Hi Psyche
Firstly I’m so sorry that your mum is having to go through this at all - and that you’re having to watch her do so. A close family member of ours, of similar age to your mum, has another kind of cancer and I can share our experience with you in the hope that it may help. Also I had a diagnosis of breast cancer this year and have had to learn very quickly how the medical team works.
We had great difficulty getting information from the relative about her illness. In particular it wasn’t clear whether the information gap was because she knew something she wasn’t telling us, or because she’d not asked the questions at all. We too had considerable concerns that she might not be getting the best treatment because of her age. She and her
partner dealt with it all with very dark humour and we found that this shut us out - the topic just wasn’t up for discussion. We were very scared for her and didn’t know what we should do, nor what to say. Eventually, of course, all the bottling up of emotions on both sides came to a head and there were emotional outbursts before we finally started talking properly. We now go with her to some oncology appointments. However, and this is very important, the medical staff will not talk to us directly - our role is as supporters and while this is bloody frustrating at times it is of course as it should be. What we now know is that the medical staff don’t hold back at all from telling her everything about her diagnosis and treatment, but she can be very selective in what she then relays to us. Whether this is because she doesn’t take in everything that she’s been told or because she wants to spare us some of the information is not clear… It’s taken us a while to reach the point we’re at now - of respecting her right to decide what to talk to us about. The trouble is that it’s so frustrating - we can see she’s suffering and she won’t let us in. We also, to put it bluntly, don’t know how long we’ll have her with us and that’s very, very hard.
Breast cancer is now dealt with in multi disciplinary teams comprising oncologists, surgeons, radiologists, breast care nurses and other professionals - that’s possibly a change since your mum’s original diagnosis. I had not initially understood this and therefore felt very out of control when I saw e.g., the surgeon who talked about chemo or the oncologist who talked about the surgery i would be having. Knowing that they work as a team is actually very reassuring.
I was told that i was being prescribed a particularly aggressive chemo regime because I was a younger woman and because of the type of cancer which I had. My understanding of that is that a) a younger body was better able to withstand significant side effects (including heart damage and sclerosis of the veins), and b) a high grade cancer needed to be blasted, whatever else it did to my body. You don’t know the detail of your mum’s diagnosis nor the treatment offered - these are issues you could ask her to tell you and you could then talk to staff at the BCC helpline who could give you general info.
Re the tests which are still outstanding, the oncologist already had information about the stage and grading of the cancer to decide on the chemo regime , my understanding is that the CT and bone scans will be to help to decide further treatment if required.
I thoroughly recommend Dr Rob Buckman’s book “Cancer is a word, not a sentence”. It’s intended as a guide to people who’ve recently been diagnosed with cancer, but I’ve found it really helpful not just in coping with my own illness, but also with how to communicate with our relative. It has a section on communication strategies and the whole book is a brilliant resource, explaining how diagnosis and treatment work as well as coping with some very complex emotions which are an inevitability it seems once cancer is part of our lives.
I do hope some of this helps you. if it’s any comfort to you, you sound like a wonderful daughter. You’re a bit older and wiser than you were last time your mum went through this - tell her how you feel and I hope you resolve those issues.
Sarah
XXX