Monthly Archives: December 2013

Appointments ~ all change!


Tuesday 31st December

The trials nurse from Exeter rang three times today ~ she joked she felt like my stalker! What she was doing, was trying to arrange all my appointments into as few days as possible. And I think she’s succeeded.

This Thursday I have a CT scan, an ophthalmic review and an ECG, all at Exeter hospital.

The following Monday I go to cardiology for an Echo cardiogram, then oncology for bloods and obs, and finally to surgical out-patients to visit with my plastic surgeon for an eight week review following surgery.

A week Tuesday I have an appointment at the Pigmented Lesion clinic for a full dermatological check-up. This will be followed by a visit to the trials nurse for more blood and obs, an appointment with my oncologist, where ‘randomisation’ takes place, and I’m issued with my first course of medication. Combi-Ad. Things are beginning to get serious.

I also have appointments closer to home as well, with the lymphoedema nurse, the occupational health officer, and at the local surgery for a pap smear.

I am entering new territory, feeling rather apprehensive, a little scared, but oh so hopeful and positive for what lies ahead.

As 2013 comes to a close, I will awake tomorrow assured that all my consultants, specialists, doctors and nurses all want the very best for me.

And I’m with them on that one! Bring on 2014, I’m ready to fight for my health!

Check up with the Macmillan nurse


Monday 30th December

Today I have an appointment with the lovely Macmillan nurse in Truro. We talk for almost an hour. She checks the lump at the top of my leg, and is happy that it hasn’t become any worse. She says it is no longer infected nor cellulitic, but slowly repairing itself, the blood clots breaking down and being absorbed.

My actual scar is healing well, and looks neat and tidy. She says I should be pleased with this.

We talk further about what to look out for in the future: lumps, bumps and discoloration, mostly on or around the primary mole removal site on my foot, but I must also check my left leg quite scrupulously.

She wishes me well as I begin the medical tests later this week, and tells me to get in touch if I have any questions, queries, or just want a chat.

When I arrive home there is yet another appointment for me in Exeter! On Tuesday. With the Skin Lesion consultant. Mole mapping, (and removal ~ be prepared for a four and a half hour visit, if we have to cut out any nurglies ~ no the letter didn’t say that, but it may as well!!). So that makes trips to Exeter on Thursday, Friday, Monday and now Tuesday. Great planning!! Still, I knew I was going to be very, very closely monitored.

A wonderful Christmas break


Friday 27th December

This Christmas we decided to take a break in Center Parcs, Longleat Forest. Myself, husband, elder son, younger son, girlfriend, puppy, and my mum travelled on Monday in two cars. The weather was absolutely atrocious ~ rain, wind, flooding, traffic jams ~ but we finally made it by early afternoon.

We had two ‘Woodland Lodges’; very comfortable, with welcoming log fires. Having unpacked and settled in, the three youngest went off to the swimming pool for some fun in the dark and the rain! The pool is kept at 31℃, and has an outdoor section of flumes and rapids, all lit up with Christmas lights.

Christmas Eve, and we are exploring the Village Square, complete with ‘singing reindeer’, ‘snow covered’ Christmas trees, sparkly twinkling lights everywhere, and a pen full of real reindeer with marvellous antlers. I am brought down to earth when my mobile phone goes off, and I have a call from the trials nurse! Really, Christmas Eve!! Oh well. She informs me that I have two appointments lined up in Exeter on the 2nd and 3rd of January. The first for a CT scan, and the other for an Echo Cardiogram. She apologised that they were on two consecutive days, but apparently different departments don’t ‘talk’ to one another!! Hmmmm.

Anyway, having digested her news and thought about the logistics of two trips to Exeter in two days, four of us are off on a morning horse-drawn carriage ride. The horse has sleigh bells, the ‘driver’ is decked out like Santa, ably assisted by a cheerful ‘elf’. The weather today is perfect ~ crisp with beautiful blue skies.

I am able to visit the various areas of the park using the landtrain, which is wonderfully decked out with holly and baubles. By mid-afternoon I am ready to return to our lodge with my mum, whilst the rest spend an hour ten pin bowling. My leg becomes rather swollen unless I am able to sit and elevate it.

(It is now exactly six weeks following my surgery, and I still have to have a plastic drain bag stuck to my leg. It really is becoming quite tedious now. I have a hard lump below my scar, that remains red and bruised. I continue to take antibiotics. I do wish things would settle down and let me behave normally.)

