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50shadesofsun

News and Opinions about MS, Health & Disability

Cruise crew couldn’t do enough

Crown Princess Lido deck

A couple of days ago, I posted a blog that was the first part of a story about a cruise aboard Crown Princess to the Norwegian Fjords thanks to a grant received from the UK’s MS Society back in 2013. It was a much-needed holiday courtesy of the society’s short breaks fund. I promised more details, so here goes.

Owing to my limited mobility, for any trip outside our state room, the fancy name for a cabin, it was necessary to use my wheelchair. Not that Lisa had to push the chair inside the main dining room where we dined every evening.

As soon as we arrived, a restaurant staff member took over and wheeled me to our table. Then once I had transferred to a restaurant seat, at my choice, the wheelchair was safely stored on one side.

Lisa and I with table mates Glen and Lyn plus waiter Allen and assistant waiter Zoran

Lisa and I with table mates Glen and Lyn plus waiter Allen and assistant waiter Zoran.

Eating presents a challenge all the time because MS affects my left side, meaning I need to use a fork in my right hand. I am unable to use a knife and fork in the usual way. Lisa is used to cutting up my meat for me, so thought nothing of beginning to do so when our main courses arrived. Instantly, our assistant waiter Zoran appeared and asked if anything was wrong. We laughed and said no, explaining what was going on. Whereupon, the young man said he would do that for me.

Thanking him, we thought no more about it until the next night. Once again, Lisa started to cut my meat when our server said “No, that is my job” and took over. After that, any solid meat was served to me pre-cut. Absolutely perfect. And, after each delicious meal, my wheelchair reappeared and I was wheeled out of the restaurant before my beloved was allowed to take over.

Our first shore excursion caused a problem in that one of my chair’s front wheels was severely damaged as we got off the ship. Still, we managed to enjoy the excursion around Lysefjord on board a boat. On returning to the ship, thanks to the help of a crew member, we sought assistance through the customer service desk. After a bit of a wait, a couple of engineers arrived and took the chair away – only to return about 20 minutes later having replaced both front wheels and apologised that the replacements were blue not black. They worked, that was all that mattered. They could have been pink for all I cared.

It was a murky day for our dog sled ride.

It was a murky day for our dog sled ride.

Another shore excursion was a dog sleigh ride, not that there was snow on the ground as it was July. Instead, these ‘sleds’ were on wheels but we got the idea. We got our first views of reindeer and also passed a warning sign about polar bears.

On board Crown Princess there was plenty to do with a variety of activities and venues to enjoy with the help of various members of the entertainment team. One of the most notable was ‘CJ the DJ’, really Chris Walker a likeable Aussie larger than life guy. Entertainment was in his blood and still is, although he left Princess last year when he married. (And Chris, if you are reading this, have a great birthday tomorrow.)

CJ interviews me after I sang in the karaoke final.

CJ interviews me after I sang in the karaoke final.

It was CJ’s never-say-die attitude that came to our rescue at North Cape, the most northern point on the European mainland. Somehow, one of my wheelchair’s solid tyres came off. I was helped indoors while Lisa and another passenger tried to force the tyre back on. Then CJ appeared, realised that he needed some sort of lever. Not being able to find one, he borrowed a knife from the café, fixed the tyre back onto the wheel and returned the knife to the tray from which he borrowed it.

Overall, a fantastic cruise and a superb holiday that whetted my appetite for further cruises.

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Referendum blues …

 

Remain: David Cameron versus Leave: Iain Duncan Smith

Remain: David Cameron versus Leave: Iain Duncan Smith

Prime Minister David Cameron has been warned to stop making blue-on-blue attacks on Conservatives who want the UK to leave the European Union, or face the possibility of a leadership challenge. Well, if the Leave campaign wins the referendum on June 24, his position will be untenable anyway – after all, he was the one who promised the referendum in the first place.

  • With Iain Duncan Smith, the Secretary of State for Works and Pensions, being so hated by disabled benefits claimants, is it wise for him to so publicly back either side? It seems to me that his open support for the Leave vote could prompt a massive Remain vote from those opposed to his welfare cuts. After all, they might be worried about how much worse things could get outside Europe.
  • A miscalculation? The Conservatives have announced plans to give British citizens ‘votes for life’, wherever in the world they choose to live; instead of just for the 15 years allowed now. There are millions of British Expats living in Europe, many without a vote under the current rules, who would almost all vote to Remain. Why then, did Cameron not make sure they got their ‘votes for life’ before the referendum? He lost a lot of votes by not doing so.

