Apr14

(Delayed) month 15 clinical drugs trial

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Tuesday 14th April

Off to Exeter hospital today for a battery of tests that I should have had done last month.

I have Stage 3c malignant melanoma, the deadliest form of skin cancer.

A mole on my left foot began causing problems just over two years ago, so I had it removed, complete with skin graft. Following a sentinel node biopsy, I learnt that cancerous cells had spread to my lymph nodes at the top of my leg, so I had a left groin dissection in November 2013, leaving me with lymphoedema in that leg, but wearing a support stocking does help tremendously, although it does look ghastly.

For all of last year I was on the double-blind Combi-Ad clinical drugs trial, by GSK. An adjuvant therapy combining Dabrafenib and Trametinib. Monthly hospital visits, with scans, ECG, heart Echo, eye exams, dermatology, haematology and oncology appointments.

Now that I’ve completed the “drugs” part, I’m being monitored every three months for the next two years, then six-monthly for two more years after that. Today I start with dermatology, then blood and obs ~ my blood pressure was a bit high ~ then a CT scan, and finally a visit to the oncologist.

I did find the day very draining, as our elder son would most often come to the hospital with us, and knew the nurses there very well. So it was quite an emotional time, explaining all that had happened. Really quite rubbish to be truthful. Especially since the last five months or so, we have been totally focused on him, and the testicular cancer attacking his body.

Plus, going through the scan, all I could think of was my son, and how I wish his scan had shown a problem that could/should have been spotted or fixed.

The oncologist had a quick glance at my scan images, and all looks good, apart from maybe a slightly swollen thyroid gland. But I will have to wait for the senior radiographer’s report and results from the blood tests. But he didn’t seem unduly worried.

We drove home mostly in silence. Deep in thought. Thinking. If only….. What if…… Why……

We did stop by the cemetery though, to talk with our son, to let him know how I’d got on today. I know that sounds strange, but we find it comforting, and actually necessary to visit each day. To water the flowers, to touch the simple wooden cross, as if somehow we’re connecting with him.

It really doesn’t seem right. I just wish he was back here with us. Why did his treatment fail him? Will we ever get an answer to that question? Will we be told exactly what went wrong?

We have too many unanswered questions going round and round in our heads. Why, why, why?

Apr13

I cried again today

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Monday 13th April

I cried for you before I got up out of bed this morning. The hurt in my throat and chest seems to be there each day as I wake. I cried when we met two people on our walk into town, who spoke about you, and gave their condolences. I cried when I went to the bank and cancelled my direct debits into your account ~ your ‘pocket money’. I cried when I bought your brother a birthday card, knowing you will never receive one ever again. I cried some more when we visited your graveside to water the flowers and talk to you this afternoon.

No one really knows the depth of grief we are feeling at the moment. Our thirty year old autistic son, diagnosed with testicular cancer, was our companion. He didn’t go off and make his own way in the world, meet a girl, make her his wife, or have children. He depended on us totally. And we did everything for him, with him, based around him: he was our life. He was there, with us, always. Fun, cheeky, surprising, caring, chatty, loving.

Our lives have been changed forever. An emptiness is there, that nothing it seems, can fill. We will go on, because I’m sure he would want that, but our hearts are broken.

Nothing, absolutely nothing in this world prepares you for the unbelievable sense of loss and grief that comes when you lose your child. Parents should never, ever have to bury their child. His younger brother should not have to bear the pain of losing his sibling. There is no time limit for grief. It remains with us all, in different ways, forever.

Our son is gone, but until the last breath we take, he lives on in our hearts. His spirit is with us. The memories we have are wonderful, and we will treasure those. It’s all that we can do.

Apr12

Reminders

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Sunday 12th April

All around us, we are reminded of you. Yes, your photographs are everywhere, your books and DVD’s neatly lined up, the many, many sympathy cards along the shelves in the lounge, (and no, I don’t know when I’ll take them down). To your shoes and slippers, your coat at the bottom of the stairs, your toothbrush in the bathroom, and your dressing gown still lying on our bed.

You are everywhere, but nowhere.

Again we light candles in the church, then tend to your grave.

We talk to you, but there is no answer.

How we wish you were here with us now. Our hearts are broken.

We just don’t know what to do.

 

Apr11

Flowers

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Saturday 11th April

We bring you a bouquet of yellow roses and white carnations today. I place them amongst the sunflowers.

The letters spelling out your name in white chrysanthemums still look beautiful, and we water them, and talk to you, and tell you we love you and miss you so, so much.

We said we wouldn’t cry today, but we did.

Looking at your Auntie’s wreath, she explains her choices for you in ‘The Language of Flowers’:

Alstroemeria ~ Devotion

Cypress ~ Mourning

Eucalyptus ~ Protection

Lungwort ~ You are my life

Moss ~ Maternal love

Myrtle ~ Love

Rosemary ~ Remembrance

White carnation ~ Pure love.

Night night lovely boy xxxx

Apr10

Is that you?

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Friday 10th April

We still cry at your graveside today.

We cannot believe that you have left us.

It is so hard to understand that we will never, ever see you again in this life.

We see a goldfinch, flitting from gravestone to gravestone, singing it’s heart out. Is that you? Letting us know that your spirit is close by. The bright yellow feathers matching the sunflowers atop your grave. Is that you?

Apr9

Four weeks

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Thursday 9th April

Four weeks ago today our darling son gained his angel wings. Unexpectedly. Without warning. We still haven’t come to terms with it.

Diagnosed with testicular cancer back in October, he battled his way through chemotherapy. Only his body wasn’t strong enough to take it. He was beaten at the final hurdle.

