Oh Sandy, I really feel for you. It can take weeks to arrive at the final (?) diagnosis - I had five different diagnoses over 6 weeks, the last coming after my mastectomy (I just wanted the thing gone). The whole thing can feel overwhelming and, yes, very lonely.
Now is the time to choose people you can reach out to. Is there a family member or someone in your social circle with experience of breast cancer? I found someone in my local book group and she took me to visit the chemo suites and took me for my first chemo. She also introduced me to the Breast Cancer Haven (closed thanks to Covid) and I’d recommend asking if there are local support services, even support groups, in your area. If you have access to a Maggie’s Centre, that would be good. For both of you.
Breast Care nurses have to be very careful what they say. They are not able to give you a diagnosis so your BCN’s response was tactful and constructive, not hesitant. The nurse can’t tell you things until the consultant has dealt with you - then they can clarify, advise, support…Fortunately it was backed up by your GP - you must have a hormone-positive condition in that other breast, something that will require different treatment from the initial diagnosis. It’s quite common but very stressful.
Husbands. This is a tough one and I can only speak from my personal experience of living for 52 years with someone who is emotionally illiterate! Yes, they are there physically and able to offer all the practical support going. Mine does all the housework and cooking as my hands are not as nifty as they used to be. I can’t unscrew a lid without ‘special’ equipment and there’s zero chance of safely lifting a filled saucepan! But the blow of my Stage 4 diagnosis has been too much for him and he is locked in his world of misery, focusing on loss, not hope. I feel he’s grieving already. Nothing has helped.
Maggie’s Centres offer support for family and friends and for carers. Macmillan can offer telephone or online support if they haven’t yet returned to face to face work. I’d suggest trying something together and then trusting the counsellor to recognise where the focus should be. That worked after my primary treatment for my husband, although he maintains I tricked him into it. I didn’t make him go back 6 times! When I got my secondary diagnosis, my immediate thought was how was I going to tell him!
Lesson - you are NOT responsible for your husband’s reactions, nor are you responsible for putting things right. He is. You will have enough to contend with. Give him a few days of space in which to get his head sorted and maybe he’ll be back to how you want him to be. It’s a huge blow and a reminder of human fallibility, which is hard to take. You have one idea of how your world is and suddenly the carpet is whipped from underneath you. I’d suggest involving him directly, taking him to appointments for support but also to get familiar with your world of breast cancer. Give him a written list of what you want to know on 4th and ask him to make notes because, believe me, it goes in one ear and out of the other the moment you leave the room! Give him a role or a purpose.
For yourself, I would strongly recommend ringing the breast care nurses at the number above. They are excellent. They will just listen if that’s what you need, advise, explain… I can’t fault them. There is also a Someone Like Me service where you are matched up to someone who has had similar experience to yours. For him, time, practical involvement and hopefully you’ll gradually get the emotional support you need.
I wish you all the best for what lies ahead.I promise you, it’s all manageable, just not much fun!
Jan x