What’s the difference between a “Keyworker” and a chocolate teapot?

B*ggered if I know!

“Any problems; any worries; call me. I’m your first point of contact. Here’s my card, I’m here to help”

Except you don’t answer the bloody phone and don’t have voicemail! How the blinking heck is that meant to be of any use to man or beast?! How can this week’s keyworker/clinical nurse specialist/ lead breast care nurse sort out my problems, if I can’t even speak to the flipping woman?

Grrrrr!

And why is it down to me, to flag up to them that blood tests at the same time as scans is A Good Idea, as then Dr Charlie gets all the results together?

I am fed up! And the fairies have forgotten to do my housework again. And my crappy rented house is falling down and I can’t afford to buy. And I’ve no chocolate!

 

Now imagine what I was like when I was menopausal, AS WELL!!!

Born in a barn? No, stable!

What the scans didn’t show: They didn’t show the cancer rampaging all over my body. They didn’t show a miraculous cure, either. And they didn’t show any significant change. But then, after one month of no treatment and just one month of Tamoxifen, no significant change was to be expected. So Dr Charlie, and I, am happy to carry on with Tamoxifen and check again in another month. Interestingly, when I asked if that meant another horrid MRI Dr Charlie said no, the CT shows more of what he wants to see. But he’s not ordered one of those either – he said I am the best indicator of any early change, good or bad. He did agree another bone scan was a good idea though and I said I would like a bone scan that is viewed with the knowledge I’m hypermobile (over-bendy; can bite my toenails, should I wish to) and so pre-disposed to develop osteo-arthritis, rather than just play “spot the cancer”. And he said I seemed much better – as in “calmer and happier”  – than the previous times I’d seen him, which added to his decision to continue with the Tamoxifen.

And we’re trying yet another anti-inflammatory – Dr Charlie seemed surprised that the breast has been painfully swollen throughout all treatment, only responding to anti-inflammatories and not to the endocrine treatment, as it hasn’t been documented as a cause for concern. Except by me, loudly and repeatedly! I told him that it has just been dismissed as irrelevant, all focus being on the liver, but – thankfully – that’s not his attitude. He seemed to say that a treatment that gives a good response in the liver should give a good response in the breast too. But, as far as I’m aware, there has been no clear improvement in the breast mass. Certainly from my perspective there hasn’t; only the diclofenac made a significant improvement but that was relatively short-lived and, although the arcoxia was better at the start than diclofenac was at the end, it wasn’t as good as diclofenac had been to start with. He was surprised I’d been prescribed arcoxia as, apparently, they are linked to cardiac problems, but he did agree ”arcoxia” sounds slightly rude!

And I met the Sutton branch of the Marsden’s Clinical Nurse Specialist – more platitudes trotted out in the sad voice, with the head-tilt. She seemed to think she needed to convince me the Tamoxifen could work, but I put her straight on that – I see no reason why it shouldn’t work! And I rejected her suggestions for how to alleviate the pain in the breast: “Come to our Pain Clinic” – a 3-4 hour round trip to learn how to cope with pain I can easily cope with? I don’t think so! And have I been put in touch with a Pain Nurse? Which, when we established she meant the local palliative care nurse, I also rejected; Prospect Sue couldn’t get her head round me going to work everyday! So New CNS hasn’t really been of any use so far – mostly I feel it’s too little, too late; all the things I needed a specialist nurse for I’ve already worked out or researched myself – and am now offering that knowledge to others. I still have bugger all support, from the nursing side of things, myself, but I can support others! What’s wrong with this picture?!

I was surprised to find how angry I still am about the lack of care/support I’ve had, from anything resembling a breast care nurse (lovely Jane in Cheshire excepted), through all this. That’s one to thrash out with Diana the psycho! But, so long as I have Dr Charlie as my consultant, and so feel he is listening to me, then I don’t really need anyone else to act as an intermediary. And Dr Charlie does listen and hears what I say. And what I don’t say! And seems as keen as I am that he, personally, should see me as often as possible – when discussing when to see me next he checked his diary, to make sure he was in clinic that day. Trust me, that is not standard behaviour from a consultant! Generally, once you are stable, you are palmed off onto spotty-faced Registrars, still wet behind the ears. Mind you, he probably realises I would chew up a Reg and spit out the bits!

So the bottom line is: Dr Charlie is still lovely and I wasn’t born in a barn, but I am stable!

