Category Archives: Lymphoedema

Friday feelings

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Friday 17th July

Having had my weekly lymphoedema massage appointment, where I lay blissfully enjoying the nothingness of total relaxation, we spend an hour on the beach watching your brother kite surfing.

He is becoming quite good, and really enjoys being out in the water. His girlfriend, who is still on antibiotics, has to take it easy for another week or so, otherwise she would be in the water too. She is a kite surfing instructor, and has passed her passion for the sport onto your brother. He comes out of the sea briefly, to greet us, with a big smile upon his face, then goes straight back in again, whizzing up and down the bay.

I think you would have been rather impressed by his competence, and proud of him, too. He hasn’t long taken up the sport, but seems to be a very quick learner.

Two horses were cantering along the beach, at the water’s edge, whilst we were there. Now that is something I know you would have loved to do this afternoon. Splashing about in the sea, with the sun and wind blowing against your face, whilst on horseback.

Sweet Angel, we miss you so.
We’re always thinking of you.
Ride free and jump over clouds.
Smiling at whatever you do.

Love you forever xxx

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A present from America

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Wednesday 8th July

“He’ll be with you
in the places you go,
in the things you do…
in your heart.”

Returning from my weekly lymphoedema appointment, I picked up the post from the floor by the back door. Our lovely friends in America, whom we have known since 1994, sent a card of condolence, and inside was a wonderful silver heart necklace for me. So kind, thoughtful and generous.

Our friends live in South Carolina, and are gracious hosts to us, whenever we make our annual visit. Dinner parties have almost always ended with the most marvellous pecan pie, with an extra one having been made for us to enjoy the following day.

I know these people will really miss you being around, when we do eventually return to South Carolina. They loved you, and your accent, and were completely understanding of your sometimes challenging behaviour.

Right now we have no summer holiday plans. Maybe we’ll give America a miss this summer, I just don’t know. It doesn’t seem right at the moment to book our holiday without you. For twenty odd years our planning was centred around you two boys. When your brother decided it was no longer cool to go on holiday with mum and dad, it was just the three of us. And what fun we had, and the miles we covered in our hire car. South Carolina, through Georgia down to the tip of the Florida Keys, not forgetting an extended stay in Orlando so that you could enjoy the theme parks.

Will we follow the same road again? I’m not sure we will. You allowed us to have fun, year on year, acting like big kids. Being a child-like thirty year old, we would spend most of our Orlando time in the theme parks, going on each and every one of the rides, watching parades and fireworks, playing in the water parks, riding on airboats, watching movies at the IMAX, playing crazy golf, buying books and DVD’s from Barnes and Noble or Books a Million, or eating pancakes and maple syrup. You let us be a huge part of your extended childhood, and for that we are so grateful, and yet left so sad now.

There are so many memories and reminders of you, everywhere.

One day, I’m sure, we will go back to Orlando, but not just yet. It’s too soon.

We miss you more each day.
Love you forever.
Sweet dreams Angel son xxxx

Another check-up

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Monday 6th July

Here we go again ~ another 250 mile round trip to the hospital where I am taking part in a clinical trial using a combination of drugs in the adjuvant treatment of stage 3 malignant melanoma.

Today I see the most wonderful plastic surgeon who carried out a left groin dissection in November 2013, to remove lymph nodes at the top of my leg. I have a 20cm scar, which has faded almost to nothing, and a couple of smaller scars where the drain tube exited further down my thigh. He was pleased with the healing, and asked about the groovy support stocking and lymphoedema that I now have. I said it was a small price to pay if he had removed all the cancerous cells.

The drive home was unusually slow, with lots of holiday traffic, caravans, lorries, tractors and wide loads on the dual carriageway. We took almost an hour longer than our normal two hours. Plus the rain didn’t help matters.

We stopped in at the cemetery. No one else was about; it was a bit grey and wet. We talked to you as we always do, whilst tidying up the flowers. It still doesn’t seem real. It doesn’t seem right or fair, that my cancer treatment is working for me, and yet your treatment failed you. Why? Why? Why?

