OCTOBER 2009

 

SATURDAY 17th OCTOBER…My friends husband passed away peacefully in his sleep, around 3am today. He died at home just as he and she planned. Despite being given just days to live mid September he battled to stay as long as he could. He is now at peace, free of pain and suffering. He will be remembered for fighting this disease with sheer bravery and determination and never once did he complain. Nor, did his wife who coped admirably and deserves a medal for all she has endured. I love her and her son dearly and it breaks my heart knowing the pain they’re going through. Nothing can take it away. For the moaners of this world…count your blessings not your hardships. RIP Trevor Hicks…you will be missed by so many, but never ever forgotten.

 

On a lighter note, this friend will have achieved the impossible…my daughter and I will wear a Millwall football top as requested for his send off! In fact if we can sort the whole kit we will wear it proudly just for him. I have managed to find a signed Millwall top I can wear and then give to his son as a keepsake. Fingers crossed the postal strike doesn’t scupper my plans!

 

My daughter has to go into hospital for an operation this week and Slough Social Services have scored a hatrick. They have refused for the 3rd time to give me any help in caring for my grandsons or helping with transport to/from nursery. This will leave two young children, one of whom suffers autism/ADHD in the sole care of Moi who is not allowed to drive…a stroke patient whose knackered unrepaired artery could re-rupture at any minute, who suffers TIA’s, epilepsy (often triggered by the kids running around boisterously), memory problems, difficulties with roads etc fucking etc. If I go down with two young children (one of which has already witnessed my first near fatal brain haemorrhage that occurred after a doctors misdiagnosis of depression) in the house and they come to any harm be it on their bastard heads. Jesus christ, I struggle to lift the youngest on a good day, let alone a bad day in serious pain or if he is throwing himself around. I forget to feed myself and dog and take medication…let’s hope my eldest grandson reminds me to feed them at sensible o’clock. You can quite often find me eating breakfast, lunch and dinner at 2am when I remember I have not eaten. I only use the cooker when others are around to make sure I turn it off…so they will only be able to have microwave food. I do as much as physically possible to help my daughter and the boys, as she does me, BUT to leave them solely in my care with no assistance whatsoever is NEGLIGENT of Slough Borough Council. The truth is, that unless I am licking windows whilst sat in a pile of my own shit and piss, dribbling uncontrollably I will get no help (this comment is not meant to be derogatory to any person who suffers these disabilities BUT to highlight the severity of incapacity needed to warrant help). We never ask for help from anyone as a rule, preferring to struggle ourselves but the help we have actually asked for is:

 

A lift to and from nursery for two days.

Someone on standby should I need help OR be taken ill.  

 

DO NOT believe the hype in the media about improvements to Social Services since the death of Baby P and abuse of elderly being exposed. It is all exaggerated claims to instill confidence in the sheeple who are ignorant enough to believe it.  Every area of social care is failing as miserably as the NHS and all other government-run organisations. People are dying and being killed in hospitals, children are harmed, elderly are abused, people are homeless, people with mental illnesses are shunned etc etc and “The System” does not give a rat’s arse!  Thank goodness for sites that keep us up to date and reliably informed on all aspects of health and social care like   NHS EXPOSED

 

One good bit of news is Heatherwood and Wexham Park Hospital is finally under scrutiny by the government health watchdog, Monitor.  TIME 106.6 NEWS reports on the 5th October 2009.  Management and financial practices have been inadequate. Woo Hoo this is music to my ears. Let’s hope they also weed out, the lying scumbag consultants who falsify patient records to cover negligence. Oh and their secretaries who alter dates/facts to help them out. Have to admit though, it was rather funny when I called said consultant neurologist on his lies told in front of a hospital manager and he immediately pointed the finger at another saying ” I only took advice from the Professor” (one of the sneaky lying scumbags mentioned on my website) . Treat me like a fool and I will bite you on the ass whether you wear a suit or not! Doctors do not treat your patients like fools…some are intelligent enough to learn about their illnesses and some are clever enough to uncover lies and deceit.

 

NEXT ON MONITOR’S LIST SHOULD BE THE DECEPTIVE STAFF WORKING IN THE NEUROLOGY AND RADIOLOGY DEPARTMENTS AT CHARING CROSS HOSPITAL AS THERE IS NO ROOM FOR THESE SCUMBAGS IN A SUCCESSFULLY RUN HOSPITAL. BENT AND CORRUPT DOCTORS NEED TO BE OUTED! PATIENT HEALTH AND SAFETY SHOULD COME BEFORE ELITE CONSULTANTS WHO LIE AND ABUSE THEIR POWER AND PATIENTS.

