It's 00.55 - wow! I should be in bed.  I went and fell asleep watching the TV but must go to bed. I am being picked up about 9am. I have to be at Hurstwood Park Neaurological Hospital at 11.20am. I have been called back to see the eye doctor after my pituitary adenoma (tumour) op on 4th March.  I did go back in April and had a Goldman test, was told any problems the doc would call me back. Well tomorrow be the day.  I will know more about the tumour on 7th July.
I am healing very slowly...everyone says I look well, well can't deny that - on the outside...the healing has to take place inside me and I can feel the problems.  Anyway, going to bed now....

I have never take so long in recuperating from an operation as this one, but I will. As you are aware, things have not been up to par since arriving back into Hastings.  I really felt alright two days ago, then what do I do, take a nasty fall in my flat....ok, I challenged it and made it.  Today the pain is easing again, it was all down my right side, I am right handed, but the operation to do with my brain op needed also an operation on the right leg, so pain I am stuck with.  By the way, I saw the man who gave me courage for this operation to lay open to the positive state again and told him that I had mentioned him on my blog..well, his name is 'SPACE' - if anyone knows 'SPACE' in Hasting you will then know who he is.  In actual fact, the shop he works in was doing a Bond Day at the time of discussion.

Wouldn't it be lovely to go back to my teenage days...life was so full of freedom, joy and happiness then.  Hastings has changed so since then.  Maybe I should actually start the autobiography I really want too...dads wishes were for me to write his biography before he died as he did alot in Hastings, maybe I will just have to combine the two...I'm not getting any younger.  My disabilities have held me up so much.

I saw the Patron of the magazine I do.(Editor/Founder).Ebb & Flow Community Magazine which is now hibernating ready to decide which way to go....I am gradually finding the therapy writing again, and the fact this operation I have had will cease the way I used to do and deliver the magazine, I have other thoughts.  The magazine as a non-profit has ceased. The Treasury account is closed...not many people bothered to use it anyway, the cost mostly was down to me and now with the credit crunch I can't take that on board anymore, so what I have decided to do is continue in the style it was when I have the strength (my thoughts today unless they change) - maybe smaller, as and when I can afford to place a few thereaputic style mags out. and that includes its small newspaper called NEWZOWN...(I already have my hairdresser agreeance to place a few on her table of reading matter for her customers) - I will always continue to place a copy and a few in the reference library to be read, that is if they don't say no...don't think they will, after all, I am a local writer/poet...and past freelance community columnist for The Argus.  This way there is no pressure on me, and there will still be alive the magazine I know some enjoy and have missed.  I have noticed that many love but grab because they are free.....anyway, the reason I continue is because what I do is also out of love....not the grabbing of funds....that is why I always said gift in donation to help with the expenses...you know, I had more donations that way from people away from Hastings.... 

I have so much to try and get my brain working again...through the happenings in the town since I have been let loose into rehabilitating myself, I have been as I say relapsed which did shock my system again, and my brain gets tired and loses memory again...I think maybe alot of the youths in town should start respecting their elders and not just do things without a thought for others....sometimes you know, I could say this about the elders also....I have had a major operation through the nose like Russell Watson the classic singer had, but because you cannot see what I have had done many just realise that nothing has been done. I will also say again...RED AND WHITE CANES depict DeafBlind UK....seems the colours you would see, but hardly anyone sees ....wow!, the Blind know but the sighted don't SEE...how STRANGE

I have started to realise sometimes its best just to keep myself to myself, then the pressure of stress is not given...read into this what you will?  I sometimes wonder if its worth even blogging on here as there is hardly any ever comments....

Anyway, back to the magazine....The Patron has agreed to be The Patron whatever way it goes, whether high in the charts or low in just theraputic style...now isn't that nice of him....He has been Patron now since 2002 and even gave it an award once...as he is Lord Brett McLean of Hastings, AND a Ladybird photographer...

