Friday 16th March
.
Grief is universal
It’s experience
So very personal
.
Today I’m purposeful
And yet tomorrow
Totally irrational
.
Seemingly practical
But I’m really
Absolutely emotional
.
Sometimes sociable
Could be seen as
Quite unapproachable
.
It’s because I miss you my darling
Everything has changed
I am not the same
xxxxxx
Wednesday 3rd December
Having had two one-litre bags of saline to hydrate his body overnight, my son is now ready to begin his chemotherapy treatment plan.
It’s 11:40am, and he starts with ten minutes of Vincristine, followed by a hydrocortisone flush. Bleomycin for fifteen minutes, Mannatol for ten, finishing with six hours of Cisplatin.
He is so patient and accepting, he doesn’t moan as the clear fluids are introduced through the central line in his chest. He eats and drinks as normal.
We have two sets of visitors today: firstly his brother, girlfriend and schoolfriend. They stay for quite a while, chatting and keeping us company. Later on in the afternoon my mother and sister pop in for a couple of hours, bringing a massive basket of fruit and cards from well-wishers.
It is lovely to see everyone, but by the end of the day our son is beginning to feel extremely tired, and just wants to sleep.
Throughout the night saline is attached to the drip, ready for day two tomorrow.
It is scary to think of all the toxic fluid that is being introduced to his body, but if it means the tumours are zapped and killed off, then that is only a good thing, isn’t it?
Monday 6th January
My second trip to the hospital in Exeter sees me undergoing another batch of tests for the Combi-Ad trial.
My first stop is at Cardiology where I am to have an Echocardiogram to check the structure of my heart and it’s pumping capability. The technician explains it is similar to an ultrasound scan whilst pregnant. I have to totally strip off my top half, and have the sensor, with gel, placed at various positions around my heart. The three-dimensional imaging is amazing. Many screen shots are taken, measurements made, and numbers crunched. The whole process takes about half an hour, then I wait for the printout to take with me to the trials nurse back in oncology.
After a ten minute wait in oncology, I am taken into a consulting room with the senior trials nurse. She is great, very friendly and willing to listen and answer all my questions. She remarks that I have super veins, and then proceeds to take a number of vials of blood.
‘Observations’ are next: blood pressure, temperature, pulse, height and weight. Oh my, I have gained a couple of pounds in weight, and lost an inch in height!! Diet time and I need to improve my posture and do some stretching!
I am then taken into another private consulting room and have a full physical check with one of the trial doctors. (I have to remove all clothing apart from my bra and vest top!) He checks my visual response to his moving finger; he asks me to frown, screw up my eyes and blow out my cheeks; he checks the strength in my neck and shoulders; he listens to my chest and back; I have to say “aaahhhh”; he feels my stomach; and lastly I have a rectal exam. I had been really, really dreading this particular part of the exam, but it was painless, and soon over.
My husband and I then take time out to have some lunch and a cappuccino before the final appointment of the day with my plastic surgeon. (I have to remove my trousers this time!). It is eight weeks tomorrow since my surgery. The hardish, red, black lumpy lump at the top of my leg is unsightly, but not sore. A seroma is a nasty side effect of the operation, but the surgeon is not unduly worried. He could drain the fluid using a fine needle, but that could introduce infection, and in all probability would fill up again. He is pleased with the scar healing, and will see me again in three months.
My first appointment was at 12:30pm, the last at 4:40pm, but I didn’t go in til 5pm. We drive away just after five thirty and arrive home at a quarter to eight.
Another long day, but ultimately it will be so worth it. I am due to come back on the 14th for more bloods, obs, a smear test, a check with the oncologist, and then to be given my four weeks worth of drugs. £7000 worth!!!
Things are looking positive for a much better year.
Thursday 2nd January
We set off early for our 100+ mile journey to Exeter, arriving about 11:30am. Husband drops me off and continues into the city with elder son, (no point staying, as they wouldn’t be able to accompany me during the testing!).
My first stop was to oncology where I had to pick up a trials worksheet, and other paperwork.
I then walk down the hospital’s long corridor to Medical Outpatients. I didn’t even reach the reception desk, but was intercepted by a lovely voluntary worker who asked where I needed to go. She took me to a room marked ECG, knocked on the door, and told me to take a seat: the door opened before I sat down! A number of sticky pads are attached to my ankles, tummy, chest and neck ~ no more than ninety seconds later and it’s all over. The only data I understand from the printout is my heart rate: 65 bpm, not too bad, I suppose!
My next move is back along the corridor to x-ray for a CT scan. Here, I have a wait of about ten minutes, then I’m ushered down the department hallway to a cubicle, and told to strip off, and put on a wonderfully fetching hospital gown. My name is called, and into the room I go. Lying down on the couch I have to clench and unclench my fist with a tourniquet tightly around my upper arm. A needle is inserted into the vein of my right arm, in the crook of my elbow and secured in place. I then have to raise both arms above my head; as the nurse leaves to go to the safety of an enclosed ante-room, my back and forth journey through the big white doughnut begins. As the radioactive dye enters my system I get a metallic taste in my mouth and a warming sensation. Thorax, abdomen and pelvis are first to be scanned, followed by head and neck. The whole procedure is over in less than half an hour, the nurse removes the line from my arm and sticks a dressing on. Thanking her, I leave, get dressed and go and find the coffee shop! Not having eaten breakfast, but just the requisite 500ml of water an hour prior to the scan, I was looking forward to a cappuccino!
My last port of call was to the Eye Unit. When I arrived at reception there was no record of my details on the system. A quick visit to one of the consultants, and he knew why I was there, and what tests to carry out. A standard eye test was followed by some strange drops into my eyes. Two vials were mixed together, forming a fluorescent yellow liquid ~ and it did sting ~ making me cry toxic tears. Various eye movements were called for, as the consultant peered through lenses and shone bright lights to carry out a variety of retinal ophthalmic examinations.
And then, it’s all over for today. Not too much waiting around, nothing particularly painful and everyone so kind and helpful. Our drive home begins, and we are there in time for dinner.
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!
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.
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.
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.
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.
Hmmmm.
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!
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.
The Journey of My Left Foot (whilst remembering my son) 