Algy's Demise - I Got Stoned and I Missed It...

It's been a few days since Dave and I returned to Penzance. And Boy! They were *not* joking about the side effects, which seemed to get worse a day after radiotherapy was completed.

Dave at the Crown next to the Royal Marsden Hospital

We had a good few days together in London as Dave needed a break too. I've yet to post photos up but the joke will be for every place we visited there will be a piccy of Dave sat in a pub! I think he has seen more of London in the last six days of our stay than he has in a lifetime. Also having to take the bus because I cannot tolerate the underground crowds etc, he has noticed the architecture of buildings, places and whatnot and has enjoyed that immensely. We did take the underground once to an event up in Islington that we very nearly didn't get to because of repairs etc and of course, Algy decided to show his displeasure and I ended up collapsing flat on my back with Dave suddenly understanding the importance of when I say 'I need to stop, eat and rest' I mean it and the consequences of not doing so. Poor man!


As much as I am delighted to be back home, I've have had a bit of a time adjusting and everything appears to be a little different. Of course  Penzance is hated by both County Council and Govt, so half the town is closed, yet there's a bloody great Sainsbury's being constructed where the heliport used to be, which was only supposed to have one floor and trees to obscure the view, that somehow has magically got past that restriction. I hate to say this but I'm getting the impression there'll be a notice going up on the Tesco's roundabout saying 'Penzance - Closed. Go Away. Nothing to See due to Apathy and Self Interest'.  That sounds cynical I know but it's been sad seeing what should be a vibrant coastal town turn in to a dust bowl surrounded by a supermarket hinterland.

Where I collapsed in Islington

I digress. Now, radiotherapy side effects. I was warned that fatigue and possible facial pain would occur as Algy is swelling a bit as the protons do their stuff through him and some surrounding areas. But almost immediately after stopping Dexamethasone - a steroid -  the vertigo is back with a vengeance! Also I still have a terrible craving for sweet food yet can't taste it well, my concentration has gone to pot and I feel spaced out all the time but at least the seizures haven't increased apart from the Islington incident. I find now I dare not leave the house on my own as I am definitely more wobbly on my feet, so need Dave or someone with me so I can grab their arm. That's always been a problem in narrow crowded areas but for a while, sadly, it will be a little worse.

The neuralgic pain is irritating but not screamingly bad. I take a stronger form of co-codamol (solpadine) which has 30mg of codiene with paracetamol rather than the 8mg you can get over the counter, and a drug called Amitriptyline at 25mg which is a sedative but also used to control neural pain. There is another drug commonly used called Carbamazepine but I am highly allergic to that, so will see my GP on Monday as I have only been given a few days worth of the Amitriptyline. I might ask for another type of neural pain killer called Gabapentin, but that's quite a strong drug. We'll see. In any event, the effects of the drugs I am taking now are leaving me ever so slightly stoned! *Hic* ;-)

Everyone will have a slightly different experience with their treatments, recoveries etc because again, it depends on what type tumour, radiotherapy, where and for how long etc. But common to all is fatigue of the type where you are bone weary and sluggish despite sleep, so I am prepared for that. However, I have decided that I must go out for a toddle each day when I can with Dave so I don't literally end up housebound.

I am also noting my behaviour and moods. As some of you know, I do get mood swings and this can be a problem and of course depression is an understandable reaction to all that is going on. There are mental health issues that can occur as a result of the stress from being ill and also physical ones too upon one's thought processes, especially if you're on the menopause! So you're all going to have to be patient but please, feel free to give me a kick up the pants as well because sometimes I need help to get things back into perspective.

Dave at the British Museum

With the above, the secret is I guess, is to get to know how you will be affected and be honest about it. Right now I'm ok while typing this but tomorrow it may be all doom and gloom. There will be swings and roundabouts but because I have been informed about this and have an idea what to expect, I think I will be able to manage this better and know when to seek help if it all gets a bit too much. I am also letting those around me know what could happen so they are prepared too as I already had a flare up over something a few weeks back which resulted in my ripping some family members a new one on Facebook! So now they know now for instance, to keep me in the picture about anything major going on. It was a misunderstanding for sure but also very poor communication on their part too which only got sorted after my Facebook outburst because someone saw my rants and realised trouble was afoot!

