Moving forward

Let’s see where we’re up to now: A week after the last epistle I was back at the Marsden for my IV zolly and to see Dr Charlie and the radiologist, Dr Imogen.

First I went all the way over to IV, only to be told “Oh no, you’re in Clinic first” So I went aaaallllll the way back to clinic to be told “No, you were right, you’re in IV first”! All on crutches; hands, feet and monster munch hip all still a bit sore. I’d made a fuss in IV, pointing out I’m not telepathic and if arrangements are changed it would be helpful if they actually told me, so I’d been followed down by one of the IV receptionist peeps, who went to find Ann-Marie, the fab fixie pixie. Ann-Marie came out to me in the waiting area; said yes, it was IV first and she was coming back up with me to knock a few heads together!  So not a brilliant start. But the nurse in IV was really rather good; I had a big moan and gripe to her; about the CNS situation and the Head Nurse’s lack-lustre response and the total lack of local support, etc. She gave some really sensible, intelligent and useful suggestions; like pushing Head Nurse to give immediate answers, even if she couldn’t give me an immediate appointment; and keeping a record of all that’s been said and not done; and other things along those lines. She also said my calcium levels had been a bit low last week so she did my bloods again.

Then I saw Dr Charlie; to check my hands and feet were sufficiently healed to start the next round of chemo (Dr Charlie has now seen my feet! And they looked like lizard feet! And he’s still lovely!). Ann-Marie was with us again, even though that isn’t actually her role, in clinic. But she’s bloody good at it, so it should be! I told him the nonsense Drippy Sue had come out with and he offered to tell me what he’d actually said and, guess what, it was somewhat removed from what she’d claimed! He had agreed to fill in a DS1500 form, to accompany my Disability Living Allowance form (this is the form that speeds up payments, for when a patient has a life expectancy of less than 6 months – Drippy Sue said Dr Charlie thought it appropriate, in my case, implying I had a very limited life expectancy) but his reasoning was he just wanted me to get the payment sooner, rather than later, so I can start making to necessary changes to my living arrangements. He said he was prepared to stand up in court and swear blind my life could be limited by that much but that, right now, it wasn’t. He offered to talk life expectancy but I declined! It’s sufficient for me to know the lesions in the liver are stable – that’s the only area, so far, that could be come life-threatening and right now it isn’t, so that’ll do for me!

Next he said he’d only agreed to a few days in the hospice because he wanted me to be pampered (aww, bless) while my house was sorted but, with hind-sight, he didn’t suppose it could be done that fast. I said I reckoned it would be 6 months before there was any movement from Benefits/Social Services/Housing on that front, by which time my lease would be up and I could well be moving anyway – another reason for not wanting stairlifts and such put in this house; by the time they do it I’ll have moved out! He had NEVER said I needed round the clock nursing care so Drippy Sue saying I needed hospice care or hospice-at-home was a pure fiction.

I told Dr Charlie that I was going into the office again, rather than working at home, explaining that it actually meant I was moving less and was better supported. And he didn’t even suggest I signed off sick or stopped driving this time. And then we finally got onto my current treatment – having seen my hands and feet, he wanted to reduce the dose, as well as change the regime, but I asked to at least try it at the same dose, and see if the 1 week on/1 week off stylee was sufficient to control the Hand/Foot symptoms. So that’s what we’re doing. He said my bloods showed my potassium was low, so prescribed Sando-K tablets; they’re effervescent tabs so for the next 3 days I had to end each meal with fizzy, salty water – yum! I said the IV nurse had said my calcium levels were also a bit low, so he prescribed Calcichew tablets as well, 3 weeks of those ones.

Then Ann-Marie took me round to see Dr Imogen to talk radiotherapy – very different to all I’d been told or had read: Quite a lot of choice as to how much got zapped but we were happy to agree on a very contained area that hit femur, acetabulum, and iliac. That put the right ovary in the line of fire, but kept all other girly bits and the bowel well clear. And the treatment would be everyday for 5 days and absolutely no hint of a suggestion of a thought of my having to be an in-patient for it! Again that was just fantasy on Drippy Sue’s part – an attempt to scare me into the hospice. I liked Dr Imogen a lot; she could perfectly understand why I didn’t want to be made permanently infertile, and go back into menopause again. She liked my response when I she said a common side effect is tiredness; “I don’t do tired!”; and was perfectly amenable to make my appointments as late as possible so I could at least do half a day in the office, before coming down for treatment.

