30 YEARS OF LOVE

July 31st 1980 - Mandy was away staying with my Mum for a week. I had started a new job that week and on the very first day I knew I had made a mistake and should a) never have left my old job and b) started the new. I was feeling down, so July 31st I popped into my old work premises in the evening. I was lucky in that I hadn't given in my security pass yet and was still able to use the social club (which, believe it or not, I had never used before as with a 12 year old to look after I was always at home in the evenings). Well, there was Neil sitting in the bar. I already knew him a little of course and so we got chatting. He invited me to go for a meal (little did I know then that he had just had some fish and chips and wasn't really hungry!). I knew he had a motorbike and so I suggested he drive my VW Beetle and we drove off to a Greek restaurant in Southampton. We had a great evening and on the way home he suggested we stop off so he could show me the house he had just bought and have coffee. He then suggested I could stay over while he slept on the settee!!! I declined. Knowing him now, I laugh - he never had any ulterior motives - not his style. So I drove myself home and was very pleased to note he'd left his motorbike gloves in my car and so I knew he would contact me again. He did and the rest is history. We married 15th February 1986 and so far have chalked up 30 years since that first evening. 30 years of being loved by Neil - how lucky am I? Today we are going to go out to lunch to celebrate.

COMING OUT

I am thinking of coming out of the closet and posting my blog on some CLL websites. Just thinking of it at the moment as this is still my private place. What do YOU think?

SISTERS, STEP SISTERS, HALF SISTERS, SISTERS IN LAW - THE SISTERHOOD

How lucky am I to have so many sisters (and a brother of course) but this post is about sisters. Altogether I count 6 of them. Now one speaks sometimes about her 'blood family' (son and grandchild) and from this I believe she doesn't feel as loved by me as my 'real' sisters. What codswallop! This sister, my eldest sister Edith, is a sister - no 'step' word, no 'half' sister, she is MY sister. So we have different mothers - we are still sisters. She was there for me from the time I was born. Always looked out for me and loved me more than my mother. That is a fact and she is so very loved. Yesterday I told her I had a need to see her soon. Since she moved away I have missed her. And another sister, Diana. Closer in age and another much loved sister. Who else is holding the fort looking after 6 guinea-pigs, 2 cats (complete with litter trays) and a tank of fish. Couple this with travelling through England and Wales to do look after this menagerie together with my daughter's home while my daugher is away with her family - who is she doing it for? Me, her sister of course! So that my daughter can have a holiday to relieve some of the stress she is under and before she comes home to take up her new job. And I hold a key to this sister's home so we can use it for a break, even while she is away. Diana, you are much loved - but you know that.
Sally now - another sister (no 'in-law' title here although she is married to my brother). She is my sister too and has been for over 40 years. Someone to laugh with, share with, shop with (more handbags Sally??) and then we have Geraldine, Dawn and Caralyn, Neil's sisters and mine too. Always there. Geraldine who told me on my wedding day how glad she was that I was marrying her brother. So we are all sisters and all much loved. I hope that I am half the sisters that they are to me

POST SPLENECTOMY

My splenectomy went well. It was a clean, textbook, keyhole procedure and I was home in 2 days. The very worst thing about it was the after effects of the drugs of which I may blog later. It is so good to be home enjoying the small things, like cups of tea at 4am and chats with Shreddy (my cat) in the small hours.

I saw my consultant on Monday. The GREAT news is that the hemolysing appears to have stopped and it seems that it was the right decision to remove my spleen. My blood counts are also looking much better. We know with CLL and AIHA that things can turn on a sixpence but for now I am content and feeling peaceful.

SPLENECTOMY DAY TOMORROW

Tomorrow is the day for my splenectomy. We thought it would be a few more weeks, but we got called back from Wales where we were with family (hi Sums, Lyd, Mandy and Martin and Diana of course). The pre-op went well and was very well managed. It was decided that an echocardiogram was needed because of my chest flutters/explosions/purring/vibrations etc. This was done early this morning and since I've heard nothing different, I will report to the ward tomorrow at 7.30am. I admit I am scared....I am also afraid of the dark as well.....but I will be ok. You can't kill a bad thing as my friends know, because I'm still here! Nearly 11 years of leukaemia now.

