I have begun to write this post so many times these last two years. It is a somewhat controversial topic and I usually think about it on our “good” days, when things feel easy and life is good. Eventually those days are followed by days when things are not so good and I abandon the post again in favour of wallowing in self pity.
In the past two years we have been very fortunate to have the support of our families, friends and some great charities. Vega’s illness brought with it what in the onco circles is often called cancer perks. These perks have been of all sort of kinds. Our trip to Disneyland, funded by a charity, is one example. Our friends fundraising for us in the first weeks after diagnosis is another. There have been many more- having a Disabled Badge for the car, visiting the circus for free, being allowed to take off time from school (trust me this is a biggy in our primary school), our holidays in Scotland, Ray’s sister “selling” us her car (we have yet to pay Ray’s dad for it), Beccy being our childcare slave for the last two years, and in general people just being very helpful and supportive (financially and emotionally). Staying at home and being able to look after all my children, while receiving a carers allowance has been a perk I have accepted gratefully.
But some perks I find very very hard to accept. Mostly the ones that involve us getting something for free while no one else does. Very recently Vega has been offered to attend some yoga classes for free- Lyra and Alys also go and I do pay for them. Maybe it is because Vega is coming to the end of her treatment- I feel like a fraud accepting these classes for free. I know better than anyone that although the chemo will stop in three weeks, the remedial work is only just beginning. We won’t be over this for a long time. Yet I can not say “Yes, thank you very much”.
I have thought so often about why that is- me finding it so hard to accept help from others. I think part of it is pretending to be strong, being able to cope and do it myself. Maybe if I would let people see how much help I need I would acknowledge to myself how weak I really am. Maybe I would then feel weaker and eventually I would just crumple.
I also think that cancer is a really high profile illness. And I think it is easy to cash in on that. Childhood cancer is one of those terms that makes people quiver in their boots. For a regular family with more or less regular children the thought of cancer is terrifying. I am not trying to downplay it at all- it is utter utter shit- but in the last two years I have seen many of my friends struggle with health, or with their families or money. I have friends who have children or relatives that have some kind of long term health issue, some more severe some less. These people are dealing with difficulties every day, just like we do. But they do rarely get offered freebies.
I have been writing this blog for the last two years because I wanted to keep you all up to date. I wanted to demystify what it is like to have a child on treatment for Leukaemia. I think what I am trying to say is that all of us need help sometime, when times are rough. And I think because Vega is being treated for a childhood cancer people might have the impression that our times are mostly rough. And so, many people want to help. But our reality is that times are sometimes rough, and then it is very acute. But sometimes things are going pretty well and I find it hard to accept help or money or free yoga classes because I think of all the other people who need help so much more than we do. I can’t cash in on this. By saying no I am not trying to offend anyone. I am trying to be normal and live life by the rules of healthy people who don’t get freebies.
Saying all this- I like doing things for people. I like giving them something they didn’t expect to get. I like cooking and baking and helping and it makes me feel good to do it. So I get it. I get where you are all coming from. And I thank you for it, truly. Me writing this blog post now, is like a weird apology. Vega is on the mend and yet we are still getting cancer perks. It has been such a long time that I have almost forgotten about the really bad times we had. Isn’t that strange? That my mind can actually tell me that all this hasn’t been that bad? That I don’t really have any reasons to accept free yoga classes? I guess this forgetting… you might call it healing, right?