My memoirs of the year my world would change forever……
This is the hardest piece I have to write to date …..but what I have learnt from this life experience is priceless …and the life lesson just keeps giving as circumstances ,emotions and the gentle layering of life and the ever rotating universe moulds and shapes me…..please bare with me as I paint the picture and let you into my world as its a lengthily read ….but i felt it was the right time to share …..
It seems that the 10th march will be a date for immense changes in my life …As an adult it was my admittance to hospital with lesions on my brain and a diagnosis of MS and as a child my mums passing .over the same 24 hours ….
Anyway back to 1984 ……
I was delivered the most devastating news any young child could ever hear on a bright and breezy Sunday March morning.
I was 10 years old ….
The sad thing was I already knew what was coming when my Dad delivered the news to my sister and I….
I was up in the what felt like the early hours of that Sunday morning needing the toilet (or maybe I just Knew something was up )…..
Anyway a was hanging over the top rails of our banister legs stretched and chin on the railings as I had done many times in my younger years I loved watching my mum and dad entertain adult friends…..Twister, a few tipples and a load of adult silliness made for an entertaining evening …I remember sometimes being allowed down to enjoy the fun and other times winging continually wanting to join in ….
These early hours were strange…
There was a chill in the air ….
My nightie wasn’t keeping me warm that night and my bed didn’t beckon me back to it ……
I was watching my Granny talk on the phone …..
I had held my breath so as not to make any noise as I knew I shouldn’t have been listening….
I was shocked….I couldn’t take in what she was saying ….
I crept back to my bed… I remember climbing back under my sheets and lying there unable to move, unable to breathe, unable to do anything…
My heart thumping it had shattered into a million pieces …
Grief spread over my body….and that feeling is a feeling I have never lost ….
Surely I hadn’t just heard Granny say that John was at the hospital and that Lynda was gone …..
I was so confused…..what I felt in my gut, in my heart was so painful….. where had she gone??
I must have dozed off and then I must have been woken up.
I must have been given breakfast and then I know I walked up the road with my sister to our local church …
But I don’t remember how the morning really unfolded I just felt emptiness…..
I don’t even know if I saw my dad until after church that morning…..
But what I do know is that I had to tell someone what I had heard as it hadn’t made any sense to me….
I didn’t know how poorly my mum had become.
My sister and I just seemed to be pushed from pillar to post or that is certainly how it seemed over the last few weeks of my mum’s life……
Her diary told me differently which I will cover a bit later … my uncle had spent his time studying by her bedside……nan and grandad busy juggling us and dad and visiting and my auntie was living away and had been around alot as she had given her marrow…….dad was just about holding it all together in public but ….
Why hadn’t we seen her?..
where had she gone?…
So as soon as I saw Angela the words were falling out of my mouth …
“I think my mum has died” …..
We belonged to the youth group at Moordown Baptist. I held my sisters hand all the way to church that morning ….I wasn’t skipping but she was….
It was an amazingly supportive church group where we could hang out for bible studies, Sunday school or youth club. Rick and Jane were youth leaders if I remember correctly and Jane was the daughter to one of my mum’s closest friends so it was a very happy supportive and caring place for us to be.
I remember walking home holding Chantal’s hand tightly and I remember the front door opening as we arrived home….
I remember my Dad sitting Chantal and I on the stairs and then telling us that our mummy had sadly died that morning……I was haunted for many years by the unfolding of this scene….and you will have read in my Glastonbury blog that this was part of the healing process arriving back on the stairs nearly 30 years later…
Chantal fled up the staircase I know that much, but to be honest I don’t remember much else.
I do remember family being present and I remember their eyes searching my face for a clue as to how I may react. I remember the sadness in their eyes…
I remember my dad’s hands resting on my knee…. they were so big…. yet they weren’t tickling me or making me squirm the way he usually did (I never liked it when he wiggled our knee caps ) !!! …
I really don’t know how he ever had the strength to tell us.
As an adult now I feel his pain….
I wonder how I would ever have had the strength to bear such news to my children…..
I remember going for a stroll on the common behind our house later on in the day and an old gentleman tipping his hat as a sign of respect.
We must have looked a sorry state for this gentleman to have tipped his hat, a mark of respect ……
We certainly can’t of looked like we were walking off a wonderful Sunday roast…..
It’s funny what you remember …
I remember seeing the white fluffy clouds racing though the blue sky ….I must have been looking up into heaven for most of the walk, hoping I might have seen my Mum ….
To this day if I want to be close to my Mum my eyes are drawn heavenward bound.
