Category Archives: chemotherapy

Summer rain

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Tuesday 14th July

Here we are, half way through July, and it’s grey, misty and wet again. Not that it should bother me too much now, as I can’t really stay out in the sun like I used to. Having melanoma makes you think twice, cover up more, use high factor sunscreen, and wince when you see sunburnt holidaymakers. But it would be pleasant if it was a little warmer and acted a bit more like summer.

You wouldn’t have minded though, on with the raincoat, hood up, and off you’d go, traipsing around the town. When you came back home, you’d strip off, leaving your wet clothes in a pile on the floor, and go and put your dressing gown on. If you then decided to go out again, you’d go and find another set of dry clothes. You really did fill up the laundry basket quickly!

When we were on holiday, we used to have torrential downpours in South Carolina and Florida. But it was warm rain, and you knew it wouldn’t last all day. You used to like the thunderstorms too, watching the lightning from the safety of the hotel room or balcony, and listening to the cracks of thunder overhead. You certainly weren’t scared.

The only time you didn’t like the rain was when it stopped the rides at the theme parks: then it was a real nuisance. You’d probably go and find an indoor show or movie, and wait for the storm to pass.

We’ve been through a few hurricanes as well, whilst on my father’s yacht. The first ever time we all sailed with him, around Bermuda, the island was hit, and we had to tie up alongside, in Riddles Bay. I remember it being very noisy, with the wind howling and the rigging rattling, whilst we all huddled below decks, but you were safe with us and not frightened at all.

A number of hurricanes have come ashore over the years whilst we’ve been in South Carolina too, but we took everything in our stride. Rain, winds and floods wouldn’t spoil our holidays. One year the prolonged downpours brought an alligator into the marina, and you were fascinated by the creature. My father took us once to his favourite golf course, where one could always be seen very close to the fairway, where it lived in one of the lakes. And talking about alligators: one year when we were staying on Hilton Head Island, a six foot alligator found its way into the hotel pool. Critter management was called to remove and return it to its own habitat. You found that quite funny!

When we come to visit you this morning it is drizzling, not like a normal summer’s day at all. The sky is overcast, there are no vapour trails of planes taking people off on their vacations, and rain drips down from the branches of trees. But it’s not cold, quite muggy in fact, and a little steamy.

You’d be quite excited by now, with your summer holiday imminent. You’d be walking around with the itinerary I would have printed out. A week and a half, and we’d be on our way to another American adventure. But not this year. We just can’t go without you. Things are too raw at the moment. I know you’re with us, in our hearts, and you always will be, but we cannot make the trip this year.

Have fun in the theme park of angels, my darling son.
Laugh, run around, and enjoy yourself.
We think of you so much.
And we miss you more than words can say.

xxxx

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Stitches and strolls

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Monday 13th July

This morning the stitches came out of my left arm, where I had a suspect mole removed almost two weeks ago. It was a painless and simple procedure carried out by a nurse at the surgery; I’m now left with a 2cm scar, and a bit of a dent in my skin. Ho hum, I have to be patient and wait sixteen days for the results.

The afternoon was spent with your brother’s girlfriend, as she’s still not well enough to return to work. We did have a little stroll along the harbour front, trying to dodge the many holidaymakers, and we stopped to have a cappuccino to watch the world go by.

You liked people watching, too. You were especially fascinated by young children, or crying babies. You wanted to see how parents would interact with their children.

I wish you were still here, walking across the wharf with us. We could stop for an ice cream tub, then go and look in the bookshops, or watch the surfers in the sea. It’s just not the same. I wake up thinking of you, and am still thinking of you when I go to bed.

Know we love you with all our hearts.
We miss you more every day.
xxx

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Sunday visits

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Sunday 12th July

Our Sundays now have a comfortable routine: we collect my mum from the care home, meet up with my sister for coffee and lunch, then maybe go on somewhere different for afternoon tea.

Today we were interrupted by your brother’s girlfriend who was phoning from hospital. She was allowed to go home, having stayed overnight, following a consultation with a doctor. Your brother was working, so we told her to ring us if she needed anything.

Having said goodbyes to my mum and sister we drive to the hospital. Your brother’s girlfriend was very pleased to see us, no operation had been necessary, and she very much wanted to go home.

As we were passing the cemetery, we asked if she minded if we stopped to visit you. It was grey and misty, with no one else about. She really liked your horse, and the white, spreading petunias.

I know it seems strange perhaps, that we do come and see you every day, but it was good to bring someone else along this afternoon, to visit you.

We all miss you so, so much.
We talk about you often.
You will never, ever be forgotten.
Love you so very much.
xxxxx

Twinkle twinkle

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Saturday 11th July

“Star light, star bright
First star I see tonight.
I wish I may, I wish I might
Have the wish I wish tonight.”

And you are my shining star.
Up there, somewhere, looking down.

But I so wish you were down here,
With us, looking up at the sky.

