to get lost in the you know the sadness and the the

overwhelming responsibility you have to the community that you're also trying to pick up at the

same time because they'll have also lost someone that they've got close to um so yeah I think it's a

real balancing act sometimes I'm all right at other times I'm not I'm quite happy to admit that

I'm not always the best at it but I do try really hard to look after myself as well it's a fine balance

because someone else who doesn't have secondary breast cancer could do your job yes but they

wouldn't do it with the same level of understanding and they wouldn't have that same

connection I think exactly that I think there's a level of understanding about what it's like to

live with it there's an empathy there for I may not know what your experience is necessarily with

your drugs but I understand what it's like to live with it and to to have to constantly be on that

roller coaster as such so I think in that regard it's it's beneficial to have someone that

understands and I think the community trusts that and they trust the charity for those reasons

because they've got people who understand you know working within the charity and I think that

goes a long way. I'm Gareth the editor of Vita magazine Vita is breast cancer nurse 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 can you tell us a bit about the partnership between breast

cancer now and make seconds count and how the two charities are working together yeah of course um

our patient trial advocate service started in 2021 um after some feedback we'd had from a survey

that would put out to community about things that they felt were missing or that they needed and what

came from that was There really isn't a lot of access to clinical trials and there isn't a lot out

there for those living with secondary breast cancer who are maybe at a point where they want to

know what else is available to them or something that will give them hope. So the PTA service

started, launched in 2021, and it started off as a pilot in Scotland, in a very small area of Scotland

that we used to put. It was very, very successful very quickly. There was a lot of referrals and it

became very clear very quickly that we were getting a lot of referrals from people out with

that pilot area because there isn't really the service anywhere else that's unique to Make, 2nds

Count. And it was a way for us with the education pillar as well as the other stuff is to educate

people about clinical trials and maybe to dispense some of the myths that there is around

clinical trials. And Breast Cancer Now have been incredibly supportive of the Patient, Trials

Advocate Service and that they've been very much signposting our service to their nurses and

making everyone aware of the service and referring patients to it because they're also

very aware of how important clinical trials are to the Second Breast Cancer Community. And one

amazing thing that they've done is that they granted us a £20,000 grant to go towards the

Patient, Trials Advocate Service to help us continue it, to hopefully put that towards maybe

introducing more nurses. We currently have three who work all over the UK. So this money will help us

continue the service, hopefully expand it and continue to offer people an insight into what

clinical trials are and our nurses effectively sit you down and talk to you and talk through your

questions obviously. If you've got any questions they'll answer those. But even if it's just simply

a phone call that you want to understand a bit more about clinical trials, there's no obligation to

take it any further. But if you want to, the point is that they'll go away and do all the research for

you, which I know I would find incredibly confusing if I had to try and understand those

databases, I wouldn't be able to do it. So the nurses are very good at that. They'll go away and

they'll research it all and then they'll send you all your information back and they'll also notify

your oncologist that with their permission obviously that you're interested in clinical

trials and want to know more about it. So I guess a lot of it's about empowering the patient, but it's

also I guess making clinical trials themselves more accessible. Because I was very confused

about clinical trials and didn't really know a lot about them and I've found out more through just a

service loan and working with the fabulous nurses that we've got. So yeah breast cancer now, I think

we're really keen to work with other organisations and charities who are passionate

about the secondary breast cancer community and services like this which are going to help. And

breast cancer now have been incredibly supportive. Our nurses have gone and spoken to

breast cancer now groups of patients as well to explain the process and the service. So it

obviously gives us access to more patients who are maybe not directly members of the M2C community

but you know maybe they don't know who makes seconds count at this point but breast cancer now

are allowing them to come to our service I guess which is fantastic. And is that anywhere in the UK?