They always end up searching the vastness of the sky.
I will look up to the clouds or up into the rain. You will always find me searching the night sky my eyes wandering amongst the stars ….
It’s where I do my thinking ….it’s where I feel free and oddly safe ….
My Mum’s story brings mixed emotions …
She died aged 32 and left so much sadness and grief behind her …It was a really horrible time for all of us.
I know that every member of my family felt a huge loss when my mum lost her battle to cancer. In fact I can tell you that the whole of Bournemouth felt our loss as well.
My mum had become an 80’s celebrity… I suppose now I look back it is warped but isn’t a lot of media ……..
She had allowed the local evening Echo to follow her story and the public had helped with fundraising as the Bone marrow appeal fund gathered its pace aiming high.
Her odds were 1 in 4 million ……
1 in 4 million…….
My dear mum was the first person in the UK to try this technique. The medical team were to use an anti-body called Campath 1 supplied by the
Cambridge University which had been especially developed to fight the rejection process of any transplant process.
12thJanuary 1984 at 8.30am 3 of the country’s top hematologists would have been scrubbing up in a bid to cure my mum of Leukemia…
£250,000 was to be raised to help set up a permanent bone marrow Centre in Bournemouth so all the local businesses did all they could to raise funds and many letters went out to the local businesses organizations and individuals in the hopes that people would come forward and donate….
Well the letters and donations kept coming ….
I suppose this is how you raise awareness and raise funds…..So my mum’s story went to print…..
On the 13thJanuary 1984 my mum was sat in bed laughing with the nurses as an all-day drip transplant from her sister’s bone marrow was intravenously fed.
My dear Auntie Laura had undergone 3 hours of surgery early on as she had billions of her bone marrow extracted…
It’s funny that the press picked up on the fact that throughout the ordeal both sisters had displayed the plucky true grit the Papworth family pride themselves on ….
Perhaps that’s rubbed off on me …..
My mum was isolated for 2 weeks as she was left with no immune system after her 7 hour operation. This was the most critical time for her and the staff had to be on their guard against infection.
17thJanuary 1984 the local paper reported on how good mum was doing. The news reported that she was eating well, sleeping well and was keeping cheerful…
That’s just how I feel right now ….Just like me, despite what was going on she wasn’t going to be kept down ….
She was spending her time watching colour television in her room, cooking her own meals in a microwave oven in order to cut risks of picking up an infection from any food she was eating and writing cards and letters to all her well wishers…..she had also started a diary of her day to day fight against Leukemia….
It was reported that she woke suddenly the night before her transplant and felt absolutely confident that everything would go well.
On the 21stJanuary The papers said my mum was over her first hurdle as the doctors reported that results came back from the labs showing that the bone marrow had taken.
I smile as I think about how overwhelmingly pleased and relieved she must have felt …..a chance to catch her breathe ….
She had undertaken the first bone marrow transplant in the south of England and it was reported that she burst into tears on hearing the news that the bone marrow was growing.
A newspaper article dated 4thFebruary 1984 took place over the phone with Mum. It was the first interview she had done since 12thJanuary. My Mum must have been a wonderful inspiration to listen to, as the write up gives me the sense of her gratitude and her strength she seemed so humble ….
It was printed that she said
“of course I’m waiting to get out of my hospital room, I’m still marveling at the fact I was given the chance of a transplant and I’m hoping others will be given the same opportunity.”
Apparently they reported that since covering the story there had been an abundance of card and greetings pouring into Boscombe hospital.
“It’s been amazing how people have been rooting for me. The doctors and nurses my family and friends have all been marvelous and I’ve had cards and good wishes from people I knew years ago who have read my story.”
The hardest thing about being kept germ free environment immediately before and after the operation she says was the sense of being isolated from those close to her.
“I never realized before how important it is to be able to touch people, and one of the happiest days I’ve had recently was when my daughters were allowed to visit and I was able to hug them.”
Now my mind is spinning….
I’m thinking outside the box …I’m in her shoes …a different disease ….but all the same emotions …As I’ve said before …I won’t die, but I certainly won’t be a sound state of healthy as I age …..
Everything happens for a reason right? …..
I had never read the reports with my eyes open …
I had spent the last 30 years wanting to know I was loved…
what was reported and the words she spoke clearly show that her family and Chantal and I were her world …..
I guess I wasn’t ready to read these reports or understand her emotions or feelings until now …..It was part of a healing process that my wonderful Nan helped us create a scrap book of my Mum’s story ..how this must have ripped her apart inside to do with us ….