 

UPDATE : It is reported on the 16th November 2009, that Dr Tim Lincoln, the man responsible for running Wexham Park Hospital has resigned just weeks into Monitor’s investigations. His resignation follows a clash with Monitor, the government health watchdog. When the going gets tough, the weak bail out!

Dr Lincoln’s post will be filled by Chris Langley, the former managing director of Dixons. Because we all know running a hospital is just like running an electrical appliance company. So, if you leave hospital fitted with a DVD player instead of a pacemaker, we know why! 

 

The full story can be read here WEXHAM PARK HOSPITAL BOSS RESIGNS 

 

I am not doing a write-up as such for this month…although this piece is longer than I intended. My heart is not in it. All I can say it has been a month of heartbreak. It started with a funeral, will end with a funeral and I learnt of 4 deaths of people I was close to, the death of a friends son and the suicide of a cyber friend. A few years ago, I lost my Great gran a week before Christmas and my aunt less than two weeks into the new year…I can only liken the feeling to this, horrendous. I name this the shittiest month in a long time and hope for a peaceful, happier November. Although I should add my life is ok, just sadness and stress around me. Forgive my swearing on this blog, but you know what, that’s how I feel. ANGRY!

 

Oops I nearly forgot my manners. A really big heartfelt THANK YOU goes out to Mr OR Mrs Anonymous who has been doing their own bit of magic behind the scenes. I have just spotted the fruits of your efforts. I don’t know who you are, BUT thank you for helping me out. If you are now sat there thinking “does she mean me” the chances are, I probably do. Would love to know who you are.

 

UPDATE : I am quick enough to write about poor NHS healthcare I feel I must do the same when good care is received. My daughter has returned from her operation with nothing but glowing reports for Wexham Park Hospital. From the minute she arrived to the minute she left everything was perfect. She could not fault one thing and even had her own room!  Everything was performed on time and the ward was immaculate.  She said the staff were lovely and friendly and couldn’t do enough to help. They also managed to keep a straight face, when they asked my daughter if there was anything they could do for her when she came round. She replied “can you please ring my mum and let her know i’m ok and my kidneys have not been stolen and sold on ebay”. So thumbs up Wexham Park Hospital on this occasion.

 

AUG/SEP 2009

 

Just dropping by to say a quick hellooooo and let people know I arrived back safely. We had a wonderful holiday, but unfortunately it was tinged with some real sadness. A short while into our holiday we were notified that my friends son had died whilst on holiday in Greece. He was on a moped which was hit by a car and whilst initially it was thought he was ok, a while later he sadly died. Just 19!  We were unable to make his funeral as we were still away, so I attended a mass service at The House Of The Virgin Mary to say prayers, light candles and tie wish ribbons for him and another friend.  My son who was in the UK attended his funeral on our behalf. I will add a memorial page for him on here shortly. He was a lovely boy with his whole life ahead of him and family/friends are devastated.

 

GREEN RIBBON TIED FOR DANIEL

 

Shortly after this news, I learnt that my best friends husband had taken a turn for the worse in his battle with laryngeal cancer. My friend did not tell me the full extent of his worsening condition for fear of ruining our holiday. Now is not the time to write more here BUT I hope one day to elaborate more on this story and the negligence involved. The day after landing she broke the news he is in his final days. Everyone in our group and his family are devastated and he will leave a precious 9year old son!

 

GREEN RIBBON TIED FOR TREVOR

 

So forgive me for not writing about our holiday yet, but it is irrelevant at the moment. I will write a page about it shortly and share many beautiful pictures.

 

 ME AFTER TYING RIBBONS

 

MY GRANDSON AFTER LIGHTING CANDLES

 

Apologies for not writing more and for being slow at emails and blogs I am playing catch up rather slowly. Since originally writing this post, I have lost another dear friend and cannot believe all the sadness we have returned home to. It just shows, you never really know what is round that next corner.

 

The only thing that was actually a pleasure to come home to, was my beloved demon/homi dog. I missed him so much while I was away. He went absolutely mental on seeing us…nice to know he missed us too. I used to get my son to hold the phone to his ear and chat to him but not the same as hugging and being with him in person. I am now struggling to walk him so have to pay and have him walked. Not sure whether I have lost strength or he has become naughty with pulling on lead while I was away. Did not see this coming!

 

 

JULY 2009

 

OK, I know, I will be late for my own funeral. If I had a say in the matter, I wouldn’t actually be there full stop. No real excuses for not writing this up sooner, but life in the real world has been pretty hectic and not been on the PC as much as usual.  Just dropping in for a bit here and there when bored or time allows late at night. The summer break means I spend more time with my daughter and grandsons…that’s when I am happiest. They are “the husband” in my life.

