Category Archives: melanoma

Jun26

A couple of appointments

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Friday 26th June

This morning I have my annual appointment with a consultant dermatologist. A whole body examination to look for suspect moles ~ none found. (She doesn’t think the one on my arm looks dodgy at all ~ the one I’m due to have removed next week. Hey ho). Plus a check for any swollen glands ~ none of those either.

We talk about our elder son, and she expresses her shock and kind condolences. She remembers how we would talk about him, our travels, and the fun we used to have together. It was difficult to talk, and we felt sad. All over again. Explaining what has happened never gets any easier.

This afternoon I have an appointment with my lymphoedema nurse for a massage session on my left leg. This is most relaxing, and necessary to move the lymph fluid up, and away from my knee and thigh. As I no longer have lymph nodes at the top of my leg, I have these weekly massages to reduce the swelling. I still have to wear a ghastly support stocking though, but it certainly does it’s job. Alluring it is not.

Later in the day, once the rain has stopped, we come to the cemetery. The sky has cleared, and we watch for vapour trails of the aeroplanes overhead, imagining that you are being flown away on holiday. By now you would have been so excited, with only about a month to go before we flew off to America. But not this year. Not yet.

Night night sweetie pie.
Sweet dreams my Angel.
Love you forever.

Jun25

Cognitive Behaviour Therapy

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Thursday 25th June

Instead of sailing across the sparkling, blue ocean, aboard my father’s yacht, I’m floundering in the sea, with the surf breaking over my head, and all I can see are bigger waves on the horizon. What I once had and enjoyed, has now sunk without a trace. Well, that’s what it feels like to me.

Maybe I’m a bit cynical, or I just know what the problem is, but today’s hour and a half course on Stress, left me, well, stressed.

Today I attended the first of four sessions, entitled The Stress Less Course.

I know all the stressful feelings I experience: numbness, guilt, low mood, jealousy, discomfort, insecurity, futility, hopelessness, upset, flat, tearful.

I know the stressful thoughts I experience: worry, cut-off from others, poor concentration, hard to relax, loss of interest, no get up and go.

I know that stress has affected my actions: avoidance of doing things or going places, withdrawal, avoidance of responsibility, eating less.

I know how stress has affected my body: tension, drained, headaches, tiredness, shallow breathing, stomach pains, insomnia,

I know what has caused my stress, that leads then to depression.

My own health has led me to deal with huge changes in my life recently. That I have Stage 3 malignant melanoma is something I think I have accepted since being diagnosed in 2013.

My father passed away in 2009 from Pancreatic Cancer.

My mother is in a Care Home as she has the beginnings of dementia.

My elder son passed away fifteen weeks ago today, diagnosed with Testicular Cancer, having undergone 99 days out of 100 days of chemotherapy treatment.

Oh, and I’ve been signed off work since the day my son died.

So my stress is caused by depression, life problems, anxiety, sleep problems, health problems.

I suppose this afternoon’s session was introductory, and necessitated going through all aspects of stress, anxiety and depression. But I did find it stressful, in that I had to think about what it was that created the stress, and what I should or shouldn’t do about it.

And yes, I know there are coping mechanisms, and things I should be doing to help myself, gently along the way.

I take anti-anxiety medication and sleeping tablets. I don’t smoke, nor do I drink alcohol, but I do like my cappuccinos. I try to exercise by going on a daily walk to increase my normal heart rate. Our diets are improved, and include much fruit, vegetables, fish and chicken. And I find writing about my feelings in this blog, quite therapeutic. I’m also trying to raise awareness and money for a testicular cancer charity, in memory of our son. I also have a goal to focus upon, and that is to climb Mount Snowdon in August.

What I also need to do is learn relaxation techniques, and diaphragmatic deep breathing.

I know I won’t be able to change what has happened, but I would like to feel better about myself, to have my once positive attitude back.

The biggest cause of my feelings of depression is, of course, the death of my son. My grief is, and has been, all-consuming. I don’t think I’ll ever come to terms with it. Our lives have been changed forever. The future that we thought we were headed towards has now disappeared, and we don’t know what path to take.

Maybe this group therapy to come to terms with stress, anxiety and depression will be of use to me.
But it won’t bring my son back.
It won’t change the past.

But I need to be able to swim again, without feeling I’m drowning, being able to hold my head above the waves, and reaching the shore without a struggle. The waves will always continue to break, the tides will rise and fall, I know I can’t stop the inevitable, but I’d like to be able to go with the flow, and enjoy the current as it takes me to somewhere better than where I’m stranded at the moment.

As always, thinking of you, my dearest sweet Angel xxxxx

Jun23

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)

Jun9

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

Apr27

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.

Apr14

(Delayed) month 15 clinical drugs trial

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Tuesday 14th April

Off to Exeter hospital today for a battery of tests that I should have had done last month.

I have Stage 3c malignant melanoma, the deadliest form of skin cancer.

A mole on my left foot began causing problems just over two years ago, so I had it removed, complete with skin graft. Following a sentinel node biopsy, I learnt that cancerous cells had spread to my lymph nodes at the top of my leg, so I had a left groin dissection in November 2013, leaving me with lymphoedema in that leg, but wearing a support stocking does help tremendously, although it does look ghastly.

For all of last year I was on the double-blind Combi-Ad clinical drugs trial, by GSK. An adjuvant therapy combining Dabrafenib and Trametinib. Monthly hospital visits, with scans, ECG, heart Echo, eye exams, dermatology, haematology and oncology appointments.

Now that I’ve completed the “drugs” part, I’m being monitored every three months for the next two years, then six-monthly for two more years after that. Today I start with dermatology, then blood and obs ~ my blood pressure was a bit high ~ then a CT scan, and finally a visit to the oncologist.

