It’s a Happy Landmark Day today and what’s more, I’m in some great company as at least two blogging friends (Bringing up Goliath and In the land of new normal) have been marking “blogaversaries” in the past few days!
Two years ago, after weeks of lying awake at night, dark thoughts and questions swirling around in my head, I took the step of starting this blog. It was important to keep people updated with what was happening, but the key thing for me was to process what was happening to me and the blog was a critical outlet. Like many of my blogging friends, I have now found that this is an important part of my life, particularly in relation to my breast cancer experience. I have gained an incredible amount through this blog, especially some close and special friendships.
I realise that in the past months, there are a number of characters and expressions which I have adopted and coined which have become almost like characters in the blog. They have become part of my life since The Day That Everything Changed. So I thought that a nice way of marking my blogaversary would be to put together a kind of cast list come glossary to fill out the details. I realise that I refer glibly to good old Twang Arm and back to the Groundhog Days. So this will be a kind of Gecko Glossary. And if we are honest, it is actually as much to remind and entertain me too!! Looking back it is interesting to see what has taken on a firm place in my life and what has faded into oblivion and insignificance.
Throughout my blog, and in line with the approach I took with the original Feisty Blue Gecko blog, I use initials for family and friends in order to protect privacy. This includes my Doctors, and I have to start with them as they are the heroes who have guided me through this.
I started on this path with a consultation with my Dr in Yangon, Dr Y, who referred me to Bangkok and has tirelessly looked after me since then. Through some very dark days and unpleasant procedures it has to be said. She told me once that I never walk into the surgery with something trivial (I have walked into her surgery with pneumonia, shingles – oh, and cancer!) I am threatening to come in with a severe dose of hypochondria!
On arrival in Bangkok, I met Dr W and later his colleague Dr S, my wonderful surgeons, great experts in the field of breast cancer. Dr W consults on Tuesdays and Thursdays but when he received the referral stating that I was arriving in Bangkok on the Friday evening, he arranged to come in that evening to review the results of the mammogram and ultrasound. He was the one who showed me the spaceship and changed my life with his gentle but irrevocable words, “this is highly suspicious of cancer”. He offered to operate the next morning along with Dr S. They both looked after me during those first weeks and I bear the marks of their expert craftsmanship. I still see Dr W every three months and I think we are both surprised how far I have come since that first day.
Once I received the pathology results from Dr W, he introduced me to Dr W2, my oncologist. Dr W2 bounced into the consulting room with one of the grandest and loudest entrances I had ever experienced. He continues to display his personality which is far greater than his stature, with his honest and direct approach. He has led me through my treatment plan and also continues to monitor how I am doing with his wit and warmth an integral part to his consultations.
The Oncology Angels
I first met the oncology nurses of Floor 5 when I was wheeled along for Chemo 1. From that day forward I have been cared for and treated with the highest level imaginable of professional and warmth. These angels were able to take blood from my veins when I was dithering with fear, wired me and my port up and administered the whole chemo and more recently cleaning procedures, in the most comfortable way possible. I hero worship these women, they were at the cutting edge of the treatment and I have been a very nervous patient.
I will never forget the strange shape which Dr W showed me on his large screen. It looked like a spaceship. It was a cigar shape, and from the main body there were four strange shapes growing outwards, each one a bit like a cloud shape on a thick stalk. The fact it was irregular and growing in different directions was a very strong indicator that this was malignant. The spaceship was ceremoniously removed and analysed but not before it had made a takeover bid and lodged in 6 of my lymph nodes. The Spaceship has gone, but I am living with its results every day.
Twang Arm was an unexpected arrival. I had expected great discomfort from the after effects of the mastectomy. I had not expected to experience numbness, pain and a limit on movement in my left arm as a result of the lymph node removal. I had not expected to have a set of tightly pulled guitar strings running from under my arm to my finger tips. I had not expected a strange interconnected set of pains, numbness and sensations in places far away from my arm (my cheek and ankle for example) as a result of nerve damage. However, that is what I got. Twang Arm took up residence from the day of my surgery and has been an unwelcome guest since then. We have entered a long term engagement. I would stress that this is an engagement between adversaries in conflict rather than preparation for a long and happy marriage! Despite regular exercises and my swimming obsession Twang Arm is still making its presence felt. However, if I look back I have to see that its place in my life is less significant and certainly less painful and uncomfortable. I have a much better range of motion, I have much more strength and the strange numbness is only in an area very local to the surgery site instead of being in satellite locations all around my body. Twang Arm almost has the last laugh though – it is exempt from blood tests, injections and even blood pressure testing while poor old other arm has to take all the bashing and pricking in its place.
