Tag Archives: brain tumours

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It’s been a while since I last wrote to you or had a letter from you in your distinctive writing and I miss you. I miss your letters, your adventures, your wit, your friendship, your laughter, our conversations, our gatherings.  

I miss you.  It’s been a year since you died and I think of you lots. From the moment we met at school to the day I saw you before you died you were always there, just there.  In another dorm, on another table, in a different classroom, in another country.  Now you’re somewhere else.  As you said about dying you were going somewhere and it’s not going to be a case of being able to write home and tell us all about it.  You’ve gone somewhere we will all follow at some time and when we get there you will greet us with a grin and show us around. 

My world is very different now.  In your last months you softened me!  I was so angry that you had a brain tumour, but you weren’t angry – you were positive and in turn your positivity changed me and how I see things.  You didn’t just accept that your life was nearing an end you positively grabbed what time you had left and gave your family and friends so many happy times.  You never made us sorry for you, you carried on being you but you with a brain tumour – in a wheelchair at times.

Even when you were tired out and felt crap due do the medication or discomfort you never once said you didn’t want to see us, you always chatted on the phone asking about our lives and our families.  When you heard from people we’d long forgotten about you joined in with the banter we knew so well.

When I saw you that last time I knew your bags were packed and you were ready for the off.  You lay in your bed, eyes closed and they twitched, your hand moved in my hand and at that point I knew.  I knew that wherever you are you will always be in our hearts and nothing or no one would ever take that away from me.

Dear Charch – it’s been a year and I’ll speak for the others when I say we miss you.

Xxx

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Cancer is such a nasty word, an evil disease and I hate it

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I’ve got this friend, she’s called Clare, she’s an Aussie married to a Frenchman, I call her Madame Cholet. Our girls were at school together, we’ve spent summer holidays with them in Brittany and La Rochelle, we’ve done the Bordeaux city break and she stays here when she’s in the UK.  I also call her often as she’s moved to Bordeaux. She’s had breast cancer that spread to the hip and lung, she wore a wig and never lost her sense of humour.  One summer Laree woke up in the night and walked into the wardrobe, then screamed as she was lost.  Cholet ran in with her bed bonnet on – that stopped Laree crying!!  Sometimes we don’t speak for weeks but it doesn’t matter. For some reason it did matter to me last Sunday as I dreamt she had gone on the lash with a Twitter follower and they were sending selfies and cocktail texts.  Charming.

The next morning I had a message to call her after school run so I did.

The chat went like this:

N. Hey bonjour.

C. Hey there g’day

N. Phoning before 9, not had coffee

C. Oh darl

N. What’s the news?

C. Well I didn’t want you to hear in an email

N. Oh shit. What?

C. Well I wasn’t feeling too great during a class and …

N. Yes and what?

C. The cancer has spread to my brain

N. No. How bloody can it?

C. I know

N. So what now? Am I coming to Bordeaux soon?

C. That’d be lovely but I don’t know how I’ll be what with treatment and things

N. I can hold your hand

C. That’d be nice

N. With a glass in the other

C. That’d be nice

N. So what?

C. Well I don’t know when I’ll start radiotherapy and chemotherapy

N. Shall we do birthdays?

C. That’d be good.

N. What’s the oncologist say?

C.  Well the onco …

N.  Onco!!!

C.  Yeah well the onco says radiotherapy for 4 weeks

N.  Will you get a new wig?

C.  No I don’t think so, besides I have my one from last time and it suits me.

N.  Want me to shave my hair off?

C.  No blood way you’ll look bloody ridiculous

N.  Thanks!

C.  So what other news have you got?

N.  Oh nothing really, I’ll save it all for when I come and see you!

C.  I’ll look forward to that.

N.  Great well I will look at flights and when we know what’s what I will appear

C.  I really can’t wait.

N.  Neither can I.

C.  I’ve got to go now as the other phone is ringing

N.  OK phone me when you can.

C.  Will do, love you.

N.  Love you too.

Got off the phone, cried great big fat tears and then then phone rang again about 10 minutes later.

C.  Hello darl.

N.  Hey, what’s the news?

C.  Have you had coffee yet?

N.  No not yet what else are you going to tell me?

C.  Oh just that the car broke down.

N.  I’ll get a taxi!

Since then we have had lots of chats, I’m telling her stupid things about my day, she’s telling me snippets of her day.

I told the girls.  Loops nodded her head and said are you going to see her?  Mook burst out crying and said can we go and see her.  Laree asked if she was wearing a wig.

She’s begun radiotherapy this week.  I hate cancer so much.

I’m feeling nervous

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So today was a tad chilly standing on the touchline watching Laree play football, holding on to the dog’s lead, but it’s nothing compared to how cold it will be on my #huskychallenge next April.

I’ve never done anything like it before, I’m not a camper, I’d rather not get cold and I prefer labradors to huskies. I’ve got to get fit – years of denial and a serious bout of ill health has taken its toll.

It’s a challenge within a challenge.

I’m doing it to raise awareness of brain tumours and the symptoms. I’m doing it because it ends on the day I last saw Charch before she died.

I’m doing it because I can and in memory and in support of everyone whose lives have been affected by brain tumours.

And I’ll admit I’m a tiny bit nervous and could do with some support and encouragement.

https://www.justgiving.com/NellieHuskyChallenge/

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Coffee Morning at Oka

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I make no bones about my love of coffee and the gorgeousness that is OKA Direct. I’ve been drinking coffee for years and have been a loyal OKA customer for ages.

Mugs!  I love those mugs!

Mugs! I love those mugs!