It is and I think for some people there's maybe been a bit of confusion and that they maybe think that

we're a Scottish charity only, but we support UK wide and a lot of our services are UK wide. So the PTA

is accessible for anyone in the UK, our support services are accessible for anyone in the UK. In

fact we have quite a lot of groups that are now out with the UK so I think it's really just quite

important for us to let the community know that you know it's not Scotland only. Where yeah UK wide for

sure. Fantastic thank you. So what is a clinical trial if you could sort of because I think we all

have an idea in our heads of what it means but I don't really know much about what it is, what it does. And

I would have to say I kind of agree I'm not an expert and by any means I know a clinical trial is there to

hopefully establish another line of treatment and it's about I guess you need patients to be part

of these things to see if this drug is going to work. But like I say I'm not an expert on clinical trials

at all that's why we've got our fabulous nurses who do that. So what I would say is if you do want any

information I would make an appointment, I would book and speak to the nurses and there's no waiting

list you can simply book an appointment online through the MakeSeconds Count website and it can

be a date that you choose so it can be convenient for you and the nurse will phone you and talk to you and

explain but I guess in the simplest terms it's about without the clinical trials we're not going

to have access to new drugs so a clinical trial is all about will it find you another line of

treatment and as a secondary breast cancer community that's exactly what we need and want is

you know access to more treatment lines and I guess they can only come from a clinical trial but as I say

I'm not an expert myself I've tried really hard to learn as much as I can but our nurses are far better

at it at all that than I am. So is a clinical trial only for someone who's exhausted all of their

lines of treatment or is it something that you could ask for at the beginning of your diagnosis? I

think that's one of the myths that we as a charity have tried to dispel because actually you don't

have to wait until and in fact it's probably more in your favour to do when you've not exhausted all

your lines of treatment because at that point I guess you're going to be quite unwell and so my

advice would be if you're interested in a clinical trial ask about it as early as possible even if it's

just for the nurses to research what's currently available to you it will give you that knowledge

and you can then make your oncologist aware you know that you're interested in clinical trials

but I think that's one of the big myths that we tried to dispel at the beginning of the PTA was that it's

not purely for when you've exhausted all options you can look and see what's available to you at any

stage. I haven't done it personally because I'm stable on first line treatment but I always had it

in my head that should I have a progression that would be something that I would be interested in

doing and I would want to find out more at that stage but yeah definitely I wouldn't leave it until the

you know when you've exhausted all your lines of treatment I think it's more advantageous for you

to do that a lot earlier on in treatment. So before this service came about how would a patient access

a clinical trial is it something they would ask their oncologist about or? I would imagine that

would be the way it would have to have been yet I know there's there's databases which list all the

current clinical trials that are available in the UK I think there's about six of them but having had a

look at one of them I was I was incredibly confused by everything I didn't really understand the

language I didn't really understand any of it so I can imagine that before this service that would be

what it would be like for you if you were trying to navigate this yourself so I think the beauty of the

PTA services that they do all that for you and they can understand all that information and then

they'll report that back to you and feed that back to you in a way that you understand. One of the other

things that the charity did off the back of that was we've taken all that information from all those

databases and we've listed it as a clinical trial registry on our website and it lists it all very

clearly and it's updated every month so at any point you can really see what's available and I

think it's laid out in such a way that the language is easier to understand which I think is also

really important because we don't necessarily know all the medical jargon and I think this is

another way to just make clinical trials more accessible. And are they accessible to all

patients, private or NHS? Yes I believe so yes I think there's obviously differences in how you

would maybe access them depending on whether you're an NHS patient or a private patient but as

far as I am aware clinical trials are available to anyone and everyone who would like to access them.

