Melancholy and Anger
Sorry but if you're having a 'down' day, don't read this now but if you want to join me in misery please read on.
Since diagnosis, I've never been angry that I've got bc and my life will be very short. I get very sad, feel desolate at times and very scared but I suppose I never have the energy or time to waste on anger with myself. Yes, I get angry with my children, with my long suffering hubby and family and friends for little, on the scale of things, petty things and especially when I had FEC or was on steroids, the red mist would descend just out of the blue so everyone has had to put up with unwarranted rants from me. No-one deserves this.
I think this lack of anger has probably helped me cope with all what's happened and as I'm strong willed and determined to do as much as I can and for as long as I can has added this extra time to my life.
Yesterday, I met up with a wonderul group of women who also have secondaries with the exception of 2 women in head scarves, you'd have known we all had this disease and at this stage. Everyone was vibrant and ate well, chattered and giggled like old friends do and yet most of us had never met each other before apart from in the cyber world. It was lovely and they have given me lots of encouragement over what to do next - so thank you.
However, when I got home, I felt overcome with sadness and the reality hit me that they and me are going to die way before the average age and how much we and our families will miss out on. Such a wonderful group of people and it feels so unfair that there are so many people like this will die prematurely and the 'scum of the earth' carry on destroying things and others' lives for kicks.
When I got home and after the children went to bed, hubby and I played crib which we haven't done in years (and have probably corrupted all the rules anyway). It was so refreshing to do something 'normal' together and just have a laugh and 'pretend' it was like the old days. Why after nearly only 13 years of marriage is it going to end?
We desparately want to spend a weekend away together somewhere nice but between hubby working some saturdays, children's birthdays and bank holidays, the earliest is middle of may!!! (and we haven't even got the childcare sorted yet - oops!! ) and it's another expense - we need to spend his bonus on getting things done to the house and on things that will make life easier in the future when we all want and need to be using the internet at the same time but we both need to spend time together now whilst I'm well enough to get out and about and that is probably a better investment than any material things. As they say 'money doesn't give you happiness but doesn't half help make life easier.' That is not meant as a plea for money though - it's just a change of priorities that we hadn't banked on.
When it came to bedtime, I then felt so overcome and angry by what this disease has done to my life, my familes life (both sides) and friends, work colleagues and 'everyone else who knows me' as they say on radio dedications.
I feel angry and sad that my children have had to see me being so ill at times and now have to rush round to help me if I suddenly hit a problem like regurgitating my food. What youg child should go through that? Our family life has been transformed and not for the better. Emotional scenes and high stress levels are more like it these days and yet we all know and feel we should be making the most of our 'happy home life' and I suppose we are pressurising ourselves on that one and just should be more laid back because who knows there is always that 'bus that everyone tells you about that might come your way one day'.
It made me think about what I had dreamy my life would be. Simple things - like I want to be able to go out cycling with them, walk up hills in the countryside, jump over streams now and in the future. Not to be the one that sits in a chair waiting for them to come back.
I've enjoyed the children at all ages but I suppose now as I know I won't see them grow up, their particular ages make them seem so much more fun.
Laura - her love of wildlife. I'd love to be able to go out on longs with her and look at the wildlife with her through binoculars etc and climb hills to see views and spot birds. Her wonderful imagination and sense of humour. It breaks my heart when I see that fear in her eyes when I suddenly choke or have a pain or can't do the things other mums would be doing.
Woody - who has got me interested in football andI love sitting watching matches with him and discussing it. (Adults - sorry can't compete with your knowledge so don't even try) We share a more similar sense of humour so have lots of giggles. He's into a variety of music like me and I would have loved to have taken him to see his favourite bands but I've never dared book tickets so far ahead because I've spent the last 18 months not knowing if I would still be here by the time the concert came round. Why should he have to take responsibility and take charge if I have a sudden attack of the 'vapours' for want of a better word?
AJ - his brilliant sense of imagination and sense of humour. His innocent belief in things. It cracks me up to see him get so distressed as he is so scared I will die when he is in school or away from me. I want to be able to take him to the park and play outside games, do laserquest etc. He lacks so much confidence and I can't help him with that as my illness has added to his lack of sense of self worth. I wanted to be here for him to get him to be more self confident. Just have fun reading books with him and listening to his 'chat'
My hubby - I thought marrying a younger man would mean we would have more time together at retirement and we would be able to go back to what we used to do pre-children, once they were old enough to be left alone for the weekend or left home. We were going to walk The Penine Way, go to Scotland and Wales to walk, just spend time together, travelling in the morris minor. Having children has put a strain on our relationship but we've always got on so well together as a couple. I knew our relationship was strong enough to get us through the awkward years and that having children can mean that your own needs as a couple or individual have to be sacrificed on occassions. All those dreams shattered - not expensive or unusual needs, are they? Never to be able to celebrate our silver wedding anniversary etc. Our jppint dreams just gone.
Never to see my children grow up through the teenage years, have different types of holidays with them or general activity days, do their GSCEs, get qualifications, get jobs, travel, marry perhaps, grandparenthood seems so unfair I won't be here.
We struggled to have the twins - I had fertility treatment. I can't say I would never had had them if I knew I would be terminally ill when they are at junior school because they give so much back to me and I love their company and without them I would have probably given up on treatment earlier. As a health visitor, I saw so much child cruelty and neglect and I wonder why its me who's going to die when I love and care and can give so much to my children, family and friends and the world.
My sister - I thought we'd probably be holidaying in our retirement together just as our nan and her sister did. I can see the fear in her eyes when I give her bad news. It upsets me knowing that she lives so far away and we can't spend as much time together as we would like to and I can nver help her out.
My mum - not being to care for her instead of her caring for me. Seeing her so upset because I will die before her and how she has to cope on her own as neither myself or my sister live nearby. Seeing me have the sort of cancer problems that my dad had. Again, spending time and doing common interests together.
My uncle - who always kept me so amused as a child with his antics. Also to see me having the same sort of cancer related difficulties both his mum and brother had.
All the nephews and nieces - that over the last 3 years, I've not got to see them as frequently as I would have liked and to be able to be a 'proper aunty' and in the future, not to be an ear to listen to.
My in laws - not to be able to repay their help they've given us and spend time together.
My friends - again as the children got older I thought we'd be able to go away together or meet in the evenings without the worry of getting babysitters etc. I can never repay all the help they've given me over the last 3 years.
My career - I was halfway through my degree and I always wanted to achieve that. No promotion prospects, not even being able to work at present.
Today, I am angry and sad but I never want to be bitter or anybody else to be bitter about our situation because I learnt that lesson as a student nurse - it doesn't make you a good person to be around.
Hopefully, normal service will be resumed on this blog very soon.