by Sue Sims

Until Mark died and left me with his beautiful book to publish and promote, I had not imagined  becoming a public speaker. However speaking engagements have been rolling in as well as TV and press interviews.  I have found I love doing them. It’s another way for me to keep telling Mark’s story and to raise awareness of the horrible disease that is malignant melanoma. Other family members have been getting involved too. Dave made a speech at a data conference organised by Public Heath England. Also some friends have organised their own events to raise awareness and keep Mark’s story alive. We are very thankful to them.

Here are some highlights from these past few months.

Our book launches in Bath and Bristol.

Local press coverage. The story was also in The Daily Express, The London Evening Standard and other newspapers around the country.

TV coverage. I was interviewed by presenters Jonty and Ellie. ITV have been amazing supporters.

In the ITV studio.

Mark’s book at ITV – he’d be thrilled.

Magazine coverage below. Dave telling the moving story of losing his identical twin in Multiple Matters (TAMBA), and me telling Mark’s story to That’s Life magazine.

Public speaking at CRUK conference in East London and at Battersea Race for Life.

I also spoke at Bristol Race for Life.

Here’s Dave at the data conference in Manchester. Above Dave there is a shot of Mark giving a speech at Leicester University when he was first diagnosed with Stage 4 malignant melanoma.

The books have arrived and they are truly beautiful. You did a wonderful thing Mark, writing this.

You can order your copy in the Poetry Space online shop/

Profits will go to Mark’s Just Giving Fund for CRUK

For me it has been an amazing project, editing Mark’s 80,000 words and adding a chapter of my own in line with Mark’s wishes. All the family have helped in some way, by proof reading and advising. Now it is here, another lasting legacy for a beautiful guy.

Sue Sims

With the help of the family, I have now made a lot of progress on Mark’s book and it is currently at the final proof reading stage.  This is the cover:

I have created  a dedicated Facebook page for the book and have started to reserve books for people who would like to pre-order.I already have orders for 60 books. So thanks if that is you.

You can pre-order by visiting the page and sending a message.

The book will be published in paperback by Poetry Space Ltd and we plan to launch in February or March next year. It is 312 pages long and will retail at £9.95.

Profits from sale of the book will be donated to Mark’s fund for CRUK 

“Mark’s knowledge of medicine, personal passion and eloquence put him in a unique position which compelled people to listen. Incredibly, he gave his precious, remaining time (freely) to benefit future generations.”

Lynn Daly, Cancer Research UK

“It was Mark’s honesty and integrity that struck me. Brave is a word that seems to be used all the time these days, but Mark was truly brave, Even when he was incredibly poorly, he still wanted to share his experiences to warn others of the terrible dangers of skin cancer.”

Kylie Pentelow, reporter for ITV news. 

Sue Sims

Raising funds for Cancer Research UK was extremely important to Mark. When he was at his lowest ebb it gave meaning to his life to know that he was giving hope to people in the future. It is still vitally important to us to continue to keep the money coming in and we are so grateful to all of you  for doing your own fundraising and adding to the pot, and also for every single donation you give.

As many of you will know, I am currently editing Mark’s book and also writing a collection of poems based on my experience of bearing witness to Mark’s journey through cancer. I am making progress  and both of these titles will help to raise both funds and awareness.

In the meantime I am selling copies of my 2015 collection of poems, A number of things you should know in aid of Cancer Research UK. The book normally retails at £7.95 from the publisher and from Amazon books, however if you would like a copy directly from me please make a donation  for this amount or more on  Mark’s Just Giving Page and then Facebook message/text or e-mail me susan@poetryspace.co.uk with your details so I can put a copy in the post to you. As the title suggests I cover a variety of themes in this book, some personal, some fictional, some just on random subjects and I’m pleased that I’m getting people into poetry who have not read it since school.

Here’s an example of a personal one:

Dear Dad,

Our day’s been good,

you got to see your grandson and his girl. We all shared lunch and  talked and laughed.

Then I took you to the park

and pointed out ducks diving,

ducks emerging, shaking feathers, drying in the sun.

You loved it all and it was good to see you smile.

When I said I was going

you thought I was leaving you.

You get the idea sometimes

that I’m your wife. I do the things a wife does, empty your bag, wipe your bum.