Well, I am going to close now...have to go and have my days tablets to keep the body working....
Until next time

Blog 26.5.09

I really don't feel like writing at the moment, but writing is my hobby so here goes. This is my blog I normally place in the Hastings & Observer section on line. I think I have added a bit since my operation in March. I've had operations before, but this one takes the biscuit. It is very slow healing. I keep thinking it's going wrong, but by going by the right sensations of what may go wrong, I think it is ok. Sometimes I feel quite ok, I even look ok, but sometimes when I'm hobbling along with my two canes, I feel so terrible inside. Maybe this is a bit of negativity but positive emotion is the goal and my quest.

You know, I really was beginning to feel I was getting better, but then happenings in the town give me relapses...I end up just wanting to stay in bed because my brain gets exhausted and tired, I have snippets of headaches, and then sometimes things happen, and I believe I am losing some of my brain through my nose. But, going by the notes, I'm ok. I can just imagine now how Russell Watson must have felt when he had his tumour removed. I still don't know if it is confirmed my pituitary adenoma (tumour) was benign. They said it was benign at the beginning, but I know it can change, and mine did start growing, even though they felt it ended up the same size as the beginning, but I have notes saying otherwise. I even had the States wanting to give me free surgery at the knowledge of scans taken in 2004. But, I decided the NHS of our country should do it.

Well, what was it like? I used mind over matter in much of the preperation. I kept bleeding when they tried to get the canulas in...then doctors had to come to complete...throughout the whole hospital stay I must have had about 8 plus about 15-20 blood tests. When I went down for the operation, it was much different to any of my other operations I have undergone - and I have had quite a few. In the theatre, they couldn't find my veins...I was asked to gas myself while they put the canula in, because it wouldn't work first. I did. My brain told me I was getting the same sensation I received when I had my tonsils out at the age of 4...(it wasn't until only a couple of weeks ago, that it was reminded to me that I was allergic to gas)...I do know that because my file is so big, the present day doctors etc do not research back, they deal with the present...why did I find this out? because I happened to mention about the aftermath illness when I was about to leave the hospital and had to then remain in another 6 days approx - it was in this period that I gave up and was ready to go, and I believe I did die and come back, just momentarily, I was sitting in a chair).

I thought the operation was over when I came too, but in actual fact it hadn't begun...there were nice people in there, and I then blurted out about the operation when I was four, and they said it was different these days...I told them, I had written about this and it was published in a book called 'Diamonds' compiled and published by Hastings Writers, and they could research it on the net etc...I was then told to gas myself again - (I noticed it was pink) - it was definately different to the gas you use when giving birth.

I was waking, but I was shivering so much, shaking with cold, I could not understand it, this had never happened to me before....I heard someone say, she isn't warming up (what had they done to me I wondered, was it shock? had they stopped my heart so as to keep me very still) - I can't remember if I said I was cold...all I know is, I then went extremely hot, so hot...it felt like a cover had been put on me...I remember my mind saying perhaps I had hypothermia.

I was back in the neaurosurgical ward...doctors kept coming, nurses, medication....pain killers - I had my paracetomol, but I also had 'Oromorph' - I am allergic to morphine patches....As I was beginning to realise I was on the mend...I thought of a man who I knew had been to Hurstwood Park and had a tumour out, he gave me good knowledge of becoming positive and getting better. I will always thank him. He works in Hastings, and because I did my mag he knew me....I found something on my head...it was confirmed a couple of staples, seemingly in my humourous way, I had been scaffolded. Basically, they had to make sure my head was utterly still....I said I found some more (18) on my leg, and this to me proved what had happened, and it was confirmed. I had had a CSF leak from the brain, they used some of my flesh to aid this, and I was, given lumbar puncture, the nurse believed two...it is all of this that seems to be crippling me...made worse I believe because I suffer osteoarthritis, fibromyalgia and spondalitis of the spine.

Gosh, trying to get a tumour out of the nose...its so strange. So problematic.