We went to the hospital this evening (where you spent so many nights having your chemotherapy treatment), to visit your brother’s girlfriend. She has been having tummy pains, and had been admitted for overnight observation, with the possibility of an operation tomorrow. Your brother is looking after her. Hopefully she will be home soon.

Walking down the long corridors in the hospital brought back so many painful memories and reminders. I felt quite uncomfortable and sad. I was glad to leave, to tell the truth.

Shine brightly.
Soar high.
My starlight Angel xxx

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It’s not right

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Friday 10th July

The stitches in my arm were not ready to come out today, so the nurse just cleaned the scar and gave me a new dressing. I must say it looks pretty tidy, with no redness or inflammation. It’s been nine days since I had a suspect mole removed and am awaiting the results. So it’s back to the surgery first thing Monday morning.

Having sat for almost an hour in the waiting room, I was now looking forward to a cappuccino, followed by a bit of shopping. Well, buying bouquets for you ~ no roses though, as the man in front of us gathered every single bunch. We then drive to the cemetery, armed with a new collection of flowers.

We try to look after you, and your resting place now that you’ve gone. We come to talk with you, to share our thoughts, and we try not to be sad. We cry because you’re no longer here, but we must remember all the happy adventures we had together.

We did so try to look after you when you were here with us. We tried to make everything right for you, to give you the best possible life.

Your autism meant allowances had to be made for your sometimes challenging behaviour, we had to have huge amounts of patience, but the love and affection we shared was priceless. For thirty years you were our beloved child.

Having arranged your flowers, I stood back, reflecting, feeling sad, thinking “It’s not right. This is just not right.” And the tears flow.

It’s been a hundred and twenty days since you gained your Angel wings, and the pain in my heart is unrelenting.

Love you forever, dearest son in heaven.
xxx

Cognitive behaviour therapy #3

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Thursday 9th July

Having missed Session 2 last week due to having minor surgery to remove a mole from my arm, I’m all ready for this next instalment of Cognitive Behaviour Therapy: managing your actions.

So, what did we learn today, hey?
Stressed people think more anxiously about their life.
Stressed people avoid difficult situations, and may use safety behaviours as a way of coping.
Depressed people tend to withdraw from normal activities.
Stressed people tend to be on the lookout for threats.
Depressed people can feel isolated and lack confidence.

Okey dokey, I think I know all that to be true. So, what’s to do about it?

1. Work out exactly what the problem is. Take on the problems one at a time. Break down each problem into smaller chunks. Putting this into practice will mean a greater sense of control.

2. Facing the fear can test the reality of your feelings. Think about “What is the worst thing that can happen?” Brainstorm as many options or outcomes as possible, then weigh up the pros and cons. Work out a step by step plan, put it into action, then review the outcome.

3. Removing safety behaviours to confront fears. Some feel they need something to protect against threats or that which cannot be controlled. Working out what these are, or the ‘props’ that are used, is the first step. (Having ready-made excuses, medication in one’s pocket, having a drink before going out).
Thinking about how these safety behaviours help or hinder, predict what would happen if they were not used.
Again, work out a step by step plan, put it into action and then review the situation. Start to remove as many safety behaviours as possible.

Well, I’m not sure how much of that applies to me, a lot of it was common sense.

And then we moved on to 20 Tips for Coping with Stress: things to consider
1. Deal with problems on the spot.
2. Nurture strong, confiding relationships.
3. Slow down.
4. Break problems up.
5. Avoid Must’s and Should’s.
6. Coping with ruts.
7. Take one thing at a time.
8. Look and sound relaxed.
9. Learn from past experience.
10. Don’t accept other people’s targets.
11. Healthy eating.
12. Stop smoking.
13. Situations outside your control.
14. Build relaxation into your life.
15. Prioritise.
16. Do the worst thing first.
17. Don’t try to be Superman or Wonderwoman.
18. Confide in others.
19. Other people’s shoes.
20. Keep up a routine.

So there we have it, in a nutshell.
Much to think about, lots I already put into practice.
But it’s not going to lift me out of this depressive hole I find myself in at present. That will take time, an awful lot of time. There is no predetermined exit point to actually stepping out into the light at the end of the tunnel. It will happen at some time, and I know I have to believe in that, otherwise what is the point? I do know I won’t feel like this forever. My depression is the result of the enormous grief I feel over the unexpected loss of my son. I’m allowed to feel like this, for the moment. But not always. I’ve got to tell myself that it will get better.

Thinking of you, my sweetest Angel in heaven xxxx

A present from America

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Wednesday 8th July

“He’ll be with you
in the places you go,
in the things you do…
in your heart.”

Returning from my weekly lymphoedema appointment, I picked up the post from the floor by the back door. Our lovely friends in America, whom we have known since 1994, sent a card of condolence, and inside was a wonderful silver heart necklace for me. So kind, thoughtful and generous.

Our friends live in South Carolina, and are gracious hosts to us, whenever we make our annual visit. Dinner parties have almost always ended with the most marvellous pecan pie, with an extra one having been made for us to enjoy the following day.

