It’s a very strange feeling to be over 16 months out from chemotherapy and yet be back to square one with the hair where it all began to fall out in April 2013 from FEC – D chemotherapy. Punk Chick and JRF helped me treat the hair loss as a celebration of sorts, a path to wellness. “Piece of cake!” I said, since it wasn’t going to be permanent.
In retrospect, what a genius idea it was to document that process for the SHITTY TITTIE CHEMO CUT CHALLENGE. None of us had any inkling that so much of my hair would be killed off permanently by my life saving chemotherapy.
Just yesterday, I had the pleasure of lunch with the radiant, rainbow coloured, hairdresser Punk Chick and my dear sisterlike friend Kenny. They agreed my head could do with a shave as there wasn’t a lot of other options holding out for me in haircut land. So this had to be. A clean slate. Starting afresh, moving on, and all that.
As it stands, this must be about Shitty Tittie Chemo Cut Fourteen, and hopefully one day very soon, I won’t think of this as a chemo cut anymore but just as “my cut”. The association between this and chemo is very strong. But so was the constant reminder of cancer from looking like I had the hair of the Three Stooges.
(Yes, all of them together) And many people still thought I was still having active treatment anyway.
I’ll continue ingesting Minoxidil and Spironolactone through the summer and then I think I’ll just forget about it. The hair specialist says the hair I have is likely to fall out once the meds stop. But I have so much to be thankful for and it’s time to direct my energies to more important things. You know, like things that actually matter.
So for now I’ll run with the slogan , “the family that shaves together stays together”. Or something like it.
This week saw the passing of three hundred and sixty five days since I completed my Fec-D chemotherapy regimen.
Yes. It’s my “Chemoversary”!
And tonight I’m gonna party like it’s 1999.
No, no, no, I won’t be doing that! Instead, I will, on this splendid Sunday evening, present to you a bathroom selfie titled “Shitty Tittie Chemo Cut Thirteen – The Chemoversary Edition.”
With around 3-6% percent of women who have the drug Taxotere (Docetaxol) going on to have poor hair regrowth post chemo, and with doctors stumped about what the mechanism is that leads to thinning and baldness in some patients, I’m guessing this makes me pretty spesh and unique.
But there is more to life than having long, thick hair.
For example, wiping hairs out of your face on windy days is such a pain. So is getting a long hair in your mouth while you are eating. That stuff one can do without. Who needs to waste time purchasing hair accessories? Who really wants the risk of getting their hair caught in power tools? That is dangerous! Or braiding or platting hair. Pffft! Or tying it back with scrunchies. So 1980’s anyway. Those things are all so, so overrated! And quite frankly, pony tails belong on ponies. There I said it!
There is also much, much more to life than supporting the hair dressers of the good land in which you live. (Sorry Punk Chick – It was my dream to visit you every couple of months for a new do to make up for my abmissal hair dressing tally from the 1970’s to 2013). But in 369 days, and after a bit of fuzz trimming, this is where we are at. I ain’t going to be helping you pay your bills any time soon!
Thank you to all the people who felt sorry for me. It truly helps to know you hold some sort of nostalgia for my hair loss too. Thank you also to the people who finally conceded defeat and stopped telling me it was early days and would grow back normally with more time.
To get a little nostalgic for my lost hair you can see what it started out like prior to chemo and finished up as in the video here…
Huge thanks to my girlfriends Candy, Marina and Angie who sent me or offered to send me their wigs from across Australia. An incredibly real version of Lady Diana and Ab Fab Patsy arrived at my front door via Australia Post. I’ll share some pics of these at some stage. I have embraced these wigs a few times in my own house with the blinds pulled down. I even ventured out in public in the company of trusting girlfriends, when late one night we went out for dinner in town on one of the coldest and quietest nights of the week. At this stage, they still feel a little like wearing a dead marsupial on my head. But I might persist. Might being the operative word.
For anyone who ever finds themselves in this situation of hair not returning properly post chemotherapy, there are women world-wide who will share their stories and offer support and advice. Click here to be taken to the resource “Ahead of Our Time” from a group called the Taxotears. Permanant hair loss can be one of the hardest psychological issues to deal with post cancer treatment.