 

No medical news for me this month as I am about the same. Still in some pain and always exhausted but as my doctor said over a year ago “this is probably as good as it gets”.

 

We celebrated my eldest grandsons 6th birthday this year and I have to tell the world I am really proud of him. Time has passed so fast and I cannot believe how quickly he has grown up. It frightens me a little knowing he has to grow up facing the challenges of today’s world. He is a wonderful little boy who is exceptionally bright and doing really well at school.  He excels in all subjects and nanny teaches him the horrors of life. He can tell you all about not drinking and driving. Not fighting. Not doing drugs. Why he must do well at school. What to do if he spots a fire or gets lost etc. He is a whizz on the PC and knows all about viruses, spyware, emails etc. When we get back from Turkey, I am going to try and teach him how to build a website.

 

My youngest grandson is also a little darling and I feel a bit sorry for him, as he sometimes gets overlooked when dishing out praise. I love him dearly but have just bonded with him a little less. Partly due to my health (he was called the baby for the first months of his life as I couldn’t remember his name) and partly due to the fact he has autism and ADHD with slight deafness in one ear, I find him harder to cope with. This is getting easier now he is being treated and we know why he behaves the way he does. He is now medicated, receiving speech therapy and attending nursery two days a week. Oh and yes we had to battle to get this help because he is so young. Had the authorities had their way they wanted to leave action until he was 5! A child with no diagnosis or help does not cost the NHSa penny! Believe me they will not get away with neglecting another member of my family.  The progress made so far is astounding and he is coming on in leaps and bounds. This week he managed to say ” I love you nanny” and it was understandable. I wanted to cry. Can’t understand much else but it will come with time. He is to have an MRI brain scan shortly as there are also some other serious concerns…and this scares me. In fact I am not even going to talk about it.

 

Demon dog is now homi dog. Not in the queer sense but as in homicidal.  His new trick is to run to the top of the stairs, wait for you to reach him at the top and then he pounces! Tries a quick shag of the leg, then runs like a nutter. Not happy with eating everything in sight, now he is trying to kill me. I have worn more cups of tea this month than I have drunk. Problem is, it is not just me he does it to. Luckily I have tolerant friends and family. Love me, love my dog.

 

A couple of people have asked why I do not mention my son very much in my writings. What can I say?!  First off he is a very private person and second, he is a little wild for my writings. He thinks life is one long party and our perspective on life is very different.  After the NHS he is the biggest cause of worry in my life. I think that answers the question pretty well. There is a rare pic of him below.

 

 

I recently completed a small contribution to a book that is due out shortly and just thought I would give a little mention here. The book is called “Can You Hear Me? – A Collection of Letters To The Other Side”.   If you would like any more information please visit  pmadams blog where you will find all of the latest updates and news regarding her book. The author has a nice site and you may like to check her other blogs too.

 

I was notified mid-month I have a new editor. This was scary news, as at the same time she warned me she could be a dragon and liked work to arrive as edit free as possible! Ha Ha if she could see the notes and scraps of paper everywhere before the article arrives to her.  Personally, I think she’s pretty cool even if she did tell the previous editor I thought he was a tart. This is one strong determined woman and when I grow up I want to be like her. I WILL GIVE EDIT FREE WORK. I WILL GIVE EDIT FREE WORK. If I say it often enough maybe it will sink in.

 

It was also suggested to me this month to look into freelance writing  health based articles. I love doing the research and love to learn and write. So could be a win win situation in solving the possible need to be working from home. The ability to make a living from home would also enable me to work on my dream of moving to southern Spain. The thing holding me back is knowing I would struggle to make enough to live on with my health and I am scared of moving abroad alone. It is becoming clear that to return to my old work is physically impossible still and might never be an option. So I will be giving this a lot of thought. Thank you to the people who believe in my ability and take time to help and advise me.

 

Well, I didn’t win my holiday for free!  Hectically now making all the last arrangements and off shortly. I am having bad panic attacks about flying…almost to the point of vomiting. Absolutely hate it and feel like shit for 2/3 days after. I get horrendous pressure in my head, hearing and balance problems that are worse than normal and pain like you wouldn’t believe. Whilst there is no risk of flying with repaired aneurysms or non problematic aneurysms there is proof of a “slight” risk with damaged non repaired ones. So if I pop on take off or landing it’s been nice knowing you all and I will see you on the other side.  My daughter and grandsons are now coming with me and I am very excited. I adore going on holiday with them and it is the icing on the cake for me. It hasn’t been easy to arrange at the last minute and fraught with problems. Her boyfriend was meant to be coming too but they have now split up…which was a shock! I am passing judgement in neither direction but it obviously wasn’t meant to be.