I would love to hear from others about their experiences with their treatments, and from family, friends and colleagues who know someone with a brain tumour. You can reply here, email me at madamcod@yahoo.co.uk. or contact me via Facebook (I am Heather Taylor-Nicholson there) or via twitter where I am @braintumourlady.

Right, more drugs needed! Laters!

Algy's Demise - Goin' Home...

Now before you all fall about laughing, yes I am a fan of The Osmond Brothers and a song of theirs has been ringing in my head since I woke up with morning. The chorus especially!

"Goin' home, goin' home, goin' home,
I gotta make it, gonna make it all right.
Goin' home, goin' home, goin' home
If it takes the rest of my life........"

The lyrics sum up the journey so far very well. And it is only so far too as Algy and I will always be together. He might be fried but how effective that will be, no one will know for years yet and he can never be removed unless he decides to ignore six weeks of protons being fired through him, or take in a cousin (2% chance) in the next little while and try to occupy more space. If that happens, at the very least it will not be pleasant because the little bugger is quite close to the brain stem. 

We leave for Penzance tonight at 7pm but will spend the day quietly tidying up, having a last look about the Goldborne Road area where I have been residing these last few weeks, and I'll try not to think too much about the near wiping out of my credit card and overdraft that has occurred. It has been a blast here in London and treatment aside, I have had a great time with being lucky not to be so ill I couldn't get out and about. However, I wonder if the side effects had been worse whether it would have been as much fun?

So this is going to be one of those *huge* long 'Hollywood - overrun - at - the - Oscars - thank you' posts, because there are *so* many to thank, in groups, indiviuals and I *know* I'm gonna forget someone but please if you're not on the list, don't fret. I am *so* grateful to you for making what could have been a dreadful time actually go very well!

*Loud intro and drum roll*!

