Its been a while since I last shared I am afraid. Rest assured I haven't died. But I have to admit, I have experienced great relunctance to sit down in front of this computer and share with you this part of the experience. For many reasons actually....
Firstly, a blow by blow description of every bloody awful sympton that Docetaxel has gifted me these last six weeks would either desensitize you or bore you senseless depending on your perspective on illness, or make you so terrified of a cancer diagnosis for you or a loved one that involved docetaxel. Apparently though it does affect people differently and whilst I didnt suffer so badly with FEC (my first chemo regime for three goes), some people do and go on to have no problems with Docetaxel. Its a crap shoot apparently. But perhaps the greatest reason for finding this so hard to journal was that each time I tried to write about what was happening I would just start crying and become ridiculously and dramatically verbose - again running the risk of boring you all senseless!!!
So today is one of my few good days and my mind is clear and my body only marginally compromised so here I go providing you with an update overview. Apols if its a bit lengthy but I have to write whilst I am feeling ok.
Yesterday, September 12 was my last chemo session. I want to refresh your mind with reminder of how I looked at my first session to how I look now at my last session and the effects over this period
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| Now I look like a bad Gary Ablett Jr!!! |
Yesterday was an auspicious day for two reasons. 1. Because it was the last of my six chemo poisonings and 2. It was our dear friend Pauline Crameri's birthday. I am going to go one better than Facebook Paul, and send you blogged birthday wishes!!!!! Trump that Facebook Friends!!! Miss Viviette came and shared with me, what is hopefully my last ever chemo chair experience on this mortal coil. I will now start my downhill slide into pain and discomfort and this will last around 10 days, after which I will hopefully start to improve and start the long slow road to improved physical and mental strength in time to bat up for a double mastectomy - hopefully using the abdominal flap method. But I will save all those gory details and pics for latter blogs peoples as it is, quite simply fascinating!!
My legs started to lose strength and the capacity to maintain my own torso weight. I began to experience first hand, the horrors of limited mobility without conscious significant effort. In the beginning I had to rock from side to side to shift and obtain a forward momentum. By the second day of this affliction I could no longer manage that and Siobhan had to help me on and off the bed, the toilet and the couch. I think that the sheer awfulness of losing independent mobilty will stay with me forever.
During this bad window, I experienced many fucking awful symptons. I was on the toilet so often, the bloody toilet seat has effectively molded to the shape of my backside. Anytime I ate anything, it barely made an impression on my seriously impaired, metallic and woolly tastebuds and spongy gums, before gleefully scooting past my osephagus, letting me know of its passage south with a violent and noisy episode of reflux, to then making its way to my gut and providing my intestines with what seemed like hours of cramping and subsequent sweats and pain and finally, exhausted blessed relief as the waste left my body for the umpteenth time that day. I could be more descriptive good folk, but I will refrain in the interests of decorum and simply say.....suffice it to say, my bottom was oh so very very sore. Even during the night there was no relief as violent toilet trips were
frequent so little sleep was had.
Sleep deprivation was also caused by what was the worse symptom. I felt like a torture victim. In addition to having legs sore and swollen and reminiscent in size and shape of John Nichols (anyone not a footy supporter - google it!), it was like someone had attached connected transmittor patches all up and down my legs and random electrical currents of varying strength and intensity were transmitted at will over a relentless 48 hour period. I didn't know what was worse the pain from the electrical currents that made my legs involuntarily seize then jolt around, or the pain incurred from the tensing of my muscles in anticipation of the next series of currents. Fucking, fucking awful - at one stage I ended up on my hands and knees on the bed crying in pain screaming that I couldnt take it anymore.
In addition to losing body fluids and waste at one end of my body, I was also inflicted with a constant running nose that contained small amounts of blood from constant clearing and my eyes teared endlessly for days making vision and basic walking or seeing very difficult. My nails have lifted from their respective toe and finger beds as they have become discoloured and fragile. I have gained more than seven kilos. And my eyes twitch constantly. And perhaps the saddest physical evidence for me of all things is no eyebrows, no eyelashes making me look and feel like a flesh coloured bowling ball and my feet are always so very very sore, that I cannot ever imagine wearing high heels again in this lifetime. Those who know me well will undertsand that this alone has shaken me to my core!!
