Tag Archives: anxious

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.

Waiting, wondering, worrying

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Tuesday 5th November

One week today, and it’ll be all over: the grisly named operation called Groin Dissection.

Right now, the thoughts going round and round in my head are driving me crazy. My imagination knows no bounds, and is my own worst enemy.

“What ifs”, maybes, outcomes, doom and gloom feelings, worrying wobbles.

Not sure what they will find.
Not sure about my recovery, potential infections and swellings.
Not sure how long I’ll be in hospital.
Not sure about the drain in my leg.
Not sure whether that will be the end of all of this.

Hmmmm, all sounds a bit negative.
Time to get my positive head well and truly screwed on tight.
Time for some deep breathing exercises, smiles, happy dreams, relaxed shoulders, sharing of fears ~ realising others have been through this, and come out on the other side, ready to tackle whatever life has to throw at them next.
Life goes on, I will enjoy everything it has to offer!

Counselling Session #1

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Monday 21st October

Speaking to a stranger, sharing private thoughts, unloading fears, describing crazy feelings. All this and more. I thought I wouldn’t be able to say too much, but I talked, and talked, and talked!

Today was the first in a series of counselling sessions.

It was strangely therapeutic to be in the company of someone I had never met, and yet be able to comfortably explain what I am thinking, feeling; what is scaring me; my doubts, fears and expectations. For almost an hour, I talked about me!

Going through a check-list of statements, I learn I am showing signs of depression and anxiety ~ ha! And my coping mechanism is to hide it from people. I think I do this very well.

CT Scan #2

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Monday 7th October

OK, so my appointment is at 3pm in Penzance. I’ve done this before, I know what to expect, but that doesn’t make it any easier!

When my turn comes, and I’m taken into the room with the big revolving doughnut, I soon realise I’ve got “Miss Trainee Cannula Inserter”. Under the direction of her boss she wraps a tourniquet around my upper right arm . . . . “I hope you’ve got good veins” . . . . . I knew it wasn’t going too well when she suddenly announced “Oh dear, I’ve made a mess”. Blood was dripping down my arm, onto the bed, then to the floor. Not conducive to a calm and stress-free patient. I couldn’t stop shaking and sobbing.

Trying to control my breathing and stopping my body from trembling took quite a lot of effort. Overcoming fears of the unknown, or irrational possibilities was difficult. But the sooner I calmed down, the quicker the procedure could take place, and then I could be out of there.

Back and forth through the doughnut shaped ring I went, breathing in, holding my breath for counts of fifteen. Both CT nurses were safely ensconced behind glass, in their little office. Tasting a weird metallic sensation in my mouth, and feeling a warm rush as the radioactive dye went in, was really strange.

Eventually it was all over, the nurse in charge apologised profusely for her colleague upsetting me and not making a clean job of going into my vein. I was still shaking and sobbing as I left, found my husband in the corridor, and hastily beat a retreat to the coffee shop for a welcome cappuccino.

All over, thank goodness, now I must play the waiting game.

Ever hopeful, always positive, smiling through.

Appointment details for September!

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Friday 19th July

The next steps for me have been have been set in motion.

I received an email this afternoon from my consultant’s secretary.

I have my pre-op on Wednesday 4th September ~ two days after we land from our summer holiday ~ the same date as the first day of term!!! Yikes.

And then I’ll be admitted on the 10th for the sentinel lymph node biopsy procedure.

Scared? Anxious? Relieved? Worried? Frightened?

All of the above!

But, I’m going enjoy my summer vacation!

Have fun, relax, chill, enjoy, laugh, rest, recharge . . . . . .

Worrying won’t make a difference to the dates of the appointments. The decision has been made for me, and I know I’ll be looked after by a great team.

The long-awaited letter arrives

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Friday 5th July

I received a letter this morning from the consultant plastic surgeon in Exeter for an appointment a week Monday. The letter says it will just be an initial consultation, so I will go along with all sorts of questions . . . . the main one being, if it’s not life-threateningly desperate, could he hold off any surgery (a delayed Sentinel lymph node biopsy procedure), until after the summer holiday ~ do you think that’s cheeky or selfish or foolhardy on my part???? We booked our flights to America way back in January, for a five and a half week road trip.

