Sunday, 23 January 2011

People's reactions to my reaction

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!


  1. I think you're dealing with it just fine. I don't think there's any right or wrong way to go through something like this, but it doesn't stop people from having opinions, does it? As long as you're doing what's best for you and your family, that's all that matters.

    Hugs from Canada.

  2. Do whatever works for you.....

  3. I agree with above.. What ever is right for you and the family is the righ way! there isnt a wrong way. We all deal & cope with things differently.

    some see "keeping going" as denial, while in many cases, there is no other option. Do people really expect you to down tools completely? Your husband I'm sure wants to see you LIVE.

  4. A friends 14 yr old son was dying from leaukemia~his parents were struggling to come to terms with it. I asked the lad what HE felt about it, he replied ' I don't have to deal with it~ I only have to die, but I want to LIVE till then'.I helped him make a 'memory' box for his parents & he gave me letters for the people he wanted to say goodbye to, then he got on with 'living till I die'. when he saw glum faces he would say 'what are you sad about ~ i'm the one whose got to die & i'm not sad'.He refused to ignore the fact he was dying but insisted on living. An hour before he passed he was playing a riotous board game with family & friends~ we knew he was in a lot of pain but he was dtermined to 'live till he died'~eventually he admitted he was tired, so the game was halted & we all sat around him chatting & laughing,he gently left us~ surrounded by life ~ just as he wanted.
    I think Kevin is doing much the same thing ~ with your help. What others think doesn't matter~ they are not in your shoes ~ but family & REAL friends should accept that how you & Kevin are coping is the right way for you. I learned one of the true lessons of life & death from a 14yr old who had more wisdom than most of the adults I have ever met.
    May you & Kevin take love & comfort from each other & cherish the time you have together. xxxx

  5. Honestly? I have no idea. How would I react in your situation? I don't know. But I hope that it would be in a similar way.
    I agree with what other people have said; you are living your life, and I dont think there is a manual to tell you what you 'should' or 'shouldn't' do. You simply get on with it as best you can, and to me it sounds as though that is what's working for both you and Kevin.

  6. What an interesting question.
    Is there really a right answer to this? It seems to me that what's right for one person seems totally wrong for another.
    So why I suppose would anyone expecting a standard approach?
    The “Coping mechanisms” we all use in different situations are so variable, I walk around talking to myself and apparently now grind my teeth loudly, (some would say that’s not coping :-) I beg to differ!) each of these are ways of physically dealing with questions and finding answers and solutions, are they unusual coping mechanisms? Apparently not. But they work for me… So I suppose the point is what you are doing must be right for You, Kevin and Dennis, otherwise, you wouldn’t be doing it…

  7. Thanks for all these comforting comments. What an amazing 14yo boy, and i guess that is the point, we live until we die..

    Its just what i needed to read tonight, as it has not been a good day. I feel comforted that there is no right or wrong way to deal with this, so in my dad's words, "i'll just keep on, keeping on!"

    Thanks to you all!

  8. Hi Caroline
    There is only one way to cope with this, and that is your way. I can tell you that is absolutely the correct way. You are amazing, and you have accepted you need the help of your true friends. We are always here for you 24/7 . Loads of love
    “ The Driver”

  9. I actually think you're having a very healthy response to everything. Ignore the nay-sayers as best you can. Love & hugs.