My daughter came to see me every day, I did not want anyone else, only my two granddaughters also, I knew it would be a traumatic time, and I knew that I may not have survived and much could have gone wrong. My eyes went crazy, it was lucky I brought my dark glasses..I was forewarned I may go blind...I am going blind (and deaf) - it was awful...I was taken for another CT scan, but when they brought me back, the wheelchair went so fast I ended up with about 3 days bad menieres disease (yes I suffer with that, have done since 1986) Well, it turned out, on the 10th March when I was due to leave, I became very very ill again...I had been moved to the medical ward...I became depressed straight away, and it was in there that I just didn't want to cope...I became a catch 22 so a nurse said when I was beginning to climb the hill again.(when they had transferred me back to the neaurological surgical ward) ..seems all the doctors did all they could for me - well, it was in there I heard of a friend dying...I began to feel his breath was blowing into me to help me live. I can't even understand it... I knew all my friends and family needed me then. He was mentioned in the Hastings & St Leonards Observer...a local red cross man. He had been enquiring how my operation was going amongst it all....his death was a shock to all. It was my turning point, although I am glad I went through with this operation...

Can you imagine? it was growing...veering to the left and one of the consultants at the Conquest told me not to let anyone stop me having it out, for when they grow, they grow into the brain like the rootes of a tree in the ground, and sometimes some breaks away into other parts of the body..turns cancerous.

About two years ago, I was phoned by my doctor who has since retired to say I had an area in my brain with not enough blood feeding it, to take it easy, not to worry. I now know with my persistance of finding out the truth, that I indeed did have an infarct stroke...in my own opinion - I do believe this was caused with a very nasty fall in the town straight onto my head...I understand that the sound echoed throughout the place I was. I remember not being able to get up, and eventually two or three men helped me, I sat, said I was alright in such pain and embrassment, had tea, and then paid and walked out.....I walked vaguely towards Priory Meadow and sat....my memory was going...I sat for ten or fifteen minutes I believe...I didn't realise I had left my guiding cane on the chair, when I did remember the following day, it was gone...no-one found it. Because I became an expert patient with the NHS, I just let myself heal and heal, but then when my words like today came, I wrote via email to one of the consultants (retired tumour) and he said if I was intelligent enough to write, I wouldn't have had a stroke.....coincidence or what? So, with the knowledge of this, and now having my tumour out hopefully, I must train my brain, I don't want it to die.

I am finding it painful in around about way, that it seems hard for my words to really drive their force onto paper or computer screen. I have done a few poems, I did one for Hurstwood Park which they have, and I also sent to Radio Sussex and Surrey via their buzz mag on the net, had a nice reply, and have tried to go back to my writing group and lip reading classes....I would really love to start sketching again...I would like to sketch illustrate my words...the magazine, has stopped - I want to continue only as a hobby...it will be found when that takes place...perhaps the odd one here or there. My hairdresser said she will have a few on her table for her customers to read...I will probably still make sure the library has one, but it will have different wording inside...just a freeby...you know why I feel this more than anything, because I have done my utmost doing this magazine since 1999 - and really this year, ten years later is the first break, but, it was non-profit, and only a min-ute few were kind enough to give a gift donation to help with the expenses. I did not get help from the town or grants because I am the only Editor and Founder...well, the truth of the matter is, I have spent so much because of the love of doing it and knowing so many loved reading it and kept asking when would it be out, but I too am only human and have to survive financially too....there is a credit crunch, it is about time I faced that fact don't you think?

Ok, so now I'm home trying to recuperate from this. I know I have over done it, you tend to forget - but with a brain, it has been proved to me that I must give healing time. Who knows what and how I will feel in a years time. What I have found though since exercising as best I can around Hastings Town again, even my red and white canes are not bright enough for some, and much disrespect is shown from few....I have just had two weeks with a shock to my system because of this. In fact, I've also found my brain was shocked also because I have had to deal with word problems again...it's good that many in the town that deal with me when I'm there understand the situation.