Of doughnuts and drainpipes

CT and MRI scans are both, fundamentally, a type of x-ray ; a way to look inside the body and see what’s going on. They are each better for looking at different bits – CTs look at organs, MRIs do bones.

CTs are the easy one – the machine is a giant doughnut and the patient is fed through it on a trolley. In my case, it’s to look at lungs and liver so I’m scanned across the chest and abdomen. This means I have to hold my breath, while it scans – the machine even has smiley faces on, to show you how: a green, open-mouthed smiley, to show you to breathe normally, and a red, puffed-out-cheeks face, to show you how to hold your breath! And I can see the seconds ticking down before I can breathe again – less than 20 seconds. The only mildly uncomfortable part of the procedure is the contrast dye they inject into me; it’s iodine, of some kind, and puts a metallic taste in your mouth and a warm flush through the body. And makes you feel like you’ve wet yourself! Add to that the fact you need to be well-hydrated, so have just drunk a pint of water, and it can be a little un-nerving! But all in all no big deal.

MRIs, on the other hand…! That scanner is like a large drainpipe – a very clean and well-lit drainpipe, but a very confined space, nonetheless. Again, the patient is fed into on a trolley but then, as the scans are actually taken, it’s like you’ve stuck your head in a washing machine – an old, noisey washing machine. On an uneven surface, so it rattles and bangs even more. And then someone starts digging up the road, right next to you. And, to cap it off, Mr Angry starts pressing the Customer Service buzzer, right in your ear! It is LOUD! You are given ear defenders and they play music at  you, but you can only hear it in between each scan. I have my spine scanned, which has to be done in installments, and – even though I’m only 5′ 4.5″ – it takes 20 – 30 minutes, in total: Each scan takes between 3 and 5 minutes, plus a couple of minutes checking and moving me up and down the drainpipe inbetween, for a total of – I think – 4 or 5 scans. I’m not entirely sure as the only way I can get through it is to shut my eyes and zone out – you know, like when you have a smear test; it’s best not to think about what’s actually going on! So I come out a bit disorientated and I’ve lost anything up to an hour, when you add in the hanging around time. For the last one they wanted to put a strap across my head, to hold it still, but that was a constraint too far for me so I whimpered and they let me off!

The CT is to see if my spotty liver is more or less spotty on Tamoxifen, compared to Zoladex/arimidex. And to check my lungs are still clear. Those are the main organs breast cancer is likely to affect, but the scan will also pick up if it’s spread to any other organ, and can also see some of the bone involvement. The MRI is to look at the cancer in my spine, though it also gets a bit of the hips/pelvis too, and again to see if Tamoxifen is holding it back. But the other bones previously identified – ribs, shoulder, bits of hips/pelvis not on the MRI – have been ignored since November. If Dr Charlie doesn’t, I will be suggesting a bone scan when I next see him – bone scans show “activity” in the bone, but can’t distinguish between  the damaging activity of cancer and the healing activity, promoted by the Bonefos I’m on, so need some months to pass, after the intitial staging scans, before being repeated. Then healed bone will no longer be active and so won’t be confused with damaged bone.

 

I will also be asking Dr Charlie if better control of the inflammation/swelling in the breast can be achieved. I did 4 – 5 months of diclofenac, followed by about the same of arcoxia, once the diclofenac ceased to be effective, and now the arcoxia is losing efficacy and the red hot knitting needles are being threaded through the nipple again! I don’t really want to just address the symptoms and work my way through all the anti-inflammatories in The Book of Licensed Medicines; I would rather address the cause and stop it from becoming swollen and painful, in the first place!

I also want us to review ALL the different medicines I’m on: As Diana the Psycho put it, I am my own keyworker; I’m the only one that knows all the tablets I am on, so the only one that can make sure my consultant is aware of what I take. And maybe we can rationalise it a bit and cut down on the fistfuls of pills I take, morning and night.

But it will still be the school holidays, when I’m next at The Marsden, and I’m afraid Dr Charlie will be off and I’ll see a Registrar who will be Dr J’s mouthpiece (it’s really his clinic; Dr Charlie “shares” it with him) and I’ll be stamping my foot and shouting “Shan’t!” again. I know I can’t expect to see Dr Charlie every time, but I don’t want to hear of any test results or treatment changes from anyone but him; it was a long, hard road to find a consultant prepared to listen to me and I don’t want to have to listen to anyone else’s uninformed opinions again.

And I suspect, even if the Tamoxifen appears to be working, I’ll be back with the doughnuts and drainpipes, next month, just to be sure…