Category Archives: brain tumour

Sunflowers again

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Tuesday 8th September

Your sunflowers in the back garden continue to grow skyward, and we will bring you some more of the blooms tomorrow. They stand so very tall, with their smiling faces following the sun.

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One of your tall sunflowers

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Ten feet tall

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Too high to touch

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Up to the clouds

These are the flowers from the seed packet you bought back in March.
Your “Tallest sunflowers in the World”.
And they sure have grown mighty tall and strong, almost twice your height.

I hope you can see them, and smile.
I just wish that you were here.
Thinking of you always.
Missing you so much.
Love you forever.
Sweet Angel.
xxxxx

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Back to school

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Monday 7th September

For quite some time, you had an assisted work placement at a children’s nursery. You loved putting on your ‘uniform’ of a turquoise t-shirt, and walking by yourself to the pre-school in the mornings, to set out the toys, books or play equipment.

You loved being with the group of young children. They were non-threatening, and you enjoyed being in their company. Despite having Asperger Syndrome, you were able to be one of the team, gain your First Aid qualification, along with the rest of the staff, and have a certain amount of responsibility for the youngsters.

Today would probably have been their ‘Back to school day.’

I wonder if they thought of you today?
I wonder if they miss you?

In a card from the school, they had this to say about you:

“As I’m sure you are aware, Frank helped out at the pre-school for a number of years and he really was one of the team.
Frank was always kind and patient with the children, without exception he demonstrated great empathy, particularly with children who were very shy or lacking in confidence.
Many of the children loved nothing more than settling down in the reading corner with Frank reading them a story or three.
We were extremely fond of Frank and we are going to miss him a great deal.”

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You loved your ‘job’ there, and would often talk about your day looking after the children.

I’m sure they do miss you.
You meant something to everyone you met.
You made a big impact on so many people.
We all miss you so very much.

Have fun playing with the Angel children.
Soar high, sweetie pie.
Love you forever.
xxxxx

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Kisses to the sky

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Sunday 6th September

“Blowing Kisses

I blow your kisses to the sky
And off to you I let them fly
Each one a wish I wrap in love
Then send to you so high above
I feel you watching as I do
And know you hear each ‘I love you’
So every day I’ll send them high
These kisses I blow to the sky.”

Such a lovely poem for you.
And I do tell you ‘I love you’, every morning when I wake up and look at your photograph, every night time too, before I switch off the lights, and every day when we visit your graveside.

I love you so very much.
I hope you can hear me when I tell you that.

Sweet Angel son xxxx

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Sailing 2001

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Saturday 5th September

In the summer of 2001 we flew into Charlotte Amalie airport on the US Virgin Island of St Thomas, to meet up with my father. He had decided that we should join him for three weeks of sailing around the British Virgin Isles. His 42′ Beneteau was comfortable, and had enough room for the five of us (Dad and I, you and your brother, and my father).

Our first few days were spent at Jost Van Dyke, with incredible sugar-white sand and welcoming beach bars. One afternoon a flotilla of charter yachts arrived, and on-board one of these was quite an incompetent crew; thinking they had secured the anchor, they went down below. A few moments later, their yacht was headed on a collision course with ours. Lots of shouting, quick thinking and use of a spinnaker pole and fenders, soon had the situation under control, with the wannabe sailors looking very red-faced indeed.

A few days later, there was another incident from the same group of sailors. We were relaxing in the stern of our yacht, when a tender casually floats our way, unmanned. My father caught it and tied it up to his yacht. It was quite some while before the flotilla skipper came round, thanked us for looking after it, and then returned the dinghy to the hapless crew.

From Jost Van Dyke we sailed over to Soper’s Hole on Tortola, and then to Road Town. The buildings, the people, the food, the music were all so incredibly colourful and full of fun and energy. In the Pusser’s Rum store you were fascinated by the large stuffed tiger.

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Frank and tiger. Pusser's Rum. Tortola.