 

This may be my last blog on here for a while as I am running out of time to do things. So all that’s left to say is have a wonderful summer wherever you may be and live, love and laugh.

JUNE 2009

The most important thing for June was meeting my new niece for the first time. She is a bit of a surprise baby but I have to respect privacy on the details. Hence, she is two months and we have all only just found out about her. She is absolutely adorable and such a happy content little girl. I will be seeing alot more of her…despite thinking out loud “oh the poor baby has red hair”. My brother knows what a plonka I can be and the red hair thing is an ongoing joke in our family. He is so proud of his daughter and rightly so, she’s a cutie.

June can only be described as a very pleasant month. Beautiful weather for the most part and feeling a little better healthwise really makes the world of difference. I am now not having to take painkillers on a daily basis but as and when I need them. Believe me taking tramadol, being excessively hypothyroid with the iron problem (my levels are now  hitting 6 so a long way to go) and activeness does not go hand in hand! Not to mention other health issues. However, whenever my health lifts a little I get as much as possible done, as I know how quick it can relapse. I normally crash about a month after my body has adjusted to the new dose of thyroxine. Mind you the first month of an increased dose gives me a very welcome burst of short lived energy. My lips are still tinged with a lovely blue (cardiologist who was a lovely man signed me off some time ago confirming it was not  heart, but brain related) that isn’t worse but hasn’t gone.

 

I have had no funny turns for nearly three months and while I don’t want to build my hopes up, I am hoping to get back to driving again. I need this so much as a hope of getting back to work. At last request DVLA said yes BUT my neurologist said no. I just love the way everyone agrees, it makes things so simple. Not only that because DVLA said yes I went and paid to put my car back on the road for a year just for the neurologist to say no a month later…a total waste of £500…why…because there’s no communication. A major flaw throughout the whole of the NHS.

 

I have been really bad this month!  For those of you who know of the struggles I had quitting smoking…I have started again! I am not going to defend my stupidity, I know how silly I am. I did so well not smoking after the haemorrhage with only a few slip ups, but this is on a daily basis as opposed to the odd slip up. I will give up again but for now if I want to smoke I will. I never wanted to give up in the first place…I only did it to keep doctors off my back and family happy. Gordon Brown pledged “excellent healthcare for those who looked after themselves” AND it was utter bollocks! I was a non smoking, non-drinking, healthy eater who took regular excercise and maintained a perfect healthy weight…the healthcare I have received was abysmal. Just another bout of lip service from good old Gordy!

 

As the weather has been so good I made use of long days to potter around doing my garden. Demon dog has had a blast doing his damage out there. I have managed to get loads done and even laid another decking area myself. I had been waiting for help from “the men” for ages and could no longer look at the bits just sitting there. So in a “stuff you all I will do it myself” moment I set about doing it and was determined to finish…if it killed me. And boy the lifting nearly did! I think I did a really good job, even though it took me a month to do what could of been done in a few days.

The online petition I created went live online on the 26th June 2009 and will run until 26th December 2009. After the tragic story of baby Grace Vincent I hope the British government will now seriously consider reviewing their decision and legislate routine screening for group B streptococcus as standard in pregnant women. Grace Vincent quite remarkably survived but not without blindness and possible brain damage. No other baby or family should ever have to go through what this family have. This was PREVENTABLE had screening been available in the UK as it is in the USA and other European countries.  Our government has already been petitioned on this by the GROUP B STREP SUPPORT charity and others and declined to introduce legislation. Because of their ignorance and unwillingness to introduce new legislation there have been further deaths in newborns and babies born into a lifetime of disability! So far support of the “new” petition is low, so if you agree with the request to try and change things could you please take the time to view/sign/pass on to others…your support is appreciated.

 

http://petitions.number10.gov.uk/streptests

 

I also want to give someone else a little plug this month. He’s a fab guy and has one of the best live streaming sites going. Always on time and the quality is second to none. Football, F1 he’s got it all and it’s definitely a must visit for all you sportheads. The site is free but donations would be nice if you get satisfaction from the site…he runs it all off his own back and puts in bloody long hours to run this for YOU!  Check the site…you’ll love it.

