Category Archives: Lymphoedema

Aug15

Last days in Orlando

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Friday 15th August

 I awake feeling so much better, and we decide to drive South West to Tampa, and Busch Gardens. I again hire a motorised mobility scooter, and begin our journey around the park. By the time we reach SheiKra the sky is darkening, lightning threatens, and the rides are closed ~ so, so disappointing! We spend quite a while moving around the park, looking at the various animals, but in the end we call it a day, give up, and begin the drive back to Orlando. I think last year, almost the same thing happened, it absolutely poured with rain as we arrived in Tampa, we didn’t even make it into the theme park, turned around and left! Never mind, the new ride Falcon’s Fury has yet to open ~ there’s always next year!

The weather improves upon our return to Orlando, and we go to look at some American classic cars and hot rods.

Our last day in Orlando is spent shopping and packing. We drive up to the Mall at Millennia and browse the shops in cool air-conditioned comfort. Again there is another spectacular afternoon thunderstorm to end the day and clear the air.

We pack and load up the car that evening, ready for a quick getaway tomorrow morning. It has been a different sort of holiday in Orlando this year, what with the thunderstorms and my cellulitis. Lots of activities having to be curtailed. Still, I think we made the most of it, visiting all the theme parks that we had planned upon, just not as frequently as we would have liked!

Aug8

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.

Jul30

Holiday ~ the first five days

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Wednesday 30th July

We land in North Carolina mid-afternoon, collect our bags, pick up the hire car, and we’re off. The start of our summer vacation begins; we’re off to South Carolina for a few days. The air is warm, the sky is blue, and after two flights, a total of over nine hours flying time, my leg feels surprisingly normal. I had been exceedingly anxious that lymphoedema and swelling would be a big problem. But no, all is good! A huge consumption of water and gentle exercises during the flight has paid off. Plus the wearing of my stocking/compression garment has kept things under control.

The weather this year is particularly grey and rainy, and we are unable to spend time on the beach as we would normally do. This is not as great a disappointment as I thought it would be. I can no longer sit out, sunbathing. It is not healthy for me or my skin.

We potter about, go shopping, visit with friends, and go for walks along the beach. It’s gentle, unhurried and relaxing. Just what a holiday should be.

Jun11

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.

May28

My Birthday

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Wednesday 28th May

Another birthday, another year older; and what a lot has happened and changed in my life.

The weather has been glorious, the sunsets amazing, and the dolphins swimming and splashing across the bay sharing in my happiness of being with my family.

This time last year I was hobbling on crutches, with my lower leg bound and bandaged. I had had a skin graft from my thigh applied to an area on the top of my foot. A dodgy mole had been removed: the Alien Blob had been a malignant melanoma, a deadly form of skin cancer.

I have learnt an incredible amount over these last twelve months, but try not to let anything get me down. I had to stop teaching, due to the surgeries and resulting lymphoedema, missing the students incredibly, but I am to be returning in September. I have also accepted that I cannot change things, it is no good looking back at the past and wondering. One shouldn’t live with regrets. None of us knows what the future may hold, but to wake up and enjoy another new day, is indeed a blessing. Living for the moment, not wasting time worrying, being amongst a loving family, healthy enough to travel and meet with friends, focussing on what really matters, this is my life now.

May23

French, silky, lacy………

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Friday 23rd May

It’s French, has a lacy top, feels quite silky and stretches beautifully. It’s my new American Tan support hose! I haven’t been this excited about medical compression garments since, well, I don’t know when.

I had my weekly appointment with my lymphoedema nurse this afternoon. Thirty minutes of targeted massage on my left leg; most relaxing and beneficial. My nurse had been promising a new stocking for me to try, and today it had arrived. It was a sample pair, promoted by a rep, who had left it for me to trial. Appearing extremely short, almost a knee-length sock, it did stretch easily from foot to the very top of my thigh. A lacy band decorates the top, frilling almost like a wedding garter!

In the warmer weather recently, I have been wearing shorts or skirts, and it would be good to have two legs on show, that are of the same colour. At the moment, one leg is normal, the other a sludgy, bandage-beige!!! But no-one has made any comment ~ it’s just me being vain. I think I must look like a dork! Maybe people are being polite 😜 Still, it will be good to go out and be able to not rock the Nora Batty look!!!

May6

One year on

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Tuesday 6th May

One year on…….

It was during this week, a year ago, that I had a dodgy mole, the Alien Blob, removed from the fourth toe of my left foot. A day patient, I remember everything so well. There were no problems, everything went smoothly, and I went home quite relaxed, thinking everything would be all right.

How wrong would I be?

Six months on…….

It is now six months since I underwent major surgery to remove the lymph nodes in my left groin. Having ascertained that the Alien Blob was a malignant melanoma, I was soon to learn that the cancerous cells had spread through my lymphatic system. Following a positive sentinel node biopsy, I spent six days in hospital undergoing an inguinal dissection.

Four months on……

Although being told by my surgeon that he had removed all the cancer filled nodes, I could have sat back and done nothing. Just let things take their course. Check-ups, maybe, every three or six months. I wouldn’t have felt happy doing that, not knowing, not helping myself. So I was really lucky to get on a clinical drugs trial using a combination of two drugs, looking at the halting of progression and also the side effects. I have just ‘passed’ my four-month review at the hospital in Exeter, and been issued with my two pots of pills. Appointments having been made for four week’s time.

And here I am, a completely different person from the one I was a year ago. I began writing this blog, to put my thoughts and feelings down in words, to remember events, and chronicle all that has happened to me. One year on, I have had over a thousand hits!

Yes, there are days when I privately worry, wonder if I will progress to Stage 4, what will happen to my family, how ill I might become. However I don’t want these negative thoughts to bring me down. I have been off work for the whole year, recuperating, slowly building up my strength. I try to eat healthier, to take some gentle exercise every day, to get a good night’s sleep, but most of all, to enjoy every single day, to be positive and try to see the good in all things or situations. It’s hard work, very challenging; but I want to stay alive.

I’ll keep on keeping on.

Apr17

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.

Feb7

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.

Jan28

14 Days of Pills

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Tuesday 28th January

Day fourteen of taking the pills, and I’m not sure if they’re the real thing or the placebo. Dabrafenib and Trametinib, or simply harmless smarties? The Combi-Ad clinical trial has seen me give up many of my daily supplements, remember to time the taking of the tablets one hour before or two hours after food, and to question every little deviation from the norm in my body. I have to make a note of any changes, however small.

There haven’t been any temperature spikes (and I did go out and buy a digital thermometer especially!), and this was one of the side effects I was predominantly warned about. No joint pains, nausea, hair loss, rashes or sight problems. I do though feel more fatigued, and am constipated!!

Drugs or no? I just don’t know. I thought if I was to be taking the drugs, I would really, really notice the side effects. So, I have believed I’m on the placebo arm of the trial.

Before beginning the trial I think I’d hoped to be on the placebos: certainly no side effects, but all the intense monitoring. A couple of weeks in, and I’m starting to question that! Perhaps it would be more worthwhile if I was actually taking the real thing, and it was improving my survival chances.

Late on in the evening my trials nurse telephones to see how I’m getting on, any changes that I notice in my health, and to remind me of my appointments in two weeks (dermatology, Echo, eye exam, bloods, obs, consultant), she has it all organised! I tell her all is good, with no ‘temperature episodes’, and I find out that the five other patients on the drugs at Exeter have also not had these symptoms.

Ahhh, I had believed a high temperature was the main indicator of the trial drug. So might I actually be taking the real thing? Who knows? Not me, the nurse nor the oncologist. Only within a laboratory of GSK will my name be matched to the answer.