Thankfully, I’m getting to the stage where I’m starting not to care so much. But it has taken many months to get here and I’m not shedding Taxotears anymore.
“Wow, I can’t wait to see what your hair will grow back like” someone said. “I bet you it will be thick and curly. My girlfriend’s cousin had think curls.”
“My uncle’s wife had dark curly hair after her chemo” someone else said.
“A woman that comes to our craft group had cancer, and her hair regrew in so, so thick it was like wool!” Yes, that was said by someone too.
As well as about three thousand other examples of post chemo hair growth observations, and about five thousand “Just wait and see, it will grow back soon I am sure of it!”
Six months after chemo, time would tell, by then most people have their hair back!
We rolled on through the loss of my hair in March 2013 from FEC -D chemotherapy, treated it like a celebration. A celebration to saying goodbye to cancer and moving on. I created the Shitty Tittie Chemo Cut Reveal Challenge. Eleven different hairstyles with Punk Chick to make up for my abysmal life hairdressing tally before getting cancer at thirty seven. I even made a video. See…
The hair loss was easy to experience because it wasn’t permanent. Seems now it is. And that reality is now dawning on me.
In the months after the year of treatment finished I threw myself into triathlon, running, cancer fundraising, and walks. I was part of a team that raised nearly $71,000 for Peter Mac (which I will add a blog about shortly). I also walked in The Cancer Council’s Relay for Life, and ran in the Mothers Day Classic. So it’s fair to say I’m totally pinked out for a while.
Fourteen months ago, I had long straight thick blonde hair, and pretty much for most of the thirty seven years prior to that.
Today, I don’t. Today, I’m sitting in a hair loss clinic in the big smoke.
There are some white Eames replica style chairs in this second floor medical office and I am invited to sit by a doctor who clearly has never had any issue with hair loss.
The white chair beside me has one lone, thick, dark and very long hair on the chair. Just one.
We discuss my history of hair and the details of my treatment for breast cancer. What was the extent of my shedding prior to breast cancer? Prior to chemo? Was my shower plug hole filled with hair or just some strands? Parents, yes, they had excellent follicular coverage on their heads. Yes, my Grandparents all had thick hair, although my maternal grandmother’s hair was thin at 79. Yes, my older brothers both now have receding hairlines and male patterned baldness. So does my husband. (Just thought I’d put that in. It really has no relevance!)
I am shown a picture that documents the degrees of shedding with varies sized hair clumps in each box of the table. Mmmmm tasty!
“How is the hair on other parts of your body?” asked the hairy doctor.
“Well, eyebrows haven’t returned, eyelashes haven’t grown in. Leg hair and arm hair is okay, a bit thinner than before. Pubic hair is thinner. Nose air, hasn’t returned. I have a A LOT more facial hair now. You know those ones that grow a few inches in twenty four hours? Yeah those. And of course, my head has developed male patterned baldness or androgenic alopecia, which according to Google is hair loss that occurs due to an underlying susceptibility of hair follicles to shrink due to the role of androgens.
The hairy doctor taps away on a wonky keyboard entering all of this data into my electronic file. This incessant clunking of the iMac keyboard perched precariously on a mouse pad, half on and half off goes on forever. Why not just stop and straighten it?
Then, out of nowhere, tears begin to gush from my eyes.
The hairy doctor stands up from the white replica Eames chair, comes around to the front of the desk and takes my hand. I am told “Be happy for your children, be happy for your children.”
“It’s only hair”
But it’s not ONLY hair!
After a year and a half, this is the thing that gets to me. It’s not the mastectomies, the ongoing pain, the weight gain, the menopausal symptoms, the loss of sexual function and intimacy, the ruptured tissue explander, the damaged lung, the supposedly benign lesions on my liver that will be watched. The seeming ability to age twenty years in one. It’s not even the cancer or the loss of my expectation of my healthy life and my healthy future.
This hair loss, my hair loss, ten months after finishing chemotherapy, is symbolic of all of these things. Collectively.
