Tag Archives: melanoma

Waiting, wondering, worrying

Standard

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 #2

Standard

Monday 28th October

Well, here we are again, one week on, is there anything else to talk about?

Actually, yes. Having been given the date for my upcoming surgery, I am both relieved and yet apprehensive. Scared stiff more like. Two weeks today we shall be staying overnight in an hotel, ready to go to the hospital at 7:30am the next morning.

Two weeks of waiting, and then the operation. My head is filled with all sorts of “What ifs?” Hard to explain, but the dark thoughts are there, nonetheless.

So, what am I doing about this state of mind? Trying to stay positive as much as possible; getting lots of fresh air; eating fruit and vegetables; working through some breathing and meditation exercises; taking cinnamon, turmeric, resveratrol and lycopene supplements;  cooking with organic, virgin coconut oil; and a teaspoon of Manuka honey every morning.

I’m hoping all these little things add up to a lot; enough to make a significant difference. I don’t want to be classed as having mild to moderate depression and anxiety. I have to do something about it. I’m not going to get on that downward spiral. I want to live my life.

Date for surgery

Standard

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

Standard

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

Standard

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.

Appointment details for September!

Standard

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.

Eye ointment for my foot!

Standard

Wednesday July 17th

So this is probably the last time I visit the practice nurse at the surgery for a check up on my foot. Plus, I needed a couple of things on prescription to take away on holiday with me. When I had my appointment with the consultant on Monday, he suggested that as the skin graft wasn’t fully healed between my toes, the best remedy was antibiotic eye ointment! Eyes and toes, hey? Almost at the opposite ends of one’s body! But, if it does the trick, I’ll not argue 🙂 One prescription for the cream was duly issued.

The nurse was really pleased I had been given the all clear to fly and go away for six weeks; yay! We talked about gentle exercise on the plane and the wearing of compression stockings ~ very fetching!

Later on in the afternoon I received a telephone call from the secretary to the consultant I saw on Monday. A quick catch up to explain the next course of events, and to check our holiday dates, so that the surgery can be fitted around those times. I will need a pre-op consult with a nurse, plus some blood tests, then I’ll be all set for the operation a few days later; a general anaesthetic, but I should be able to go home that same day ~ hopefully! She sounded really friendly, and very reassuring, and wished us well for a great holiday. She took my email address to make sure that I was kept up to date with details of appointments and hospital visits.

I can now relax for the rest of the summer, and enjoy our time away. Yes, I know I’ll be returning to more surgery, worrying about results and yet more time off work, but for now: “Here comes the summer!”

Holiday ~ Go or No?

Standard

Monday 15th July

Plans for our whole summer hinge on today’s appointment . . . .

Just arrived home after meeting with a super, consultant plastic surgeon at Exeter. I had been dreading this appointment, wondering what he was going to say. He explained that he is going to carry out the staging procedure by injecting the radioactive dye into the site of my malignant melanoma, on the top of my foot, at 9am and in the afternoon, carry out the sentinel lymph node biopsy to see which lymph node this has drained to. If all goes well, I could be going home that same day. And then wait for the results.
(He commented that my scar was healing nicely, but my toes were still a bit swollen; looking like pork chipolatas!)

My big question to him was “When!!!!??? When would you plan on carrying out the surgery?”

He looked at my notes and saw that his colleague had written that we had booked our summer holiday. “No problem, we’ll wait until you get back ~ I do have a space tomorrow, but you wouldn’t be able to fly next week!”

Oh my goodness, I had come to this appointment fearing the worst. Lots of emotions flying around my head!

He explained that he has operated on pregnant women, to remove the melanoma, and then three or even six months later, after the baby is born, carried out the sentinel lymph node biopsy.
He could see no problem with waiting until September, and reassured us that I wasn’t being foolhardy or selfish in wanting to go on holiday. If there are any microscopic cells in the nodes, or in transit, they’re not going to get markedly worse in the time we’re away. Plus, as my CT scan had come back clear, he was really positive, and said we should go and have a good time!
Feeling much better, for the moment!

I have been using the internet to find out as much as I can about this disease, and the proposed next course of events for me.

Much of the information states that the sentinel lymph node biopsy should be carried out at the time of the wider local excision, so that the route to the draining lymph nodes can be tracked accurately.

There is a school of thought though, that thinks maybe some of the microscopic cells are still in transit, and so, could be missed.

I had the MM removed on 2.5.13, and then the WLE on 7.5.13. (6mm, Stage 2b). The CT scan was on 5.6.13. My consultant said he would get me on his theatre list for September. He said it probably wouldn’t be that much sooner anyway, (unless I had it done tomorrow), as August was looking busy for him, and he was probably off to Florida for a couple of weeks too.

I’m being looked after by the NHS, but two of the three consultants (male), I’ve seen have private practices, and I certainly feel as if I’m being treated as a private patient. I feel really lucky, and totally reassured.

Fat toes and gashed elbows

Standard

Monday 8th June

My weekly visit to the practice nurse saw us discussing swollen, fat toes and over-granulation of the skin. Hmmm, doesn’t sound too pretty! My fourth and fifth toe remain puffy and podgy, and are hypersensitive to touch. In between the toes, where it is warm, moist, and constantly under pressure, the friction of rubbing together, and the graft not taking, the skin remains red raw, and the scar tissue keeps on growing (the over-granulation). Bleurrgghh. The nurse says if it wasn’t for the skin graft, she would probably use silver nitrate to get rid of the excessive scar tissue. But, we’ll wait and see what the consultant says on Monday.

I now seem to have two differently sized feet; my left foot appears to be two sizes bigger than my right! Ha ha, not! When can I wear dainty, summer sandals? High heels?

Anyway, about an hour after returning from the surgery, my mum pops round on her way to the beach. She remembers that she came to see me to ask for a plaster for her elbow, as she had fallen up her steps, coming back from the town. It’s only a graze, she says. Upon closer inspection, I realise it is a rather nasty, deep looking gash. Off we go, back down to the surgery for my second visit of the day, to see the same nurse. Lots of local anaesthetic, three stitches, a SteriStrip, gauze dressing, padding, bandage and an arm stocking, and mum is ready to be driven back to our house, by my husband, for a therapeutic cup of tea. No beach today!

The long-awaited letter arrives

Standard

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 . . . . .