Again, Ann-Marie had sorted out all my hospital transport so I got chauffeur-driven to and from the Marsden for the week of zapping. The first day was just Marking Up – a CT scan, to check the area they wanted to get, and a “derma-tag” a clear plaster with a cross on it, cos I again refused to be tattooed. I still think it a barbaric practice and think it’s akin to tattooing my hospital number up my forearm, like in the concentration camps! But as well as marking up, I finally got to see The Head of All the Nurses in the World (well, at least the Marsden)!

So what did she have to say for herself? That she wasn’t surprised to hear Fulham Rd CNS answered her phone when she shouldn’t - it’s been a problem since the walkabout phones were introduced, but Head Nurse would speak to all nurses AGAIN; that a CNS/keyworker should ALWAYS be present at a first appoinment and when there was a progression of diease and/or a change in treatment; that the problems with the Sutton CNS surprised her but, in a way, had taken themselves away as she was now on maternity leave; she agreed that for every patient that speaks out and makes a fuss (ie, me!) there are any number of other patients who feel the same but say nothing; that she would, with my permission, share what I’d said and my medical history with the new Sutton CNS, who would call to arrange to see me, ahead of my next clinic appointment. Oh and I’d taken her a Breast Cancer Care “So you’ve got Secondary Breast Cancer” pack and she loved it! I told her how very useful I’d have found it, especially the journal that forms part of the pack, and suggested they either get in BCC’s pack, or make their own. And I showed Head Nurse my appointment card with five different phone numbers scrawled on, to call “if I have any problems” and that I – a reasonably intelligent, educated woman – didn’t know which number I was meant to call when, and really just wanted one number – my keyworker’s – to call for any issue, and they sorted it all out. Apparently I should have been given an “I am your keyyworker” card, with one number on but…..!

What else? I’ve changed GP but, so far they haven’t impressed me. The Prospect Social Worker doesn’t know her job. I’ve applied, on my own behalf, for Direct Payments and a Disabled Parking Blue Badge. My DLA has come through already – at the highest payments for both Care and Mobility. I’m sort of back at the gym, but not on the regular kind of basis I’d like. Radiotherapy was fine and I’m back at clinic for the next round of zoledronic acid and capecitabine next week – though it might not be Dr Charlie for a while; apparently Sept/Oct is very busy for Research so he can’t always make Clinic. And we gave Ann-Marie the task of choosing which doc I see instead, so no pressure! And the new CNS hasn’t been in touch so that’s not looking too hopeful. I’ve sent off the Housing forms and the Rehab OT I saw is sending them a supporting statement. The Rehab physio came round with a sheet of chairobic exercises, they might have a little value, but they are aimed at arthritic old dears; but she’s at least got a slightly better idea of who I am and what I’m capable of though I’m still not holding my breath for any real help there. And I had a meeting with my Project Manager and HR Manager, about changes to working practice – a useful and positive meeting with a first-choice of How To Help Ruth being to get me  a part-time assistant Officer who can do my cycling for me. And HR found a possible assistance programme for me on the DirectGov site; something called Access to Work so that’s another form filled in.

And last weekend I was back on my bike! A friend was down for the weekend, to service my bike and put shiny new mudguards on and stuff like that. So I had to take it for a  test ride…and test out my hip…and a little pootle round on the flat wouldn’t do that…so we did about 15 miles, altogether, and went apple-picking! He hooked my bike trailer to his bike and we put Dot and Carry, my crutches in the trailer – how’s that for a “Can Do” attitude?! The cycling bit was fine, though I chose to walk up the steeper bits, rather than cycle; the forgotten orchard is on quite a steep slope and very rough ground and that maybe wasn’t such a good plan. But I did it with no serious ill-effects – I was very tired for the next couple of days but I had just had a week of radio and a week of chemo and hadn’t cycled at all for 8 weeks, and haven’t cycled any real distance for longer; so I was pretty chuffed with that!

And that pretty well brings us up to date. Oh, except I got my copy of Dr Imogen’s letter to the lovely Dr Charlie - and she wrote that she is hopeful that, if radio is effective, it will allow some remodelling of the bone ie that if the radio stops the hip from getting worse then the other treatments will allow some improvement. She’s the first one to say not just that all the treatments combined will stop the hip getting worse but might also allow it to get better. In my head I’m working to the idea of no more than 6 months on crutches, but that is just in my head and based on nothing more than my own perception of myself and sheer bloodymindedness, though a 15 mile cycle ride, and a tendency to leave my crutches lying idle, when I’m in the house, does give some hint that my hip/pelvis has more strength than has been implied. And, of course, I am the Incredible Healing Woman, with Amazing powers of Recuperation!!!! So, overall, my feeling is that, on all fronts, things are moving slowly forward, after months of slipping back. But, inch by inch, step by step, the care, the support, the treatment are all moving slowly forward.