I always imagined life after Dylan’s treatment would be hard, the reality is that however we believe something might be we never really know until we actually live it.
It’s been an intense few weeks.
The groin pain (which has thankfully gone) that Dylan experienced 3 weeks ago sent me straight back to some very dark places.
Then he spiked a temperature that took over a week to go away, that was swiftly accompanied by a horrendous cough, we took him to our out-of-hours doctor. They said it was “nothing to worry about”.
He seemed to recover last week, just before half term & after starting a course of antibiotics & steroids that our regular GP prescribed.
However, his temperature returned with a vengeance on Saturday, he woke up vomiting on Monday, struggled to understand anything we were saying to him & couldn’t stay awake.
We took him to A&E.
They think it’s either the end of a bacterial infection or the beginning of another one. His blood markers are up but it’s “nothing to worry about”.
His chest X-ray from last week shows a bit of something, again it’s “nothing to worry about” & he may have been sick due to the lining of his stomach having been affected by the antibiotics he’s just finished, but that’s also “nothing to worry about”.
We were given open access to the children’s hospital for 48 hours…just in case.
This feels so reminiscent of how it all started back in September ’16; the unexplained temperatures, the random vomit session, the fatigue, the aches…it all eventually added up to the fact that he had cancer & it took 3 months to diagnose him.
Now I have to get my head around the fact that what he’s experienced this last month isn’t cancer, I have to find a way to see this as some random “harmless” infection (if that’s what it is) & I also have to find a way to believe that I have “nothing to worry about”.
His cancer didn’t show up in his blood markers until it was almost too late (the consultants have told us there’s no way of knowing if it comes back unless he starts presenting with the random symptoms we spend our every waking moments looking out for).
If he hadn’t had a tumour in his head that revealed itself via his left cheek we would never have known that he had cancer at all…well we would but, you know…
He had water on his lungs when he was diagnosed, again, this would have slowly accumulated over time (common with metastatic cancer) & initially would have looked like “nothing to worry about” on an early X-ray.
We took him to the doctor so many times before he was diagnosed, but there just seemed “nothing to worry about”.
We took him to A&E before he was diagnosed & were told that there was “nothing to worry about”.
We did everything we’ve done over the last 3 weeks & whether or not it is actually a bacterial infection will always play on my mind…we’ve been told to “watch & wait”.
What people don’t understand is that that’s all we do, we watch & wait every single day.
We will watch & wait for the rest of our lives.
What’s struck me now, a year & a half after treatment has ended is the sobering realisation that this process is going to happen every single time he gets ill & I’m not entirely sure how//if oncology parents reach the “nothing to worry about” plateau…how the hell do we get there (rhetorical question)?
I remember pre-diagnosis how worried I’d get whenever he was poorly…I don’t know many parents that don’t worry when their children get ill.
People tell me it gets better; it doesn’t get “better”, I just get used to having to accept that this is life now; that I will sporadically be flung from dappled light straight back into the dark places without warning; that I will inevitably have to endure the white noise again; that I have to accept that all the “symptoms” may not necessarily be cancer symptoms but simply caused by a virus; that my child’s mortality is in my face 24/7; that I will frequently be on the verge of tears; that it takes chunks out of what I felt was my recovery process; that my recovery process is basically a holding cell from which I’ll never escape.
I have no choice other than to accept it & find a way to live with it, just like I had to accept & find a way to live with Dylan’s cancer.
Here’s what many don’t see about oncology parents & their children, the fact that your child’s cancer treatment is over is far from indicative of cancer actually leaving your life.
Someone said a couple of weeks ago that the hospital should do all the tests on the child as a form of treatment for the highly concerned post-treatment parents, but they don’t do that & of course I understand why.
Someone also told me a couple of weeks ago that they hadn’t seen me in this state for a long time.
What I’ve realised is that we will continue to have these hugely intense moments & that each knock takes even longer to get back up from, I’ve started to wonder whether I should just stay down.
I understand why some people choose not to get back up & furthermore realise that in staying down they’re not failing, they’re preserving themselves; the less noise in their lives, the less “extra” they have to deal with because they are already dealing with so much unseen stuff.
Society believes that as Dylan doesn’t have cancer anymore, he’s back to being a “regular” child who will get “regular” illnesses & be treated in the “regular” way, which interprets as I’m now back to being a “regular” parent of a “regular” child & just as it was pre-diagnosis I apparently have “nothing to worry about”, but only a regular person would believe that’s how it works.
I don’t know how to get back up, I don’t really know if I want to…but I’m sure I will.
What I do know is that I just don’t know how to have “nothing to worry about”.