Charity: Rare Spinal Cord Tumour #JustGiving #Charity #SpinalCord #Tumour

On the eve of this New Year I am donating to Emily Parson’s Just Giving Page, please share widely and donate. This is such a sad story but one that speaks volumes of Emily’s courage and kindness.

Emily’s plight was brought to my attention by an old friend of mine and by my youngest daughter who has also heard about Emily. I’m donating to Emily Parsons just giving page. Please share this and consider donating to her JustGiving page too, the details of which are below. What a beautiful, kind-hearted person. Her family must be so proud. She is raising money to fund research into her incurable spinal cord tumour to help other young people like herself. She is only 22, bless her. Sending love and hugs to her and her family. x

Emily’s Story in her own words

Just after my 22nd birthday, I was diagnosed with a rare, highly aggressive, malignant and currently incurable, spinal cord tumour (Diffuse Midline Glioma, H3 K27M Mutation). Within just 5 weeks following diagnosis, I was given the prognosis that I have limited time to live.

There are less than 100 people diagnosed with this type of tumour in the UK each year, all of them will be between the ages of 3 to 25 years old and sadly all of them will die. The tumour grows rapidly within the Central Nervous System and has a devastating impact either on the spinal cord or the brain.

There have been no advances in treatment for this type of tumour for over 40 years. This needs to change so that other people and their loved ones face a more positive future and my real hope is that a cure can be found one day. In view of the rarity of the disease, there is limited information available which myself and my family have found difficult.

With the help of those around me, I have decided to set up this page to raise money to support a research project currently taking place within the Cancer Research UK’s (CRUK) Children’s Brain Tumour Centre of Excellence at Addenbrookes Hospital in Cambridge. This innovative research project has been jointly funded by CRUK, Great Ormond Street Hospital and Brain Research UK. The research is specifically studying tumours in the Central Nervous System in children and young adults with this rare mutation to identify targeted treatment options for the future. This particular research project is close to my heart because of its relevance to my specific type of tumour, it’s based at Addenbrookes where I have received treatment, and also with my love of children and my future aspirations to have been a primary school teacher it feels like a perfect fit.

In addition, I would like to share with you that whilst I knew there was something wrong, it took multiple GP appointments across several months before I was finally referred to a specialist. I know that for my cancer an early diagnosis would have been highly unlikely to make a difference to my prognosis, but for other cancers it could. We all know our own bodies, so no matter what your age, if something doesn’t feel right, don’t delay seeking professional advice, and don’t give up until someone listens to you.

I would really appreciate it if you could show your support by donating to and sharing
this page.
Thank you,
Emily x

Emily’s Crowdfunding Page: https://www.justgiving.com/crowdfunding/emily-parsons

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December 31, 2020 2

MarySmith’sPlace – Cancer Diary #01

I’m so sad to read Mary’s latest blog. She has been diagnosed with lung cancer. This blog is the start of her cancer diary. She is sharing her experiences through her blog and others in a similar position might wish to connect with her: https://marysmithsplace.wordpress.com/2020/09/06/marysmithsplace-cancer-diary-01/

Please support and send her your love by leaving a comment on her blog. Annoyingly FB has marked her blog posts as unable to share via the usual share buttons. This is happening to my lovely writing friends in the community for no apparent reason. It is particularly unfair at a time when Mary needs our support the most.

She is a fascinating lady and a wonderful member of our writing community who I have met in person at many of the London based blogging bashes.

If you don’t know Mary Smith, this is the link to her about page: https://marysmithsplace.wordpress.com/about/

And her latest afghanistan adventures blog post: https://marysmithsplace.wordpress.com/2020/09/05/marysmithsplace-travels-with-a-sheep-afghanistanadventures-51/

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September 8, 2020 18

Carrot Ranch Flash Fiction Challenge – She Fought So Hard

I’ve been meaning to join in the Carrot Ranch challenge for some time but it’s been so busy here chez Marje that I’ve not managed to. So without further ado I’m having a go.

