"All our dreams can come true, if we have the courage to pursue them"
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.
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
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
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
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
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
It meant that the NHS’s lack of action on his brain bleed wasn’t the cause of his
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
That Steve went quickly, that the cancer wasn’t long and drawn out meaning he would
have been in real pain for months, it was a blessing in disguise that its shocking
speed that robbed us of him is what occurred.
That Steve didn’t know about the cancer as it was the one disease he would have faced
badly, even head on.
That he is now at peace, well as much as someone like Steve ever can be, he got on
with life at a fast pace, so he’ll surely be taking the same attitude to whatever
comes after it.
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.