Christmas Day, and Santa has visited overnight, leaving a vast array of gifts under the tree. We spend the morning unwrapping, whilst the massive turkey cooks slowly in the oven, spreading a delightful aroma throughout. Before we eat, the young ones go out for a walk with the puppy. As we sit in the lounge, looking out of the French windows, we are visited by a deer, who comes down the bramble covered bank, almost onto our patio. A little later a couple of grey squirrels scamper in front of us, and a robin redbreast perches on the barbecue. A delightful array of festive visitors! Soon the turkey, potatoes, broccoli, carrots, stuffing, sausages in bacon, parsnips, gravy and cranberry sauce are all ready! Champagne is poured, and we sit down to a feast. In the afternoon the young ones take the puppy for a walk, whilst I sit on the sofa, watching both the crackling log fire and whatever happens to be on the television.

On Boxing Day the non-cyclists catch the road train to the Plaza and enjoy a warming Starbucks and look around the shops. The four active members of the group then went off to outdoor Archery, leaving my mum and I to people-watch, and enjoy afternoon tea in yet another coffee shop! Younger son and girlfriend then went to collect the puppy from their lodge, handed it over to husband, mum, elder son and I, whilst they enjoyed a couple of hours in the pool. We walked slowly down to the lake, and up the other side to our lodge. It was dark when we arrived, so a couple of logs were thrown on the fire, six baked potatoes put in the oven, and cold turkey, cheeses, pickles, beans, and more Champagne were laid out on the table. The swimmers returned, leftovers eaten, champagne quaffed, and Christmas pudding savoured with spoonfuls of brandy butter. (It was on this day that I decided not to stick the plastic drain bag onto my leg. Very little fluid was draining out, so instead, I used a dressing plaster; much more comfortable and unobtrusive).

Our final morning saw us all clearing up, packing, and loading up the cars. We had to hand the keys back in by 10am. A hearty breakfast was served in one of the Plaza bistros, and then we hit the road for the long drive home.

Our Christmas break had flown by, oh so quickly, but what a wonderful, family time we had.

Three nurses’ telephone calls


Wednesday 18th December

Yesterday we left Exeter and drove to Plymouth where we spent about four hours Christmas shopping. I took it slow, stopping for coffee breaks and lunch, but by the end of the day, my foot, ankle, calf, knee and thigh were incredibly swollen. Up until now, my only exercise has been bursts of about twenty minutes, going from the house, to the car, to the local supermarket, and then sitting in a coffee shop.

So on Wednesday I didn’t get out of bed. The swelling of my left limb was quite scary, and I didn’t want to risk any further problems. I lay there, with my leg elevated, and dozed for most of the day.

The first phone call I received was from one of the Macmillan nurses asking how I was doing, and whether I had made a decision on the Truro trial for Brim8 (vemurafenib). I apologetically declined, stating the very frequent monitoring, increased side effects, and the fact that all I had read made the Exeter trial, Combi-Ad, the more preferable. She was very understanding, and thought that would be my decision anyway. She also made an appointment for me to see the other Macmillan nurse after Christmas.

The second phone call I took was from the trials nurse in Truro; she wanted to know my decision. I felt a little bad declining their offer, but she too was most understanding.

Finally, I was called by the lymphoedema nurse at the local hospital in Hayle. We organised an appointment for later in January, where she would show me lymphatic drainage massage to control the swelling of my leg, and when she would take a lot of measurements of my leg, ready to have garments fitted. ‘Garments’???  Oh, those wonderful support stockings that guard against lymphoedema.

Well, anything that helps me return to some semblance of normality, I suppose I will have to accept. Trials, tests, monitoring, travelling, even support hose ~ if I value my life, I will do as the experts direct me.

I sign up!



Monday 16th December

Just over two hours after leaving home, we are being seen by a lovely trials nurse at the hospital in Exeter.

Today is the day I sign my body over to GlaxoSmithKline.

We are taken to a very comfortable consulting room and the nurse goes through the different tests I will be put through before I get the go ahead to take part in this trial. A complete physical examination. These include CT scans, MRI scans, electrocardiogram, echocardiogram, vital signs, blood tests, eye exam and a pregnancy test!
I need to be ‘randomised’ before February 4th.

These are the details from the trial documentation:

“A Study of the BRAF Inhibitor Dabrafenib in Combination With the MEK Inhibitor Trametinib in the Adjuvant Treatment of High-risk BRAF V600 Mutation-positive Melanoma After Surgical Resection.

This is a two-arm, randomized, double-blind Phase III study of dabrafenib in combination with trametinib versus two placebos in the adjuvant treatment of melanoma after surgical resection. Patients with completely resected, histologically confirmed, BRAF V600E/K mutation-positive, high-risk [Stage IIIa (lymph node metastasis >1 mm), IIIb or IIIc] cutaneous melanoma will be screened for eligibility. Subjects will be randomized to receive either dabrafenib (150 milligram (mg) twice daily [BID]) and trametinib (2 mg once daily [QD]) combination therapy or two placebos for 12 months.