My grateful thanks to (in no particular order) -

My Darling Dave, My baby bro Trevor, Lowri, Bethan, Nathan, John, Tina, Margaret, Duncan, Anne, Duncan Jr, Peter. Mum & Dad.Anthony and Tricia, Gordon and Gladys
Margie and Robert Hall
Veronica Taylor and The New Freedom Project
Debbie Carter @DebbieCarter14
Sarah Tarmey @tarmeygal1
Claire Siliciano @Science_Fan
Gilly Henwood @Gillyh1
Margo Milne @MargoJMilne
Misa Buckley @MisaBuckely
Claire Bullimore @BrainTumourAunty
Eileen Bullimore @pillionqueeen
Alana Herd @MyMillionToOne  www.mymilliontoone.com
Ben Miller @ActualBenMiller
Philip Ardagh @PhilipArdagh
@DeathinParadise
Gary Carr @iamgarycarr
Elizabeth Bourgine @lizbourgine
Danny John-Jules @DannyJohnJules
Beth Allan @BethAllen
Cappie @Cappiehead
Jo DeLapo @agitator76
Nathalie Martin @NanyLouloute
Sabine @Gracie_22
Steffi @St3ffi_K 
Hils @HilsP
Manuela @manuzanni
Jodie @sunshine_6972
@Whovian__
Kim Agaren @kikiagar
Michaela C @FiveFrogsBlog
Yasmina Sihel @YasminaSihel
Kaz Poole
Cafe Roma
The Crown - Marsden.
Jullie Liddle
Katrina Peirce
Chris and Jenny Smirthwaite
Pearl Ashton @pearlashton
Ann Coles at Hammer Out
Shane and Timothy Spall @pastafa
@HammerOutNews
All at The Royal Marsden, Fulham Road inc Katheryn and all on Lederman.
Mr James Patterson FRSC FRCN
Glad Baldrey RN BSc CNS Neuro-Oncology
Dr Jan Power, Dr Hugh Marshall Rosmellyn Surgery
Shirley Harris, Matron, West Cornwall Hospital
All at West Cornwall Hospital, Penzance
All at Derriford Hospital, Plymouth
All at Hammer Out Brain Tumours
All at Brainstrust
All at Meningioma UK
All at The Brain Tumour Charity
Shaun Skinner
Nick Phillips
Simon Reed @aramblingidiot
Mike Sagar-Fenton
Julian Greenwood-Penny
All at The Cornishman @The|Cornishman
Marilyn King
Jan O Malley
@TeamXander
@RichardOsmanFan
Cameron Yarde Jr. @CameronYardeJr
Alexander Armstrong @XanderArmdstrong
Alison and Dave Trace @aligubbs
Pamela Sutherland @Ltd_To_Two
Poor Old Bird @pooroldbird
S A Meade @kestrelrising
Jon Parker-Saville @FutureGuy75541
Lindsay Pickering and Peter Routley
Andre Haines and Gregory Watters
Rev. Julyan Drew @pronterjools
Chris Steadman @ChrisDSteadman
Susie Tait and the Monday Slimming World group.
Elizabeth Reknowden
Heather Anne Stewart-Gillis
Marla Kaye
Geraint Wyn Davies and Claire Lautier
Bea Quindlen
Susan Doss
Astrid Tanabet
Mary Strowger
Marg Yamanaka
Lee Kennedy
Chris Chell-Czerwinski
Maribel Veal
Gill and David Dodson
Jan Crocker
Roseanna and John Bray
Elizabeth and Eric Bray
The *entire* congregation of The Church of Jesus Christ of Latter-day Saints in Helston, Cornwall for all the cards, pressies, choccy *and* for feeding my C of E hubby Dave!
Wayne Brown @Eroica3
Christina Logan @LoganTinaLogan
Emma @Realsinginmouse
Sophie Hay @pompei79
Lesley Roberts
Marion Pitman
Kerry Endecotte
Dale Who
Sarah Jane
Kathleen Ginieres
Dawn Fidler and Josh @JourneyJoshuas 
Stephen Rodda
Denise Raphael Hopkins
Sarah Clarke @AcSarahAC
Everyone involved at @ArmadaCon

And of course, the whole bleddy population of Penzance!

My time with Algy is far from over, as said before but one thing you can be sure of though. It doesn't matter if you can only send a tweet, wish, word, thought, etc. IT COUNTS! IT HELPS! *ALL* OF IT!! Never let anyone try and tell you otherwise. The fact someone cares enough to make even the smallest of gestures can mean so much. I have been and continue to be so very blessed and lucky during all of this, to be around those who have given me so much support and continue to do so, to encourage, bouy up and give a good kick in the pants when needed. But I am very heartbroken to say that there are those out there who have no one to lean on, who have been all but abandoned by their families and friends who cannot deal with the 'C' word, or the fact the person affeced cannot function as they used to. That happens a lot and it is shameful to say the least.  

For those out in the media, one word, one RT on twitter makes all the difference as well because people *will* and *do* take notice. And if that's just one other person who maybe curious to read further, or who might be finding themselves starting this journey or who are affected by it an any way who can be reached, then it's worth it.

So thank you to everyone from the bottom of my heart. The journey continues and so must I.

Love,

Hev XXXX

Algy's Demise - We're done with the CLINAC

Today has been a day of emotions, tears, laughter, impatience and grateful goodbyes. I have completed my course of radiotherapy at The Royal Marsden and just now have to wait out the side effects which so far is more fatigue, mood swings, post neuralgic pain and sensory changes down the right side of my face than anything else. There will be a follow up phone call with my Clinical Nurse Spcialist, Charlotte in about six weeks but I can contact her sooner if needs be. Letters will be sent to my GP in Penzance and there'll be a follow up MRI scan to be done at The Royal Marsden on 11th December, then yearly after that to check on Algy's progress. Plus I maybe monitored for potential consequences from the radiation itself such as a 2 percent chance of developing a maignacy over 10 years, or problems with my pituitory gland as it is in the path of the radiation.

So that's the medical/physical stuff.

Bang. Done. Dusted...

