Voices that whisper, dark deep despair

I do however have to start my break with a photo! Starting a...

Sun, 18 Oct 2009 18:44:34 +0100

I do however have to start my break with a photo!

Starting a round of a sock war, odd time to start a battle, however I feel these are a definite set of winner’s really. This pair of socks was just one of the many mind blowing things contained in my awesome gift box from Rita and family (by the way I have pretty much eaten all the twizzlers, I am an addict, maybe a good thing they are not sold in the UK).

Now of course its a odd time to start a round of sock war as I won’t be online to see the challenge’s or get the results, so maybe if you have the time and want to join in you could email me your contending pair, you will also be sure to be keeping a smile on my face!

Though in my heart these are winners no matter what! They shall be lucky socks, they will join the pile of sock friends who come with me on hard Hospital day’s. A thing I started near the beginning of treatment, having lucky sock’s or sock friends, it helped to have socks with characters on them, rather than just an awesome pattern and colour. When your stuck machines like an MRI scanner for up to an hour I worked out being able to see my tippy top toes and smile helped! Another snippet of the strange world of my mind!

sort of offline for a while

Sun, 18 Oct 2009 18:26:01 +0100

Just to say I know I have been rubbish at posting things of late, things are a bit tough right now. I owe so many emails and am so behind in just everyday stuff my brain hurts just thinking about it. If I owe you an email, if you have sent me things or an email, letter and not heard back, please note it all means the world to me just right now all the good time I have and any energy is being put to use to survive and plan a new medical treatment and some other things.
I am going to be offline pretty much from now till November, I will probably be checking email and hopefully sending some, I will be keeping and eye out for anything big, and please do email me and keep me in the loop of your life and the world. I just need to step back and evaluate and play catch up in the real world for a bit.
I hope to get some actual letters written over the next couple of weeks while I am resting and catching up and recovering, there is going to be a trip to see some friends, there is many medical things and lot’s of scans and tests that = sitting round a fair bit, so while I do that if I have some energy I plan to put my headphones on, listen and always have pen and paper to hand, and hopefully a camera to. So this break shall hopefully create and installment, or a chapter to the future book. Whatever comes of it.
I just wanted to say that I am going to be even quieter till November so that hopefully people will read this and then not worry to much. I will try and write the odd update, email or text to people though to make sure I am still fighting on and my brain is still going in some sort or correct direction. I know I am not making a huge amount of sense or repeating myself, so I shall leave it at that.
HAPPY HALLOWEEN people, I had a friend help me put some decoration up in the windows of my house today, it makes me smile and though its not a very big celebration in England up till I got sick I was pretty much either touring with people form the USA or in NYC or America during October and therefore Halloween holds some very special memories, esp. Halloween 2005, just pre the first illness started to take a big hold and before many other big life changes, it was a very happy month, I am lucky to have the memories and I found the October 2005 NYC photo’s the other day so, smile, smile, smile.

P.M.A, star, smile strong and Love it to Life!

wholerascal: I got a mystery delivery today. So happy for you....

Sat, 17 Oct 2009 16:18:17 +0100

wholerascal:

I got a mystery delivery today.

