I find it hard to believe it is September already. This school summer holiday has gone so very quickly and in just three days Vega will start school officially. Having not scrolled down my own blog for a while, I was surprised to see that my end of treatment ticker is down to 8 months. Maintenance, with all its monotony, is moving on quickly. It has actually almost been a year since Vega started- sometime last October- and now she is about to commence cycle 5 of 8. I have begun counting down in my head again, I can’t help it… (4 lumbar punctures, 11 weeks of steroids, 11 Vincristines…)
This summer has been very different from last summer. We spent most of the last summer in hospital, when Vega was the poorly-est and I was the lowest.
This summer we remain hospital admission free. In fact we have just returned from our holiday. We spent a week at the Malcom Sargent House in Scotland. The house is run and funded through Clic Sargent, a children’s cancer charity, who have supported us a few times in the past.
I wasn’t sure what to expect at all, and I actually worried that it would feel a bit like going to hospital. The fact that we would be surrounded by families with ill children, maybe having to talk about cancer, the treatment…
But the reality was as far from a hospital as we could imagine ever to get. We did meet 9 other families who are currently or have been affected by childhood cancers in the past. We spoke, talking about what “you are in for”. The cancers were varied, from Neuroblastomas to Retinoblastomas and Leukaemia, and so were the stages that people were at. In treatment and in remission. Children of all ages, babies to teenagers. Maybe it is part of the human condition to compare, and so at first Ray and I would be thankful for not having “that one” or this, but also witness that Vega seemed to cope much worse with something than another child with the same treatment.
As the week went on though this stopped completely. Getting to know people, I came to realize that having a child with cancer is a catastrophe. It throws a family completely off course, and however well or not each child deals with the treatment, however bad the side effects and even however likely the chances of survival are, all these make no difference. The sense of loss is overwhelming. The fear is paralyzing. The worry is mind numbing. The anger is eating ones insides. At the moment of the emotion, it could not be worse. It is what it is. Complete and utter devastation. It is as much as you as a family are able to cope with. And this is how it goes on. Each success, each fail, is as much as you can take. Without realizing your boundaries are pushed further, yet in your head you remain in the same place, the edge. There is not really another way to deal with this I guess. You can’t just go and hide in a cave.
I found a lot of comfort in seeing other families in the same situation and dealing with it, as we do. And we did actually speak very little about the cancers or treatments of our children. It was a silent understanding, no questions asked, no need to explain, like I have to when I tell someone for the first time that my child is receiving treatment for Leukaemia. A child on steroids gets a bit rowdy over lunch, no one bats an eye. Feeding tubes, wheelchairs, bald heads… everyone is used to seeing these. The healthy siblings too, are so accustomed to seeing different presentations of childhood illness, there is no staring, talking. On the contrary, they all hit it off together very quickly, maybe feeling connected somewhat through their own little hardships.
We had a wonderful week and I feel so very fortunate to be able to access this kind of respite break. We spent time on the beach, enjoying each others company, playing, not having to do anything really.
As I once wrote in this blog post, there are no weekends from cancer, and neither are there holidays. But we have grown to live with it, as best we can in this moment. And it felt ok, on this little holiday. I think of it as our cancer holiday, away from anyone who does NOT have cancer.