The unexpected journey.

[Havemercy]

I've never written a Blog before so please bear with me in my first effort. I have decided to blog about my CLL journey so far - right from the beginning and try to revisit some of the thoughts and feelings I had on the way, in the hope that it will help anyone who is newly diagnosed.

It was December 2010 when, after a routine blood test in connection with my high blood pressure, I looked at my blood results on our database at work. I work in the health service and, although we are not meant to, most drs and nurses will look at their own results. I can recall the amazement and shock when I saw my white cell count was over 50,and there were comments about lymphocytes being visible. No-one had contacted me about this, so I was forced to ring the GP and say "er, please can you look at my bloods I think something is amiss." He got in touch with the haematologist and I was requested to come to the surgery for an examination of lymph nodes/spleen etc. All were clear thankfully at that stage but the GP said its looking like CLL.

I well remember the subsequent fear and turmoil - waking up at night with heart racing - unable to concentrate - feeling spaced out. This must have been very hard on my husband, but he was very calm and matter of fact. I still had to go to work, and I can't remember much about how I coped. I do have some wonderful colleagues though. Then we had to leave our house for a week as our kitchen was being completely revamped. We went to the Lake District in very heavy snow - again I can't remember very much about it - its all very blurry and numb. Back home, I could not think how I could cope with the new knowledge about my blood cancer.

Eventually, after a couple of weeks of not sleeping I joined a forum for people wth this condition and there I was able to see that there were plenty of people living with CLL, even for a number of years and I stopped thinking about dying or planning my demise. I still found that I resented elderly people who were healthy and strong - this only lasted a short time thankfully!

Now, two years down the line I am fairly accepting and have come to terms with CLL. This is mainly down the support from the forum I belong to, and probably because I am still able to work and also volunteer for Citizens Advice - so am luckly that my health is holding out so far. However, there is one event which I absolutely hate and despise and that is the haemotology consultution - due next week. I will write about this in subsequent blogs but it really is a big "hate" for several of us I think.

I realise this blog is far too long but just wanted to talk about the journey so far.

[sparkler]

This brings back memories for me Caroline - especially the feelings of turmoil and then being numb and of course the fear of the next consultation.

It was the online forum which helped me to cope too - meeting with others who had lived with CLL for many years. Also sharing fears and information with other newly diagnosed patients.

You think your blog is too long.... I don't think so!

I'm looking forward to your next.....

Love

sparkler x

[Myrddin]

The appointments are never nice - no easy way to prepare for them - but if you don't have a sympathetic consultant then you can ask to be referred elsewhere. I made the change and it was all for the better. Similar distance to the hospital. Blood tests followed by the appointment when results are back. Even get a coffee while waiting. The message good or bad will be the same but the way it is conveyed does make a big difference. My story is very similar - cll being diagnosed after 4 month after many tests because first abnormal test in february might have been raised due to flu/cold. Fortunately only needed blood tests as my score was 5/5 so no further tests needed. Two years on it is slowly getting easier to accept but you can never forget if you are tired all the time. I have found mindfulness of some help

Mark Williams

“Being mindful means that we suspend judgment for a time, set aside our immediate goals for the future, and take in the present moment as it is rather than as we would like it to be.”

Also look forward to hearing your next post.

[Newdawn Administrator]

Thanks Havemercy, your insightful and honest blog helped me to write my (even longer) blog!

I can identify with so much of what you write and like you my consultation is due soon. I have the blood tests next week and feel like it's a test I have to pass! My consultant seems to like them done every 3 months which is conscientious but stressful for me. Having said that, this is only my second post diagnosis so hopefully he's only trying to establish a pattern at this stage.

I experienced many of your fears and thoughts and my husband is quite calm and matter of fact too which helps me enormously (he does his suffering in secret I reckon).

I hope we both have excellent results for Christmas but regardless, I reckon we both have much to celebrate and will be enjoying it anyway!

Much love,

Newdawn x (aka Jue)