Giving hope to those affected
by secondary breast cancer
Research. Support. Education.
Giving hope to those affected
by secondary breast cancer
Date of diagnosis?
Late July 2021
Current treatment line?
Phesgo, Letrozole, Denosumab, Prostap
How does secondary breast cancer affect your life?
I tire easily, which is incredibly frustrating. Exercise is a double-edged sword in that I need to keep moving so I don't get painfully stiff joints and muscles, but it also makes me really tired and so robs me of quality of life. But I persevere because I know there are more benefits than not.
Emotionally, it has been a struggle to accept my life with all of its limitations. I try to live as normally as possible because I refuse to let cancer rob me of hope and enjoyment. It's been hugely difficult to see the effect of my diagnosis, which was straight to stage 4 and incurable - on my family, especially my husband. It's his future that's being threatened as well and it breaks my heart.
On the positive side, I have developed an appreciation for the little things that I previously overlooked. I am more present in my life and have a better overall balance as I have been forced to slow down. I don't put enjoyable things off as I know that opportunity may not come around again. I have also made new friends and connected with old ones in a way I wouldn't have done prior to my diagnosis. There are lots of silver linings and I actively look for them.
What advice would you give to someone newly diagnosed?
I would tell someone newly diagnosed not to panic, that this not the beginning of the end. There are lots of reasons to be hopeful as treatments are developing all the time. However, it is important to be realistic and take ownership of your care. I picture myself as a bit of a project manager with overall responsibility for my health. My team is my oncologist for cancer stuff, BCN for things related to treatment, hospice for emotional support and pain relief if/when I need it, an understanding and proactive GP who listens to me and agrees that I need to be treated as someone living with a long-term condition rather than someone dying from cancer, and friends and family I can rely on for emotional support, practical support, distraction, etc. By accepting that the individuals in the NHS are incredible but the machine itself is clunky and out-dated, I have saved myself a lot of delays and frustration!
Has your treatment line changed since you completed SBC & Me last year?
No
How many changes to treatment have you had?
I had six cycles of Docetaxol when diagnosed and started letrozole after that. I have also swapped from Zoladex to 12-weekly Prostap as I found my moods got really low on Zoladex. I am now waiting for an oophorectomy.
Phesgo has caused issues with my heart function and I am on medication for that.
How are you coping?
I find the physical limitations, fatigue and effects of menopause difficult but persevere. Emotionally, I am ok, but a lot of that depends on how my husband and kids are doing. If they are ok, then I am ok. I suspect I live with a constant low hum of stress. Cancer is never far from my mind either because I am planning appointments, because physical limitations remind me of it, or because I belong to a community of MBC people and conversation naturally swings towards treatment or advice from time to time. I accept that it's part of my life but I refuse to let it rule my life. I accept that I live with cancer but not that it should define me or everything I do.
Do the side effects affect your life daily? If yes, please explain
Fatigue! It's not feeling tired, it's so debilitating. There are times when I hit a wall and just have to sleep. Then there are times when I am exhausted but can't sleep due to fluctuating temperatures (thanks menopause!), aching joints, or random insomnia. I have to listen to a podcast when I go to sleep otherwise my brain doesn't switch off. I have had to reduce my hours at work because I am so tired. I can be really forgetful and that's incredibly frustrating.
Have you found a routine that works for your everyday life? If yes, please explain
I still work mostly full time and I have a school-aged child, so I don't have the luxury of slipping out of a routine. I am grateful for it, though. I typically get up at around 5-6am and either do some freelance work, a bit of housework, or some exercise (walking, yoga or swimming outdoors). I try to do 3-5 things that are good for my body or my mind before I start my day-to-day job. This can include taking time to make a healthy breakfast and prepare lunch, drinking my tea in the morning sunshine, going for a swim or a walk, having a cold shower, etc. I try to include lots of things that will help boost my immune system.
Do you feel anything is missed when it comes to living with secondary breast cancer? Medically or Socially
There is no real holistic approach to living with MBC. It is a different condition to Stage 1, 2 or 3 cancer. It is possible to live well for many years with MBC but the NHS doesn't recognise that - the fact that they don't officially know how many of us there are is testament to that. The NHS sees us as a group of people dying from an incurable illness rather than people living with it. Help exists but it's fragmented and takes a lot of leg work to pull it all together.
Have you treated yourself to anything since your diagnosis? If yes, please explain
Yes! Things I've often thought that would be nice and have now become a reality. Everything from a holiday to Rome to a pottery workshop. I also treat myself to the ability to give less ducks, and my life is richer for it.
Has it changed your perspective on life? If yes, please explain
Yes. I live better now because I appreciate how fleeting life is. 31 people die every day from MBC which means I have already known dozens of incredible women who have died. I recognise that life is a privilege and I embrace it much more than I can. I don't feel obligated to live a good life but I know that if I am getting annoyed over something like my son leaving plates and glasses in his bedroom, that they would give anything to be telling their teenagers off for mouldy cups, so I appreciate that I am fortunate enough to be able to do it. The little things don't bother me anymore and I am a lot less stressed than I used to be. Conversely, I tolerate a lot less crap - life is too short! My connections with people seem to be more positive and meaningful because I literally can't be talking with someone and having other "tabs" open in my head as I did before. I have to concentrate on what or who is in front of me or I forget everything!
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