So happy for you. Mystery flowers are maybe one of the best things! Any girl that says they don’t like getting flowers is lying to herself or trying to sound cool!
They are very pretty, and why would you not get mystery surprise flowers, your hot, your awesome, your an amazing friend and person and well I could go on and on gushing about you.
Look there is my favorite flower too, well after sunflowers… A gerbera, I love them. I bought some for myself the last week, but they look dead today I need to throw them out, sob sob, but I will treat myself to more when I get back from Germany. I don’t care it people laugh that I buy myself flowers, its a short walk to the local flower shop, the lady is lovely, we have a nice chat the walk does me good and I come home with a normal mix of gerbera’s, I like the brighter ones, sometimes I will mix in 3 sunflowers and 3 gerbera’s, sometimes 9 gerbera’s in sets of 3 and 3 colours.
Odd Fact: Flowers should always be bought/given in odd numbers, ironically that makes given a dozen red roses for example unlucky. Now anyone that knows me well enough will know I have problem with odd numbers due to my ocd, for example I have to turn the volume up in even numbers I can never have the volume on 5 or 9 even if it were the perfect level it worries me, who knows why. I buy things in even numbers, but I got told and taught about the flowers and odd numbers, and the way I have managed to be ok with it, is to work it to groups, so in a way 3 sets gerbera’s in 3 different colours somehow makes it ok.
Who knows I gave up trying to figure me out long ago!
Sorry for the lack of posting, I have been sicker than the normal sick me of late. Some good things have happened though. I got to see and hang out with Brad for a evening and it was brilliant, he made me chuckle and smile and many stories went back n forth of old times and the future, the music was spot on, he was on fire and drumming better and harder than I have seen in a while, his spark was on full! If Brendan Benson is playing in your area, go see the show, for my London friends that’s the 21st in Camden for Brighton friends 22nd for others look it up @ http://www.myspace.com/brendanbenson
Other amazing thing was getting a great gift box from an amazing lady named Rita and I am going to blog later with some photo’s of the awesome stuff in it and the smile it also put on my face.
Now though after what was first a simple reblog and has turned into a random ranting from me on all sorts, well now my eyes sting, my head is spinning, I don’t want the migraine back and I don’t wish to pass out again so I am off for a lay down with some herbal tea and my oxygen and then I will blog about my awesome gifts!!!

Bit of this weeks medication sorted, still a few tablets missing...

Tue, 13 Oct 2009 23:47:29 +0100

Bit of this weeks medication sorted, still a few tablets missing that have to stay in the bottles they are in and of course then there is the stuff for eyes, inhalers, oxygen machine, liquid meds, powders that need mixing, injections… hmmm yummy!

Urgh organising my medication for each week takes a couple of hours and even then each day there is loads to remember and its boring, horrible and I am rather tired of it, but at the same time I like to know I have it all to hand, kind of, mastered!

Ok so now I am getting into my bed, I am going to finish watching the documentary that is on and maybe go crazy and paint my fingers nails as I rarely do that, and I feel like if I do make it out tomorrow its going to be a good day and the last one for a little while, so why not make the most of it, and if I wake up feeling terrible and can’t make it, well at least I can lay there and look at my nails… ha!

Night Night whoever is out there casting an eye over this here ranting of mine.

barelysarcasm: iammattjordan:(via explodingdog) This I think...

Tue, 13 Oct 2009 23:38:08 +0100

barelysarcasm:

iammattjordan:(via explodingdog)

This I think pretty much sums up 2003-2005 at my worst points, good times were had though I will admit, I would not change some of the memories, places, people and things that came in them there years, however would I do it all again knowing what I know now, well that’s for me to question on the nights of insomnia!

synmirror: want.that.view. (via kari-shma) In my style I am...

Tue, 13 Oct 2009 23:35:47 +0100

synmirror:

want.that.view. (via kari-shma)

In my style I am always so torn between ultra modern, white, clean, hidden away things which I guess are drawn out more with my O.C.D when it gets worse, however in many personal styles I love French chic, 19th/20th classic French, traditional English Edwardian or Georgian, with or course some art deco one of my favorite era’s thrown in. One day I will own my home, apartment, not rented I will know I will be there for the long term with no threat of having to move due to illness and government placing etc etc… and then I will be able to decorate each room with a distinct style and well just enjoy enjoy enjoy… Saying all that look at the clean lines, straight lines and beautiful city view of this home above… ha. Indecision, Indecision, story of my life I fear! Like the choice of London or Surrey, right now I am staying a little way out of London, close enough to enjoy the city as and when I need, but free to walk around my tiny green village with little independent gift shops, coffee shops, flowers, trees, woods, fields, ponds and tradition a plenty and with that of course comes a amazing sense of community that after a year living here I am just discovering the full depth and extent of! I know for now the decision to stay here away from bright city lights, too many gigs bars, art galleries and paces to over exert what little energy and good days I have is for the best and the air, life, pace and style down here is just what I need and want.

