JANUARY 2010

 

Well, today was the day we all learnt there really is no justice in the world when it comes to negligent doctors, who snuff out the lives of living patients. Dr Death…oops sorry I mean DR JANE BARTON has been found guilty of serious professional misconduct BUT been allowed by the General Medical Council (GMC) to continue to work as a doctor despite inducing the deaths of  patient’s. The “true” number of people put to sleep by this doctor will probably never be known. But I know, just one death is a death too many. Even now, more relatives are coming forward with suspicions that harm may too of caused the deaths of their loved ones. MURDER AND MAIMING without accountability in the NHS has to stop NOW!

Taking the life of someone, with a viable lifespan amounts to murder in my opinion and it seems that nowadays, anyone with the title Dr can get away with it. We have seen over and over again  how corrupt the medical establishment is and the truth is there’s not a damn thing Joe Public can do about it. Except expose it. Only a minority will ever speak up or take action. An apathetic nation who allow it to happen. A corrupt medical establishment who allow and encourage whitewashing and deceit. And, at the very top, the feeble government who turn a blind eye and ignore the pleas of their people. Ironically the GMC who state “she should be struck off” are the very same medical body who have “allowed” her to keep her job!

How convenient…Barton verdict today has little press coverage as Blair hogs limelight! How controlled was that by the government and media. We already know what a deranged war criminal Blair is, BUT how many average Brit’s know today, not only was a killer allowed to walk free she was allowed straight back to her job as a medical professional able to do exactly the same again. This just highlights what medical bloggers and campaign groups are truly up against. I speak from the heart when I say this “Please listen to the words of medical bloggers and justice campaign groups, who are trying to create safer healthcare for all. We do not lie. We do not aim to create fear. We merely highlight the truths that people are prevented from hearing…you just have to read the many websites from people all over the U.K. who have experienced horrendous, sometimes deathly care. If you the people want to see improved healthcare you need to get involved. For medical bloggers and people who have already been killed or harmed by the NHS the damage is done and will last a lifetime. WE are now trying to prevent the same things happening to you and your loved ones. We the bloggers and campaign groups cannot do it alone. WE need YOUR support…Do not leave it until it affects you directly”.

My heart goes out to ANN REEVES OF THE GOSPORT WAR MEMORIAL HOSPITAL COVER UP and all the families who had to watch this monstrous witch walk free today. When her time comes, may she rot in hell. You have all been to hell and back in your quest for justice…today you have been failed abysmally…I am so sorry for you all.

 MORE READING ON DR JANE BARTON

 

JANE BARTON SHOULD BE STRUCK OFF

 

DRUGS LED TO DEATHS OF PATIENTS

 

A STRIKING LIKENESS TO SHIPMAN ME THINKS

 

Ann Reeves, whose mother, Elsie Devine was put to sleep for no reason by Dr Barton, is currently running a petition to make sure changes in the law are put in place to safeguard us all. This petition affects each and every one of you, please use the link below to sign it. Pass it on or share on medical blogs and networking sites. Thanks.

 

ELSIE’S LAW PETITION

 

 

 

DECEMBER 2009

 

I hope you all had a fabulous Christmas filled with festive cheer and hope Santa spoilt you all rotten. I only wished for one thing this year and nearly got my wish of seeing a white Christmas, but sadly where I live it melted Christmas Eve. Just typical of my luck! Lesson learnt. Your wishes will always come true, just not necessarily when you want them to. However, everything else was just perfect and for that I am so grateful. I had my son, daughter and partner, and grandsons to stay and amazingly there was no friction…well, until New Year! Everyone loved their presents and the kids did their usual chocolate for breakfast thing.  I managed to cook a perfect Christmas meal for 6 only burning the potatoes which kindly no one mentioned…but failed with all the table organising and serving dishes at separate times. The following day managed to desecrate a pan of carrots and the pan they were in. Even with people supervising me I can still take out the sturdiest pan! Also had a sudden surprise visit from my grandmother and it was actually very pleasant. I will say no more for fear of jinxing the situation. There is a lot of water under the bridge and no doubt troubles ahead with us but this was a step in the right direction.

I know many who go through tough times over the holiday season and this year was particularly hard for lot’s of my family, friends and acquaintances. We toned ours down a little from previous years and I did not put lights or decorations at the windows, as I felt it would not be right in view of my next door neighbour burying her child just weeks before. My heart and thoughts went out to all of them. One half of my family did not celebrate Christmas at all this year due to the sudden passing of one of my great aunts. It was a great shock as she went to hospital for a cut on her leg, acquired a hospital infection and never came home. She battled against  Acute Myeloid Leukemia  for goodness knows how many years and then was taken because of a hospital infection!  I wonder how many more relatives and friends I will lose because of useless failing hospitals. After the death of my friends hubby, I really thought I may give up blogging and still might. The way I saw it was, I blog in the hope that if enough of us write and expose the failings in our health system change and reform will take place and patients lives will be protected. Sadly his death proved me wrong. As then did my aunt’s. So I have had to face facts…my blogging will not save lives or create change. So to stay or go once my site/blog is full is a question for this year.