I can imagine the pain she must have felt now I’m older and I am a mother myself…….
but my goodness she has left me with a clear picture of the type of woman my she was.
I am so proud of her……
The paper continued to say that when she leaves hospital it will be the “little things in life” which will mean the most to her ….
She said “it will be lovely to be in my own home with my family again.”
She also said “to be able to do the girls hair for them, to walk down the shops without getting tired and something I’m really looking forward to –to be able to go swimming again.”
I was so choked when I read these words …I sobbed hard and loud alone on my sofa …I was having a quiet day at home today …writing ….pulling from my resources …working through my memories box and resting up …The fatigue was hitting hard at the moment ……
on I read….
My Mum was lucky enough to have a portable colour T.V in her room once she was past the worst which meant she was finally back in contact with the world….. My goodness what we take for granted hey!! …..
we really should be grateful …..
I never really thought about the T.V being portable or even coloured ….
3rd February The echo reported that the bone marrow fund swells ….The public and businesses were right behind the charity and my Mum’s story was on display for all to read, the public were living the journey day to day with us…..
How do I feel about this ?…
Well I’m older now so maybe I see it with a twist …She was an ideal candidate to raise awareness …A publicity stunt to raise funds …..
She certainly was a Human Guinea pig ….My poor Mum….
Our poor family…. like we weren’t going through enough without the reports in our daily local paper ….
9thFebruary A small report says that my Mum had shown signs of rejection and was again being treated with drugs….
So she couldn’t come home…..Between the 18thand the 24thof February the papers reported that she was desperate to come home, but they were cautious .The doctors were concerned she had a viral infection on her chest.
Mum said on a phone link to the echo that she was looking forward to driving out to the sea, having a cream tea at burley and doing all the things she hadn’t done it ages…
“what I long for the most is to walk through my own front door and shut the door behind me “
By the time mum was ready to leave the hospital the tenovus appeal had raised £40,000 towards their total. My dad had managed to collect £1300 from the local businesses around our home and from our family friends and some of Dad’s customers …. Everyone was rooting for my mum …
I guess the story had been told …Everyone was waiting for the happy ever after …
The story would finish and we would all return to our normal lives….
The end ……
7 weeks after her treatment My mum Linda Smith was whisked home in a white Rolls Royce whilst the local T.V news crew rolled their cameras….
I have a small snippet of video from our local news station TVS COAST 2 COAST.
The story made medical history….
she was interviewed on the day she left Hospital and came home ….
She looked so happy….
Watching the nurses pack her suitcase and answering the question from the sister of the ward as the door to her isolation room opened …..
“so todays the day Linda ….did you ever think you’d see this happen?”
“nope it’s the day I’ve been dreaming of”
This part of the video goes all fuzzy …My dear Da has played this over and over …the footage is my Mums face …
she looks so happy….
…She talked about how the news of Acute leukemia had left her in shock…
she then said “time I didn’t have that much time without my sister’s bone marrow”
The over voice for the news report said “For her husband John Smith, the ordeal was just as tough, all he could do was sit back and watch”…
The interviewer then said to my Mum.
“You say time…. do you know how much time you had”?
“in the region of 2 to 5 years ,but no one could say really….” was my Mum’s reply.
“There was a one in 4 chance of a sister or brother’s bone marrow being compatible, lucky enough my sister was compatible by almost 100%”……
It upsets me when my Mum says the following words …
“shock… I went all cold “Then she pauses and continues with “then your mind seems to block it off …I think”…
I know how she feels …When something happens to you, you either lie down and take it or you fight …..Shock is all part of a process…..To digest any
form of bad news when it hits us certainly starts with shock, that is the first emotion …
is there room for Fear ?…
There sure is, but both these emotions although part of a natural thought process, cannot provide any support, if you want to live in control of whatever is happening in your life…..
Many of my friends family and clients have used the word shocked when talking with me…
Dad was then interviewed He was so proud of her …..”my wife is a very strong person … ….I couldn’t have gone through what she has …..She fought it …”
Dr Hamblin spoke “Her bone marrow is only 8 weeks old ..it’s like a baby. It’s very much at risk to infection. You have to mollycoddle it and we will have to mollycoddle Linda….. we will need to keep a close eye on her over the next couple of weeks”
One of the first cheques presented to the hospital for the tenovus appeal was £1300.00 raised by family and friends of the Smith family …..
given in gratitude of the life of Linda Smith….
My mum appeared while as the cameras snapped and the film rolled….