Josie Lawson

Well, I did have that operation and I'm back here two months later to the day...I didn't realize until I checked my last blog entry.
I don't think I am ready to write about what I went through on here yet...I am still suffering alot...but just to say, I was due to come out on the 10th March but then my whole body took a nose dive and I ended up with loads more tests etc.  It was at this time I couldn't take anymore, I was due to give up, and then I heard a friend died while I was in hospital...it seems from a friend after I came home, he had been enquiring about my operation and wanting to keep up to date, but he suddently died.  His tribute was in The Observer, and I did manage to write a small tribute verse which I placed on his tribute facebook (I think) page. It was then that I felt his breath of life leaving him come to me (although it was probably just how I felt) - and I knew all would need me....he was well known in The Red Cross in Hastings.

I wrote a verse today...(it is good to get my words back mostly this week...) I must also thank The Observer for mentioning a small piece in its pages with regards the magazine I've been doing...as things are, I am still at a stand still with it...also at the present time, the credit crunch would prevent me from getting it printed anyway...time will tell if and when I get back to it.

At the end of this blog I will place on the verse I did today...it may be a shock but its a reality. I was inspired by life itself, and also the knowledge of Jade Goody and her struggles in life, and also the knowledge that even though she is not here she made the effort to be here in spirit for her children.

WORDS PEOPLE TRY TO HIDE

We all face death

But there are times when we know we must survive

So -

Whether from accident, operation, illness or any other form of act

We try to recuperate

Sometimes in pain, sadness, despondent moods, depression

Trying hard - even with humerous acts

Some of us notice people help us smile

Inspire our hearts and souls of our-selves into a new world again

We see life, happiness

Our smiles blossom.

Even if we are in pain.

There are also days when our pain could become minor in our lives

Leaving us time to move forward -

We will still have to accept though

We will face death again.

It is necessary for all of us -

But if we as individuals still have things in our lives to do -

We could survive - and Do Them.

©26.4.09 Josie Lawson

All Rights Reserved

(INSPIRED BY LIFE ITSELF)

With regards my results to the operation - I don't know yet. The tumour would have (so I was told) gone away for biopsy...but I do know, for me to get through it, I ended up having to have another operation to aid the repair of the CSF leak I had from the brain, which is probably why I had the two lumbar punctures - and wow! I'm still in awful pain. I go out for walks, but with great difficulty...I feel like a 90 yr old within body...When I sit I can relax, but today, I felt so much pain in the spine...

I have been back once to Hurstwood to see the eye dept to assess - was given a Goldman test, was told if the doc needs to see me with regards the eyes I would be called back...I have been, appt 11th June.

Unfortunately, after my hospital stay, I was attacked by hay fever and allergy in the eyes...it was caused by the flowers at my friends funeral...so, I have been getting back my strength probably a lot longer than would be necessary for a transphenoidal...but - I have had a panic attack...I only ever had them vaguely before, but since taking walks in town, I found that there were some really nasty people about...I know, there are in any place, but what those people don't realize is, when you have a tumour removed, especially through the nose, it is not visible, and you have to take things really easy...perhaps, everyone should respect everyone else, then if something unfortunate happens to them, then they too would be prepared.  Going to finish, my brain is getting over taxed and I believe some of this has got a bit mixed up

Nite everyone...I sometimes wonder if my page is ever looked at - but even if not, I still write.

It is now Sunday, 1st February...maybe nearly a month since I have written my blog.  As you may be aware, I have had a lot to do with regards my health.  After appts here, appts there, providing the bed is available on the 3rd March, I will be having my pituitary adenoma (benign) tumour operation on the 4th March at Hurstwood Park Neaurological Centre in Haywards Heath. In a way, although its a scary operation (one similar to what Russell Watson went through) in my eyes, it is a good move. After being made aware that the tumour is slowing growing, veering to the left with slight suprasella extension...it is growing, and we all know what the consequences COULD BE.  I am not backward in coming forward.  Get the ALIEN out now then I can rehabilitate and hopefully get back to a little more quality of life.  I would like to continue with my writing.  I know the down side...this was discussed around the table at Hurstwood Park.  I am still going through other health problems, but there was one person who really gave me a lift.  He has already had a brain operation at Hurstwood, and yes, we discussed the downside...but wake up he said, fight for rehabilitation and that is where the HOPE is....(He is now back at work) -After all, the Conquest are already making follow up appts...as I was told by the neaurosurgeon there, although it is a simple operation it is 50-50 - High Risk.  I am having to deal with so much before, that you just don't have much time to think about the negative side.  I am sticking to the positive as best I can.