I’ve been thinking so much about the arrival of this letter, that when I did open it, it made me feel a bit sick/scared/worried. It’s the prospect of not knowing what they might find, plus the actual procedure itself.

A number of fellow melanoma-ites have suggested that not many surgeons carry out a SLNB unless it is done at the same time as the original WLE.

Still, needs must, if that’s what the consultant thinks.

I have just over a week to wait . . . . .

Macmillan nurse phone call #3

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Thursday 23rd May

Not really feeling it today; a bit down, depressed, and teary.

Didn’t particularly want to get out of bed. But, having pulled the mask of a cheery, smiling face across my own; time to get moving.

Sometime during the afternoon, the Macmillan nurse calls, informing me of her findings, having spoken to the team in Exeter. Apparently, as a consequence of having the surgery for a wider excision, plus the skin graft, that now prevents me from having the lymph node biopsy. She was very negative, and seemed to be telling me off for having gone ahead with the removal of further skin and tissue, around the site of a large malignant melanoma. I’m sorry, but the sooner this was carried out, with such expediency, by an experienced professional, who had my best interests in mind, then I’m all for it. Telling the nurse that my consultant had indicated I could always have a delayed lymph node biopsy made no difference. All she seemed to want to inform me was that I had scuppered my chances of this type of treatment. Having had the open wound for 15 days, I was incredibly pleased the alien blob, and its surrounds, had been well and truly banished.

Following that phone call I felt extremely confused, upset, and anxious.

Professional? Sensitive? Caring? Thoughtful?

She also informed me I would be receiving an appointment for a CT scan soon, and perhaps the possibility of taking part in clinical trials, involving specialist ultrasound, at the Royal Marsden in London. But by then, I’m afraid I had switched off somewhat.

I just want to be rid of whatever is preventing me from living my life normally.

A phone call from the Macmillan nurse

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On Thursday afternoon, 16th May, the Macmillan nurse phoned whilst I was on the computer doing some school work. She had the results. As far as my back was concerned, the results came back negative, but they would probably err on the side of caution, and carry out a further, wider, deeper excision, at some point.

She then asked me if it was alright to continue talking over the phone about these results. There was something in her voice that told me it wasn’t going to be good news. And it wasn’t. The alien blob from my foot, was indeed a melanoma.

I couldn’t speak, I didn’t know what to say, nodding my head and tightening my fist until my nails dug into my palm.

I should be going to Derriford hospital tomorrow for a wide local excision with skin grafting. But she continued to tell me that I would probably just be going to Plymouth for a chat with my consultant, and then come straight home. It was unlikely that I would have the operation.

Continuing with her outlining of events, she said that the MDT had met the previous Tuesday morning, with my results appearing that same afternoon. It was probable I would be sent to Exeter for further surgery, but not until the team had met this coming Tuesday, and discussed their cases.

I would have a sentinel lymph node biopsy at the same time as the surgery on my foot, along with the skin graft. The biopsy meant injecting a blue, radioactive dye at the site of the wound, and then looking for an offending nodes that had turned blue. These would then be removed in the hope of stopping the spread of the disease. The nearest lymph nodes to my foot were those in my groin.

It was a long phone call, where she did most of the talking. It left me scared, confused, unsure, and made for quite a sleepless night.

What should we do?

Will the operation go ahead?

Will it be worth driving to Plymouth at all?

And what of the melanoma, what were the implications for me?

An appointment with the Macmillan nurse

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Friday 10th May

We drive to our local hospital hoping for answers; but we come away confused and scared.

The results are not yet back from histology for either my back or my foot. The one from my back is being tested again, as it has proven to be inconclusive, and needs a second opinion. The nurse asks if I want her to phone me if she can find out the results. I say I would like to know.

The conversation then turns to looking at possible courses of action. She said the South West is in the forefront of new research, trialling new drugs and managing the disease. She said I would probably have a sentinel lymph node biopsy, to see if anything had spread. By then I think I had switched off, I didn’t want to hear anymore, I just wanted to go home.