Keeping the Wheels Turning

Blimey – what a Bad Blogger I’ve been: Not updating my blog for , yikes, months! Well, I’ve not fallen off the planet or taken to my bed; a general lack of posts means all is going smoothly, finally –  it’s a case of “No News is Good News” !

My new CNS, covering the previous CNS’s Maternity Leave, is on secondment from Breast Cancer Care and I’ve met her before – Liz is intelligent, has a sense of humour, is suitably dynamic and assertive and, maybe best of all, is  used to dealing with the women who fall through the net so, to her, I’m normal and she knows what sort of support might be good for me, and how to get it!

Between us, aided and abetted by the ever-lovely Dr Charlie, we are trying to get me Direct Payments, to pay for my cleaner, and re-assess my Housing claim to get me more appropriately housed.

Dot ‘n’ Carry, my crutches, have been out and about – we all went to Hope for the week, for the Bike It National Conference – 54 pairs of eyes watching me and 54 pairs of willing hands (very willing; my friends and colleagues are very lovely!) meant I could use my crutches without compromise; no trying to balance on my crutches and carry a cup of coffee; I even got absolved from walking much or going up and downstairs too often, as people would offer to fetch Stuff for me. The result of which is that, since coming back from Hope, I’ve not needed my crutches at all!

I took them with me on my Highland Adventure to the Isle of Lewis, mostly for the Priority Boarding – but didn’t use them at all once I got there! I can now walk without limping and without any pain, the only restriction remaining seems to be squatting/crouching – I can do it just fine at the time but the next day I’m stiff and limpy. More to do with stiff muscles/hip flexors, I think, than weakness in the bones.

I’ve been swimming a few times and can still do my mile – I’m a bit wobbly afterwards and I don’t like having to traverse wet tiles; more the fear of falling than any actual unsteadiness, but no lasting ill effects – rather, when I do exert myself a bit, I feel much better; stronger, happier, more able, for the rest of the week.

And I’ve started cycling again – I did a 20km ride last weekend (in aid of Cancer Research UK, so really just to keep Dr Charlie in employment!); did a little ride (about 8km) on Monday; and cycled to work today ( there and back will be about 12km, but with a long sit-down in the middle!) – first time I’ve cycled to work in about 6 months! It was harder than I remember, but I am somewhat unfit – and In seriously over-ate while I was in Hope and Lewis so I’m the size of a hippo!

And I’m semi-officially off my crutches: I saw Dr Charlie this week and didn’t take my crutches with me. I explained there’s no pain and no limping and I’d not used them for 2-3weeks. Dr Charlie didn’t do the Sadly Disappointed voice, nor even the Slow Sad Headshake – he said something along the lines of “I’ve told you what I need to tell you; If you don’t feel you need them, fair enough”. I had a CT last week, so got the results when I saw him – all is stable in the liver and breast mass. I’d rather hoped for clear signs of improvement as, from my perspective, the breast is noticeably improved. Still lumpy and mis-shapen but more like a sock of dried peas, than a sock of marbles, as it’s previously been! The Capecitabine is at least holding things steady, with the tumours, but it’s a long, slow road with still another 10 cycles or so to go. We’re continuing with the 1 week on, 1 week off regime and have dropped the dose, as my hands and feet flared up again, while I was in Lewis. Not as bad as the first time, but bad enough. The more promising news is that the tumour markers have been coming down, at every blood test since I started on the Cape. They are only used as corroboration so confirm that the Cape is working.

In view of my lack of limp, I’m to have an MRI early Dec, to see how my hip is doing. Dr Charlie is hopeful we’ll see some sclerosis (thickening) of the bone; me, I think we’ll see a miracle cure! Then it’ll be another CT in Jan, to check up on the Cape.

And we have 3 candidates for the post of Bike It Officer Support Assistant: I feel a bit of a fraud as their job is to do the bits of my job I can’t, or couldn’t, do, ie cycling, lifting and shifting, standing for long periods. But I can mostly do those things again! Ah well, it’s a Government Funded thing, so it’s not costing me or Sustrans anything and it gives me the option to not over-exert myself and push my luck. But it feels so much better to be back on my bike and keeping the wheels turning!