Just a few random thoughts!

 

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Do charities really want to find cures?

logo mndalogo bhflogo alzheimers

logo crukms logo

logo parkinsonlogo kiidney

It really is a conundrum. Charities that support research into finding cures and treatments for particular diseases all seem to say that they want to end that illness, to beat it – finally. But, the question is, do they really?

Recently, some voices have been raised against certain of these charities for ignoring potential cures and continuing to be involved in research into new drug treatments; which means new sales and profits for pharmaceutical companies. Likewise, drug companies sell medicines. They get more money from treating illnesses than curing them.

It is hardly surprising that charities are seen as reluctant to find real cures that will put them out of business. You just need to look at the salaries paid to their chief executives.

Of course, similar comparisons can be done across research charities in various countries around the world but that would generate much more data that would, to my mind, make this post less attractive to read. Therefore, I chose just one country and, being British, that one is the UK.

As I have multiple sclerosis, let’s start with the MS Society in the UK. That, according to the last available annual accounts, ending December 31 2014, has seven employees whose salaries are in excess of £60,000 a year. Two of these are between £90,000 and £100,000 of which one, presumably, is chief executive Michelle Mitchell.

Other notable UK charities who are battling illnesses for which research is still needed include Cancer Research UK, British Heart Foundation, Kidney Research UK, Pancreatic Cancer Research Fund, Alzheimer’s research UK, Parkinson’s UK and the Motor Neurone Disease Association. There are, of course, many more; this is just an indicative sample.

The chief executives of these charities are paid these salaries, as itemised in their most recently available annual accounts: Cancer Research UK – up to £250,000; British Heart Foundation – £165,000; Parkinson’s UK – up to £120,000; Kidney Research UK – up to £110,000; Alzheimer’s Research UK – up to £100,000; Motor Neurone Disease Association – up to £99,999; and Pancreatic Cancer Research Fund – in excess of £60,000. Note: All ‘up to’ figures should be read as in a £10,000 up to the figure quoted.

Looking at those, mainly, six-figure salaries and you can see that the vocal protesters may have a point or two. It is all very well for a particular charity to be involved with discovering or testing new drugs. That means they can continue in the business of raising money and carry on paying themselves huge salaries.

Now, I am not suggesting that these salaries are not earned, far from it. If they want the best person for the job, they have to pay competitive salaries. But, in doing so, they have to be transparent in their dealings and be genuinely open to new therapies that could cure the particular disease they say that they are committed to defeating.

Nothing would please me more than seeing charities being wound up because cures had been found. What do you think?

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A ‘short break’ cruise to Norway thanks to MS Society

Lisa and I, pictured during our cruise on Crown Princess.

Lisa and I, pictured during our cruise on Crown Princess.

It seems a long time ago now but in spring of 2013 I had not had a holiday for a number of years and, living on disability benefits, we could not afford much – so our regional MS Society staff member recommended that I apply to the society for a grant from its short breaks scheme. Our application was supported by my MS Nurse and within 10 days the grant was agreed.

Lisa wanted to introduce me to cruising and so we booked a two-week holiday aboard Crown Princess. The cruise included the Norwegian Fjords, the Arctic Circle and North Cape – the most northern point on mainland Europe.

It provided the break I desperately needed, a break also for Lisa, my wife and carer, who still pushed my wheelchair but was happy not to cook, clean etc for the two weeks.

On return to the UK, where we then lived, Lisa wrote the following about some of what we had enjoyed:

Visiting the Norwegian Fjords

There are few things more majestic than a scenic ride into the Norwegian Fjords by boat. First, you pass through little villages, then as the fjords begin to tower above you on either side you see the splendour of what you are there for. This spectacle rises so dramatically out of the water and walls you in with their beauty.

As you pass further into these giant natural formations, you come upon water falls flowing into the water and creating pools of foam. Still further into the fjord as the walls at your sides become closer you will not feel that they are closing in on you. You will be in awe with nature. In these waters, you may encounter seals along with goats on the shore. No matter how bad the weather, you feel like you are a part of nature for this portion of your life.