Primary aim: Relapse-free survival (RFS)
Secondary aim: Overall survival (OS) of dabrafenib and trametinib as a combination therapy versus placebo; approximately 5 years;
Distant metastasis-free survival (DMFS) of dabrafenib and trametinib as a combination therapy versus placebo; approximately 32 months;
Freedom from relapse (FFR) of dabrafenib and trametinib as a combination therapy versus placebo; approximately 32 months;
Safety of dabrafenib and trametinib as a combination therapy in the overall study population; approximately 5 years.”

So, this is what I have signed up for.
It really is frightening and scary territory for me.
Having read a lot about this trial, and spoken (via the Internet), to people already on the trial, there seems to be a lot of hope and positivity for it.
Without help and advice from these people I would be walking a lonely minefield of ignorance

From the oncology waiting room, I then move along to the one at surgical outpatients. We have about a forty five minute wait, but are then called to one of the consulting rooms. It is almost five weeks since my plastic surgeon operated on me. The scar is incredibly neat, and healing well. However, I still have the drain bag attached, and my lumpy, red cellulitis is a pain in the neck! Apparently it’s all normal-ish . . . . the drain fluid is a straw colour, a good sign, but the hard, half-grapefruit-sized lump is an unwanted side effect. As I have no lymph nodes on the left hand side, lymphatic fluid has nowhere to drain, so it collects in pockets, and sometimes becomes infected, resulting in cellulitis. Oh joy! I must keep the bag stuck to my leg, and am given a new, two-week dose of broad-spectrum antibiotics.

My surgeon is great, and really easy to talk to about any problems or fears I may have. I am told the swelling will go down eventually, and cosmetically, I will have a very discreet, tidy scar. I am due to see him again in the New Year for a two month review.

Another day. Another trial.



Thursday 12th December

Another long drive up to Exeter today, this time, to visit with a second oncologist to discuss a second drug trial in two days! Unlike the information from yesterday, this one combines two drugs: dabrafenib and trametinib, but alike, in that it is double-blind ~ drugs vs placebo, no-one knows if you are taking the drugs or not.

My appointment was for 3:45pm, but because of the horrendous parking situation, we rolled up with an hour to spare. Both of us are becoming quite good at sitting in waiting rooms! We finally went in about 4:10pm. Firstly we spoke to the trials nurse for about five minutes, then the Macmillan nurse for about ten minutes. She wanted to check my wound, drain and the extent of the infection and the cellulitis ~ it is normal apparently, following a groin dissection, but she did sympathise with me, and the pain and discomfort I was having.

Then they both left . . . and we waited and waited and waited . . . . . for almost an hour, my husband and I were in that room on our own!!!! Staring at the walls, opening the door, looking out of the window. The oncologist finally showed up about 5:20pm, apologised that a colleague had had a bicycle accident, resulting in broken bones, and that had messed up his schedule.


Anyway, we spoke for about 50 minutes about the trial ~ the drugs, possible side-effects, scans, tests, travelling to Exeter, emergencies, signing of the consent form, and interactions with my morning pill-popping of various vitamins, minerals and supplements

He said he would get the trial nurse to phone me to talk about all the pills I take, to make sure none are on the prohibited list ~ maybe turmeric, cinnamon and resveratrol, and then we’re good to go, to start the initial battery of tests, probably in the new year.

We did come away feeling quite positive, despite the loooooooong wait!!!!
We eventually exited the building at ten past six, arriving home about 8:30pm, in the end.

I believe my mind is made up, and I will go with the newer Combi-Ad trial, with slightly less side effects, and not as much scrutiny via relentless full body, invasive tests. Even if I get the placebo arm of the trial, I will be very well looked after, plus I won’t suffer the side effects ~ hmmm, sounds like a good plan to me!

A shower. A bag. A trial.



Wednesday 11th December

Had a shower this morning, first time in four weeks! Oh my goodness, how wonderful to feel really clean!!! Up until now I have been making do with a ‘sink wash’, so I wasn’t really smelly, stinky or dirty! As I had a waterproof dressing over the wound from where the tube exited my leg, I thought all was OK. Whoops, no it wasn’t. The dressing became waterlogged, and then I began bleeding/weeping from the wound. Up until that point, I thought that the hole had almost sealed over, and everything had dried up. Wrong! For some reason I had begun to drain fluid again ~ maybe the warm (certainly not hot), water from the shower had caused this. Anyway, I couldn’t really stem the flow, and used up three dressings before it seemed to slow down sufficiently for the thing to stick, and stay in place!