Now if I can de-clutter, sell the piles of things waiting to be listed on ebay, do the car-boots sales in November and fingers crossed score a decent deal to be able to move into the newer, warmer, less stair ridden apartment in the building next door maybe by Christmas I will have a reason to smile for a good start for 2010!

rough times and good times

Tue, 13 Oct 2009 21:52:58 +0100

Last week I was pretty down and tired sue to a throat infection that would not go away and I was then dosed up on antibiotics. Then there seemed to be some local pharmaceutical delivery problems as a few people I know suffered similar problems. I was unable to get all the med’s I needed so ended up with no morphine so a fair amount of pain for several days and also only able to take half the amount of one of the heart tablets I am meant to take to make what I had left last, of course that meant extra time on the oxygen machine and extra chest pains and palpitations, and well one of my stomach tablets was impossible to get for over a week. Thankfully today all was back to normal and my medicine cabinet is back to full stock I think, so before bed I will set up my weeks tablets in the 7-day pill box thing, otherwise well I get confused, muddled and lost, let’s leave it at that.

Monday I saw the gastric team at Epsom hospital who of course said not very much, that I need to talk to the heart specialist before they can make further changes or tests, however I am due to get a referral to a dietitian, which I am sure will remove even more food and therefore ease and fun from my life, but it is makes me feel better I will give it a go. So now I am waiting for the Cardiac team on the 30th, Palliative care on the 29th and the Endocrine on the 9th November, somewhere in the middle there is many visit to the G.P and many a blood test with The Royal Marsden.

To add to all that I had to go and see a new dentist today, apparently you need special care and to take extra care and antibiotics with your teeth work when you have my heart condition, who knew the heart and teeth were so closely related. Anyway the new dentist seemed very nice, she told me I need to get my cracked tooth capped (the fun and side effect’s starting to take effect from over a year of steroids). Then she will give them a good clean, and fit or mould a mouth guard as when stressed (me stressed, about what) and also in my sleep I seem to grind my teeth a little, never a problem till the medication started weakening them, so now she will make a guard that should be ready in about a month or so to wear at night or if I am aware I am grinding my teeth, oh to just add to my sex appeal!!!

However I did fit some good things in, I hung out with a nice young gentleman who happens to be one of my friends son’s (don’t even want to think about the fact he is ten years younger than me is even possible) and enjoying some live music. The following day his dad and friend picked me up and we went to look at the new Fiat 500 car’s, I think my friend Bernie is going to buy one, and its the car on my “when I win the lottery list, of course I must remember to play it” list. Then we went to good old costco and had a lite dinner snack before they drove me home and I went right to bed by about 9pm and missed my first dentist appointment at 10am today, lucky they could fit me in at 12.20!

Next it is all fingers crossed that tomorrow I will feel good enough to go catch up with Mr Bradley Pemberton who is in my country banging away for Mr Benson, and I know he will cheer me up and make me feel alive, so fingers crossed I wake up feeling energised tomorrow please! xx

Sorry for lack of updates

Sun, 11 Oct 2009 21:39:31 +0100

Been a bit on the rough side of late and just trying to get by doing the normal things that one has to do each day!

Today however I made it to the “outside world” not to far away though… It involved a good Italian lunch, live music for 20 people by Mr Slaid Cleves from Austin Texas and at least 7 or 8 now good friends, and 4 very good friends, good laughs, good coffee and a life home, and I am home and thinking about bed and it’s pre 10pm, so rock n roll baby!

Tomorrow I have hospital at 10am and tomorrow I have the dentist at 10am, its the first dentist visit since they discover the heart condition so it now involves having to go an hour before my appointment to be set up to a broad spectrum IV antibiotic drip for an hour, extra yucky! My life is awesome. ha.

Love, peace and passing thoughts…

I never knew what time it was till closing time came round, my drinking days are over but I am still trouble bound!

barelysarcasm: He’s BEARLY trained in Karate! (via...

Fri, 09 Oct 2009 16:11:10 +0100

barelysarcasm:

He’s BEARLY trained in Karate!