Yet I'm sat here with a *crazy* dose of the munchies and am feeling quite agitated. As per my last post, this is an emotional journey more than a physical one and I am going to be spending an awful lot of time trying to figure out where to go next with this and what it will mean in the long run.

Certainly, one cannot possibly go through an experience like this and *not* be changed in some way or another, but whether that change is permanent or we then slide back into old routines, attitudes and habits will depend on the individual. We're all different with how we react and deal with life changing moments as we grow and slide along life's often poorly greased and uneven path.

Algy to me has been a bit of a wake up call and a gentle reminder about the fragile state of our own mortality. Now ok, not once has Algy been immediately life threatening but there's always that risk he can become so and of course, anything growing in the confined space of the skull and spine is not a good thing, no matter how slow growing or innocuous it might appear. Tissue becomes compressed and damaged, often perminantely so and sometimes with fatal consequences.

Then of course there's all the other stuff, the social, medical, personal, financial, employment, welfare, self image, relationships, the whole shebang that still hasn't completed it's way through my addled head yet. The impacts of all the above, the potential consequences, the limitations, and maybe the opportunities, I don't know. Each time I blog, I realise that there is so much that has yet to be digested about all of this, so much to be understood in terms of change. An exploration in to an individual 'Undiscovered Country' if you will.

Many wax lyrical I guess about the meaning of life especially with events like this, the closest of which that makes any sense to me would be a la 'Monty Python', as well as my own personal and spiritual leanings - and it seems similar in the fact the Big Eight are involved; birth, growth, masturbation, sex, taxes, relationship/divorce, old age and death - yet for all the commonality of these life events, they can mean so many different things to so many people.

And the same applies to those going through any huge life change, no matter what. With me it's about finding another place to be in terms of usefulness and the future, to someone else it's about relationships and so on.

How's about cultural and social expectations? The cultural expectation of 'having courage' that when before it could have been a compliment to me, now becomes something more patronising, along with ' stay positive and not worrying about the small stuff'. You only have to read my last entry or two here to know my opinions on that! But then someone else will have a different take and I would love to know what others feel about those sentements both as givers and recievers.

It actually was suggested I write a book about my exeriences with Algy by someone who works with one of the charities I (try to) support and I think I would like to give that a go. But putting together a book is vastly different to scrawling in to a blog. My book would (I hope) be informative, humourous, emotional, factual, honest, knowledgeable but not just about me but also others on a similar journey. I would want to have little cartoons of my relationship with Algy, accounts from those who are affected by their condition or someone's expereinces with those they know who are affected by a brain tumour. I want not just a jolly praiseworthy account of a community being brought together to fund raise but also what a pain in the backside it can be to live with someone affected, and also touch on those very difficult questions that have to be faced sometimes when it doesn't go right.

So here's the thing. A call out to those affected in anyway by a brain tumour, whether as a patient, friend, carer, professional, family member, fund raiser, community worker, lover, you name it. I want to write that book and I want to write a book that reflects *our* own personal journeys. Ok, loads are out there in blogs, self help books, text books, professional work, papers and what have you, but I don't often see much from those with brain tumours themselves outside of what you might read in forums and groups. Some are very private and personal stories, a lot of course carry pain, for example the differences say between paediatric (childhood) brain tumours and adult ones, having as a parent/adult to make a choice about treatment that could result in long term damage but which also could give a child a fighting chance to live?

There's also room for humour as well as drama, and yes, I would like to have inserts with 'brain facts' and so build up a picture with my story as part of it, although in a way it'll be a central to a type of written 'Venn Diagram' to which I hope, an honest but empowering account of what being affected by a brain tumour is all about.

So how's about it chaps? Are we in.....?

Meet Jonathan Pope-Mask, my Thermoplastic Gimp Companion..!

Not necessarily my view but some might find meaning with the words below ;-)

The Galaxy Song - Monty Python's Meaning of Life 1983
By and copywright to Eric Idle and John Du Prez.
  