Missing you so much today.
Love you forever.
Precious Angel.
xxxx

A couple of appointments

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Friday 26th June

This morning I have my annual appointment with a consultant dermatologist. A whole body examination to look for suspect moles ~ none found. (She doesn’t think the one on my arm looks dodgy at all ~ the one I’m due to have removed next week. Hey ho). Plus a check for any swollen glands ~ none of those either.

We talk about our elder son, and she expresses her shock and kind condolences. She remembers how we would talk about him, our travels, and the fun we used to have together. It was difficult to talk, and we felt sad. All over again. Explaining what has happened never gets any easier.

This afternoon I have an appointment with my lymphoedema nurse for a massage session on my left leg. This is most relaxing, and necessary to move the lymph fluid up, and away from my knee and thigh. As I no longer have lymph nodes at the top of my leg, I have these weekly massages to reduce the swelling. I still have to wear a ghastly support stocking though, but it certainly does it’s job. Alluring it is not.

Later in the day, once the rain has stopped, we come to the cemetery. The sky has cleared, and we watch for vapour trails of the aeroplanes overhead, imagining that you are being flown away on holiday. By now you would have been so excited, with only about a month to go before we flew off to America. But not this year. Not yet.

Night night sweetie pie.
Sweet dreams my Angel.
Love you forever.

Month 18 results

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Tuesday 23rd June

Speaking with my melanoma trials nurse this morning, I can report that I am NED ~ no evidence of disease. This follows a large battery of tests that were performed two weeks ago. That should be a good thing, right? No metastasis of the cancer. Everything looks normal, with no change to any internal organs.

I should feel over the moon, happy at least, or a huge relief. No cancer in my body. Hip hop hooray.

On the one hand, yes, of course I do, a huge weight has been lifted off my shoulders. For another three months at least, when I go back, and the scanxiety begins all over again.

I’m trying hard not be negative here. But it’s difficult.

Because on the other hand, I do feel “Yeah, so what?”, shrugs shoulders, curls lip. “Whatever”.

You see, melanoma is a sneaky disease, it can lay quiet for months, even years, before unexpectedly exploding back on the scene. It’s not just a case of cut it out, it’s gone, you’re good to go.

I already know that the cancerous cells spread from the mole on my toe, through my lymphatic system, up to the nodes at the top of my leg. This follows a number of surgeries and a skin graft. Despite being told the nodes were encapsulated, there is always that niggling bit of doubt, quietly knocking on the door, at the back of my mind. It’s a bit of a deadly lottery really.

No, melanoma needs much vigilance: perhaps a change in diet and lifestyle, sun awareness and proper sunscreen use. And very careful monitoring of your skin.

So yes, I am feeling positive that I am NED, but I won’t let my guard down. Gone are the days of beach tanning to a leathery brown, my diet now contains lots of fruit and vegetables, and I try to exercise daily by walking, despite the lymphoedema in my leg. Oh, and I use sunscreen every day, too.

(Thinking of my darling boy in heaven, whose cancer was diagnosed too late.
I so wish things had been different.
Love you, love you, love you xxxxx)

(Delayed) month 15 clinical drugs trial

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Tuesday 14th April

Off to Exeter hospital today for a battery of tests that I should have had done last month.

I have Stage 3c malignant melanoma, the deadliest form of skin cancer.

A mole on my left foot began causing problems just over two years ago, so I had it removed, complete with skin graft. Following a sentinel node biopsy, I learnt that cancerous cells had spread to my lymph nodes at the top of my leg, so I had a left groin dissection in November 2013, leaving me with lymphoedema in that leg, but wearing a support stocking does help tremendously, although it does look ghastly.

For all of last year I was on the double-blind Combi-Ad clinical drugs trial, by GSK. An adjuvant therapy combining Dabrafenib and Trametinib. Monthly hospital visits, with scans, ECG, heart Echo, eye exams, dermatology, haematology and oncology appointments.

Now that I’ve completed the “drugs” part, I’m being monitored every three months for the next two years, then six-monthly for two more years after that. Today I start with dermatology, then blood and obs ~ my blood pressure was a bit high ~ then a CT scan, and finally a visit to the oncologist.