Brilliant. You're very much making me want to go and learn more, go and call one of these nurses. I

know you're not an expert on clinical trials but I know that there are strict eligibility

requirements for getting on a trial and then when you're on a trial I believe you are regularly

tested and there is a chance that you may be removed from the trial if you're not hitting certain

health targets. I don't know if targets is the right word. When I realized that that was the case

it struck me that it would be something that would be mentally terrifying and exhausting and

confusing. Is there mental health support for people who are on clinical trials do you know? If

you're accessing it via makes seconds count we have other services that would hopefully be of use

as in support groups that we have online or you know the team chat service that we do which runs monthly

so I would hope there's always someone that you could speak to but yeah I know that the criteria is

often very very strict and in some cases you may not even be eligible for that trial because you don't

meet those criteria which I guess must be one of the most difficult things about clinical trials. If

you're you know if you're I guess at a point where you feel that's what you need but then if you can't

access it almost it must be so soul-destroying but yeah I would imagine that must be something that is

part and parcel of what the clinical trial is. I would hope it would offer more than just the

clinical trial itself. Yeah I don't know I suspect maybe also it's it's organizations like yours and

like breast cancer now. Well that's at breast cancer now makes seconds count I guess we're there

as backup I would like to think that you know you know that you have these services that you can

access so if you are struggling mentally with maybe what the criteria is or whether you're

struggling with something about the clinical trial I would like to think with our community

there's a lot of questions that are asked there's a lot of shared experience within our community

groups so if you're sharing that experience you're picking up those things and I would hope

that that would be helpful and I imagine breast cancer now groups would be exactly the same that if

you're sharing experiences it can only help. Yeah absolutely. What's the situation like in terms of

funding and research for secondary breast cancer patients? I think it's difficult I think it's

always hard to a lot of what we do in our fundraising is to fund research primarily that's the biggest

part of what makes seconds count does and our support services have certainly grown but the

biggest part of what we do in terms of fundraising is to fundraise for research because there isn't

that much out there and I guess it's about doing as much as we can to fund projects that are going to be

of use and of benefit. I think there's other charities out there that funds I would say maybe

long term research that may take 10 15 years to come to fruition I think for us we try really hard to find

things that are maybe going to be of benefit more you know in your time because a lot of that's really

important to those who live with secondary breast cancer and you are on a timeline I don't like to

think of it like that but for a lot of people it's quite urgent you know and you do need things to come

around a lot quicker and it's not the quickest thing you know to to have new drugs come around so

yeah certainly fund raising into research is the most important part and where does the

fundraising come from so for make seconds count it comes in a number of ways and we're very lucky in

that we have a very active community who fundraise for us by doing you know their own fundraising and

we get funding through trusts and foundations via applying for things like that so and obviously

there's a lot of corporate fundraising that you can access so I think it's just about assessing as

much as you can but we as a charity are incredibly lucky that we have a very active community who

fundraise daily for us and who get up to all sorts of antics on our behalf and a lot of them do like to say I

want this to go towards research and that's something that the charity can do if you want your

fundraising wanting to go say you don't want it to go towards anything other than research that's

exactly what would happen so yeah that's cool I don't know if everyone does that as someone with

secondary breast cancer myself I know there's a huge amount of self advocacy involved in

everything from diagnosis to treatment and becoming a part of a clinical trial requires a real

level of productivity that many patients just won't have the time or energy for what kind of

support is there out there for secondary breast cancer patients who don't necessarily have the

time or energy to you know do all the work I mean again I think that's where the patient trial

advocate service comes in is that they can take on that burden I guess if that's the right word to use

but they can be doing all the heavy lifting and the hard work and they can find what's out there for you

and then they can take that information to their oncologist because I think it's it's not wrong to

say that oncologists don't often have a lot of time either so the PTA service is helping them as well as

the patient so I think you know if I understand that you know you are going to be tired and it may be that

you don't have it in you to do that but that's where I think you should utilize these services that are

now created for that reason and the PTA nurses what's great about it is that it's not just once if

you want to go back and speak to them again you just make another appointment and you can follow up and

we've had people that come back two three times just to update you know their situation or maybe

want to check if there's anything new so I think what's good about that service itself is that it's

taking on all that hard work for you but you're still benefiting as a patient and obviously our

hope is that you would access a trial and we don't always find out that information but that

ultimately is what the service is aiming to do is to get people on to clinical trials so I think that's