She Fought So Hard

For a wee woman, you certainly pull in the big boys,’ joked keen fisherman Robin.

Melinda smiled; it had been a memorable day, she’d caught the biggest fish going. For a moment she’d forgotten her punishing chemotherapy struggle.

She never complained even when her hair fell out and grew back curly. Instead, she laughed; but it sounded hollow. I doubt she recognised herself.

Soft-hearted Melinda died within days of her fiftieth birthday. At the funeral I picked up her old school photo; I wept, I never knew she’d been a gymnast. Cancer the guilt bringer, I should have known.

The above piece of flash is dedicated to a work colleague and dear friend of my husband’s who died of ovarian cancer this year. It is partially based on a true story. She really did reel in a big catch and showed her partner up! She had such a competitive spirit and loved to play tennis in the Californian sun.

I didn’t know she’d been a gymnast.

During her illness we became friends. I regret that I didn’t have more time to get to know her better but cancer stole away that possibility too. She fought hard, loved life and it’s hard to believe she’s gone. Sometimes it seems to me that the loveliest people die before their time. Life can be incomprehensibly cruel. Everything was looking up for her, she had just started a new life in California with the love of her life. She had so much to live for.

Cancer sucks. 🙁

Do feel free to comment below… sadly… yours.

Here’s the link to the Carrot Ranch Flash Fiction Challenge:

https://carrotranch.com/2018/04/26/april-26-flash-fiction-challenge/

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May 1, 2018 13

#SundayBlogShare A Christmas Thought – Hoping for Ordinary Kindness and Love This Year

Wishing you a very Merry Christmas and all the best for a Happy New year.

I’d like to spare a thought this Christmas for all those who are lonely, or devastated by terrible news. Not everyone is surrounded by family and friends at Christmas. Perhaps someone you know will be at home eating baked beans alone. I know someone who is. His partner works shifts as a hospice carer, she will be working Christmas day, so he will be alone. Fortunately, they are having their celebration the day after on Boxing Day with a big family get together.

My heart goes out to my daughter’s friend this Christmas. Her mum is terminally ill with cancer and will not live much longer. I feel for her and her brother who are overwhelmed with much responsibility and sadness at such a young age. To add to their plight their parents are separated and they are young adults living alone.

Reflecting upon these overwhelming emotions are perhaps one of the reasons why I became a writer – to express those emotions that are not always easy to understand or to live with. Life can be cruel, but it can also be wonderful. So, I am going to spare a kind thought for her family this Christmas, and hope she finds the strength to deal with the ordeal that will surely follow. From what my daughter has told me she is a resourceful, admirable young woman, and I am sure her mother would be so proud of all she is doing.

2017 hasn’t been the best of years, has it?

There has been much senseless violence, sadness and loss of life, but I discovered a wonderful tweet from one of my writing hero’s: Stephen King which lifted my spirits …

Wishing for you all acts of love and ordinary kindness this holiday season. In the end, you know, most people are good.

— Stephen King (@StephenKing) December 22, 2017

Let’s hope that 2018 is a better year and that ordinary kindness and love will prevail.

Do enjoy the festivities, smile a lot, drink and be merry for life is short, but make it sweet.

I will be taking a bit of blogging break for a few days but I’ll be back in the New Year.

Much love, xxxx

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December 24, 2017 21

Edinburgh Festival: My Last Day and A Glimpse Of Princess Street Gardens

The final talk that I attended at the Book Festival was on Sunday 23rd of August, The Poems of Iain Banks, with Ken Macleod, a Scottish Science Fiction Writer, and lifelong friend of Iain Banks. The event was chaired by Stuart Kelly. It had been an interesting talk, suggested to me by fellow blogger, Stephen P. Blanchini, his blog is aptly named The Earthian Hive Mind: http://earthianhivemind.net/