First-of-many-fallsPictured, left, is Lysefjord! On a cliff six hundred metres above you there are hundreds of people looking down on you. Some will climb up this rock named Preikestolen or Pulpit Rock as it is called. As you go further along, there is another formation which appears to be a boulder in between two cliffs. This boulder, named Kjeragbolten – Kjerag for short, rises one thousand metres above the water. There are many adventurers who jump onto this boulder between cliffs. An adventure not to be missed.

Another not to be missed sight is Geirangerfjord (pictured below). There are two very important ways to see this fjord. First is by boat or ship, second is a tour up the eagle road with its eleven hairpin turns. Try to do both if you have time. Coming along the fjord, as the water narrows, you will pass quaint villages and little hamlets with many brick red homes. You will wonder why you don’t live in one of these homes with so much inside-geirangerfjordbeauty surrounding you.

You will pass by several waterfalls, one being known as ‘the bridal veil’ and one of the other important ones of note is ‘seven sisters’. Both of these falls are quite picture worthy. As a matter of fact, this fjord is so picturesque that it is now a Unesco world heritage site. If you are more into the adventurous feeling this fjord can give you, then make sure you kayak on Geirangerfjord.

After you come back out of Geiranger and its beauty, make sure you hop on a bus going up the eagle road. There are many photo spots of the fjord below as you climb by coach.

  • There is much more to tell about this trip, such as an on-board repair to a damaged wheelchair, a dog sleigh journey, reindeer, a week without the sun setting and marvellous attention from staff in restaurants and bars as well as the entertainment team. Watch for another instalment.
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Remembering life before MS diagnosis

hospital bangor hospital walton                        Gwynedd Hospital, Bangor, and the Walton Centre, Liverpool.

Just the other day, someone asked me what my life was like before I had MS – to which I replied that I had the illness some 25+ years before it was diagnosed in the spring of 2002. I asked her what she wanted to know and she said all of it.

Here’s what I told her:

I was diagnosed with grand mal epilepsy in 1972 after suffering my first seizure in the newspaper office where I worked as a reporter. No trouble knowing what it was as my brother, 11 years older than me, had had it for many years. He was more susceptible, though, and had many seizures until one that led to his death at the age of 48. On the other hand, medication has mine completely under control and free of seizures since 1976.

In 1974 I contracted glandular fever, a horrible and painful encounter that I would never want to experience again. Apart from those, and the usual childhood illnesses of measles, chicken pox and mumps, I was generally fit. I played hockey (field) for a club team on Saturday afternoons, refereed football (soccer) matches on Sunday mornings and, in the summer played for a cricket club on Sunday afternoons.

My first symptoms, at least those that were obvious to me, that something was not quite right were in 1983.  At the time I lived in London and, one cold Sunday morning in January, I was standing outside a market when I noticed that my right foot was cold as it should be – but that my left could not feel the cold. I also noticed some ‘pins and needles’ in my left arm and leg.

As one of the company benefits was private healthcare, I consulted the company doctor who arranged some consultations for me in London’s Harley Street, renowned for its concentration of private doctors.

After a couple of consultations and a lumbar puncture (spinal tap) that proved negative, I was advised not to cross my legs or lean on my elbows. I still don’t.

logo scoutlogo clear st john copyLife went on. I spent 10+ years as a volunteer leader in the Scouts followed by another 10 as a volunteer with St John Ambulance.

My left leg began playing up in around 2000 and in early 2002 I also realised my left leg could not be lifted as far as my right. I went to my GP who referred me to our local hospital at Bangor, North Wales, and soon was in the care of a consultant neurologist. Lots of questions and answers, a visit to the Walton Centre specialist neurology unit in Liverpool and, finally, an MRI scan.

You can read about the next stage in a permanent page on my website: D-Day: MS diagnosed http://50shadesofsun.com/?page_id=466

 

 

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Everyone’s vote should matter – but does it?

ballot box

Uncertainty is hanging over the heads of people in so many different countries this year as questions relating to their futures are being decided at the ballot box. Well, they should be.

