I had better start this one with my bio, which got lost when I revamped this page!
Name: Heather Taylor-Nicholson
Tumour Type: - Petrous Meningioma also described as tentorial and sited at the base of the right cerebellar pontine angle.
Grade: 1 (' benign')
Bio - I'm a 51 year old who was diagnosed with having a 'benign' meningioma within the last two years (Nov 5th 2010) during investigations for vertigo that had caused me to collapse at work in April 2010. I have been told that this is only 'incidental' and probably not the cause for the vertigo by Neurosurgeon. However, no other diagnosis has been offered apart from 'poor vestibular return' and the only treatment apart from the 'Epley' given by my GP to ease the more acute symptoms, was a booklet on vestibular exercises as I still feel unsteady and have mild balance issues. That was back in 2010.
Sadly though, whatever the cause I have lost my job as a Staff Nurse at our local hospital as I am not fit nor safe enough to work in any clinical areas, and have subsequently had to let my registration lapse as for the same reasons. I am currently unemployed and hoping to God I can get my NHS pension early on grounds of ill health, otherwise I lose my home. Right now I am going through the nightmare of having to deal with benefits claims etc which is not fun as most of you here will know. Since writing this, I have indeed been award the teir 1 lower rate pension on the grounds I can no longer work in my current employment. I also am able to have contributions related Employment Support Allownce which will stop next year, regardless of my health. I am also applying for a higher rate of Disability Living Allowance. I have enough from my pension to cover all but the energy bills, which are very kindly being paid for my other family.
I'm not sure what it is my blog can add but I hope it will be insightful to those who read it and who do not mind a cynical 50 year old ex-healthcare professional having a major rant..LOL!! I also run a Facebook page called 'Cornwall Headliners Brain Tumour Support Page' as there is nothing in Cornwall in the way of local support groups. I feel that we are the 'forgotten' county in terms of support and treatment options, especially with aftercare and support for those recovering from treatment. However please feel free to visit and share your experiences. Since writing this, there has been a small support group funded by the charity 'Hammer Out (Brain tumours) and they have come together for 2 meetings so far.
So since then, I have finally started treatment for the Petit Mal seizures but had to come off the Carbemazepine (Tegretol) as I had a bad reaction. Those who speak 'medical' will know the term Urticaria i.e a big bad very itchy rash! So now I'm titrating on Lemotrigine which suits me better, so apart from the odd fleeting 'spaced out' feeling I get now and then, I haven't had a reoccurance of the more severe loss of awareness back hole I tumbled down for a few minutes while thinking I was dying, only to wake up with an ashen face and stupidly high blood pressure!
Anyway, here's todays Facebook blast from the past offering.
On my MRI Scan pictures.
FB Friend - Woo - you have eyeballs!
Me - Yeah, poor Dave was freaked out by them as they reminded him of pickled onions on sticks...LOL!!! But hey, there's conclusive proof positive now I have a brain!! :D
FB Friend - s it affecting your eyesight? It looks like it's pretty close to there and/or our nose.
FB Friend - "your" nose. D'Oh!
Me - Not really as yet although I have become more long sighted (most likely due to my age!). What surpises me is how much it is compressing on the Pons and I am sure the intercranial pressure is well raised because of it. It is more my balance perception and now of course, seizures that are the main changes. Although the Neurosurgeon thinks the tumour is not the reason for either, I have a neurologist who finds that a little odd to say the least. But I am also lucky I don't get headaches that often but can be a little nausious at times. I think the fatigue and the disorientation are the two main daily things that effect me most for now. But I can see why there's a huge reluctance to operate due to where the thing is growing.
FB Friend - Just had a read of http://www.brainandspine.org.uk/helpline/information_sheets/meningioma/index.html - is it one of those types? They all look like they'd be very handy for Scrabble. (Not in any way trying to make fun here, just that it's an automatic reaction to something that sounds like it must be horribly scary for you).
Me - Yup, that's pretty much what I have, although some meningiomas can be malignant. I have the Petrous tenormal cerebellar pontine angle sort (more to the back between the cerebellum and cerebrum, close to the base of the skull) which can and does damage to the trigeminal, optic, auditory nerves and what can happen is also compress the Pons, a part of the brain where all the sensory nerves come out of.
And yes, I think you would score big on a scabble game...LOL!! Let me know if you actually get to use it :D
FB Friend - I am sooo never playing you at Scrabble. I thought I had a darn good vocabulary til I started reading that lot!
Me - Hah! You just wait until you get to the cerebral ventricles and all the nerves! >:)
So there you go for now. Oh, btw I have another scan due on the 24th February and I DON'T have to travel to Derriford for that one, just to Treliske Hospital in Truro. Better to have a 72 mile round trip than a 200 mile one. I also started Slimming World last week because I am tired of being a 20 stone walrus. I have lost 7 lbs in my first week! We'll see how that does.
I'm still going ahead with the head shave and have started to hand out sponsor forms. I've also had a great respons to my www.justgiving.com/heather-ann-taylor-nicholson page that I have set up so those who want to can donate to Brain Tumour UK via that site, However I will still need donations for Meningioma UK as they do not have a justgiving page. Whatever the final amount raised, I am hoping for a good response. I've alerady heard from Brain Tumour UK and they will be featuring this event in their next news letter.
Two other charities worth looking at are Hammer Out Brain Tumours, who are based in Gloucester (near to where I grew up!) and who run support groups for BT sufferers, one of which has been recently started in Cornwall, hopefully meeting monthly at Mount Edgecombe hospice in St Austell. there are plans to start up another HO group nearer to me at St Jumlia's Hospice at St Michael's hospital in Hayle, but this will probably depend on demand and time. Anyway, I have found it helpful to say the least. the other is the Meg Jones Brain Cancer Charity, otherwise known as Brainstrust. They also fund raise for support and research, plus for BT sufferers and anyone affected by a BT, they have a fantastic support pack they will send out in request. I had mine delivered earlier and it contains a book 'Living with Brain Tumours', a boix of tea bags (given to my hubby since I don't drink tea!), posters a diary/log book you can use to map your journey, a stress ball shaped like a brain (pink!) which I found hilarious, a flower shaped roundel of highligher pens, several leaflets and posters. This I think will be very helpful for those starting out on their journey so will push that on FB.
But right now,time for bed!
Watch this space!