(spoken)
Whenever life gets you down, Mrs. Brown, 
And things seem hard or tough, 
And people are stupid, obnoxious or daft, 
(sung) 
And you feel that you've had quite eno-o-o-o-o-ough, 
 
Just remember that you're standing on a planet that's evolving 
And revolving at 900 miles an hour. 
It's orbiting at 19 miles a second, so it's reckoned, 
The sun that is the source of all our power. 
Now the sun, and you and me, and all the stars that we can see, 
Are moving at a million miles a day, 
In the outer spiral arm, at 40,000 miles an hour, 
Of a galaxy we call the Milky Way. 
 
Our galaxy itself contains a hundred billion stars; 
It's a hundred thousand light-years side to side; 
It bulges in the middle sixteen thousand light-years thick, 
But out by us it's just three thousand light-years wide. 
We're thirty thousand light-years from Galactic Central Point, 
We go 'round every two hundred million years; 
And our galaxy itself is one of millions of billions 
In this amazing and expanding universe. 
 
(waltz) 
 
Our universe itself keeps on expanding and expanding, 
In all of the directions it can whiz; 
As fast as it can go, at the speed of light, you know, 
Twelve million miles a minute and that's the fastest speed there is. 
So remember, when you're feeling very small and insecure, 
How amazingly unlikely is your birth; 
And pray that there's intelligent life somewhere out in space, 
'Cause there's bugger all down here on Earth! 

Algy's Demise - A Painful Epiphany

I've only got three more 'bolts' or doses of radiation to go before I finish next Wednesday (18th Sept) and will be glad to get back to Penzance the week after. But how has this part of my journey gone?

One thing I will be forever grateful for is that I haven't felt really any worse throughout my stay in London. Indeed, I have made the most of my stay with the anticipation I would get worse as time goes on. But so far, no seizures, no hair loss or burns to my scalp. In the last week though, I have started to get more fatigue, more dizziness and disorientation plus much to my chagrin, a damn sight more moody with hot flushes. But that could happen anyway. Goodness knows I'm at the right age and have been peri-menopausal for ages!

What is certain from infomation I have been given, it will be years, possibly up to a decate to see if/how well the radiation has worked, whether Algy will be stopped in his tracks and maybe even shrink. Apparently 50% of tumours (I presume it is the non malignant meningiomas) do shrink after a while but this again may not be visible for a long time.

My journey with Algy still has a long way to go and will be a lifetime one. But from what I have experienced so far is not all negative. There has been a growth of another sort, but I'm not sure what that is yet in terms of personality etc. Certainly one thing I would *love* to do is get some form of a life back in terms of maybe improving skills, the arts, I don't know. I am realistic enough to know it is *highly* unlikely I will ever be considered for paid employment as I have to be realistic about whether I could sustain a job, to be able to give it the time and energy that is needed, whether an employer would risk that. But then, there's not much in Penzance in terms of employment for the young and the fit, never mind a knackered 52 year old ex-nurse with chronic health problems. Any ideas folks on what I can do to while away the hours? I do like showbiz ;-)

So that'll be the next road I suppose, to figure out what I can do for the rest of my life however long that will be. I would love to write for a living, but everyone would and my writing style isn't that fabulous! I would love to work maybe in the media but being a roving reporter would be out. Being 5 foot, overweight, grey hair and if not for the wonderful existence of lady blade razors, would a moustache and beard thicker than Dave's! Maybe local radio? But I speak too fast, have too much of an accent and would spend most of the time talking gibberish.

However, that idea not completely impossible. I was recently interviewed by two wonderful ladies called Eileen and Claire Bullimore for a radio show they host on Thursdays via the internet community radio station Croydon Radio. The first part can be listened to here Brain Tumour Thursday Radio Show interview pt 1 and the second part here Brain Tumour Thursday Radio Show interview pt 2 .Claire is a brain tumour survivor, who like me had a 'benign' meningioma that she had diagnosed after her optician picked up signs on examination, even though she too suffered headaches for years! For this, Claire had surgery which has left her with cognitive and memory difficulties, as well as the usual fatigue, but for all of that, she is a vibrant, lovely young lass who has a great love for Hazelnut Latte!