Your logic’s good. I’m your daughter, I say. I’ve got a husband and you cry. I leave you with music to soothe your heart

knowing the carer is coming soon, to take you to your bed.

Susan Jane Sims

Dad died on October 24th, 2015, aged 94. He did incredibly well but in the last couple of years became quite frail physically and mentally due to age and to Alzheimer’s, another cruel disease.

On another subject, thanks for all the lovely messages I have had today from people knowing that today might be hard as it is Mother’s Day. This is much appreciated. I did hear from Mark’s three brothers, a lovely bunch of tulips arrived from Matt, and also an extra Mother’s Day card from Rob and Rachel in New York. That was so sweet of you guys. Perhaps we could invent an Auntie’s Day.

With best wishes, Sue (Mark’s mum)

Before February 2015, Mark  was just getting on with his life, he rang now and again, came to stay sometimes and I went to see him but that was it. I never wanted to be the sort of mother who needed to know what he or any of his brothers were up to moment by moment. I was happy to have confident sons who simply got on with their lives, had adventures, rang or visited now and again . I knew I was always welcome for the occasional visit to see any of them and having four sons, it never really meant that any got more attention than they wanted. I had my life, writing poetry, doing some counselling, running a small publishing venture and Chris and I were enjoying being a couple again after bringing up the boys. If anything all four have probably spent more time with Chris in their adult years as he likes to organise  walks and football matches. My sons were, and are an important part of my life but not the only thing I had in it. In fact Mark used to joke sometimes that I was often difficult to reach on the phone.

But all that changed with the advent of secondary cancer for Mark. We became very close, closer than I ever thought I would be with a son. On bad days we’d often curl up on the sofa with a video and I attended almost every hospital appointment, often with other family members, sometimes  just me and Mark. Between appointments there were games;  Ticket to Ride or Camel Cup when there were lots of us, Bananagrams or Scrabble  with just the two of us. Long hospital days in London came to mean visits to museums, the cinema, and once a lovely guided tour round Chelsea Physic garden with a keen volunteer. It got us out of the hospital environment between appointments and passed the time in a lovely way. Some nights when I could not sleep I would check my phone and find Mark was also not sleeping and wherever we were, we’d connect and play Word Feud. Even in those last days in The Royal Marsden, Word Feud continued until he could no longer see and the last game we played expired on January 9th, ten days before he died.

The last mortal remains of Mark William Sims were delivered to us from the undertaker in London, arriving in a green plastic screw top container as I knew they would . I was prepared with a shiny red steel urn and on the kitchen table poured the almost white ash from one container to another, at one point, letting it run through  my fingers like slightly gritty sand. Is this all I have left now?  I carried the shiny receptacle upstairs to Mark’s room, placed it carefully  on his shelf amongst his souvenirs. Later we will follow his wishes and scatter the ashes at sea. Yet for now it’s right to have the red urn on his shelf in the room he slept in all through his teens, the room he always came home to whenever he stayed. We won’t make it a shrine for ever, but for now it feels right.

It is twenty five days now since our beautiful son died. Our lives have been filled with the love of  family, friends, neighbours. I get a lot of joy from holding babies. We had a small intimate family gathering for Mark in London and we  have looked at hundreds of photographs, watched videos, listened to his voice on radio recordings. We have marvelled at how incredible he was and feel comforted to a certain extent to know how much he was cherished. But it can never be enough. It is so hard to not speak with him most days, so hard to come to terms with never again seeing that gorgeous smile in the flesh.

This week we are preparing  for Mark’s memorial event at Leicester University and looking forward to seeing many of you there. It starts at 2.30 in the Peter Williams lecture theatre but arrive a little earlier for a tea or coffee first.

Sue

Leicester University have kindly agreed to host Mark’s Memorial Service on Saturday 18th February 2017 at 2:30pm in the Peter Williams Lecture Theatre, in the Fielding Johnson South Wing. This service is to celebrate the life of our fantastic son, brother, fiancé, cousin, nephew and dear friend.

Update 15/2/17:

Parking Information for Saturday:
Service Starts at 2:30pm in the Peter Williams Lecture Theatre in the Fielding Johnson Building South Wing
For anyone driving on Saturday, please go to Entrance 1 on University Road. Parking is free on Saturday, the nearest car park is The Sports Hall but there are others nearby. We aim to have signs out on the day.
The coach to Bristol is scheduled for 6.30 return but can be earlier if everyone ready. The coach will drop you off outside the venue.

