Category Archives: Thoughts

Feb20

One hundred days post-op

Posted on by
Standard

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.

Feb11

Four weeks of “pills”

Posted on by
Standard

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!

Feb7

My left leg has shrunk!

Posted on by
Standard

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

Posted on by
Standard

image

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.

Jan21

The Garment

Posted on by
Standard

image

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.

Jan15

Clinical Trial ~ Day One

Posted on by
Standard

image

Wednesday 15th January

So this is it! The day I start on the Combi-Ad drug trial. From what I’ve read, this is the best one to get on. The drug combination may even become licensed before the year is up. Results have been showing great things in Stage 4 patients, so let’s hope it delays progression, or stops this melanoma in its tracks. I really am hoping for good things.

Two pink capsules and one small round tablet are taken first thing in the morning. Nothing to report.

Two pink capsules are taken twelve hours later. Nothing to report.

My journey starts here. Where will it take me? Let’s hope I have a long and varied road still to travel.

Jan14

It’s D-Day

Posted on by
Standard

image

Tuesday 14th January

Another long drive to Exeter. It’s D-Day today: provided I pass the final day of tests, I’ll be given my drugs!

The Pigmented Lesion Clinic is first ~ Dermatology. All clothes, apart from underwear removed, and the consultant checks me all over, very carefully, using a dermatoscope. He is very thorough, and finally announces that all is good, and he wants to see me again in four weeks.

Next stop is the lovely trials nurse for another batch of form filling, blood pressure, temperature, and four vials of blood taken from my arm. All looking good here.

We then move into the main waiting area, which is filling up fast. I’m called into one of the consulting rooms, and introduced to the ob/gynae consultant. He seems quite pleasant and cheerful ~ “I’ve been called down here to perform a technical function”. Well, if that’s what you want to call a pap smear, that’s OK by me! Bottom half clothes removed, smear sample taken, time to get dressed.

I move back into the waiting area, but it isn’t long before I’m called in to see the oncologist. Clothes off again ~ apart from underwear!! He wants to check my scar, the lumpy swelling at the top of my leg, lymph glands, my liver, abdomen.

And, and, and, well? Yes, all seems in order for me to take part in the Combi-Ad drugs trial! This is now getting serious. Down to business ~ I am given two pots of tablets: the big pot ~ Dabrafenib/placebo, two to be taken twice a day, twelve hours apart, one hour before food/two hours after food; the small pot ~ Trametinib/placebo, one taken each morning.

Combi-Ad, for one year! Well actually 12 months x 4 weeks = 48 weeks, or 12 months x 28 days, which is only 336 days in total.

Bring it on! Placebo or not, drugs or not, I’ll be incredibly well monitored with monthly visits to Exeter to see how I’m progressing.

If this helps me to live longer, live healthy, live happy, then GlaxoSmithKline you can look after me for a year. I’ll be on that tropical beach, under a parasol, cocktail in hand, living, loving, laughing for a good few years to come.

Jan10

Lymphoedema and Support Stockings

Posted on by
Standard

image

Friday 10th January

Well, that was the most un-positive day I’ve had for a long, long time.

I’m normally very upbeat and try not to let things get me down. Even if I’m feeling low, I try my hardest to put on a ‘happy mask’.

Today though it all seems very hopeless and a slide down towards despair and inevitability. Nothing is going to make this right, or better, or normal.

I rarely use the words don’t, can’t, won’t as far as my actions are concerned. But I don’t like this. I feel I can’t do this anymore. I won’t ever get back to being how I was.

My appointment with the lymphoedema nurse lasted an hour and a half. Many measurements were taken of both of my legs. Every four centimetres the circumference was measured and noted down. And yes, there were fairly large differences between the two. It turns out my left leg is carrying 800 mls more fluid than my right. Almost a kilogram in weight! No wonder the skin feels tight and stretched, no wonder my knee and thigh feel heavy and numb, no wonder I have trouble walking properly.

