Category Archives: In my bed!

Fugly Cellulitis

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Friday 8th August

Today is hot, scorching actually, and we decide to get up early and drive South West to LegoLand. As the park had just opened, the queues were not too bad when we arrived. We made our way through the miniature cities and displays, and on to the water park; locating a huge parasol we parked our belongings and found the wave pool. It was gentle fun, a few hours spent idly reclining on the chairs, or building a Lego raft and drifting around the lazy river. As we leave, son decides he wants to go on one final ride, a rollercoaster, and husband and I wait in the shade. This is where I begin to feel really hot and uncomfortable, and eventually husband has to pour iced water down the back of my neck to cool me down. We arrive back at the car and the dashboard display shows 104℉, no wonder I’m overheating. I think I had a ‘heat episode’.

On Saturday we didn’t go to a theme park, deciding to have a much quieter day, and went shopping instead. Again I started to feel funny, fluctuating between feeling hot, shivering, and nauseous. We had to cut our trip short, drove back to the villa, and I went to bed. That evening I had noticed the top of my leg, underneath the support stocking, had begun to look a bit red and blotchy, but put it down to the excessive heat.

On Sunday we went to Universal Studios, hiring a motorised wheelchair with a sunshade on top. This was an absolute godsend as I was able to rest my leg. I could now move through the theme parks with much ease! We also loaded up the front basket with our bags and a cooler full of iced water. Another benefit was that on some rides I could jump the queue! It was a long day, just over six hours, but great fun was had by all

When we got home later that afternoon, the redness on my leg had become more intense and hot. I suspected cellulitis, so that night I began the two-week course of strong antibiotics that I had prescribed from my GP before leaving home, (thank goodness I had them with me). I also took pictures of my leg, and emailed my trials nurse.

Using my American cell phone I spoke with my trials nurse on Monday morning, and she had already spoken to my oncologist, who agreed that yes, it probably was cellulitis, take the antibiotics, and if the redness spreads, to seek medical help!!!

Overnight the redness had not spread. It’s just really bright, hot and sore, looking quite frightening and scary.

I spend Monday, Tuesday and Wednesday in bed, eating very little, but drinking copious amounts of water. I feel tired, but the sickness feeling and headaches, and the fever have gone.

This is crap.

I hate it.

I thought all was going to be ok.

I’m never bothered by hot weather.

I thought I was invincible.

How stupid am I?

Apparently having lymphoedema makes you more susceptible to getting cellulitis. But this is usually through a scratch or insect bite.

I have neither.

On Thursday it is our thirty second wedding anniversary, and I finally feel well enough to get up, get dressed, clean my teeth, have a shower, and try and look and feel almost normal again. Husband drives to Cocoa Beach, and we have a wonderful celebratory lunch overlooking the ocean.

Three nurses’ telephone calls

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Wednesday 18th December

Yesterday we left Exeter and drove to Plymouth where we spent about four hours Christmas shopping. I took it slow, stopping for coffee breaks and lunch, but by the end of the day, my foot, ankle, calf, knee and thigh were incredibly swollen. Up until now, my only exercise has been bursts of about twenty minutes, going from the house, to the car, to the local supermarket, and then sitting in a coffee shop.

So on Wednesday I didn’t get out of bed. The swelling of my left limb was quite scary, and I didn’t want to risk any further problems. I lay there, with my leg elevated, and dozed for most of the day.

The first phone call I received was from one of the Macmillan nurses asking how I was doing, and whether I had made a decision on the Truro trial for Brim8 (vemurafenib). I apologetically declined, stating the very frequent monitoring, increased side effects, and the fact that all I had read made the Exeter trial, Combi-Ad, the more preferable. She was very understanding, and thought that would be my decision anyway. She also made an appointment for me to see the other Macmillan nurse after Christmas.

The second phone call I took was from the trials nurse in Truro; she wanted to know my decision. I felt a little bad declining their offer, but she too was most understanding.

Finally, I was called by the lymphoedema nurse at the local hospital in Hayle. We organised an appointment for later in January, where she would show me lymphatic drainage massage to control the swelling of my leg, and when she would take a lot of measurements of my leg, ready to have garments fitted. ‘Garments’???  Oh, those wonderful support stockings that guard against lymphoedema.

Well, anything that helps me return to some semblance of normality, I suppose I will have to accept. Trials, tests, monitoring, travelling, even support hose ~ if I value my life, I will do as the experts direct me.

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.

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.

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!

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!!

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.

Home

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Monday 2nd September

Plane, train, taxi, home; and relax . . . . .

Oh, hold on, unpacking to do, laundry to sort, post to open, finally shower, and bed ~ I feel as if I am still moving. I have now been up and awake for thirty five hours, and over the last five and a half weeks, I have slept in seven different hotel beds ~ my own now looks so, so inviting and welcoming. Sleep comes easily, the holiday melts away into dreams as my head hits the pillow.