Giving hope to those affected
by secondary breast cancer
Research. Support. Education.
Giving hope to those affected
by secondary breast cancer
Hi, my name is Deb, I'm 52 and live in Merseyside with my husband Neil. Neil has three adult children from his first marriage and we now have a six-month old grand-daughter. I am now retired (on ill health) but previously I was an ESOL (English to Speakers of Other Languages) Tutor and I am the Founder of a social enterprise called Café Laziz which was set up to help asylum seekers and refugees to integrate and to provide them with training and work experience running a community café.
I was diagnosed in December 2021 with ER+ (so three years and three months currently) and I am still on my first line of treatment (Abemaciclib, Letrozole, Denusomb, Zolodex, Zomorph, Amitryptaline, Adcal)
Can you share a little about your experience living with secondary breast cancer and what has helped you along the way?
Living with SBC has changed my life in so many ways. Prior to my diagnosis I had always been so busy and ambitious. I am slowly learning that I can no longer operate in the way I did pre-diagnosis. I undertake life coaching sessions which are great in helping me to see things more clearly and look at the way I do things and why. I have never had/taken the time to think about these things previously. Everything just “was”. Since being diagnosed I do feel that I have been carried along the whole pathway by an amazing group of friends and family. It felt like all these strong arms just scooped me up and eased me along the road with as few bumps as possible.
What moments, big or small, have brought you hope and strength?
I have never asked for a prognosis, but I remember reading the “average of 3 years” in a booklet which really scared me. I remember throwing the book away and saying, “well I’m not $£%&^%@ average”. At a local cancer group I met a lady who was stable and still on her first line treatment at 15 years! This was all I needed to hear at that time and it brought me massive hope that actually, it can be done. From the day of my diagnosis I have generally felt strong about it all, and have dealt with it quite optimistically really. I remember calling all my friends and telling them personally.
The hardest part was telling my mum and dad as I knew they just wouldn’t cope as I am their main carer and we are extremely close. I needed to be strong for them and this has helped them to be strong for me. The way they have managed to deal with it brings me relief and peace. I knew my husband would be “okay” as he is very laid back and deals with things really well. He has also brought me a lot of strength as we deal with most things with humour. He is a very emotionally strong man who isn’t afraid of showing his feelings and so we can have a good cry together, get it all out, and then have a laugh and a joke wherever possible to help us move forward. We don’t pretend that everything is fantastic and sometimes we do say that it’s just S%!£ but we know we have to move on and make the most of the hand we have been dealt.
What advice would you give to someone newly diagnosed?
It is really really difficult at the start. Your world has been turned upside down. You need to
give yourself the time and space to deal with this. Don’t bottle things up and don’t pretend it isn’t happening. I remember having to tell myself numerous times a day that I had stage 4/incurable cancer as I wasn’t sure it had sunk in and I was petrified of forgetting and then having to go through the diagnosis shock again. I kept replaying the conversation with the doctor in my head, over and over. But I slowly came to terms with it and made plans for my new way of life. I took six months off work before I decided to take ill-health retirement. I tried to view this whole thing as just the next challenge in my life that I would learn to deal with. And I have. And you will too. Things will feel better when you know what your treatment plan is and you get into a routine. Stay off Google, only read science backed articles, learn how to look after your whole holistic self to give your body and mind the best chance. Join as many local and national support groups as you can manage. Face to face groups are wonderful for meeting other people in very similar positions, who have probably been where you are now. Join online groups, but scroll past any negative or worrying posts until you are ready to face and deal with them. Look for the positive stories as these will give you hope of a future you can’t even imagine right now. And go on as many cancer specific retreats as you can, as soon as you can.
Have you noticed positive changes in treatment, support, or awareness since your diagnosis?
Definitely, there are so many new treatments being researched and trialled which I find really positive. There are lots of support groups, and if you can’t find one local to you, you could always set up your own tea and chat with the full support of Make 2nds Count. There are lots of books about SBC and I have recently read the new one by Dr Liz O’Riordan called The Cancer Roadmap – I think this is a really informative book for anybody who is newly diagnosed.
Have there been any medical advancements, clinical trials, or personal experiences that have given you hope?
I love the Clinical Trials team at Make 2nds Count as although I am not ready for or not needing a trial just yet, I have had an appointment with one of the nurses/team and it has really put my mind at rest as to the hope I have of being able to access a trial further down the line. I was particularly surprised and pleased at the amount of trials that are out there.
What has made the biggest difference in your quality of life while living with SBC?
I am no longer able to work, but I am able to access my full pension on ill-health. This has
enabled me to make some wonderful memories with my family and friends, and has meant
that I live every day to the best of my ability on each given day. It could be argued that my quality of life has deteriorated because I am no longer able to physically do some of the things I used to do – and I did really enjoy my job. However, I look on it that I have been given a new and renewed passion for living every single day as best I can. Since my diagnosis I have been on 4 cruises, bought a campervan, bought a static caravan and bought a puppy– these were just a dream for the future before! I no longer allow any unnecessary stress into my life and have learned to implement boundaries to protect my own peace of mind and quality of life.
What brings you joy and purpose in your daily life?
Pretty much everything! I love spending time with my family, friends and my gorgeous dog
who is just a bundle of unconditional love. I make sure we look after ourselves by eating nutritious meals and taking time to ourselves when needed. I do gentle stretching/yoga exercises as often as possible as these do help me to avoid being so stiff and inflexible, an unfortunate side effect of the illness and the treatment. I have had a little bit of doubt recently about my whole sense of purpose – I think this is only natural when you are used to being as busy as I was and having such fulfilling jobs. However, I have accepted the fact that my whole sense of purpose is to stay alive and that means learning how to look after myself as a priority for the first time in my life. My other sense of purpose comes from helping others who find themselves in a similar position to me.
I volunteer for a few different cancer charities and find this helps me and those who attend
them. I am currently setting up a podcast to discuss how we can live our best lives and encourage others to do so without an incurable diagnosis or life changing incident.
What gives you hope for the future?
The fact that there are people out there who are living well beyond the outdated statistics. I have got another amazing cruise booked for the end of this year and have lots of little
campervan and caravan trips booked in. I am also hoping my new podcast will bring a little bit of joy to anyone who listens to it. I am also in the process of setting up a group, with other ladies local to me, to remember a friend we recently lost to (a different) cancer. This brings me hope that in her name we can bring comfort and an enjoyment of reading to others.
What would you like others—whether researchers, policymakers, or the general public—to understand about living with secondary breast cancer?
It’s not easy living with an incurable disease. We have to live on three monthly scans to make sure that we are still okay. The anxiety of waiting for these results is horrific. The face we show to our family and friends is not the one we have in private. For every busy day we
have, we need at least a full day to recover. This is all done in private so that we don’t worry those who care about us. We try not to show the dark side of this as we don’t want to worry others and we don’t want to scare those who are newly diagnosed as we do have good days and they are the ones that count. The biggest annoyance I have is the fact that we aren’t counted until we die. If the treatment centres/hospitals don’t know how many of us are living with this disease, how can they possibly budget for us?
What support or changes would make the biggest difference for people living with secondary breast cancer in the future?
That policymakers take us seriously and treat us the way they would if it was their family
members in this position. We deserve to be counted, we shouldn’t have to fight for
treatment lines, treatment should not be a postcode lottery and we deserve a good quality of life whilst we are living with an incurable illness. We are living rather than dying……and we should all be able to thrive rather than survive.
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