Here’s the thing. I have a good game face. Unless you really know me, and by that I mean either carnally (just the one person for the sake of clarity) or are related to me (by blood or kinship), you might assume I’m generally well, that my illness recedes into the background of mine and my family’s life. This is often not the case and I feel I need to be more honest and vulnerable about when I feel like crap. Part of the game face thing is for me. A very wonderful badass lady who sadly died of her cancer told me “no matter how poorly you feel, get up, get some make up on and find something nice to wear”. Basically kid yourself into feeling better. And you know what, that does work, up to a point.
For example, a few Saturdays ago, I turned up to Pukeys 10am football with a full face of slap, including tight lined eyeliner, two coats of mascara, eye shadow, brows etc. I looked ok. In fact, I looked quite passable. To most people, I was bouncy, energetic and vivacious. But I had literally dragged my ass out of bed, where I had been for the last 14 hours, did the soccermum bit and was back in bed, feeling sick as a dog by midday. Woke at 1700, vaguely contributed to Wakey and Pukeys yea and bedtime, and was back asleep before at least one of them.
The thing is, it’s not actually the cancer that makes me feel ill, although clearly that doesn’t help. As I’ve talked about before, its mostly the after effects or side effects (aka side effucks) of treatment that make me feel shit.
The leaflet that comes with my tablets is so lengthy, it’s like an old fashioned OS map. Luckily for me, I seem to be dodging the real nasties (think death, stroke, fistula) but the side effucks, although pretty common, are debilitating. I sometimes can’t do the school run as I am struggling with what Pukey helpfully terms “mamarrhoea”. Don’t want to have (another) unfortunate accident. The nausea puts me off eating so I don’t. Then I’m exhausted. The soles of my feet and palms
of my hands hurt, I can feel dizzy, I have a weird sore throat which prevents me shouting (unhelpful as a parent), palpitations. Its a veritable smorgasbord of shitness.
After my last blog, I finally parked my game face and ‘fessed up to the Wizard of Onc. I asked her about stopping treatment. I was feeling that shit & low. It was a short blunt conversation which basically went something along the lines of “I have patients who appear reasonably stable, their disease isn’t progressing. They stop treatment for a few weeks (so they can have surgery or because they need to recover from severe side effects.) Suddenly their cancer goes crazy and we can’t get it back under control. And then they die. This has happened in a matter of weeks”.
Ok so stopping treatment would be a very bad idea. Unless I want to risk being dead. Which I most certainly don’t. I then asked a slightly better, more intelligent question which was; how long would she be comfortable with me being off my tablets. Answer: “2, maybe 3 weeks. No more”. Ok. That’s about 10 days longer than I’ve had off treatment in coming up to three years. I cried, we talked, she told me to book a spa break, to increase my exercise, to get outside in the daylight every single day, told me to spend time with people who love me (not cos I’m dying but because love and being loved is healing). She looked at her computer screen once to check some bloods. So many drs spend the entire consultation, staring at their screen and typing notes as they go. Not my Wizard. No. She listened, really really listened. And I felt heard. She validated that it’s ok to feel sad and utterly pissed off. I’ve been dealt the wankiest of hands.
So I had 12 days off in the end. I could have had the full 14 but…I started getting a very noticeable uptick in pain in my left hip and left thigh bone where I some metastatic deposits aka cancery bits. It was intense enough at night to warrant some swigging of morphine So I took the decision to start back on treatment. Don’t want than cancer getting out of control.
But let me tell you: those 12 days were glorious. Cornflake nose virtually disappeared. Sore mouth was no more. No mamarrhoea. No queasiness. I only had 2 nana naps in 12 days (and one was because I had a huge glass of red wine with lunch). I put on 2lbs. I ate regular, normal meals. I had so much energy. It made me realise I’m not a lazy hypochondriac using cancer as a convenient excuse to do fuck all.
The children are very accepting of when I’m out of action. I guess they don’t know any different but man alive, I feel guilty. It such a waste of life lying in bed or being attached to a toilet. Since my break, I’ve felt like a proper Mummy for the first time in a while. We’ve laughed loads, I’ve cooked decent meals and it makes me realise what a barometer I am for the for family. When I’m up and bouncy, we are all much happier and energised.
Being back on the tablets is ok for now. My body has had a chance to reset and recover. The pain in my hip and leg is gone. It’s utterly incredible how fast the treatment works but it’s equally as shocking how quickly my cancer makes itself known off treatment. I have to accept I’m on treatment for life. Without treatment, I will die. That’s the reality and my conversation with the Wizard of Onc was a timely and salutary reminder of this. Whilst I’m fortunate to be on a really effective treatment, I also have to accept that there will come a point when this treatment will stop working. The cancer will outsmart it. I just have to hope something as effective as Lenvatinib comes along and I will be able to cheat death for a bit longer.