Last Friday I held a Coffee Morning at the Sunninghill shop in aid of HeadSmart and The Brain Tumour Charity.  It was an honour and privilege as it is one of my favourite shops, full of stunning interiors from around the world, and we drank coffee out of my favourite mugs.  Shoppers and visitors were able to appreciate the surroundings whilst hearing about the work of the The Brain Tumour Charity and understand more about the HeadSmart campaign from my friend, HeadSmart champion and bereaved mother Sacha Langton-Gilks.

Here's Sacha

Here’s Sacha (and mugs!)

The weather was rather off-putting so not as many people attended as I would have hoped but we still had a great time and raised £150 for HeadSmart and The Brain Tumour Charity and those that did come along who had not actually been into an OKA shop were happy admiring the gorgeous furniture and interiors.  If you have never been they are shops of beauty and wonderment and you will need everything, or is that just me?

Visitors taking it all in

Visitors taking it all in

We also held a raffle with some lovely prizes – thank you to everyone who donated!

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I certainly enjoyed myself and I have got lots of inspiration for my house (when the builders leave!).

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Green is a very popular colour in my house and as much as I try and tame my green habit it never works, those green throws are on my list and the lamps, oh the lamps!

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My dog is way too large for this dog bed but it looks so cute and cosy!

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I love acorns and oak leaves (unless the latter blow into the house), so I particularly liked the napkins, they’re on my list!

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I have square room envy!  I love this wreath and cushions.

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After drawing the raffle I announced I would be doing the Husky Challenge which I have blogged about here!  I’ve never done a challenge like this before so it’s a challenge within a challenge!

Thank you to everyone who came along, thanks to those who shared the flyer (I was delighted with it – look it’s got my mugs and everything!) and thanks to everyone who bought a raffle ticket.

I’d like to end by saying a VERY VERY BIG THANK YOU OKA FOR EVERYTHING!

Hello Husky

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I’ve surprised myself and everyone around me!

You see I am lazy. Not lazy as in “doesn’t do anything lazy” as I do lots, or lazy as in “lazy morning lie in idling away the day lazy”, oh no this lazy I refer to is “lazy at doing something that’s a little bit different, that will challenge me and is so far out of my comfort zone lazy”. And by crikey am I going to do something that’s more than a little bit off the beaten track and oh so challenging. I’m going to do something so different for me that people laugh when I tell them, then when they’ve scooped themselves off the floor (because being lazy I’m certainly not going to help them) they are full of questions and interest and envy, and above all admiration and support.

You see I’m a short, fat, dumpy gym avoider, I favour warmth over cold, I prefer a cosy bed to camping, my dog of choice is not a husky it’s a labrador, I’m very comfortable thank you very much hurtling around the country in my Mini so the prospect of getting from one place to another is with consideration of warmth, comfort and ease it’s certainly not on the back of a sledge, being pulled by huskies and then stopping to pitch a tent. In the snowy Arctic circle. In Norway & Sweden. In April. I’m going on a husky adventure!

No. None of those things have crossed my mind. Much! It’s actually all I’ve been thinking of since I read up about it on The Brain Tumour Charity website. I spoke to a few people and they all said DO IT!

So why am I doing it? Well earlier this year Charch a school friend died from a brain tumour, a friend told me her brother died from a brain tumour, at Charch’s memorial I met a friend of hers whose daughter had died, shortly after Charch’s memorial I met a friend of another friend whose son had died 2 years previously from a brain tumour, a friend’s husband is recovering after a brain tumour operation, someone I recently met told me she’d had a brain tumour in her youth, a Twitter friend’s son has had a brain tumour and since announcing this challenge an author friend told me her late husband had died from a brain tumour. These are people I know and there are many other people whose lives have been affected by brain tumours. I read about brain tumours in the news on a regular basis and hear all too often about late diagnosis in children.

Why huskies, camping, cold? Why???  Away from my creature comforts, my family, 3G!!! Ah ok it’s only a week but what a week it will be! I’ll be in Norway where Charch taught and the challenge ends on 10 April which is a year to the day that I last saw her as she died the next day so I couldn’t not do it.

I’m doing it because it looks good fun, it’s going to be challenge to get fit and husky ready, I’m not a natural camper, as a skier I’m used to the snow and the cold but I’ve always retreated to a warm bar or chalet after.

In short it’s a bonkers idea but for a very good cause. I’ll be fundraising for The Brain Tumour Charity and in doing so will be raising awareness of the HeadSmart campaign and I’m doing it for Charch, Georgie, Sacha, Georgina, Sue, Lizzie and everyone whose lives have been devastated by brain tumours.

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SMART and Sacha

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I’ve been chatting to my friend Sacha Langton-Gilks. Do you know her? Oh she’s great!! Her son DD died from a brain tumour and she’s the Lead Champion for HeadSmart’s campaign for earlier diagnosis of children’s brain tumours. She’s recently started a petition and I’d be really grateful if you could sign it:-

https://you.38degrees.org.uk/petitions/the-headsmart-campaign-for-the-earlier-diagnosis-of-children-s-brain-tumours?source=twitter-share-button

You might have seen articles about her, like this one by Amanda Foreman or this one or this recent one.

I’ve not known Sacha long but when we met something clicked and we hit it off which is one of the reasons I’m keen to help her and promote the HeadSmart campaign after a friend died from a brain tumour, and being a mother myself I’d like to know the symptoms.

Furthermore she is keen to promote Text SMART to 81400, all you do is text SMART to 81400 and you get sent a text like this:-

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Sacha can be found on Twitter @SachaLG and Facebook.

Let’s all work together on this.

Please.