Author Archives: MeRaw

Aug4

Florida ~ the first week

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Monday 4th August

We leave South Carolina and begin the long drive down the state, through Georgia, and on into Florida. The temperature rises markedly, the skies are no longer grey, and no more rain! We make an overnight stop at Jacksonville, then on to Orlando the following morning. Theme parks, theme parks, theme parks!

On our first full day in Orlando we visit Aquatica, a fabulous water park, where I can relax under a huge parasol, spreading much-needed shade. The river rapids, lazy river and wave pool are visited throughout the morning, each time returning to the shade to reapply sunscreen. Husband and son are much more adventurous, and try out the more thrilling, tube rides!

The next day we are off, bright and early to Sea World ~ always better to beat the crowds! But even at 8:45am, families are streaming through the entrance! It is a blistering hot day, but there is lots of much-needed shade throughout the park. We manage to find good seats for the Shamu show, and spend 45 minutes enthralled by the killer whales and their marvellous trainers. Antarctica too, is a great experience, and a chance to really cool off!

On Friday we drive South West along I4 to LegoLand, a theme park which opened last year. We walk quickly through the miniature cities, and make our way to the water park. It is unbelievably hot! A welcome dip in the lazy river is most enjoyable. Whilst leaving the park I become increasingly affected by the heat, and my husband has to pour ice-cold water down my neck to try to bring my temperature down. When we return to the car, the indicator on the dashboard shows 104℉. Whoa. I have never really been troubled by hot weather, in fact I have loved it. Perhaps it is the drugs I am taking, perhaps the cancer has changed my body somewhat, perhaps I am getting old!

On Saturday we have a break from theme parks and spend time shopping. However, again I am affected by the heat, and have to return to the villa earlier than expected. Wuss!

Sunday sees us at Universal Studios and Islands of Adventure. Again it is hot, and my left leg is beginning to trouble me. So, husband suggests I hire a motorised wheelchair, complete with sunshade ~ it is an absolute godsend. I can move around the parks without getting all hot and bothered, our bags and cooler can go in the front basket, and for some rides, I can jump the queue! Result 😃  We visit the new Harry Potter ride, and are left feeling rather disappointed. It would take three hours to experience Diagon Alley, the lead-up queue to the ride: Escape from Gringotts. We decided to forgo this, joined the single-riders line, and only had to wait forty minutes. The ride itself is a 3D simulator, does not last long enough, and is not frightening at all! A bit of a let down. We then find Platform 9 3/4, and join the Hogwarts Express to be swiftly taken on a journey across the countryside. Despite Harry Potter, the other thrilling rides never fail to excite, and a great day out was had by all.

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.

Jul29

Month Seven

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Tuesday 29th July

Doesn’t time fly when you’re enjoying yourself?

Seven months down the line, and I’m back for my review; just the dermatologist for a skin check, trials nurse for bloods and obs, and the oncologist for an assessment, lastly the issuing of my next batch of medication.

All the appointments go smoothly, everyone is happy, and we leave smiling, thinking positive thoughts.

Our summer vacation can now begin! We start our drive to Heathrow, where we stay overnight, flying in the morning to North Carolina.

Jul7

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.

Jul1

Half way through the trial

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Tuesday 1st July

The alarm wakes us at 5am, time for a quick shower before heading out on the road to Exeter for my six month review.

First stop as usual is with the dermatologist at 9am. Having stripped off, he checks my body with his dermascope, looking for any moles that might have changed colour or grown since my last appointment. No, all is ok, no dodgy looking blobs here!

Moving on to the second hospital, about a mile down the road, I search out my trials nurse who takes my blood pressure, temperature and weight. She also extracts four vials of blood from my right arm, unfortunately rupturing my vein in the process! I didn’t realise until I looked down and saw the blood soaked swab in the crook of my elbow! Whoops.

I then have a CT scan booked, so make my way through the hospital corridors to that department. I have to wait, in the very unflattering hospital gown, for three quarters of an hour. Hmmmm, didn’t like anxious waiting. Feeling very vulnerable and scared. Anyway, when it was my turn, I was put completely at ease by two marvellous technicians. The whole process is not very comfortable, but I’m soon finished and ready to move on.

An Echo is next. I get undressed, ready to begin, only to be told I need to be seen by the technician who carried out the last test. She is in a different room. Across the corridor. I can’t be bothered to get dressed, only to get undressed again, so I wrap a sheet around me, and dash across the hallway into the designated room! It’s a fairly lengthy procedure, looking at the 3D functioning of my heart. Many images are taken and measurements recorded. I wait for the printed report, then move on.

An ECG is next on my list. This is really quick, simple and painless! Strip off, have little sticky pads attached all over, about ten seconds later the data is printed off, and I’m out of there!

A visit to the Eye Department follows, and I do not have to wait too long. A quick sight test, reading those letters from a poster! Then the stinging eye drops are put into each eye whilst the ophthalmologist checks my retinas. I leave the room crying toxic yellow tears, dabbing my cheeks with a tissue!

We then have time for a quick bite to eat for lunch before heading off to the Oncology Department to meet with consultant. After a short wait it’s time to strip off again for a quick feel!!! Foot, leg, groin, pelvis, abdomen, neck, back. All is good. No lumps or bumps here. Thank goodness.

The final trip of the day  us to the pharmacy to collect my issue of a month’s worth of drugs ~ Dabrafenib and Trametinib ~ the Combi Ad trial tablets ~ or maybe they are a placebo.

Who knows?

Whatever; I’m under such close scrutiny with an awesome team, whichever arm of the trial I’ve been placed, I know I have been getting the most amazing care.

We arrive home over twelve hours later, tired, but glad the day is over.

 

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.

Jun4

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

Jun3

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.

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!!!