 

www.lagerassassin.com

 

I am working on the mammoth task of putting a catalogue of my records together. I was going to sell as a job lot (keeping my faves of course) but decided the financial loss would be too great so need to catalogue and sell seperately. Organising and ordering is something I now struggle with so it’s a big task going through 1000 +. All I am allowing myself to keep is one crate. Whilst I have no intention of DJ’ing I am still not quite able to just “sell the lot decks and all”. Whilst sorting have had a few bouts of mixing here and there and whilst it is not something I would want to do or cope with daily…it really frazzles my brain…having to concentrate and the noise…I did have fun. I did however decide I may work on getting a triple pack CD put together as a one off project. That will please a few people and depending on what I come up with may try to release it, with the proceeds going to my two favourite charities. It all depends on my creative juices and how much I can get it together.

 

On the subject of music, got one more little plug for a good friend who deserves it. See Seanie Baby I remembered your plug…I will now await a scrummy Thai meal as I cannot make the gig!  For all you punk lovers out there, you must check out OPEN SORE. Reformed, and performing  70’s punk at it’s very best. Think TubewayArmy and TubewayPatrol…Numan eat your heart out these guys rock!  Gigging details are on

 

http://www.myspace.com/opensoreuk

 

Alternatively just google OPEN SORE PUNK BAND

 

I am going to end with demon dog this month. He finally ate my last tea towel! Spent a week using kitchen roll (protesting against buying him more to eat) to dry up  until it ran out. Then remarkably not one person complained at the smart price bog roll stuck in various places on their cups or floating in their drinks. Had they of complained, they’d probably of got a sharp piss off and get your own flippin tea towel…out of my dogs arse!  The only thing demon dog did, worse than eating the last tea towel, was eat his muzzle. What’s wrong with that you say?  He’s an eater. What’s wrong with that is “it was on his friggin nose at the time, to stop him chewing”.

 

MAY 2009

Sorry for not coming in, back in May to do this post but I have been a little lazy writing and real life sometimes just gets in the way of the cyberworld.

Well, I have finally started feeling a little better this month. Still in pain and exhausted all the time, but slowly improving.  My bloods came back and I found out I was on the wrong dose of medicine and the high dose iron treatment on top of this, was further reducing the effect of the medicine. Doctor had failed to mention the two lot’s of tablets should not be taken together. So one medicine increased and tablets separated…how f’in simple was that…shame I got to the bottom of  seperating the tablets problem via my trusted friend google…instead of having a competent doctor. Nightmare now is, I have to remember to take tablets twice a day!

Gordon Brown’s office did not get back to me…surprise surprise…however I was sympathetic enough to realise, a response would be highly unlikely at a time like this. I believe keeping oneself  out of The Priory is hard work and time consuming!

Alan Johnson’s office actually had the courtesy to reply, even if it was bog standard spiel. The sort of spiel their loyal sheeple would accept. However I am not a loyal sheep (other than to friends and family) I am an extremely pissed off woman.

They were kind enough to offer their condolences on the death of my mother and apologies for my lack of care with the wish of better health for me. Then had the audacity to tell me how effective  the complaints procedure will now be, as it was overhauled in April 2009.  Does rolling on the floor with laughter count as a comittable offence because I’ve been doing it a lot lately?! The best bit was the signature…signed by…”I’m a jobsworth in customer services who does not give a rats arse”. Shame on you Alan Johnson for not responding personally…your voodoo doll is getting another pin shoved in it Sir!  You have now earned the title “leperous rock of camel snot” in our household.  Andy Burnham be warned, your doll arrives shortly.

How could I write a post without mentioning my ever faithful dog. I kid you not, not one of the stories you read about him are not real events. He is an absolute terror. Loved but wild as hell. Should of called him Lucifer!

I was sitting on the computer one night last week when all of a sudden everything went off. I thought it strange as the lamps had switched off too but not the main lights. So not a power cut like I first thought. Went downstairs to check the fuse box and on passing the kitchen noticed my dog was laying on the floor whimpering a little. REASON…a piece of his bone and toys  had gone behind the fridge/freezer. He’d been pawing behind it to get the bone or toys, found the electrical wire, munched through it and electrocuted himself. His second electrocution from the same source…and with a muzzle on. Fridge flex is now 18inches long instead of 4ft!