In the USA, the various Democratic and Republican candidates are fighting through the primary and caucus system to win enough support to win their party’s nomination as candidate in the presidential election in November.

In Europe, there are three important decisions being made: the Irish general election; the UK referendum on whether to remain in or to leave the European Union; and the efforts In Spain to form a government following the December general election that left no party with enough seats to govern alone.

flag USA

Back in the States, there are really only two contenders for the Democrats: Hillary Clinton and Bernie Sanders. Hillary is by far the favourite although her early victories have been close – some decided by the toss of a coin and others through the help of unregistered voters. It seems that not all is as it should be in the States. My wife, Lisa, is American and she is not surprised by the shenanigans. “Votes don’t matter in America. People don’t really choose candidates or the President. Look at the New Hampshire primary; Sanders won 60% of the popular vote but, because of party rules, Clinton won the most delegates; tell me how that is fair or democratic,” she says.

On the other side of the political debate, the Republican fight seems to be only of concern now to three would-be presidents: front runner Donald Trump, Ted Cruz and Marco Rubio. Others still in the race seem to be out of contention. As the campaign heads towards ‘Super Tuesday’, it looks as though Trump may soon be in an unbeatable position to be named as the party candidate.

flag Ireland

Ireland goes to the polls tomorrow, February 26, to elect its new government. Opinion polls point to Fianna Fail replacing Labour as the second largest party. Fine Gael looks set to remain the largest party, just, but with fewer seats No-one is predicted to achieve an overall majority.

flag Spain

Spain’s parliament meets on March 2 in an attempt to install PSOE (socialist) leader Pedro Sanchez as prime minister. To do so, he will need to win the support of the majority of deputies choosing to vote. Some may abstain. If the PSOE leader cannot receive the necessary backing the PP (conservatives) may be asked once more to form a government but  they have already declined once. Should all attempts fail, Spain will go to the polls once more in June.

flag UK flag Europe

The UK faces a vote in the form of a referendum to either remain in the European Union or to leave it, the so-called Brexit. The vote takes place on June 23 and the ‘Remain’ and ‘Leave’ campaigns both have support from politicians in all the main UK-wide parties. This referendum is too distant and the campaign too long to hazard a prediction yet.

 

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Can baby talcum powder cause cancer?

powder 2 powder 1a

Campaigners for natural products and natural ingredients are uplifted, albeit maybe only temporarily, as an American court awarded $72 million in compensation to the family of a woman who died of ovarian cancer last year.

I say ‘albeit maybe only temporarily’, as I fully expect the company involved, Johnson and Johnson, to launch an appeal.

The case in Missouri centred on Alabama woman Jacqueline Fox, 62, who died due to ovarian cancer. Her family argued that the disease was linked to the use of baby talcum powder made by New Jersey-based company. Ms Fox had used the product for decades, the court was told.

The jury’s verdict came late Monday at the end of the three-week trial. The jury supported the view of Jacqueline Fox’s family, which argued that the cosmetics giant was “lying to the public” and “lying to the regulatory agencies” about product safety, said lawyer Jere Beasley.

The jury found the company guilty of fraud, negligence and conspiracy – and awarded $10 million in damages plus $62 million in punitive damages.

Her family argued that the leading multinational company knew of talc risks and failed to warn users.

This is the first time damages have been awarded by a US jury over talcum powder claims.

Researchers are divided on the link between ovarian cancer and talcum powder. The International Agency for Research on Cancer classifies talc used on the genitals as “possibly carcinogenic” because mineral talc in its natural form does contain cancer-causing asbestos. However as asbestos-free talc has been used in baby powder and other cosmetics since the 1970s.

Charity Ovacome says there is no definitive evidence and that the worst-case scenario is that using talc increases the risk of cancer by a third.

In the past, Johnson and Johnson has been targeted by consumer health groups, objecting to some of the ingredients used in its products. In 2012, yielding to consumer groups’ pressure, the company pledged to eliminate two contentious ingredients 1,4-dioxane and formaldehyde, from all products by 2015.

In this case, Johnson and Johnson had denied the family’s claim.

A spokeswoman said: “We have no higher responsibility than the health and safety of consumers, and we are disappointed with the outcome of the trial. We sympathise with the plaintiff’s family but firmly believe the safety of cosmetic talc is supported by decades of scientific evidence.”

