If you don’t already know, I’m a trustee at Breast Cancer Care. They’re a great support to women with breast cancer, at whatever stage, and my position means I get to be really involved in helping shape their services, their fundraising and how they’re run as a charity facing uncertain financial times. So they take up a lot of my thoughts. However, there is another organisation that I’m more familiar with in some ways – Marie Curie.
To cut a long story short, I’m feeling no happier than last time I wrote – there have been scans, surgical appts, diary shuffles, lost prescriptions, medical confusion. Blah blah blah. Plus I’ve actually been really busy in work the past week or so. Today I went to the Marie Curie hospice, the place I regularly visit for counselling. I have a palliative care team there, including a doctor and a specialist care nurse that I see every couple of months. They just check I’m doing OK, whether I need any support from them, whether I have any questions. I saw the nurse today, she asked how I was and I burst into tears. She very gently asked how she could help, and I confided how confused I was, how afraid I was of dying and who was going to help me if things started getting bad one day. We then discussed the various types of support they could offer – as an in- or out-patient, whenever I might need it. And I felt better just knowing there were people who actually know how to deal with this stuff. Stuff like abject fear. Utter bewilderment. Grief. Bad stuff, generally.
It’s coming up to 3 years since my first diagnosis, 3 years since this whole nightmare began, and it’s tough. Especially when I think back over everything that’s happened during that time – and there has been a lot – and realise how difficult certain situations have been and how even Alison, who I adore, isn’t a comforting presence any more. How can she be? She has to tell me the bad stuff in the first place. The last 3 years has involved some very different waiting rooms – from the GP, to the mammogram place, to the consultant’s office, to the oncologist, to the research clinic, and finally to the hospice. And actually, of all the places to end up, the hospice is the most peaceful place I’ve experienced so far. Everything is geared to you, nothing is missed, there’s never any delay or the general sense of chaos there can be in some hospital departments. Just quiet. And empathy. And patient-centred care to the letter. They don’t sit me in a chair and gently break bad news, they don’t ask me to make any difficult decisions and I don’t get that sick-to-the-bottom-of-my-toes feeling when I go in there in case they tell me something awful. There’s no “think positive”, “keep fighting” – just absolute calm and not to get all diva-like, it’s “all about me” and what I might need as a person trying to somehow live a life with this black, black cloud hanging over me, rather than a patient. I’m allowed, in a way I’m not anywhere else, to just BE. The mask of “I’m fine, I’m fine” gets left at the door.
I cannot tell you how frightened and confused I am at the moment (I know once I have a plan for next stage treatment next week, I’ll be alright – it’s just the uncertainty) but I can tell you how much better I felt today after visiting Marie Curie. They’re experts in palliative care, which isn’t about dying, it’s about improving people’s quality of life at whatever stage – and I speak as someone with a potentially life-threatening illness who is very much alive and well. I suspect this is the start I’ll have of a long relationship with Marie Curie, I hope so anyway, so I can’t stress enough how important it is to at least just buy a daffodil if you see people selling them this month. Discussing it with my friend Anna tonight, she called those nurses “living angels” and she was spot on, that’s exactly what they are.