Author Archives: MeRaw

Off to Torbay Hospital

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Thursday 2nd October

We are off to Torbay tomorrow as my son’s urgent referral to see the consultant urologist has finally come through after almost three weeks. We’re meeting him there, and are going to stay overnight on Friday, look around Exeter on Saturday, do some shopping and home that afternoon.

My results from the CT scan over a week ago came through today as well. A trials nurse phoned to say that they show no evidence of metastatic disease. Phew!!!!! I can breathe again for another three months.

Month Nine

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Tuesday 23rd September

Three quarters of the way through the clinical drugs trial and it’s time to run between two hospitals and many different departments. Dermatology, bloods and obs, CT scan, ECG followed by an Echo, and finally the oncologist.

All starts well, but when I sit down with my trials nurse and chat, I start to feel really anxious and tearful. My blood pressure is silly-high. Scanxiety is setting in. For some reason I am beginning to dread the scan ~ or is it the results that I’m worried about. Irrational fears and thoughts are sending my mind spinning. Deep breaths, deep breaths. Hold it together.

The scan itself was quite routine and I’m so pleased when its all over. Just a week to wait for those all important findings.

Son’s A and E visit

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Monday 15th September

Our son has just phoned us. Having spent all day in the hospital in Torquay, he has just got back to the farm. He has a 3cm cyst in his left testicle which was observed under an ultrasound scan. We had a staff nurse ring at 5pm, to say that he was going to be staying in overnight, and could he be given an anticoagulant injection to prevent DVT, as he would be inactive for a long time. Half an hour later the carer that was with him rang to say he wouldn’t be staying, and they were waiting for the paperwork so that he could be discharged ~ three hours later, and he arrives at the farm, starving, tired, but sounding ok. He has had two lots of morphine, painkillers and paracetamol. He really must have been in pain.

He is now awaiting an appointment with a urologist later this week.

I think he was pretty scared.

Lymphoedema Loss

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Friday September 12th

Having gone back to work, albeit on a reduced timetable, I am very grateful for my weekly lymphoedema massage sessions. Today both legs are measured, and amazingly, my left leg has shrunk compared to the volume of fluid calculated last time. Today it has 827 mls of extra fluid than the right, only 7% bigger! If I remember, last time it was 1.2 litres, so this is good news. I did think that being back in the classroom would present problems, as far as being on my feet for long periods of time is concerned.

My leg is massaged, I lay quietly, totally relaxed. A little peaceful luxury in my day!

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.

 

Last days in Orlando

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Friday 15th August

 I awake feeling so much better, and we decide to drive South West to Tampa, and Busch Gardens. I again hire a motorised mobility scooter, and begin our journey around the park. By the time we reach SheiKra the sky is darkening, lightning threatens, and the rides are closed ~ so, so disappointing! We spend quite a while moving around the park, looking at the various animals, but in the end we call it a day, give up, and begin the drive back to Orlando. I think last year, almost the same thing happened, it absolutely poured with rain as we arrived in Tampa, we didn’t even make it into the theme park, turned around and left! Never mind, the new ride Falcon’s Fury has yet to open ~ there’s always next year!

The weather improves upon our return to Orlando, and we go to look at some American classic cars and hot rods.

Our last day in Orlando is spent shopping and packing. We drive up to the Mall at Millennia and browse the shops in cool air-conditioned comfort. Again there is another spectacular afternoon thunderstorm to end the day and clear the air.

We pack and load up the car that evening, ready for a quick getaway tomorrow morning. It has been a different sort of holiday in Orlando this year, what with the thunderstorms and my cellulitis. Lots of activities having to be curtailed. Still, I think we made the most of it, visiting all the theme parks that we had planned upon, just not as frequently as we would have liked!

Fugly Cellulitis

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Friday 8th August

Today is hot, scorching actually, and we decide to get up early and drive South West to LegoLand. As the park had just opened, the queues were not too bad when we arrived. We made our way through the miniature cities and displays, and on to the water park; locating a huge parasol we parked our belongings and found the wave pool. It was gentle fun, a few hours spent idly reclining on the chairs, or building a Lego raft and drifting around the lazy river. As we leave, son decides he wants to go on one final ride, a rollercoaster, and husband and I wait in the shade. This is where I begin to feel really hot and uncomfortable, and eventually husband has to pour iced water down the back of my neck to cool me down. We arrive back at the car and the dashboard display shows 104℉, no wonder I’m overheating. I think I had a ‘heat episode’.

On Saturday we didn’t go to a theme park, deciding to have a much quieter day, and went shopping instead. Again I started to feel funny, fluctuating between feeling hot, shivering, and nauseous. We had to cut our trip short, drove back to the villa, and I went to bed. That evening I had noticed the top of my leg, underneath the support stocking, had begun to look a bit red and blotchy, but put it down to the excessive heat.

On Sunday we went to Universal Studios, hiring a motorised wheelchair with a sunshade on top. This was an absolute godsend as I was able to rest my leg. I could now move through the theme parks with much ease! We also loaded up the front basket with our bags and a cooler full of iced water. Another benefit was that on some rides I could jump the queue! It was a long day, just over six hours, but great fun was had by all

When we got home later that afternoon, the redness on my leg had become more intense and hot. I suspected cellulitis, so that night I began the two-week course of strong antibiotics that I had prescribed from my GP before leaving home, (thank goodness I had them with me). I also took pictures of my leg, and emailed my trials nurse.

Using my American cell phone I spoke with my trials nurse on Monday morning, and she had already spoken to my oncologist, who agreed that yes, it probably was cellulitis, take the antibiotics, and if the redness spreads, to seek medical help!!!

Overnight the redness had not spread. It’s just really bright, hot and sore, looking quite frightening and scary.

I spend Monday, Tuesday and Wednesday in bed, eating very little, but drinking copious amounts of water. I feel tired, but the sickness feeling and headaches, and the fever have gone.

This is crap.

I hate it.

I thought all was going to be ok.

I’m never bothered by hot weather.

I thought I was invincible.

How stupid am I?

Apparently having lymphoedema makes you more susceptible to getting cellulitis. But this is usually through a scratch or insect bite.

I have neither.

On Thursday it is our thirty second wedding anniversary, and I finally feel well enough to get up, get dressed, clean my teeth, have a shower, and try and look and feel almost normal again. Husband drives to Cocoa Beach, and we have a wonderful celebratory lunch overlooking the ocean.