Equally riveting, just this week I was officially diagnosed with clinical depression, so it’s been quite productive. It’s taken a lot for me to finally get here. But I have arrived. Woo hoo!
Remember back in the day of junior school when the most difficult thing you had to deal with was when some pre-pubescent, pimply kid, you were crushing on actually liked your friend instead of you? Or your socks didn’t quite match your 1980’s flouro jumper? Remember the joy you felt when you danced to “Celebration” by Kool & The Gang? Remember when the cool teachers gave you wordfinds or crosswords at the end of the day instead of work? I loved that shit!
**Click on the crossword images to print. Answers can be published if anyone on this earth actually wants them. You’re welcome!
In January I was laying in a rolling green field. The slight breeze moved my hair across my brow. I was enjoying the warmth of the sun as it licked my skin and was listening to the birds. I marvelled at the peace and beauty around me. I was blissfully unaware of what laid ahead. I was right where I wanted to be in my life. I had exciting plans. Life was great!
Then, out of nowhere, a big red balloon drifted into my view and crash landed in my field. Incredibly, the greatest people came running from all directions to help. For months, they held on with me for dear life.
Then came the moment where they had to let go.
Now I am left dangling from my red balloon, floating away with it, being moved wherever the breeze decides to blow. A bit like this…
Luckily, I live with an amazing family and have lots of great friends and an exceptional psychologist. Although this psychologist doesn’t have coffee and biscotti waiting when I visit as I once hoped for. This is just as well, because since last weeks chemo I feel like I drank a pilcher of broken glass. My love affair with good coffee and cafe baked-goods is over. Well, most foods and even now water actually.
Instead, when I visit my psychologist, there is this incredible blue velour chair from the 1970’s that I get to rest in. And for those moments and for days after I leave, holding onto the red balloon is not so bad. I am reminded that people can’t hold on for me. I need to ride it myself.
These visits are allowing me to float with that red balloon. It is true, I am gripping tight to the rope, but I am not fighting it. I am going where the balloon takes me. Travelling though all of the emotion, the grief, the anger, the loss of control, and the rapid change that is currently occurring in my life though this experience of cancer. I am letting the depression procession catch me. It’s okay to stop running from it now. It’s okay to move through each natural process. Being aware of when I am looking at the world through this depressive lens can help me to climb free of it. It’s just a perspective after all. Thankfully visits to the comfortable blue velour 1970’s chair are helping.
This chemo round has not been pleasant. On Saturday I spent the day in hospital. Thankfully not neutropenic, but physically and emotionally bankrupt. Four days after my fourth round of chemo (my first dose of Taxotere) and I required some antibiotics and 6 litres of IV fluid. Some serious pain meds were given to subdue the men with spears that have been stabbing my bones in surprising places; my ankles, my jaw and molars, my kneecaps. These men were silenced by my old friend Endone. And then, ten hours of sleep saw me well enough to rejoin my family at home.
In the depths and despair of the effects of chemotherapy, I am learning to cope. I am learning to acknowledge my feelings. I am learning to go easy on myself. I am learning to turn off the noise and relax. I am learning to survive in this new state of normal and learning not to have expectations. I am learning to take one day at a time and not look too far ahead. It much easier this way and in doing this I am feeling better already.
There are some difficult times ahead. This red balloon will be taking me for a ride for quite a while yet.
Everyone has a big red balloon enter into their field at some point. Some people will unfortunately experience quite a few through the passage of their life. Relationships break up, we lose people we love, houses burn down, we lose jobs, we get cancer. There are the near misses too. But we are all presented at some point with difficult circumstances that result in our own internal struggles.
These red balloons come crashing into our existence when we least expect it. But they don’t last forever.
I always intended to write honestly. So here I am.
I am now half way through chemo and there has been surprisingly a full week of nausea this time. There are mouth ulcers. They come and go. Chemo really is an accumulation of detriment on the body and mind. The immune system, the digestive system, the emotional system. I have had thoughts about not being able to go the distance with this treatment. The dread of three more rounds and the unknown of a new drug Taxotere for the next cycle. Then some new days brings a more positive attitude and I get on with it.
