Sunday, 23 October 2011

A Conversation With Paula

To Paula, (A G.P. in Cornwall who worked with me in the past.)

"Hi Paula - I'm not too bad. Got to visit my GP tomorrow and get started either on carbamazepine or lamotigrine as a precaution, even though I've only had (what I can recall at any rate) 4 petit mal type seizures in the previous 12 months, where I have dozed off, woken up to find I can't move or open my eyes, feeling like the world is dropping out of my body but always with a very weird thought, sensation, deja-va or odd taste in my mouth, then recover to find I am white as a sheet with my blood pressure up in the stratosphere somewhere! So it's gonna be free prescriptions for me from now on!!! Yaaay! ;-)

My next MRI will be due around January/Feb and will have to go up to have them done at Derriford most likely, although why this has to be there I'm not sure because they've got exactly the same old clunker as they do at Treliske. Never mind! Still waiting for me bleedin' pension to turn up as well (Three months they said. I lost my job back in March!!) so am scrounging off friends and family alike, as well as the govt, of course, so will be wearing my 'Hated By the Daily Mail' badge with pride!

I seem to be turning in to a bit of a BT activist as well and have a few plots, ideas to raise some cash - such as going bald for the whole of March next year! I have another Facebook page called 'Cornwall Headliners Brain Tumour Support Page' should anyone be interested but there are plenty of support groups on FB anyway.

Oh, your surgery might be interested to know that Hammer Out, a charity supporting brain tumour affected people, their carers, families etc are starting support groups in Cornwall. I've just got some bumpf from them and the first meetings will be at Mount Edgecombe Hospice, Porthpean Road, St Austell on Tuesday 8th November, then Tuesday 6th December both at 10.30am - 12pm. I think they will also welcome carers and health care professionals. I've got to copy and get the fliers to the surgeries here and dot some about in other places. If you are interested, I could email your surgery with copies attached? But I need to know where to send them. There are plans to start a support group in Hayle next year as well, which I presume will be at St Michael's somewhere.

Congrats on mummyhood btw :) Two little charmers eh! Your area sounds a nice place to be but yeah, I can imagine it's busy as heck! Certainly a few extra limbs, eyes, ears and a TARDIS to manage the lack of time would always be handy as well I suspect!

Right, off to bed! Lovely to hear from you and give yer lads a hug on the behalf of a mad woman who likes dressing up as a klingon and an ape! They'll never believe it! ;-)



To update. I've been having these little 'fainty spells' as described in the message above. Since I am being treated for hypertension, I put it down to syncope due to a sudden fall in my blood pressure. Because they were infrequent, I didn't make anything of it at first because they lasted for a few minutes and I always recovered quickly. But on the last 2 occasions, I remembered to check my blood pressure and had rocketed skywards. Of course having a brain tumour, one should always report new or odd things going on.

My problem, ex-healthcare professional or not, is that I am always reluctant to go shooting off to my GP for every bit of squeak or bubble. The last two episodes happened within 24 hours of each other so I had to take notice of that. It seems I have got complex partial seizures going on which means a) thet have been for a while and I've just not noticed them before (could have happened in my sleep). b) the tumour is having a greater impact than previously thought. I've been re assessed by a local neurologist who sent me for an EEG (electric encephalogram) this week. I don't think it will show much, But in any event , I am going to start on epilepsy control drugs for what could be a very long time. Upside to all of this is I can apply for and get free prescriptions! Yaay! ;-)


  1. Hi there new friend! .... I am a Brit living now living in New Zealand and an ex-NHS nurse (retired from NHS 1999 then emigrated!) I too have a meningioma .... do you think we could hold the NHS responsible? (joking!) I was diagnosed in 2008 after complaining to my GP of various symptoms for over 2 years before getting a CT scan. Women over a certain age seem to get the "neurotic" label rather than serious consideration of what they are saying, IMO. Anyway, please feel free to contact me and let off steam if you want to! I also have a blog about my experiences thus far which you may find of interest. Best wishes.

    1. Hi there, sorry to be so long with a reply as I am still having to remember I actually *have* a blog..LOL!! Anyway, nice to meet you Lesly and I hope you are doing ok.

      I should be blogging a bit more regulary here soon as I will be getting my head shaved for the whole of March! I'm doing this to raise money for two BT charities which have been of big help to me, Brain Tumour UK and Meningioma UK. Also I hope to raise awareness about the tough time BT patients have when it comes to getting support when jobs and homes are lost due to their illness being severe or needing a long recovery time. These I'll try to address here.

      And yup, I do wonder if the NHS has a lot to answer for! Quite a few of my colleagues seem to be dropping one wat or another in ther 50's and 60's with health problems which I am sure is stress related.

      Thank you for your invite to have arant as well. :D I am also in Facebook under 'Heather Taylor-Nicholson' or you can visit my other page which is 'Cornwall Headliners Brain Tumour Support Page'. I had set that up because up until December 2011, there was no dedicated BT support group in Cornwall.

      Cath you soon and stay well. :)



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