I thought my writing had gone into a full time block a little while ago, it did that back in the 80s for a good six years until I came back to Hastings....yes, I was born here, in the Hastings District as it was called then.  But, I do still find the odd poem arise out of my mind.  I gather I must also be an author now too, after having a piece published in DIAMONDS collated and published by the Hastings Writers in respect of childrens charities, and just recently at the tale end of 2008 - a book entitled Life's Stories edited by Michelle Afford ISBN: 9781859291580 - It says on the back cover (and remember, I only have one story within, there are many more by other authors) - Life's Stories' is a collection of short stories written by many of today's up and coming authors. Together they open a doorway to the world of imagination thus luring us into fiction.  The stories vary in style and creativity, which makes for a diverse collection of life's stories set in stone to read for years to come.  A timeless classic to draw us back again and again. NEW FICTION. First published in Great Britain in 2008 by New Fiction, Remus House, Coltsfoot Drive, Peterborough, PE2 9JX - Tel: 01733 898101 - Website: www.forwardpress.co.uk - All Rights Reserved. © Copyright Contributors 2008

I must admit, I have been published over the years with many of the houses in forward press. I can remember the first publication that I WASN'T EXITED ABOUT, only because I heard the day of my fathers funeral, that I had some poetry accepted for publication in the states, that was back in the early 90s.  Hastings didn't know about any of this, because I started my poetry timeline with a different name in West Sussex. I enjoyed country and western music, following groups that I liked, and getting my tiny snippets of poetry interviewed on hospital radio....it was all noted in the Mid Sussex Times, they even did a big interview on me, picture and all, my goodness, the goggles...I found a photo-copy of it yesterday...that was 1983....I was even interviewed once on a radio station that was called Southern Sound at the beginning of their days...it is now called Southern FM.. I then went onto being interviewed on other hospital radios, and have actually been interviewed way back on Conquest radio with my old name....- I enjoyed the radio days, even when I was going through a very blind moment, when I had a homecall visitor, I did a cassette radio jingle I think it was called....I have written under some pennames in the past, and to my audacity even now occasionally. 

Over the years, I even did a freelance community column for The Argus newspaper, I only ceased because they stopped the section in 2003 - I actually started the mag I do about the same time....which due to these health problems is now on hold....

I was only saying yesterday as I was watching American Idol with my granddaughters, that the poetry days of reading performance within the Hastings area, I have had to give up due to health reasons, has effected me...there are many of us having to give up what we enjoy, but you know, where there is a will there is a way...find another route....thats me...I always wondered why I have this strong mind of finding other things to do...

Right, I am going to come to a close today, and see what my life will find for me as of today....

It's been along time since I updated my journal blog on this here newspaper. Having had so much to deal with I just haven't had the time.

The time had come for me to start looking into a slightly growing tumour...I want the alien OUT. And so it begins the wonder of it throughout the next week or two to get either the brush off or the get set ready go....

I am having a cortisol blood test tomorrow morning...it seems this will state yay or nay to whether I need steroids which will destress or something...seems this has to be done before you can have an operation.The operation if it goes ahead...I will know more when I go to Hurstwood Park neaurosurgery dept next week, will need to be performed like the one that Russell Watson had. So there we have it...perhaps if its done I may get some of my quality of life back and be able to venture slowly but surely back into hobbies etc that I like doing. Get rid I say.