I have lost interest in food. Lost interest in handling it, purchasing it and preparing it which makes the task of running a household interesting. I could be served cardboard or raw oats for the rest of the year and I don’t think it would phase me. Part of me wants to go to the finest restaurants and conquer this disinterest. But it might be a waste of time at the moment.
The “Depression Procession” is rapidly marching my way. Some days I feel like I’m at a blues festival in New Orleans trapped in the crowd, trying to get away from the sombre marching band that is approaching. But no matter where I turn, the music just keeps getting louder and louder. And it’s out of tune.
Something has changed in me. I can’t quite put my finger on it. Four months has passed since my life took a turn in a different direction. When I face people now and interact with them in everyday conversation there are tears welling behind my eyes but thankfully they don’t spill out.
I am sleeping longer. There are moments when I am less interested in being with my family. Yet when I am given solitude I just feel isolated. I am having loads of thoughts about this disease and about the changes in me since Christmas. There are some irrational doubts about whether I will ever get over it. It’s very easy to be swept away with the tide of chemo induced nausea. Let the negative thoughts creep in. I have found myself thinking thoughts such as … I’m such a burden, sometimes it would be easier for my family if I wasn’t here. I’m not working. I’m not productive. I’m getting left behind in life. Irrational thoughts I know. This must be the cancer experience. Four months in and the wheels have stopped moving. The survival mode of running with it has switched off and you are just left to get on with it. With reality or this ‘new normal’.
At a prep info school night I started to cry. Bam! Out of nowhere! Waves of emotion flood in like a tsunami when you least are expecting it. It occurred to me that it is possible I might not see my boys finish their primary schooling. See their sports days or see them come home exhausted from camps. I had to look at my partner and stop this train of thought. And when the prep teachers where delivering their Powerpoint Presentation of the school to new parents, I wasn’t listening to their words, I was looking at their breasts. Wondering it those breasts would always be healthy for them. The triggers are surprising.
I am lamenting all the things I have lost this year. Yet I am conscious of all the things I have gained. It’s just the mind has been wandering towards the deficits a little more often this week.
I have been thinking about these oceans of distance that have emerged with friends that were once part of my everyday life, friends I used to have weekly contact with. People I have not even received a text message from since I was diagnosed. Funny how this disease scares people so much. It is hard on everyone, friends, family, workmates. Staying away is the worst thing anyone can do to someone diagnosed with cancer. I read about this alot and I understand it now.
I’ve got a bucket load to talk about with the hospital psychologist. Four months of stuff in fact. The appointment can’t come soon enough!
All of this is part of a process. The mental perspective is taking a beating. I am acutely aware of this. I will continue to move my body through walking and running when I can and talk to people and even let myself cry when the context is right. Just not at prep info nights.
I will bounce up again. I always do. It might be tomorrow or it might be in the springtime. But bounce I will.
Since Sunday, I have spent time with three very important women in my life and I have broken down in tears with each of them. There has been a mental shift since the weekend of wonderful experiences with my awesome Melbourne friends.
I visited my dear Nanny who turns 90 in April. She never ceases to amaze me. She was 52 when I was born. There was so much living that went on in her life before I even met her and she is still with us. She has experienced her fair share of loss from cancer in recent years. But she is a strong and upbeat lady. Her sunny disposition and genetic luck has allowed her to live a long life, much of it without teeth. In the late 50’s she had a dentist in London remove her ailing teeth to prepare for dentures, except she immigrated to Australia on a ship earlier than anticipated and the dentures never became a reality. Her sweet sunken cheeks have always been the vision of the perfect Nanny to me.
I had a visit from my awesome sister in-law who played lifeguards with my children for hours, rescuing imaginary swimmers from imaginary sharks in our garden. With credit to “The Octonauts” children’s television program, the species of sharks were diverse. From the surf lifesaving tower on the deck they took turns at the command post talking into pretend walkie-talkies. This was to the delight of my eldest son who had not removed his lifeguard cap for three days prior. She cooked us dinner and cleaned our bathrooms before she raced back to the airport for her return flight to Queensland. My brother chose for himself an amazing life partner and mother for his children.
