Category Archives: Results

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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Month 18 results

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Tuesday 23rd June

Speaking with my melanoma trials nurse this morning, I can report that I am NED ~ no evidence of disease. This follows a large battery of tests that were performed two weeks ago. That should be a good thing, right? No metastasis of the cancer. Everything looks normal, with no change to any internal organs.

I should feel over the moon, happy at least, or a huge relief. No cancer in my body. Hip hop hooray.

On the one hand, yes, of course I do, a huge weight has been lifted off my shoulders. For another three months at least, when I go back, and the scanxiety begins all over again.

I’m trying hard not be negative here. But it’s difficult.

Because on the other hand, I do feel “Yeah, so what?”, shrugs shoulders, curls lip. “Whatever”.

You see, melanoma is a sneaky disease, it can lay quiet for months, even years, before unexpectedly exploding back on the scene. It’s not just a case of cut it out, it’s gone, you’re good to go.

I already know that the cancerous cells spread from the mole on my toe, through my lymphatic system, up to the nodes at the top of my leg. This follows a number of surgeries and a skin graft. Despite being told the nodes were encapsulated, there is always that niggling bit of doubt, quietly knocking on the door, at the back of my mind. It’s a bit of a deadly lottery really.

No, melanoma needs much vigilance: perhaps a change in diet and lifestyle, sun awareness and proper sunscreen use. And very careful monitoring of your skin.

So yes, I am feeling positive that I am NED, but I won’t let my guard down. Gone are the days of beach tanning to a leathery brown, my diet now contains lots of fruit and vegetables, and I try to exercise daily by walking, despite the lymphoedema in my leg. Oh, and I use sunscreen every day, too.

(Thinking of my darling boy in heaven, whose cancer was diagnosed too late.
I so wish things had been different.
Love you, love you, love you 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.

My Month 12 Results

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Tuesday 20th January

I receive a letter in the post today from my oncologist.

“I am pleased to inform you that the CT scan done on 15 December shows no evidence of new disease and no focal suspicious lesion in the bone. There are a few nodules which have been seen on previous scans, but they remain the same and have not grown or changed since.

I hope you find this reassuring.”

Oh yes! I can breathe easily for another three months. One less problem to worry about, a weight has been lifted from my shoulders. Sometimes I forget about ‘me’, and my issues; there are so many other things going on that I have to deal with, so reading this news is truly wonderful.

Plastic Surgeon

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Monday 7th July

Almost eight months following my left groin dissection I have an appointment with my plastic surgeon to check progress. He is terrific, never rushed, and always willing to answer questions.

He is very pleased with the way the scar has healed, leaving just a neat silvery line in the crease  at the top of my leg.

He feels along the scar line for any new swelling ~ there is none!

He mentions that the skin graft on my foot could be made to look a little more pleasing ~ this was carried out by his colleague, using a split-thickness skin graft, and has been left looking a bit lumpy and scarred. I think it best to decline his offer at this moment in time. I don’t want to be out of action, limping and hobbling for a number of weeks ~ I think I can put up with a gnarly looking foot!

We make another appointment for a year’s time!

I had previously sought out my trials nurse to enquire as to the results of last week’s CT scan. I didn’t know whether the results had come through yet. They had…..

All is clear. Nothing has changed. Worry not.

We leave the hospital feeling massively relieved and wonderfully happy. Thank goodness.

Results ~ three month review

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Tuesday 8th April

After the two days of tests at Exeter hospital, we decided to take a break and drive on to London for a few days to visit relatives and partake in a bit of sightseeing and retail therapy. There’s nothing like  a bit of distraction to take one’s mind off all the hospital tests, especially the CT scan. This is the one that really scares me, for it is this that may show progression of the disease.

Following a lovely four day break, we are on our way home, when my trials nurse phones me. She has the paperwork from the scan. My oncologist has yet to see it, but one of the senior registrars has given her the go ahead to tell me that all is fine. It shows “nothing of any medical significance”. My heart skips a beat, I feel so relieved and tension leaves my shoulders. Everything is good for another three months!

