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MY AUTOBIOGRAPHY OF MS

The dates on the links below are when the updates to my autobiography / health diary were completed. The updates usually cover the time period since the previous one. There is overlap in what I wrote, as the health diary updates were originally written for a different site than this one. There are some specific topics which are named rather than dated, and these have been put in approximately when I was doing them / they occurred.

1996 - 2000

March 2001

September  2002

Florida

My life to 2002

April 2003

June 2004 H

July 2004 H

January 2005 H

February 2005 H

September 2005 H

September / October 05 H

November 2005 H

March 2006 H

June 2006 H

September 2006 H

April 2007 H

September 2007 H

May 2008

July 2009

September 2011

September 2012

June 2013

December 2013

May 2014

Unpublished articles

January 2015

June 2015

January 2016

March 2016

August 2016

February 2017

July 2017

December 2017

August 2018

April 2019

November 2019

March 2020

November 2020

Updates List

Steve Wright

My Husband, My Sweetheart

&

My Love.

This is an update I never ever wanted to have to write, one that covers the heartbreak of the passing of my husband and sweetheart, Steve.


It is still really hard to believe that Steve passed away on the 11th August 2020 aged just 64. I have only just accepted that he has gone and is not just on one of his long holidays abroad.


It was not something that was expected, it almost came like a bolt from the blue. I say almost because myself, Marcus and my carers, knew that Steve wasn’t at all well in the last month of his life, the pain he was in, during this time as his health deteriorated was like a rumble of thunder before the lighting bolt.


We may have heard the thunder rumbling, but the actuality of Steve’s passing was absolutely devastating, it was if the world have been wrenched from under me, I just wanted to scream and scream, “No, No, Its Not True”.



Stephen Marcus Wright

27th June 1956 to 11th August 2020

So why did Steve pass on?


We found out at the very end of September that it was due to Non Hodgkin Lymphoma, cancer of the white blood cells. This is something that was not diagnosed whilst he was alive, it did however explain a lot of what Steve experienced and what we saw during July and August.


The explanation made things a little easier, but I still wanted to scream and scream, now all I want is for Steve to Rest in Peace. Actually knowing Steve he’s probably not resting in peace but telling God exactly what mistakes he’s made and how he can rectify them and not accepting any of the arguments God is putting forward as his reasons for what he did, or what he plans to do. That’d be MY STEVE to a T.


As you will have gathered already Steve’s death was unexpected to us and the medical profession. You may also realise this from the fact that no inkling of him being in poor health was given in my last update in March. So what happened? As far as we can tell, something like this.


We know that Steve probably had the Non Hodgkin Lymphoma that killed him for most of 2020, if not before that. We don’t know exactly when it started but from his general health we believe that it came on aggressively. We think this because he went away on holiday, completely oblivious and unconcerned, in February and was talking about getting away again in late March, early April before the world took a turn for the weirder.  


The first signs that something wasn’t quite right came after April, its difficult to pin down exactly when. Was I concerned for Steve, yes, but more because I knew that he’d hit his head hard on one of his Classic American cars, when tinkering around with them. It naturally had, had to be the Plymouth Fury he hit his head on, as that car is ‘Christine’ of horror movie fame. I’d wanted him to get it checked out properly, but he hadn’t as he had other priorities, like scooter customers and eBay bids, on his mind. At the time he was starting to turn our front room into his man cave.



Would it have made a difference if Steve had visited A&E after hitting his head, we will never know. It may not have made a difference to whether Steve died or not as the cancer seems to have been very aggressive, but it may have meant his being diagnosed before he passed.


For me Steve passing without knowing about the cancer, if he was going to pass anyway, is better than him having known, as cancer was one of the few things that truly frightened Steve.


A difference it would have made would have been that we probably would have known that Steve had had a bleed on the brain from banging his head on the car, rather than having this confirmed two days before he died. He probably would have at least been seeing the Neurologists about that, rather than been waiting for an appointment.


The bleed on the brain, even though it sounds very serious, didn’t kill him, the coroner said that it was too thin a bleed to have impacted on his death. We were also told that the bleed probably happened in the first place due to the Non Hodgkin Lymphoma as this makes you more susceptible to bleeds. This is what makes it likely that Steve had the blood cancer before March / April time, when he bumped his head.

As it was, he didn’t go to A&E so he, and we, didn’t know.


Around June time, Steve started to have weird symptoms, including a numb mouth and not being able to taste properly, not being able to lift his arms up high and shooting nerve pains, a bit like a trapped nerve I’d guess. This is when Steve was contacting the doctors about getting a diagnosis sorted, he was pushing to get a scan because he suspected a complication following his head bang. Lets just say that the process of getting something done was slow. Slowed by the NHS prioritising one thing over all others, quite possibly.


It was in the last fortnight that things really got on top of Steve, he was on heavy duty pain killers, lost sight in one eye, and was continuing to lose weight and strength substantially. It was during this time at the end of July and the beginning of August that I really started to get worried because Steve was so ill he went to A&E three times by ambulance, I think, and took himself up there another time in a taxi.