I did find the day very draining, as our elder son would most often come to the hospital with us, and knew the nurses there very well. So it was quite an emotional time, explaining all that had happened. Really quite rubbish to be truthful. Especially since the last five months or so, we have been totally focused on him, and the testicular cancer attacking his body.

Plus, going through the scan, all I could think of was my son, and how I wish his scan had shown a problem that could/should have been spotted or fixed.

The oncologist had a quick glance at my scan images, and all looks good, apart from maybe a slightly swollen thyroid gland. But I will have to wait for the senior radiographer’s report and results from the blood tests. But he didn’t seem unduly worried.

We drove home mostly in silence. Deep in thought. Thinking. If only….. What if…… Why……

We did stop by the cemetery though, to talk with our son, to let him know how I’d got on today. I know that sounds strange, but we find it comforting, and actually necessary to visit each day. To water the flowers, to touch the simple wooden cross, as if somehow we’re connecting with him.

It really doesn’t seem right. I just wish he was back here with us. Why did his treatment fail him? Will we ever get an answer to that question? Will we be told exactly what went wrong?

We have too many unanswered questions going round and round in our heads. Why, why, why?

Jan20

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.

Dec22

Private Pity Party

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Monday 22nd December

Today I feel particularly rubbish, and that is most unusual for me. I am sad, a bit tearful, and find it difficult to hold things together.

I am having my own Pity Party. No one is welcome.

We should have been flying to Miami today, to spend two weeks in the Florida Keys, having a fun Christmas and New Year.

We booked the holiday as a sort of celebration, as I had come to the end of twelve months on a clinical drugs trial. Malignant melanoma. The break was to be my little treat.

What we hadn’t foreseen was the dreadful whirlwind of events now overtaking our lives. Within a month, our family life has been completely turned upside down. Testicular cancer. Orchidectomy. Brain tumour. Lung tumours. Chemotherapy. A new vocabulary of symptoms being applied to my elder son. He already has Aspergers, Pierre Robin Syndrome, learning difficulties. Why on earth has all this crap been thrown at him? As if his lot in life is not hard enough already.

Yes, it’s my Private Pity Party. No one is welcome.

Dec15

Month Twelve of my Clinical Trial

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Monday 15th December

Two days of tests for Month Twelve.

So this is it, the end of the ‘Drugs’ part of the clinical drugs trial, for the adjuvant treatment of stage three malignant melanoma.

For twelve months I’ve been taking pills in the morning and again at night. I do so hope they haven’t been a placebo, but the real thing, as supplied by GlaxoSmithKline for the Combi-Ad trial.

We arrive in Exeter mid-morning on the Monday, do a little shopping, then I begin the tests. A CT scan, followed by a cervical smear, finishing with an Echocardiogram.

All is completed by 5pm, whereupon I go to find my husband and son who should be waiting in the cafeteria. But no sign of them there. I phone my husband who tells me that my son has had a ‘funny turn’, and has fainted. They had been making their way down to the car to get some fresh air when my son collapsed. I caught up with them in the corridor: doctors, nurses, upset husband and a frightened son.

My son is sitting in a wheelchair, answering all sorts of questions. My husband is visibly shaken too. We are told we must go to A and E for my son to be checked out. (He is on day fourteen of his chemotherapy, and is attached to a small pump delivering bleomycin through a line in his chest. Testicular cancer with progression of tumours in his brain and lungs).

We sit and wait, with my son lying on a bed, for just over three hours. We think the collapse was due to tiredness and dehydration. Since starting chemo, my son has not enjoyed drinking his usual fruit juice or cold drinks, complaining of a nasty metallic taste in his mouth. All he can manage are infrequent cups of tea and a little water every now and again. It was rather scary for him, and for us.

After observations and an ECG are done, we are allowed to go. Arriving at the hotel just before nine at night, we make our way to the restaurant across the car park. Just before we reach the entrance, son is very sick, so we about turn, return to the hotel, order a delivered takeaway, and finally eat dinner just before 10pm. Truly a long and difficult day.

Tuesday morning, and I’m back at the hospital seeing the dermatologist first. A full body skin check and a feel of lymph nodes. All seems normal, no problems, see you in three months.

We then drive to the main hospital to meet with my trials nurse. Mini meltdown follows when she asks about my son. She has met him on a number of occasions, and has got to know him quite well. Cuddles and kind words of comfort are followed by bloods, temperature, weight and blood pressure checks.

I then move on to a different department for an ECG, somewhere else for an eye exam, finally to the oncologist for a chat and the dreaded rectal exam.

And there we have it, twelve lots of four weekly visits, numerous scans, examinations, pokes, prods, and pill pots has come to an end. What follows now are three monthly checks for the next two years. I know the intense monitoring has been worthwhile. It may have been intrusive, but at least I feel I have been proactive in trying to do something to look after my body.

We drive home from one hospital to yet another, dropping my son off in Truro for his next round of chemotherapy. We stay a while to have him settle in, then my husband drives me home only to turn around and return to the hospital to be with our son.

A very long and draining couple of days. My drugs trial is over, but my son’s chemotherapy journey has just begun.

Sep8

Back to school

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Tuesday 8th September

I haven’t taught since May 2013; fifteen long months ago. I return to work today, and am amazed and heartened by the lovely welcome I receive. So many students stop me and want to talk. They want to know how I am and whether I’ll be teaching them again. Not one ‘saw’ my leg in its compression stocking, nor pointed at it or asked why I was wearing the garment. I had been dreading the first few days, but everyone was so supportive and caring.

My timetable gives me Mondays off, and every other week, Fridays too. It is far less stressful and really quite a relief that I don’t have to stand all day long.