(Quiet early mornings in our local park before anyone else gets there..)
How Can I Help?
Your child getting a cancer diagnosis is one of the most frightening journeys a parent can go on. Alongside this, it is a constant juggling act of school pick-ups and who is going to be in hospital, whilst trying to shoe-horn the basics of life in to keep a family running. We have really leant on some of our family and friends (particularly local ones) which has been invaluable. I have now heard a few people say: I really wanted to help, but I didn’t know how. So I have had a think and come up with a few ideas, that may be of use to someone.
What Can I Say?
When witnessing something as shocking and overwhelming as childhood cancer, some people clam up. Friends who have been part of your life for years, become strangely absent. It probably comes from a good place, but “I didn’t want to bother them” translates into hollow silence.
If you have a friend going through difficult times, acknowledge their situation and just be in touch. Even if you don’t know what to say; something fumbled but heartfelt is better than nothing at all. I find you can’t go far wrong with “I’m so sorry this is happening”.
In the whirlwind chaos of the first month, I most appreciated messages that didn’t require a reply. I fancy we should return to the slower-paced 1990s and send letters in the post. Unlike a text message, no-one expects a reply to their card. But if you haven’t got time for being a lady of letters, a “thinking of you today” message will do just fine.
The fact of life is that we all need to eat and somehow nourish the picky children. A leukaemia diagnosis begins with a few weeks in hospital, and then shifts to intermittent periods of hospitalisation, whilst also being treated at home. Achieving the shopping, chopping, cooking and clearing up afterwards, under these circumstances, can be exhausting and stressful.
Offering food is a simple way of removing an everyday problem.
Parents don’t get fed in hospital, only the patient. So at times I find myself living off Joshua’s rejected toast at breakfast and a few leftover chips at tea-time. Or just not eating at all.
Except for when we were living on the ward for the first few weeks; one friend kept emptying out meals she had made, from her freezer. Chipping bits off her defrosting Thai curry kept me going for a few nights. Another Wonder Woman brought in boiling hot fresh-from-the-oven lasagnes to our room. I will never forget this.
As the weeks turned to months, friends left meals on our doorstep. One lass didn’t tell me that she’d done that and I nearly stuck my foot in her glass bowl of chilli when I went out.
It’s a very long day with not much to do in an isolated hospital room; especially as the sleep from the previous night is likely to have been disturbed. When you have a poorly young child, even having a shower is tricky, because you can’t leave them alone. If it is possible, ask: “can I come and sit with you in hospital?”
They will be very glad to see a friendly face, equipped with an activity book that can break up the relentless televisual entertainment.
[*Clearly this isn’t feasible under current Covid-conditions, but when that has hopefully changed next year…*]
My friend (who worked in the same hospital) would always bring me a coffee before her shift started. Which was a very welcome start to a tiring day. One Friday evening, Ben’s mate brought him a curry and a surreptitious beer. They ate together and he kept Ben company. When you would have been sat alone in the dark with only the gloom of the TV for company, these gestures mean so much.
Families in this predicament often have other children; I can’t even count the amount of times Louis has been picked up from school by other parents and occupied at their house, whilst we were delayed in hospital. So, plugging the gaps of childcare for other siblings is a significant part of assistance.
The Long Haul Ahead
In the first few weeks of treatment, I could have employed a PA to cope with the volume of enquiries and found it stressful to keep up with the demand for answers. At times, I felt like lobbing my continually-beeping phone out of the window. (Helpfully, the windows don’t open on the oncology ward). There were moments where I couldn’t even face updating my mother on the latest rapidly-changing developments.
This is where little messages of support (which didn’t need me to respond) were most appreciated.
But then, as the months roll by.. everyone quietly moves on. The friends and family drop away; you really don’t have the energy for reaching out, and it becomes a long, lonely road.
All the usual things from life with a young family, have been stripped away. Often one parent has given up work to care for their child, or (as in my case) the loose career choices they were making now their child was meant to be getting less dependent, have had to be shelved.
There are no activities. All the fun things I did with Louis – gardening group (relentlessly watering plants and looking for elusive newts) soft play, gym club, endless sunny afternoons in the park packed with carefree children. All that has gone.
It’s a very quiet existence.
Our situation is not as acute as it was, but there is still chemotherapy rumbling along, visits from nurses, the threat of getting ill and requiring hospital… The stress and worry is still there, like the low hum of an engine; never silenced. We need our community now, just as much as we have ever done.