For those of you who are squeamish do not read this bit. My dog is an eater who eats absolutely anything and everything, a common trait unfortunately, in American Bulldogs. For those of you who are not familiar with this breed, think back to the film Homewood Bound. Big bundle of slobbering love!  Not happy with just electrocuting himself he decided to treat himself to extra munchies this week. He has eaten 15 thyroid tablets, packet and all, and been charging round like a nutter ever since. And the best bit…the case of the missing tea towel is now solved. I always know when he’s eaten something, it’s the same routine every time   now.  Good munch and then me chasing him round with a bucket, every time he’s sick. However, this time I found myself at 6am in the morning, leaping out of bed (not easy for me takes me a minute to get my bearings but no time for this) in hot pant pyjamas (not expecting mad dash outside) to a two foot tea towel swinging like mad, hanging from his butt. He was charging round in fright and pain and I had a mad rush to get him to the garden. Yep you’ve guessed it pouring with rain!  We are then both covered in mud, soaking wet and it took 15 minutes to cut and retrieve most of the tea towel which was still attached inside so had to be done really carefully. Not a glamorous job and who needs a flipping alarm clock!

Did I mention the 8 beds he has eaten? Or the fire door that is no more, due to right bottom corner demolished?  Or the 2ft peice of rubber vet found twisted round his gut?  Oh and he loves thongs and bra’s (clean I might add) just like any guy!

I have had the biggest nightmare with travel arrangements ever this month. My daughters circumstances have some what changed, and Spain has had to be put on hold for now. She also does not want me going for any more private scans at my cost, insisting I demand a new care team within the NHS like I am entitled to. So as not to lose out on the holiday away (so much has changed in my life the one thing I refuse to give up is an annual holiday) or any money I transferred the flights to Turkey to do plan B. My friend could then not come away with me due to the recession so different accommodation was needed. I needed a hotel instead of the studio apartment. Finding one in the same location was impossible and because of booking on the net we lost a couple of places, due to time on email turnarounds. We couldn’t just book it as we saw it because previous accommodation was already paid for and being transferred, not a fresh booking. Eventually after much distress, worry and fraught times with the company, who in the end after learning of my health problems were very good, suitable accommodation was found but in a different location. Still with a bargain price tag (£411)…and good use for the money I put by for my brain scan. A couple of people have asked me how I get such cheap deals, so I will post a little blog about it shortly.

Today, it just got better…I received an email from the company saying my name has gone into the draw to receive my holiday for free! Well, the cost of  my hotel as I booked all parts of the holiday with seperate companies.  That was my good karma being returned for offering to cover all of the accommodation cost if it meant she could come. I hope luck shines on her and she can come. She thinks I am brave doing it alone as I will struggle with things immensely. Struggle with roads in the UK imagine the chaos in Turkey. My daughter is petrified of me going off alone and it’s not often I admit my weaknesses or fears, but so I am. She is worried I will end up dead, undiscovered in some hotel room being fed off by cockroaches and flies!  I have not travelled anywhere of distance on my own since being ill…so this could be a really silly idea, BUT I no longer live in a world of what ifs. Those who know me well, know I have a list of “things I want to do before I die” and seeing the ruins of Ephesus and the house of The Virgin Mary is on there, along with Pammukale and others, so I have to go. Some may find it morbid to have a list like this, but I reckon everyone should have one.

I have always sworn blind I would move abroad before I collect my wooden overcoat, so this will be my big test to see if I could cope alone, abroad, post SAH. Time will tell, the worst that can happen is it all go wrong. Or my daughters thoughts come true…God forbid!

May 24th was my three year survival anniversay. I won’t say I’m fighting fit but will say “sucking air” is great. Life’s not perfect but could be a lot worse. This day is also the birthday of my beautiful Aunty who died from non hogkins lymphoma. Another wonderful person gone too soon. She recieved her diagnosis too late and by the time diagnosis took place, she was in stage 4 and passed away after 18mths of gruelling treatment.  She is so sadly missed by our whole family and will never be forgotten. I spoke to my uncle on this day to let him know I was thinking of him and to hear a man so sad and broken cuts like a knife.

I had taken up trying to learn Spanish AGAIN! This is my 3/4 attempt and even with help, I just cannot get it. I don’t care what anyone says, it is a bloody hard language to learn and I really cannot do it. I was willing to try  (that’s what counts in my eyes)and I accept defeat and know when I am beaten.

I’ve found out a couple of people have been following my blogs without me even knowing it. It just shows, you never know who could be reading. Welcome aboard to you!  One guy got so attached to my blogs, he has been caught taking them and printing my work on his site. Why someone would want my blogs on their site is beyond me. I would of just sent it to him if he had asked…no big deal. On closer inspection it was found all the stuff on his site is stolen from  myself and other bloggers, much of it copyrighted and forgot to remove our names. And was blogging under the name of someone else. Cheeky beggar!  Having said that everything he has taken, he has tried to rewrite. Not having a good level of English some of it makes for hysterical reading. The site has now been removed.

