Welcome back

I was pleasantly surprised this morning. I opened the blinds on the kitchen windows to be greeted by much activity. Birds seemed to be everywhere. There were at least four male blackbirds, each at their own level of the garden. A blue tit darted into the roses. A sparrow scurried around on the floor of the garden, stopping to eat anything of interest on the way. It is rare to see so many birds at any one time on the go.

It was particularly pleasing to see some of the little birds again. They disappeared with the garden makeover in 2014. There was so little by way of shrubbery or trees to give them cover especially when a peregrine falcon comes hunting from time to time. Clearly they’re starting to return. Maybe it’s the new feeders I’ve put out – we had to replace some that had blown off, shattering, in the recent gales. Whatever the reason they are very welcome.

On a rollercoaster of emotions

It’s been a traumatic couple of days. When the post arrived on Wednesday, just after I’d written my last blog, it included a letter from Wythenshawe Hospital cancelling my appointment next week. No reason was given. No new appointment was going to be given. I should see my GP.

My first course of action was to ring the hospital & talk to the surgeon’s secretary to see if she had an idea what had happened. All she could tell me was she’d cancelled all new referrals. She’d only been there two weeks so didn’t know any more.

In the afternoon we went up to the surgery to see if I could get an appointment there - not until March 5. The receptionist suggested in the circumstances I should ring first thing in the morning & get an emergency appointment.

So Thursday I spent a long time in the phone queue but I eventually managed to procure a GP appointment mid-morning. He was very sympathetic but he had received no post since the letter from Christie’s advising them I was going to Wythenshawe Hospital. He was no wiser than me. He suggested I had another go at ringing Wythenshawe, insisting I spoke to the surgeon or his MacMillan nurse who I’d spoken to last week.

I spent the whole afternoon trying to get hold of the secretary so she could put me through to the appropriate person. I rang the phone for 5 minutes at a time, redialling every 10 minutes or so. No answer & no answerphone. By 5pm I abandoned the effort.

First thing this morning I was back on the phone. On the second attempt I finally got through. She put me through to the breast care nurses. The one I spoke to said she would look into the situation & ring me back.

She promptly did so. All new referrals were indeed being cancelled as the surgeon was being overwhelmed by the sheer number of referrals. However, those forwarded by Mr Barr at Christie’s, where the surgeon had actually spoken to Mr Barr  were still going ahead. I was still expected next week. It was an admin error. The new secretary hadn’t realised there were two categories of referral – the general on & those from Christie’s & the latter had not been cancelled. I sighed with relief, especially as I had not yet cancelled the hotel I’d booked for the night before the appointment.

I’ve spent the last couple of days wondering what was best to do. Should I go back to Christie’s & see if they could refer me to another NHS surgeon? Should I go private? Had I misunderstood what Mr Barr had said & that he wasn’t prepared to operate himself? Did the price quoted by Mr Barr’s secretary include pre-op assessment & post-op check-ups? We don’t have private health insurance so even the basic stay would cost thousands. What if something went wrong & I ended up being longer in hospital, could we afford that? Or should I just accept that I’m on palliative care, where they’ll try to keep me comfortable for the rest of a curtailed life? One thing I concluded is that I could adapt to losing my arm, but I’m not sure I could cope with spending my remaining life dominated by hospital treatment, some of it with nasty consequences. I’ve already spent 6 months doing that. If I’m going to die sooner rather than later, I want to have the energy & time to enjoy that life, to go on holiday etc. But maybe now I won’t have to face up to that one. Wythenshawe here I come.

Appearances

AS my appointment comes closer, and with it the possibility of an op, I find myself wondering what I should do with my head. A wig is not practical if you are going to spend a while lying in bed or propped up on pillows. Equally a scarf is liable to slide around.

My hair is growing now. Indeed at the back of my head, where the psoriasis used to be, there is a positive thick white mat. If my whole head was like that I would just abandon the wig & brave the world bare-headed. 

However, although hair does cover most of my head now, it is so thin the scalp shines through. I want to look presentable if I do have visitors while in hospital. For that matter I don’t want to frighten other people sharing the ward. I’m trying to tell myself there is time yet for the hair to grow sufficiently to just happily abandon the wig. I hope so.

It’s strange the little things you worry about. It isn’t as if it’s even certain yet that an operation will be happening. My suspicion is that a lightweight turban or hat is the solution but I won’t buy until I know an op is going ahead.