So I compose myself and look sideways over at the artwork on the crisp white walls. There I find no distraction. For the artwork is an rather accurate representation and of my shiny thin scalp and my receding hairline. Surely, all of the follicular themed artwork that adorns the walls of this practise is taking the mickey? Lithographic prints of landscapes, detailing hills and depicting deforestation. Barren. Sparse. Just like my post treatment head.
Halfway through the appointment I am asked to move and sit on the chair with the long solitary hair strand.
My head is photographed from different angles. At the end of the consult I am sent to the blood collection room. My results will be discussed in a month. These tests are done to ascertain if there is any underlying cause of hair loss, not related to chemotherapy or genetics.
But the wobbly keyboard. The follicular styled artwork. The single hair on the chair. The tears just keep flowing throughout the consult and I am offered a box of tissues to quell the year of tears and emotion.
The hairy doctor leaves the room and gets the Professor. I’m a little too difficult to manage. Minutes later, the face of hairy hope enters.
The Good Professor says that with some people, their hair never grows back post chemo, and they just don’t understand what the mechanisms of this are. It is really just luck of the draw.
“But there are many things we can do” he adds.
Medications can be taken long term, not to regrow the hair that has gone, but to slow the rate of shedding going forward. So let me get this straight! These medications won’t work at regrowing hair on my head, but as a side effect, they will add it to my face and body. Pleeeeaaaase no!
As for those expensive lotions and potions, useless too.
There are hair transplants. At this point, the horror of the catchphrase of the “Advanced Hair, Yeah Yeah! Ashley and Martin television add flickers in my head.
There are wigs, so post consult and blood collection, I am shown a small wig display of cheap synthetic wigs as a starting point.
The wig option seems to be the most enticing now, after I ridiculed the prospect of them last year at the LGFB workshop I went to and wrote about here.
When I finally leave the consult room I notice the long, solitary hair is no longer on the white Eames chair. It must be stuck to my backside.
On the train I ask myself the question, WTF am I spending lots of money seeing a hair specialist to be told it’s only hair? I thought a hair specialist would understand that it is not ONLY hair to their patients. I mull over the expensive treatment options. I am not sure how to proceed. Does it even matter anymore?
As my train leaves the city and stops at one of the last suburban stations, my face lights up when I see my friend boarding my carriage. I really, really needed to see him today. He boards the train and fights off other passengers who want the seat next to me. We embrace. We have a long chat as we travel to his home in the county. He makes me a delicious meal and we talk about hair, chairs and being grateful.
I am cancer free at the moment, so why don’t I just focus on that? I should be grateful.
Just. Be. Grateful.
January the 18th was an awesome day for so many reasons. Twelve months on (and ten months of breast cancer treatment between), I went back and completed my second sprint distance triathlon. The first was done a week after diagnosis and marked the beginnings of me entering the fray of the disease blog genre when I published this post.
Three hundred and sixty five days ago I was filled with the terror of cancer and what was to lay ahead for me. When I made my way into the river for the triathlon start, all of the cancer related anxiety disappeared. I checked out of Cancerland and tuned into the sights and sounds around me in the immediate moment. It was sunset, there were hundreds of heads and arms thrashing about ahead of me so I waited at the back of the swim pack to compose myself. There were large rivergums on the banks and the sun dappled through their branches, there were sulphur crested cockatoos and galahs screeching at each from the treetops. Through my goggles I could just make out the Port of Echuca Wharf in the distance.
I recall the exhilaration of commencing movement through the tea coloured water, of seeing air bubbles emerge from my mouth, stick to my face and be pushed away with the momentum of swimming. Of seeing arms and legs thrashing and churning through the water. The thrill of turning the large meander bend in the river and swimming within metres of paddles steamers. Of being pushed along by the current of the ancient river towards something great. The sensation of fine river sediments squishing between toes as I stood to make my way up the hill to the bike transition. I was alive and the Dread Dragon from the previous week had finally taken a nap and didn’t return for a couple of days. My family and friends were there to encourage and support me. I wondered if I would ever do anything like it ever again. I would have to wait a long time to see.
