Category Archives: melanoma

Wasn’t expecting that

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Saturday 7th October

  

Well, I wasn’t expecting that……

I had my yearly dermatology appointment today ~ yes I know, I thought it strange for a clinic at the hospital to be open at the weekend, but there we go. Normally these appointments are pretty quick…… “Strip off, and let’s check your skin….All’s good, see you next year…..”

But oh no, it was “Whoops, don’t like the look of that one on your back, we’ll take it off, as a precaution, right here, right now, into theatre you must go……..”.

So I’ve had surgery: local anaesthetic, an excision, with dissolvable deep stitches, and surface stitches which will come out in ten days time.

Wasn’t expecting that…….

But it is good to be looked after, and anything suspicious, or dodgy, then the ‘alien blob’ must be cut out and sent off to be biopsied, with results taking about two weeks.

~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~  ~

Thinking about you, poppet

Fly high my darling

Love you forever

xxxxxx




Month 42

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Tuesday 9th May
  

Alarm goes at o-crack sparrow. I’m up early for my month 42 check-ups at two hospitals in Exeter. First appointment is with the dermatologist at 10:45am ~ thorough skin check of all my various moles, solar lentigo, actinic keratosis, seborrheic keratoses, dysplastic nevus and checking of scars from various surgeries to remove a malignant melanoma and lymph nodes, skin graft, biopsies and a basal cell. All seems ok, apart from some sun damage at the top of my forehead, for which I am given some cream: three days worth, that will take the top layer of skin off, repairing the damage.

My next stop is with my trials nurse ~ I am on the CombiAd trial, for the adjuvant treatment of Stage 3 Metastatic Malignant Melanoma. Bloods, weight, temperature, blood pressure and pulse, all duly taken and noted.

Then it’s on to the delightful CT scan with contrast, of the thorax, abdomen and pelvis. 

My final stop is with my oncologist, who can inform me, tentatively, that he sees nothing suspicious on the scan, but I have to wait for the official radiographer’s report, which will take about ten days.

However, I can finally leave, about 5:00pm, knowing that all seems well ~ with a massive sigh of relief. Breathe………..  

So, that’s it for another six months.

Wishing you were here sweetheart, to share with me. Wishing you had had good news, and were looked after as well as I am being cared for. 

Wishing……

If only…….

In hindsight……..

Why……..

Miss you more than ever

Darling Angel son.

xxxxxx

Month thirty six

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Tuesday 15th November
  

An early morning wake-up, followed by a two hundred mile round-trip for my month thirty six check-up. I have Stage 3 Metastatic Malignant Melanoma, and am on a clinical trial called Combi-Ad for the adjuvant treatment of this type of melanoma. 

A mole on my left foot, the Alien Blob, was removed in May 2013, but found to be cancerous. Following more surgery, a skin graft, then lymph node removal, I signed up to a double-blind trial, confident that I was doing something positive, regarding my health, but also grateful for the very close monitoring that this would entail.

Today I had a full body check with the dermatologist ~ all seems good, and she was happy there were no new ‘trouble spots’.

Then it was a drive to the second hospital where I met with my trials nurse, who didn’t need any blood today, but did check weight, temperature, pulse, blood pressure (a bit too high), oxygen saturation.

We sat around for a while; I drank 500mls of the obligatory water, waiting for my CT scan, and although slightly uncomfortable, the procedure was over in less than ten minutes.

The final appointment of the day was with the oncologist, skin cancer nurse and my trials nurse. So, stripping off for the third time today, I was given another full body check, questions asked, stethoscope used, and told it would probably take two weeks for the scan results to be reported. 

Waiting, waiting, waiting. Scanxiety. Not good. Crossing fingers, and all that……

Anyway, just before we arrived home, we hoped to drive in and see you. We honestly didn’t think the gates would be open, as they are usually closed at dusk. It was now dark, damp and misty, but amazingly, the heavy iron gates were still wide open.

So very quiet and peaceful, and although pitch black in a graveyard, we felt close to you; it felt right, and we told you all about our day.

Love you so much sweetheart.

Wish you were here to talk to.

Moon and back, my darling.

xxxxxx

Month 30

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Tuesday 17th May

Today I went for the Month 30 set of appointments as part of my participation in the clinical trial, Combi-Ad. This is a double-blind, adjuvant treatment, for patients with Stage 3 malignant melanoma.
(Three years ago today I had a second operation to take a wider excision around the offending alien blob on my left foot, having been told the tumour was malignant. I also had a skin graft from my thigh placed over the large wound.)

So, today I started off with a visit to my consultant dermatologist, who confirmed that the minor surgery I had had in February, following my previous visit, had successfully removed a basal cell carcinoma. No more to worry about, as far as that was concerned.
She did though, decide to ‘zap’ a few seborrhoeic keratoses ~ basal cell papillomas ~ sometimes worryingly called ‘senile warts’. Oh dear.
Using a pressurised spray of liquid nitrogen, I was uncomfortable for a few seconds, with a promise that these offending blobs would fall off presently. Happy days.

It was then off to a second hospital for an appointment with my trials nurse for bloods and observations.
I found out here that I should have received notification of a CT scan, but none had been forthcoming. A scan will be carried out at another hospital, closer to home, within the next week or so. A scan is part of the trial protocol, to check for the possibility of spread of tumours, so it is imperative that I have this carried out.
I think over the last thirty months I have had twenty CT scans. So many more than normal, but it is what the trial requires. Radioactive, moi?

My final appointment of the day was with my oncologist. All is good so far, no worries, no problems; we’ll just have to wait upon the results of the scan.

We stopped in at your resting place before we arrived at home, at the end of a long day. We had to check that you were ok: the rain had begun, but your flowers were still looking fresh. We talked with you, letting you know how the day had gone for us. Many times you had accompanied me on my hospital visits, asking questions of the nurses, looking around the newsagents, reading magazines in the waiting rooms.

We miss you so very much.
Love you sweetheart.
Precious Angel son.

xxxxxxx

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Three years ago today. Wider excision of alien blob, plus skin graft, resulting in lower leg encased in plaster.

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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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