You may remember I finished my chemotherapy treatment at the beginning of August and was meant to be looking forward to a period of feeling better however short-lived. As it was it just didn't happen and what followed was weeks of misery frankly, interspersed with tolerable days, many of which were spent in France.
My first trip back to the Clinic after chemo had finished I waited to find out 'how I was doing'. This suggests that the medics know and I don't. That's why we go to the doctor's to see what's wrong. We know (very few of us are hypercondriacs, GP's the world over please note). We know something's wrong, we rarely have the language to express it; so if it doesn't 'present' itself physically, it can go unrecognised. I'll come back to this rant later.
I didn't feel as well as I'd hoped but the usual tests were taken and nothing much was said.
Three weeks later I returned for more tests and had a similar experience. I explained I didn't feel as well as I'd hoped. (Nine weeks have now passed since my last chemotherapy treatment).
I was told that they have to monitor me for a full nine weeks off chemo (i.e. 12 weeks since last treatment, sorry, complicated I know). I told them I didn't feel good. They told me they needed another three weeks before they would take any action. I told them if I didn't have cancer I would be camping out in A&E for an explanation. They told me they needed another three weeks before they would take any action.
I went away and experienced 21 days of abject misery and fear (pain, aches, weakness, hot and cold sweats, sleeping around 18 hours per day. But hey, it was only (another) 21 days.
On their 'Week 9' I was beside myself. I walked into the clinic and when asked how I was I couldn't be anything better than sarcastic to this team of people who try incredibly hard to keep me alive. I think my response was along the lines of 'I feel shit but you tell me, you're in charge' and cried a a lot.
They sent me for a CT scan, mammogram and ultrasound and promised to get back to me by the end of the week, acknowledging that waiting wasn't good for me (hellooooooooo?). In copies of correspondence flying between clinics, hospitals and surgery I noted the following:
"for much of this year Carolyn has seemed in fairly good spirits but it is clear that recent worrying developments have taken quite a substantial psychological toll..."
No shit Sherlock. It's not the recent sickness, it's the relaxed, let's wait nine weeks that took the psychological toll, ho hum.
My favourite question was 'Do you feel worse/weaker/in more pain than last time' like I have a riding scale; oh yes, I'm 2% worse - no I feel shit. Shit. There's no good to feeling shit, it's shit. (Sorry Mum & Dad, potty mouth daughter).
After that things happened quickly; crucially they discovered why I felt so lousy (although I could've told them in August things weren't cock-a-hoop) so in November they took me off superdrug Herceptin and acknowledged it wasn't working. This is a bummer as this is recognised as a drug that will significantly extend your life. It's OK though, whilst having the mammo and ultra-sound the radiographer Dr G who is fab, explained that lots of people live for years without Herceptin too. A comment to her, a massive shining beacon of hope for me.
Over the next couple of weeks three really important things were said to me and I list them here in no particular order as they are each crucial to me:
"The cancer's got out of control"
This from my Oncologist ringing with the test results. AB stood in front of me physically shaking - your blogger felt relief at a diagnosis, the fear and shock was to be experienced by everyone around me.
"The medical profession has failed you at this time"
This from one of my hospice nurses, who I'd been speaking to for the last few weeks. She was initially setting to discharge me from the hospice as the expectation was I'd be able to go away and live my life for a few months/years ho ho. In hindsight she apologised (and had no need to) for not intervening sooner.
"You know your body better than we do"
This from one of my oncology nurses. 'nuff said. I later asked her how to get 'attention' without loosing my dignity. She was surprised, she didn't feel I'd lost my dignity. I said I thought walking into someone else's place of work, crying and speaking fairly bluntly was undignified. Good Lord, how low is the standard of patient behaviour in private clinics these days ;-)
There's two things at play here; firstly, the power of suggestion. An oncology team won't tell you what to expect, or even acknowledge what you're experiencing until they have the facts; everything can be explained in another way. My constant hot flushes were explained as menopause, despite me having experienced menopause three years ago (brought on early by the first lot of chemo; there's a big upside apart from the obvious, no more PMT/PMS either!).
AB was given some valuable advice early on 'Be Assertive'. Thoughout my life I've struggled with the fine line that is assertion, I generally fly from passive to aggressive without stopping to consider feelings or consequences. This isn't helpful behaviour anywhere but is potentially dangerous in a medical situation. I kept saying I'd been through menopause, I kept being told I'm 45, of course it's menopause. I knew it wasn't (hot flushes are advanced cancer symptons).
The second thing, has gone. Chemo addles your brain and I can't remember the second point, I'll come back to it when I do...
So, I've started a new load of chemotherapy and a new life extending drug called Lapatinib. All are taken orally, rather than intravenously. As with everything, swings and roundabouts. I'm no longer married to three weekly hospital appoints (they're four weekly now as I have to have a monthly bone strengthening infusion). Rather than having a massive dose of chemo and then having three weeks to recover, I take around 30 individual tablets per day every day for 2 weeks then reduce them to about 12 a day for one week; this is called the 'rest period'. Rather than 'react' to my regime, I have to 'pro-act' which means remembering what to take when, when to eat, etc.
For the first time ever, I have been physically sick with the chemo. The joy of being sick is it (like cancer) respects no bounds. So what that you're out shopping in the middle of town, if you're well enough to shop, you're well enough to vomit. Happy days and thanks for ever to Emma in Marks & Spencers in Bath for getting me a chair, glass of water, sympathy and calm (I wrote a poem to the manager by way of thanks although I'm no poet...)
Five days into my new regime I experienced so many side effects it was agreed to take me off everything and let my body settle. I won't go into how hard it was to achieve this, the above tells you nothing's simple just now.
Two days after coming off everything I woke up with something I've not had for well over a year. Energy. And, I woke up, eyes open, wide awake. This happened for five consecutive days. Dear Reader, from 4 to 7 December 2010 I was a bit like you (without the hangover maybe ;)
The downside of the energy (for there has to be) was lack of sleep - I was absolutely hyper and couldn't read as I couldn't keep my brain calm enough. The answer was to hand-write, so I've filled up a journal with my nocturnal musings on everything from having cancer, having a diverse group of peeps in my life to having an overactive brain switched on for days on end.
My sleep patterns still screwed but am now back on the medication so fighting sleep in the day and writing lots at night again, ho hum.
Meanwhile, based on the above statement about the psychological toll this is taking, I'm seeing a Consultant Clinical Psychologist; he asked me my objective. I said, I just want to know in my own head if this whole thing was preventable; it sure as hell feels like it should have been. I want to know what happened, one day in another century when my internal power supply flickered.