Not So Strong After All

The days are flying by and I find that most days I don't feel great. While I am waiting for the steroids to work on the AIHA I am in a kind of watch and wait. My consultant calls it 'borrowed time'. Borrowed Time as in 'when treatment/chemo starts again you are going to be very unwell'. And even though I don't feel great, I know this is a time to be thankful for.

So what would you do with your 'borrowed time?' I had a list of interesting things to do and places to go, but I find myself just wanting to be 'normal'. To do normal things like shopping or reading a good book or admiring the snowdrops and primroses (yes, they've been flowering since December) in my garden. Meeting friends for lunch. A bit of cooking, a bit of housework (even ironing - yuk).....things we take for granted when we feel well. Last week I found myself unable to go any further while I was in shopping. So I sat for 30 minutes on a sofa display while I recharged myself enough to get the energy to get back to the car. I found myself pondering the big questions

How much longer will I live?

How will I die?

Will I die well?

Where will I go?

A friend has found a new word for dying. It's being 'promoted'. I like it, maybe I will be promoted to an 'angel in training'. I found myself lost in thought and afterwards remembered my mother just before she was promoted. She used to look into the distance, lost in thought. Was she doing the same I wonder?

Today is the First Day of the Rest of Your Life

This is a title to meditate on......

At the hospital yesterday I had some good news. It seems that the steroids may be working as the white blood count has gone down to 115,000 and my HBG is up to 12. Hooray. The steroid dose (Prednisolone) has been going down by 5mg a day from an initial start of 50mg and this week the dose is 10mg a day. Doesn't sound a lot but I guess this is what a drug addict feels when they aren't getting their full dose. I shake most of the time and don't feel at all well, but my doc says this is all to do with the steroids, so I am reassured that it is not all CLL. Next week the dose will change again and my doc says to be ready to start treatment at the drop of a hat. He thinks we will manage to keep my husband's angiogram date on 9th February and probably start after that, all being well.

Feeling Low Today

Today I feel really ill. This is the worst I have felt in 9.5 years of CLL. I shake, I feel really weak and have no energy. Just sitting is an effort. For the first time I can't wait for my hospital appointment on Monday. My husband was diagnosed as possible angina yesterday and maybe the stress of the day/diagnosis has made things worse. Spes fovet et fore cras semper ait melius (forgive if spelling is wrong) But I believe it means 'hope ever surges on and says that tomorrow will be better'.

blogging

I don't know if anyone reads my blog. I'm not sure how to launch it into cyberspace or if it does this automatically. Maybe if anyone finds it they would let me know. I have tried to understand the workings of it all, but chemo brain rules!!

Humming

Time is flying by and no hospital appointment until the 19th when we will discuss the AIHA/treatment question again.

The effects of the steroids are well documented by others, but I have never read anything about what I describe as a kind of 'humming' or 'hovering'. When I wake in the quiet of the morning, I find my chest is vibrating very, very gently (as if waiting for takeoff) with a kind of silent humming. It's not an unpleasant feeling at all, just something I haven't felt before. It's not like my clumsiness where I drop everything in sight because the steroids make me shake so much. This is very different. And I wonder if this is a preparation for my leaving my body at a later stage? Is it my energy/ soul/ light/my essence? Now I don't find this scary because as I have blogged before, I believe I will go on in another life/world/whatever when I die, but it is very comforting for me to think this. I wonder if it will stop if/when the steroids stop? I will let you know.....

Our CLL Friends (Part 2)

We continued to see my friend but now our paths had changed. She knew I was finding it hard and asked me what she could do and what was the matter? but I couldn't tell her that everytime I saw her I was overwhelmed with grief that I couldn't deal with or talk about with her. I knew that as I got sicker she would be the one to relive her husband's illness and I didn't want that for her. She needed to move on with her new life and make fresh friends. She was a special friend and a good friend. So we withdrew from the friendship.

I miss her, but I have had some counselling and was advised this was the best thing for us all and I know it was the right thing to do for us both. In the beginning when we first start our CLL journey, we look for others to support and to support us and it works very well. But as time goes by, and many CLLers I have been privileged to know have died, I find myself in a place by myself. No one talks about this kind of thing. There are no magazine articles on how to cope in such an emotional minefield. No-one addresses this on websites. There is no real answer either, no right or wrong way to behave. But you may disagree with me and that's OK too.

