Date for surgery

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Tuesday 22nd October

My surgeon’s secretary telephones to offer me a choice.

I could have surgery next week, with a consultant I don’t know, or wait until November 12th and have him carry out the groin dissection.

I chose to go with the surgeon who operated on me before. I have enormous faith and confidence in him. His secretary mentioned that the consultant had said this would probably be the decision I would make.

Have I done the right thing in waiting for another couple of weeks? I do hope so. But I think I am an impatient patient.

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.

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!

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.

Dermatology Check-up

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Friday 4th October

Every four months I will need to attend a routine check-up with my consultant dermatologist. Stripped to underwear, she checks the whole of my body for any strange or odd looking moles. None found today, thank goodness.

Next, she feels the lymph node/glands in my neck, my armpits, my tummy and then my groin. She is looking for hard little lumps she could roll through her fingers. None found today, thank goodness.

A further appointment is made for the end of January 2014.

Phone calls

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Wednesday 2nd October

My mobile phone rings whilst I am out this morning; the Macmillan nurse would like to talk to me when I am at home, later on this afternoon. Why? Should I ignore her call? What does she want?

So, how am I doing? how am I feeling? how am I bearing up? Fine, fine, and fine. I’m not ready to share my thoughts at all.

So, you have an appointment with the dermatologist on Friday, for your 4-month check-up. Yes, I know this.

And a CT Scan has been arranged for Monday. Yes, I know that, too.

The results from the scan will decide whether surgery will go ahead. Really?? I didn’t know that. The consultant told me on Monday that he is away for a couple of weeks, but he will get me on his theatre list, hopefully by the end of October, when he will carry out the groin dissection. He even asked for my preference of surgeons ~ himself, or his colleague in Plymouth.

We are also going to test your Braf gene mutation, to see if it is positive. Your original biopsy is being sent to The Royal Marsden in London. Oh?? I certainly didn’t know that. The results will inform my eligibility for any future drug trials.

Well, much to ponder and process.

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.

Three Things

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Tuesday 24th September

So, three things affect me today; rollercoaster doesn’t come close to describing my feelings.

First: The postman brings me a letter from Exeter hospital, bringing forward my appointment with the surgeon who carried out the SLNB, by one week. Is this a good thing? Do they have my results? What will he tell me? I am worried. I am scared. My mind works overtime, wondering.

Second: When the telephone rings in the afternoon, I am surprised to hear the voice of the Macmillan nurse whom I dislike. She has rung “to touch base”. I don’t know, but I have this paranoid image of her, sitting at a desk, clutching my results, having just discussed my case at the MDT meeting. I can almost feel her willing me to ask about the results. I don’t. I want to be face to face with someone, and that someone to be my surgeon. I was very much upset when she gave me the original diagnosis of malignant melanoma over the telephone. I thought it was very insensitive and certainly unprofessional. My consultant had not been best pleased at all. Anyway, that call shook me up. I hadn’t heard from her for weeks, and then up she pops.

Three: The doorbell rings as I’m slicing up peppers to throw into the wok ~ we’re having a stir fry. Standing at the front door is a lovely colleague from work, holding a beautiful bunch of roses for me. I’m sorry, but I become tearful: chopping onions, or feeling blessed that people care?

My GP Calls

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Thursday 19th September

My GP telephones me just before I am about to put dinner on the table!

He wants to know how I am, how I am coping, whether the pain and swelling are getting me down, and whether I am sleeping properly. He is genuinely concerned, and is sorry for all I am going through.

We discuss my return to work, and he is adamant that I must wait until at least I’ve had my appointment with the plastic surgeon in Exeter, on 4th October. In fact he says he will write a sick note for eight weeks, taking me into November. However, if I’m up to it, I can return to work sooner. He also agrees to prescribe me some sleeping pills.

Maybe at last I can sleep through the night without waking up only to stare at the dark ceiling, thinking dark thoughts about this dark disease.