We anchored off Norman Island for a few nights, with marvellous caves for snorkelling and swimming. Just around from the caves, in a wonderful bay, was the terrific Billy Bones Beach Bar. We managed to secure a mooring and took the tender ashore to have some food and drink. As a welcome, we were all given rum punches. I think you grabbed three or four from the tray, before anyone noticed. I remember you did enjoy them. Our waitress was called Candy, and I think she took a real shine to you.

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Frank and Candy. Billy Bones Beach Bar

Next to Norman Island is Peter Island, with the most magnificent stretch of white sandy beach. Having anchored the boat, we all jumped overboard, and swam for the shore, playing about in the surf.

Our next stop was to be Marina Cay, and we arrived here in a sudden squall of heavy rain, obliterating all sight of land, but we managed to anchor safely, and the skies soon cleared. One afternoon we climbed to the top of this island where you found a library full of interesting books, (I think it was a room in the original house owned by Robb and Rodie White, who had bought the property in the 1930’s. He wrote the book, ‘Two on the Isle’.)

After Marina Cay, we headed over to Spanish Town on Virgin Gorda, and stayed in an actual marina for a few days, hooking up to air conditioning was an absolute luxury. One of our memorable days out from here, was to the Baths. Huge granite boulders cluster together to form grottos and spectacular pools. We clambered over the smooth surfaces, grappling with rope ladders, to reach the amazing Devil’s Bay. The snorkelling was superb. You and your brother enjoyed jumping and diving off the rocks.

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At the Bitter End Yacht Club, where we anchored for almost a week, your brother had windsurfing lessons, and you splashed about in the club’s swimming pool. We wandered around the beaches, the clubhouse, and marvelled at the super-yachts alongside the dock. A calm and peaceful place to chill out and truly relax.

On our way to this last anchorage, we were sailing quite a way out from the shore, and my father rigged up some fishing lines from the back of the yacht. Miraculously, or so I thought, we caught our dinner. A good sized tuna. Your brother managed to jump across, into the tender, which we were towing, and unwrap the line that had caught around the propeller. You had to show off your strength, and picked the fish up by its tail. My father gutted it, and we had a barbecue that night of freshly caught ocean tuna. Absolutely perfect.

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This really was an awesome holiday. If it became too busy anywhere, we’d pull the anchor up, and sail to somewhere quieter. Both you and your brother enjoyed the swimming, snorkelling, sailing, watching shooting stars, fishing, beachcombing, windsurfing, and wakeboarding (my father had bought a wakeboard to tow behind the tender. It certainly was great fun.)

A lifetime ago.
But such precious memories of you, and the incredible times you experienced.

Love you, my happy Angel.
Sailing sunny shores with your grandfather now, I’d like to think.

Missing you like crazy xxxx

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Your Angel in the sky

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Friday 4th September

“Every day and every night,
When you feel the need to hold me tight
Just blow a kiss into the sky,
For I will be that close by.

In the Heavens throughout the day,
I watch over you and hear you pray.
I see you smile and shed a tear,
For you know that I’m still near.

I’m the Angel of your eye,
Your Angel in the sky….”

I love you dearly my precious Angel son.
You really are my Angel in the sky.
xxxx

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Your sunflowers

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“The one who left gentle
footprints on our hearts
left a story worth telling.”

How true that is of you.

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Thursday 3rd September

Today is your ‘Sunflower Day’.

Four days before you gained your Angel wings you bought a packet of sunflower seeds, proclaiming that you were going to grow the biggest sunflower ever.
That was way back in March.
A lifetime ago now.

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So tall.

I wish you could have been here today to see your wish come true. The plants must be over eleven feet tall, swaying about in the breeze.

Dad had to stand on a stool, and still had to reach up to cut the stems. We decided the first sunflowers to bloom would be for you, for your place of rest. Three strong, bright yellow flowers are yours.

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Your newly-cut flowers.

We took the sunflowers to your graveside, and as I was cleaning the vases, Dad showed you your flowers, talking to you all the time, hoping you’d be pleased with the colour and size of them.
‘Your beautiful sunflowers, lovely boy.’

