Tag Archives: macmillan nurse

Another mad dash!

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Monday 9th December

Having gone to our local hospital on Friday, we were back again this morning for another emergency visit!!! I was seen immediately by the specialist cancer nurse, and a consultant. The swelling/redness/pain/hard lumpy feeling is cellulitis 😦 This can become dangerous if left, and lead to septicaemia.

So I am now on a mega dose of penicillin, 2000mg a day. Hit it hard, and it should go away!!

I hate feeling like this.

But, some vestige of good news: the plastic drain bag is no longer stuck to my leg. There is still an open, exit wound, where the drain tube came out of my leg, but this is slowly beginning to close up. The ‘stuff’ that should have been draining out is further up my leg, which has now become infected ~ oh joy!!

Anyway, back again for a review on Wednesday morning. If there is no change, or the bruising and redness have increased, then the ‘lump’ may have to be drained off using a fine needle ~ not a pleasant prospect!

Still, I can’t fault the service; I have been seen, at the drop of a hat, every single time 😉 The nurses are amazing, and take time out to talk and reassure you.

Hopefully normal service will be resumed soon.

A quick dash to the hospital !

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Friday 6th December

Well, I didn’t expect a rushed visit to Treliske today!!

Having seen my plastic surgeon on Monday in Exeter, and told the drainpipe in my leg was not ready to come out (still losing too much fluid), I phoned the Macmillan nurse in Truro today.

The top of my thigh really was beginning to feel very ‘wooden’, hard and bruised. She said to come along straight away!!! At Truro they don’t like drains being in for more than two weeks, mine was there for three and a half weeks.

I saw the nurse immediately, who then brought in a consultant, and a phone call to Exeter made. Yes, the tube could come out!!!

The nurse thought the bruising and hardness was due to a blood clot or a haematoma. The tube was unstitched, and came out quite freely. It was blocked!!! Not allowing the blood and lymphatic fluid to drain away as it should. She then massaged, or ‘expressed’ the area, and lots of ‘stuff’ came out, and it really did lessen the hardness of the tissue below the surface of my skin.

I now have a plastic drain bag stuck to the inside of my thigh, carefully placed over the hole/open wound, but no invasive plastic tube!!! Yay, so much more comfortable!

The consultant drew a line in black pen, showing the outline of the hardness below the skin ~ if it spreads any further, I’m to get myself back there as quickly as possible.

I then asked the Macmillan nurse about possible drugs trials at Truro, and she said she would put things in motion for me to see the oncologist here, instead of having to travel all the way to Exeter on a monthly basis. We’ll see.

So, I end my day, minus the invasive plastic tube inside my thigh. The area still remains bruised and swollen, but hopefully now any further fluid can drain out properly, and the wooden feeling will subside.

A really long day!

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Monday 2nd December

Have just returned from a long day trip to Exeter.

I had an appointment at the dressings clinic, to see whether the drain in my leg was ready to be removed ~ no, not yet, as I’m still losing too much fluid. So plastic bag changed, and the site cleaned up.

Hmmm, another week of dangly bag between knees!

There was also a Macmillan nurse there who had a printout of my results, following the groin dissection three weeks ago: of the four further nodes removed, only one more contained melanoma, and that was ‘encapsulated’, no spread to the surrounding tissue which had also been removed. Three out of six, in total.

Does that sound good, or maybe OK?

She then spoke for a bit about the Combi-Ad drugs trial, I have been offered.

My wonderful plastic surgeon, who was conducting his own clinic, then popped his head round the corner, to say hello and check the wound, scar, red bruising, hot feeling, wooden thigh, that I now seem to possess! All seems normal, he’s happy with the progress being made, and will now refer me on to an oncologist, where I will find out more about the trial.

So, all in all, not a wonderful day, but not dreadful either.

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.

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.

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!

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.

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?

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.

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?