She added that the company is considering its next legal options, such as an appeal.

 

 

 

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Nothing literal about seeing eye-to-eye

Captain Claus Andersen with me on board Anthem of the Seas while crossing the Atlantic last year.

Captain Claus Andersen with me on board Anthem of the Seas while crossing the Atlantic last year.

Amazed, bewildered and downright exasperated. Those are the feelings that dominate my thoughts as they prompt me to speak out through this blog. As regular readers know, I have severe mobility problems due to multiple sclerosis but this is about anyone who has to rely on a wheelchair.

Now, everyone who has a physical disability knows they can expect that some people they meet will speak to their attendant or carer rather than them. Some people do have that unfortunate tendency to not look down to the person in the wheelchair but, instead, talk to the standing assistant.

I have no idea how other people in my position choose to handle that but in my case it is quite easy. As my carer is also my wife, Lisa, we work as a team. If she asks a question, I expect her to receive the answer- no problem. But if the enquiry is made by me, the answer needs to be directed to me. To be fair, in my experience, this is how most people do react.

However, if someone does try to answer my question by directing his or her reply to Lisa, we let that person finish before I answer – probably adding that it would be polite if, in future, he or she could look at the person who had made the enquiry.

The feelings mentioned at the beginning of this post don’t come, however, from a person in a wheelchair thinking he is being not treated properly. Instead they come from my reaction to another person’s over sensitive view of a picture. Let me explain.

The other day I posted a blog (to read it, click this link http://50shadesofsun.com/?p=1554) about being aboard Royal Caribbean’s Anthem of the Seas on its transatlantic voyage last October and November, and paid tribute to the captain, Claus Andersen, for his coolness in command during the storms we encountered.

Lisa and I happened to meet the captain one day and I took the opportunity to ask if he would pose for a picture with me. He readily agreed, suggested a location and wheeled me there himself. He then called over a crew member to take the picture with my camera.

There was NO problem. I was not ignored in any way. We had a good conversation.

BUT someone seeing the picture – the one above – said the captain had not learned how to treat people in wheelchairs. He maintained that the captain should have crouched down to bring our heads to the same level.

What utter balderdash. Do you see tall people crouch to the height of a shorter person? Of course not!

If anybody did that to me, I’d feel demeaned and patronised. Yes, I am in a wheelchair but, where possible, treat me as you would any other person; treat me as an equal. I might need a wheelchair space or to use a ramp but please don’t be condescending by crouching to my level.

The expression ‘seeing eye-to-eye’ does not mean literally.

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Madeleine McCann mystery story changes and smears

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Kate and Gerry McCann seen leaving church on Madeleine’s 4th birthday. No balloons, no smiles in this picture.

 

Before being hospitalised last week, I made a promise to various people to look into what they say is false ‘evidence’ against Gerry and Kate McCann, parents of Madeleine who disappeared nearly nine years ago from the family’s holiday apartment in Portugal.

Little did I realise at the time that I would be rushed to hospital and that my promise would be delayed until after Katie Hopkins column, in the UK’s Daily Mail, headed We’ll never know what really happened to Maddy

The promise I made followed my blog post on February 16 entitled Madeleine McCann mystery – we may never know truth (similar heading, huh?) For some reason that I still don’t fully understand, my independent and unbiased post was seen by some pro-McCann people as being ‘anti’ and one person even said I had my own agenda.

I was criticised for spreading misinformation – which I didn’t. But don’t take my word for it; read the original blog post by following this link http://50shadesofsun.com/?p=1601 and then, please, come back here.

Ok, points to clear up first: My working life has been as a journalist. I always make it clear when expressing my opinion as opposed to just reporting a story. In my original post I did not indicate support for or condemnation of Madeleine’s parents – except that they had to take part of the blame for leaving the three children unsupervised and unprotected while at dinner in a nearby tapas bar. On this point, which is my opinion, I don’t actually see much disagreement from even the most ‘pro’ of the pro-parent side of the McCann debate.

Another of my opinions concerns tampering with records of what happened to make something else appear true. This is about the same as giving different accounts of events when asked at different times; otherwise known as changing your story.

