Tag Archives: Musings

Post-op ~ Day three

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Friday 15th November

Today starts much the same as yesterday ~ up soon after six to be wheeled to the loo, quick wash and clean teeth.

Doctor’s rounds at nine, and the registrar speaks about the drain, and the possibility of antibiotics.

I have the tube to the draining bottle cut much shorter, and a collecting plastic bag stuck over the end that is sticking out.

I am supposed to be more mobile, so spend the morning in the bedside chair ~ but everything is most uncomfortable. I last for about a couple of hours, and then I manoeuvre myself back into bed. Sore, stiff, painful, plus I’m worried that by sitting up straight, I will be squashing or pushing the wound in on itself.

After lunch, my husband and son arrive for afternoon visiting. A beautiful bouquet, grapes, magazines and newspapers, plus a whole lot of talking, cuddles and kisses.

After dinner I start a course of antibiotics, take multiple pain killers, have my evening injection, and for the very first time, I walk myself to the bathroom. Yay, I’m now an independent patient; no more pressing the call button and having to wait for the nurse, complete with wheelchair. I can go on my own!

The evening ends with many phone calls and messages.

And breathe, the healing process is well underway.

Post-op ~ Day two

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Thursday 14th November

A much, much better night’s sleep! I think I’m now used to my calf wraps noisily contracting and releasing, plus I got the hang of the morphine pump button, and was better able to control the pain throughout the night.

First thing in the morning I am so happy to clean my teeth and have a wash ~ almost back to feeling normal ~ well, slightly refreshed then!

Doctor’s rounds this morning, and I see the registrar whom I had met on the morning of my surgery. He wants to take away the morphine pump at lunchtime, and have the pain controlled with less strong drugs ~ better for the body really. He also mentioned that my consultant plastic surgeon had suggested I could go home as early as Friday, but that would be dependent on the wound, swelling and drain. With an analogy to wine, he said the fluid collecting in my bottle started off as red wine, then rose and finally white wine. At the moment I’m producing a nice colour of claret! Ha ha.

The blood nurse was my next visitor for another sample ~ however, as I had just pressed the morphine button, she would have to wait five minutes!

Just prior to lunch, a melanoma specialist doctor came for a chat. We spoke about the trial, and ended up by telling me I had a really difficult decision to make. But, I had to be selfish, and make the decision for me, and me alone; not for the purposes of the trial, nor other patients. Just me, and the implications to my life and my family. She also told me not to let the hospital staff push me out early ~ tomorrow is probably too soon to go home!

At visiting time this afternoon, I meet with two lovely people that I ‘know’ from Facebook. A closed group, but within it, so much support, advice and friendliness. We chatted as if we’ve known each other for ages! A superb surprise, and as an added bonus, a box of Maltesers!

Next stop is a terrific Skype session with my husband, son, girlfriend and young puppy. This phone is an absolute godsend, keeping me in touch with so many people around the world.

As I’m finishing up my evening meal, my wonderful plastic surgeon pops in to see how I’m doing. His plan for tomorrow is to make the drain shorter, remove the bottle, and attach a smaller, more manageable plastic bag, that I can monitor myself ~ oh yippee!!

