Up and down, up and down – damn that emotional rollercoaster

So, last Wednesday I finally got the call I’d been waiting for to say the insurance company had approved my treatment. There was a brief moment of joy which was accompanied by an embarrassing ‘happy dance’ on the way back from the school run. My boys looked at me as though I were a lunatic but being lovely little boys they quickly joined in.

Frustratingly the relief was very quickly undermined by a chat to the insurance company where I discovered that they’d only approved the initial four doses of the combination treatment plus a CT scan. They didn’t appear to know about the on-going maintenance dose of Nivolumab that follows the four doses of the combo, they put a limit on the amount they’d pay my consultant, there was no mention of who pays if I am admitted to the hospital with side-effects. I called my nurse, I emailed my doctors, I spoke to my doctor’s PA, I spoke to the insurance company again and eventually I was offered enough reassurances to calm down. All was looking pretty good although the hospital did seem slightly baffled by the offer that had been made. Thankfully it looked like the situation was solid enough for me to be able to start treatment on Monday. I spent a very sleepless weekend worrying about potential side effects and in the moments when I slept I dreamt about hospitals but by Monday morning I was ready and pretty keen to get those toxic, miracle drugs back into my veins and doing their magic. I was also keen to just be a patient and not to have to be chasing, nagging, emailing, phoning to make sure everything was as it should be. It’s pretty shit having to live with cancer but all the additional complications that have materialised in the last few weeks just make it that bit worse.

Monday did not go as planned. I successfully got my bloods done, I chatted with several other patients who I know from my online support group who are also Marsden patients and then I went in to see the doctor. This is when it all went a bit wrong. I haven’t actually met up with this particular doctor since I signed up for the trial in September 2013 – and so it was odd to be meeting him again now. It was very obvious straight away that there was a hitch and after some discussion it turned out that he was not happy for me to start the first phase of the trial until the insurance company had approved the full treatment. I met with him half an hour before I was due to start treatment and it simply hadn’t occurred to me that anything was going to get in the way of that so the discussion came as quite a shock. His argument made perfect sense and in that it was going to be him who was going to need to sort things out with the insurance company I had to accept his advice that I ought not to start treatment that day. I was phenomenally disappointed. Not just because I couldn’t get started but because it inevitably meant more waiting and I feel like I’ve spent the whole of January waiting and it’s just very very hard. I also couldn’t face the thought of having of making more calls, sending more emails and generally having to nag everyone to get things moving.

However, I clearly had no choice and just in case I wasn’t already stressed enough he told me that it was protocol for me to have a brain MRI. Again, the reasoning made perfect sense. Melanoma is a sneaky bugger and it likes to travel and one of the places it seems to particularly like is the brain. My doctor explained that it’s simply better to know as it can really help with the management of side effects, steroids etc to be aware of what’s happening in my head. This is all very sensible and logical but the thought of tumours in my brain absolutely terrifies me. Of course it does – it’s terrifying. I’ve had to get over my hatred of having cancer growing around my liver but the brain thing – wow, that a whole other level of scary. Again, however, I obviously couldn’t say no.

So, today two things happened. Firstly, I got a call from my nurse to say that the insurance company had approved both the first four doses of the combo and the on-going Nivolumab treatment. This was brilliant news. I’m also relieved that the doctors have dealt directly with the insurance company and hopefully I can now leave all of that side of things in their capable hands. The second thing was the brain MRI. I won’t be getting the results until Monday and that I really don’t mind. I really, really don’t want to know and I’m scared that this will scupper the new plan for me to start treatment next week. I am, however, pleased to have got the actual scan out of the way. I’ve only ever had one MRI scan (unlike the countless CT scans) and so was pretty nervous. I got called through, had to get changed into a gown, and have a cannula fitted and then found myself sitting in a little waiting room with a selection of really oddly dressed people. There was an older man wearing a t-shirt and boxer shorts, a woman wearing just a gown and her ankle boots and then me with ridiculously long socks, very large jumper and a gown over the top – we must have looked quite spectacular.

There was a fair bit of waiting before I went through to the scanner but when my time finally came I kept reminding myself that I just had to be brave and not panic. I get pretty claustrophobic. As a teenager I refused to go pot-holing on a geography field trip as I couldn’t face the though of having to squeeze through a gap in the rocks that I wouldn’t be able to swiftly return through. So the though of lying in a fairly tight tube with a guard over my face did unnerve me. Thankfully, the radiographer and nurses were extremely kind. They made sure I was comfortable and I found that as long as I closed my eyes throughout the whole thing I could pretend that I wasn’t essentially trapped. I’d been told it would take about half an hour so I counted very slowly throughout. I was trying to count the minutes but thankfully I kept getting distracted and counting very slowly and so the end of the scan came sooner than I’d anticipated. So, in a funny kind of way – today has been a good day. I once again have a plan (I’ll believe it when it happens), I don’t’ have to chase or nag and the MRI scan is done…….. all I can do is hope there’s nothing untoward going on in my brain and I might actually be able to start treatment on Monday. I can simply be a patient again. I found a lucky penny on the way to the hospital today – I hope that helps…..



Up and down, up and down – damn that emotional rollercoaster

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