Giving hope to those affected
by secondary breast cancer
Research. Support. Education.
Giving hope to those affected
by secondary breast cancer
Date of diagnosis?
March 2021
Current treatment line?
Capecitabine 3000mg, reduced to 2700mg
How does secondary breast cancer affect your life?
1. Physical side effects of chemo (and I’m told the cancer itself) - primarily FATIGUE which randomly hits, some bowel issues that can make it harder to feel confident going out and about, dry throat which makes eating some foods harder.
2. Husband’s reaction - jumped from diagnosis to loss and I can’t shift him
3. Wariness about mixing in crowded spaces because of reduced immunity
4. Lack of interest or support from GP practice leaves me feeling isolated
5. Made new friends with a shared interest
6. Friends have distanced themselves and really don’t want this in their lives. With primary bc, they flocked round me offering support.
7. Otherwise, I’m still me, same way of life, only with a summerhouse!
What advice would you give to someone newly diagnosed?
1. Don’t jump to conclusions. There has been real progress, even with MTNBC, and this should be seen as a condition to be managed so we can live well with it, it’s not a direct road to death. I’ve come across one lady who has lived with her Stage 4 diagnosis for 22 years.
2. Every emotion you feel is entirely valid and you shouldn’t even try to hide it. Never apologise for how you feel; you will level out as your perspective changes.
3. Decide early on how much information you want and make sure your oncologist knows this. Once heard, never unheard, so don’t ask questions you may not want the real answer to. Some need to know everything, some need to leave it in the hands of their team. You’ll work out what’s right for you. If you do need information, only choose the most reliable sources (not Google).
4. Trust your team but challenge them if you need to. Don’t suffer in silence. Become your own advocate if necessary, complain if necessary - and make your gratitude clear.
5. A smile achieves wonders, as does a ‘thank you’.
6. Don’t carry the burden alone. Not everyone needs to know but some people do. You need emotional support and sadly this won’t come from the hospital. Partner, family, close friends… make sure they truly understand the facts, not the myths, and then you won’t be alone, even if it’s never mentioned.
7. Accept that there will be times when you can’t be what others expect of you. If you are down or hit by fatigue, ask for support, don’t paste on a smile and pretend everything is ok. You’ll get resentful.
8. Be practical - get your affairs in order (it’s common sense, not morbid) - then live life to the full and spend all those savings on yourself and your loved ones! There is still joy to be found everywhere.
How many changes to treatment have you had?
None to date. One looming.
How are you coping?
Emotionally very well. I don't think ahead. If anything scary crops up (say, in Facebook) I place it in the box in my head with a tight lid. I’ll deal with it when I have to. Pragmatism? Ostrich? I don’t care because it works for now. I know it won’t always protect me but, for now, I’m grateful. The spanner in the works is my husband, already locked in loss.
Do the side effects affect your life daily? If yes, please explain
I experienced severe side effects from primary chemotherapy and it’s hard to know what is what. I would say capecitabine has exacerbated my peripheral neuropathy and my joint/muscle damage, possibly the neurological damage. I’m finding it harder to walk confidently as I tread on my own feet and veer slightly to the right - there’s some disconnection or loss of proprioception which is a pain in the butt. I am not safe wielding a kitchen knife or grasping a kettle but I have so many prescribed exercises for virtually every part of my body, there isn’t the time to do them. My fault, I fear.
Have you found a routine that works for your everyday life? If yes, please explain
Husband does all chores round the home and all the ‘cooking’. I do all the brainwork like online banking, shopping, organising stuff. A reasonable balance we’re both ok with. After any activity, even a visit from a friend, I’m hit by fatigue. I just listen to my body and rest it.
Do you feel anything is missed when it comes to living with secondary breast cancer? Medically or Socially
Absolutely. I can’t fault clinical care at the hospital but the liaison between hospitals and GPs is appalling and it seems that GPs just wash their hands of you, assuming the hospital deals with everything. I’ve been told my GP practice will support me at end of life. Sorry, I need support NOW.
There is very poor provision for the emotional toll of this condition, on patient and loved ones. Covid brought a loss of a lot of support services. Despite the NHS Plan for cancer, there is no named, let alone trained, breast care nurse and no additional support. You have to get out there and find support for yourself which simply is unacceptable but there’s nothing else you can do. To be frank, I do feel we are written off by all but the oncology staff. Who takes priority - someone likely to die soon or someone with their whole life ahead of them?
Have you treated yourself to anything since your diagnosis? If yes, please explain
Regular reflexology/reiki sessions, weekly psychotherapy (both of these were in place before even my primary diagnosis but have taken on a different role in my life). A summerhouse so I can enjoy outdoors in privacy and throughout the year. I’ve treated others a lot, which makes me feel good. I’ve realised the futility of saving money when I have no family but my husband and an estranged brother so I ‘give’ it away by organising treats like spa days and providing practical support where it’s needed.
Has it changed your perspective on life? If yes, please explain
Yes. I’ve learnt not to be afraid, after a lifetime of anxiety and panic disorder and phobias. These still hold onto me but the real monster, cancer and inevitable death, has no power over me. I find that amazing and I am so very grateful for that fact.
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