https://forum.breastcancercare.org.uk/t5/Chemotherapy/Questions-about-taste-appetite-etc/td-p/1261438
Two helpful replies and one telling me that she’d experienced none of what I shared. Well, lucky you. I’d have preferred not to hear that!
Oh, and I’ve postponed my hair loss appointment. My chauffeur has a stinker of a cold but, more than anything, I don’t think I’ll have enough energy. I have two days now to pick up, get some strength and face the bone scan. I definitely have learnt a lesson: I’ve looked up what it involves and I’m not catastrophising again. It’s such a waste of energy.
Meeting the teams
I got a call within a couple of days of the oncology consultation. True to his word, Dr K had arranged for the breastcare nurse at the private hospital to show me round. Anne took me as driving was still awkward. I’ve only just invested in my first automatic, having regretfully waved bye-bye to my coupe on the basis that the panache of a Thelma or Louise was less helpful to me than no clutch causing searing foot pain. Yes, I could just about have managed but would I be safe on the roads if I couldn’t yank on the handbrake?
The nurse was delayed with a patient so I talked with V, the oncology unit manager. Having almost decided I couldn’t risk losing all our savings (a tiny risk, but still a risk), I felt a bit guilty but V was aware I was undecided. She did nothing to persuade me to use their services, just wanted to know all about me. So I talked and talked...and talked some more. V made me feel like everything I said, everything I feared mattered to her. As far as it’s possible to feel good in an oncology unit, that’s how she made me feel. Of course, I left even less decided.
A week later, I heard from C who works at St James’s. I honestly hadn’t expected this level of support. We arranged an early evening visit on 21 November when things were quiet and C said she’d also like me to visit the actual clinic day a few days after. Maureen took me as she knows the place well and was able to navigate the multi-storey and take the shortcuts. I think Den would have liked to come with me but I was so glad he hadn’t. Bexley Wing is for every kind of cancer and I glimpsed a couple of patients who almost broke my heart: a man wearing a false face and a woman who’d lost her legs and was really struggling to get out of the place.
C is a Macmillan breastcare nurse. She, like V, made me feel that every little worry, every little detail mattered. I’d gone armed with a raft of questions, composed with my psychotherapist who’s been brilliant and proactive in her support. The answers were all positives: patient-centred treatment definitely. The scale of Bexley felt overwhelming, even when almost empty. It reminded me of a factory system, room after room of comfy chairs and drips. Where were the vomiters? Why did the patients look relaxed, if resigned?
C introduced me to various nursing staff who all gave me time and attention and had a reassuring suggestion to make about treatment. One nurse I mentally called Pixie went so far as to identify the overflow room as a place for my first treatments while I grew used to it and took us along to see it. Perfect. One huge fear I had was that I’d have a panic attack and not be able to escape. The thought of others witnessing my panic and embarrassment horrified me. I left, certain that I’d transfer to the NHS.
The second visit I managed to drive myself and took Den along. He admitted it was depressing but C reassured him, with her bubbly personality and genuine concern that they make my experience as bearable as possible in the circumstances. My decision was sealed when C explained to the nurse shadowing her that what we were talking about wasn’t just worry or anxiety, it was panic disorder that was completely debilitating if not addressed. That was all I needed. She got it. Obviously Dr K got it. I committed myself to being treated at the Bexley Wing of St James’s Hospital.
Then the long wait for transfer began.
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