Hi, I’m Lorna. Im 46 and was diagnosed with Chronic lymphocytic leukaemia (CLL) in September. Be great to read other people’s stories.
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Hi Lorna, I’m Adam and I’m 39, I was diagnosed with B Cell Marginal Zone Non Hodgkin’s lymphoma in June. On watch and wait after having 3 lesions removed. Are you having treatment?
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Hi Adam, thanks for replying and I’m sorry to hear about your diagnosis.
I am on watch and wait currently. I’m very fatigued and still processing it all.
Lorna
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Fatigue is hard, it’s a complete reshuffling of how you live your life. I have days where even getting up off the sofa takes all my effort. I find it’s really bad, I lie completely still for ten to twenty mins if I can and that helps.
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I’ve started yoga for relaxation and to find some calmness. I have not heard of your type of blood cancer and realising quickly there are so many types.
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Dear @Loz1977
Welcome to the forum and I do hope that you find this an informative and supportive space.
We just wanted to offer you our support and some of the resources we have here at Blood Cancer UK. The Support Services are here for you to talk through any concerns or information needs you may have: Blood cancer information and support by phone and email | Blood Cancer UK
Here are our webpages that concentrate on Chronic lymphocytic leukaemia (CLL): Chronic lymphocytic leukaemia (CLL) - what is it, symptoms and treatment | Blood Cancer UK
If there are any specific needs that you have please do get in touch and do take care.
Gemma
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A great big welcome to our forum from a fellow Chronic lymphocytic leukaemia (CLL)’er.
I was diagnosed 19 yrs ago and I have been a very lucky girl and always been on watch and wait or active monitoring.
I am a great fresh air and walking and pilates girl.
How are you feeling and dealing with the emotional aspects?
Do you have any symptoms?
If you have any questions I would be happy to answer them.
The main thing is that you look after yourself, I remember that I was in shock for a long time.
I can also replay my diagnosis today.
Please do keep posting as I look forward to hearing more about you.
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Hi Erica
Thank you for relying to me, very comforting and kind. I have 3 young children and work full time. I’ve always loved going to the gym, exercise classes and going out with friends. Im quite tired recently and aching a lot. I have some enlarged lymph nodes to my neck. I’m still processing the diagnosis and I want to continue doing everything enjoy. I was in complete denial prior to seeing the consultant and didn’t really believe it at the appointment. I’ve recently started yoga to find some peace and calmness. Hope to hear from you again.
Lorna
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Oh, don’t you worry I am often around on our forum @Loz1977.
I was diagnosed at 53 yrs old, so my son was 30yrs old and I was working full time with 2 or 3 part time jobs.
I came home from my diagnosis and wrote my will and funeral music,
I thought I would never see my son married or have grandchildren, he will be 50yrs old next month and he is still not married!!!
I was always the organised, putting everyone else first person.
One of the part time jobs was a Registrar of Marriages. I had to give that one up as I was prone to feinting whilst standing at that time, not a good look.
It was before the time of employers having to make ‘reasonable adjustments’. I could give a talk sitting, but not standing as an example.
I will be honest I really worked, slept and ran a home for years.
I did not have the energy for anything else.
I could hardly walk any distance and really had to build that up.
I don’t remember aching a lot, but I do really remember the fatigue.
I have got to know myself and how I tick over the years.
Since diagnosis my thoughts and emotions have been on high alert, I am far more emotional and can easily burst into tears at the least thing, especially anything around cancers.
I do not now deal with what personally stresses me well and my fatigue can come on if I overdo it emotionally, psychologically, physical or practically and it can come on either immediately or up to 48hrs after the event.
About 10 yrs later I got osteoporosis and scoliosis and that was when I started pilates and dance classes.
At lockdown I started walking with my music playing on my Walkman and continue it today, we have some lovely walks around here.
My 70th birthday was my best ever, me and my Colin the Caterpillar cake
I believe in self care (which is not the same as being selfish) and I have learnt to say ‘No’ to taking on commitments.
If I meet up with friends we go out at lunchtime.
I am now fitter than I have ever been in my life.
