On Monday 16th February, I received a phone call from Jeanette Tebbutt, Head of Nursing (the Trust website says she's the "Nurse consultant and lead cancer nurse"), to discuss their response to my report, and my on-going involvement (should I wish to do so).
She stated that they were getting the various 'heads of departments' together to coordinate their response and actions. In this context, I was invited to attend a 'leaders meeting' in March to assess progress and to give a 'patient' perspective... I've agreed to get on-board.
This is all quite positive - and Jeanette genuinely sounded keen to take the required action - and get my involvement going-forward. We'll see what happens...
In the meantime, I'm still really struggling with pain management! The on-going battle with high levels of 24/7 pain, is getting the better of me!! Average pain level between 6~7, sometimes rising to 8~9!!
In the last two weeks, I'd commenced trying another drug - Lamictal:
"Lamictal is used to treat epilepsy. People with epilepsy are prone to having periods of uncontrolled electrical activity in the brain. These periods of uncontrolled electrical activity may lead to seizures. Lamictal helps to control electrical activity in the brain. This reduces the chances of having seizures.
Lamictal is also used to treat depressive episodes in people who have bipolar disorder."
http://www.nhs.uk/Medicine-Guides/Pages/MedicineOverview.aspx?condition=Epilepsy&medicine=Lamictal&preparation=Lamictal
Just in case this is confusing, I don't have either epilepsy or bipolar, but the potential ability "to control electrical activity in the brain" is the key thing. Theoretically, this could help me.
Although the dosage started small (25mg per day), it had been gradually building up in my body, to the point where the side-effects have become very obvious to me; including, blurred vision and 'foggy' brain function, as well as periodic increased pain sensations from different parts of the body. Not good at all!!
Consequently, I decided at the end of last week, to cease taking them, before seeking an alternative.
Little did I realise that the withdrawal symptoms would be particularly unpleasant. As a result, I didn't even get up on Sunday (this is most rare) as I simply did not want to move. Any movement, however slight, always induces a 'pain response' - but on Sunday it was particularly bad, so I simply didn't want to move...
A friend pointed out that my symptoms sounded very much like "MS Hug" so I 'googled' it to see what that was all about. And sure enough, the description of some of the sensations were similar, but not the severity or longevity! Anyway, the treatment was basically the same, so I didn't gain much from this knowledge.
I have to remain hopeful that there is an alternative 'tool' left in the toolkit, otherwise I don't know what I'll do... I'm getting desperate for pain relief!! Please God?!