What has been getting up my goat recently is finding out being disabled things you notice happen that shouldn't. Loads of things that I won't bother my brain over, need to stay relaxed, but the bit that really annoys me, is done with good faith. Perhaps if employees were trained in a different way, more time would be saved and getting cash into you purse easier. I'm sure others will have noticed. You pay up, and the change is promptly placed on top of the notes in your hand....and so, here is the beginning of trying to get the cash into your purse without screwing up the notes and placing where they should be, or you have to screw the lot into your purse. A simple method would be - and I will say, there are a few clever till employees about, place the cash first into the palm of the hand so to slip very easily into the purse, then the notes...Oh, how much simpler...doesn't matter so much for a man, I'm sure it's easy for them just to place all in a pocket as most do (I think).

Here begins my grievance of the credit crunch...just spend less and work with a budget...but, I have noticed, (and it has HAPPENED TO ME which I found very blatantly rude and unnecessary) no mention of where. I am disabled...I am hearing impaired with a great deal of ear problems at the moment, I am partially sighted, etc etc. And so, I decided to phone the shop I needed to know the date of closure...I knew it had been placed in the Hgs Observer, but I didn't have the paper, and had not read yet, a friend told me...but...the big but, I couldn't hear properly, I tried to explain but instead of the usual way of perhaps the customer getting irate, the person that is SUPPOSED TO HAVE GOOD CUSTOMER SERVICE no matter what is taking place, lost patience with me...and said it didn't matter. I had to walk to this particular shop (which I will mention until this episode, NEVER had problems) to find out...I saw the manager and the shop full, so quite calmly stood in the queue to ask when it was my turn, but then an employee I knew came my way....I asked if she/he knew who I had been on the phone too and said how rude they were...it seemed it was he or she - I said I had mentioned my name (which shouldn't have mattered anyway) and she/he said at the end, but then she said by walking away into the back away from me, she couldn't care less because they had just heard and it didn't matter...she didn't care (unquote) not word for word. And there's me with this blooming bothering tumour and the possibility of stroke which they thought I had had in the first place...closing or no closing...they have lost my custom.

What I would like to say - I will let the matter drop unless it is necessary to bring it up again, but it is quite true that until you have disabilities, you don't realise what you have to put up with...I would say...if I had acted that way - I expect zero tolerance would have been brought in, and I may have been given an asbo...writing is a good way of releasing tension...maybe verbal reaction (this particular person was rushed off her feet) but it has just been a volcano that has made me realise just how much I have had to contend with over the last few years from verbal abuse, accidents etc within this town...many people say...why me? Should I say that? No...I will just say...maybe human beings could just start to be HUMAN and not ALIEN.

I am going to stop, although I would like to continue. Get this alien out my head then maybe my choice of starting to write novels may just come alive...only time will tell. I am living day to day. Anybody who likes reading the magazine I do, may also have to realise that I AM HUMAN, so it may rest before it begins again....

Further to my previous update, I have seen the hospital re my tumour that seemingly is slightly increasing in size etc.  I have mentioned the request of operation. What is now taking place is a day blood test, if not producing enough will have to go on steroids. At the same time, I am being referred back to Hurstwood Park Neauroligical.  Awaiting appts.  I have the follow up appt for the blood test, but no request to go in yet for it. 
I have seen the gobstopper as I call it, (the alien) on a hard copy of my 2004 MRI scan. A young man from Morrisons helped me understand how to find out the actual size from a ruler onto paper...thats when I started calling it a gobstopper. It is 11mm - I feel, that if I give myself this chance of having it removed (it is benign) but so was Russell Watsons....it would be removed the same way...I may get some quality of life back...sometimes these headaches can be really bad and sometimes just hit me when I least expect.

Other than this - my writing is still with me...I am now a member of another writing group in town...Grass Roots Open Writers...the website has just been changed and as I didn't write it down, I can't place it on here yet....it is a great group...not to say none of the others aren't  - I still belong to another one, although I attend this one...
Writing can be a lifeline, an enjoyable task....a personality bash...and to me, can be very prolific.

Think it's time for my breakfast...my writing took over today, I can feel a hunger pang.
Until next time