Mark ended his account of his tremendous and inspiring battle against advanced malignant melanoma with his last optimistic Happy New Year post.

I now need to tell you the desperately sad news that Mark died on Thursday 19^th January 2017.  The last 16 days of his life were spent at The Royal Marsden Hospital where he received superb care.

On the 4^th January Mark was given the news that there was no more treatment that could stabilise his cancer.  When asked by one of his consultants if he would like to stay, he said confidently:

Why not? This is the best hospital in the world and I am your favourite patient. Why would I go anywhere else?

Mark always had the ability to draw people in and even in the last days of his life made a huge impact on everyone who met him for the first time having already had a profound effect on the melanoma team who have looked after him for 23 months. His closest friends came in to see him and between us all we made sure he never had time alone.

We as a family are in awe of Mark’s courage and selfless attitude until the very end when he was losing both sight and hearing. As a final example, Mark made a brave announcement on social media telling the world he was about to die and setting a target of raising £100,000 for Cancer Research UK. Within 24 hours the total rose from £73,000 to well over this figure and the fund is still rising.

I know he would want me to thank all of you; his friends, wider family and followers who have lived each minute of this with him.

Mark died in peace and dignity surrounded by love.

We, his family and Georgie are so grateful for the way the staff at the hospital enabled us to do something I never thought possible, to come away with beautiful memories of this final chapter of Mark’s life.

The blog will remain online. Mark worked hard in the last few months to write a book based on his blog entries and to also tell more of his story prior to February 2015. Please look in from time to time for updates. The book will be published by Poetry Space, my own company by the end of this year and I plan to do a great job for Mark. He wants the book to continue to enhance the message about cancer and melanoma in particular.

Sue Sims (Mark’s mum)

Georgie has asked for this message to be included here:

Watching my 28 year old fiancé cruelly robbed of his sight, hearing, swallowing, walking, speech, along with any chance of a future was heartbreaking and wrong. He still managed to be so caring of others around him, worrying that he had not replied to messages or that we would hurt our backs when we stretched his legs.

In his final hours he was surrounded by all of us, we held his hand and kissed him. He passed away and we sang his favourite songs to him with the music therapist and his guitar. These were songs that Mark had sung with the therapist when he was admitted to the Marsden in early January. Mark had requested ‘our song’, You and me by Lifehouse the song we would have had as our first dance to at our wedding. The music therapist learnt it and it was the last song we sang to Mark. This meant so much and I did not want to let go of his hand. We are devastated and it has not sunk in that I’ll never see him again.

Thank you so much for your messages, they mean the world to me and I am trying to reply to all of them.Mark really appreciated you all, and I am so proud of him and feel so privileged I got to spend the time with him that I did.We had amazing times and he would have had a beautiful future with a great career as a doctor. Cancer stole this from him. He was determined to raise as much awareness as possible to beat Melanoma (an aggressive form of skin cancer that affects too many young people) He has donated his body to research to help them find answers to beat this disease. He has written a book and he’ll continue to raise money for Cancer Research UK. I’ll never forget the memories and he will always be my hero.

Georgie

Happy New Year everyone. A year ago today I proposed to Georgie and just wanted to share these videos. It has been absolutely amazing and she has been the greatest support for me over the last year and beyond. We’re one of a few couples who have been engaged longer than they were going out and probably one of a few couples who got engaged on the Royal Marsden steps. Georgie gave up everything to be with me, she could have gone out with anyone, someone much easier, she’d already made her life tough giving up on her already successful career as a Speech and Language Therapist in London and switching to do a medical degree. Going out with me put a lot of stress on herself and her ambitions. I love you Georgie, I’ll never forget how much you’ve given me…because you’ve given me life. 

Below are two videos. The first I showed Georgie before proposing. My Dad sent me the second video about a week after the engagement. Enjoy.

https://www.dropbox.com/s/7z05xw2h0nuhuuh/Georgie%20video.mp4?dl=0

https://www.dropbox.com/s/mr9p7tgokhldh9j/Mark%20%26%20Georgie%20engagement.mp4?dl=0