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Your sunflowers in place.

It’s Thursday again, twenty five weeks since you passed.
I still can’t believe you’ve gone.
It really doesn’t seem possible.
I miss you all the time.
And seeing your sunflowers today, grown from the seeds you selected, brought home to me how very precious you were, are, and will always be, to me.
And I felt so, so sad..

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Beautiful yellow sunflower.

I love you so very much.
I wish you were here so I could tell you.
I miss you with all my heart.
I wish you were here so I could hug you.

Sweet sunflower dreams.
Angel son xxxx

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For you, my darling.

Another dinner

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Wednesday 2nd September

As your brother’s girlfriend is flying to Spain tomorrow to be with her mother, he phoned me earlier to see if we could all go out for dinner tonight. So it’s off to the Curry Garden for seven o’clock.

The meal was very good indeed. We spoke about all going to Spain together one day. We also talked of our previous holidays with you in Hong Kong, Chicago and Greece, and the good times we had.

We recalled traveling to the summit of the Peak in Hong Kong, and crossing the bay on the Star Ferry. We laughed at your brother when we remembered how upset he was when he couldn’t go on the rides at Ocean Park as he wasn’t tall enough, (he was only three years old then.) We reminded him of our trip to Stanley Market, where a man painted pictures on t-shirts for you both of Teenage Mutant Ninja Turtles, with your names below. You loved those.

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Teenage Mutant Ninja Turtles 1990

We told your brother about your amazingly tall sunflowers and how they’re just about to open. We haven’t had brilliant sunny days, but the plants have certainly grown and grown. When they’re ready, we’ll pick the first ones and take them to you. Your “biggest ever sunflower in the world”. That’s what you wanted.

Anyway, we said goodnight to your brother and his girlfriend, and wished her a safe journey for tomorrow.

We wished you could have come out to dinner with us. We miss your place at the table.

Sending you so much love and kisses.
Thinking of you always.
Sweet dreams.
Angel xxxx

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The first of your sunflowers.

Clinical trial month twenty one

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Tuesday 1st September

An early start this morning to leave the house before 7am, as my first appointment at the hospital in Exeter is at 9:45am.

I am on month twenty-one of a clinical trial for the adjuvant treatment of malignant melanoma. A mole (the alien blob), on my left foot was removed in 2013, and the cancer was then found to have spread to the lymph nodes at the top of my leg.
Major surgery, a skin graft, a drain, cellulitis and lymphoedema followed.

I signed up for the Combi-Ad trial using drugs called Dabrafenib and Trametinib, beginning at the start of 2014. (In the first year I was traveling to the hospital every four weeks.) It is a five year study, and in year two I go to the hospital every three months for a dermatology check, blood and obs, a CT scan and an oncology consultation. Sometimes there are other check ups too.

My first stop today was with the consultant dermatologist. She checks me all over, carefully looking for any weird looking moles. None were found, thank goodness. But she did want to remove some seborrheic keratoses under my arms, using liquid nitrogen. It’s a very cold spray, that stings a little. She said these ‘things’, like warty moles, should go crusty, then manky, then fall off. How lovely.

I then had to go to another hospital for an appointment with my trials nurse, who took my blood pressure (pretty normal today), my temperature, pulse and weight. No bloods today for some reason.

I saw the oncologist for another full body check and a chat, then had a couple of hours to wait for the CT scan. We went and sat in the car, in the car park, to get away from the hospital germs ~ lots of people coughing and sneezing.

I had to wait awhile before they were ready for me in Medical Imaging, dressed in the ubiquitous hospital gown. Not a good look.
My vein was easily located and the radioactive contrast pumped in as I went through the machine. The procedure was over in ten minutes, and then we could begin our long drive home. I now have to wait a week for the results.
Scanxiety will ensue.
Melanoia will set in.
I will be anxious and perhaps a little paranoid, until I hear from my trials nurse about the results.
That’s what melanoma does to you.
Constantly vigilant.
Always hopeful.