Claire spent her working life in PR and did try to get back to work after her operation and recovery but could not sustain her ability to do so because of her fatigue and other problems that she had been left with. But rather than do nothing, she along with her lovely mum Eileen, who is a fabulous support (and Claire's carer) the two have become a tour de force for a positive, uplifting attitude towards brain tumours. The proggy is two hours long with great chat, info, guests and music. There's also a 'shoutbox' on the website you can leave messages during the program as well as tweeting via the hash tag #braintumorthursday or via @braintumouraunty. Give it a listen, well worth it. If you can;t catch it when it's on, between 12 - 2pm Thursdays, it's available for podcast the day after and can be found via the Radio Croydon website. So new beginnings can and do happen.

However something happened to me in the last couple of days which has left me feeling cold. I've had another wobble over the last 48 hours down mainly to mis communication and the growing realisation that Ye Olde Midlife Crisis is hitting as well.

To explain. Very sadly, David's uncle died recently in Scotland and plans were made for his ashes to be scattered in Cornwall. No one expected to do this until the new year but all of a sudden Dave's parents got a phone call to say his uncle's wife, daughter and boyfriend were down and the ashes were to be scattered the next day at Prussia Cove. With the flurry of getting there and all of a sudden a post committal dinner, someone forgot to let me know. I in turn had been trying to get a hold of Dave as I was having a rotten day with pain and depression setting in from fatigue. When I did get through I got a 'can't talk now, been scattering Uncle David's ashes and am at a dinner' or somesuch.

Not only did that come as a bit of a shock, I felt I had intruded on something and felt embarrassed. Then I remembered I AM FAMILY! SO WHY WASN'T I TOLD!

In true fashion, I blew my top big time and began to panic as it hit me, if my own husband could be so apparently dismissive of my feelings and need to know, what the hell was I going back home to and started to panic even more.

Now some of you will say maybe no one said anything because they wanted to protect my feelings or what have you. It's nothing of the sort but an actual family curse of poor communication, of when information needs to be given etc. There was an assumption that information had been passed and also a lack of urgency to do that. I also began to feel I had been left out of the loop because well, I'm just not there. That and a world of frustration, pain, disappointment that has built up over many years - for example and I know this is nit picking, my nursing colleagues never even sent a goodbye card when I had to leave on March 2011. The small medical records office where I had been secomded to for the remainder of my employment were kind enough to give a little gift & wished me well. But it still hurts for some reason.

I also started to think of the times in my life I have been excluded or pushed aside, or haven't been confident enough to say 'Oy!', when I have been basically and patronisingly told in various ways I am not 'quite good enough'. A lot of childish resentments came up and I BLEW. Sadly for Dave, he and his family got reamed across Facebook because I had had enough and again I couldn't get a hold of him. And again I panicked. Is this what I want for the rest of my life? Do I just go along with this and accept it? Is is all that I am and mean to those around me? Why was I getting more connection, passion, interest, bigger world view, information, self worth and support from the internet? Why could I not get that from those around me without having to almost beg for it at times? Is my perchance for having a big mouth just a means for getting attention for myself rather than promoting a cause and spreading awareness? What the hell is so wrong with having a big mouth and getting some attention anyway?

Did I really want to go back to this? Is is fair on Dave to be lumbered with an overweight, temperamental old boot who can now grow a beard thicker than his if I let it happen? Why was I never cool enough, clever enough, pretty enough, assertive enough, brave enough? I have been well blessed in life but there has always been a lack of emotional fulfilment along the way I have passively accepted because plain looking girls and women have no right to expect such demands.

To do and be otherwise is vain - which is why Janice Ian's 'At 17' sums up so well how I felt at that age and rightly or wrongly still do now. That was the gender expectation of my Mother's generation which sadly has filtered down to me. In one very horrible blast of clarity I saw that my remaining years would possibly slide into something terribly...empty, too sedate, too dull, redundant and useless. I am and have become another slightly wornout footstool in the furnishings of life both to myself and those around me. I had been hit by the Huge Self Pity Bug of course but dammit I *WANT* flowers, chocs, diamonds, sapphires, romantic walks, adoration and praise! I want LIMELIGHT! For the famous and fatuous to call me Dahlink in their midsts! To be invited to parties and dinners again! I want.... and so on! I'm revisiting my adolescence except this time it's called the menopause which is as bad, if not worse as it includes 'memory loss of the recent events' sort. And I am older and one hell of a lot more cranky too boot!