I also had a pop in visit from my wonderful mother in-law yesterday as I frequently do to see how we all are. She has the knack at turning up at the most perfect of moments. She has a kind of sixth sense of sorts which I am eternally grateful for.
There is something very powerful about embracing another woman that you care for when you have breast cancer. The disease is taken very personally. It sniggers at the qualities that make us mothers, daughters, sisters, aunties, nieces, grandmothers and granddaughters. It attempts to sabotage a bond between women. But cancer can never get in the way at that. An experience like this just draws people even closer.
Even as I type this the tears are welling a little behind my eyes. I’m thinking this may be the start of the depression procession of sorts, or it might not be. I just have to watch where this goes and act quickly. The breast care nurse told me not to wait, but to see my GP for some anti-depressant medication. I have never dallied with anti-depressants in my life, but I was given some post diagnosis and one of the side effects made me anorexic. So I understandably have some trepidation. I first would like to try my own ‘walk and talk therapy’. This is where I walk for an hour daily, and talk to as many people as possible about how I am feeling. I am now fit enough three weeks post mastectomy to get out and move again. I can’t yet run as I am still healing and the tissue expander is settling. But exercise has been so beneficial to my moods in the past. I think this might help me immensely. I might also see a psychologist to have a chat, though I think psychologists should have really great coffee machines in their rooms. Maybe even some biscotti or something. That might help too.
Part of me is wanting to rebel against the predictable pathway of the breast cancer experience. I am seeing this common journey that women take on forums and blogs and in the knowing looks of women sitting in hospital waiting rooms. Doctors and nurses are quick to try and solve the problems for you. Often with medication. But it is just going to take time. Emotionally I will fall apart. It is a given. But I will put the pieces of myself back together again. Of course it is easy for me to articulate this at present, as I haven’t yet been gripped by the effects of chemotherapy. But this needs to be ‘MY’ journey. I don’t want to be told I will get depressed. Or my hair will definitely fall out. Or my nails will turn black and fall off. Or my bowel will never be the same. A self fulfilling prophecy effect will have no part in this. I need to let the experience unravel itself.
It has been two months since this cancer wheel started spinning. It has been a bit like being on a spinning ride and the Royal Show. The Gravitron ride was a favourite when I was younger. It looks like a spaceship and you enter and lean against the wall. You are propelled round and round with such force that you just grip on as tight as you can. You can’t really move as the force is too great. And then as it slows and gravity takes hold, you see the people opposite pulling their dresses back down to a respectable place and wiping saliva from their faces. Slowly but surely, everyone is back in the land of gravity, or should I say reality and the dance music stops. Then everyone gets off and gets on with things. Suddenly, since the surgeon, plastic surgeon and breast care nurses dumped me, I have all of this time on my hands to think about what has actually occurred in the last eight weeks.
To add to this reality, today I met the geneticists from the Peter Mac Familial Cancer Clinic. There were two people. Geneticist One was nearly seven feet tall and wore glasses. He was an enormous graceful giant. His height may have instilled in him an interest in how genetics worked and this may have been motivation enough to follow this career path. He reached out with his gigantic hand and softly shook mine. We walked the corridor side by side and went into a consult room. As he stooped through the doorway to enter the room I expected to see a beanstalk and a golden goose. But there waiting behind the door was a genetics counsellor. A stunningly beautiful girl, fresh from university and dressed impeccably. She presented a set of perfectly pursed lips painted with a deep red lipstick. I so wanted to get out my iPhone and take a picture. A new obsession perhaps? For a while I found it hard to absorb what she was saying because of her lips. I kept focusing on how they moved. Then how her wonderfully styled brunette hair framed her face.
I had gone prepared with all of the dates and as much as I knew going back four generations. The information covered relatives from both Australia and the United Kingdom, many of which I have never even met before. Much of this information I compiled by trawling though the work my eldest brother had done on the Ancestry.com website. I am really grateful for his interest in genealogy. I also contacted distant relatives via Facebook, and got some information from my Mum. Armed with these pages of causes and dates of death and existing illnesses I marched confidently into the room. Impressed with the research data, the gorgeous red lips asked me if I was from a research background. I told the lips that I used to be a teacher and lecturer and I love to research. I thought I was just going to supply them with information about my family cancer tree today. Easy.
