Scott’s cancer treatment started last Monday, and all of a sudden we’re nearly half way through the chemo and radiation. We’re going with the flow pretty well. Scott certainly is and after a shaky start I guess I’m rolling with it too. Leading up to the start of treatment I kept finding myself in tears on the couch while Scott cooked dinner, went for rides and got on with life like nothing had changed. It was a tough time, and confusing to boot. Surely the person with cancer has more to be upset about?? It’s odd, being the partner of someone with cancer, especially when they’re not even sick yet. There’s a weird mix of emotions to contend with, from sadness about what Scott’s going through, to anxiety about what the future holds. Some days I’m overwhelmed by the details and other days it feels something like survivor guilt. For days I struggled to do anything and spent hours lying on the couch, lethargic and dispirited. A kind of depression hung over me and I didn’t want to feel better. The sensible me said ‘get up and go to yoga’ and the cancer wife said ‘bugger off I want to be miserable’. I know there was a little bit of subconscious in there saying it’s not OK to feel good when your husband has cancer. I’ve moved through that stage, and several others since.
Right now I think the overriding feeling is one of calm acceptance. There are up and down days, but mostly I feel like we’re actually pretty lucky. Scott will emerge from this experience a changed man, but what’s important is that he will emerge. We all will. I can already see how all of us, kids included, will grow and become better people through this experience. What we lose will be more than made up for by what we gain. I’m not sure how much Scott needs to gain to make up for a lost rectum, but I’m hoping there’ll be enough for him in the trade off (??!). I recently connected with a woman in the UK whose husband was also diagnosed with Bowel Cancer. We had so much in common; the two of us work in similar fields, with young kids, blogs and sick husbands. We started to exchange messages of support. Then I read her most recent post and my heart broke. Her husband’s cancer has spread. Everywhere. He can’t have chemo, and the cancer is inoperable. All they can do is make him comfortable and make the most of his final days. Last week they moved him into a hospice. I can hardly bear to think about what they are going through in that family. We are the lucky ones.
In a practical sense, we have this thing under control. The stars have aligned to make it all work. In fact you’d almost think we knew it was coming and prepared accordingly. Last year we worked little and played a lot. We gave extra time to our community and helped out with local causes. We took too many family holidays and spent a lot of time together, both as a couple and with the kids. It was awesome, but we spent a lot of money and needed this year to be quieter. As 2014 drew to a close we talked about making 2015 a quieter year; a year of more ‘being’ and less ‘doing’. This felt important, especially after I completed the amazing Being The One course. Being more authentic with emotions was a priority for me. In February we had a big clear out at home and got rid of all the clutter and stuff we no longer needed. We felt clear and refreshed and ready for anything. Just before Scott’s diagnosis I was offered a few months of extra work.
And then cancer came back. It was a blow, certainly, but we haven’t had to cancel any plans or change our approach to 2015. It’s still a year of slowing down; of spending our family time on simpler things. I decided to accept the work, so financially we will be able to cover Scott’s time off. Our home and our calendars are clear of distraction. It’s a year to practice simply being, of allowing life to be what it will. You wouldn’t meet anyone as perfectly ready for this as we are. And yet I’ve struggled. I do think I’ve figured out why I’ve found this so much more difficult than Scott has so far. While I constantly project myself into the future, he exists deeply in the moment. If he’s fine right now, he’s fine right now and that’s all there is to it. If I sense the possibility of something on the horizon, I’m immediately living it, in the present. (Yes, you can guess which one of us has some work to do!). For me, the waiting has been difficult, especially before we knew the prognosis and treatment plan. Naturally I imagined the worst, and some days I lived in those unbearable scenarios for hours or days at a time. It’s better now that we know what lies ahead. It’s not awesome, and some of the details are still fuzzy, but we have a pretty good idea of what’s coming.
