Hi Rochelle
I was very moved by your post and sense a load of anger bubbling under the surface. Yes, you’re mum is putting up with a lot but she has her treatment and her symptoms to focus on. You, as carer, daughter, friend, are left standing by feeling pretty helpless because these are things beyond your control. The biggest worry I have as someone with MBC which is triple negative is the burden on my husband and how he is failing to manage all his emotions this time except with a kind of shutting down, as if, if my life is crap, so should his be. It breaks my heart that I can’t shift his perspective to match mine.
You are right about the internet. The more we read, the worse we feel. That’s why we always advise people to avoid Google. It’s not specific to your mum’s unique diagnosis and experience and it certainly doesn’t give a toss about your emotions because it has none itself. Secondary BC is unpredictable so you may read that life expectation is, say, up to 5 years BUT that’s only a statistic. Your mum has already beaten the odds so you know how misleading the data can be.
You say she has a small this and a small that. My CT scans frequently throw up small whatevers and then they aren’t mentioned the next time, as though they never existed. Obviously my treatment (capecitabine) has worked or they were small areas of interest, not lesions or tumours. Your mum’s next treatment may well be the one that works for her in keeping it all contained, even removing some of the metastases.
You say you’re looking for some positivity. I’m a great believer that that word can do a lot of harm because it means that, when we feel bad, we’ve failed - we’re not being positive enough. I’m also against all those battle analogies we hear thrown around. A battle has a strategy and one outcome. It also starts more or less with a level playing field, something you don’t get with cancer. Cancer is much more than that. It’s a physical disease which the oncology team can deal with but there’s a massive underside that gets overlooked : cancer throws up a storm of emotions, most of them negative, and we bat them aside or feel ashamed or angry that we feel that way when in fact it’s perfectly normal. Bad feelings need to be processed, otherwise we aren’t in a position to find and enjoy the good feelings. I myself am beginning to battle with the anger side of the grief. Generally I’m being quite stoical - I can’t change any of it so let’s accept it and go with the flow. But I suspect my treatment is beginning to work less effectively and I can feel that anger deep down. My thoughts are creeping towards It’s NOT fair, why me? Finding ways to express this safely isn’t easy but it has to be done or it festers under the surface indefinitely.
Don’t forget yourself when you’re immersed in your mum’s suffering. Find people who understand to listen to you. Maggie’s Centres provide an excellent service, as do the nurses at the number above. You might ask your hospital if there are any carer groups they know of, because just being with people dealing with the same helplessness, the same distress is empowering. See if there’s a well-moderated Facebook group for people caring for cancer patients. But also, please don’t pressure your mum into thinking the way you think would help. If she feels sh*t and scared witless, go with that. Don’t urge her to be positive because sometimes we can’t and we’ve got to find our way through our own maze of emotions (and physical symptoms) without someone else’s being added to the mix.
She is very lucky to have you at her back. But don’t forget to look after yourself at the same time. You don’t feel positive right now. Of course you don’t: your mum’s been shattered by dreadful news and neither of you knows what lies ahead. Drawing on the experiences of the support groups I have, there is every reason to assume her treatment will deal with these outbreaks and she’ll be back to living with MBC pretty soon.
I wish her all the best with her new treatment.
Jan xx