I know I don't have a public following - mainly because I don't know how to launch my blog into cyberspace, but anyone happening on this, please send me out some good, healing thoughts, prayers etc. Thanks.

MEMORY BOOKS/BOXES AND THE 'D' WORD

I saw Karen this week and it was so helpful. I can put trying to be positive aside when I am with her and this time she asked me if I was aware of the implications of the splenectomy and the 50/50 odds. Of course, I am very aware and it was such a relief to talk about it and my worries that I might not be able to have the operation or that my heart is giving so much gyp that things might not turn out so well. And what of after? I still don't want to go there.

We discussed that I was worried about the effect my dying will have on Summer and Lydia. I know I am a much loved Grandma. I want them to remember me as Grandma and not as an 'illness'. The same for Mandy. I want her to remember me as the mum who has always loved her so much even if she didn't always know it. Karen suggested memory books or boxes and at the time I didn't think it was a good idea. But since I got home I have been thinking and planning and sorting. I already have a box of stuff put aside for Mandy and now I am sorting photos (maybe this is the source of the happy memories!). For Mandy my plan is a book about her and me, mother and daughter and who I really am. I plan to use photos and write little things down that I remember. I hope I will have plenty of time to finish it. For Summer and Lydia I want to do memories of times spent together and a little of what I was like when I was their age. It is a big task. There are photos everywhere and many ideas in my head.

REFLECTIONS ON COMING TOWARDS THE OTHER END OF LIFE

It's always been said that when I person is dying, their life flashes before their eyes. While I am not actually dying at the moment (I hope) my brain is engaged in a similar thing. My mind is constantly replaying episodes of my life - like a journal or a cine film. One minute I am at my daughter's wedding and the next I see my mother give me some gold earrings and when I ask why because it's not my birthday, she tells me it's because she loves me. It's really the only time I ever heard her tell me she loved me! There is something wonderful going on here. So many episodes of half forgotten things and great big things and things inbetween. For some reason the old bad parts aren't there, just the funny, happy times. They replay at night when I can't sleep (and this is often)and during the day - even when I'm cleaning my teeth. When mum was close to dying from CLL and we were on holiday together, I often caught her staring into space and now I wonder whether the same was happening to her. I do hope so.

AIHA AND SPLENECTOMY

Another few months have passed and I am so tired. We managed to get to Wales to see the family in May and it was really lovely. Family really is everything and those granddaughters of mine really know how to make me laugh. I hope they know how much they are loved....my daughter too.

I knew the AIHA was back while I was in Wales. The stairs were difficult, breathless while walking and of course, the old chest vibrations and palpatations. Couple this with feeling really unwell and you have AIHA. My consultant felt my blood counts were ok and had given me another 8 weeks before I needed to see him again. After just 3 weeks and feeling so ill, I had to give in and pay another visit This time the reticulocytes were upto about 174 and hemolysing was going at a rate of knots. Dr Roy was very concerned and it seems now the only way forward is a splenectomy. He explained that there is a 50/50 chance that it will help. 50/50 - half empty or half full? I haven't asked what will be next if it doesn't work, I don't want to know at the moment....one thing to handle at a time. He said to be prepared that spleen could be full of CLL. Once we have the hemolysing under control we will have to tackle the CLL. Meanwhile I am back on high dose steroids with all the side effects, yuk! Things are moving fast and I have another appointment next Monday with Dr Roy and an appointment with Mr John, the spleen surgeon on Tuesday to plan a way forward. I have had the pneumonia and meningitis injections ready to go as I believe they want to do this quickly. I am afraid Mr John won't do it because of cardiac problems. An ECG last week was all over the place.

I have already noticed one of my sisters seem to be pulling back and I haven't heard from my brother in quite a while. I understand this as I feel this way too when someone is struggling with illness. We don't know what to say or how to cope. But my main worry is Neil and who will look after him and support him? Or will it be the same thing again that he has to cope with everything mostly by himself. A shoulder would be a good thing to offer.