Category Archives: melanoma

Another alien blob

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Thursday 25th February

I travelled to Exeter today with my husband, to have another alien blob, this time removed from my back.
At my previous dermatology appointment, the consultant spotted a suspect basal cell carcinoma.
Sounds dodgy, but not as bad as a melanoma.
The blob that was cut out was quite a sizeable chunk; it was put in a specimen pot, to be sent to the pathology lab.
I had a number of deep stitches, that will dissolve, six surface stitches, steri strips, and finally a bigger dressing.

In twelve days I’ll have the stitches out, and then in three to four weeks, the results. So I’ll have to wait patiently.

We’re staying overnight in the hotel where we would always stay with you.
So many memories….

We wish you were here with us.

It’s Thursday.
Fifty weeks ago today.
Three hundred and fifty days.

I miss you so much.
My darling Angel son.

xxxxxxx

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Hope

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Tuesday 24th November

Hope….  
Sometimes that’s all you have
when you have nothing else.
If you have it, you have everything.”

Today I travel to the hospital where I had the lymphadenectomy, two years ago this month. The lymph nodes at the top of my left leg were removed, as the cancer had spread from the original mole, The Alien Blob, on the top of my left foot. This is my month 24 check up on the Combi-Ad trial, for the adjuvant treatment of stage three malignant melanoma.

My first appointment is with the dermatologist, and she spots a Basal Cell Carcinoma on my lower left back that needs to be removed, so we’ll organise a date for that later. She wanted to do it there and then, but I have other appointments to attend today.
Time to get dressed.

Next I go and see my lovely trials nurse to be weighed, blood pressure, pulse and temperature taken. I also fill in a Quality of Life survey. Hmmmmmm.

From there we head down to x-ray for a CT scan of my thorax, abdomen and pelvis. After a fairly long wait, I’m called through, cannula and contrast inserted, and the imaging starts.
Time to get dressed.

Having finished that delightful experience, I can now have something to eat ~ no food is allowed four hours prior to the scan.

My final stop is with the oncologist, all seems well, and I don’t need to be seen for six months.
Time to get dressed.

So there ends my month 24 visit. Careful monitoring, checking and scans, keeping vigilant, a good deal of crossing fingers, and hope, and then I can breathe easy.

So that was my day, my darling.
We came to see you early this morning, before we set off.
For some reason Dad and I both broke down, and sobbed.
So many thoughts going around our heads.
We miss you so very much.
If only…..
Why…..

It is late afternoon as we set off from the hospital and drive away; we have the light of the full moon to guide us.

Is that you up there, smiling down, wishing us well on our way?

We love you to the moon and back.
And all the world.
Around the stars
And all the planets.

Sweetheart Angel son.
xxxxx

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I know….

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Thursday 12th November

“I know you’re
shining down on
me from heaven”

The twelfth of November……..
It’s eight months today since you gained your Angel wings.

Thursday……..
Thirty five weeks today since that awful evening when you went to sleep and never woke up again.

12.11.2013 ……..
Two years today since I had surgery to remove the cancerous lymph nodes from the top of my left leg.

So many thoughts, feelings and emotions going around and around in my head at the moment.

I’m still here because my surgery and follow-ups have so far been successful.

You’re not here with me as your surgery and treatment was not enough to save you.

And that hurts so much.

But I know you’re shining down on me from heaven.
I just know you are.
And I love you so very much.

Lovely boy.
Precious Angel.
Darling son.
xxxxx

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Month twenty one results

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Monday 14th September

It’s always there, in the background, trying to push forwards, poking at my subconscious, wanting an audience, asking to be heard.
I do try so very hard to not let it rule my thoughts though.
Scanxiety.
The anxious and tedious wait for my CT scan results.

Two weeks ago I had a scan as part of my participation in a clinical trial for the adjuvant treatment of stage three malignant melanoma.
I’m taking part in the Combi-Ad research by GSK, trialing two drugs called trametinib and dabrafenib.

You see, I had a malignant mole on my foot (the Alien Blob), that spread its cancerous cells into my lymphatic system, so I then had to have all the nodes at the top of my leg removed. Not pleasant.

And this evening, and for the next two and a half months, I can breathe a huge sigh of relief.
No Evidence of Disease.
I’m NED.
My trials nurse rang to give me the news this evening.
See you at the end of November for the next round of tests.

I should be relieved.
But I’m thinking of you.
I should feel happy.
But I’m missing you.

Why?
If only?
What if?

I love you so very much.
Sweetheart.
Son.
xxxxx

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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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Results and Therapy

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Thursday 16th July

Preparing to go out this morning I am interrupted by a phone call from my dermatology nurse. She has the results of the lesion excision on my arm, two weeks ago. And the offending alien blob is called a dysplastic naevus. Sounds quite weird, like a synthetic cloud formation. But no, it’s an unusual, benign mole, that looks like melanoma, and you can’t tell if it’s dangerous or not, until it’s sent to the pathology lab. Therefore it must be surgically removed.

So, I’m left with a small scar, and a bit of an indent in my upper arm, but a huge sense of relief, dispelling the anxiety I’ve had for the last fortnight. Melanoma does that to you, the knowledge that it could come back, one day, sneakily, when you’re not expecting it. So, vigilance is the key, combined with regular check-ups. And maybe a few precautionary scars along the way.

This afternoon was #4 of my Cognitive Behaviour Therapy course. The topics covered today were Panic Attacks and Sleep Problems. Woo hoo.

Although I have never had a panic attack, I can relate to some of the typical actions and physical symptoms: foot tapping, sighing, palpitations, sweating, nausea, hot flushes, choking sensations, faintness, upset stomach.

Much of this could be the result of the imbalance of oxygen and carbon dioxide in my body, due to poor breathing and stress. Time to sort out the deep relaxation techniques and diaphragmatic breathing, methinks.

I do, however, have a problem getting to sleep, and then staying asleep. To much to think about, worry about, stress about. I’m restless, tossing, turning, clock watching, can’t switch off. And then I get cross because I cannot fall asleep, and that just makes it worse.

I do try some deep breathing techniques, drink decaffeinated tea, try to walk a reasonable amount every day, no big meals before bedtime, no phone or television in the bedroom, blackout curtains, window slightly open, and sleeping pills.

But the elusive good night’s sleep is eluding me at the moment. My thoughts always return to my son. He is everywhere around me and within me. It’s Thursday again, so it’s eighteen weeks, or one hundred and twenty six days since he gained his angel wings. And we still cry at his graveside.

Thinking of you.
Missing you.
Loving you always.
Forever young.
Darling child xx

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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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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

Removing another alien blob

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Thursday 2nd July

Following my Month 18 check-up for the Combi-Ad clinical trial that I am on for malignant melanoma, a ‘mole’ on my arm was deemed to be suspect. Today we had a 250 mile round trip so that the hospital where I go for treatment could remove it.

The procedure took about thirty minutes to cut away the offending blob, then closed up with both internal and external stitches. I didn’t really feel anything, as I think quite a lot of anaesthetic was injected around the mole to begin with. I have about a two and a half centimetre scar, and will have to wait up to three weeks for the results. I have to have the stitches out in seven to ten days.

So there we have it. Cross fingers for a good outcome.

On the way home we stopped by the cemetery to see you. We talked for a while about what I had had done, in the same hospital where you were born, just over thirty years ago. So many memories came back to us.

I wish you were still here so we could talk with you properly, and to have a cuddle. I do miss those.

Love you forever.
xxxxx

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