Unfortunately it wasn’t until the fourth visit, in the early hours of Sunday August 9th that he got the quick head scan he wanted. It was this that showed that he had, had a bleed on the brain which was dissipating. It was a relief to know this, it gave a bit of light at the end of the tunnel, especially after he had been unable to undergo a full MRI scan earlier in the week due to claustrophobic worry.


He was told he’d had a major bleed on the brain, but within hours was being told he could go home as the Neurologist has said it wasn’t that major and he could be seen soon as an outpatient about it, this appointment did actually come through quite quickly for the 23rd August. Steve found this turn of events both humourous and bizarre, laughing and complaining about it in turn.


Sunday 9th August was actually the day Steve was meant to be delivering mobility scooters to London and Cambridge, so whilst in hospital talking to the nurses and consultants he was rearranging the deliveries, for my brother to do, the next day. My Steve, the Scooter Man, right to the end. He was organising more things through the day on Monday 10th August, so my brother didn’t get back to Sheffield until nearly 8pm. My mum was a star that day, coping being with us so late, thank you to Marcus and my carers for helping her too.


We knew that Steve was very unwell, though not why, because Marcus was having to fetch and carry things, make food for his dad, because Steve didn’t have the energy or willpower to do it himself, so very unlike him. Marcus was a real star for his dad all through his illness but especially in those last 2 weeks, doing what I couldn’t do, due to my disability. I really wanted to be able to help my Steve more, but couldn’t but Marcus, my star, stepped into the breach so well.

The tragic day was Tuesday 11th August 2020.


Steve threw up all over his bedroom at around 7am, after this both he and Marcus decided to call for another ambulance again, so off Steve went back up to A&E again and Marcus arranged for my brother to come down to our house, and delegated the cleaning of Steve’s room to him, before going back to bed.


That morning we carried on, not quite as normal, but not really expecting the worst. Unbeknownst to us though, as Steve was being transferred to an A&E stretcher from the ambulance stretcher his heart stopped, this would have been around 7.30am or shortly after.


The doctors and nurses tried hard to bring him back but had to give up eventually, his death was called at 8.28am.


We didn’t know for approximately another 3 hours because they first rang the house phone which we didn’t answer as it was really Steve’s business line and then rang a mobile of Steve’s, leaving a message for Marcus, fortunately they didn’t ring Marcus direct as they hadn’t realised that Marcus was not an yet an adult. Around 11.30am on of the Doctors at A&E managed to get hold of my brother on his mobile and he knew straight away it was going to be the worst news, but there was no way he could prepare me in any way for this the worst news of my life. He tried to intimate that it was very bad news, but when the doctor told me I screamed from the shock and horror of it. T, my carer, who was with me couldn’t believe what he was hearing either. I just cried and left it to my brother to talk to the doctor.


The doctor said that the death was being treated as unexpected and so their would be a full post mortem as to why Steve died. He mentioned there being high levels of potassium in his system, which is likely what caused his heart to stop, as well as high levels of sugar in Steve’s system but that the ‘why’ wasn’t known, hence the post mortem.

Tuesday 11th August 2020 was a day of shock, disbelief and horror for everyone, nobody was expecting the news that Steve had passed on, when my brother rang them, he said he could hear some people physically, not just emotionally, wobble when he told them.


I think the person who took it most calmly was Marcus, and that was because he’d seen how ill his dad had been, because of how much he’d had to help his dad, how much his dad had not been himself. It didn’t mean he wasn’t affected, he was, but he was expecting the possibility of the worst more than anyone else I now believe.


I now want to thank everyone for their support then and since, it truly has been invaluable for me. I really don’t know how I’ve made it this far through the grieving process it has been so hard losing my Steve, but I guess I have moved through it slowly, and continue to do so, without realising that I am doing so.


There have been a number of key moments along the way however the first being at the end of September when we found out why Steve passed, this is when the Non Hodgkin Lymphoma was first mentioned. We hadn’t thought of cancer of the white blood cells at all before this. Maybe Steve’s weight loss and pain at the end had meant cancer had fleetingly crossed our minds, but not really and definitely not that particular cancer. We’d more been down the path of believing it was linked to Steve’s brain bleed and the lack of action on that; this had made me very angry at the NHS for turning him away from A&E again and again, rather than helping him and keeping him alive.


Weirdly the Non Hodgkin Lymphoma verdict was a relief, yes that does sound weird saying it was a relief to find out that my husband died of cancer, but in the circumstances it happened it’s actually true. It’s true because


  1. It meant that the NHS’s lack of action on his brain bleed wasn’t the cause of his death.
  2. That he died of a cancer that is hard to diagnose, which meant his death was more natural and less preventable, which is comforting in its own small way.


That doesn’t mean I don’t sometimes think they could and should have picked it up, but in reality I can’t say they should have.


