Category Archives: Scan

PET scan

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Monday 18th December

  

On the last visit to my oncologist, following a CT scan, a small ‘gnurgly’ was seen on my spleen. It had been mentioned​ a couple of previous times to no consequence, but now the radiographer’s report suggested further investigation was warranted. So, no food since last night, and only water this morning. 

Upon arrival at the unit, just after 1:00pm, form filling was followed by blood sugar testing, which was fine. The technician then went to collect the radioactive trace injection. He returned carrying what looked like an extremely heavy tool box. I thought, ‘Wow, that must be a massive injection!’, but it was merely a huge lead-lined box to protect from the radiation. So then the liquid was pushed into my veins, the technician declared me radioactive ☢️☠️🤢☠️☢️  and I had to wait an hour for the liquid to reach all parts of my body……

The scan itself was fine: the first part was head to knees, taking about fifty minutes, back and forth, stop and start, don’t move…..Then I had to turn around for the second part: knees to toes, which only took twenty minutes. Time to go, and after over three hours in the unit, I was ready. It was now dark outside, the whole afternoon had disappeared through a tunnel…..And now I was starving and very thirsty.

A quick bite to eat and​ a cappuccino, then a drive home in the dark, whereupon I am now drinking copious amounts of water to flush out the radioactive trace. Apparently I must not go near pregnant women or young children for twenty four hours….

Glowing all the wayyyyyy………

Thinking of you my sweetheart, as always.

Beloved Angel son

xxxxxx


Homeward bound, after sunset

Lights of the cars mimicking how I feel…..

And, we came to say hello again

Your solar snowflake looked lovely

End of Year Four

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Tuesday 7th November

   

A drive up to Exeter early this morning, (in the lashing rain, with appointments at two hospitals, for my end of Year Four check ups), had me feeling rather anxious ~ scanxiety setting in……

I was diagnosed with metastatic malignant melanoma in 2013, and am on the Combi-Ad clinical drugs trial. It is an adjuvant therapy, combining two drugs to  (hopefully) stop the further spread of cancer.

First stop dermatology, for a full body skin check, (my unexpected excision a month ago came back as a benign melanocytic naevus). Both the trainee and consultant dermatologist agreed there was nothing unusual or suspicious to be seen. All is fine.

Second stop is to see my cancer trials nurse who takes vials of blood, and checks my blood pressure (a little too high, I think), temperature (ok), weight (too high, I think), and pulse (ok). I then fill out a “Quality of Life” survey. All is (mostly) fine.

Off down the corridor to medical imaging for a CT scan. Ouchy ouch, the radioactive contrast fluid was painful as it entered my vein. Hmmmmm, not too impressed ~ it has never hurt like it did today. Oh well. All is (now) fine.

Final stop is to see my oncologist, for another full body check. He has had a quick look at the scan, and can see nothing alarming, although he says I must wait for the full report from the radiologist. So all is fine. 

Another set of appointments are made for six months hence.

So there we are.

I just wish your treatment had proved successful. I wish that everyday. I am so sorry you had to suffer. I’m so sorry you didn’t make it. I’m so sorry.

My darling Angel son.

Thinking of you.

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

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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On this day last year

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Tuesday 15th September

It was a year ago today that you began a journey on the most awful rollercoaster. You were eventually to be given a diagnosis of testicular cancer, and the horrendous disease would take your life six months later.

You had complained of a pain ‘down there’: following a visit to the GP, you were referred to the hospital, where you spent almost all of this day at the A and E department in Torbay. An ultrasound scan confirmed a mass in your left testicle, and further appointments were made.

Little did we know then how serious this would turn out to be.

Would we have changed anything?
Would we have done things differently?
What could we have done to improve your chances?

In the back of my mind is always the niggling question of why you didn’t have a CT scan sooner. Following the biopsy, and then the removal of the testicle, we were told all was fine, and you came home with us.

It was not until late November it was discovered that you also had tumours in your brain and lungs. This was after we had almost demanded a scan be carried out, as you were having terrible headaches and vomiting.

Should we have insisted upon the CT scan directly after the orchidectomy?

Hindsight……
If only……
I wish……
What if……
Why……

We miss you more than words can say.
We love you so very, very much.
Sending kisses to Heaven.
Beloved Angel 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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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

Month 15 (+1) results ~ normal?

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Monday 27th April

Shortly after ten this morning my trials nurse phones to tell me the results from the tests I had almost two weeks ago. I have malignant melanoma, (stage 3c), and have been on a clinical drugs trial, Combi-Ad, since January 2014. It is an adjuvant treatment combining two drugs, Dabrafenib and Trametinib. It is a double-blind trial, so I don’t know whether I was taking the real thing or a placebo. But the monitoring has been incredibly worthwhile.

Anyway, the drugs part is now over, and I’m seen every three months, for check-ups in dermatology, haematology, oncology, and also have CT scans.

My nurse was happy to report that all is normal, with no evidence of metastatic disease. Plus, my thyroid gland shows normal levels from a blood test, as the oncologist thought it did perhaps look slightly enlarged.

So there we have it. I am normal.

But that’s not what I feel right now. Very far from normal. I wish everything was normal, like it was before. Before we lost our son. I cannot get used to this new normal. I seem to be ‘well’, but that is nothing to celebrate without my son being here. That sounds a little selfish, but I just wish we had had more time with him. We had so many plans, so many more places to visit, so much more fun and laughter to have.

Early afternoon sees us visiting our son’s graveside, to remove some of the old greenery from the floral tributes. We bought a basket of yellow marigolds, that should bring some bright colours for him.

This now, has become our new normal. Standing beside his grave: talking, wishing, tidying, crying, just wanting to be close to him.

I don’t like this new normal at all.