where I would just say use those services that's what they're there for you can still advocate for

yourself but you can have someone else do what may be the hard stuff and you can still be very

proactive in other ways and if there's someone listening to this podcast here is perhaps a spouse

or a family member of someone with breast cancer can they get in touch with my seconds count and you

know do all that liaising on their behalf. Yes it doesn't have to be the patient themselves you can

have your friend or your family or your husband or your daughter we've actually had that a number of

times where it's been someone else and you don't need to know a lot of background information

either and there's very basic questions that we'll ask and even if you don't know the answers

it's not a deal breaker that's where the chat with the nurse comes in so I guess as long as that person

is aware that someone's making the referral and you know that there will be a conversation at some

point but yeah anyone can make the referral and that's another thing that I think is really really

useful because it may be that you're not maybe well enough to do that and so maybe your spouse will do

that for you but yeah the nurses are happy to speak to anyone and anyone can make that referral for

you. Brilliant well I'm sold I'm definitely gonna make the call myself. Absolutely I think for no

other reason and it allows you just to learn a bit more and I don't I always think knowledge is power

and the longer I've been on this secondary breast cancer I hate the word journey but the longer the

longer I've been on this journey I guess I've learned that the more you know the easier things

can be for you and I've certainly learned a lot through the nurses and through the service itself

but also from the feedback we've had we've had 100% feedback on the service positive feedback and

that no matter whether it goes as far as identifying trials for you but it may even be as

simple as explaining what a trial is and I'm sure the nurses can do that far better than I have today

but yeah absolutely I would recommend at least like I say there's no obligation to take it any

further but if you just even like to find out more you know about the service or about what's open to

you and I would definitely go ahead and make an appointment with the nurses. Where can people

find out more about Mexicans count? So our website which is www.mexicanscount .co.uk you'll find

all of our services there you'll find everything on our research support and education pillars and

within the support section is the patient trial advocate section so you can make a referral via

that booking form online but even if you just want to find out a bit more about what secondary breast

cancer is there's a whole big section on that about talking about whether it's in your bones or in your

liver or brain or you know it tries the website's really useful for just trying to gather as much

information as possible so yeah that's where I would always point people in the directional

first. And we'll put the links in the show notes but the spelling of seconds is 2nds isn't it? Yes it is.

I would like to end by asking you the one question we ask everyone on this podcast which is what is the

one thing you would like to see change in the coming years in terms of secondary breast cancer

diagnosis treatment research everything surrounding that? I mean for me I guess and this is

probably coming from a personal experience is that I would love for the doctors or the nurses or

whoever to maybe just respond when you come with a query necessarily like I had a lot of time where I

had to fight to say that you know I had this condition and they were telling me it was mastitis

for six weeks and it wasn't mastitis you know I had no kids I wasn't breastfeeding but almost I felt I

had to fight and I feel like if I hadn't had to have waited those eight weeks my own prognosis may have

been different and I think for secondary breast cancer specifically there's a lot of ladies that

go back to their GPs or go back to their team and say I've got a bad back or you know I've got a pain and

it's often they're not joining the dots and they're not going with this person had breast

cancer why don't we just investigate this and it takes a long long time but by that point it may be too

late and you may be you know further along in your secondary breast cancer journey as you would need

to be so for me I just I would like the patient to be believed a bit more when you know or at least

investigated whether that be with a scan or checking your notes and seeing that actually

they're not just coming because they've got a sore back they're coming because they're concerned

about something else so for me personally I would like that to be a bit more accessible and obviously

lots more research lots more treatment options yeah that would be wonderful absolutely well I

agree and thank you so much for all the work you're doing with Make Seconds Count it's so important to

this community thank you and Claire thank you for coming on the podcast thank you for having me and

thanks for letting me talk a little bit about what Make Seconds Count does and about our patient

trial advocate service we're incredibly proud of it so thank you for letting us share thank you if you

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cancer now on social media at breastcancernow all the links mentioned in this episode are listed in

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