 

A really long day!

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Monday 2nd December

Have just returned from a long day trip to Exeter.

I had an appointment at the dressings clinic, to see whether the drain in my leg was ready to be removed ~ no, not yet, as I’m still losing too much fluid. So plastic bag changed, and the site cleaned up.

Hmmm, another week of dangly bag between knees!

There was also a Macmillan nurse there who had a printout of my results, following the groin dissection three weeks ago: of the four further nodes removed, only one more contained melanoma, and that was ‘encapsulated’, no spread to the surrounding tissue which had also been removed. Three out of six, in total.

Does that sound good, or maybe OK?

She then spoke for a bit about the Combi-Ad drugs trial, I have been offered.

My wonderful plastic surgeon, who was conducting his own clinic, then popped his head round the corner, to say hello and check the wound, scar, red bruising, hot feeling, wooden thigh, that I now seem to possess! All seems normal, he’s happy with the progress being made, and will now refer me on to an oncologist, where I will find out more about the trial.

So, all in all, not a wonderful day, but not dreadful either.

Stage 3a ~ B-raf positive

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Tuesday 15th October

Today I learn from the Macmillan nurse that my biopsy has returned from the Royal Marsden, showing my gene mutation to be B-raf positive. This means I will be eligible for a drug trial on Vemurafenib. Not necessary right now, but the information is there, ready to be acted upon quickly.

I also find out my cancer is now Stage 3a. Meaning??  Well, firstly, the melanoma cells have now spread to the lymph nodes in my groin ~ at the top of my left leg. Secondly, the survival statistics now become reduced ~ a 57% – 73% of surviving the next five years, and to be here in ten years time, 50% – 67% chance.

Not the best of news, but I have enormous faith and confidence with the healthcare professionals looking after me, and the advances being made with drug therapy to treat melanoma is truly outstanding.

Positive all the way.

Unexpected Appointment

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Friday 11th October

Yesterday I had a phone call from the hospital in Plymouth, to tell me that my first plastic surgeon wanted to see me today, for an appointment in Truro.

I had a very worrying night’s sleep, thinking all sorts of crazy thoughts, not least of which was that my Monday’s scan results had come through extra quick……

I was however, very reassured by the visit. Firstly, the consultant wanted to know that everything was moving quickly, in the right direction for me. He had been in receipt of a number of emails from different healthcare professionals concerning me. He was worried that I was having too many appointments with different people at different hospitals, and sometimes receiving conflicting advice. He said as far as he is concerned I am under the medical care of his colleague in Exeter, and anyone else who wants to stick their nose in can “p*ss off”. He is great ~ a ‘top bloke’. He said he is a traditionalist, and fears that Cornwall can get precious about its patients. All he wants is the best, quickest outcome for me, and that is to have the groin dissection in a couple of weeks, carried out in Exeter.

Secondly, he was concerned that I should have another CT Scan; when I told him I had had that done on Monday, he went to check for the results on the system ~ ALL CLEAR!

I have not walked away from an appointment feeling so relieved!

SLNB Results

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Monday 30th September

OK, so this wasn’t the news I was hoping for. The melanoma has in fact spread to the lymph nodes in my groin. I found this out when I visited the hospital in Exeter. My consultant was great, very caring and concerned, and we talked for ages. I also spoke with another Macmillan nurse who took me through the next steps.

Within a month I am due to have a groin dissection, when all the lymph nodes will be removed. It’s a much bigger operation, usually in hospital for up to a week, and left with a drain in my leg for up to two weeks. A minimum of two months without driving.

Crap, crap, crap news.

But I know the consultant will look after me, and it’s just something I have to go through.

I also have an appointment on Friday in Camborne/Redruth, to see the consultant dermatologist for a check-up ~ she was the one who removed the mole from my back, right at the very beginning (no evidence of disease). And on Monday I have another CT scan at West Cornwall.

Not feeling very brave at the moment.