“Very kind of you …thankyou “were her first words as she stepped out of the heavy hospital doors.
She was given a huge bouquet of flowers and she then climbed inside the beautiful white Rolls Royce …”only the best for the trip back to Moordown” is what the reporter said
“ahhhh its lovely to breathe fresh air “is what my mum said smiling at my Dad and into the cameras …. The over voice continued to finish the report with the words ….
“Linda Smith is lucky to be alive”….
I can watch this over and over …. listening to her voice, watching her face, looking at her expressions….
I watch with so much amazement …she was so strong, so brave ……
Her head stone says she was brave and courageous to the last ….
Very fitting words for an exceptional woman ….
She is why I’m so strong now….
If my dear Mum can have that amazing attitude then so can I ….
She only managed 1 week behind closed doors and surrounded by her loved ones before she closed her eyes and took her last breathe ….
We weren’t there.
My sister and I had been sent away to London to spend time with our cousins …
Maybe everyone thought it to be the best thing …
but to be honest it was awful….
I never got to say goodbye to my Mum and I never got to tell her I loved her.
This would cause me no end of grief and heart ache as I grew older….
I had a head that was totally mucked up ….
Mum was re-admitted with pneumonia on week 8 post marrow transplant ….
She was seriously ill and had been placed on a ventilator. Dr Hamblin said that the pneumonia had resulted in her lungs being heavily infected….
That’s when it all went terribly wrong……
Monday morning, the day after my Mum lost the battle for her life the Echo plastered the advertising boards outside every newspaper shop with big black heavy words….
LINDA IS DEAD BUT OPS WILL GO ON …
BRAVE LINDA DIES-SHE JOKED TO THE LAST…
Looking back on these headlines I feel sick to my stomach.
I feel gutted ….
Gutted for her and gutted for all of us …
Why do I feel so much pain all these years on …?
I know headlines are worded to sell papers …but where on earth was the Sympathy or Empathy ….
The papers back then were printed twice daily so she took 2 front pages ….
She was in every echo readers house that Monday night ….
The shock ripped through Bournemouth….
I can imagine what people thought when they read their newspaper that day …
That poor family …those poor kids ….
A boards outside newsagents weren’t a health and safety risk back in the 80’s so I saw 2 boards on route home with the headlines snapped in place to sell the papers that day …..
The whole thing was very tragic a young mother of 2 whipped from this earth …
She still needed to be here with us …I needed to be mothered …Me and my sister needed our mothers love ….
I can read how the Moordown house wife and mother of 2 girls 10 and 6 whose courage and cheerfulness won the hearts of the whole of Bournemouth, was fighting pneumonia when she had a fatal heart attack at Boscombe hospital…..
Dr Hamblin said of his exceptional patient “I doubt I have ever had a braver patient, she never complained and kept cheerful making jokes to the last” ….I know my dad had a phone call in the early hours of Sunday morning and as you know from my previous writings that Granny was at our home sitting for us….
He doesn’t remember how we got back from London …But he does vividly remember what he witnessed when losing his wife …..
He will occasionally allow a small part of his memory out with words. Needless to say he is soon moved to tears and his face, which has aged so much now tells a story of a fragile man who’s world and dreams were left in tatters.I have no doubt that a piece of his heart died with my Mum….
His face is etched with grief his wrinkles deep with pain, his eyes full of tears …He looks so broken and we are 34 years on now……
His pain when he lets it creep over him is as raw as the day it happened ….
The chairman of Tenovus said he would continue with even more determination than ever before. “We’ll fight the good fight” …
Dr Hambiln was equally empathetic about continuing with transplant work and said
“if we were give up now Linda would have died for nothing….We owe it to Linda to carry on.
The bone marrow operation had in itself been a success; we don’t regard the operation as a failure in technical sense. Everything went right and no mistakes were made, but we do know that the cure rate was only 50% …
The heart attack had happened out of the blue and was not induced by the transplant” ……
Dr Hamblin didn’t regret the decision to let my Mum go home……In fact he said that in retrospect it was good that she went home, nothing we could have done would have saved her…….
It’s just one of those terrible things that happen….
My dear Mum knew she was proper poorly …she was exhausted and couldn’t breathe properly …. she went on the ventilator on the Tuesday ….
My Auntie Laura recalls that she asked her whether she was going to fight and if she was she was to wiggle her little finger ….
which she did……
On the Thursday the family were called to the hospital as Mum was close to death. However, my Mum fought back and with the help of the marvelous team on the ITU Mum held a fairly stable position and there was hope………
We all need to have hope ….
it’s in the moments of utter madness, when your world gets tipped upside down that hope along with faith and trust must all come together ….