(via harmonwashere)

This looks like a scene from the film El Oso, which is in English called The Bear. You can read about it here http://en.wikipedia.org/wiki/The_Bear_%281988_film%29 I know it as El Oso as I would watch it with my Grandfather every time I went to stay with them in Spain. I have been missing my grandfather so much of late, he was this amazing gentleman and I feel I lost him suddenly and right at the time I would have been able to get to know him in a much deeper way. I lost my Grandfather in September 2005 just before I got sick starting the October 05 and being diagnosed fully in the turn of the new year into 2006. I actually spent New Years Eve in hospital waiting on the full set of staff to come back for 100% confirmation of my leukemia, though I already new being as I was sat in a private room in Europe’s leading blood cancer hospital and I don’t think you get that far less they are pretty sure.

Anyway I guess “Take me home just don’t get sentimental on me”.

I need to find this find on DVD.

notarobotbutaghost: almostnever:stayupforever:loveyourchaos:fuck...

Fri, 09 Oct 2009 16:01:56 +0100

notarobotbutaghost:

almostnever:stayupforever:loveyourchaos:fuckyeahtheuniverse:(via astronautfarmer)

I used to be able to find most of these… not so much anymore which makes me sad.

I want to click my fingers and time travel back to a week of sleep under the stars in the Kalahari desert, sleeping on top of a 4x4 just under a mosquito net, being sent off to sleep with the roar of the lioness going to hunt, the laugh of the hyena and all the other sounds that fill the thick stuffed of heat air around you, but look up once the fire is just ashes and all your torches are off, with no city in hundreds of miles and certainly no large city with any real light pollution, I swear you can lay back and discover every star, your body slows and you become one with the world. For sure discovering Africa was one of the most amazing months of my life, I saw so much, joy, pain, suffering and true happiness and love and village team ship. Wow I suddenly feel very open and emotional. It’s a place I shall return too. For now I will go flip the photo albums of that adventure.

ewokonline: ultrascorponic: snuh: baravettski:1:2:nickdrake: ...

Fri, 09 Oct 2009 15:55:59 +0100

ewokonline:

ultrascorponic:

snuh:

baravettski:1:2:nickdrake:

Joe Strummer

ALWAYS REBLOG THE CLASH

(I love me some Strummer)

DITTO this man is for ever worthy of a reblog!! xx

eatsleepdraw: I love doing 80’s mash-ups I like to think this is...

Fri, 09 Oct 2009 15:55:16 +0100

eatsleepdraw:

I love doing 80’s mash-ups

I like to think this is what the war inside my body looks like of good cells vs bad!

whokilled: Play another, Chet Baker. I need music this week. It...

Thu, 08 Oct 2009 19:15:18 +0100

whokilled:

Play another, Chet Baker.

I need music this week. It always my total comfort when things get a bit crazy!

YAY my most awesome friend Mystie came to visit me...

Mon, 05 Oct 2009 16:11:46 +0100

YAY my most awesome friend Mystie came to visit me today!!!!!!!

Its the best, I am have big smile inside and out.

A got passed a bucket load of hugs from many of my New York friends so I feel extra loved today!

We are going to go to the little village and I am going to show her the best that surrey has to offer in funny little “you can find a million things you want but don’t need in this shop”, shop…

Then maybe we will come home and before she leaves again we can have a good cup of British tea and some wheat, soy free tastes nothing like cake, cake!

eatsleepdraw: Check out new comics every Wednesday and Friday...

Mon, 05 Oct 2009 13:43:36 +0100

eatsleepdraw:

Check out new comics every Wednesday and Friday at http://extraordinarylife.tumblr.com

Childish jokes but admit it most of us so called adults laugh at them, good old harmless fun! smirk!

notarobotbutaghost: my mom just got an iphone and she’s been...

Mon, 05 Oct 2009 10:40:10 +0100

notarobotbutaghost:

my mom just got an iphone and she’s been sending me pictures of my dog all morning… definitely not helping my case this weekend… I miss that awkward, gangly, ball of fluff soo much. Next year I’m getting a place that will allow me to have a dog for sure. My mom says she sleeps in my room almost every night even though she’s tried to convince her otherwise, which breaks my heart… sad face.

