C is for…Choice

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Quite simply cancer elicits very exacting, black & white choices: take the treatment & hope for life versus don’t take the treatment & lose hope. In truth cancer doesn’t always allow the luxury of choice, often it just takes over & leaves you with no hope at all.
We were lucky we had the opportunity of choice: procedures & a treatment plan that will go on for the best part of three and a half years.
There’s nothing tangible within this process, just a speculative withering hope that it all just works out for the best. Dylan didn’t choose cancer, nobody does.

Since 16.12.16 Dylan has undergone a biopsy & a bone marrow test, a Hickman line insertion, twenty two lumbar punctures & a Hickman line removal with port replacement.
That is a total of twenty five procedures all with general anaesthetics in just eleven months.

Each time he has a surgical procedure a parental consent form has to be signed. You never get used to signing consent forms; the problems that may arise from the anaesthetic alone are enough to deal with, throw childhood cancer into the mix & there’s a mine field of thought processes to pick your way through each & every time.

Twenty five times we’ve had to sign consent forms; twenty five times I’ve held him on my lap & watched his body go limp & his head roll as the “magic milk” sends him off to “sleep”; twenty five times I’ve waited to see if he comes round; twenty five times I’ve been so relieved that he has; twenty five times I’ve held a sick bowl for him as despite being given anti sickness meds he still can’t handle it; twenty five times I’ve laid on the hospital bed holding him as he regains full consciousness. Coming round is not his forte. Some kids are up & at it straight away but Dylan is always sick & then understandably teary. If a tube has been inserted down his throat he barks like a seal & has trouble talking for an hour or so. He anticipates coming round before he goes under because he knows how crap he feels when he starts to wake up. So before we’ve even left the house on general anaesthetic days we’ve already got a sad & objectionable child. On these days there is always the promise of a small gift once he comes round…it helps us all.

There are still countless procedures for him yet to undergo & for us all to endure.

The most recent procedure was his Hickman line removal followed by a port insertion. His Hickman line needed to be removed for a couple of reasons – due to a suspected line infection (which is most likely why he has been in & out of hospital for the last few weeks) & also because basically it’s just not sustainable to have a foreign body protruding from your chest for three & a half years. So far he has received blood transfusions, platelets transfusions, hydration & fifty separate rounds of various intravenous chemotherapy treatments through this line.

We are told that this particular surgical procedure will take an hour. Dylan is wheeled by a porter across the hospital & up to the children’s theatre suite.

At 15.45 I walk him into the operating theatre & sit him on my knee. Anaesthetic is administered & I watch him go, feel the weight of his unconscious little body increase, lift him onto the operating table with the help of the surgeons & anaesthetist & kiss him on the forehead.
I hold his face, tell him that I love him & then I have to walk away…for the twenty fifth time.
Walking away goes against every bone in my body but I have no choice.

We wait back over on the oncology ward.

At 16.45 the hour is up but I know that there’s a good fifteen minute tolerance either side of that hour, so we wait seemingly forever in what would appear to an onlooker like quiet calm.

At 17.40 I go to see the nurses, still “looking” like I’m calm.

The interaction between a worried parent & an experienced nurse is a bit like playing Noughts & Crosses with a small child (the parent obviously being the small child). You go to move one way but they’ve already anticipated your move & counter you with a move they prepare as they watch you approach. I already know the grid is filled with crosses but I go ahead; I choose to ask the question they’re already prepared for (the one about how long the procedure is meant to take).
They reply with a sympathetic placation that they & I both know will go nowhere in terms of appeasement. We conversationally dance about like this for a couple of minutes & I retreat back to clock watching because I have no choice.
Pace. Sit. Stand. Repeat.

The overrun lasts an hour & ten minutes.
My adrenaline levels (which were already above average when I woke up) are now at a constant heavy heart beating, knee shaking high.
Within this time, I have had every negative but potentially realistic thought known to man running through my mind.
The first being that something must have gone wrong. The second is what has gone wrong? Which is simultaneously countered by the possibility that absolutely nothing has gone wrong at all.

My thoughts synchronise thus:

Has he reacted badly to the anaesthetic?
Everything is ok.
Has the procedure not worked?
Everything is ok.
Has he woken up during the procedure?
Everything is ok.
Has he had a heart attack?
Everything is ok.
Is he still alive?
Everything is ok.
Is everything ok?