The Groundhog days
Early on after my first cycles of chemotherapy, I realised that the first days after each cycle were Groundhog days, just like the film. I would wake up in the morning, for a second would be in ignorant bliss. Then the side effects would catch up on me and I would realise that I had yet another day in front of me, which would be just like the previous days. I found that I had around 5 Groundhog Days after each chemo cycle. When I asked for a cup of tea family recognised this as the signal which showed I was starting to see through the groundhog fog and see a bit more clearly.
The Triathlon from Hell
While I was undergoing chemo, I read a description of cancer treatment as a Triathlon From Hell. Wow did that strike a chord!. It was indeed a triathlon and it was in many ways an experience from hell. The first event was surgery, and it was followed by the chemo event. Graduation from chemo led to the third radiation event. It pushed me to the limits of endurance. But I got through the Triathlon, I was able to move through each event and now it is well behind me. I do not rest on any laurels however, I have no idea if I will have to go through another series in the event of the cancer beast making a come-back. I am also too keenly aware that for many the triathlon is a way of life.
Rocky and Rocky 2
If the three phases of treatment were a triathlon, then I felt that 8 cycles of chemo over 6 months represented a Boxing Match! This was a Boxing Match with 2 massively unequal opponents.
One of the most difficult days I faced, and one which I found disproportionately upsetting, was the day I met Dr Evil. I met him in the mirror. Three weeks after the first chemo my hair was falling out in handfuls, and I could no longer put off the inevitable. I went to the hairdresser and any notions that I would look kind of cute, like Sigourney Weaver were blasted into oblivion by the appearance of Dr Evil (from the Austi Powers films) in the mirror. I never quite got used to seeing him and never ever welcomed him.
I had a hilarious time (well with hindsight it is amusing, it was not so funny at the time) trying to get a wig in Bangkok. Options were very limited, most were for Asian colouring and made me look like a Goth, and wigs are feel like a bit carpet on your head. My wig was quickly christened Grizzy because I felt like a scruffy bear in my wig. I ended up hardly wearing the rug and was much happier with scarves!
One of the side effects of Taxotere was a kind of leaden leg effect. My legs were unbelievably heavy and very weak. They felt wooden and as the cycles progressed they became quite unbiddable and awkward. It took a few weeks for them to get some semblance of biddability back.
One of the delights of Tamoxifen is the sudden onset of excruciating cramps. These come on unpredictably and force my feet and legs into very strange distorted shapes. My toes head in different directions and look as if they are on artificial tippie-toes, just like Barbie dolls. Ouch!
I am not quite sure when Captain Paranoia made his first appearance. Rather he kind of sneakily moved into my life, and before I knew it he had taken up residence. He is not exclusive to me though, I know he causes his mischief all over the place, convincing us that we have the most worrying signs of recurrence. He tends particularly to enjoy the period before checks and works in partnership with Dr Google.
No matter how hard I try, I am too often tempted to consult Dr Google. The problem is that he is too easily available and loves to respond to questions like “I have a funny mark on my heel, is it cancer?” with “ooh more than likely it is heel cancer”, and he produces pictures for added hysteria. We know that we should not consult him, we know that he is unregulated and unethical, but we are still tempted. Interestingly, the more Captain Paranoia leaves me alone, the less likely I am to be tempted to approach Dr Google.
Just before my first chemo, my friend J suggested that I get myself a treat after each cycle. That was a brilliant suggestion, and one which I took away and developed further. The chemo treat system became an integral component of the chemo cycle. Planning my treat was something which occupied my mind before and immediately after each chemo. I found that I developed an unwritten set of “guidelines” for the treats. It had to be something which I would keep, and not a perishable like chocolate or a sweet. It was usually something which I could use frequently, and something which would motivate me to do things which I would bth enjoy and which were good for me. Chemo treats included a new swim suit, art materials and the famous I pod library disaster! Interestingly I still love my swim suit (chemo treat 4) yet the Jamie Cullum jazz (chemo treat 6) I still cannot listen to as it transports me right back to the chemo days!
So it has been quite a busy couple of years with all this going on!
Throughout this blogging experience, I continue to be humbled and truly touched by the number of warm friendships I have developed, by the amount I have learned and by the level of feisty debate. I will never ever be thankful for cancer for picking me, but I have many other side benefits which I truly value.