Author Archives: MeRaw

Jun10

The Results

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Monday 10th June

The CT Scan results have come back clear. The melanoma has not spread to other body organs.

The big black cloud that has been hanging over me for months has now turned into a fluffy little white cloud.

Not totally out of the woods, as it looks likely I will have the Sentinel lymph node biopsy at Exeter at some stage ~ will know more on Friday when I see the consultant who will refer me. I’ll also have check ups every 3 months. BUT this episode has now passed, and I am so relieved.

Husband and I went to the appointment with hearts beating overtime, pulses racing, and tummy doing flip-flops. We also cried when we went in. Scared, not knowing what to expect, I somehow assumed the worst. All I could think of was the accepted thickness indicator, the fact that my melanoma measured 6mm, and a prognosis of survival being 37 – 50% for staying alive for the next 3 – 5 years. Not good odds at all. Having been told that the scan came back clear was the greatest feeling in the world. The massively heavy weight bearing down on my shoulders had been lifted. I was being given a second chance. Having arrived crying, we also left the appointment in tears; but these were tears of relief, of happiness, of joy.

Son was so happy and elated, too: the best news ever. His partner texted the following:

We are both so relieved. Just get the biopsy done and dusted, for peace of mind, then you can totally move on feeling blessed. Make sure you do learn from this awful experience though. It was a gift so you could fully realise you need to actually start enjoying your lives together now. We’re here for a good time, not a long time. Love you very muchly xxxx

Such lovely, tender, thoughtful words.

I still keep my leg elevated, and have it dressed twice a week. I have further appointments coming up. I will not be going back to work soon, and certainly will not be spending a week on the beach with a group of students, learning to surf.

I need to fully recover, to get back to feeling ‘normal’, before going back in the classroom. The nurse told me today that there is no point returning too soon, and undoing all of the healing process.

I feel so amazingly well looked after. Today’s consultant has rearranged her theatre list, and will do the wider excision on my back on Monday, 9am, just because I said I would prefer her to carry out the procedure and no-one else

Positive, positive, positive all the way.

A truly amazing end to the day.

Blessed.

Jun7

Friday at the Surgery

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Friday 7th June

Just returned from the surgery for my twice weekly dressing. Another infection. More antibiotics. Yah boo sucks.

On Monday I have been called to the hospital to see the original consultant who ‘did’ my back, and referred me on, for my foot.

I believe she is going to talk me through the CT scan results. It’s make or break time.

Positive, positive, positive thoughts. Crossing everything.

Jun5

CT Scan

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Wednesday 5th June

Computer Tomography

The scan was a bit unnerving, uncomfortable, and am now full of dye.

Two separate scans: one upper body, first without dye, then stuff goes in through your arm, which is bent above your head, then back and forth again, through the ‘doughnut’ wheel, holding breath, and keeping perfectly still. Second scan, jump up, change position, and put head in a helmet like contraption, close eyes and don’t move. The whole thing took about 30 minutes. All I could think about was what they were going to find.

I did feel a bit wobbly when I came out, so had a cappuccino and flapjack at the little coffee shop at the entrance.

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?