Revision with a Bio.

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! >:)
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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!

And Time Marches On Again....

Quite a day today especially when I got a letter from Atos informing me that one of the Specialists in my case, The 'ENT Guy' *Still* hadn't replied to their request for information!! I phoned said specialist's secretary and no sooner than I said my name, I got a hurried "yes, we have the report here and all it needs is to be signed." I reminded her that I am actually very close to losing my home and that I hope to God I'll get some sort of award off them. I've had my last dismissal pay and the cash runs dry in about 2-3 weeks, still trying to pluck up the courage to go in to our local branch of Santander to tell 'em we very likely won't be able to make the August payment!

Also today between 100,000 to 200,000 (depending on who you believe, the Govt. figures or that of the particpating Unions) teachers and other public sector workers went on strike over the recent proposed changes in pensions. Normally I'm not one for strike action but in this case I support the lot of them mostly due to this Government's total disregard on previous agreements to do with retirement ages.

In recent years anyone joining a revised public sector retirement scheme, and please note folks public sector workers do have to join and contribute else they don't get a pension and always has been that way, since 2008 the age for retirement for both genders has been moved to 65. Anyone on a scheme before that coming within 2 years of retiring kept to the same age. There was supposed to be a 15 year time limit to accomodate the change and anyone retiring after 2016 would do so at 65+. Anyone retiring before that could do so at the ages set on earlier pension schemes.

Whilst I'm all for equality, it does beg the question why pension scheme companies and employers (in this case the UK Govt. and various departments run out of Whitehall) are then happy to completely break a contract and drag everything forward by 10 years or more. Now anyone winding down over the next 18 months, mostly women who have earned less anyway, has to undo all the arrangements and somehow find the wherewithal to work for longer and get less as a result. If we as employees broke our contracts willy-nilly we would all be rightfully sacked!

This also poses other questions. What as in my case and that of others, will happen if you have to retire early on ill health grounds? How does that get effected? What if you are no longer fit or able to do your work in your 30's, 40's or 50's yet have still contributed to a pension whether public sector or private? What happens then? I would love to know because not everyone can and will make it to 65. We might be living a year or two longer overall but that does not mean fitter.

Here's a link sumerising reasons for the strike from the BBC website.
http://www.bbc.co.uk/news/uk-13791255

I'm 50 now and do not expect to reach much past my 60's or early 70's in terms of remaining lifespan, not in the least because try as I might I have a problem with obesity and am caught in that catch 22 situation of because I feel unsteady and fatigued, exercise is difficult and not terribly consistent so then I feel even more tired and fatigued. Chuck in the menopause and we're talking real problems. I can promise you I do *NOT* stuff my face all day, far from it but reckon I would have to eat less than a mouse before I could lose a single ounce! But that's another topic for now.

Brain Tumour wise, there's not much in the news except for those of us who are patients at Derriford Hospital in Plymouth have heard the news that over 205 jobs have to be shelved. A friend of mine who is receiving treatment for a pituitary tumour came back today and says the nursing staff are in shock. And I can promise you it will get much, much worse as there will be less staff trying to do more work and will not cope. Of course then they will get the blame for not being 'productive enough' and when standards will eventually flop even further as a result.

I read some opinions over that the Brain Tumour UK site of those who were quizzed about the idea of G.P's taking over most of the commissioning of services. The overall opinion that is it would not help as GP's still remain woefully slow in getting referrals done for MRI scans for those with neurological symptoms, often leaving that part very late in the day. The 'post code lottery' on the variable quality of treatments came up too with post op care ranging from immediate and continuing MRI scanning being done to map effectiveness of treatment in some areas, to others being left for 2-4 months as it was considered not to be of 'any value'.

Another friend of mine who had a neck cancer felt forced to look elsewhere out of Cornwall for her care too. She is a Regsitered Nurse and was not impressed with the local oncology service (surgical) and referred herself to Christie's Hospital in Manchester, a world renowned centre for cancer care. Apparently her local specialist did not like that and there was much to be had in the way of professional jealousy. But I am very happy to report that she has been given the all clear none the less.

But the problem is, for most it takes energy and determination to fight and stand your ground, energy that most simply do not have, plus I still have to acknowledge that I am no expert with my brain tumour so have to at some point trust those in charge of my care. It's still small and not deadly, but that could all change very quickly and I worry about what will happen if and when it does, as I still feel I have been dismissed out of hand as it is still classed as 'incidental and asymptomatic' even though I still get vertigo 16 months later after I initially collapsed at work.

As said before, I may not be dying and really am not too unwell at present, but at the end of the day the vertigo alone has still cost me my job and a career that would be very hard to get back and I really doubt anyone would employ me with my medical history. However I'm not even sure I would want to return to being a practicing Registered Nurse now anyway due to the changes in the NHS. It would be far too stressful even if I were fit enough to work back in a clinical area again.

Right, that's enough moaning from me. Here's hoping someone will actually read this and leave a comment! ;)