Category Archives: Thoughts

Plastic Surgeon

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Monday 7th July

Almost eight months following my left groin dissection I have an appointment with my plastic surgeon to check progress. He is terrific, never rushed, and always willing to answer questions.

He is very pleased with the way the scar has healed, leaving just a neat silvery line in the crease  at the top of my leg.

He feels along the scar line for any new swelling ~ there is none!

He mentions that the skin graft on my foot could be made to look a little more pleasing ~ this was carried out by his colleague, using a split-thickness skin graft, and has been left looking a bit lumpy and scarred. I think it best to decline his offer at this moment in time. I don’t want to be out of action, limping and hobbling for a number of weeks ~ I think I can put up with a gnarly looking foot!

We make another appointment for a year’s time!

I had previously sought out my trials nurse to enquire as to the results of last week’s CT scan. I didn’t know whether the results had come through yet. They had…..

All is clear. Nothing has changed. Worry not.

We leave the hospital feeling massively relieved and wonderfully happy. Thank goodness.

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.

A visit to my GP

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Wednesday 4th June

The day after my hospital visit, I have an appointment with my GP. I feel as if I have a shopping list of requests!

Firstly I ask if I’m eligible for free prescriptions ~ all those being treated for cancer should not have to pay for their medications. I’m given a form to fill out, and my lovely doctor agrees to countersign it as soon as I’ve filled in all my details.

Next, I ask if he will prescribe sunscreen for me. Having malignant melanoma, and possibly taking drugs that heighten my sun sensitivity, some doctors agree to issue this free of charge. My doctor has no hesitation, and I’m given a prescription for Factor 50 sunscreen for body, and a facial one too.

Another item on my shopping list is a prescription for strong antibiotics, two weeks worth, to take on holiday. I am becoming increasingly anxious about infections, perhaps leading to cellulitis. A scratch or stray mosquito bite could have serious consequences. Again, my doctor agrees to give me the tablets as a precautionary measure. I’ll take them with me, but only take them if absolutely necessary.

Finally, seeing as I’m on a roll here, I ask if I can have some of the moisturising, softening cream that the dermatologist had given to me. No problem at all.

Fantastic! I leave my appointment with everything I need, all for free. Such an understanding, caring doctor. He takes the time to explain and talk through my fears. A few less things to worry about

Month Five ~ Drug Trial

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Tuesday 3rd June

And off we go again to the hospital for my month five checks. Dermatology first, where everything is deemed to be fine and dandy; I leave with a couple of free sample tubes of moisturising cream. It has become a bit of a ‘knowing smile’ moment between myself and my husband: for the last few visits to the dermatologist, he has always commented that my back seems a bit dry ~ I don’t think it is!

We then drive to the second hospital where I meet with my trials nurse. She extracts four vials of blood from my right arm, takes my temperature, blood pressure, and weighs me.

We then have a break for lunch, and finally have the last appointment with my oncologist. All is as it should be, and I am issued with the next month’s supply of drugs.

All is as it should be! Ha! I wish it was.

I have malignant melanoma. This is not how it should be. Every time I visit the hospital for tests I’m reminded how things have changed. This is now the new normal. Stable is the best I can hope for. So, I build my bridge, and get over it. I must now be as positive as I can, have no regrets and enjoy every single day.

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.

Unemployed

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Friday 25th April

As the summer term at school begins, I must come to terms with the fact that I am unemployed! For the first time in nineteen years!

I had to take ‘sick leave’ last May when my surgeries began: I was on full pay for six months, followed by six months of half pay. That has now finished. Arghhhh.

But all is not lost. The head teacher has been very understanding of my situation, and I return in September, albeit on a much reduced timetable, teaching only mathematics.

I could not end my teaching career with a sick-note. I love my job, enjoy being with the students, helping them to achieve their potential.

“I’ll be back”.

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!

 

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?

 

 

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.

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.