At 17.55 we hear Dylan is in recovery & that we can make our way over to theatre.
Palpable relief is accompanied by yet more questions; if something had gone wrong where would they tell us? Am I on my way to bad news or “good” news. In my mind, the fact that nobody is escorting us over to theatre is a positive but as you can see, my mind is not really something worth relying on at times like this.

At 18.00 he’s ok, he’s coming round. He can hear us. He doesn’t move or open his eyes but I know he’s ok & immediately I want to scoop him up, to hold him & kiss him. Obviously I can’t because I have no choice…he has just had surgery, he’s like a mini zombie & is completely disoriented.
We settle with stroking his cheek, his head & his hands, telling him that everything’s ok, that he’s so brave & that we love him.
There is a reason that it took so much longer: the first incision into Dylan’s neck wouldn’t accommodate the tube that needed to be inserted into the vein near his heart, so a second incision had to be made.

The reality is that one of the countless problems in this world of cancer is that you have zero control over anything, but the moment someone gives you something real (like a one hour timescale) you hold onto it like your life depends on it.
An hour can be measured, it has substance, it is held together by a definite number of minutes. An hour is a solid within a world where there is nothing of substance to measure or hold onto. So when that thing (the hour) starts to slip away, your focus is disturbed & your mind starts to scrabble about looking for something else to fixate on. Unfortunately the only other thing that comes into acute focus is your cancer riddled 7 year old boy who is lying on an operating table in another part of this gargantuan hospital which has fast become your second home…not through choice.
With every single procedure I have to remain composed & mindful. I have to remember to actually breathe & to engage subtle stress management techniques. I have to tell my child who doesn’t want to be there at all that there’s nothing for him to worry about & that it’s all going to be ok…but nothing is ok; it’s just shit & I have no clue if anything will ever be close to even representing ok ever again & absolutely nobody can tell me that either. It is procedure, we have no choice.

Twenty five times & the rest is yet to come.

Each time Dylan is in recovery so are we.
It is beyond exhausting every time, but we do it because we have no choice.
His strength is ours & our strength is his.

Even though Dylan knows that it will be painful to have his skin pierced at least once a week for blood draws & the skin on his chest pierced with the port needle for chemotherapy every month for the next three years, he told me that he was so excited to have his Hickman line replaced as it would make him “normal like everyone else “; my heart breaks.

It’s bleak. The choice is this simple: follow these procedures & hope for life, don’t follow them & it’s over.

Childhood cancer is a choiceless continuous loop of love, hope & pain for everyone every single day.

3 thoughts on “C is for…Choice

  1. You write so beautifully, it’s awful that it has to be about what a gruelling time you are all having. You are so brave and yet still have the time and energy to give honest and brilliant advice to your silly friend over the road. I love you and think you’re an amazing Mum to a very special and precious little boy, keep fighting Dylan 👊

    Liked by 1 person

  2. Again, intimately powerful writing, and thereby reading. It has a blend of immediate and contemplative too – you write so movingly of being in the ward with him, and then move to think aloud about what the experience says for you. It’s such an affecting portrait you paint – the physical scars he shouldn’t have to bear, the awful possibilities that neither he nor you should have to confront, the way you create small ‘normals’ for him (remembering your last post)…small gifts for when he’s come round from his procedure.

    “His strength is ours & our strength is his”…does that mean his strength is your unwavering love, your always-thereness that he draws on and needs just as much as that Hickman line; while yours is him, your prize that you’re strong for, his future as a boy, youth, adult? It occurs to me that maybe that strength of yours that you give him is another kind of Hickman line….an invisible one that leaves no scars on him, and has no side-effects, but is just as sustaining and just as critical to his recovery. If so, it’s a bottomless wellspring – it’ll never run dry, that much is plain from your writing.

    In a book I’m reading, the author describes her central character’s love for her young son in words that startled and then deeply moved me: “a wound that would never heal, and which she would never regret: because of him her heart would always be exposed to wind and weather”. It’s written without rancour or resentment, just with a sort of unflinching love. And it made a deep impression on me. I think your heart’s been exposed to more wind and weather than most, but what comes out of your blog so far has been love and strength. Thanks again for sharing, Siobhan. MFH

    Liked by 1 person

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