APRIL 2009

Woo Hoo celebrated my 39thbirthday this month. Didn’t do anything flash or wild as I haven’t felt too well, but it was another milestone for me.  Had a lovely day with my kids and grandchildren and bought out the  BBQ for the third time this year. When the sun shines, out it comes. I’m not really a gift person but I must mention the beautiful orchid my daughter got me. It was absolutely beautiful, until my demon dog destroyed it! She was so upset.

He has been wilder than ever since being poorly and is in serious need of some dog training sessions. He is really dominant and although he knows exactly what I say, he refuses to listen to me when told what to do. Where’s the dog whisperer when I need him?

I have had to do some deep thinking this month…had plenty of time for that feeling so unwell. If I am not going to regain my health to full capacity, I have to plan where I am going in life from now. I had hoped to be back in work long before now but my health is showing zero improvement. Still battling with iron levels/iron saturation and that something is depleting my iron (this was diagnosed when I went private they said the cause of depletion needed to be investigated but the NHS doc said it didn’t just take more iron) , so the exhaustion is just not lifting, despite taking 600mg of iron daily for the last 9months. My bones ache from top to bottom, I mean that literally, even my toes hurt. The only reason I am given for the widespread pain is my thyroid problems and I am just told take more pain relief . Well surely if that was the case, the pain would lesson as my thyroid levels improve…not get worse!

So where do I go from here? Do I give myself more time, or face facts that this will be as well as I will be? I talk to other people who have been through a subarachnoid haemorrhage  and I know many others feel the same way. It’s like living in limbo!  I want to do so much more in life than just exist. I love my home but the same walls are driving me mad. May will be my month of self improvement and decision making.

I feel awful complaining as I know there are others far worse of than me. Just sick of feeling sick…pun intended.

I have contacted Alan Johnson the health secretary, my MP and Gordon Brown today…curious to see if they will help with my medical issues. Or will they prove to be as useless as the complaints system failing myself and many others?  Anyone up for bets on the results?

I won’t hold my breath. Blue doesn’t suit me!

HAPPY EASTER

Forgive my brief post here, I am off to stay with my daughter and getting ready to leave. I need rest and fattening up as she put it, so I am looking forward to being cooked for and pampered. Did not want to go without wishing everyone a very happy easter. Happy chocolate munchie day to one and all!

MARCH 2009

Firstly, my apologies for not adding to this blog as much as I intended, time has been scarce and I am so exhausted at the moment. I have been buried under a mountain of medical paperwork and the errors and deceit just keeps on unfolding. ICAS (will dedicate a separate page to them as they so deserve it) are no longer helping with me with my apalling medical care, so I am tackling it alone. No longer within legal time limits to sue those responsible for failings in my healthcare, but I will continue to expose the failings here and on my site.

My beautiful puppy has been through more major surgery! This time for a blockage in his bowel.  Almost unbelievable really. First we were sold him with a tumour, now this. He has amazed the vets by pulling through, as they didn’t think he would survive…at one stage suggesting we put him to sleep! I was absolutely devastated but as he was not in pain or discomfort due to pain relief I decided to go with the option of round the clock care. He is still on a 3/4 hourly feeding routine but well on the way to a excellent recovery. He has drained my energy and penny pot, but well worth it. He has a death wish and the will to live, in equal measure.

Had a wonderful Mothers Day, spent with my children and grandchildren. We did the typical British scramble to the supermarket to find charcoal for the BBQ…NOT easy to find in March! The sun was shining and when that happens the BBQ comes out quick, as we never know when the opportunity will arise again. We spent the whole day in the garden only going in when darkness fell and the temperature dropped. The day was tinged with a little sadness, as we woke that morning to the news that Jade Goody had passed away in her sleep, after her short battle against cervical cancer. No matter what peoples thoughts are on Jade Goody herself, she can only be commended for the way she fought this terrible disease. The fact she passed so young at 27 and leaves two young children is very sad. Let’s hope Max Clifford takes on the challenge of bringing to task the hospital where she was misdiagnosed 3/4 times.

FEBRUARY 2009

Well, after times that were truly sent to test me, I am finally breathing a huge sigh of relief. My beautiful puppy is healing nicely and back to charging around like a lunatic. There’s no lasting damage and fingers crossed, his scar should hardly be noticeable in time. He’s had the time of his life this week as school is out for half term, so my grandsons and daughter came to stay. Lot’s of “very muddy” days at the park, enjoyed by all. My washing machine has been on overdrive. I will miss them when they’re gone, but oh for some peace and quiet!

My website is almost rebuilt from scratch and is almost back to how it was initially… www.freewebs.com/nikki-jenkins  My computer is waiting for the doctor and extra security to be installed. Bitten once is enough for me.