Post-op ~ 24 hours later

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Wednesday 13th November

Well, I didn’t really sleep much last night; what with the calf wraps contracting and buzzing almost every thirty seconds, observations and medication checks hourly, the gentle noise of five other patients on the ward, and the dull throb of pain down my left leg.
Having not been to the loo since 8am on Tuesday morning, I decided, before all the lights were dimmed, to give it a go at 11pm. So many tubes to undo, the drip following along on wheels with the morphine and the oxygen nasal spectacles, plus the drain bottle, filling up with blood. I slowly managed to manoeuvre myself from the bed to the chair. I was wheeled along to the bathroom and lifted onto the toilet by two nurses ~ one male, one female ~ one’s dignity is in very short supply!!
I wake from a doze feeling much better than yesterday, but still very, very sore and swollen ~ making good use of that morphine pump!!! I had two bits of cold, brown toast this morning ~ my first food since Monday afternoon!!! And it tasted surprisingly good!
The ward is lovely and sunny, nice and quiet, and all the staff are fabulous. I’m still wearing the very fetching hospital gown that I put on yesterday morning at 7am ~ all sorts of tubes and drains sticking out of me, means I cannot put on my own (brand, new/bought for the occasion) nightwear!!!! Ho hum.
Throughout the morning various medical teams visit my bedside. Firstly ‘Doctor’s Rounds’ at about nine, where a registrar wants me to give up the morphine pump and make do with paracetamol and ibruprofen ~ hmmmm, I don’t think so!!! Not yet a while anyway.
The next visit was from the blood nurse, who needed a sample to check my red and white cell count, renal function, and whether I have a tendency towards anaemia.
Following that, the Pain Management Nurse visits my bedside. I need to be weaned off the morphine eventually, taking a combination of paracetamol, ibuprofen and tramadol, but there is another syringe of the morphine waiting for me tomorrow!!
The lovely anaesthetist also pops his head around the curtain to see how I’m doing, wanting to know how I have recovered from the general anaesthetic, and how much pain I’m in right now. He is genuinely concerned and interested in my well-being.
Later in the afternoon the Macmillan nurse, whom I met after my SLNB procedure popped round to say hello. She also gave me some information on a drugs trial for Stage 3 melanoma patients. It would be a double blind trial ~ neither you, nor the doctor would know whether you were getting the drugs or the placebo. The drugs involved are Dabrafenib (a BRAF inhibitor) and Trametinib (a MEK inhibitor). Only 55 suitable people from the UK will be chosen to take part in the trial.
I have a couple of weeks to think about putting myself forward, for one year’s worth of COMBi-AD. Yes, no? Do something, do nothing? I need to talk to people, read a lot more about it, weigh up the options. And then there are the side effects ~ pretty serious side effects. I will need to think very carefully about this one.

The Operation

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Tuesday 12th November

I arrived at the hospital at 7am (a little early), but straightaway looked after by a nurse who took my blood pressure (whoa ~ far too high, but understandable!!!!), tested blood sugar, and an ECG.
I then met with the anaesthetist, my two surgeons, three nurses and two medical students ~ blimey what a team!!!! And the students only looked about fourteen.
The anaesthesia went in at 8:48am, and the next thing I knew I was waking in recovery at midday. No shakes or crying this time.
I am now in a ward, hooked up to a morphine pump, have been through three bags of intravenous saline, wearing nasal spectacles delivering oxygen, my legs constantly being moved and vibrated on an electrical pad (guarding against DVT), and have had various pain relief and anti-coagulants delivered. Oh, and the little drain bottle is tucked under the bed.
Haven’t really had a look at my leg closely; all I have is a white dressing over the scar, which can’t be more than 15cm or so, and then the drain poking out, a bit lower down.
Oh, and I’ve also been very sick!! Most unusual for me. But I’m now feeling so much better!! Haven’t eaten anything yet, nor been to the loo. Hmmmm. But my blood pressure has returned to normal. All of the doctors and nurses here are amazing ~ kind, caring and so attentive. The ward is such a calming and friendly environment. If you have to have 110% trust in the people who look after you, then this place ticks all the boxes. If all goes to plan, I should be out Friday/Saturday/Sunday.

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 #2

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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

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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.

Post-op #2 ~ Day Three ~ Some questions

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Monday 20th May

Been awake since half past three this morning. Thinking, pondering, wondering.

Trying to compose some questions for my next visit to the consultant:

Do I actually “have” cancer?

How do you know if I’ve “got” cancer?

Can it be “seen” via CT or MRI scans?

If the removed melanoma/tumour was 6mm, what stage would that indicate?

What is my survival rate? (37% – 50% for five years? Is this true?)

What happens next?

Should I go on holiday in the summer?

Will my travel insurance have to increase?

What else can I do to change my lifestyle for the better?

New drugs or clinical trials? Ipilimumab?  Vemurafenib?

What about cannabis oil?

Loads of orange and green fruit and veggies?