And what is the solution? A support stocking. There you have it. I will have to wear a tight garment on my left leg for the foreseeable future. This thought really does depress me, and the happy mask that I wear everyday, seems to slip away.

I leave the hospital feeling very low and despondent. I didn’t sign up for this!

Jan2

The Tests Begin

Posted on by
Standard

Thursday 2nd January

We set off early for our 100+ mile journey to Exeter, arriving about 11:30am. Husband drops me off and continues into the city with elder son, (no point staying, as they wouldn’t be able to accompany me during the testing!).

My first stop was to oncology where I had to pick up a trials worksheet, and other paperwork.

I then walk down the hospital’s long corridor to Medical Outpatients. I didn’t even reach the reception desk, but was intercepted by a lovely  voluntary worker who asked where I needed to go. She took me to a room marked ECG, knocked on the door, and told me to take a seat: the door opened before I sat down! A number of sticky pads are attached to my ankles, tummy, chest and neck ~ no more than ninety seconds later and it’s all over. The only data I understand from the printout is my heart rate: 65 bpm, not too bad, I suppose!

My next move is back along the corridor to x-ray for a CT scan. Here, I have a wait of about ten minutes, then I’m ushered down the department hallway to a cubicle, and told to strip off, and put on a wonderfully fetching hospital gown. My name is called, and into the room I go. Lying down on the couch I have to clench and unclench my fist with a tourniquet tightly around my upper arm. A needle is inserted into the vein of my right arm, in the crook of my elbow and secured in place. I then have to raise both arms above my head; as the nurse leaves to go to the safety of an enclosed ante-room, my back and forth journey through the big white doughnut begins. As the radioactive dye enters my system I get a metallic taste in my mouth and a warming sensation. Thorax, abdomen and pelvis are first to be scanned, followed by head and neck. The whole procedure is over in less than half an hour, the nurse removes the line from my arm and sticks a dressing on. Thanking her, I leave, get dressed and go and find the coffee shop! Not having eaten breakfast, but just the requisite 500ml of water an hour prior to the scan, I was looking forward to a cappuccino!

My last port of call was to the Eye Unit. When I arrived at reception there was no record of my details on the system. A quick visit to one of the consultants, and he knew why I was there, and what tests to carry out. A standard eye test was followed by some strange drops into my eyes. Two vials were mixed together, forming a fluorescent yellow liquid ~ and it did sting ~ making me cry toxic tears. Various eye movements were called for, as the consultant peered through lenses and shone bright lights to carry out a variety of retinal ophthalmic examinations.

And then, it’s all over for today. Not too much waiting around, nothing particularly painful and everyone so kind and helpful. Our drive home begins, and we are there in time for dinner.

Dec31

Appointments ~ all change!

Posted on by
Standard

Tuesday 31st December

The trials nurse from Exeter rang three times today ~ she joked she felt like my stalker! What she was doing, was trying to arrange all my appointments into as few days as possible. And I think she’s succeeded.

This Thursday I have a CT scan, an ophthalmic review and an ECG, all at Exeter hospital.

The following Monday I go to cardiology for an Echo cardiogram, then oncology for bloods and obs, and finally to surgical out-patients to visit with my plastic surgeon for an eight week review following surgery.

A week Tuesday I have an appointment at the Pigmented Lesion clinic for a full dermatological check-up. This will be followed by a visit to the trials nurse for more blood and obs, an appointment with my oncologist, where ‘randomisation’ takes place, and I’m issued with my first course of medication. Combi-Ad. Things are beginning to get serious.

I also have appointments closer to home as well, with the lymphoedema nurse, the occupational health officer, and at the local surgery for a pap smear.

I am entering new territory, feeling rather apprehensive, a little scared, but oh so hopeful and positive for what lies ahead.

As 2013 comes to a close, I will awake tomorrow assured that all my consultants, specialists, doctors and nurses all want the very best for me.

And I’m with them on that one! Bring on 2014, I’m ready to fight for my health!