I know this is getting away from brain tumours but actually it is very relevant. Again when faced with a life changing/threatening/endings, the physical bits sometimes are not as painful as the emotional ones. All the way through this blog my feelings and 'whinges' come up frequently. At first I felt embarrassed when I read back through to re edit this blog and some of it wasn't relevant, but a lot is. Serious illness/injury/life change will throw up a whole bunch of deeply buried feelings/thoughts/memories that have to be faced as well. Some 'categories' would be

Hurt
Unresolved issues
Embarrassment
Lonliness
Umbrage (I kid you not!)
Loss of self worth
Anger
Sadness
Reality Checks
Panic
Accepting life changing events
Having to put all the above and so much more in to context.
Fear, shame and resentment of past, present, future.
Loss of ideal image of relationhips/lifestyle.
Vulnerability.
Loss of respect from self/others, 'persona non gratis', 'pity party'.
Facing a new, scarier and often more hostile world.
Facing changes within yourself.
The Future!

It's not just having the tumour and phyisical symptoms & signs. It's everything else as well. But getting and keeping a realistic insight is also painful because for all I might complain about how I been treated in the past, I also have a lot I need to appologise for as well. The term 'Old Sins Cast Long Shadows' is something I heard on my favourite BBC Comedy drama 'Death in Paradise' from an episode where a Roman Catholic priest was lamenting his past. And the saying is true. Karma, the past etc can and does come back to bite you on the ass and I am often left feeling cold with shame at my blatant stupidity and downright bad behaviour both past and present.

I am also having to relearn what the word 'confidence' means and not feel guilty for being more demanding and bolshy but also need to temper those feelings, strike a balance. I want my remaining life to be filled with love, laughter, passion, bright lights, the warm glow of my hearth, going for quiet walks with Dave that won't be broken by yet another phone call for him to go fix something and he is not confident enough to say no. I want us to become lovers again in the true sense of the word, in feeling if not in action. Dave is very affectionate but he finds it hard too. He has battled with a speech impediment and mental health issues all his life, that I have only recently realised had forced him to have to do a 'Spock' and reign in his emotions, so he wouldn't cry every time he's been taunted. Like me he tends to say 'yes' as he would feel guilty in saying 'no' as much as it is to help someone in need and is open to being used by those who otherwise wouldn't pay him a second glance and rarely pay him for his time.  He is a very bright, practical man who has had to work hard at getting the confidence to develop his own skills and identity.

You should see him planning, designing, cutting and machining a model engine that works on electric, compressed air, and steam should we be able to afford a large enough boiler. All these skills are being lost now as machining is no longer taught in out schools. Dave has taught himself these skills but of course, it helps he comes from engineering stock but they are rare, prescious and require concentration, intelligence.  He is a very quiet man as said before, but *very* sharp and I am ashamed at how often I too have underestimated my husband. Dave's family are fabulously eccentric, subversive and fun doing much to help their youngest son get though his life.

On my end, I am chatty (too much), an openly proud nerd/geek/anorak because that world is where I was welcomed for who I am, even though quite often in my life I didn't and still don't know what that fully means at times. I do crave acceptance and the need to know when I have done thinks right yet it's taken me the best part of thirty years to be able to accept a compliment at face value. I have always been well fed, clothed, safe, warm and with a roof over my head.  But for all that, it has been lonely and scary. Dave and I both have this in common from different angles of course. My brother is the 'carrier of the gene pool' on my side and has a wonderful family of his own who are confident, outgoing, bright, energetic and loved whereas I have declined parenthood as I really do fear contaiminating the next generation with my baggage and have been told in the past this was a wise thing to do. Children are too precious to me to inflict my personality upon.

