Running on Empty

I am so tired.

At the start of this journey I spend every night next to Dylan in his hospital bed until he is allowed home; fifteen nights lying next to my little boy who has just been diagnosed with cancer. I do not really sleep, I have become hypersensitive.

I watch him throughout the night, wondering whether his arms will get tangled in the tubes protruding from his chest & accidentally pull them out or if when he rolls over onto his side he will stop the flow of the drugs entering his little body. Instead of sleeping, I watch him & I wonder. I wonder why & how this all is happening, where this is all going to end up & how will we get through any of it. A year on & I still wonder this now.

The rooms on the children’s oncology ward have pull down beds for parents to stay every night. We do not use the pull down bed; Dylan does not want me to leave his side & moreover I do not want to leave his.

During the night (as during the day) the nurses & medical staff come into his room to check his temperature, his blood pressure & his heart rate & to administer whatever cocktail of drugs he needs at any given time.

On top of these two hourly checks Dylan is also physically attached via his Hickman line to two intravenous drips & an IV pump that ticks constantly…all day & all night. Once the hydration or chemotherapy bags are empty the pump beeps incessantly until a nurse comes in to turn it off. If the intravenous lines stop flowing properly then the pump beeps continuously until a nurse comes in to sort it out.

If Dylan needs the toilet (which he does frequently due to diarrhoea caused by chemotherapy) or a wash, or to brush his teeth, or to go to the playroom, or to take gentle exercise, or to be anywhere other than bed, I have to unplug the pump from the wall, wrap the cable around the stand, carefully & slowly ensure that his lines are not caught on anything & then gently manoeuvre Dylan, the pump et al to the requisite destination all whilst making sure that neither of us move too fast to accommodate the equipment to which he is permanently attached.

He has to pass urine into disposable bottles so they can analyse & monitor his fluid intake & output, so pretty much every hour or so (due to the high levels of hydration being pushed through his system) I have to take each bottle to the sluice room, label it & leave it for analysis.

His room is right next to the reception desk, so on top of being able to hear all the other children’s IV pumps beeping intermittently we also have to endure the intercom buzzer which is pushed frequently as people ask to enter the ward. There are lights on constantly which despite the blinds, shine into the room emitting a low glow of hospital white light over everything.

In all honesty, how can I sleep? There is so much going on all at once, it is beyond crazy.

Overnight, this becomes our mental & physical existence.

I am in shock but am aware that I have gone straight into fight or flight mode. The high anxiety I experienced in the days leading up to Dylan’s diagnosis has now turned into deep fear. Fleeing is not an option; it is fight time.

I cannot sleep even though I desperately want to. Occasionally I doze, maybe for ten or twenty minutes at a time; the heavy fatigue of my body is parallel to the unbearable weight of my mind & I know that I have an altered chemical state coursing through my veins.

Adrenaline; it’s a phenomenon.

We leave hospital & Dylan is now classed as an outpatient. We have been issued with treatment plans & so much information that it feels as though I am drowning. As the adrenaline starts to abate my anxiety returns. I am petrified to no longer be in the safety of the hospital, I am petrified all of the time. There is so much to remember & Dylan is so unwell that the adrenaline never fully leaves. Instead it rears up each time he is sick, or has a sore bottom, or cannot eat, or starts steroids, or has a temperature, or is admitted to hospital, or has another scan, or a lumbar puncture, or chemotherapy.

There is no respite.

His hair starts to fall out & he does not want me to shave his head, so for weeks his hair is everywhere; his pillow, my pillow, our clothes, the sofa, the stairs, the kitchen. Clumps of his beautiful hair just everywhere & I just have to sweep it up. My heart & mind never stop racing…it is all just so sad & overwhelming. There is no pause button & there is nowhere to go.

It feels as though I am holding up the weight of the ceiling because if I don’t I will get crushed. Everything just hurts so much.

This heightened state continues from mid December until mid July & throughout it I am so tired that I do not even know that I am tired; adrenaline has carried me through.

Maintenance starts in mid July & I have been anticipating this moment for months. It marks the end of “intensive” treatment but the intensive thought processes I have continue. As maintenance begins I find I have more time to reflect, we are in hospital a little less & there is a bit more breathing space; fight or flight is over, now it is more like an indeterminate endurance course.

I can deal with physical fatigue, I can sit down & rest. To be honest, that is pretty much all I do; I sit with Dylan everyday. It is not so much a physical exhaustion but more a mental fatigue that grinds away everyday & will not leave me alone.

It accumulates in abundance & has so many different triggers that I never know exactly what will set it off. My mind’s desolation sits so heavily that there are times when I experience a sensation that I can only describe as being as if I were made of concrete, I feel as though I cannot move, I feel faint & I feel nauseous.

Being on a children’s oncology ward is inexpressible. Watching babies, children & teenagers suffering with cancer is overwhelming.

As time goes by you start to recognise some of the children & their families. You get used to seeing them as they progress, but every now & then having not been in for a couple of weeks you notice that some of them seem as if they have regressed. They appear unrecognisable because they have started a high dose of steroids & are all puffed up, or they have been readmitted & have started to lose their hair again or they have had surgery & their raw wounds are clear for all to see. Sometimes their appearance is so changed that I am stopped in my tracks & I have to leave the ward because I cannot hold in my anguish. I have, on occasion, had to take myself away to cry so hard with such desperate sorrow for both the children & their parents. Sometimes you never see them again.

It is nothing but heart wrenching & the emotional exhaustion is never ending.

Last week, having not been in hospital for chemotherapy since just after Christmas, Dylan had his eighteenth lumbar puncture. I know how it goes, I know how it makes him feel, I know how it makes me feel & so I prepare my mind accordingly. However, for the last few weeks, Dylan has been complaining of backache. We mention this to the consultant. He had this problem a few months ago & it was due to a deficiency in vitamin D. This time it would seem that he is not vitamin D deficient. This time the consultant tells us that after his lumbar puncture we need to take him to radiology for an X-ray of his spine. He wants to check that Dylan is not suffering from avascular necrosis (the death of bone tissue due to a lack of blood supply, potentially leading to tiny breaks in the bone & its eventual collapse); a possible side effect of steroids.

We are told that if the X-ray shows nothing then he will be scheduled for an MRI scan. This new information crashes into me with such force that for the next two days I can barely speak. I struggle to stop shaking but simultaneously I cannot stay awake; the weakness it brings is agonising.

We will have to wait & see again. It is yet another concern now planted permanently in my mind & there is absolutely nothing I can do. I have no idea how often I will have to make these immediate adjustments. It is yet another thing that contributes to an unending sense of shattering fatigue.

The sheer helplessness that childhood cancer brings is quite simply emotionally draining. The tightrope constantly requires an inordinate amount of mental energy which in turn takes its toll physically.

It is a ceaseless unforgiving cycle, which I know will continue for the rest of my life.

I cannot turn my mind off, this thing is here every single day. This state of mental fatigue is a perpetual struggle.

I am so tired; but sleep will not fix it.