Two days later, the Dread Dragon returned and breathed fireballs at everything that mattered to me in my life. Struggling to sleep and eat from the fear of the unknown, the long road ahead of cancer treatment ate away at me. Mr Cool took me off to my local hospital, anorexic from my short dalliance with the anti-depressant medication my doctor had tried to help me with a week earlier, nauseated and with heart palpitations from the sheer anxiety and terror of being a newbie to the world of cancer. The waiting for results had began.
After finishing ten months of treatment and giving my radiation burns time to heal I decided to return to this event. In November, once treatment was complete, I took off like a rocket and tried to train as I once had, six times a week. But it was too soon and too much for my chemo and surgically depleted hemoglobin. I was falling into bed at 7:30pm and was unable to wake in the mornings. So I dropped the training back to three sessions a week and that seemed to be enough to help lift my treatment fatigue. I almost gave up on the idea of returning to the same triathlon. For weeks it just seemed unachievable and unrealistic.
But in mid December I decided to have another go at reaching the goal and I started training more frequently again. I wasn’t waiting any longer. My goal was just to go back and finish it again, 700 metres swim, 20 km’s on the bike and a 5 km run and feel comfortable in myself through the process.
I’m glad I didn’t give up on this idea. I’m glad I didn’t wait.
This time, there was much less fear about doing the actual triathlon even though I had a lot less fitness. Having completed it before helped, but there was something about what I have been through in 2013 has made me a bit tougher with respect to challenges. A bit more of a go getter. Some people suggested I should wait. Wait till my body had recovered more. But there is no time to waste. Why should I wait to be ready to exercise? To train? What was I supposed to wait for? What was I fearful of? Getting better? Getting past cancer? Getting on with living?
I’ve put off many things in my life thinking there would be a more appropriate time down the track to start working towards something. I’ve made loads of excuses. I sat and waited. The years rolled on by, and I was still waiting. But I’ve learnt this year that the best time to start is NOW. Not when I think I look more respectable in lycra or am fitter, or have faster times or feel more comfortable while running. But to just jump in and have a go. Just drop the fears and the inhibitions that hold us back. I’m not going to be the Mum who sits on the side of the pool anymore and watches my kids. I am what I am. In all of my puffy, wobbly, bald, post treatment glory.
While waiting in a pre race toilet queue, I got talking to a lady who asked me if I had done the race before. My thin short hair still screams cancer to some people and after she glanced up at my scalp she paused uncomfortably. I told her my story and she proceeded to show me her open heart surgery scar from ten months earlier. Surgeons removed what was thought to be cancer on her aortic valve. And there we were waiting in a pre race toilet queue about to do a sprint distance triathlon. Both of us with an appreciation for our lives and making the most of things. Waiting for the loo. But not waiting for the things that were important to us.
Then, while waiting on the grass for the pre race briefing, I spotted a couple walking past the park. They had waited for the right moment to approach me. I bawled like a baby on recognising high school friends Mel from the Blog I GOT THE GOOD CANCER and ‘Bevan Lemon’ that drove a 700km round trip to surprise me. This gesture mean’t so much to me and I will be forever be grateful to them for doing that. Even more incredible was that Mel had just finished 6 months of chemo and here she was, in the northern part of the state on a 39 degree day cheering me on (and she still has better head coverage than me!) and all while waiting to see if her cancer was in remission or not.
When Mr Cool and I went to leave our children with their grandparents to walk to the start of the swim, my oldest son got upset. This was partly because he saw my reaction to Mel and Bevan’s arrival. But it was also about him remembering the details of this previous year vividly.
He remembers the state his Mum was in last time I did a triathlon and it was when his life changed immeasurably. Shortly after that triathlon his Mum went away to hospital many times, she came home with hard breasts with scars and spent long durations in bed and there was a bag of blood attached to her and she kept going back to hospital all the time to see doctors. She couldn’t hug him like she used to because she was in too much pain and she couldn’t lift her arm anymore. Then her hair all fell out and she was too sick to care for him and his brother, and people kept arriving at his home with meals and cards and flowers. He had waited a long time for “his” Mum to be “his” Mum again. And now we were back in the place where in his mind, it all began.