ICAS…oh dear…what can I say! My advocate is one of the sweetest ladies ever, but nothing gets done!  She fails to show when she’s meant to, forgets to call as promised and reminds me more of a lady suited to the WRVS than a complaints service. I did a little research on ICAS after my latest pointless meeting and I think all my questions are now answered. ICAS is funded by the DoH and advocates are “NOT TO ENCOURAGE” complaints. So basically ICAS is just another crooked government set up that eats a huge amount of funding but does very little in helping patients achieve their complaint. Now why doesn’t this surprise me?!

We have finally got it together to book a trip for Spain. I am going as a medical tourist, to have my brain scans that are now due, done. I am going to have other tests whilst there…much cheaper than going private in the UK. Since I found out doctors at Charing Cross and Heatherwood hospital were lying to me over my condition, I no longer have any trust in the UK’s NHS. It is a joke! You’d think after nearly killing me with medical negligence, they would get their acts together and provide an acceptable level of care…no chance. Too many clowns not enough circuses! I can no longer travel alone so my daughter and grandsons will accompany me. Flying really does me no favours any more and even the shortest of flights affects me. The airport is also a major hurdle as I don’t cope well in busy/noisy environments anymore. Flights and medical care aside we will enjoy a relaxed time seeing the sights and hopefully some warm weather…which always makes my bones feel better.  Now just got to get a sitter for my lunatic puppy.

JANUARY 2009

The good wishes for a happier, healthier New Year came thick and fast, but boy did the planets have other ideas. Never have I known a more stressful month, from start to finish. New Years day started only 2hours after going to bed, with a phonecall informing me, my son had been beaten and robbed on his way home, from New Year celebrations. His face and body was battered and bruised and his new phone gone. HAPPY NEW YEAR!

Only a few days later we learned my pup, Patch had a tumour on his neck and he needed urgent surgery to remove to remove it. The surgery went well but waiting for the biopsy results…was hell. At just five months old he shouldn’t be going through this. The biopsy was all clear…canine histocytoma. Try getting a large wound, in that area on a pup to heal. Weeks later and two operations down the line we’re still trying! His third operation is tomorrow.

Mid month I had major issues with my nan…believe me people, this is not a woman you want to tangle with. Never have I known such a woman. Her complaint with me was, she objected to some “TRUE” comments written on my website and when I refused to remove them, bombarded me with abusive and manipulative emails. A friend read the emails and was horrified a grandmother could write such things.  So I told my nan ” I want no more to do with you”. She is toxic to my health. Her negative behaviour has caused so many issues within our family spanning four generations! It is sad that our relationship has come to this. We have had many fall outs over the years and the end result is always the same. Sometimes people have to let go and move on. She told my mother before I was born “that child will never call me nan” and you know what, I never have. Along with 9 other grandchildren who also don’t. I find that very sad and don’t understand the mentallity of any grandmother who could do that. Less than a week after the fallout my website was trashed/hacked…coincidence maybe…but I think not! The only other source who would like me silenced is our NHS. Two months of hard work now has to be replaced as the site needs to be rebuilt. IT WILL BE REBUILT…despite her or the NHS’ wishes. Or anyone elses.

I was contacted by Charing Cross Hospital, with a long awaited letter, informing me they have “LOST” vital notes and scans of mine. Our NHS just gets better and better. I like the added comment “the loss of these notes has in no way impinged on your clinical treatment”. That may be true as they were available when I was initially treated but what it has done is “HIDDEN THE EVIDENCE OF WHAT TRULY HAPPENED REGARDING MY SUBARACHNOID HAEMORRHAGE AND COVERED THE BACKS OF DOCTORS WHO WERE MEDICALLY NEGLIGENT IN TREATING ME”. My ICAS advocate is calling next week after failing to show twice last week, for a complaint. When she visited last time, no complaint could be upheld because ICAS delayed our meeting for four months and by the time she arrived, the complaints were out of the imposed time limits. The irony was she asked me “did I want to complain about them for the delays”. Do I want to complain about the people who are there to help us complain!!! What a joke…obviously ICAS are not the helpful organisation they claim to be. They are more linked to the NHS and government than they imply. Incidently as a side note she clearly stated I should be suing!

My good bit of news for the month is I have met some wonderful people, who have restored my faith in human nature. Some have helped with the computer issues and others with lifts to/from vets with my pup. Others have just listened or lent me that much needed shoulder.

I have also been asked to write for another website, that exposes failing NHS standards, regularly instead of being a one off guest blogger. So ending the month with a smile on my face, instead of a frown!