I did find the day very draining, as our elder son would most often come to the hospital with us, and knew the nurses there very well. So it was quite an emotional time, explaining all that had happened. Really quite rubbish to be truthful. Especially since the last five months or so, we have been totally focused on him, and the testicular cancer attacking his body.

Plus, going through the scan, all I could think of was my son, and how I wish his scan had shown a problem that could/should have been spotted or fixed.

The oncologist had a quick glance at my scan images, and all looks good, apart from maybe a slightly swollen thyroid gland. But I will have to wait for the senior radiographer’s report and results from the blood tests. But he didn’t seem unduly worried.

We drove home mostly in silence. Deep in thought. Thinking. If only….. What if…… Why……

We did stop by the cemetery though, to talk with our son, to let him know how I’d got on today. I know that sounds strange, but we find it comforting, and actually necessary to visit each day. To water the flowers, to touch the simple wooden cross, as if somehow we’re connecting with him.

It really doesn’t seem right. I just wish he was back here with us. Why did his treatment fail him? Will we ever get an answer to that question? Will we be told exactly what went wrong?

We have too many unanswered questions going round and round in our heads. Why, why, why?

Back to school

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Tuesday 8th September

I haven’t taught since May 2013; fifteen long months ago. I return to work today, and am amazed and heartened by the lovely welcome I receive. So many students stop me and want to talk. They want to know how I am and whether I’ll be teaching them again. Not one ‘saw’ my leg in its compression stocking, nor pointed at it or asked why I was wearing the garment. I had been dreading the first few days, but everyone was so supportive and caring.

My timetable gives me Mondays off, and every other week, Fridays too. It is far less stressful and really quite a relief that I don’t have to stand all day long.

Trial ~ Month Eight

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Tuesday 26th August

We reluctantly fly back across the Atlantic on Sunday night, arriving bright and early Monday morning. Returning to our car, loading all our luggage, we then set off for Exeter where we spend the night, catching up on our sleep.

In the morning my first appointment is at dermatology, where the faint redness can still be seen, as a result of the cellulitis. Thank goodness for the antibiotics that I took with me! No other cause for concern is noted, following a full body check.

Then it’s onto the ward where I see a different trials nurse for blood and obs (my usual nurse is on her summer break). Everything is stable and wonderfully normal. Big sigh of relief!

The final appointment is with a different oncologist from my usual one (also on vacation). Pots of pills handed over, and we’re soon on our way home.

After two long days of travelling, it is so good to fall asleep in my own bed.

The end of Summer, turns into the beginning of Autumn: new season, new hope.

Our holiday is nearly over

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Tuesday 19th August

And so our summer journey comes full circle as we return to our starting point. Back in North Myrtle Beach, and the weather is beautiful; swimming in the ocean which is only a few degrees lower than the air temperature; hiring loungers and an umbrella on the beach; making sure we’re covered in high factor sunscreen; wearing hats and drinking lots of water. We visit with friends and are treated to southern hospitality at its best.

This summer break has been different in that we couldn’t visit all the locations we would wish, because of the four-weekly hospital appointments I have. My three days in bed with cellulitis really brought home to me how this disease now affects my life. I will no longer laze all day in the sunshine, now seeking out shade and regularly using sunscreen. But, we did have a wonderful, restful vacation. I will not let cancer beat me; fun is still very much on the agenda!

A few days in Hilton Head

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Sunday 17th August

Five hours North of Orlando is the wonderful Hilton Head Island.

We arrive soon after lunch, unpack a few things, and go and find some shade around the pool. Blue skies, warm seas; perfect. The pelicans are flying overhead, in formation, and a guitarist is playing happy, sunny, beachy music at the tiki bar.

We are here for two nights, and can really relax. No rushing around theme parks or visiting crowded shopping malls. HHI is an amazing place to just re-charge batteries and feel no stress at all. My leg likes this place! Lots of reclining on beach chairs and taking it easy. Even though there is a weather alert, a heat advisory, for temperatures of 98℉, we love the sunrises, sunsets and long lazy, blue-sky days, filled with warmth. The redness at the top of my thigh, from the cellulitis, is still there, and I’m continuing to take the antibiotics. But, the balmy weather and island lifestyle are most welcome.