After reassuring him that everything was okay and that I was very happy and excited, he agreed to cheer for us and I gave him our camera and asked him to take some photos. He played with his brother and they watched and waited for their parents to come into view as the race progressed.
With all of the excitement of surprises from sneaky friends and unsettled kids, Mr Cool and I hurriedly made our way to the start and while walking with a friend the tears started flowing at the feeling of being back here. I had waited a long time to get back here, to this moment.
We were late getting to the start line and it was like a comedy of errors with Mr Cool and I trying to get our wetsuits on as the starter called five minutes and a few hundred people gathered in the water below us.
Still conscious of my post chemo Harold Bishop hairdo, (a character from the Australian TV Soap Neighbours) and the complexities of easing the new hot flush me into tight lycra and a wetsuit that fitted me much better pre treatment, I got a quick kiss from Mr Cool and ran down and jumped into the river at the back of the pack and immediately started the swim.
I’m not a fan of menopausal hot flushes underneath a winter wetsuit and swim cap. Half way along I had to stop to tug on the neck of my wetsuit to let some cool water in. Then I resumed swimming. When I reached the river exit I fell over getting out of the water. I was then unable to get the wetsuit down over my much broader chest and my arms were much more tired from the swim this year. I walked through transition and wasted 5 minutes just trying to work out how I would GET THE DAMN WETSUIT OFF! Riding a bike in a wetsuit? Now there would be a challenge. But I took my time and as the transition area emptied itself I was able to pry the wetsuit off my elbows and make my way out onto the bike course.
On the bike the wind picked up and I was at the very back of the bike field pushing on my own through the wind. Despite there being very hot and windy conditions, I rode the 20km’s with a big wide smile. As I pedalled along I reflected on what had occurred in 2013. My body felt more tired with each lap but I felt comfortable, and I was okay with being last. I was just thankful to be there, and so grateful to all of the people that supported us in 2013.
Then out of nowhere a woman rode up along side me. After some chatting about the heat and the wind and some introductions, it turned out it was her very first triathlon. She was intending to enter the event as a team, and wait till later on to enter as an individual. Down the track when she would have developed more fitness and discovered if she in fact liked triathlon or not. But when she went to sign up she discovered her ‘”friend” had already entered her as an individual to complete the whole thing. So on just 18 days of training she turned up and completed the race. What a legend! And that made two of us who were not waiting.
My incredible partner raced the swim and bike legs in the lead pack and then chose to stop and wait forty eight minutes for me at the start of his run leg to run alongside and finish with me. In his mind, I would not come last, as he would cross the line after me.
Yesterday, I surprised even myself. My second sprint distance triathlon achieved, twenty minutes slower than last year and my proudest achievement yet. But most importantly I was again reminded of what an amazing network of friends and family I have around me and in choosing to do this triathlon, I was able to give my sons the image of me running across the finish line, ecstatic and with their Dad in tow. I’m glad they didn’t have to wait a second longer to experience this.
Now if only I didn’t have to wait for some more hair!
My breast surgeon breezes out of the consult room and calls another patient in. Through all the heads in the waiting room she finds me and waves, and there is even a smile. She is obviously glad to see me again. You can call me delusional but I speak the truth. This is my second visit to her in the last 2 weeks after my second mastectomy and immediate recon with tissue expander. It’s breast inspection day and there will even be a saline fill from my bearded plastic surgeon after our consult.
In the 8 seconds she appears outside the consult door with patient file in hand, I drink in as many details as I can. Her hair is lightly tussled. She is dressed in a black tailored jacket with a very short cream frill layered skirt with black sash trim. There are those impressively elegant legs that are finished off with canary yellow stilettos with silver toe plate detail. Spring is here. Gone are the black tights and designer boots of winter. Simultaneously, the track below begins to play in my head like we are in a movie scene. Press play, go on, do it now. Okay, you can pause that at any time.
After a short wait I am called. As I walk through the door I nervously blurt out how fabulous she looks. I am greeted and inspected with the usual efficiency. The operated breast looks good just 16 days post surgery. She snips a stitch that hasn’t broken down. She has taken the cancer, 22 lymph nodes and 2 breasts. Her job is mostly done with the exception of a visit in 6 months and then annual reviews for the next 5 years. Simple.