I learnt a great deal about Iain Banks from this talk, and was struck by Ken Macleod’s obvious sadness that this lifelong friend that he had had the pleasure of knowing for such a long time was no longer with us. Very sad, it must be extremely hard to discuss a friend you have shared so many memories with over so many years, in such a public way particularly when you have had so much in common. I shall be delving into Iain Bank’s writing, and his poetry to find out more, but at this juncture I don’t feel I can do him justice by writing an in-depth article about the talk as in truth I just don’t feel I know enough about him, yet…. The fantastic thing about these talks is their ability to make you curious, and encourage you to read the author’s work which can only be a good thing. Ken mentioned that Iain’s strangest novel was A Song Of Stone, this features heightened prose, and a strongly dislikeable character. Iain was apparently disparaging about his final novel The Quarry. Ken suggested that The Quarry demonstrates a gentler revisiting of themes that appeared in his earlier novels. Ken said that there is almost an alternating nice hopper, nasty hopper with some of Iain’s books such as Whit, (about a young cult member,) Stonemouth, (this follows a man returning to a small seaport town after leaving due to a sexual scandal,) and Quarry, (which deals with an autistic youth, Kit, and his father, Guy, a misanthrope who is dying of cancer,) fitting into the nice hopper. The Hydrogen Sonata, a science fiction novel set in a techo-utopian Culture universe is possibly more optimistic too, though it takes part in Hell!

Sadly, Iain Banks died of Gallbladder cancer, as a token of the esteem he was held in the asteroid (5099) Iainbanks was named in memory of him shortly after his death. His dying of Gallbladder cancer got me thinking, I myself had a polyp in my Gallbladder which was discovered last year and I was operated on in October 2015. For a long time my symptoms were misdiagnosed, it took a trip up to Edinburgh, and a Scottish doctor to diagnose it immediately. The polyp was most probably benign but still it does make you think, that tiny polyp gave me so much trouble I’m so glad I went ahead and had my Gallbladder removed. Poor Iain.

After the talk the weather was so nice that I felt it would be a crime not to stop for an ice cream, so I stopped right by the large advertisement for the Book Festival that you can see at the top of this blog post. I had a feeling that I should wander on a bit and find somewhere that sold S. Lucas ice-cream, but there was no certainty that I’d find this wonderful childhood favourite which we used to eat in Musselburgh. So I settled for an ice-cream van at this spot, I fancied a chocolate wafer, a Scottish ice cream delight but was a bit disappointed to find that they’d run out, so I had to settle for a humble ice cream cone! Still it was very tasty and I lapped it all up. Of course, the inevitable happened I found a place along in the gardens that sold S. Lucas ice-cream, too late, I should have listened to that psychic voice telling me to wait! I couldn’t really justify buying another ice-cream so soon after the last!

As I ambled my way along Princess Street gardens taking in the sights I came upon the magnificent flower clock, this is a must see if you’re ever in Edinburgh, it is really pretty, especially on a sunny day. The floral clock can be found half way down the stairs into the gardens across from the National Galleries, at the foot of the Mound, commissioned in 1903, it was the first of its kind in the world. Oh, and amazingly it tells the correct time in flowers! How cool is that! Unfortunately my photographs could have been a bit better, there were a few shadows lurking about but still it does give you an idea of how lovely it is. I like how this wonderful display of flowers celebrates Books, Words and Ideas. Of course Edinburgh, my old home town, is the first UNESCO City of Literature in the world, and deservedly so.

More about that here: http://www.cityofliterature.com/edinburgh/

Links:

http://kenmacleod.blogspot.co.uk/

http://www.theguardian.com/books/2014/feb/18/iain-banks-final-book-poetry-published-2015-ken-macleod

http://www.telegraph.co.uk/culture/books/bookreviews/11422409/Poems-by-Iain-Banks-and-Ken-MacLeod-review-blazing-energy.html

So it was time to say farewell to Edinburgh until the next time. Time to go home and see my hubby and my daughters!

I do hope you have enjoyed all of my Edinburgh posts, I have bombarded you with so many of them but my excuse is simply this, I used to live in Edinburgh, I grew up and had many memorable teenage years there.

I love the city and always will.

Bye for now.

Marje @ Kyrosmagica xx

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August 29, 2015 18