3 young children and a full time job must be exhausting for you
Perhaps just give yourself time to process it all, be ever so kind to yourself and please keep posting
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Dear Erica
How inspiring your story is. In fact, I’d read your story on the day i was diagnosed from the Chronic lymphocytic leukaemia (CLL) handbook they gave me.
I did a pilates class last week and loved it and i recently did a summer steps challenge walking daily. So much better than a gym and i want to avoid catching infections. I’ve found telling people about the diagnosis exhausting due to a lack of understanding about blood cancer and comments such as " but you look really well". When, in fact inside I’m not…im starting to look at life differently and want to leave a job and career ive done for many yrs. This is because it’s stressful and fast paced. It just won’t protect my emotional well-being long term.
Lorna
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Hi @Loz1977 my pet hate is people telling me 'oh you do look well whe I am feeling rubbish inside.
People just cannot understand or know what to do or say and want to make it better…
Another Pilates convert it has saved my back and really helped my core muscles.
I also decided what I wanted to do and with whom
Emotional well being is so important
I look forward to hearing more about you
I also hope others will share their experiences
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I agree 100% @Erica. It is one of the hardest things I have to deal with when people comment on how well I look. I get far more understanding and sympathy about the fact I am still wearing a support boot on my fractured foot than my blood cancer! I think if you don’t ‘look like’ you have blood cancer (whatever that might mean) then everyone just expects you to carry on exactly as you did before your diagnosis. They seem oblivious to the fact that a lot of the time there isn’t anything to ‘see’ especially if you are living with a chronic blood cancer. Fatigue and pain, for example don’t show especially in those of us who are programmed to wear a smile all the time. Very hard, but it’s so good to find people on this forum who understand. Warm wishes, Willow x
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Oh, @Loz1977 and @Willow I have that default smiley mask from childhood.
I was given the part in a play at school as the Cheshire Cat.
Hardly anyone apart from my friends on here know what is really going on behind that mask.
Yes, @Willow I can imagine you do get more sympathy about your foot. How are you really doing and I note you are still wearing your boot?
That’s why we have to be really kind to ourselves and even give ourselves a cuddle once in a while!! xx
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Hi @Loz1977
I just wanted to add I get the you look really well all the time that I think I’m not taken seriously enough about how immunocompromised I am I have myeloma.
I’m sure people think we should be bed ridden with a bald head to be ill.
I’m not one to be sitting still although I now say start the washing up and it takes a longer time to do it as I have to sit down as my back aches
I keep fit via zoom I do yoga via zoom also mindfullness drop in and meditation
I also use my Fitbit to try and do 10,000 steps around my house as I’m still shielding
Fatigue is daily I just rest when my body says and call it my rest/healing time
Back to telling people about our conditions I had a few booklets I gave out.
Here is one from Macmillan
Having these diagnosis sure does make you evaluate what is important in life
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Hi Lorna. I too was diagnosed with Chronic lymphocytic leukaemia (CLL) in September 23. The NHS has been incredible. I saw a haematologist very quickly and am now on watch and wait. Can I suggest you order the free Chronic lymphocytic leukaemia (CLL) publications from Blood Cancer UK. They are very clear and helped me enormously. My biggest challenge has been telling my children. Friends have been easier but the kids, very difficult. My mood goes up and down a bit but generally ok. I’m very happily married which definitely helps. Do feel free to reach out anytime. All the best. DermotR
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Hello Dermot,
Thanks for your reply. I have the Chronic lymphocytic leukaemia (CLL) booklet which has been really useful. My children are at a crucial age in their education, so that is the reason for delaying telling them.
Can i ask how old you are Dermot? I only ask because my Consultant did remark i was on the young side to have Chronic lymphocytic leukaemia (CLL). I am 46.
Take care
Lorna
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Im 71, go to the gym everyday, working at my marketing agency and running a bed and breakfast at home! Three kids, six grandchildren and a very busy chap!
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Oh wow! That is busy indeed! Good for you. I am sure such a big family offers you support too!
Lorna
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Feel free to talk any time. I’m so happy to connect to people who get the challenges of Chronic lymphocytic leukaemia (CLL).
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Hi @Loz1977 I was diagnosed with Chronic lymphocytic leukaemia (CLL) at 53 yrs old if that helps