Next my bearded plastic surgeon enters the room wearing a hospital fundraising, cancer charity, cycling jersey over his usual business attire. As he steps towards me his mobile phone rings with the opening chords of a “bad to the bone” ringtone. Mr Cool and I break out in laughter. He inspects his handy work looking at both tissue expanders that have been inserted six months apart. They are considerably different in size but he isn’t worried.
The exchange surgery next year may include using 2 different sized silicone implants to get visual symmetry. He is happy that the nipple looks like it will survive, making the same comment as the breast surgeon minutes prior. I hadn’t even given that a thought this time. As it blackened from the trauma of the mastectomy and was at risk of infection I just assumed it would be safe like the last time. Then he asks me if I would like a fill inserted into the new tissue expander which is noticeably smaller than the one done back in February. I nervously giggle and nod for I am about to get ‘a bigger one’.
He leaves the room and returns with a 1 litre bag of saline and an enormous syringe and needle. He asks me to lay down on the hospital bed bare chested. He uses the magnetic port finder to locate the port, marks a spot with purple texta on my chest which is still tender from last fortnight’s mastectomy and recon surgery. He then inserts the enormous needle on saline into my breast, piercing through the skin into the port. I don’t feel a thing and he proceeds to fill the expander. First 20, 40 and then 60mls and I begin to feel tightening and constriction in the pectoral muscle across my chest and just under my armpit. I wonder if I can breathe. So I take some breaths to test the vice grip that is tightening around my rib cage.
He says “Make sure you tell me when you are uncomfortable. I don’t want you to be a hero.” I nod conservatively. The sensation of filling fools me into thinking it is possible my chin might just hit my breast when I nod. Lying on the hospital bed I’m not sure what I can tolerate so I laugh. He keeps filling to 80 mls, and I exhale and say… “Yes, yes I think that is enough for now!”
As the pressure mounts it’s like a tightening in the pectoral muscle accompanied with knife pain extending round under my armpit into my back. Very, very painful. He backs off and takes out 10mls and there is instant relief. The volume of two teaspoons. Together we then decide to take out another 10mls which is more tolerable. When he withdraws the needle it feels like I am a rubber mannequin. The body isn’t mine. The needle catches and as it withdraws the expander holds onto the needle tightly, vibrating and pulling.
He has inserted just 60mls in total, the equivalent of 2 shot glasses or 3 tablespoons, depending on if you are a bartender or a baker. I think of those women who have fill after fill of half a litre in each expander and greater. And those women who go through this process for cosmetic reasons. Cancer brought me to this point so I feel a little differently. I am left with 144mls in my first expander from February and today I lay with 280mls in my right expander. Interestingly, the February breast is much bigger. He assures me the mathematics is not important. The final exchange will work out the symmetry.
After the procedure, I need help getting up off the bed and look at my chest in the mirror. The breasts now look quite even. Mr Cool helps me with dressing as my arm and chest are not sure how or if they should be moved. We very slowly walk out of the hospital as I experiment with new strategies for breathing. We dawdle to one of our favourite city lunch spots. On the way Mr Cool and I debate about who my plastic surgeon was speaking to when he answered his bad to the bone ringing mobile. I envisaged him talking to his daughter about his grandchild going to sleep. Mr Cool felt it was a patient going to sleep in surgery. It doesn’t matter who is right. We are hungry and I don’t know if I can even lift or move in particular ways or even eat with the sensation of just 60mls. I wonder how on earth I will make the 150km journey of bumpy roads home? For now, the breathing, is okay though. And I intend to return post radiotherapy for another very small fill in late October.
There has been 2 and a half weeks of post surgical pain and recovery. There has been a very conscious attempt not to get addicted to serious pain analgesics. There has been careful management of an Exudrain surgical drain which I am now free from. There have been daily nurse visits to my home, and persistent post chemo and surgical drug induced digestive woes. I have been fortunate enough to have had some wonderful visitors in my home including my mother and sister in law. They are now gone and life is moving forward.