The rest of December was ok, but not as good health wise. Had a second bout of whatever I had wrong end November and beginning to wonder if it wasn’t a bug afterall. Kept/keep  feeling nauseous between bouts too. Then out of nowhere, I had a horrendous turn. I would say probably the worst one yet. I say that because, usually despite what happens I can give a full account of what happened in what order after I have slept. This time I can only remember bits and was thoroughly confused. I woke about 5/6am. Had a spate of temporary  blindness and deafness but don’t know how long it lasted or if it happened more than once. I was drenched in sweat and remember trying to lay on a step of my stairs to cool down on the wood. I also remember getting to the bathroom as I felt I was going to lose control of my bowels and bladder, but do not remember going. My speech was so slurred when I managed to call my daughter she thought it was my son, pissed! It eventually ended, and I did the heavy sleep thing until my daughter could drop the boy’s at school and nursery and get to me. I felt really shaky and off colour for 24 hours but ok after that. Back to just usual pain and fatigue. Quite a catch aren’t I…LOL. Does this answer the question of why I am still single?. Do you want to know the biggest nightmare? Demon dog trying to jump up at me as I staggered and fell all over the place because he thought I was playing. Sadly not been out for my Christmas/New Year celebration with my daughter…delayed until I feel well enough. I really miss going for a good night out partying and it hits home all the more over the Holiday Season when all my friends are off out.

For those of you reading this and who don’t know my story, if you are wondering why I call my daughter and not an ambulance, it is because Charing Cross Hospital and Wexham and Heatherwood Trust have repeatedly failed me on many counts, as did doctors prior to that who failed to diagnose me properly. My care at virtually every stage has been abysmal and I have been treated most poorly (some would use the term bullied because I dared to seek answers about my health and complained about being failed), sometimes with an apology but often not. In particular Professor James Rikus Van Dellen and Professor Richard Wise of Charing Cross Hospital along with consultant neurologist, Michael Johnson from Wexham and Heatherwood trust have destroyed my trust in the NHS.  Shortly I will get round to writing up exactly what happened at every meeting with these guys. My story differs greatly to what these scumbag’s have written in my notes. I will also be going through each and every piece I have written and adding names. Sue me for libel? Truth is not libel and I think the last place they will want me, is in court with the proof of medical negligence prior to my SAH, proof of lies over my condition,  fiddling notes, destruction of notes/scans with the excuse they are lost, breach of patient confidentiality, failing me since my SAH and more. The governments fast campaign is an absolute joke. We the public are very aware of the symptoms of stroke and those of TIA’s but Britain’s shitty hospitals, with the worst stroke care in Europe fail us time and time again when we fall ill. Andy Burnham needs to get his head out of his arse and quit pretending to the British public that services are improving. Below is a testimonial from a stroke patient treated at my local hospital.

Nicholas Lomas was a patient at Wexham Park Hospital in Dec-2007.

 

Overall rating

 

I wouldn’t recommend it

 

The area of the hospital where I was treated was…

Doctors and nurses worked well together…

I was treated with dignity and respect by the hospital staff…

I was involved with decisions about my care…

 

What I liked

 

The ambulance crew who took me to the hospital following a stroke were extremely kind and professional. One of the male nurses in reception tried his very best to get me examined and to find me a place on the stroke ward. He even tried to physically take me to the ward only to be stopped by a female doctor who after a few hours came to examine me. She was constantly interrupted by her mobile phone. I never got to the stroke ward.

What could be improved?

 

When I was finally taken onto a general ward I suffered another, and worse, stroke. I tried in vain for a number of hours to get a doctor to attend to me but all my pleading and begging of the nurses failed to achieve this.

In my 4 days at this hospital I never got onto the stroke ward which I feel was very poor indeed.

After complaints about noise from my wife I was moved to a quiet ward which had previously been shut down. It was pretty appalling but more worrying was the fact that for 1 shift at least ALL the staff were agency and were having great difficulty nursing patients they knew nothing about. We operate 2 nursing homes and appreciate the difficulties of agency staff.

Anything else?

 

I am sad to say that the food served throughout my stay was quite appalling. It was the worst in choice, quality and presentation that I have ever had from a public body. I would be ashamed if our nursing homes ever served up such poor food. The amount regularly being thrown into black plastic sacks was testimony to this.

All in all my stay at this hospital was very distressing indeed after having suffered the trauma of a stroke. I would never willingly return to Wexham Park.

