Monthly Archives: June 2015

A funeral today

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Wednesday 10th June

This morning we went to the funeral of one of Nan’s friends (the lady was 86 years old). It was held in the same church where we held yours, nine weeks ago. Nine weeks. It just doesn’t seem possible that it was so long ago. And yet I remember your service as if it was yesterday.

In the afternoon we came to see you: to talk, to water your flowers, and yes, we cried. We had so much hope for you, so much love still to give.

We keep your resting place tidy and full of fresh, colourful flowers. It is a peaceful place to come and reminisce, to remember and to be close to you.

Soar high, fly free,
Laugh, play and have fun.
My darling Angel son.

Month 18 ~ clinical trial

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Tuesday 9th June

And so it comes round again, a two hundred and fifty mile round trip to the hospital where I signed up to GlaxoSmithKline’s Combi-Ad drugs trial for the adjuvant treatment of malignant melanoma in stage 3 patients.

My primary tumour was on the fourth toe of my left foot. The Alien Blob. Unfortunately the cancer cells spread to the lymph nodes at the top of my leg, so I had those removed too. My treatment has been immunotherapy, combining Dabrafenib and Trametinib. I’m now on two years of three-monthly check-ups.

Month 18 has me visiting two hospitals and five different departments.
Dermatology first ~ “Ooh, I don’t like the look of that mole on your arm, it’s better off, in a pot. We’ll make an appointment to remove it.” Eeeewwww.
Women’s health next, for a cervical smear test ~ “Up you get, ankles in the stirrups, relax”. Eeeewwww.
Trials nurse for blood and obs ~ four vials sucked out of the vein in my right arm, and blood pressure much too high. Eeeewwww.
Medical imaging follows, for a CT scan. Cannula inserted into vein in left arm, radioactive contrast goes down the tube: breathe in, hold your breath, breathe normally. Three times. Eeeewwww.
Lastly to the oncologist for an all-over physical exam ~ “Oh yes, month 18 requires a rectal exam too.” Eeeewwww.

But still, despite all the tests, I’m glad that I am being so well monitored. I just have to wait a couple of weeks for the results.

I just wish my son’s treatment had worked for him. I am reminded of his chemotherapy whilst speaking with my trials nurse ~ we are in the day case ward, where people are hooked up to various cytotoxic mixtures being delivered into their system, using the same machines and pumps as the ones we had become used to with him.

We visit the cemetery on the way home, to talk with him. And I just keep asking myself, why I am still here, yet he is not. Why couldn’t he have been saved? Especially when we were told everything was progressing well. That’s just what I can’t get over. So unexpected and heartbreaking.

Love you so very much xxxxx

The harbour today

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Monday 8th June

Although it has been very sunny today, the wind has been blowing from the north, cooling the early summer temperature. The sea has been whipped up, with white horses moving swiftly across the sparkling water.

You would have enjoyed walks around the harbour today, along with the many holidaymakers thronging the streets, pavements and beaches. You may have walked with us for a while, stopping at a café for a drink and cake, but then you would wander off on your own. You enjoyed people watching, or browsing in book stores, or walking on the sand, or listening to conversations. You probably would have been wearing your coat, with the hood up, to keep the wind from your ears.

But now there’s only two of us, and we can only wonder at what you might have done, or where your journeys may have taken you.

It is unbelievably lonely without you. You really don’t know what you have until it’s been taken away from you. Our lives were encompassed with yours. Totally. Everything we did, we did together.

Every morning would start out with the same questions. What are we doing today? Where are we going? What shall we buy? Where are you having coffee?
I really miss you coming in to our bedroom, saying “Mornin'”, and then wanting to know the agenda for the day. That was the way you liked it. You wanted to know the plan, what to expect; you liked a routine. All part of your autism.

And now, every morning is silent. And every morning I am saddened. I miss you terribly. Angel baby xx

Sixty days

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Saturday 6th June

Every single day, without fail, without exception, we have stood at your graveside. Sixty days of waking up, and facing a future without you. Sixty days of sadness, pain and tears. Our lives were intertwined: you needed us, and we needed you.

When we visit, we talk, we tell you what’s going on, we tend the flowers and touch your cross, hoping to feel your presence. Most often an aeroplane or two flies overhead, and we imagine you, off on your travels, having fun in theme parks, swimming pools or shopping malls.

Every day I think what it would be like if you were still here with us. Planning our summer holiday, thinking about which book to buy, or where to go at the weekend.

I miss holding your hand. I miss our morning cuddles. I miss saying goodnight to you. I miss putting out your clothes in the morning. I miss squeezing out the toothpaste for you. I miss having to cut your nails. Little things. That mean so much when I can no longer do them for you.