It was after five o’clock when we stopped at the cemetery to visit you. The sun was casting long shadows, but it was still fairly warm. We told you all about the long, uneventful day, and how you probably would have been very bored. Or you might have gone off into the city with Dad to look at the shops, leaving me at the hospital. You liked Exeter, and used to enjoy browsing through the stores, feeling safe in an environment you knew quite well.

When we finally arrived home, I had a message from your brother’s girlfriend. Her mother had been taken into hospital, and has been diagnosed with cancer. (We’re not sure what type, or of the treatment.)
She is very upset, and will be flying back to Spain on Thursday to be with her mother.
We walked down to see her, as unfortunately your brother had to work tonight. We sat with her, talking and drinking tea. We then suggested a bit of fresh air, and had a walk along the harbour to see the high tide.
We left her making pizza for your brother for when he finishes work.
We said goodbye with lots of hugs and kisses and hopes.

Miss you sweetheart.
Love you so very much.
Beloved Angel son.
xxxx

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Share everything with me

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Monday 31st August

“Pretend I haven’t gone anywhere
and share everything with me.
I can hear you!”

We spent a long while with you at your graveside this morning. Dad decided to sand and varnish your simple wooden cross as it was losing it’s sheen with all the wet, dull weather we have been having. Soon we will have a proper headstone for you, but in the meantime, the wooden cross with the brass plaque serves you well.

We do talk to you constantly, as if you can hear us. Round about eleven thirty, the aeroplanes make their way across the sky, westwards, towards America. They leave their dissipating vapour trails as we look up, and we wonder if you are aboard, headed for Florida, and which theme park you’re going to today. Or we speak to you about your brother and his girlfriend, and how they are getting along. Sometimes we moan about the weather, but it wouldn’t bother you at all: coat on, hood up, and off you’d go for a walk around the town.

We tell you all the time that we miss you so very much.
We tell you that we wish you were still here with us.
We wish we could see you, put you in the car, and drive away.
We wish we could still be looking after you, keeping you safe.
We wish we could travel with you, and share adventures.
We wish we could hear your voice, and listen to your laughter.
We tell you all these things and more. All the time.
If only you could hear us, and reply.

Love you forever my sweet Angel son.
xxxx

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One day at a time

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Sunday 30th August

“I try to take one day at a time.
But sometimes
Several days attack me at once.”

How true is that statement?

For quite some time now I have been holding it together. Well, I’d like to think so; my outward appearance gives that impression, whilst inside I’m filled with sadness and grief.

Every now and again I have a little help from prescription pills, but I don’t like to take them regularly. I do take St. John’s wort though, every morning, (supposedly nature’s prozac), and I do believe it does take the edge off of stressful situations or episodes of depression.

Today whilst out with my husband, mum and sister, (our regular Sunday ‘shop and lunch’), I felt ‘funny’. A strange tightening in my throat and neck, pain in my head and stomach. Most unnerving. My husband is convinced it was a panic attack. But I don’t panic. I’m sensible, I’m calm, I don’t worry, I’m level-headed. Or I would like to think so. But today, I just didn’t feel right.

Maybe several days were attacking me all at once. Maybe my grief just wanted an outlet, and bubbled up to the surface for a while. Maybe last night I didn’t really sleep properly and was awoken by a nightmare, silently screaming.

It took a bit of time, but sitting down, making an effort to breathe slowly and deeply, the tightness around my throat and chest began to lessen. My hands no longer gripped the edge of the table so firmly.

Was it a panic attack? I really don’t know. But I didn’t like the way I felt. Most unusual.

I do know that I think about you constantly: right from the moment I wake up, when I see your photograph on my bedside table; throughout every minute of the day; during the time spent at your graveside; to the evening when I close your curtains; and then when I sleep, when I try to have happy dreams about you.

I miss you so much.
Sending love and kisses and hugs.
Sweet Angel of mine.
Darling son.
xxxx

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