OTHER COMMENTS ABOUT WEXHAM PARK HOSPITAL

 

As you can see, it is not the best hospital for stroke patients. Many are left on general wards without proper care. Many don’t recieve scans within timescales set by NICE…despite huge investment and the building of a state of the art MRI unit. My mum and a friend who both had a SAH were left without correct and speedy treatment by this hospital in 1990…both died later in Charing Cross Hospital. Twenty years later stroke patients are still being failed. Worse than that, they are suffering further strokes in this hospital due to improper care after admission. SHAME on our government for allowing this to happen. SHAME on our government for failing to help us who have suffered because of the incompetence in our medical care. The amount of neglect in our hospitals is increasing daily and the deceit to cover it, is astonishing. 

Another thing that bothered me this month, and my family, along with many others was the horrific execution in China of Akmal Shaikh. Whilst there is a huge divide in thoughts on this case the truth remains, that a possibly innocent, mentally ill man was executed without having a fair trial. He was denied his human rights and had his life snuffed out hastily. He had been held two years, prior to death and the Chinese government were asked to delay execution until medical assessments were carried out. This was denied by the Chinese government and death ordered. It was nothing more than a barbaric crime committed by a dictatorship for a political statement. Now don’t get me wrong, I am against drug smuggling and had he been found guilty after a fair trial and medical assessments had declared him sane…my thoughts would be slightly different. However that was never going to happen as Akmal WAS mentally ill and described by some friends as simple and childlike.

To add insult to injury, Akmal’s family were then denied the courtesy of having Akmal’s body bought home. Nor were they allowed to see or cleanse his body after death (I wonder why).  Nor were they allowed to attend his burial on a desolate patch of land. Most of Akmal’s family will never be able to visit his grave to pay their respects and the only vision they will have is a newspaper cutting! That is outrageous and unforgivable not to mention disrespectful to the Muslim faith. At the very least, I hope the Shaikh family are allowed the inquest into Akmal’s death they have requested. If you would like to support them, please sign the petition below started by Dr Martin Goldring. Akmal’s family would appreciate support.

 

Petition to support the request by the family of Akmal Shaikh for a coroner’s inquest into the circumstances of his death   

 

I want to say thank you, to each and every one of you who has taken the time to read my droning here and on my website for the last year. Thanks to everyone who also took the time to message or write to me or sign petitions. Also, those who were always just at the end of an email/phone to chat and care after my SAH happened. Your support has been really appreciated and some of you have become people I really care about. I have learnt there are some very kind and sweet people out there…with a handful of sharks thrown in, to keep me on my toes. In fact, I think a thank you page is in order for real and cyber friends/acquaintances, because you have all blessed me in different ways and for that I really am eternally grateful. 2009 has definitely not ended how I expected and I wish you all a great 2010. I hope it is filled with good health, happiness and prosperity for all.

 

 

 

HAPPY NEW YEAR FROM DEMON DOG

 

 

 

 

 

NOVEMBER 2009

 

First off, before I forget or go off track elsewhere, I want to mention a really important petition. This petition is requesting the British government introduce a “legal duty of candour law” to be known as Robbie’s Law. The law, if passed would be a fitting tribute to    ROBBIE POWELL who sadly died and his parents who have campaigned for answers and justice over their son’s death for nearly 20 years! This couple really deserve medals for their devotion and stamina in pursuing the truth, after a deathbed promise to their son. The most heartbreaking thing for any parents after the loss of a child, is not to have answers and closure. They deserve this.

If you are a parent and your child died, would you not want to know there was a law in place guaranteeing that you would be told clear honest answers about the events surrounding the loss of your child? If you are a relative who has just lost a loved one, would you also not want the truth of events? If yes, then please sign the petition below.

  ROBBIE’S LAW PETITION

 

SOME FURTHER READING ON ROBBIE’S CASE

 

PROBE INTO ROBBIE’S DEATH MOVES A STEP CLOSER

 

NEW CALL FOR ENQUIRY INTO ROBBIES DEATH

 

FATAL FLAWS

 

This month certainly was more peaceful, just as I wished for but still tinged with yet more sadness. My next door neighbours 14 year old son passed away and it was a great shock for all. He was such a special little boy and our family will miss him dearly. Thank goodness everything has started to settle down now and life is slowly getting back on an even keel all round. I feel lessed stressed although a little unwell. I actually feel ashamed for moaning of my own problems (believe me there was much I didn’t share) last month with the heartache everyone else was suffering around me. However, I am only human.  Death affects me too and I spent many hours sobbing my heart out with no-one to comfort or cuddle me as I was trying to be strong for those around me. I defy anyone to learn of 7 deaths and still keep a smile on their face 24/7.