I was so naive.
I had not prepared for the level of emotional and intellectual drain this meeting would entail. The beautiful woman in front of me was full of information. But there was a deliberate tilt of her head which revealed a kind of pity to me. She obviously thought she knew where my journey was heading. Like she has access to a crystal ball or she has seen this journey many times before. Talking with the broken about their potential mutant genes as they are gripped by this disease, as they search for an explanation as to why they are afflicted. So I decided not to focus on the head tilt anymore.
After looking through the details of my family cancer history, there was discussion about gene faults that if found would put me at a higher risk of developing breast cancer in my other breast. Then they pre-empted a discussion that I might be having with my oncologist in weeks to come, this time about my ovaries. If I test positive for one of the BRCA 1/2 genes, breast cancer women under forty are advised to have their ovaries removed. There was also discussion about multiple potential gene faults merging to have created some crazy mutant genes that can cause young women under 40 to get breast cancer. I don’t really need to know about this. I can’t prevent what is done.
What does all of this mean?
The reality is that only 5 to 10 percent of tests come back positive for some genetic link. Many responsible genes and genetic mutations have not been discovered yet. Though there is certainly a chance that in 15 years researchers will have discovered more genes at work with this breast cancer disease, if genes are even a factor. It is such a complicated matter how diseases occur in some individuals and not others. The ‘nature versus nurture’ theorists are still pointing their fingers and arguing on the sidelines.
I am informed that my blood sample will be stored and will be used in the future by genetic researchers. I enthusiastically offered up litres of blood for this purpose and this drew some laughs from the Giant and the Beauty. One vial is enough. But I find this research to be positive. After all, this process is how the BRCA 1/2 gene faults were discovered and this has benefited many.
Today, genetic testing might assist some breast cancer women and their practitioners to make decisions about whether they will undergo particular treatments in favour of others. It is also a process high risk women (such as those with one or more close relatives having had breast cancer) might explore to assist them to make decisions to prevent breast and ovarian cancer from occurring. There are many women in Australia and around the world who have spent much of their lives worrying about the risk of getting this disease. There is a whole network of women supporting one another through a great organisation called Pink Hope. It can be found at http://www.pinkhope.org.au. These women cling to the results of their genetics tests. I feel quite guilty given I had never given breast cancer a thought and have been free of the worry these women have had to endure, and yet the disease found me anyway. Here I am, today, with a genetics counsellor talking about breast cancer genetics.
In my case, the decision has been made, given my cancer is multifocal and aggressive there will be a second mastectomy, so I don’t need the results of a genetic test to tell me what I should do. There will be post mastectomy radiotherapy and genetic testing is not a useful indicator for whether to do this. But it might clarify the ovarian issue down the track. If I am negative for BRCA 1/2, it is unlikely the ovaries will need to be removed. This is a really important decision, as removing ovaries prior to menopause can lead to a whole array of health issues in young women such as osteoporosis and heart disease. But if faced with having a BRCA 1/2 gene with a hormone receptor positive breast cancer and preventing ovarian cancer I know what I would chose.
After almost two hours of discussion about genetic testing, information, privacy issues, disclosures, pros and cons, ramifications of it moving forward, etc, I am clear that genetic testing will be a good thing for me and my immediate family, but I will talk at length with Mr Cool about this. I also like the idea that I am contributing to a research data bank.
There is just one small matter to be sorted. Before I can sign on the dotted line, I have to see what the ramifications on my existing life insurance policy are of genetic testing, as it can substantially alter or even void some policies. So I have to look into this before the signing and supplying of a blood sample. Some types of insurers don’t like the risk associated with someone who has tested positive for some genetic predisposition. Bastards! Luckily my ‘future self’ told me to take out a life insurance policy a year ago as I had no current coverage through my superannuation as a stay at home mum. I would be “up shit creek without a paddle” if I wanted to take out a new policy now. Thank you again future self.