Very soon I will post the retrospective blogs I wrote in the last three weeks. While high on Endone and OxyContin and suffering the after effects of five months of chemo, surgery and the dizziness of low haemoglobin, I lost my blog voice and could not concentrate for any length of time. But I am back with a clear mind. So stay tuned.
Well, this is kind of what happened this morning, except there was no shoe on the wall and obviously I don’t have a cute Meg Ryan type hairdo at the moment. And there is no way I could sleep with a humongous soft pillow like that as my neck wouldn’t cope with it. And there are portraits on our wall but not of doctors, sailors and scoutmasters. And we don’t own a straw broom or a cat.
But at that precise moment in the hallway, my shiny, dry, calloused, slippery, Taxotere soled feet slid from underneath me and I crashed down like a sack of spuds, landing heavily on my skull, neck and spine and split my head open (this turned out to be more of an oozing graze). This would not have happened if I was wearing my gold sequinned slippers.
For a moment I layed on the cold, hardwood timber floors evaluating my situation. I called out to my kids and Mr Two came to investigate and then ran off to get Mr Five yelling “Mummy’s fallen. Mummy’s fallen!” From the other side of the house they then got into a tug-o-war over some Schleich farm animal toys and forgot about me. (Note to self: enrol children in First Aid course, teach children principles of empathy and merits of sharing).
As I stared at the dusty skirting boards a small spider came out to greet me, but it wasn’t expecting to see Gulliver’s Travels happening in the hallway, so it hastily turned around and scurried back into its home. Boy I have really let the housework slip this year. Those skirting boards are filthy!
Thankfully, the kids returned and Mr Five brought me the telephone and I was able to call my awesome Mother in-law and Mr Cool at work for some assistance. And with perfect timing a friend from running club arrived with a freshly home cooked meal for my family and although shocked by my gorgeous appearance she looked after me until the others arrived.
I have a good supply of Endone and the GP kindly offered me more. So it’s all good, I’m just a little sore and bruised. Yet I can’t help but laugh at what chemotherapy has transformed me into in five months… a completely bald, arthritic, ninety five year old falls risk, complete with dirty skirting boards.
I have been in bed since Friday letting my last chemo take hold, perhaps I should have stayed in bed an extra day? Anyhow, chemo is done now and I intend on having the last defiant word.
Incidentally, last Wednesday was also wacky. I had a full bone scan to see if I had bone mets in my spine after weeks of worsening spinal pain. Results were negative. Yes they were! But I do happen to have a
shit load alot of arthritis instead and the Taxotere has made symptoms flare. Amazing that a diagnosis for arthritis could fill me with such joyous relief! So I am again winning! And most wonderfully in all of this, after today’s fall, that arthritic pain shouldn’t be so noticeable anymore. Well played Lisey! Well played!
In short, for those blog readers that are time poor… On Wacky Wednesday there was a huge wacky of my cancer free backy along with a smacky to my cranium.
I went to my final round of chemo today. I wanted to mark the occasion by skipping into oncology, laughing with the nurses as we clanked our cosmopolitain cocktails and reflected on the joyous chemo socks and inspiration from Betsy, while eating canapes, and handing out gifts of gratitude to any chemo nurse that had stuck a needle in me. You know, really celebrate this chemo finale in style.
But reality had me hobbling into the chemo chair like a 98 year old with arthritis or whatever it is in my spine and pelvis, carrying an extra 7 kilos on my frame since this chemo lark began back in March, wearing a cardigan that had remnants of last night’s soup spilled down the front (this being a genetic trait), and sitting in miserable pain till my girlfriend Endone came and took a little while to cheer me up. I was then able to joke with the nurses and Mr Cool who came to every chemo infusion appointment and busily worked away on his work phone. Bless his little 4Shaw cycling cotton socks!
The last few days have seen me uncontrollably and embarrassingly cry as I laid on the chiropractic table and today on arrival at Oncology the nurses asked me if it was okay to have a trainee nurse insert the canula in my arm. I am in such a fragile state with the ongoing spinal pain I have been having that I burst into tears in the hallway and couldn’t speak. I’m all for on the job training, but I just couldn’t deal with anything new or extra today, no pleasant introductions with (probably highly competent but not chancing it) new trainee nurses, no fumbling around with needles for the fragile lady. Just give me my usual engaging and no bullshit nurse who can bullseye that vein like a sniper every time and will probably read this blog tonight lol.
