Category Archives: Thoughts

Check up with the Macmillan nurse

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Monday 30th December

Today I have an appointment with the lovely Macmillan nurse in Truro. We talk for almost an hour. She checks the lump at the top of my leg, and is happy that it hasn’t become any worse. She says it is no longer infected nor cellulitic, but slowly repairing itself, the blood clots breaking down and being absorbed.

My actual scar is healing well, and looks neat and tidy. She says I should be pleased with this.

We talk further about what to look out for in the future: lumps, bumps and discoloration, mostly on or around the primary mole removal site on my foot, but I must also check my left leg quite scrupulously.

She wishes me well as I begin the medical tests later this week, and tells me to get in touch if I have any questions, queries, or just want a chat.

When I arrive home there is yet another appointment for me in Exeter! On Tuesday. With the Skin Lesion consultant. Mole mapping, (and removal ~ be prepared for a four and a half hour visit, if we have to cut out any nurglies ~ no the letter didn’t say that, but it may as well!!). So that makes trips to Exeter on Thursday, Friday, Monday and now Tuesday. Great planning!! Still, I knew I was going to be very, very closely monitored.

A wonderful Christmas break

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Friday 27th December

This Christmas we decided to take a break in Center Parcs, Longleat Forest. Myself, husband, elder son, younger son, girlfriend, puppy, and my mum travelled on Monday in two cars. The weather was absolutely atrocious ~ rain, wind, flooding, traffic jams ~ but we finally made it by early afternoon.

We had two ‘Woodland Lodges’; very comfortable, with welcoming log fires. Having unpacked and settled in, the three youngest went off to the swimming pool for some fun in the dark and the rain! The pool is kept at 31℃, and has an outdoor section of flumes and rapids, all lit up with Christmas lights.

Christmas Eve, and we are exploring the Village Square, complete with ‘singing reindeer’, ‘snow covered’ Christmas trees, sparkly twinkling lights everywhere, and a pen full of real reindeer with marvellous antlers. I am brought down to earth when my mobile phone goes off, and I have a call from the trials nurse! Really, Christmas Eve!! Oh well. She informs me that I have two appointments lined up in Exeter on the 2nd and 3rd of January. The first for a CT scan, and the other for an Echo Cardiogram. She apologised that they were on two consecutive days, but apparently different departments don’t ‘talk’ to one another!! Hmmmm.

Anyway, having digested her news and thought about the logistics of two trips to Exeter in two days, four of us are off on a morning horse-drawn carriage ride. The horse has sleigh bells, the ‘driver’ is decked out like Santa, ably assisted by a cheerful ‘elf’. The weather today is perfect ~ crisp with beautiful blue skies.

I am able to visit the various areas of the park using the landtrain, which is wonderfully decked out with holly and baubles. By mid-afternoon I am ready to return to our lodge with my mum, whilst the rest spend an hour ten pin bowling. My leg becomes rather swollen unless I am able to sit and elevate it.

(It is now exactly six weeks following my surgery, and I still have to have a plastic drain bag stuck to my leg. It really is becoming quite tedious now. I have a hard lump below my scar, that remains red and bruised. I continue to take antibiotics. I do wish things would settle down and let me behave normally.)

Christmas Day, and Santa has visited overnight, leaving a vast array of gifts under the tree. We spend the morning unwrapping, whilst the massive turkey cooks slowly in the oven, spreading a delightful aroma throughout. Before we eat, the young ones go out for a walk with the puppy. As we sit in the lounge, looking out of the French windows, we are visited by a deer, who comes down the bramble covered bank, almost onto our patio. A little later a couple of grey squirrels scamper in front of us, and a robin redbreast perches on the barbecue. A delightful array of festive visitors! Soon the turkey, potatoes, broccoli, carrots, stuffing, sausages in bacon, parsnips, gravy and cranberry sauce are all ready! Champagne is poured, and we sit down to a feast. In the afternoon the young ones take the puppy for a walk, whilst I sit on the sofa, watching both the crackling log fire and whatever happens to be on the television.

On Boxing Day the non-cyclists catch the road train to the Plaza and enjoy a warming Starbucks and look around the shops. The four active members of the group then went off to outdoor Archery, leaving my mum and I to people-watch, and enjoy afternoon tea in yet another coffee shop! Younger son and girlfriend then went to collect the puppy from their lodge, handed it over to husband, mum, elder son and I, whilst they enjoyed a couple of hours in the pool. We walked slowly down to the lake, and up the other side to our lodge. It was dark when we arrived, so a couple of logs were thrown on the fire, six baked potatoes put in the oven, and cold turkey, cheeses, pickles, beans, and more Champagne were laid out on the table. The swimmers returned, leftovers eaten, champagne quaffed, and Christmas pudding savoured with spoonfuls of brandy butter. (It was on this day that I decided not to stick the plastic drain bag onto my leg. Very little fluid was draining out, so instead, I used a dressing plaster; much more comfortable and unobtrusive).

Our final morning saw us all clearing up, packing, and loading up the cars. We had to hand the keys back in by 10am. A hearty breakfast was served in one of the Plaza bistros, and then we hit the road for the long drive home.

Our Christmas break had flown by, oh so quickly, but what a wonderful, family time we had.

