Tag Archives: melanoma

Nov21

Time to get out of bed!!

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Thursday 21st November

It really is about time I got out of bed and had a proper clean up!!

This thought was prompted after I’d asked my husband to pull off the tight compression stockings I had been wearing for the last ten days, and I saw his nose screw up. Oh, do my feet smell? Hmmm, only a little bit!!

Right that’s it, make an effort, stand in the bath tub, and have a damp flannel scrub-up. I can’t yet have a proper shower, as the wound hasn’t healed, and the tube sticks out of a hole in my thigh ~ must guard against infections and the like. Still, I think I now smell better than I did!

I then lean over the bath precariously and wash my hair with the shower head ~ it is so, so good to have clean, shiny hair again.

My lovely husband then rubs coconut oil on my feet and legs as they had become very dry beneath those white, nylon stockings!! (I can’t bend down to reach my feet ~ plus it’s so good to have a mini foot massage!!)

I then put on a really loose pair of warm pajamas, and come downstairs; the first time since arriving home on Monday.

I phone my mum to tell her that I’ve cleaned up, am sort of dressed, and ready to accept visitors ~ if she wants to see me she’d better come round soon, or else I may go back to bed!! We have about half an hour chatting, drinking tea and cuddles, then my husband takes her off to the supermarket.

I make some toast, potter about in the kitchen, fold some laundry and do some online banking. As I have been standing for much longer than during the last three days, my drain bag fills up by 75mls in four hours ~ whoops, I do need to rest, and elevate my leg. I spend the rest of the afternoon on the sofa, and am visited by my son, his girlfriend and their lovely little puppy.

They bring me a beautiful silver necklace with a green amethyst, so unusual and so thoughtful.

I need to go to bed soon and stretch out my leg so that it is horizontal. All this getting up and moving about leaves me quite tired. But I am thankful for a great day with spent with family.

Nov20

Rain and Drain

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Wednesday 20th November

Another typically Cornish November day: a howling gale, driving rain and chilly temperatures. This is not very conducive to me getting out of bed!

So, I’ve been under the duvet all day. The medication makes me all dopey and dozey.

I had thought about making an appointment at the surgery to see the practise nurse to change my drain bag. It had started to come away, and lose its stickiness, but as it was so cold, so wet, so windy, (plus I didn’t want to get dressed with a plastic bag dangling down, between my knees, to go and wait in a germ ridden place), I didn’t go.

So I changed the bag myself!!

Ooohhhhh.

I had to peel the gel adhesive away from my skin, thread the plastic tube out, and then put the new sterile bag on.

Just hope it’s secured in the right place.

Seems ok.

My husband helped, and gave support.

I cried when I’d finished. I felt all hot and shaky.

Bleurrgghh.

I can feel the top end of the tube right up at the very top of my leg.

I’ll be so pleased when it’s finally pulled out, and I don’t have to go through this any more!

Plooooooppppp.

Ha.

60mls in the last twenty four hours, so it is becoming less.

My husband went to the supermarket this morning, and whilst having a coffee in Costa, the little, grey-haired old lady that comes and chats to us, asked about me.

She then came back a few minutes later with a beautiful bunch of coral roses for me. Ahhhh, bless.

And the wind still blows the rain off the sea against the bedroom windows. How I wish it would blow all my troubles away.

Nov19

A day spent in bed

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Tuesday 19th November

One week ago today I had a left groin dissection to remove all the lymph nodes and surrounding tissue as a preventative measure to stop the spread of melanoma.

So, today has been a ‘duvet’ day; warm and snuggly under the covers, whilst the wind and rain beat against the windows. I feel much more comfortable in a reclining position anyway ~ well that’s my excuse, and I’m sticking to it!

I have been thinking, and reading a lot about the trial I have been offered. I have so many questions/outcomes/what-ifs/then-what’s going through my head at the moment, as far as it is concerned.

I thought at first, when the Macmillan nurse told me about it, ‘Yes, I’ll do it’.

Then I started to read about the side effects, travelling for hospital visits, scans, and the fact that I might not even be taking the drugs, so I was like ‘No chance’.

Having read the comments from other people who are also on the trial (via the Facebook group), I now feel I may be swinging back to ‘Maybe I should give it a go’.

I really was rather worried about all the side effects, but it would make sense, that those listed apply to Stage 4 patients, as they haven’t tested ‘fitter’ Stage 3 ones yet!

I am beginning to feel more positive about putting myself forward for the trial now, even if you just get the increased monitoring, without the drugs, that must be a bonus.

I think I need to speak with my family doctor, Macmillan nurses and an oncologist as soon as I am able. But the more I think about it and read the information, I am tending towards saying ‘yes’ to the trial.

The Macmillan nurse did say not to make a decision straightaway, as I am still recovering from surgery, am perhaps a little emotional, wait until I have the results from the groin dissection, and talk to as many informed people as possible. She said ultimately the decision must be mine, I must be selfish, and to think purely about myself, my life and family, to do what is best for me.

Still doesn’t make it any easier!!

So, I go to sleep tonight knowing that I have support from so many people, and they will help me in the decision I must make.

Nov18

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.

Nov17

Post-op ~ Day five

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Sunday 17th November

Just woken from my morning sleep!! Zzzzzz.
Wash and teeth soon after six.
Brekkie at eight.
Snooze at ten.
Mmmmmm.
Dressing to be re-done tomorrow.
Doctor’s rounds.
Party bag of drugs.
Discharge letter.
Then escape.
Complete with dangly bag and drain.
Then back in a week to the plastics clinic to see my surgeon for a review, possible drain removal, and maybe results.
A lovely quiet afternoon, spent reading the Sunday papers, dozing and drinking tea, was then followed by a ward change.
We were hoping for a peaceful night’s sleep! Last night was very disturbed, with a very disoriented lady up and down, lights on and off, sleep-talking.
Myself and another patient have now been moved to a much noisier ward, right by the reception, phones going, buzzers beeping, conversations chatting, bright lights glaring.
Oh well, give me the drugs and I’ll be flying my kite, high, high above the clouds!
Nov16

Post-op ~ Day four

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Saturday 16th November

Well, the doctor on rounds this morning looked like he was off to the car boot sale, not to review patients on the plastics ward! Jeans, sweatshirt and trainers; casual in the extreme!!

Anyway, it looks like Monday is the Discharge Day combined with a change of dressing. Yay!!

Not sure yet when the drain will be removed, we’ll have to wait for the fluid to amount to less than 30 mls in twenty-four hours.

I don’t mind waiting a couple more days, am in the best place, and still feeling quite painful ~ drugs administered every four hours dull the soreness.

Had my ‘plumbing’ sorted out this afternoon, with another 60mls drained away. Looks very ungainly when I visit the bathroom ~ there is this view of a bloody plastic bag, swinging between my thighs!!

Making a fabulous fashion statement ~ I don’t think so!!

Nov15

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.

Nov14

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!!

Nov13

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.
Nov12

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.