Category Archives: Nurse

Stitches and strolls

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Monday 13th July

This morning the stitches came out of my left arm, where I had a suspect mole removed almost two weeks ago. It was a painless and simple procedure carried out by a nurse at the surgery; I’m now left with a 2cm scar, and a bit of a dent in my skin. Ho hum, I have to be patient and wait sixteen days for the results.

The afternoon was spent with your brother’s girlfriend, as she’s still not well enough to return to work. We did have a little stroll along the harbour front, trying to dodge the many holidaymakers, and we stopped to have a cappuccino to watch the world go by.

You liked people watching, too. You were especially fascinated by young children, or crying babies. You wanted to see how parents would interact with their children.

I wish you were still here, walking across the wharf with us. We could stop for an ice cream tub, then go and look in the bookshops, or watch the surfers in the sea. It’s just not the same. I wake up thinking of you, and am still thinking of you when I go to bed.

Know we love you with all our hearts.
We miss you more every day.
xxx

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Trial ~ Month Eight

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Tuesday 26th August

We reluctantly fly back across the Atlantic on Sunday night, arriving bright and early Monday morning. Returning to our car, loading all our luggage, we then set off for Exeter where we spend the night, catching up on our sleep.

In the morning my first appointment is at dermatology, where the faint redness can still be seen, as a result of the cellulitis. Thank goodness for the antibiotics that I took with me! No other cause for concern is noted, following a full body check.

Then it’s onto the ward where I see a different trials nurse for blood and obs (my usual nurse is on her summer break). Everything is stable and wonderfully normal. Big sigh of relief!

The final appointment is with a different oncologist from my usual one (also on vacation). Pots of pills handed over, and we’re soon on our way home.

After two long days of travelling, it is so good to fall asleep in my own bed.

The end of Summer, turns into the beginning of Autumn: new season, new hope.

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.

Month Seven

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Tuesday 29th July

Doesn’t time fly when you’re enjoying yourself?

Seven months down the line, and I’m back for my review; just the dermatologist for a skin check, trials nurse for bloods and obs, and the oncologist for an assessment, lastly the issuing of my next batch of medication.

All the appointments go smoothly, everyone is happy, and we leave smiling, thinking positive thoughts.

Our summer vacation can now begin! We start our drive to Heathrow, where we stay overnight, flying in the morning to North Carolina.

Lymphoedema appointment

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Wednesday 11th June

I have been coming to see my lymphoedema nurse for about six months now on a weekly basis, for lymphatic drainage massage on my left leg. It’s like gentle body brushing of the fluid, encouraging it up my leg, past the long scar at the top of my thigh, and then towards the nodes in my armpit.

Following surgery last November, I no longer have inguinal nodes in my left groin, so any lymph fluid in my leg has to be given a new pathway in order to disperse it. Wearing a surgical stocking every day has helped with the swelling too, and my foot and ankle are no longer as swollen as they were.

However from the inside of my knee to the top of my leg, there is still a certain amount of puffiness! In fact today the nurse measures my leg, taking a circumference every five centimetres. Her calculation shows that my left leg is carrying 1200 ml of extra fluid compared to the right limb.

That is a huge amount! A big bottle of lemonade! One point two litres!

I try to exercise by walking every day, I drink lots of water, eat lots of fruit and vegetables, and have cut down on sugar, dairy and carbs. It really is quite disappointing.

For the remainder of the session I have my leg encased in the inflatable boot that delivers pneumatic, pulsing massage in a gentle, relaxing manner.

Keep on moving, keep on hoping, keep on believing.

Lymphoedema update

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Thursday 24th April

For the last three months I have been going to see my lymphoedema nurse on a weekly basis. At first I hated it. To admit that one of my legs was fat, swollen and heavy was not an easy thing to do. To be fitted with a surgical garment that I must wear every day is even less appealing. To know that it is probable that I will have lymphoedema for the rest of my life takes an awful lot of getting used to.

To begin the session, the nurse uses manual lymphatic drainage massage, followed by zipping my leg into a full length inflating wader type contraption. The machine inflates and deflates, moving section by section up my leg. Intermittent, pneumatic compression! It feels very therapeutic, and hopefully the lymph fluid is being encouraged up my leg, to find new nodes into which to drain. Following a thirty minute session on this machine, the nurse then uses Kinesio taping from the top of my leg, around my hip to my lower back. This is another way of trying to channel the lymph fluid away from collecting in my leg, and finding a new drainage route.

Back in January when the nurse measured my leg for the support stocking, my left leg was found to be carrying 800mls more fluid than the right. In February it had dropped to 266mls, so I felt really good about that. However, today, upon a new set of measurements, my left leg is heavier by 1100mls. What on earth is going on? Yes, I have been trying to exercise by taking walks around the town, probably lasting between thirty and fifty minutes. Most afternoons I have rested up my leg by lying on the sofa in the lounge. Not very exciting, but it’s all I can manage at the moment.

One hundred days post-op

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Thursday 20th February

One hundred days ago I was in Exeter hospital, very early in the morning, first on the theatre list, ready to undergo a lymphadenectomy, or inguinal clearance, otherwise known as a groin dissection. Put quite simply, I was going to have the top of my leg sliced open, and the remaining lymph nodes and surrounding tissue scooped out, with the hope of removing any further pesky cancerous cells that had made their way from my left foot, up the lymphatic channels to the next port of call: the lymph nodes in my groin.