The two pictures I used in the last post, of the parents leaving church on Madeleine’s 4th birthday, showed them smiling but at that time I knew nothing of the video. Having now watched it, I can tell you that someone went to the trouble of isolating the smiles, caused by an incident with birthday balloons, to completely misrepresent the situation. The parents were not smiling the entire time, just briefly because of the balloons. Other pictures from the same video would tell a completely different story.

FAKE - Kate and Gerry's heads have been added to another picture.

FAKE – Kate and Gerry’s heads have been added to another picture.

REAL - The original picture used to produce the fake.

REAL – The original picture used to produce the fake.

Similarly, there is a picture purporting to show Kate and Gerry counting money. Apart from this being highly unlikely in the circumstances, to me it at first appeared unimportant. But then another picture appeared. In every detail the pictures are identical complete with the same bodies and hands but, this time, with different heads.

There can be no doubt that trickery has been used here to create an image that never took place.

Hmm, trickery by the anti-parents campaigners? Looks like the pro-parent ones may be right. Or does it?

This is where so many questions need to be asked.

Police asked how did they leave their apartment to go to dinner? Both said: Through the front, which they locked. Later, both changed to through the patio door, left unlocked as it did not lock from outside. The front door may not have been locked either, they admitted.

Initial reports of the ‘abduction’ were about the window’s shutters being ‘jemmied open’ but there was no evidence of that. Statements about the window being opened by the abductor for escape with the child were nonsense as two easier routes were available – ie both unlocked doors.

I am not attempting to reach a conclusion here, except to say that that there is far too much to uncover, so much to delve through that I doubt the true facts about that night will ever be known. After nearly nine years, I believe the trail has gone cold.

OPINION

On the one point on which I am positive, charges should be brought against both Kate and Gerry McCann for child neglect because even a half-hourly check-up does not mean that the kids were not left alone. Further, for leaving doors unlocked, I would add charges of placing children in danger.

They may not be complicit in crimes of abduction or murder but they are certainly guilty of being irresponsible parents.

And if it can be proved who faked the pictures, I’d charge them too.

 

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Lack of anti-clotting checks, not MS, put blogger in hospital

inmaculada

Sorry that I have not blogged since writing last week about taking the rough with the smooth in terms of living with MS but, well, things weren’t all that they seemed. It turns out that my bout of sickness had nothing to do with multiple sclerosis. It reminds us to not blame all setbacks on or invisible ‘guest’; we can get ill from other things too.

In my case, it was all about a medication that I take for a cardiac condition and that I have taken for some time. In the UK it is known as Warfarin and here in Spain as Sintrom; it is an anticoagulation therapy for anyone in potential danger of a clot causing a stroke.

Well, I am one such person because at some time in my past I had what is classed as a ‘silent’ heart attack, one that I had no idea about, but that left behind a tell-tale scar in one chamber of my heart.  That was discovered through tests conducted after my atrial fibrillation (irregular heartbeat) was diagnosed some years ago.

Taking an anticoagulant medication requires continual monitoring to check on your INR level. In the UK this was done every four weeks or so and action taken to correct any wavers but since that time, numerous factors, including moving to Spain, got in the way.

In short, the INR of a person not on anticoagulation therapy is one; mine was supposed to be two to three, meaning my blood takes longer to clot.

But, last week, when taken to our local hospital in Huercal-Overa in the south of Spain, my INR level was a staggering 19.95. My urine contained blood, although it looked like blood pure and simple, and my body bore numerous bruises caused by nothing more than light touches. In fact, it still bears them now.

I am indebted to, and grateful for the assistance of, every member of Hospital La lnmaculada’s emergency department (Urgencias in Spanish). They are a really great and professional team. From telling them my symptoms and medical history, they had run tests, diagnosed the problem and had it under control in less than six hours although further tests, including a CT scan, led to my hospital stay extending into its third day.

I am home again now, although temporarily physically weaker than usual and very much in recovery mode. Even this post took much more time and much greater effort to write than usual.

50shadesofsun.com will be back on track very soon but please accept my apologies for any drop in frequency; I assure you that the quality and journalistic integrity will remain intact.

Finally, thanks are due to everyone for the kind messages of goodwill I have received in the last few days, for help from our neighbour Barry, and for the never-ending love, compassion and care provided by my beloved wife Lisa.

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