Monthly Archives: May 2013

May31

Last week of May

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Two re-dressings of the foot, and the removal of the one over the skin graft donor site ~ long and protracted, but the skin on my thigh doesn’t look too bad!

Had a quick telephone conversation with the second Macmillan nurse who appears much more friendly, sensitive and ‘glass half full’ than the other doom and gloom, telling-off one! It was good to let her know my thoughts and concerns, and not be made to feel insignificant or guilty, or to be spoken to in a dismissive or condescending fashion!

May28

My birthday

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Tuesday 28th May

My birthday ~ a lovely, long, leisurely lunch spent with family; wonderful!

A clear, sunny day, eating marvellous seafood, watching the sea, beach and blue sky.

Arrive by taxi and hobble to the table on crutches. Everyone is so kind and attentive.

I love my family.

May26

It’s because you like the sun

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Sunday 26th May

Well, this month has really flown by, but I don’t seem to have been part of it at all! Two major operations, visits to hospitals and surgeries, three weeks in bed, getting used to using crutches, and pain; oh my goodness the pain upon trying to reach the bathroom!

All this does now seem to be easing, as I become part of a waiting game.

Waiting for the next course of action. And thinking,  and pondering, and wondering.

Why?

At work, when I first mentioned I may have a dodgy mole on my foot, one colleague’s response was: “Oh, but you do like the sun don’t you?”

Another acquaintance told me today: “You know what it is, don’t you ~ the sun”

And a relative knowingly informed me “No more sunbathing for you, you’ll have to cover up now’

Do you know, I don’t particularly want to hear your condescending claptrap. If that’s all you can say, then I don’t want to listen.

I am not stupid, nor irresponsible. I happen to like being outdoors when it is sunny; I love going to the beach, whether swimming, snorkeling, sailing, or just feeling the warmth on my skin. Sunny days are feel-good days, happy days, ones filled with smiles and laughter. And I do protect my skin, especially on my face, using SPF 15 through the winter, and 30 to 50 in the summer. Our time spent sitting on the beach on our summer holidays lasts for a maximum of a couple of hours (our son would prefer us to be elsewhere ~ shopping, at a theme park, eating).

I do not burn, nor blister. I am careful.

So yes, what is happening to me is probably the result of being out in the sun, but I do try my best to protect myself.

Sometimes life can be a little unfair.

May24

Down at the surgery again

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Friday 24th May

It’s exactly one week since I had the second operation. I’m off to the surgery to see my wonderful practice nurse for a clean-up and re-dressing. The dent on the top of foot doesn’t shock me so much today, and it is quite painfree having all the gauze, lint, bandages, compression stocking removed and reapplied.

I hobble out clutching a party sized box of strong painkillers; an absolute necessity first thing in the morning, when I lower my foot to the  floor, and attempt to begin my day with a spring in my step!

May23

Macmillan nurse phone call #3

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Thursday 23rd May

Not really feeling it today; a bit down, depressed, and teary.

Didn’t particularly want to get out of bed. But, having pulled the mask of a cheery, smiling face across my own; time to get moving.

Sometime during the afternoon, the Macmillan nurse calls, informing me of her findings, having spoken to the team in Exeter. Apparently, as a consequence of having the surgery for a wider excision, plus the skin graft, that now prevents me from having the lymph node biopsy. She was very negative, and seemed to be telling me off for having gone ahead with the removal of further skin and tissue, around the site of a large malignant melanoma. I’m sorry, but the sooner this was carried out, with such expediency, by an experienced professional, who had my best interests in mind, then I’m all for it. Telling the nurse that my consultant had indicated I could always have a delayed lymph node biopsy made no difference. All she seemed to want to inform me was that I had scuppered my chances of this type of treatment. Having had the open wound for 15 days, I was incredibly pleased the alien blob, and its surrounds, had been well and truly banished.

Following that phone call I felt extremely confused, upset, and anxious.

Professional? Sensitive? Caring? Thoughtful?

She also informed me I would be receiving an appointment for a CT scan soon, and perhaps the possibility of taking part in clinical trials, involving specialist ultrasound, at the Royal Marsden in London. But by then, I’m afraid I had switched off somewhat.

I just want to be rid of whatever is preventing me from living my life normally.

May22

The day the cast came off

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Wednesday 22nd May

Again we arrive at the hospital in Plymouth way to early, but it gives us a chance to locate the correct ward, and on the way, requisition a wheel chair, to speed up my movement!

Handbag on lap, crutches clenched between my knees; this is the new, smooth way to travel!

The ‘Peel and Reveal’ session was carried out very expertly, and almost painfree, by a wonderful nurse. What my eyes were presented with at the completion was amazingly fascinating, and yet shockingly gruesome! The size of the excision was unbelievable; there was a great dented crater, my fourth toe looked as though it was standing on a stalk, and where was the skin graft skin? I think I was expecting normal flesh colour, but maybe a bit pink and puckered! The split skin graft had been turned into a mesh and stretched over the wound, with a number of stitches to keep it in place. Wow!