Down the track, my family might like to know the results of this test. There is no urgency for any of them now. But if I have any genes responsible for this cancer, it might be beneficial for one of my brothers to be tested. If he has the same gene then as parents, they may impart such information to allow their children to make a decision to be tested when they are adults. Likewise, all of this applies to our own children, my cousins, and my cousins children. This is all irrelevant at the moment but it is worth giving some thought to future possibilities.
Genetic testing is a highly sensitive and deeply personal issue. It does have quite large ramifications for the future. People can use the knowledge about genetic predispositions in many ways. Some might live proactively and live a healthy lifestyle and be screened. Some might live in fear of developing a disease they have a gene mutation for. Some might chose a route of cowardly defeat and live a lifestyle detrimental to health as if they are saying “whats the point?” Some might not ever give their genetics a thought. Of course, there is also the possibility that one could have a genetic mutation for a particular disease and it is never activated in their lifetime. There are no guarantees with anything.
I was glad I had the opportunity to sit with the Giant and the Beauty for two hours. I look forward to my next meeting as it feels like I’m back in the dating game.
I am home.
Mother’s guilt has been quietly bubbling away in the back laboratory. It started with the diagnosis six weeks ago. First it appeared as grief from the impact of my lost health on my children. A kind of lost opportunity cost is to be paid for all of the wonderful experiences in 2013 that won’t go ahead. It is not what I would ever have wanted for my kids and husband, or their grandparents. What was to be a year of healthy misadventures including play, travel, athletic conquests, my first time snow camping and skiing with my oldest boy, has been replaced with the possibility of 5 surgeries in Melbourne, 3-10 months of chemotherapy, maybe some radiotherapy for good measure, fatigue, pain, laying around and telling them Daddy will help, or Nanna can do that, or maybe my friends will do that when they visit. They will see me be sick, see me cry, see Mummy lose her hair, see Mum and Dad argue as they juggle the altered dynamics of home and parenting roles.
I might have to miss going to Port Macquarie in May to support hubby in his tenth Ironman triathlon finish. He proposed to me when he crossed the finish line of his first Ironman back in 2004. My Mum just happened to be there that moment. All day, he struggled through cramping and vomiting and every time he saw us he asked me if I would make sure I had his bag at the finish line. I never knew I had carried round the engagement ring with me all day. I have been at every one since and as our family has grown, so too have our children.
More annoying to me than the possibility of being unable to support him in this race, is the thought of missing the week of camping we had planned for our children. A week camping with their uncle and aunt and their three cousins in Northern NSW. I will make sure it does go ahead. I hope I can go, but the thought of me not being part of the experience is playing on my mind. Don’t worry about things too far ahead I keep telling myself. One day at a time remember.
To add to the dose of mother’s guilt, both children developed a bad throat and cough last week. Of course it was the night before I went to Melbourne for surgery. So not only did I leave, I left when they were sick. There have been nights when they haven’t slept. Coughing wakes them and they cry. Our youngest just wants to be held, so he has spent every night in bed, one night between Nanna and Grandad, and then the rest of the week between his Dad and his brother. He is not happy sleeping unless he is the filling between two pieces of sleeping pumpkin sourdough.
When I returned home five days later, my eldest son took it in his stride. My youngest not so much. It has been a week since he cuddled me with his usual affection. There are the physical barriers of ghastly drainage tubes that I carry round in a bag and the mental barriers as well. When the honest toddler came to visit me in hospital three days after I left him at home sick, he would not look at me, he did not want to be put near me. There was a bit of punishment for mum to be dealt out. She abandoned us last week and left us home.
Since arriving home there has been more of the same, Dad is the one he goes to for everything (Which at this point isn’t such a bad thing). Dad is the one to console him. I am like a stranger. I have been moved to the spare room as the marital bed has been taken over by two sick children and a squashed on the edge, contorted husband. Too much noise and movement in there for my liking. So the spare room it is for me.
Hubby is at times buckling under the weight of all this new found pressure of kids wanting him 24/7. As much as Mr Cool can buckle I suppose. I am sure he is also worried about the things he isn’t able to achieve at work. Then there is the missed sessions of training for the Ironman triathlon that is just eleven short weeks away. Training for these events normally keeps him in tip top shape emotionally and physically. He doesn’t know it yet, but I think we might benefit from some couples counselling once the impact of this journey becomes clearer. (I can feel his eyes rolling from another room as I type this!) What is it with men and their dislike for communicating about their feelings?