The other things about the diagnosis, and the way Steve passed, that have helped me, are


The second was the funeral, which happened on the 6th October 2020. At the time it didn’t seem like an important step in grief it just seemed awful.


Worst of all was when the hearse turned up with Steve’s coffin in it, NO, NO, NO, much, much too real to take, take the hearse and coffin away. Once the coffin moved into the South Chapel at Grenoside Crematorium, it  was slightly easier and I was able to recompose myself for the actual funeral service which summed up my Steve really well. As well as you can sum up such a complex man in so short a time.


How do you sum up someone with such a zest for life, such self belief, such humour, such loyalty and such love? We did our best to do MY STEVE, the intelligent complex man who covered himself in the guise of a much simpler man, justice. Thank you to my brother and to Stephen Singleton for speaking so well at the funeral. It was good that my poem about Steve could be read out, it meant my thoughts about my loving husband, were really part of our remembering Steve.

Yes, Steve was a total nutter at times, but he was MY total nutter!


It has only been this month,in the last few weeks that I have accepted that he is truly gone and not just away on one of his long holidays.


The house is so different without him, there is much less laughter and swearing, its more subdued without Steve here.


At some time in the future we’ll create a page dedicated to the things people said about Steve, I think its likely to be early next year rather than this year.

Since March there have been other things occurring, not related to Steve, but they really aren’t important, not even my health.


You, may say; whoa there Sylvie, but it’s how I feel.


Actually my health has been fine, touch wood, the only major hurdle I’ve had to deal with my Baclofen pump stopping working when the battery ran out, on schedule, after 7 years. This happened in July and caused me to go into Baclofen withdrawal, sending my body out of whack, yes more so than normal!


After the pump stopped my limbs started spasming hugely as well, which is also painful. The reintroduction of Baclofen orally, firstly brought my body into relative whack and then as it was increased reduced the level and pain of the spasms. I am now on the maximum dosage of Oral Baclofen, so we are introducing Tizanidine into the mix to reduce them further.


I’ve been up to the hospital a few times since March, but some appointments have been transferred to telephone calls instead, that seems to work ok for me at present but I’m not sure it is the right call all the time. Some other appointments remain permanently suspended or just haven’t happened.


Speaking of appointments, I had a new carer start in August, Natalie, she’d just started working for me before tragedy struck, so she met Steve, for this, she and I are grateful as it meant she had a small idea of what I’d lost when Steve passed.

What else needs mentioning, well my book, I will add the poem about Steve to it and add a dedication to Steve to it, but now is the time to draw a line, and add no more. New poems etc can be added to another book; I was trying to do a poem about my everyday life but it hasn’t come together, so I will write something at the front of the book to give my life more context for those who read it but don’t really know me. The plan is to have it ready in the early new year for someone to edit ready for self publishing later in the year.


I don’t know how many words into this update I am, it’s a lot, and I haven’t mentioned directly the thing 2020 will be remembered for Covid. What difference has it made for me? Well I’ve only been past the end of the drive for hospital appointments and Steve’s funeral so my life has been a lot more restricted, which is something I can cope with but don’t like. We are doing what we can to prevent it coming in the house, by being as sensible, cleaning, social distancing and others, not me, wearing masks in other words being as careful as possible; so far so good.


That’s enough on that boring subject so to conclude. I just want to say my final goodbye to Steve because after all he did like a good buy at Tesco and on E-bay. I just thank him for everything he did for me for nearly 22 years, stuck by me through thick and thin. I know I caused a lot of problems, but he saw me climb back from 5 Stone 10 lbs to 8 and a half Stone again, with the help of my brother and carers.


The way he did all that was just amazing and I just want to thank you Steve, like I always said to you, life is not measured by the number of breaths you take but by the number of moments that take your breath away and you gave me so many of them with all the travelling, the places we went, and the things we saw. Then you had my room built so I could live at home again and that, even though I didn’t want it at the time, to me it is now invaluable.


I love you Steve and I just wanted to say my final thanks Steve; nobody can believe you are gone but even though after you went blind in one eye, I realised anything was possible including you dying, no one can believe it. Thank you anyway. I know your probably never going to hear this but I am going to let people know how grateful I am, tata Sweetheart.


Love you always

Sylvie


Feel free to e-mail me

Mail: brown.websites@gmail.com?subject=Crash A22

Sylvie Wright

November 2020

1996 - 2000

March 2001

September  2002

Florida

My life to 2002

April 2003

June 2004 H

July 2004 H

January 2005 H

February 2005 H

September 2005 H

September / October 05 H

November 2005 H

March 2006 H

June 2006 H

September 2006 H

April 2007 H

September 2007 H

May 2008

July 2009

September 2011

September 2012

June 2013

December 2013

May 2014

Unpublished articles

January 2015

June 2015

January 2016

March 2016

August 2016

February 2017

July 2017

December 2017

August 2018

April 2019

November 2019

March 2020

November 2020

Updates List