I know these people will really miss you being around, when we do eventually return to South Carolina. They loved you, and your accent, and were completely understanding of your sometimes challenging behaviour.

Right now we have no summer holiday plans. Maybe we’ll give America a miss this summer, I just don’t know. It doesn’t seem right at the moment to book our holiday without you. For twenty odd years our planning was centred around you two boys. When your brother decided it was no longer cool to go on holiday with mum and dad, it was just the three of us. And what fun we had, and the miles we covered in our hire car. South Carolina, through Georgia down to the tip of the Florida Keys, not forgetting an extended stay in Orlando so that you could enjoy the theme parks.

Will we follow the same road again? I’m not sure we will. You allowed us to have fun, year on year, acting like big kids. Being a child-like thirty year old, we would spend most of our Orlando time in the theme parks, going on each and every one of the rides, watching parades and fireworks, playing in the water parks, riding on airboats, watching movies at the IMAX, playing crazy golf, buying books and DVD’s from Barnes and Noble or Books a Million, or eating pancakes and maple syrup. You let us be a huge part of your extended childhood, and for that we are so grateful, and yet left so sad now.

There are so many memories and reminders of you, everywhere.

One day, I’m sure, we will go back to Orlando, but not just yet. It’s too soon.

We miss you more each day.
Love you forever.
Sweet dreams Angel son xxxx

Feeling sad

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Tuesday 7th July

Shake it off. Shake it off.
I need to be more like Taylor.

I really wish I could shake off the dark cloud of depression that is following me around at the moment.

Becoming upset at the slightest thing, thought, sound, image or smell.

And three times today we spoke with different people who expressed their condolences. They said they missed seeing you walking around, that everyone looked out for you, to make sure you were safe. You were known by so many.

And then I got upset again when we visited your brother and his girlfriend after they had both finished work. We chatted over tea, about this and that, and I was just sad. Don’t know what brought it on. Probably thinking about you, which I do a lot.

I just miss you so very much.
Sometimes it really hits me hard, when I realise I won’t hear your voice again, nor see your smiling face, and we won’t be making plans together for the future.

Life doesn’t seem fair or very easy at the moment.

So Miss Swift, I need some help, so that I can feel better about myself and ‘Shake it off’.

Love you and miss you.
My sweet Angel son.
xxxx

Another check-up

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Monday 6th July

Here we go again ~ another 250 mile round trip to the hospital where I am taking part in a clinical trial using a combination of drugs in the adjuvant treatment of stage 3 malignant melanoma.

Today I see the most wonderful plastic surgeon who carried out a left groin dissection in November 2013, to remove lymph nodes at the top of my leg. I have a 20cm scar, which has faded almost to nothing, and a couple of smaller scars where the drain tube exited further down my thigh. He was pleased with the healing, and asked about the groovy support stocking and lymphoedema that I now have. I said it was a small price to pay if he had removed all the cancerous cells.

The drive home was unusually slow, with lots of holiday traffic, caravans, lorries, tractors and wide loads on the dual carriageway. We took almost an hour longer than our normal two hours. Plus the rain didn’t help matters.

We stopped in at the cemetery. No one else was about; it was a bit grey and wet. We talked to you as we always do, whilst tidying up the flowers. It still doesn’t seem real. It doesn’t seem right or fair, that my cancer treatment is working for me, and yet your treatment failed you. Why? Why? Why?

Missing you so much today.
Love you forever.
Precious Angel.
xxxx

Swimming

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Sunday 5th June

Funny
Reliable
Adventurous
Naughty
Kind

You were all those things and more, our darling FRANK.

We were speaking about you this afternoon, and I don’t know how or why, but the conversation was about how you used to swim. Whether in the sea or in swimming pools you would really enjoy being under the water, swimming like a dolphin. (Whilst we were talking about you, sitting outside in the sunshine, a little robin appeared ~ was that you, come to listen?)

You first learnt to swim when we lived in Australia, and we would go down to the beach, most afternoons in the summer, after school. The bay was very sheltered, and quite shallow.

You enjoyed snorkelling too, and had a terrific time at the Barrier Reef, seeing the wonderful colours of the amazing sea life. From reef sharks to parrot fish, coral to giant clams, it was like living in a wildlife documentary, the water was so clear.

You also went snorkelling in Tobago, where we had a trip out in Frank’s Glass Bottom Boat. You thought the gaily painted vessel was named after you, and why not? Here we followed large angel fish, turtles, and huge manta rays. You would dive down, kicking your legs, and swim along underwater.

Bermuda and the Virgin Islands were other destinations where we took our snorkelling gear. You loved playing about in the water, jumping off the boat, swimming to shore, wearing your mask and fins.

You and your brother also had formal swimming lessons, and collected a multitude of proficiency badges for life saving, and various distances. Because many of our summer holidays were spent sailing with my father, on his boat, we wanted you both to be able to take care of yourselves in the sea.

And a jolly good little swimmer you were, too.
You had so much fun.

Love you sweetheart xxxx