False Evidence Appearing Real: The Fear Of The Unknown

Hello again all. I’ve been absent for a little too long. Mind you, I’ve been absent in my head as well.

I had the appointment with the bone/tissue tumour people on Wednesday and my consultant is lovely. She told me some quite bad news – the tumour that they were once 90% certain was benign, they are now 75% certain is malignant, and she was quite abrupt telling me this but she has since redeemed herself.

I had an open biopsy yesterday. Went under general anaesthetic, they cut my leg open, took some tumourous bone out and some healthy bone and have sent both samples off to histology. I should get the results in 10 days or so. Apparently, I will feel a ‘bit out of sorts’ until I get the results according to the nurse specialist. What a bloody understatement.

I feel shit. I keep bursting into tears and simultaneously biting everyone’s head off. I am neurotic and paranoid that the boyfriend will leave me because he won’t want the hassle. I want to run away from all of this, until it was pointed out to me that what I would be running from I would actually be running away on (i.e. my leg). I’m not sure how you cope and deal with the bleak, uncertain 10 days of waiting to be told whether you have a sarcoma or not. It’s difficult and there is no rule book. I keep saying I can’t do it, and yet everyone tells me I either can or I have no option or I’ll learn. I’m sure they’re all right, I just can’t quite get it sorted in my own head.

On Wednesday after the hospital appointment I got dropped back at school but instead I crossed the road and went into Asda where I bought blades and tablets. I sat in the toilets making cuts on my leg and crying over a pack of co-codamol and a bottle of water. I only didn’t do anything worse because my Mum sent me a text asking if I was OK, whereupon I realised that I should be back at work and not conducting such silliness.

On Thursday I left work at lunchtime after being told to go home because I was dangerous. I couldn’t concentrate or stop crying and was about to mix 2 chemicals together for a lesson that would have killed the entire class if heated. Before I left I cut my leg again and then went home. My Mum realised what I had done and took me to A&E where a lovely doctor sutured me up but insisted on getting the crisis team out who told me that they shouldn’t be seeing me as they don’t accept referrals from people with BPD. Mind you, Newcastle A&E aren’t especially effective at dealing with self-harm/depression/suicide.

Now, I feel stupid. I’m getting myself worked up about something that still has a 1 in 4 chance of being nothing. And 1 in 4 odds have worked for me before (1 in 4 people having a mental health problem).

I just feel neurotic, but then for once in my life I think I am entitled to be.

Ruth

But I Don’t Think That’s A Very Good Idea

Or why psychiatrists should listen carefully to their patient’s requests.

I saw a CPN and psychiatrist from the mental health NHS trust where my parents live this afternoon. This is the third time I have had contact with this particular trust this week.

The first time was on Sunday when I suddenly realised that having stopped taking my meds a few days earlier was a really bad idea after I started hearing a voice that was telling me derogatory things and encouraging me to cut myself and seeing things. I called the Crisis Team who sent someone out to see me, gave me a script for a few days worth of meds and arranged for me to be visited on Monday. Without forgetting of course to tell me that stopping taking my meds when I am prone to lability of moods and psychotic episodes was a “very stupid move” and would only be done by “a very silly girl”.

The CPN I saw on Monday was nice enough, in fact too nice enough. She had nothing about her that I could dislike, even though for some bizarre reason I really really wanted to dislike her. I told her that I haven’t been able to sleep since the beginning of February and I am having very bad nightmares and flashbacks about what happened, particularly at night. I told her that I had spent 5 hours on the phone to my boyfriend the day before sobbing my heart out about how much the rape has affected me and how I am trying to put a brave face on life but I can’t do it for much longer. She just shrugged, told me that nightmares and flashbacks were normal after a traumatic event and I could have some lorazepam if I thought that would do any good and to double the dose of quetiapine. She said she would contact Northumberland, Tyne & Wear NHS to get my notes from my most recent couple of inpatient stays faxed down to them and arrange for a full assessment to be conducted on Wednesday (i.e. today).

Yesterday wasn’t too bad on the whole. I did very little during the day and was absolutely shattered. By 2pm I just wanted to sleep so I took the entire daily allowance of tramacet and a few codeine on top for good measure and slept for a good 5 hours. I then woke up and wanted to go back to sleep again so I sent the boyfriend what could probably be construed as a somewhat alarming text and planned to take some Nytol, codeine, tramacet and co-codamol and snooze. I decided against it in the end and spoke to him at about 11pm last night when he was concerned for me and at 4am this morning when I rang him in a complete state after not being able to even close my eyes without panicking, let alone sleep.

I also saw the acute pain management people at the Chelsea & Westminster yesterday in relation to the almost constant pain I suffer through having ankylosing spondylitis and being hypermobile. It was quite a worthwhile visit as the dose of gabapentin I take (for neuropathic pain) has been doubled, I am now taking diclofenac regularly with co-codamol or tramacet to take interchangeably when the pain worsens and have some codeine to top all that off with if the pain becomes totally acute. My GP here in London sent a referral off to a rheumatologist at University College Hospital who specialises in hypermobility as she thinks it is worse than everyone first thought, but the Chelsea & Westminster told me that he is a very busy man and so have cancelled that referral and sent one off to the rheumatology department in Newcastle as I move up there on Saturday.

Today’s appointment with the psychiatrist and CPN was just stupid. Neither of them had to listen to anything I had to say. The psychiatrist decided that the quetiapine wasn’t working and couldn’t see why I had been prescribed that as a first line treatment so has moved me onto olanzapine, must to my utter disgust. I tried to protest the swop as I don’t want to take olanzapine, the concept of a drug that is pretty much guaranteed to cause weight gain scares the freaking hell out of me. When I told him this, he asked me which I thought was more important; my mind and sanity or my figure. I tried to explain that I fall into the bulimic category and was liable to probably become extremely non-compliant with the medication at the first sign of weight gain, but he just told me to stop being melodramatic and threatening him. He also prescribed lorazepam to be taken at night to try and calm me down and to help me get some sleep.

I am insensed that my views have not been taken into consideration. Luckily I am seeing C (the psychiatrist I was under when I was an inpatient in Newcastle) on Tuesday afternoon so will discuss it through with her then. I can’t see that she is going to be too pleased that I have be put on a drug, without her knowledge, that I am not happy about and quite willingly not going to take to avoid the side effects. We’ll wait and see if the proverbial hits the fan next week.

Ruth