Strangely enough, I’ve found it challenging to deal with all the incredible support we’ve been offered in the last few months. One day I’ll be doing OK, then someone will offer help or turn up with food for the freezer, and I’ll get all wobbly and fragile. Life is not much different to before, but all these people suddenly want to do nice things for us. It feels, somehow, undeserved. Like we’re cheating the system. Yes I know! I’ve had this out with my psychologist and I know it’s ridiculous. The other day Scott asked me how bad it would need to get before the support felt warranted. I couldn’t answer him. In the end I’ve had to admit that cancer is actually pretty bad. Sometimes just the idea of it weighs so heavily I can’t bear it, yet I continue to doubt the authenticity of those feelings. Later as I’m working, cooking dinner or out for coffee, life feels so normal it seems I was just making a fuss over nothing. I’m still finding my way in this journey of emotional authenticity. After a lifetime of playing busy and upbeat through difficult emotions I don’t really know how to recognise them, or sit with them. I’m doing my best to just feel what I feel in the moment. Sometimes that means I’m fine and sometimes that means I’m heavy on the couch for a few days. Sometimes I have to drink a lot of wine…. what can I say?? Emotional authenticity made me do it 😉
Anyway the dreaded future has arrived. Chemotherapy and radiation are in full swing. Scott is already nauseous (or nauseated, depending on your point of view) and slightly more tired than normal. He’s taking the occasional nap and feeling a bit ragged around the edges some days. This is a shame, because we were told the side effects probably wouldn’t peak for 6 weeks or more, possibly even after the actual treatment finishes. For him to feel nauseous within 24 hours does not bode well for things to come. Oh wait I’m projecting into the future again – whoops. The pharmacist at Peter Mac gave him anti-nausea medication and after a few days of mild nausea Scott has started taking it. ‘Don’t be a hero!’ they told him. Apparently it’s better to prevent the nausea than to try to fix it after it sets in. He’s still my hero, even if he takes anti-nausea meds. He’s also been given gastrostop for diarrhoea and sorbolene for skin irritations. So far they haven’t been needed. The pharmacist also suggested gastrolite and a commercial mouthwash (ulcers are a common side effect of chemo). All of this stuff triggers the most intense frustration in me. As if cancer treatment wasn’t bad enough, why add more crap to the cocktail? I felt better after I’d made a nice natural mouthwash with bicarb soda and essential oils and replaced the gastrolyte and sorbolene with himalayan salts and coconut oil.
You probably think I’m waging a pointless war. Sometimes I do too. They’re pumping Scott full of toxic chemicals and zapping him with radiation every day and I still care about what goes into his body? But I do care. Scott’s diet is still the focus of most of our days. He needs to eat more than 16,000 kilojoules every day, and they need to be the right foods so he stops losing weight. It’s almost a full time job; planning, making and tracking all of that food. Thank god for all the amazing friends and family who are stocking our freezer with delicious home made meals and snacks. Our efforts do pay off; Scott has been gaining weight in the last 2 weeks and feeling really good. It’s slightly chaotic and I’m in tears almost daily over the crazy food needs of this family and my obsessive attitude to sourcing and producing it all. People keep telling me to let go and stop worrying about ‘little things’ like additives, packaged products and processed food. But those are not little things for me. I don’t know how to let go and I battle with it daily.
I am being stretched though, and things are starting to give. I bought fish fingers last week and the kids are having ham and cheese sandwiches for lunch. Processed ham. From the supermarket. Arrrgh my heart is breaking for those piggies. But it’s true that something has to give or how can I sustain the energy to be present for myself and for my family? It’s making me cry just to write about it. But let’s face it, fish fingers and ham do not a bad parent make. The kids are happy and well fed and that’s enough. On the plus side, we hired a cleaner this week and that is NOT making me cry, oh no not at all! It’s great having a cleaner! A clean house, happy kids, supportive friends and family, interesting work and an awesome husband who continues to be my hero no matter what happens. It aint so bad. I’m crying as I write this. Who knows why, but hey that’s how I roll these days.
<Image by Alex Leung>