One hundred days ago, I came round from the anaesthetic and discovered I was hooked up, intravenously to morphine, saline, and antibiotics. I had oxygen tubes attached to my nostrils, and a large drain tube exiting my inner thigh, depositing blood and fluid into a bottle located on the floor. I felt groggy, disoriented, but not in too much pain ~ the morphine was taking care of that, and I had control of the button administering doses!!

One hundred days ago; such a long time. My scar has healed exceptionally well, and despite the drain tube becoming blocked, resulting in an infection, cellulitis and a seroma, all is nearly back to normal. Well, not quite, lymphoedema of the limb necessitates the wearing of a tight, support stocking. However, the swelling and heaviness is easing.

Onwards and upwards. Keep on smiling and being positive. We’ve booked the flights for our summer holiday, (slightly shorter than we would have liked, due to fitting in with the four-weekly hospital trial visits, but that’s being greedy!!), and I’ve had conversations with my headmaster about returning to school, albeit on a reduced timetable, (I have certainly missed teaching). So, things are looking up. Time to become a little more active, get the brain back into gear, (I need to brush up on trig functions and vectors!) and enjoy life.

Four weeks of “pills”

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Tuesday 11th February

Today I turn into a stripper!

(Not too racy, not too lacy. Matching. Black. Hospital-ready underwear! Much thought goes into ‘what on earth shall I wear?’)

I spend six hours at the hospital.

I took my clothes off and on four times.

Once for the dermatologist for a skin check. (He mostly checked up and down my left leg, but also my front, back, arms and right leg. All seems fine).

Once to have an ECG to have the sticky pads attached. (Wires were stuck to my feet, tummy, sides, chest and neck. A quick printout, and all was done).

Once for an Echo to have an ultrasound of my heart. (An ultrasound device was covered in gel, pressed against my chest, and many 3-D, colour images and measurements were taken of the functioning of my heart. All seems fine).

Once for the oncologist for a whole body/tummy/groin/liver ‘feel’. (He looked at my left foot first, the site of the original alien blob. Then he moved on to lymph nodes, tummy, neck and back. Again. all seems good).

Bloods were taken too ~ four vials. Temperature, blood pressure and weight were noted.

I had an eye exam as well.

All looking good.

Four more weeks of pills issued.

£7000 worth!!! (If they’re the real thing !!!) Thank you GlaxoSmithKline.

In at 10:30am, out at 4:30pm. Six hours of tests, checks and reviews. A long day, going from waiting room to waiting room.

Am I, or aren’t I? The real thing, or a placebo? I would really like to think the ‘drugs’ are stopping the progression of melanoma. Keep positive, eat sensibly, sleep well, keep active, smile lots!

My left leg has shrunk!

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Friday 7th February

My left leg is definitely smaller than it was. Measured by percentage volume, it has shrunk! Yay ~ good news 🙂 😀

Today I have an appointment with the lymphoedema nurse. I have been wearing the ghastly garment, the stupid stocking, the horrendous hose for two and a half weeks. This tight, surgical, mud-coloured tube stretches from my toes to my crotch. I have half-heartedly pulled it on every morning, battling against the compression material as it encases my leg. I have moaned. I have grumbled. I have cried. I peel it off just before getting in to bed at night, and luxuriate in the freedom I feel from not having my leg bound.

So, I lie on the couch and the lymphoedema nurse begins taking measurements of the circumference of my leg, at 4cm intervals. She then moves onto my right leg, continuing with the procedure. Having completed entering the data, she informs me that my left leg is carrying 266mls of extra fluid. This compares with 800mls the first time she took measurements. My left leg is now only 2% bigger than my right. It was 8% bigger at the start of January! Oh. My. Goodness. My leg has shrunk!

It must be the magical material squeezing the lymphatic fluid away from my leg-without-nodes, to be dispersed elsewhere in my body, where the lymph nodes are working perfectly well.

So, I really have to own up, and admit it; the surgical support stocking might actually be working to reduce the swelling. My ankle is no longer puffy; my calf does not bulge; the knee cap is not ballooning; the thigh does not resemble an over-sized tree trunk. Stick with it, and reap the rewards.

The Garment

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Tuesday 21st January

Support hose, surgical stocking, compression garment.

None of these titles convey anything but ‘old granny’, ‘saggy baggy’, ‘creased and crumpled’, ladies with fat ankles ~ ‘cankles’

Today is the day I’ve been dreading.

My new ‘American Tan’ stocking was pulled and stretched onto my left leg by the lymphoedema nurse, wearing a pair of blue washing-up gloves! She said these were good to get to grips with the tight fabric, in order to clothe my leg in this ghastly, knitted, tight, mud-coloured tube.

I’m not usually one for negativity, moaning, whining or crying, but the sight of my left leg, covered from toe to crotch in this horrendous material did make me sob.

Yes, I am vain, I admit it. I want to wear skirts and sandals in the spring; I like shorts and flip-flops in the summer; bare legs!

Well. I’ll just have to grin and bare it (ha ha!!). I’ll put up with this compression garment for a few months, and who knows, maybe the lymphatic fluid will be encouraged to drain away, up my leg, and find other lymph nodes and channels in which to disperse. I do hope so.