I sign up!

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Monday 16th December

Just over two hours after leaving home, we are being seen by a lovely trials nurse at the hospital in Exeter.

Today is the day I sign my body over to GlaxoSmithKline.

We are taken to a very comfortable consulting room and the nurse goes through the different tests I will be put through before I get the go ahead to take part in this trial. A complete physical examination. These include CT scans, MRI scans, electrocardiogram, echocardiogram, vital signs, blood tests, eye exam and a pregnancy test!
I need to be ‘randomised’ before February 4th.

These are the details from the trial documentation:

“A Study of the BRAF Inhibitor Dabrafenib in Combination With the MEK Inhibitor Trametinib in the Adjuvant Treatment of High-risk BRAF V600 Mutation-positive Melanoma After Surgical Resection.

This is a two-arm, randomized, double-blind Phase III study of dabrafenib in combination with trametinib versus two placebos in the adjuvant treatment of melanoma after surgical resection. Patients with completely resected, histologically confirmed, BRAF V600E/K mutation-positive, high-risk [Stage IIIa (lymph node metastasis >1 mm), IIIb or IIIc] cutaneous melanoma will be screened for eligibility. Subjects will be randomized to receive either dabrafenib (150 milligram (mg) twice daily [BID]) and trametinib (2 mg once daily [QD]) combination therapy or two placebos for 12 months.

Primary aim: Relapse-free survival (RFS)
Secondary aim: Overall survival (OS) of dabrafenib and trametinib as a combination therapy versus placebo; approximately 5 years;
Distant metastasis-free survival (DMFS) of dabrafenib and trametinib as a combination therapy versus placebo; approximately 32 months;
Freedom from relapse (FFR) of dabrafenib and trametinib as a combination therapy versus placebo; approximately 32 months;
Safety of dabrafenib and trametinib as a combination therapy in the overall study population; approximately 5 years.”

So, this is what I have signed up for.
It really is frightening and scary territory for me.
Having read a lot about this trial, and spoken (via the Internet), to people already on the trial, there seems to be a lot of hope and positivity for it.
Without help and advice from these people I would be walking a lonely minefield of ignorance

From the oncology waiting room, I then move along to the one at surgical outpatients. We have about a forty five minute wait, but are then called to one of the consulting rooms. It is almost five weeks since my plastic surgeon operated on me. The scar is incredibly neat, and healing well. However, I still have the drain bag attached, and my lumpy, red cellulitis is a pain in the neck! Apparently it’s all normal-ish . . . . the drain fluid is a straw colour, a good sign, but the hard, half-grapefruit-sized lump is an unwanted side effect. As I have no lymph nodes on the left hand side, lymphatic fluid has nowhere to drain, so it collects in pockets, and sometimes becomes infected, resulting in cellulitis. Oh joy! I must keep the bag stuck to my leg, and am given a new, two-week dose of broad-spectrum antibiotics.

My surgeon is great, and really easy to talk to about any problems or fears I may have. I am told the swelling will go down eventually, and cosmetically, I will have a very discreet, tidy scar. I am due to see him again in the New Year for a two month review.

Post-op ~ Day six

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Monday 18th November

Today’s the day ~ Discharge-Day!!

Up bright and early for a wash and to drain the drain, (a total of 115mls in the last twenty four hours).

I see one of the consultants who operated on me. All looks well, if a little swollen and numb. He removes the top, waterproof dressing, swiftly and without fuss ~ ooooh! Underneath there is a long line of steri-strips, but no blood, redness or bruising, just tightness and a real sensation of pulling. A little uncomfortable, but understandable.

I now have to wait to be shown how to change the plastic drain bag, to record the amounts, and then to be given my party bag of drugs and the signed discharge letter. Yay, the seventh day of hospitalization, and it should soon come to an end.

Have just been visited by the Macmillan nurse, talking about recovery, relaxing, swellings, expectations, and what happens next. I will need to wait at least a week to have the results from what was removed. Originally, during the Sentinel Lymph Node Biopsy, three nodes were identified, and two removed. The nurse told me that both had melanoma in them ~ one, quite a lot. Hoping and praying the rest that have been cut away are clear. If not, I have the option of the double blind trial, or radiotherapy. But she told me not to dwell on the “What ifs” too much, but to wait until I see my consultant in a week’s time. Think positive. Never, ever give up.

The dressings nurse has now put a new, white, waterproof covering over the wound. She told me that when the consultant had come along on his rounds, with about six others, male and female, they all visibly cringed and screwed up their faces when he pulled the dressing from my skin. Being in  a rather ‘delicate’ place, it’s not surprising!! I wish I had seen their faces ~ all I remember is holding onto the consultant’s arm, and looking at the top of my leg. Oooh, ouchey ouch.

Slowly but surely all the things I need are gathered together. I receive a large bag of medication, along with the discharge letter signed by the consultant, a few spare ‘drain bags’, and lots of instructions for the next few days.

By two o’clock everything is in place, my husband has arrived, and the nurse finds me a wheelchair in which to escape!!

Just over two hours later I’m in my own bed, sipping a lovely hot cup of tea, and so looking forward to a quiet, dark bedroom tonight. I’m sure I’ll sleep well and easily find the land of Nod.

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!

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.

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.

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?