Im new!

Hi to everyone I'm new. What a relief to find this online support at last as I have felt so isolated from other people who have CLL because there is nothing up here in the North East. I had been using a CLL site in America. I was diagnosed when I was 36 years old and what a shock. I had lost my mum a year earlier to Lymphoma hence why my GP was so thorough with the tests. I had originally gone with an ear infection which would not go even after having antibiotics. I have just turned 45 years old and continue to have my regular blood tests. I have no enlarged lymphs its only showing itself in my white cell count which goes up and down. My Haematologist says its just wait and see and I've definitely had to do that over the past 9 years that I've had it. Three years ago I fell pregnant and the professionals panicked a bit. But there was no need I had a healthy pregnancy and birth and have a wonderful 3 year old daughter now who keeps me and my partner on our toes. I look at her every day I think how blessed I am she is such a miracle. Following my pregnancy my white cell count dropped dramatically much to everyone's surprise I'm guessing that being pregnant had a positive effect on the CLL. During this time I have given up work as a community nurse for people with Learning Disabilities mainly because I kept getting infections eg. ear nose throat infections and was finding it extremely tiring. Any way that's me it would be great to hear from anyone who is around the same age and perhaps has similar experiences to myself.

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  • Hi Mairin,

    I have just joined this group too, and was very interested to read your post. You are very young to have a CLL diagnosis, and I'm sorry to hear that you lost your Mum to a lymphoma. But it was great to hear that you now have a lovely little daughter. I was surprised to hear that your white cell count dropped during your pregnancy. That must have been a great relief.

    I'm much older than you (64), but I also used to be a community nurse (district nursing), so we do have something in common. I was diagnosed 5 years ago, and am also in the "watch and wait" stage of illness. However, my white cell count keeps going up, never down, and it's been going up more quickly this last year. I'm trying not to worry about it at the moment, but to make the most of the time I have. I do get very tired though, and the long hill walks I used to enjoy, are much more of a struggle now. There was a time when I was getting one infection after another, but that seems to have eased off, thank God. I carry a little bottle of antibacterial hand gel round with me now, and use it a lot, especially after being on a bus, or going shopping, or places where I might touch surfaces that might have bacteria on. Not sure how effective it is, but it seemed worth a try, and I do seem to pick up less infections now.

  • Thank you for your lovely reply. Yes I was young to have a CLL diagnosis but I think because of my mum they were more thorough than they would have been otherwise. I was recently on a similiar site in the USA it is not as uncommon in young people over there as it seems to be here in this country. It seems to be that they are detecting earlier or people are getting CLL earlier.

    My wbc although for the most of the 9 years I have had it has been low it does fluctuate going up and down. This year however similiar to you it is going up slowly. Same as you I try not to let it occupy my mind too much not that I have much mind space with a 3 year old. Yes I try to be as thorough as I can with hand washing etc and now that I am not working the infections have subsided some what. I am concerned now as my daughter has started school nursery that I will catch everything that she gets but to be honest my hubby seems to catch more than I do. Strange isnt it.

    Thank you so much for your reply and I look forward to hearing from you again. Take care Mairin

  • Welcome Mairin.

    I am quite a bit older than you - so no chance of getting pregnant to help my cause, haha! It is encouraging to hear that you are still going strong for so long and that your w.b..c. is pretty stable really.

    I hope you link up with someone nearer to your home but just wanted to say Hi. Keep smiling. x

  • Thank you for your reply its just so good to have contact with others at last after 9 years of isolation really. And yes I do hope that there is someone close to home. Take care Mairin

  • Welcome - great that getting pregnant could have such a positive effect as well as being a blessing in it's own right.

    Vital that anyone who is ill is in contact with a group of people going through similar experience. The sharing of experience can be very helpful and will help you educate your doctors too in some cases.

    Though still thought of as a ailment of those retired - as more tests are done it is clearly present much earlier than previously thought. Hope it is a long time before you need treatment - may be only 5 years till new treatments are available. Hopefully we can all hold out long enough.

  • Thank you for your reply. Yes heres to better treatments in the future and who knows a cure. In the USA it appears to be more prevelant in younger people. Is that because testing is more thorough there or is it because CLL is effecting more younger people now. Take care Mairin

  • Hello Mairin and welcome!

    Loved reading your post and am thrilled to hear about your little girl. I am 46 and was a Midwife for 22 years but like you, have given up work now and am loving all the extra time with my family.

    I look forward to reading all your posts and if ever you get chance to attend any of the CLL Assosiation Conferences, I can highly recommend them!

    Jo

  • Hi Joloon,

    Thank you for your lovely reply its such a welcome after 9 years in isolation from others who have CLL. Yes its been lovely to have the time with my daughter but I do miss my work which I had been doing since I was 18 years old. I keep in contact with work colleagues which is great but once my daughter starts school full time next year I might look at doing some volunteer work. Who knows!

    The conferences unfortunatley are too far away from where I live however I have asked CLLSA if it is possible for a DVD to be made following conferences so that I can watch from home. I am waiting to hear.

    Take care Mairin

  • Hi Mairin

    I am a similar age to you (43) and was diagnosed at 35. My wbc is also increasing but fluctuates at times. I do have a couple of lymph nodes enlarged in my neck but generally am pretty healthy (long that may continue). I am so pleased to hear of your little one - I am sure that while this is tiring the focus and distraction that it provides will more than compensate. I have one child but he's a bit older (although time flies and it only seems 5 minutes that he was little) and in the grunting stage of early teenage years - I am told that he will grow out of it soon - I do hope so.

    How often do you have your blood checked? I am generally every six months but occasionally this has been increased to 3 monthly checks when things have increased above the typical levels for me without any explanation. I am very suprised that the pregnancy had such a positive impact on you - my haemotologist did say that if I wanted more children at the point of diagnosis that I shouldn't let CLL stop me!

    I hope you conitnue in such good health. Good luck for the future.

  • Hi NessaLou,

    I cannot tell you how good it is to not feel so alone and to have someone of a similiar age and early diagnosis as myself. Yes my daughter is a wonderful addition to our lives and although I find it very tiring I wonder whether that is more to do with being an older mum than anything to do with the CLL. Its funny you talking about your teenager as my daughter only 3yrs old can display many characteristics of a teenage girl!

    Similiar to you my wbc goes up and down, although at the last few appointments it has gone up. Similiar to you I am pretty healthy although I do suffer from undiagnosed muscular/skeletal pain for which I take pain killers. My haemotologist says that he has never come across it before in CLL but then most of the people he sees are 60+ im not that confident in him saying its not the CLL.

    For the 9 years that Ive had CLL my appointments have gone from yearly when nothing was happening to 6 monthly when it was fluctuating and now I am supposed to go every 3 months as it is increasing. I now have my blood tests at my GPs as going to hospital was causing me to panic and sometimes I would have a long wait for the results so not good really. This panic has only set in since having my daughter. I guess for me it is so important to be well and here to see her into adulthood at least. Fingers crossed. Lovely to hear from you take care Mairin

  • Hello Mairin, I'm new too, not only to this site but also to CLL (diagnosed on Monday, thanks to the persistence of a doctor concerned about my WBC). It's brilliant to have so much information and support all in one place and I am encouraged by the stories of other sufferers.

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