Our CLL Friends (Part 1)

When I was first diagnosed I found a CLL site on the net. Through the site I have corresponded with many fellow CLLers over the years, and of course, some I met personally and came very good friends with. One, who I shall call 'R' was a very good friend. Her husband had CLL and we often went out together and enjoyed each others company. A few years went by and 'J' (her husband) developed AIHA and Bronchiectasis and became sicker and we both had more chemo. We attended the same hospital and would visit each other as in-patients. One day while I was in the chemotherapy ward "J" was admitted, he was very ill. He was wheeled in in a red wheelchair and looked for all the world like my mother just before she died of CLL. I was already finding it hard when 'J" coughed, which echoed the same cough my mother had and after that day although we kept meeting and sharing, it was hard. When 'J' died I was heart broken. Not only was my friend gone but I was also reliving my mother's death. 'R' of course knew we would be there for her. She promised me she'd help my husband when my time came. This was no comfort to me because I didn't want to talk about my death but I couldn't tell her in her grief. Neither did I want to know the details of her husband last hours, but I listened. It was at 'J's funeral while my husband supported my friend, and I grieved for 'J', I also grieved for my mother and I grieved for myself and my family and inside I 'broke'.

Beauty

(Today I have posted a photo of me and Beauty in our younger days(we're somewhere on the right column) with my sister, just so you get the idea of what I write next). Here on the left is a picture of Beauty today.


What is Beauty? Beauty is 61 years old. Is he a he or a she? I don't know. He's my teddy, given the name Beauty and lived with me almost all of my life. He's about 10 inches tall and in my mind's eye I see him with shiny fur and bright glass eyes. Beauty was mine - not something I had to share with my sister and neither was he a hand me down. Like me he grew older. His fur not so furry and somewhere he lost an eye - but Beauty was still beautiful and much loved.

Such a cherished bear so why did I do it? No, I didn't send him to a charity shop. I gave him to my granddaughters - my much loved bear. I thought they'd love Beauty like I did, but one day on a visit, I found Beauty in the garden, most of his fur missing - almost bald even and worse of all, he'd lost his voice. He was wet and the stuffing had been knocked out of him and he was almost dead.

I was SO angry and upset, but I said nothing. I picked Beauty up and bought him home where he belonged. I dried him out and put him back in the bedroom. And although his growl has gone and he looks older than me now, he managed to convey that, like me, he has indeed seen life!

Thoughts on Life after Death

That's a BIG title with much to say. I was bought up with Sunday School/choir and education in a Church of England School. As teenagers if we wanted to go to the church youth clubs we had to attend church, and so we did. We went to the different churches in turn, including Methodist and the Salvation Army, Catholic too. I loved it all, but have to admit that I feel much is missing in the modern church. I hope I don't upset anyone by saying that, but it is just my opinion. My God is the God of the Universe/World, the same God for all religions and is with us all whatever we believe. The last time I went to church was some years ago at Christmas with my family and grandchildren. Mary did not figure in the Christmas story apart from a passing remark, Joseph rode to Bethlehem on a pushbike with a knapsack of disposable nappies and a plastic babybath. Children ran riot over the altar and there seemed to be no respect from parents and children alike. I don't believe you can try to bring the Christmas story up to date.



My father believed in life after death and always said his mother came to see him after he had died (passed or whatever word you would like to use). He said he would do the same and he did. I had several experiences while he was by my bedside in the middle of the night. His scent was so strong and I just knew he was there. I was 26. For the nights that he came, he also visited by daughter who was 6 at the time. She asked me to ask Grampy to stop tickling her feet in the night as he woke her up :-) And so I firmly believe in some kind of afterlife. Maybe I will blog about my belief later.

Time to do What Exactly?

2009 and its a new year, a new day and a new start if you want it. I have always like the beginning of January and the feeling of starting a new year afresh.

However, treatment is looming and yet another hospital visit on Monday. My husband is depressed, my daughter does not discuss how things are going - it is her way of dealing with everything. How can I mobilise myself for a fourth lot of treatment? WILL I mobilise myself and why will I do it? I have been told to expect hospitalisations and with all the trips back and forth to hospital and the time spent waiting I can tell my husband is at breaking point. He is very depressed. He will not talk to anyone about it, although we have great 'emotional wellbeing type help' which he will not take advantage of. I can't do this without his support. Maybe its time to let nature take its course and take advantage of quality of life instead of quantity?

Such decisions are only mine to make but I feel a burden to my family.... I feel so repsonsible for their unhappiness with the situation. My emotional help has told me that 'to FEEL responsible is not to BE responsible' which helps. No one talks about the 'death' word, just on and on about positivity and 'you have done it before, you can beat it again', but it would be much more helpful if we could get the spectre out of the closet, have a good look and maybe a discussion, and then put it back.

I am glad I have started to blog. It is good to feel anonymous and just send my thoughts into the ether. I just hope that anyone reading will understand that I am using this as a stress release and I hope that it is not upsetting anyone.