The flip side of the negative opportunity costs of cancer are some wonderful gains. There will be lots of positives in this experience. Though hard to see now, we might come out the other side of this much closer as a family, we might be grateful for what we have, the small things will mean a lot, we will cherish our time together. Other positive experiences will open up. It’s not what I wanted for my children and family, but it is what it is. We will try and make the best of it.
The other day in hospital I got a visit from a dear friend who I went to university with 14 to 17 years ago. In that time we shared a miners cottage for a while. It was built in the Goldrush days of the 1880’s. Back in this time men grew on average to 5’4″ in height. The door frames and ceilings were just above our heads. I remember us living off a student diet and I used to laugh at him when he used to eat a five bulk pack of two minute noodles out of a large bowl in one sitting. Across all of that passing time, our humour and conversations have not changed, racing along without even a second to catch a breath. He happens to now be a firefighter at one of the largest metropolitan fire stations and as a fluke, it was just two blocks from my hospital. So with schedules on our side, he was able to show my boys around the trucks and station. Something they will cherish for a long time.
Had cancer not happened to me and my family, I wouldn’t have seen him for another five years at least and my boys would not have had this awesome opportunity. So cancer initiates some wonderful opportunities and learning experiences as well. Then there was a visit from a student I taught when I was a lecturer 11 years ago. On her visit, she stole my children’s hearts and then told me some of her internet dating stories. Last week also brought my closest, long term friends in to see me as well. Very special moments.
The events of the last six weeks have opened my heart to just how many wonderfully supportive family and friends I have. Our doorstep has seen the arrival of not one, but two juicers weeks apart from the same people, (incredibly the first to try, and the second, a gift to keep) and I have been given my own pre-purchase intimate iPad demonstration. There have been so many flowers delivered our house feels like a florist. There has been an array of home cooked gourmet meals, get well cards, gifts, and lego mini-figurines for our children. There have been lots of gentle hugs, messages of support, offers to mind the kids (which is the most important job of all). A whole community has opened up that I shamefully never took the time to tune into before. Of course this also includes the hundreds of keyboard warriors who are following me and pulling me out of any dark places I might be heading towards in the coming months.
I am acutely aware of depression sneaking up on me. When it comes, it will be a ‘depression procession’ of sorts. I am also on guard for signs of it in my partner and loved ones. What is surprising about having cancer is once you are okay with it, you begin to tune in to how it effects other people. I was surprised to see one of my dearest long term friends upset when she visited me in hospital the other day, this is a friend who visits hospitals all the time for her profession. She said it was different when it is someone you know. It made me feel like I had been a little selfish holding onto it as only my experience or journey. The impacts are far reaching.
We have entered another cycle of waiting for results. There has been the waiting for diagnosis, waiting for the results of lumpectomy and sentinal node biopsy, waiting for the results of the bone and organ scans (which came back as ALL CLEAR, so nothing major lurking elsewhere at this moment!) and now the waiting for the results of the mastectomy, nodes and nipple scrape and freeze. In all of this you just want to have an idea of the treatment that lays ahead, especially with respect to the chemo regime. It has been one and half months and I, we are still waiting.
Friday. Friday will tell us.
As I type this, my youngest has come into my room to give me a cuddle because they are going out. Day seven and I am back in the ‘need to cuddle Mummy’ books. The oldest is very excited he is off to bush kinder this morning after missing the week with his cold. I have asked him to try and remember some of the details so he can tell me all about it when he gets home. Always, he has a great time, but he often says “I can’t remember what happened” whenever I ask him how it went.
Before leaving he took a photo of me on the iPhone. A portrait of me in these homecoming days. Drains, pillow and the little expander that couldn’t. The breast you can see is the unaltered version. The pillow is needed to alleviate any pressure on my chest or armpit.
When the oldest returned from kinder, he told me about the kid that pushed him over today. Last week, this would have been upsetting. But today, he thought it was funny. This afternoon, he asked Daddy to give him a haircut. He asked for a mowhawk style and Daddy obliged. He is growing up.