Although only a couple of weeks have passed since I last wrote, it feels like too long. It’s not that I didn’t have anything to say, I have SO much to say; and that’s been the problem. I have been having many conversations with myself about a variety of things from family, to work, to the future, to writing, to charity work and so on. My head (my psyche) has been a smorgasbord of thoughts, ideas, wishes, goals and worries. It normally is actually, but it feels like its all been ramped up a few too many notches and I’ve had to force myself to spend some time to organise the thoughts properly. The theme that continues to run through is the science of behaviour and of the mind; Psychology.
I studied Psychology at university over 15 years ago now. Like many of my colleagues on that course, after graduating, I was sucked in to the media hoo-har about there being no jobs for graduates. As such, my career to date has been in Sales, a real anti-climax, haha! I don’t regret my choices but do wonder what things would have been like if I’d pursued my subject as a vocation. Regardless, the human mind has always and will always interest me.
Back in 2014, when we first entered the world of oncology with Jack, we had also started to spend a lot of time on ‘personal development’ (‘self help’ if you’re of a certain age). We were introduced to books, audios and seminars from a variety of entrepreneurs, motivational speakers and gurus (I hate that word). What we didn’t know was that all of these new ideas and stories were going to come in really handy for helping us to ride the shit storm that hits when your 3 year old becomes an oncology patient.
You see, the human mind is so powerful. If you put shit in, shit comes out. When you’re thrown in to ‘Oncology World’ there are all sorts of absolutely AWFUL things that you have to learn and understand; a whole new vocabulary, new equipment and a list of dos and don’ts. There’s no dressing it up, it’s not pretty. You can’t control that though. It is what it is and there’s a whole army of clever sciencey-type people who know what to do to drag you through the practical bit, one way or the other. This is whether you are the parent, carer, friend or relative of the patient of course. As Jack keeps pointing out, I can’t comment on what it’s like to be the patient ……because I’ve never been one….maybe I should encourage him to write a blog of his own then?!
Anyway, what I believe and what we have proven as a family team is what you can control is how you DEAL with the shit. How you think is totally in your control, if you will allow yourself the time to learn (and enough wine to drink) you will be able to open your mind a little and find some really good coping mechanisms.
We’ve immersed ourselves so much in mindfulness and the practice of having a positive mindset that we are now total negativity vultures. We can spot those vibes a mile off and will shoot each other a knowing look when we feel a conversation is heading in a particular (unfavourable) direction. I’d go as far as to say we’ve occasionally been harsh towards people whose choice of words hasn’t been in line with ours. To give an example, we both pick up when anyone (doctors, nurses, friends or family) say things like ‘Ahhh aren’t you feeling well today?’ or ‘are you feeling sick?’ or ‘you look tired’. These are remarks that many of us use day to day but we have come to learn who BIG an impact they can have on Jack. He’s very emotionally intelligent, he also knows when he isn’t feeling good and knows how to articulate this. However, statements, or projections like these (although absolutely well intended) act like little weeds in his mind, he is 7 years old remember. I will guarantee that if you tell him he looks tired, he will say to me within 10 minutes that he’s feeling tired, even if he had just woke up and was feeling full of energy before you spoke.
Another example is related to the detailed account some of the nurses and doctors feel is necessary to tell him about the side effects of the drugs he’s taking. I spoke to a friend about this the other day and we agreed that hardly any adult reads the little flyer in the packet of paracetamol they take regularly, so why is this different? If anyone’s interested in the possible side effects of paracetamol this is what it says on the NHS website, kidney failure is one….will you stop taking them? The way I see it, for a child who already has to process so much change and upheaval, it’s just not necessary to fill their heads with the ifs, buts or maybes of side effects. It’s important for US to understand so we can keep our eyes out and deal with them as they arise but he does not need to be THINKING about something that may not happen. I trust the clinicians and scientists but sometimes wonder if there’s a lack of common sense?!
I truly believe that without our supposed ‘positive outlook’ our ability to cope, to trudge on and to ultimately overcome this bump in the road would be in serious doubt.
As well as the fire-fighting we have to do with family, friends and doctors there’s also the mind-altering steroids in the mix which conjure a series of strong emotional responses in him. It seems that at the moment Mummy is the one mainly in the firing line for these outbursts (I’ve been growled and spat at this week, anyone who knows me personally will appreciate that there aren’t many people who can do that and live to tell the tale!). I am eternally grateful for Rioja & bribes.
Another Oncology Mum wrote this brilliant account of what it’s like trying to keep things normal in an oncology house. Trying to stay on top of discipline, morals and normal parenting while having to use regular bribes and promises to get the meds/needles/vegetables in. This is another example of the psychological battle faced by us Oncology parents. How am I going to undo all of these bad habits I’ve created and how can I dispose of these THOUSANDS of slam attax wrestling cards his new/temporary obsessive personality has collected…..AAAAGGH!
While the subject is a serious one I do make some of these comments with my tongue firmly in my cheek.
What is true though is that Jack is a really clever kid, it’s difficult to get much past him without him questioning it, of course this is such a great quality; however we sometimes just can’t answer. This is why we got him to write his questions down for the consultant. And although our house is a shrine to personal development we decided it would be useful for him to spend some time speaking to the Paediatric Clinical Psychology team who have committed their careers to levelling with kids like Jack (I’m sure they would put it much more eloquently than that too!). As his parents we didn’t want to unconsciously suppress the deeper feelings he is experiencing and we want him to be in tune with himself both mentally and physically. He needs to be in control of that to help him understand what’s happening & to overcome the experience with minimal psychological shrapnel.
When the idea of him meeting someone from the psych team was presented I have got to admit that hesitated a little, I wasn’t sure it was needed and worried maybe it would label him (us?) but I’m so glad we did. I bet people are imagining a smokey side room with a chaise lounge and a pensive looking middle-aged white man staring out of the window with his fingers pressed together?? The lady we saw from the team was far from it. She was a similar age to me and asked a series of really open questions which he answered beautifully. She gained his trust and let him see it was OK to share how he was feeling WITHOUT leading him to answer in a certain way. Bloody marvellous. She also offered to spend some time with us separately from Jack if we felt we could benefit. At the moment we’re good but it’s handy to know that this level of support is at hand should you be in our situation and feeling the need to access it.
We’re now almost at the end of the second cycle, a quarter of the way through the induction treatment and things are good. The new normal has been established and apart from the odd roid-rage we are riding it pretty well together.
I’ll do my best to write again sooner but I am also conscious that the potential to burn out is lingering. Healthy mind, healthy body, healthy soul.