Making Your Mind Up!

You can add your own image of Bucks Fizz and the 1981 Eurovision Song Contest (No, I had to google it). But if I have sufficient food and wine, I might be taking my skirt off later!

So, Dear Reader, where had we got to? Ah yes; working on the Clinical Nurse Specialist’s communication skills: After the first hour long phone call, the agreement was that she would make an appointment for me at the first clinic  after my MRI scan; so we had the results of the scan and so as much up to date information as we could possible need to make  a decision about treatment choices. (Did I tell you the Main Man wanted an MRI of my spine? Well he did). When she called me a day or two later, with a time and date for that extra appointment, she thought it was just to get the MRI results! The whole issue of discussing treatment options and finding the most appropriate one, not just for the cancer but for me, personally had fallen out of her already empty head! Hence the second, hour long conversation!

I called  on a day I knew she wasn’t in (she only does 3 days a week), to test her claims that messages were picked up and responded to. She claims a message was left, but I never received it. OK, these things can happen, but…So I called again on a day I knew she was in – and she called back to say she couldn’t talk to me then and could she call the next day! In all, it was 5 and a half days between my first call and her actually granting me the time to talk to her. Sufficient level of support? I think not!

At the end of that second call – an almost exact repeat of the first call! – I suggested I email her, in bullet points, the issues I wanted to discuss. And it immediatley became clear that this was necessary as she said “So the most important thing for you is your fertility”. Errr, no as there is not much point in retaining my fertility and being dead! For me, the top priority is to have confidence in my treatment and in the team treating me. I had repeated this, in various forms and formats; altering syntax and vocabulary; offering the same information in a variety of ways – AND STILL THE STUPID BINT DIDN’T GET IT!!!

A brief diversion now into MRI scans – Do. Not. Want!!! I think I had my first ever panic attack! You are fed into a tiny, tiny, tiny tube; your arms are pinned to your sides; and there is no way you can get yourself out!! However, the staff are very use to people freaking out and were very capable and understanding as I calmed myself down and we tried again. The nurse gave me a Top Tip of shutting my eyes and this worked very well. They also played soothing classical music to me, but as the machine is very noisey I couldn’t really hear it. And they kept up a running commentary throughout. So I survived, mostly intact, but I’ll be happy not to have to have too many more MRI scans!

And the appointment came  round, 3 days before Christmas, to get the results and discuss treatment choices. The scans didn’t really show anything new, apart from a couple of slipped discs and a lot of degeneration, and that week’s Registrar at least expected to give me copies of the results and a reasonable level of information on what they showed. Personally, I still don’t think they are taking pre-existing conditions sufficiently into account, but that’s one for another day.

And then the conversation about treatment began. I explained how it had not happened previously; gave him some insight into the shortcomings of my previous oncologists; and it was straight back to the same old, same old “Your cancer is hormonally responsive – we tested it again and it really is. Hormonal treatment is working. Take our word for it. You are Chubby Checker and I claim my £5″!!! He then said, “But of course if you prefer not to have any treatment we can’t stop you and will do what we can to support you”. Sorry, what?! I have never ever ever said I didn’t want treatment! That’s the gormless CNS not understanding what I said. Again! I said, categorically, that I had no intention of committing slow suicide but that my ideal would be a treatment that pushes the cancer so far back I could have periods of no treatment. CNS pipes up then and says that can’t be done, and I pointed out that, actually, that’s exactly what I already had done: Now we know the lesion on my liver is, was, and always will be cancer, when I stopped the Tamoxifen in Feb ‘07  the cancer was sufficiently diminished to allow me a year of no treatment, before the cancer became evident, and a further 6 months before treatment actually began. 18 months of no treatment and I didn’t drop down dead! I didn’t have any symptoms, not even tiredness or looking pale and wan! In fact, that was my best year out of the last 10! The cancer didn’t even progress very far – if at all! There is no way to tell how long it has been in my bones but, as it was already in my liver when I was first diagnosed, there’s every chance it was already in the bone too.

This didn’t really sink in withe reg – they’re not very good at thinking outside the box and don’t have the authority to, anyway. So he just banged on about chemo and hormone treatment, pausing every so often so he or the CNS could ask which I wanted. But I refused to commit myself; I said I wouldn’t be pushed or bullied into making a decision that day. The CNS looked suitably shocked that anyone would think them capable of forcing a patient to a hasty decision, and then immediatly asked if I was concidering chemo – Err, hello? I’m not making any decisions today. Nothing is ruled out, but nothing is decided upon either! I have another appointmnet early Jan and will see my psychologist and GP before then, so can seek counsel of them. And anyone else who can offer further information.

One of the difficulties I have with the current treatment is that I cannot monitor progress, or lack thereof – I can’t see my own liver and, as there have been no symptoms, a continued absence of symptoms is very hard to attribute to an improvement or deterioration or even a stasis of the disease. My poor boob, however, has remained lumpy and has become quite tender and painful again. So then the reg said he’d examine me, to see if there had been any change. I pointed out that, as he had not examined me before, he would not be able to compare this physical exam with the previous one, so CNS offered to get the Main Man.

He came in saying how all the scans showed an improvement and this was the right treatment for me and had to be reined in before he got his foot too far down his throat and told that we had been discussing treatmnet options. And I again said I really wanted a treatment that allowed me periods of no treatment and HE said “Funny you should mention that…”  He had recently attended a conference ( A “symposium” in fact, though I thought that meant “Knife and fork tea”) that advocated periods of no treatment for hormonal cancers as that allowed the cancer to become re-sensitized to the treatment, so making it more effective for longer. Good to see the clear communication of my desires to my nurse and between my nurse and my consultant as he had quite clearly not been told what I wanted; my nurse quite clearly did not know what I wanted; and my consultant clearly did not know that this new variant of an established treatmnet would be of interest to me and the CNS had never heard of it!

