Another good day! :D

This a copy of my entry in to Facebook today, It says it all really! :)

Wow! £240 raised already via my justgiving.com page! Btw my knee is improving, I can weight bear on it although still hobbling and chewing ibuprofen! Also discovering the joys of a sore head if one overscrapes with the razor! Been slapping Aloe Vera gel on which is very soothing but even when it dries, it leaves my head feeling as it's damp! Keep spreading the word!

*Hugs* again to all of you for your lovely messages of support and of course, your donations! ♥ ♥ ♥

Facebook Friend No. 1 - Shea butter's really good. I use this one after shaving my legs, even though it's sold as hand cream. Looks expensive but a tiny bit goes a long way. https://www.lush.co.uk/product/187/Handy-Gurugu-Hand-Cream
Handy Gurugu Hand Cream
www.lush.co.uk

Facebook Friend No. 2 ouchers... especially the sore head from razor x

Me - (To Facebook Friend No. 1) Didn't think about that. I have some Bodyshop Shea butter stashed away somewhere around here. The Aloe Vera does soothe very quickly though but the Shea will be a good moisturiser. Bald head or no, dandruff will still be a problem for a bit...LOL!

Me - (To Facebook Friend No. 1) Yeah, I knida thought I had better ease off a bit when I felt my head almost catch fire...LOL!! I'm having a tough job trying to find a suitable razor that doesn't cost the same as my house! The disposable ones are ok but I find the tiny little narrow ones are useless! You have to shave in little scrapes otherwise the blade just passes over the stubble.

Anyway, I've remembered how to add piccys, so below are some of the day itself!

The gorgeous chap in the *ahem* 'aquired' blue scrubs, is my darling husband Dave. :)

Day after the Storm!

Hi all,

Have awoken with all aches and pains this morning. Unfortunately, I had a tumble last night at home injuring my left knee. I've twisted it which means I've pulled some ligaments and am now hobbling for the moment. So quiet day today and staying off that leg as much as possible! Another £10 was donated online last night, bringing the total so far for Brain Tumour UK to £220. I've got £77 in cash at home with hopefully more coming in sponsorship over the next month. The cash donations will be going to Meningioma UK.

A newly shaved head feels weird, as if I have a wet cap on my head! I did the last bit of the shave last night, getting rid of the remaining stubble and must remember to do this every couple of days or so, after a shower preferably, so the scalp won't be too irritated. I have some Aloe Vera gel from the local 'Holland and Barratts' and put some on last night. I have Nivea moisturiser as well as a 'Dalek' woolly hat made by a friend in the USA to keep my head warm.

So not much to say at the moment. I'll find somewhere to upload the piccys of the shave as I can't seem to include them into the body of this entry. Or I might try to copy and paste from my Facebook page. We'll see how that goes.

www.justgiving.com/heather-ann-taylor-nicholson for my Just Giving page where donations will go to Brain Tumour UK.

Brain Tumour UK at www.braintumouruk.org.uk

Meningioma UK at www.meningiomauk.org

I've been scalped!

Well we finally got it done! My dear husband Dave showed his courage colours today by cutting and then clipping my hair as far as he could down to the scalp. He did try to finish off the shave but the razors I bought were really next to useless! It did attract a fair amount of attention but sadly those who were supposed to show and give support did not arrive. I guess they were all busy.

Anyway, the London Inn is a pub that is situated at the bottom end of Causeway Head and holds a lot of history for Dave and I. It's where he proposed to me for a start 25 years ago! The landlady very kindly offered the pub as a venue and put on sandwiches and some quiche for snacks. As I am on a Slimming World plan I kept to 4 ham sandwiches, cherry tomatoes and lettuce! The regulars in there joined in with one called Major asking Dave for a crop as well! Dave duly obliged him after my shave.

An interesting point to the afternoon were two young women who had no idea what was happening and looked horrified at what was unfolding in front of them. The looks of horror and disbelief soon gave way to facination as my grey hair came off my head in piles. Dave did a fantastic job but the final shave with a razor and shaving gel didn't go quite according to plan, as the single use razors didn't seem to be making a dent on the left over bristle. One of the other customers who had worked as a hair dresser helped out a little later, showing her prowess with electric clippers and managed to get a closer cut. I will try to get a closer shave later as maybe the head needs to be wetter, so the stubble can be shaved off more easily. This I'll have to try and do as I can feel how close the razor is for starters. Dave was a bit worried that he might hurt me. But God Bless that man because there wasn't even so much as a microscopic nick to the skin! Not bad at all for someone before today, hadn't shaved anything but the skin around his 'tache!

I decided to have a bit of fun as well, so dressed up to look like the comedian Al Murray's character 'The Pub Landlord' which added to my very 'East'enner's' appearance. It is a bit unsettling though to see how masculine I actually do look!