How could I have hope and how could I trust and where did my faith go ……
Anyway my Mum was to finish her time on this earth …her job was done ….
Apparently Some people offered words of condolence like …”Her place is with the lord”….
What The F***….crazy words …. she should have been with us …With her family …
I needed a Mum …I really needed my Mum ….
I needed her here, how was I supposed to look after my Dad and my sister….
At 3.30 am on Sunday 11thMarch Mum took her last breathe …her heart could not cope with the strain….
The family was so adamant that she was to be remembered for her determination and her great courage as the story went to print on the Monday Morning….
Friday 16thMarch the crematorium was bursting with people wanting to pay their respects. There was no standing room left and people stood in the hallway running into the 100 seated chapel My family tell me of this as neither my sister or myself attended…….
How quickly she was taken from us and how quickly the funeral followed…..
I went to school as normal on the Monday the day after she died and I never attended the funeral.
I’m not sure who’s idea it was for my sister and I not to attend…
But for me It was the worst decision anyone could ever have made on my behalf, but I rest steady knowing that the rest of the family were in a state of shock and they would have done what they felt was best in that current situation….
I understand that they thought it best to keep us from such a sad event, I really do, but for any child to grieve properly they cannot be shielded from death. It is a natural process and death must be given the respect it deserves ….
We really needed to say goodbye.
Me and my little sister needed to say goodbye …
We never did get to say goodbye or tell her how much we loved her.…..
Oh my goodness how painful it is ….
I get that this had never happened to our family before, so how on earth did they know what would be the right or wrong thing to do…..
However, I would spend the rest of my days hurting….
She was gone, I couldn’t ever except that ….
I never got to say goodbye….
It may have helped with the closure and helped me with excepting of this awful tragedy ….
I cannot express how proud I am of my Mum’s strength and her fighting spirit…..
The months we spent in hospital sat with her on her bed, dressed in blue aprons, masks over our mouths and shoe protectors on really feels quite surreal when I think back….
No child should have to hold those memories …..
The friends and family rallying around passing us from pillar to post as the family tried to deal with Mum’s fate really didn’t seem to affect me at the time…..
I drew her pictures that were pinned to her notice board and I even managed to sew a beautiful stuffed bunny with a baby sitter over quite a few sessions that Mum hung on her bed …
This went in the coffin with her I know that much…..
We visited often and when she was intensive care we were lifted up to the small face sized window set in the door to wave and blow kisses to her…..
We even shoved drawings under the door to her …
Maybe we shouldn’t have done that, infection could have easily been spread by us …..
This window would play a significant part in my healing process later on in my life. It was to reappear in a very predominant meditation session in Glastonbury 2014, when I went with my girlfriends to celebrate our 40thbirthdays….
Little did I know back then the effect this door would have had on me ….
I remember all her hair falling out and her wearing a blue and white or red and white head scarf as her wig wasn’t very comfortable….
I remember wearing her wig or my sister and I would put it on our tiny tears dollies that we were given at Christmas …
I remember telling her as I brushed the wig into shape that I was going to be a hairdresser when I grew up…
funny thinking back on that …..
She had two horrible tubes coming out of her chest which she always seemed to be connected to a drip of some sort. I didn’t like that at all.
The staff were always hurting her…..
So I’m thinking about it all ……
and actually It has affected me beyond words and it affected my poor sister too….
the loss of a mother was way too much to suppress…..
It’s funny ….you fall when you’re least expecting it ….
How would anyone think we could breeze through the rest of our life after losing our Mum with no solid support and no chance to access some form of counselling…
Guess it wasn’t popular back then….
We were kids …we were resilient; we didn’t need counselling …
we wouldn’t be affected right?
Oh my goodness they were wrong …..we needed so much support and so much love ….
But ….no love is the same as a mother’s love ….
And I miss her every single day …… I know she would be proud of me and my family ….and I know she lives within me ……I draw strength from these words …
why should I be out of mind because i am out of site? I am waiting for you for an interval, somewhere very near, just around the corner, All is well ….
I am so proud of you Mum and your fighting strength leaves me with a fighting spirit and totally inspired to keep smiling and pushing through with a belief that I will be strong enough on my weakest days to pull through …
I wont say goodbye but perhaps see you sometime soon but not too soon hey !!! I’m a wife now and a mummy and a nanna I have so much to live for ……….but I know you know all about me because you never really left us. …
you only slipped away into the next room …….. .