We visited his graveside again today, as we said we would. It doesn’t get any easier at all. We love him so very much, and miss his voice, his smile, his everything.

We sow some seeds along the top of the grave, from flowers in our garden. We try to think of the good times, but our grief is so immense, it just seems so futile. He was such a great companion to have around. Life seems so very empty

In the afternoon, having told ourselves we need some exercise, we go for a walk in the sunshine. Holidaymakers are on the beach, in the cafes and shops. We head for the church, to sit quietly, collect our thoughts, and light candles for our beloved Angel.

Life seems so unfair right now.

Apr8

The Interment

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Wednesday 8th April

Today we bury our elder son.

Husband and I, younger son and girlfriend, sister, her husband and their daughter. A small family group to pay our very last respects to our dear boy.

The hearse pulls away a little after 10:30am, the coffin adorned with yellow sunflowers, He Man’s sword on a bed of white chrysanthemums, wreaths, sprays and bouquets. And spelt out alongside is his name. F R A N K.

We follow in a black limousine. We take a very slow drive through the narrow, and quite busy streets of the town. Along the harbour front with the sea sparkling, the sun shining in a perfect blue sky. He would walk for hours along the wharf. Then we turn up through more winding roads, and past the surfing beach, where he would wander along the sand. And then up the hill where we live. Countless times he would have walked up and down these roads, so we had to take him on one last journey. Unbelievably heartbreaking to think he will no longer be able to do this

The cemetery is only a couple of miles out of town, and we drive slowly along in silence. Pulling in, the songbirds are a joy to hear, the pink hibiscus are flowering along the driveway, and everything seems peaceful and still. We draw to a stop, get out of the car, and watch the coffin being taken up to the grave. White ribbon straps are attached, and as it is slowly lowered the church Father says prayers and commends our son to eternal life. We are all sobbing. We cast some soil on to the top of the coffin, then a sunflower each, that our younger son has brought along. We each say something, and tell Frank we love him so much.

We ask that the white flowered pillow with He Man’s sword be placed on top of the coffin. After about twenty minutes it is time to leave. We say our tearful goodbyes and head home.

Later on that afternoon though, my husband and I drive out to the cemetery, and see the mound where our son is buried. The flowers look beautiful, and cover the grave completely. There is a simple wooden cross with our son’s name on, and the flower letters spread along the length of where he lays. His final resting place. We break down. We cry and cry. We just cannot believe what has happened. He was so close to kicking this disease. Why did our amazing son have to be so cruelly taken from us?

It is something to which we will never have an answer.

We spend a few quiet moments talking, crying, tending to the flowers. And then it’s time to leave. We tell him we’ll be back tomorrow.

Apr7

The Church Service

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Tuesday 7th April

The saddest day of our lives.

The service for our darling son was attended by many and the choir sang beautifully. The hymns I had chosen were ‘All things bright and beautiful’, ‘The Lord’s my Shepherd’ and ‘Abide with me’.

The coffin was covered with a mass of yellow sunflowers, and a pillow of white chrysanthemums with HeMan’s sword on top. My sister, brother and mum had had the letters F R A N K spelt out using white flowers, linked together with sunflowers too. They looked amazing.

My brother spoke about our son, recalling family memories, and the church Father spoke words written by the care home managers where our son spent time over the last few years.

Somehow I found the strength to deliver the eulogy. I needed to do this for our son. No one else could have spoken my words of love for him. It was down to me, and he would have expected it as such.

Following the service I was told I was very brave and strong, that the words were inspirational and uplifting. But I just did what I had to do. And somehow I stood in front of the congregation and talked about our wonderful boy. I wanted to thank everyone in our town who had ever nodded, smiled, said ‘hello’ or had conversations with him.

Only those parents and families who have a child with special needs will know how difficult life can be for them. To fight for their education, to help them fit in, to give them as normal a life as possible. Our son felt safe in the town despite his innocence and vulnerability.

Following the service, we had a get together with friends and family, then as it was such a wonderfully sunny day, we accompanied our younger son and a group of his friends to walk along the harbour front, to sit outside and talk and reminisce and reflect.

Later, coming home to a quiet, empty house fills me with such sadness and a massive sense of loss. He was our whole life. But his memories will last a lifetime, and we will certainly keep those alive.

Apr6

The last time

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Monday 6th April

Today is the last chance we have to visit you in the Chapel of Rest. It is so painful to see you lying there. You have all you need to take to heaven. The dolphin and teddy can play with the angels with you, you can read your books and watch your videos.

No more chemotherapy, no more drugs, no more blood transfusions. Your pain has gone. You are now cancer free.

But I just wish you were here to spend a lot more time with us. We weren’t ready for you to go. We had so much more planned when you got better.

It hurts us so much that we will never hear your voice or your laugh, we will not be able to have cuddles or to hold your hand. You will have to do this with the angels.

We are left with so many happy memories of you, and you will forever be in our hearts and thoughts. Everywhere we go, you will be with us.

Darling child. We love you so, so much xxx

Apr5

Our Easter Angel

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Sunday 5th April

We visit our Easter Angel this morning. So cold, eyes shut, no smiles, lying still. Are you peacefully playing up in heaven? We do hope so. Again we let you know our love for you is boundless, unconditional, everlasting. We miss you even more today, than we did yesterday. We miss every single thing about you. You were so innocent and childlike.

You will be forever young. Your spirit is all around us. We lit candles in the church for you again.

I spent such a long time this evening putting together a slideshow of photographs. So many good times, happy memories, amazing adventures.

We cried a lot today.