Of course the tears and the miserable face prompted a flurry of movement from all concerned and staff hurriedly raced off to arrange pain meds and a scan and get the chemo started. We again went though the reasons why I really should have an MRI but can’t because of the magnetic port on the tissue expander in my chest. Ironically, the magnet helps plastic surgeons find the spot to inject fills into the expander. Since I was never filled, I didn’t even need one with a port but there you go. So, a full bone scan was booked in for the morning.
I am convinced that the Taxotere (Docetaxel) drug has made arthritic issues in my spine worse. Either that or it’s bone mets. I didn’t do anything to my spine to exacerbate any spinal troubles. There has been no heavy lifting of camping packs, no gardening, no running, no hours of vacuuming, no cartwheels or pole dancing (I promise!) But for 14 days the pain has been chronic and worsening.
Perhaps it’s just very bad timing and it is totally unrelated to chemo or cancer. Perhaps my body is just so low it cannot deal with the increasing toxicity and the immunity depreciating nature of chemo. I would be very, very unlucky to have stage four disease in the form of bone mets while on chemo. But at least the scan can reassure me as I really am a “cancerchondriac” on panicked high alert for symptoms. I’m not dealing well with pain that stays around for as long as it has and gets more intense. I gave birth to two children with no pain meds and I normally am an under reporter of pain. But this is really wearing me down physically and emotionally. So the grand and joyous “Chemo Finale Festival” had to take a bit of a backseat.
Today’s soup at Restaurant PHOR (That stands for Public Hospital Oncology Restaurant) wasn’t roasted butternut pumpkin with garam masala, or lentil with coriander and vermicelli, or a fine miso. No it wasn’t. Today’s flavour was gravy. Gravy soup. I think the chef got his saucepans a little mixed up. Aww who am I kidding? It’s not as if I have any taste buds left that haven’t been napalmed by chemo anyway! Luckily, the hospital sucks as a restaurant, but gets a chef’s hat for chemo care.
The highlight of today in finishing this FEC – D chemo regimen that started way back in March was using my gorgeous teal knit blanket and my gold sequined slippers that some incredible women at kinder gave me on the last day of term. I had saved them to mark this momentous occasion. The last chemo infusion.
So to the “Kinder Cast” I say a huge thank you! To Bilby, to Suzie Q, to Ned Kelly, to Dasher, to Austin Powers, to The Commander, to The Prince, to The Fair Ring, to Courageous C, and all the rest, I’m really saddened that my son is moving on from kinder at the end of the year. It has been an incredible privilege and fortune to have met some really wonderful ladies and families this year at the same time that this bizarre situation began. I would have been lost without their support. The well wishes, the play dates, the kinder pick ups when I was too unwell to kinder mingle as I love, the soup, the kale, the happy eggs, the local apples, the Good Loaf sourdough, the family fights over who gets the last of Suzie Q’s honey soy chicken and scalloped potatoes, the fresh play dough for the kids on a rainy day from the Bilby’s, the frequent arrival of delicious home cooked meals and all the hugs… and all of this is just from the “Kinder Cast”. But there have been several more production casts at work that I need to express gratitude too. Some day, in some way. Gosh our community is awesome!
Of course, I need to ride the next three weeks as this last dose works its magic. So I’ll be expecting to lay low for the next weeks till this stuff starts getting out of my system and I begin to recover in time for the big surgery in mid August. There is likely to be some 6pm bed times this week for me, not my kids. Bring on the next phase.
Can’t wait for my 8am full bone scan in the morn to see what is going on with them bones, them bones, them bones…
Luckily this ‘scanxiety’ wont last long. Normally the time waiting between scans and results is the worst. But this time the awesome nurse practitioner says results will be available pretty quick. Which is surprising as I heard on the grape vine he has a moderate addiction to Candy Crush. So I’m surprised he even has the time to see me. I’m so lucky!
Thanks to everyone who got me through this phase. Love you all and mean it. Really!