One thing that has struck me heavily this week, is the fact that people have very fixed ideas about how you should deal with anticipatory grief, as Kubler-Ross calls it. Two people have actually, in a roundabout way asked me if i love Kevin!
Obviously i don't walk into a room looking desolate and people are surprised that i am still working and still doing all the ordinary things that i am doing. We have been on this journey since December 2004, it is not new to us. We need money, so i work, we need routine, so i keep going! Just before christmas the doctors put a timescale on things, but we have known all the way along, that unless some new miracle cure came out, this was going to kill Kevin. Part of our battle as a family has been to set things up so that we were ready for that. I swapped jobs to lecturing, partly to be more flexible, i don't want Dennis to grow up a "latch-key kid". Kevin has always encouraged me to work hard, when he was first diagnosed with cancer i nearly gave up doing my studies for my MSC, but he told me "you must carry on, you need this more than ever."
The news before christmas was a bitter blow to us, but perhaps not that unexpected, however others have found it much harder. Many people see Kevin and comment on how "well" he looks, how able he has always been, it was only in September that he walked part of the Great Wall of China for charity. One time during treatment he had very glowing skin, and a mother at school asked him "have you been skiing?" "no," he replied, "just for chemo!"
Over the years he has often complained that without any physical symptoms to show his illness it is easy to dismiss him as "well". He has recently lost his hair, suddenly one morning, it fell out, after the radiotherapy. Kevin laughed, "i was going to get it cut yesterday, just as well i didn't."
Hair loss is always a distinctive sign of "cancer", but some of the treatments have been brutal and harsh, but to those outside of this house, they don't see the sickness and diarrhea, shivering and tiredness. When we emerge from our weekend of "treatment hell", normal service resumes and everything seems fine. To the outside world we are "fine". Because of this people tend to think that this is sudden, and a shock. I feel i should be wearing a scottish widows cloak and wringing my hands, to show my sadness. However my emotions go beyond this socially adapted view of grief. I often feel angry, use inappropriate humour, practical rationality, keeping busy, etc to get through. I do cry, but rarely and that is usually on my own, in some obscure moment. I cried the other night, after we came back from dinner with some friends. We had a lovely evening, but had to cut it short, and Kevin was clearly in alot of pain. I found it hard to see him struggle, i wanted to help, but couldn't. They were tears of frustration.
I also find the "socially acceptable" conversations quite hard, mainly because they are becoming a bit rehearsed and boring. "Kevin is dying." "Oh i'm so sorry, you will be in our prayers..." This is usually followed by alot of nodding and serious face pulling, earnest expressions, looking at the floor etc. A few weeks ago i had this urge to break into song "There will be trouble ahead..." type of thing, i wanted a bit of variety on the whole thing, but it was my boss, and i knew that one needed to follow the "social norms" expected of me.
When grieving, Palastinian women are expected to wail, Jewish couples are expected to rip their clothes to show their despair. Coming from such a weak cultural standpoint, living in a very secular world, i struggle to know what to do, but i sense that others feel i should be doing things differently. I was really shocked when i good friend asked me "but you do love him don't you?" I would defy anyone to live and care for someone through treatment for 6+ years, and do it without feeling!! I did discuss this with Kevin, and he said "thats because you just get on with it", i would also add, it would be his worse nightmare for me to just stay at home with him and look after him. As he is getting more and more tired, he has said he prefers it when i don't work from home and he can have the house, the computer, the kitchen, to himself.
I am intrigued as to how people think i should "deal" with this. Please do put your suggestions on a postcard and post them below, they will be appreciated! Clearly i need guidance!