So, an early, early appointment at the hospital in Truro ~ I was the first one in ~ just for a review of my blue/black/red inner thigh. The cellulitis that had decided to form at the top of my leg was painful, especially when trying to sit down, or get back up again.
Really, the nurses agreed that I am still waiting for the antibiotics to kick in properly, it has been barely 48 hours, so it was no worse, and maybe a tiny improvement with the swelling/redness could be seen. The Macmillan nurses thought it best that as I was still leaking/bleeding, the sticky-on drain bag had to be put back on ~ thought I had seen the last of the pesky, dangly bag!!

I was then taken over to see the oncologist in a different building: a waiting room full of people, cheerfully given a coffee, and then we went straight in to his consulting room!!!!
We talked about the trial he is running, and have come away with more paperwork!!! This one is again a double-blind trial: drug vs placebo. The drug is Vemurafenib, and has shown amazing results on Stage 4 patients, but there are side effects.

What to do, what to do?
We are going to Exeter tomorrow, to their oncologist, so will have to make a decision soon. Such a dilemma . . . . .
1. Truro trial
2. Exeter trial
3. Do nothing.

Will have lots to think about by the end of the day tomorrow.
So much uncertainty and confusion!!!

Another mad dash!


Monday 9th December

Having gone to our local hospital on Friday, we were back again this morning for another emergency visit!!! I was seen immediately by the specialist cancer nurse, and a consultant. The swelling/redness/pain/hard lumpy feeling is cellulitis 😦 This can become dangerous if left, and lead to septicaemia.

So I am now on a mega dose of penicillin, 2000mg a day. Hit it hard, and it should go away!!

I hate feeling like this.

But, some vestige of good news: the plastic drain bag is no longer stuck to my leg. There is still an open, exit wound, where the drain tube came out of my leg, but this is slowly beginning to close up. The ‘stuff’ that should have been draining out is further up my leg, which has now become infected ~ oh joy!!

Anyway, back again for a review on Wednesday morning. If there is no change, or the bruising and redness have increased, then the ‘lump’ may have to be drained off using a fine needle ~ not a pleasant prospect!

Still, I can’t fault the service; I have been seen, at the drop of a hat, every single time 😉 The nurses are amazing, and take time out to talk and reassure you.

Hopefully normal service will be resumed soon.

A quick dash to the hospital !


Friday 6th December

Well, I didn’t expect a rushed visit to Treliske today!!

Having seen my plastic surgeon on Monday in Exeter, and told the drainpipe in my leg was not ready to come out (still losing too much fluid), I phoned the Macmillan nurse in Truro today.

The top of my thigh really was beginning to feel very ‘wooden’, hard and bruised. She said to come along straight away!!! At Truro they don’t like drains being in for more than two weeks, mine was there for three and a half weeks.

I saw the nurse immediately, who then brought in a consultant, and a phone call to Exeter made. Yes, the tube could come out!!!

The nurse thought the bruising and hardness was due to a blood clot or a haematoma. The tube was unstitched, and came out quite freely. It was blocked!!! Not allowing the blood and lymphatic fluid to drain away as it should. She then massaged, or ‘expressed’ the area, and lots of ‘stuff’ came out, and it really did lessen the hardness of the tissue below the surface of my skin.

I now have a plastic drain bag stuck to the inside of my thigh, carefully placed over the hole/open wound, but no invasive plastic tube!!! Yay, so much more comfortable!

The consultant drew a line in black pen, showing the outline of the hardness below the skin ~ if it spreads any further, I’m to get myself back there as quickly as possible.

I then asked the Macmillan nurse about possible drugs trials at Truro, and she said she would put things in motion for me to see the oncologist here, instead of having to travel all the way to Exeter on a monthly basis. We’ll see.

So, I end my day, minus the invasive plastic tube inside my thigh. The area still remains bruised and swollen, but hopefully now any further fluid can drain out properly, and the wooden feeling will subside.

A really long day!


Monday 2nd December

Have just returned from a long day trip to Exeter.

I had an appointment at the dressings clinic, to see whether the drain in my leg was ready to be removed ~ no, not yet, as I’m still losing too much fluid. So plastic bag changed, and the site cleaned up.

Hmmm, another week of dangly bag between knees!

There was also a Macmillan nurse there who had a printout of my results, following the groin dissection three weeks ago: of the four further nodes removed, only one more contained melanoma, and that was ‘encapsulated’, no spread to the surrounding tissue which had also been removed. Three out of six, in total.

Does that sound good, or maybe OK?

She then spoke for a bit about the Combi-Ad drugs trial, I have been offered.

My wonderful plastic surgeon, who was conducting his own clinic, then popped his head round the corner, to say hello and check the wound, scar, red bruising, hot feeling, wooden thigh, that I now seem to possess! All seems normal, he’s happy with the progress being made, and will now refer me on to an oncologist, where I will find out more about the trial.

So, all in all, not a wonderful day, but not dreadful either.