 

I have a new found admiration for nurses and doctors who are “in the job for the right reasons” because they deal with the sadness of loss day in and day out. I have never fully appreciated how hard this must be on them before, until now, so it has been a sad but good learning experience. I know now I could never do their job. Please don’t take that for me weakening, I still despise with a vengeance the lying scumbag’s involved in my care and people who are not fit to be working in the NHS or running it. But, the ones who deserve our praise should be thanked eternally. They do a marvellous job under really tough circumstances and under appalling conditions, in many cases.

 

Not too sure how many signees will see this but, I want to thank everyone who took time to sign the GROUP B STREPTOCOCCUS PETITION. There are currently enough signatures for it to be presented to the government for consideration, but more would still be good. It closes Boxing day. Please if you view and sign, could you pass to everyone you know in the UK.  Someone told me I am wasting my time and why bother when I won’t be getting pregnant so it doesn’t affect me…It is ignorant fools like this that make my blood boil! For every newborn, born into a lifetime of preventable disability from permanent neurological/brain damage does affect me and many other patients with serious neurological conditions. We wait months for appointments and scans and some die because funds and beds or specialist care are not available to treat them quick enough. For every infant that is born with this preventable infection and needing care someone, somewhere else loses out, so it actually affects each and every one of you indirectly. The NHS money pot is empty and the whole system encumbered with debt…it is far cheaper to prevent illness and protect life than cure…I rest my case. Sadly little Grace Vincent, the baby girl who made me want to raise the petition again has since died. Try telling her parents people who are trying to change the law to save others from this trauma are wasting their time. I may not do anything that creates change but I try for the good of my family and others. I am sick of people sat on their asses whingeing about our country, but who do bugger all about it. Whatever their gripe may be. If you don’t like or agree with something make an effort to try and change it. If your efforts fail, accept it gracefully knowing at least you tried.

 

In fact been a real month for learning who is who in my life right now. Some really great friends. Some friends no more. Acquaintances that have become friends. Friends that have become acquaintances. And some who were never friends or acquaintances in the first place…and I was gullible to believe otherwise…luckily only a few of these. A warning to all be very careful when forming “friendships” with people on the internet, not all are who they claim to be. The games people play never cease to amaze me!  Oh well people come, people go…such is life. Funny how things can change so quickly. The only thing that never ever changes is good ole demon dog…a nutter true to his name as always. Good to re-evaluate life every now and then though remembering just as times change, so do friends/acquaintances. Once in a while a clearout is necessary and what better time than at the end of the year.  The feeling once done can almost be likened to taking a good crap!

 

And I will end on that note, as it is not a joking matter at the moment. I really have spent the whole weekend forming a close, huggy feely relationship with my toilet. So just throwing in a quick post whilst feeling rather worse for wear still.

 

See you all when I’ve done all my Christmas preparations. I’m sooooo excited! I have promised my daughter faithfully that I will go out with her once over Christmas/New Year to celebrate and catch up with people I’ve not seen in ages. It’s a bit of a worry as the only other time since being ill we have been out like this, was for my birthday 2years ago and within an hour I was really ill and had to leave.  I hadn’t even had a drink. I was having “turns” for 7/10 days after. However it is something I am going to do and hopefully all will be ok and we’ll have fun…I am determined to have the best Christmas…no matter what!

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.  We never ask for help from anyone as a rule, preferring to cope 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 and more funding allocated 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 and neglected, the schooling system in place is a shambles 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. Not sure if harmonious or loud drums to the tune of “another government cover up”. Only time will tell. Also if they cannot even manage to keep their site copyright up to date, can they be trusted to oversee our hospitals are managed correctly. Let’s hope they  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 at night so my daughter is finally getting proper sleep for the first time in 3 years. He is receiving speech therapy and attending nursery two days a week. Oh and yes my daughter 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 NHS a 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 clearly understandable, even if I did have to tell him to say it first. 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.

UPDATE  Someone was concerned after reading this as to what was wrong with my grandson and why he was having a brainscan. He has been experiencing strange episodes where he goes vacant, sweats and his legs go rigid. Unfortunately, he has not had the MRI yet, first because he will quite probably have to be sedated and second the professor that was ordering/ordered it has left. My daughter will now have to chase this up or no doubt he will just get forgotten and buried in the chaotic NHS. Our other concern with this scan is we could find he carries the same congenital brain abnormalities as my mum and I. That could then also, make him a walking time bomb.  

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”. I have just heard whilst the author is still going ahead with the book she has had to remove her site, due to a stalker. So I have removed her details from here. This is horrendous and very sad as she has worked so hard on this project. I cannot believe someone would do such a thing!

 

I was notified mid-month I have a new editor for a site I contribute to. 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. I do try but I’m far from perfect.

 

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 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.

 

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!