May21

Macmillan nurse phones again

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Tuesday 21st May, late afternoon

I’m on my way to the loo, hopping and shuffling, when the phone rings. The nurse wants to touch base, and see how Friday went with my trip to the hospital, what happened, what was said.

When I told her that the operation had gone ahead, I’d had a wider excision and skin graft, she was really taken aback. Oh, but, but, but . . . My case had only been discussed that morning, in the weekly meeting, by the Multi Disciplinary Team. They/she assumed I hadn’t had the operation, that I had just gone to Plymouth for a quick chat, and then come home.

I felt I was being told off for having the skin graft. I recounted to the nurse that my consultant said I could always have a delayed sentinel lymph node biopsy at that hospital, as they carry out the procedure there. No they don’t, she snapped. And then ended the conversation saying she had a number of calls to make further enquiries.

I felt as if I had done something wrong. It was quite upsetting.

It feels l am in a power struggle; my treatment action plan seems to be part of a game. Who is better qualified? Who has the greater clinical knowledge? I trust my consultant, and will listen to his expertise and advice. I really want my glass to be half full, rather than half empty. I think that there should be greater communication between the two hospitals. I would like continuity of care from supportive professionals. It’s not too much to ask?

May20

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?

May17

Operation two

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It’s Friday 17th May, and the alarm goes off at 4:10am. We are out of the house and on the way to Plymouth a little after five. The sunrise is beautiful; colouring the sky in pink, yellow and orange.

Due to the lack of traffic on the roads, we arrive at the hospital car park at 6:35am, far too early! The appointment was set at seven thirty. Twiddles thumbs.

Upon arrival  I didn’t know what to expect. I half imagined we’d be back on the road soon, after a quick chat. But it became clear that surgery was going ahead, and I was first in the queue. I spoke with nurses, the skin graft registrar, a fabulously jolly anaesthetist, and of course the wonderful plastic surgeon.

He really wasn’t happy that the Macmillan nurse had told me my results over the phone, and had also confused me with the order of events. My surgeon had wanted to speak to me himself about the melanoma. He asked how I felt, and there was genuine care and concern in his eyes.

He explained that the plan was to cut away a lot more tissue around the original wound site, slice a sliver of skin from my thigh, and magically affix it into place. I would then have a plaster cast set around my leg.

I went down to theatre soon after, monitors were placed here and there, bleeping that all was normal, an oxygen mask went over my face, and a thin needle introduced the anaesthesia into my system. I remember the eight, bright lights above me. zzzzzzzzz

Coming round, I couldn’t feel a thing, but I could see a fat, bandaged leg poking out from the covers. The nurses and doctors in recovery were amazing, so attentive, cheerful and professional. I was treated like a star!

About an hour and a half after coming round, I was discharged, and we began the drive home. Just before we left though, the anaesthetist popped her head around the curtain to see how I was doing, and to make sure everything was OK. She made a shape with her thumb and forefinger, to show the size of the new wound ~ it appears to be mahoosive!!

I spend a dopey afternoon in bed, taking the super strong painkillers at regular intervals. I now know I have to time it right to make a trip to the loo, ha ha.

May16

A phone call from the Macmillan nurse

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On Thursday afternoon, 16th May, the Macmillan nurse phoned whilst I was on the computer doing some school work. She had the results. As far as my back was concerned, the results came back negative, but they would probably err on the side of caution, and carry out a further, wider, deeper excision, at some point.

She then asked me if it was alright to continue talking over the phone about these results. There was something in her voice that told me it wasn’t going to be good news. And it wasn’t. The alien blob from my foot, was indeed a melanoma.

I couldn’t speak, I didn’t know what to say, nodding my head and tightening my fist until my nails dug into my palm.

I should be going to Derriford hospital tomorrow for a wide local excision with skin grafting. But she continued to tell me that I would probably just be going to Plymouth for a chat with my consultant, and then come straight home. It was unlikely that I would have the operation.

Continuing with her outlining of events, she said that the MDT had met the previous Tuesday morning, with my results appearing that same afternoon. It was probable I would be sent to Exeter for further surgery, but not until the team had met this coming Tuesday, and discussed their cases.

I would have a sentinel lymph node biopsy at the same time as the surgery on my foot, along with the skin graft. The biopsy meant injecting a blue, radioactive dye at the site of the wound, and then looking for an offending nodes that had turned blue. These would then be removed in the hope of stopping the spread of the disease. The nearest lymph nodes to my foot were those in my groin.

It was a long phone call, where she did most of the talking. It left me scared, confused, unsure, and made for quite a sleepless night.

What should we do?

Will the operation go ahead?

Will it be worth driving to Plymouth at all?

And what of the melanoma, what were the implications for me?