Monthly Archives: February 2014

The New Normal

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Friday 28th February

Take advantage and do the important stuff, the rest will happen come what may.

The best way to fight this disease is to be alive for as long as I can.

No easy options, it is what it is. There are no answers.

There are always clinical trials. There should always be hope. Maybe one day this will be a chronic rather than a terminal disease once stage 4 is reached.

The Combi-Ad trial makes me believe I am doing something to help my outlook, my prognosis, my survivability chances.

The diagnosis changes your life ~ you have to adjust your priorities.

I may have cancer, but cancer doesn’t have me.

Cancer may leave my body, but it will never leave my life.

These are just some of the thoughts I have as I realise that this is the ‘new normal’ for me. There is no going back. Live with it. ‘Build a bridge, and get over it’.

Adjust.

Adapt.

Accept.

 

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.

ÂŁ7000 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.