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.

Apr8

Results ~ three month review

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Tuesday 8th April

After the two days of tests at Exeter hospital, we decided to take a break and drive on to London for a few days to visit relatives and partake in a bit of sightseeing and retail therapy. There’s nothing like  a bit of distraction to take one’s mind off all the hospital tests, especially the CT scan. This is the one that really scares me, for it is this that may show progression of the disease.

Following a lovely four day break, we are on our way home, when my trials nurse phones me. She has the paperwork from the scan. My oncologist has yet to see it, but one of the senior registrars has given her the go ahead to tell me that all is fine. It shows “nothing of any medical significance”. My heart skips a beat, I feel so relieved and tension leaves my shoulders. Everything is good for another three months!

 

Apr3

One year ago

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Thursday 3rd April

On the third of April 2013 I had an appointment with my GP to check out a dodgy mole on my left foot. The Alien Blob. I think he knew what it was straightaway. And so began my melanoma journey.

Here I am today, in Exeter, undergoing two days of tests for my three-month review as part of the Combi-Ad clinical drugs trial.

I began yesterday with the dermatologist, still keeping an eye on a small mole on my left ankle. I then moved on to bloods and obs with the trials nurse. My next stop was down to Medical Outpatients for an ECG, then a bit of a wait for the final stop of the day: a CT scan. Oh joy!

Thursday began with an ECHO, followed by an eye exam, then the consultation with the oncologist and the handing over of my next month’s worth of tablets.

So here I am, a year after I visited my doctor, and already three months down the road with GlaxoSmithKline. Am I doing the right thing? Do I have any other choice?

 

 

Mar20

The day I told everyone

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Thursday 20th March

For the past few days social media has begun to be inundated with ‘no-make-up’ selfies, supposedly raising awareness for cancer research.

When this trend began I saw many of these selfies that were purely self-congratulatory where the person only seemed to be fishing for complements with their staged photo. There was no mention of cancer, raising awareness, nor of donating money.

It did make me cross. However, the power of the internet and social media being what it is, the campaign snowballed, raising over a million pounds in twenty four hours, and that is amazing. Being cross and critical initially, to get one’s point across will make some people unhappy, and I’m sorry, but I just felt I wanted to say something.

To date, only a very small number of people knew of my condition: family, close friends and some work colleagues.

I decided to unburden myself, to stop hiding away, to release the secret I had been keeping.

I posted a picture of myself on Facebook.  My own no-make-up selfie.

I was hooked up to a morphine pump, saline drip, intravenous antibiotics, and oxygen ‘spectacles’.

I described the plastic drain tube sticking out of the top of my leg, and the 20cm scar where all the lymph nodes in the top of my leg had been removed.

I stated that I am now a Stage 3 malignant melanoma patient.

It began with a dodgy mole on my foot.

The cancer spread to my lymphatic system.

I said I am raising awareness by asking you all to check your bodies.

I am trying to do something for scientific research by signing on to a clinical drugs trial to find out whether a particular combination of drugs can prolong cancer patients’ lives.

I am trying to do something to raise awareness by appearing on a poster recommending sunscreen use, having a SunSmart attitude, and staying away from sunbeds.

Following my declaration, I was inundated with messages of good wishes.

Oh my goodness.

It really was quite overwhelming.

Having finally decided to go public with my diagnosis, on my wall, posting a no-make-up selfie showing me in a hospital bed, hooked up to various tubes and the like, I do now feel quite relieved that everyone now knows what’s been going on.

I admitted that the actual photo was taken in November, in Exeter, where I had the lymphadenectomy.

I did feel like I was hiding away, only coming out to make short walks around the town or to have a coffee at Tesco!!

I deliberated for ages over posting about this topic, but have been amazed with the response from everyone.

I had so many comments, private messages and shares of my posts, I’ve felt quite tearful.

I haven’t done this to gain likes, nor as a ‘poor me, pity me’ post. I really do hope at least some have taken on board my message, check your skin, be SunSmart and beware of sunbeds. And donate something!

I haven’t been to school since last May, but aim to return in September, albeit on a much reduced timetable. In May, I will have been at HDS for nineteen years. I must love the place ~ in the words of Arnold Schwarzenegger: “I’ll be back!”

I try to keep smiling as much as possible, keep as positive as possible, and keep on keeping on.

Mar11

Two month review

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Tuesday 11th March

Leaving home at 8am to make the drive to Exeter, just over two hours away, I feel twinges of anxiety. I have been taking the pills for the Combi-Ad trial (trametinib and dabrafenib), for two months, and have appointments with the dermatologist and oncologist, as well as the trials nurse for bloods and obs.

A whole body skin check is first, and a small freckle-like mole is noted as something to keep an eye on. It’s on the inside of my left ankle, about 3mm in diameter, with a slight dark, raised pigmentation to it. Hmmmm, have not noticed that before; will have to watch it. Two consultant dermatologists had a close look, but were not unduly worried.

The next stop is to see the senior trials nurse who takes four vials of blood, my temperature, weight and blood pressure. Whoops, 145 over 92 is a bit high, maybe the result of my worry about the day! My nurse is lovely, and looks after me so well, answering questions, putting me at ease, making sure that the day runs smoothly. We talk about any changes that I may have been aware of, and I tell her about my tiredness, constipation, and a few spots around my mouth and nose. We also discuss the lymphoedema in my leg, and the great results that are being achieved with the weekly massage sessions.

The final appointment of the day is with the oncologist, who starts with a look at my left foot, the ‘mole which demands awareness’ on my ankle, the glands behind my knee and in my groin, and finishes with the tapping on my back ~ not sure about the last bit, but lots of doctors do this in films!!

I wait for my new pots of pills to be dispensed by the pharmacy, and we are done for the day. Arriving home at 6pm, it has been a long ten hours, but all seems good as I begin my third month on the trial.

And I’m still no further forward in knowing whether I’m in possession of the real drugs, or the placebo. But, the intensive monitoring is certainly very reassuring. Big smile, deep breath, and relax. See you in a month!

Feb28

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.

 

Feb20

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.

Feb11

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!

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.