So far, I have raised over £210 online and hope to match that in cash donations but even if I don't manage to raise another penny, it will have been worth it. But this is only the beginning as I have the whole month of March to keep me pate bald!

Brain Tumour Awareness month, March 2012 in the UK. Please continue to show your support *Hugs*.

Newsworthy...

Made the local newspaper recently about my proposed head shave due to take place this Thursday (1st March 2012)

http://www.thisiscornwall.co.uk/Heather-s-going-bald-headed-charity-venture/story-15244294-detail/story.html

Heather's going bald-headed at charity venture
Trusted article source icon
Thursday, February 16, 2012
Profile image for The Cornishman

The Cornishman

A FORMER nurse diagnosed with a brain tumour is taking part in a hair-raising event to raise awareness of the condition and its effect on sufferers.

Heather Taylor-Nicholson had to give up a 32-year nursing career after the benign growth was discovered 15 months ago.

Now she is allowing husband David to shave off her shoulder-length hair to raise money for the charities Brain Tumour UK and Meningioma UK.

"The diagnosis had a devastating effect on my life," said Mrs Taylor-Nicholson, 51, from Penzance.

She now has to battle mobility problems and seizures, walks with a stick and endures bouts of fatigue.

"Going out can be terrifying, especially with crowds, with people rushing around you or who don't seem to know you're there," she said.

"My biggest fear is that I'll fall on someone – children especially – or be knocked down, as I can't move out of the way quickly. I have to think about every step, every action and be constantly aware of my surroundings, which is both exhausting and depressing."

One of the main reasons for the head-shave is to highlight the fallout a tumour can have on a person's whole life.

Mrs Taylor-Nicholson has vowed to keep her head shaved throughout March, Brain Tumour Awareness Month.

"As anyone with a chronic, long-term or critical illness will tell you, often the impact an illness can have on day-to-day living and expenses can be every bit as devastating as the illness itself," she said.

"Some will be treated successfully fairly quickly but most will have a long-drawn- out experience of anxiety, frustration, impact on family life and employment, having to battle for financial support in the form of benefits, as well as the travel involved if they're not near a neuro-oncology centre."

She is due to undergo another MRI scan at the end of February to see if there are any changes to the meningioma and whether treatment needs to be started.

The head-shave is set to take place on Thursday, March 1, at 3pm at the London Inn, Causewayhead, Penzance, where her husband is a regular.

For more information and to support Mrs Taylor-Nicholson, visit the website www.braintumouruk.org.uk or her Just Giving fundraising page which can be found at www.justgiving.com/heather-ann-taylor-nicholson

Sponsor forms are also available at the Market Plaice Fish Bar, the Farmer's Arms and the London Inn, all in Causewayhead.

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! >:)
***************************

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!

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! ;-)

*Hugs*

HeatherXX"

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! ;-)

I'm Going Bald in March 2011!!!!

This I've posted around various blogs etc.

"As most of you know I have a brain tumour that basically helped lose me my job and career. Since then I'm turning in to a bit of an activist and run my own Facebook page in an attempt to get some support group going somewhere in Cornwall where I live, because the nearest one is in Exeter 140 miles away!

There is also a woeful lack of information and awareness about brain tumours in general and their effects. I have been networking with loads of people who, not only have lost their health, or loved ones, but also their jobs, homes and ability to fend for themselves. There is very little support out there and most sufferers, unless terminally ill, find themselves being rejected left, right and centre for benefits, help with disabilities etc and have to fight for help when they feel so tired and ill.

I'm lucky. My family, friends and church are supporting me right now and I at least will have a small pension starting in a month two, since retiring from nursing on the grounds of ill health. Not many have that to fall back on.

Research is sparse and I am convinced that the UK lags very badly behind in terms of knowledge, prompt treatment, pre and post op care and research, of which only 0.1% of cancer funds are allocated towards. We do have 11 specialist treatment centres in the UK but they are at risk from the UK Government's 'austerity measures' and could face having to reduce their services.

So I'm going to do my bit by raising funds for two UK charities, Brain Tumour UK and Meningioma UK (A meningioma is a tumour that is usually benign but starts to compress the brain or spinal cord as it grows. That's the type I have and it is situated at the base of my skull near a place called the Pons.) two of quite a number of charities and groups that usually for most are their only means of support and understanding.

My way of raising funds?

March in the UK is Brain Tumour Awareness month, so I am going to have my head shaved on March 1st or as close to it as possible and will remain bald for the whole month! I am encouraging anyone who can to either email me for a sponsor form and try to get sponsors for either the head shaving and/or each day I remain bald. For Brain Tumour UK, you can directly donate your sponsorship via my page at http://www.justgiving.com/Heather-Ann-Taylor-Nicholson where the funds will go directly to the Brain Tumour UK charity. Meningioma UK isn't registered there so will have to be funded by cash donations that I can forward to them by cheque."

Spread the word folks!

HeatherXXXXXXXXXXXXXXX