Where all this rambling is going, I don't know. There is a point in there somewhere and it *is* part of your experience and recovery. Life itself may not change but certainly your take on it will do. Aging and experience does that as it should, but at 2am on a wet Thursday morning my take on life shifted a little with the painful epiphany that I had not made the best of it by requiring something different from both myself and those around me...

..And also the fact I have been lucky enough to be given a second chance and I do not want to waste that opportunity. Ever.

Algy's Demise - Notes on 'Helpful Suggestions' and Other Such Nonsense.

Y'know, I taught Basic Life Support for a number of years, as well as clinical teaching and assessing as a Registered Nurse (ENB 998 for the old guard, as well as a DipHE in Health Care of course) and would love, in theory, to continue to use those skills in one way or another, but there are difficulties. Some of the biggest problems I have are set out below.

a) For example, I tried contacting the St John's Ambulance eighteen months ago, having to go through a website to do so, and got a letter back after a year inviting me to go on a training course..if I was fit enough. No 'who are you etc' nothing! What the hell ever happened to just being able to join a local brigade! Now as said before, you have to find the website and hope to heck someone might phone or send you a letter months later!

b) Yet no one wants to be associated with a washed up knackered ex-nurse obviously as I had been turned down for work such as a Level 3 NVQ Assessor in Health Care with my local college (Yes, Penwith College in Penzance, I'm looking at you!!!). This was not long before I had to retire and now of course, my qualification is out of date. So there's another skill I have learned, funded by the NHS which has also gone to waste.

That's a few examples of how I have tried to find other ways of using my skills but to no avail. Of course there are other problems that I have had to face up to but others obviously haven't, such as my energy levels and how I *cannot* function on some days no matter how willing I might be to try.

I can sympathise with the fact my skills are going to waste but I do need to let you all know I have tried, and still try to be productive and useful. However I don't know which is worse, having so many keep suggesting maybe I can do such and such, or being told I can't do such and such. Both are equally irritating because none either understand the nature of my illness or what *I* still have to learn about my limitations and often I feel upset and demoralised because siuggestions from either camp, and can often leave me feeling useless and tearful.

Maybe I could lock both sides in a room so they can battle it out and then get back to me with the results.

Other news just in. Things continue to progress but I am piling on the weight! Must try and reign things in a bit as it is very easy to undo the good work I have achieved with my weight loss, so will get back to proper eating and leave off the choccy cake etc.

I'm nearly two thirds of the way through and so far I've had a great vacation but these past few days have started to feel more wobbly than before and the neuralgic pain on the top of my head is a little moire intense at times. I'll be seeing the clinical nurse specialist on Wednesday and will discuss the above with her. It means some of the side effects arenow starting to become a bit more noticable.

Have had a fabuolus couple of weekends in Chichester, staying with a friend and this has been a nice break from London. Have gone for toddles, walks around the beautiful catherdrals in Chichester and Arundel, seem some fab art exhibits and avoid being stung by numerous Sussex wasps, and seen a fantastic production of 'the Ristable Rise of Arturo Ui' with Henry Goodman in the starring role. I love being a 'luvvie' ;-) But have as said before been feeling the effects of radiotherapy catch up as I needed help getting through Chichester market last Sunday. My head was spinning and the feeling of all but falling came back with a whallop but did fade off to the usual feeling of being wobbly.

Note: If you live in the UK have a DLA/Employment Support Allowance Letter (income related), scan them in, shrink the image down to 'credit card size', print out and cut around the letter and pop in to a wallet of the type you get for rail cards etc or a small plastic sleeve (look in an office supply shop) or better still get it laminated to that size. You can carry this about and use it as proof if entering anywhere etc that may require such as ID.

I have found out that for DLA certainly most places will let you or your carer in for free. But make sure you ask any museums, galleries, productions anywhere if they provide concessions for disabled persons as this info may not be displayed. I've seen concessions for OAP's etc but not for disabled and had to ask, plus it was amazing how many of the staff in box offices etc were *not* aware of any discounts. So don't hesitate to ask and use your DLA award letter as proof. Sometimes a disabled person's railcard might be accepted as well but check beforehand.

Laters XXX