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.