Thirty years old, with Asperger Syndrome, and then Testicular Cancer. We tried so hard to do the very best for you. To care for you, to fill your life with fun and adventure, to love you unconditionally.

But in the end we couldn’t save you. And sixty days ago we buried you. And it just doesn’t seem right.

Dearest Angel son xxxxx

So much

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Friday 5th June

I love you so much.
I miss you so much.
So much still to do.
You meant so much to so many.

We hugged so much.
We travelled so much.
We laughed so much.
You gave so much pleasure.

We cry so much.
I am in so much pain.
So much we talk of you.
We tried so much to make you better.

So much a part of us.
So much…….
So much……….
We have so much to remember.

xxxx

Just watching the sea

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Thursday 4th June

Having walked around the town this afternoon, we stopped by the wall overlooking the beach. Windbreaks, sunbathers, swimmers, lifeguards, surfers, children; they all added to the colourful background of white sand and deep blue ocean. We sat where you would often stop and watch the ever-changing scenery all around you. Thinking. Daydreaming. Lost in thought.

Were you sitting next to us today? Taking in all the movement, sounds and smells. I wish you had been there, we could have gone for a lemonade or an ice-cream. We could have all walked along the beach together, filling your shoes with sand.

But you’re no longer here.

It’s been twelve weeks.

And

I just miss you.

xxxx

Now what?

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Wednesday 3rd June

“Beautiful Memories

A bouquet of beautiful memories,
Sprayed with a million tears,
Wishing God could have spared you,
If just for a few more years.
We love you, we miss you,
And we are proud to keep
Your dream and vision alive.”

We have been spending the last few mornings giving out raffle prizes to the lucky recipients as they come into the coffee shop at the local supermarket. We are congratulated on the amount of money raised for the testicular cancer charity, Checkemlads, and many have asked when we are holding the next fundraiser, or that we must make it an annual event, as it was so successful.

It’s good because we are raising awareness and money, but so, so sad that it’s all because of you, and your untimely death.

And do you know what? Your oncologist rang me this morning. After eighty three days of silence, since your passing. Our GP had emailed him twice, and twice the reply came back that he would contact the family.
Nothing.
Until this morning.
I have asked for a meeting with him, rather than talk over the phone.
There are still so many unanswered questions.

Visiting your graveside today, we stood in the sunshine and cried.
I know seeing the oncologist won’t bring you back, but he was supposed to be looking after you, curing you, giving you chemotherapy to shrink the tumours.
So what happened?
Why didn’t you make it?
What went wrong?
Will we ever get the answers we want?

My head is full of hurt and anger and negativity.

I love you so dearly.
My heart is broken.

Sleep tight Angel xxxxx

A rainy morning

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Tuesday 2nd June

Although it had been raining when we visited you this morning, the sun was trying it’s hardest to peek through the scudding clouds. The grass was slippery, but your flowers were catching beaded water droplets and sparkling like mini crystals. We spoke to you for quite some time. Chatting away about this and that. Ever hopeful that you know we are close by and thinking of you constantly.

Later on in the day I went to a gemstone shop to change a honey-amber ring your brother had bought for my birthday, (it was a little bit too small), and looking around on the shelves, I saw a beautiful opalite, carved Angel. It has a milky opalescence, with flashes of blue and gold, depending upon how the light catches it. I bought it for you; your guardian angel.

Loving you and missing you so very much, every day and every night.

My dearest sweet, angel child xxxx

Poem by Leo Marks

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Monday 1st June

I read out this poem at the end of your eulogy in the church. I love its simplicity and the way the words flow: I have memorised it, and use it as a calming exercise when I need to work on my breathing. It is a statement of great love and devotion.

Written by Leo Marks in memory of his girlfriend who had been killed in a plane crash, and then used by a French resistance agent as her personal cipher code during the second world war, it has been used time and again at weddings and funerals alike.

Whether I speak the words out loud, or say them silently in my head, I see your face. Your happy, smiling, carefree face. I try to get to the end without shedding a tear. And that is so hard as your passing has left such a huge void in our lives. We miss you. Plain and simple. The pain never ends.

The Life That I Have

The life that I have
Is all that I have
And the life that I have is yours

The love that I have
Of the life that I have
Is yours and yours and yours.

A sleep I shall have
A rest I shall have
Yet death will be but a pause

For the peace of my years
In the long green grass
Will be yours and yours and yours.

Leo Marks

Missing you so very much.
Love you to the moon and back.
And all the world.
xxxx