This was the pattern for the first two cycles and I now face the third cycle knowing that more of the same is on the way this coming week. I am tired, the fatigue just doesn't go away. I look like shit. I no longer "bounce back" like I did with the first three cycles and I have lost the ability to return to my natural state of a positive equilibrium that has probably been my single best attribute that I have been so lucky to have all my life.
During these two last cycles, I have also "gotten" an infection that has resulted in a temperature over the desired maximum of 37 degrees. When one has a very low white cell count - usually around Day 8 - Day 10 one is in danger of being neutrapaenic (?? spelling). being neutropaenic menas that even a small increase in temperature can have very serious, even fatal consequences so one must act sensibly and quickly. On both occassions during such days I have had an infection. An infection during the first Docetaxel cycle was one complete with its own sense of utter irony. One has no hair........anywhere peoples. But guess who was the lucky little petal that got an infection from an ingrown hair - "down there" that left me with....let's just say....a fat lip!!! You will understand perfectly why I have not shared any pics of this particular episode!
Well this little bald duck wasn't going to go into an ED and have some first year Emergency Registrar pocking around, slicing and dicing her pink bits anytime soon, despite the potential seriousness So I took some left over antibiotics and hoped that between the weekend and my Monday appointment with my GP, my temp would have dropped. Am still here so all good and GP and Medical Oncologist conferred and established that it was in fact better not to cut one open when one is so compromised - so good call to lay practitioner Minogue!!! Second cycle infection resulted in me having to go to St Vincent's last Wednesday week ago as temperature soared to 40 degrees and I felt like utter rubbish. Peter Mac didn't have a bed available so Pauline whisked me down there, Siobhan left work and met us at ED, I used my magic card for fast track entry ahead of a busy ED crowd and spent the next six hours hooked up to saline and stuff as they brought my temperature back under control. Here I am looking suitably tragic on a trolley in ED but St V's people were just wonderful. On both occassions a blood test determined that I wasnt neutrapaenic at the time so all was good.
They couldn't establish the site of this infection and I ended up having a chest x-ray to see if that might help but no luck. I do expect though that I will go three for three and have another infection in around 10 days time. Am so over it but you have probably worked that out by now....... Again for a compare and contrast. Here is me first time bald on the left and below that on the right, how I look now......Less Sinead O'Connor and more beige non-descript person!!
But its not all bad good readers, I have celebrated a lovely birthday in early September with the incomparable Siobhan, enjoyed a lovely lunch, dinner, beautiful flowers, gifts and thoughful cards from the dearest and most treasured friends and most thoughtful colleagues. I have been well enough to attend a good friend's father's wake and I have been able to see my perennial garden warm to the sunshine and begin its Spring into life. I have had the joy of being cared for by the best nursing agency who I think may become a not insignificant council problem if I ever have the audacity to return to full time employment and leave them home alone!!
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| Three of the four West Highland Nursing Agency team watching vigilliantly over their patient. The fourth is at the Drug Cupboard sourcing me some pain killers!! |
I am a footy supporter who prizes substance over style any day. And Frazer - or Dog as he was known had it in spades. He was a fearless, ferocious and dogged opponent, a true hard man at the ball. I loved his work ethic and his ability to take as good as he gave. His performance in the final in 1995 from memory against Essendon that won us that final will live in my memory forever.....and he had the best hair.......ever!! Still does in fact. The fact that he is the nicest, utterly unpretencious bloke you would ever care to meet is icing on the cake. And he swears beautifully!! One for the picture album without a doubt. He also brought me a drink to boot!!
So there you go folks, we are up to date with the ghastly stuff. I will now have around 10 days of crap and then hopefully start to improve. I will begin the work and research for the surgery options having done some prelimary consultations with the terrific Plastics Consultant at Peter Mac this week and had 10 topless shots taken of my boobs by the "medical photographer" all for medicinal reasons natch - but the hands on hips and hands on head poses felt a tad porno-ish for my liking......The mastectomy part of the process though scary, arduous and quite the undertaking will be quite a learning curve so please stay tuned for future updates.
I will leave you with a photo of the best and most useless redundant presents I have ever received from the wonderful Michelle - a pair of Captain Carlton hair clips to keep my hair out of my eyes and off my face....
Stay well and look after your selves.
Kelly xxx