The lack of knowledge and understanding from my nurse – the person who is meant to be my advocate and offer advice on things like treatment choices - is bringing me to the conclusion that that particular clinic is not the right one for me. Add to that a consultant that seems to be a bit too firmly committed to endocrine treaments for hormonal cancers, regardless of the patient’s feelings on the matter; and the not inconsiderable issue of ever-changing Registrars and so no continuity of treatment and I think yet another change will be in order in the New Year. This isn’t a decision reached lightly but it is one my psychologist and GP have both suggested. It is all too clear that the CNS and I have problems with communication yet she is meant to be my main contact; I object to being pigeon-holed as a cancer “type”  and so offered just the standard treatments for that cancer, when I am so far from being a standard patient that I can’t see any common points of reference between me and my life and all those other women with ER/PR +, HER2 – breast cancer; and I have to have confidence in the treatment and the team delivering it. The Marsden is doing better than the previous two hospitals but only Dr Charlie suggested anything other than Bog Standard Issue treatment. And no nurse has yet come anywhere close to the personal support and involvement I have with the very lovely Jane, up in Cheshire.

So I shall set my GP on a Quest – and you can join in too: to find out which clinics Dr Charlie is part of, at either branch of the Marsden, and how do I become his patient, when he isn’t exactly a Consultant? An d how do I box Nice Jane up and get her shipped down here, from Cheshire?!

A Very Merry Christmas, to all our Readers

No, I’m not sick, or tired, or too ill to write or dead. I’ve not really had much to say, that’s all.

The second appointment at the Marsden was rather less a positive experience than the first one: I first of all saw a Registrar (age approx. 21 – I have shoes older than she was!), who asked me to “Tell my story” – I’m sorry? You think I’m making this up?! This is no story; this is Real Life – My real life! So anyway, I told her the edited highlights, stressing the Tale of the Spotty Liver and how it was equivocal (Dr Charlie’s word) as to what was going on there, and Girly Reg’s response was “Well, Good News, it IS cancer”! Well pardon me for failing to jump for joy but just how exactly is that “Good News”?! She went on to say they are now sure it’s cancer because it’s responding to treatment. Me, being a belligerent bugger and a pedantic cow into the bargain, asked which two scans, precisely, was she comparing. This was a bit of a tricky question and she tried to avoid answering, saying it made no difference; the cancer was responding and that’s all I needed to know. My Arse, it’s all I need! I told her it made a difference to me and my lovely friend Kathryn – who I’m sure hadn’t expected accompanying me to an appointment would turn into referreeing WWIII! – suggested Girly Reg went and found out which scans were being compared. And with that, Girly scuttled out and left us alone, in a rather grim little consulting room, for 20 or 30 minutes! After that, we were graced with the presence of the Main Man himself, who proceeded to talk over me whenever I tried to answer his questions or offer information. He kept saying “That’s in the past; we’re moving forward” but it all seemed more like standing still to me. His bottom line was “The cancer is hormonally responsive; you’re on hormone treatmnet; the liver and bone are improving; Lallalalal, I can’t hear you”

He told me why he wasn’t even going to offer me chemo or surgery or the chance to get a word in edgeways and basically left me with Hobson’s Choice. And, just like Stupid Dr Stupid Kim, he let me walk out crying. Boo hiss! I had to hang around to make new appointments and have some blood taken and it was the phlebotomy nurses who tried to salvage something from the day – one nurse (in a very badly fitting uniform, that’s about all I remember about her!) said it was their aim that no patient should leave the Marsden feeling worse than when they came in. There are no breast care nurses in that clinic, but there is a Clinical Nurse Specialist for Secondary Breast Cancer – the Marsden pride themselves on being so forward thinking and patient-centred that they have such a post – but she wasn’t in clinic that day. Or so they said; she should have been in the appt, to support me, but “had a meeting”. Except, when Nice but badly dressed Nurse called her not only was she in the department but free to see me! So I went and saw her.

And we talked round and round in circles for an hour!

And two days later, when she phoned be, by arrangement, we did the same a gain.

And two weeks later we did it a third time!

Anyway, the outcome of all that endless repetition is an appointment to discuss treatment options. The appointment I would have expected to have the day secondary breast cancer was confirmed way back in June!

Other information, from that second Marsden appt., is that the marks (yup, we’re back up to two again!) are shrinking; the bones are sclerotic, rather than lytic – that is; thickening, rather than thinning. Mr Consultant is happy with the hormone treatment. I’m less so – not that I’m eager for chemo or surgery; I just want some choice in the matter. Thanks to Dr C and Dr Kim, and their expectations of failure for the hormone treatment, I have little faith in it. I have no confidence in the treatment or the team treating me, and that has to change. I can’t keep changing hospitals and consultants – I need consistency of care; I need rather more support than the Clinical nurse Specialist seems able to offer; and I need to feel that treatment is a) my choice and b) the most apporpriate treatment for me.

And in the meantime, I continue to work fulltime – I cycled just over 60 miles last week, all at breakneck pace as it was flipping cold! I have an interview for promotion next week; I’m busy doing Christmassy things and am generally just the same, in thought, word and deed, as I’ve ever been. The cancer side of things may be more ho hum than ho ho ho, but  bollocks to it; it’s Christmas!

So a Very Merry Christmas and a Riotous New Year to all our Readers! May all your dreams come true, except the one about the giant sock and the flesh-eating slugs, cos that’s just weird!