I feel your pain, how could you not miss this face! It’s not the right time for me to get a dog at the moment. However a friend and her husband how have come back into my life this past month and really saved me in many ways. They have a gorgeous black Lab called Paris and also a cute black cat called Lady. (I took photo’s of them when I was there for Sunday Lunch, will try and post late) The great thing is I am going to start dog sitting Paris on Friday’s, her mummy works at the children’s medical trust very near me, so on Fridays she is going to drop Paris off on me with her bed and things and then she will stay with me till about 4.15pm when mummy get of work. So I will have a Friday doggy friend, who really is so loving and gentle, she was trained as a puppy for being a dog for the disabled, but could not finish training on medical grounds. I am sure your bored with my dog gushing, but as you can tell I am rather excited about it. I love dogs!

eatsleepdraw: hello robot Good morning. I hope my friend from...

Mon, 05 Oct 2009 10:32:20 +0100

eatsleepdraw:

hello robot

Good morning. I hope my friend from sweet New York City makes it over to my place in Surrey today, guess it depends how hard she hit Camden’s bars last night. I know that a visit from her though will make today or this week even more complete and positive!

Night Night Tumblr world, night night interweb, cyberspace, real...

Sun, 04 Oct 2009 21:47:26 +0100

Night Night Tumblr world, night night interweb, cyberspace, real space, star wars and star ship’s.

Yesterday was tough. Last night was the hardest I have faced on many levels for a while. After some 4am reflection and thinking of my magic someone who helps charge up the space cowboy, and well by 5am the moon was crazy bright, the stars were almost lined up and twinkling extra hard it seemed, not long past that I managed to settle for a few hours sleep with less pain.

I woke up more positive and the day only got better, more positive, some difficult topic’s got discussed and some hard plans were discussed and the foundations to a more solid, focused, personal future were laid.

I am so tired, my body aches but there is not the pain that its been feeling the past week.

My eyes are heavy though, my heart is heavy but positive. i am going to climb into bed, a pre 10pm bedtime. I have some thinking to do and I like to lay there, after having been burning a special oil combination for the past hour in my room, I shall lay under the covers, with bear, the light from the night light, since a bad hospital experience I sometimes become unsettled in the dark, not scared but not relaxed and happy either.

So I took this photo, you can see the eye that’s had the operations as a child, is the way you can tell if I am tired, the muscles are not so strong in the eyelid and it droops, of course when I sleep it then looks like I have one eye open, so I have special cream I have to put in each night as they dry out to much, just another thing. Though I have some funny stories from tour of people thinking I was awake and such.

So here is me, tired, worn out, ready to go to bed, get into a deep relaxation to do some positive pre sleep thinking and then, well then I will hopeful drift to a happy dreamland till the morning sun arises and wakes me.

if you see my facebook

Sun, 04 Oct 2009 14:36:58 +0100

Its been a really tough 24/48 hours.

However today I feel brighter inside, spirit and soul recahrge.

A friend is on there way to pick me up to take me to her home for Sunday Lunch with her and her lovely husband.

To just make me feel that extra bit special I just sprayed my favourite Marc Jacobs Daisy purfume, the smell brightens my spirits!

I will update post lunch and the interview I am doing with my friend for her medical course at university.

Short but sweet!

Thank you to the few amazing friends that had a part in saving and recharging my fight last night!

rough and tough

Sun, 04 Oct 2009 03:53:27 +0100

Its been one of them days.

I can’t get comfy to go to sleep from the pains - near all parts that have something wrong are all playing up in unison.

My brain seems to be going at 100 miles and hour. I need an off switch.

I have tried sleeping, tired the deep relaxation.

I have written a few emails to power of distraction.

I am writing this to sign off on the day so to say and its 3:51am. I am logging off. I am getting under the covers. I am taking my extra does of pain medication and a sleeping tablet. I hope for sleep, but I will settle for deep relaxation. Bed, cover, medication and relaxing music here I come.

Tomorrow will be a better day! I feel it!