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My journey so far

Posted by
29 Jul 2015

Well I've never been anyone to express themselves publicly unless I'd had a few drinks and was out with friends.  So this blog writing doesn't come easy.  I'm hoping that in time this may change because I'm feeling a great need to put pen to paper to hopefully support others and also measure my journey later on. 

I was diagnosed with CLL on Christmas Eve 2014.  It was a strange christmas- I was previously unknown to make a fuss at Christmas time but came out of the hospital straight to the shop to buy Christmas decorations for the house.  All my four girls were very suprised  to find a festive home on Christmas Day but I wasn't really sure at that time if this was my last Christmas!  (It was at least another month until they were told)

I hadn't really listened to a word that the consultant said past the word 'leukaemia' strange how the world suddenly went into slow motion and I just sat there nodding my head and smiling at everything he had to say.  He was lovely, gave me a number of phone numbers to use over christmas if i was worried or needed to talk.  I wandered out a little she'll shocked but holding it all together. 

My phone rang - my husband (who I refused to allow to come with me) asking how I'd gone on.  I'm not sure what he got from the conversation apart from a lot of sobbing and the word leukaemia.  Holding it together was pretty difficult initially but I got there.   I couldnt understand how or why id got this curse, i dont fit into the 'most frequent in' groups in anyway I'm Black, under 50 and female?? I think it took a lot of negative thoughts and another trip to the consultant to really enable me to face things. 

But 7 months on from diagnosis I can say the word 'cancer' or leukemia  and relate it to myself without anxiety or the risk of tears.  Don't get me wrong I have my days of soul searching when I look at my family and wish for a long future, but I've accepted it as part of me.  I've accepted that the Doctors change the subject when I ask about 'cures' and I now feel it's part of me and who I am. 

The side affects tiredness, swollen neck glands and joint pain are currently manageable so I'm always reminded it's there but they're manageable and my bloods are stable.  My lifestyle has changed somewhat in the last 7 months but that's fine as I'm too tired to rave now  i've swapped my dancing shoes for warm coconut milk with turmeric. I also made a conscious decision that immediate family and close friends only were to know as and when. 

So there are only a small handful of people that know - this way I enjoy socialising and it doesn't become a night where I constantly discussing  how I am.  I know that's not for everyone but each to their own.  I've also found the delivery of my disclosure needs some work - I'm not very good at softening the content and most times end up supporting the person I've told but in some ways that's a good sign as it shows they care.

On the whole life has generally carried on as normal with some minor adjustments - so for me with CLL there is life after  diagnosis which I am very thankful for. I hope that this doesn't sound like a whine fest I just hoped that my thoughts may help someone else to see that those first few dark months while you getting your head around your diagnosis will pass and life can carry on - differently sometimes but still carry on x




Thanks so much for getting in touch and being so open and honest about everything that's happening? I hope that you've found getting your feelings out in the open a beneficial process? It certainly helped me when I was going through my own treatment for CML and will undoubtedly be of benefit to others who have recently been diagnosed or are about to undergo treatment.

The diagnosis and the immediate time after diagnosis is a very difficult time for patients with so much to get your head round both physically and emotionally. In all honesty, there is no right or wrong way to deal with things but it sounds like you've adjusted to living with the CLL.

I completely understand your desire not to tell everyone straight away. I was very much the same at first and didn't want people to make a fuss of me. I think this is quite a common reaction amongst patients who don't want to be treated differently or appear a burden to others.

The important thing is that you know that you deal with things in a way that works for you and that you know that help and support is out there if you need it. We're behind you every step of the way and Macmillan have a help line run by professionals who are excellent if you ever need to talk to someone.

Here's a link to their support section with more information:

Thanks again for getting in touch and all the best going forwards with all your treatment. 

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