Hi, I was just recently diagnosed with Chronic lymphocytic leukaemia (CLL), as like you all it came as I great shock. Especially when I was still Mourning the passing of my Husband a year ago on the 26th Feb, I also lost my Mum in July and recently my dad in January of this year. So much to come to terms with and now this. Our Children can’t believe this is happening. My consultant has told me I’ll be on watch and wait. They found out through my annual blood test, I have noticed that I tend to nod off after doing simple jobs around the house etc, I just put it down to age creeping up on me. ( 65 ). I would be so grateful for any information you could give me, there’s so much to try and take in. Wishing you all well and keeping yourselves safe. Best regards Julie
Dear @Geordie57, thank you so much for posting and welcome to the Forum. You have have been through such a terrible time, may I ask how you are feeling apart from the shock and fatigue? Have you been allocated a Clinical Nurse Specialist who you can call for support and information? If not I would ask the Consultant next time for those details.
Our information on Chronic lymphocytic leukaemia (CLL) is here https://bloodcancer.org.uk/understanding-blood-cancer/leukaemia/chronic-lymphocytic-leukaemia/ and it does include a specific section on watch and wait that you may find useful Watch and wait for CLL | Blood Cancer UK We are more than happy to chat with you over the phone or by email if that helps How to contact Blood Cancer UK | Blood Cancer UK Take care Gemma
Hi @Geordie57 a great big welcome I am so glad that you have found us.
On top of your shock of diagnosis you have had so many, very close, family losses.
This is also in Covid times.
Everything must be so overwhelming and your head all over the place.
You say your children can’t believe this is happening, I don’t expect you can either.
I expect that each of you will be going through your own unique processes in your own ways and times, I don’t think that there is any right or wrong ways.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) at 53yrs old and I am now 72yrs old.
I have always been on ‘watch and wait’ and yes, fatigue is the symptom I have learnt to understand and manage over the years.
I am prone to needing the odd nap and at other times fresh air and appropriate exercise help me. I am a walker and pilates girl.
I am not much use in the evenings.
I still get anxious before, during and after medical appointments.
I have to write my questions down before appointments as I walk into medical offices and my mind goes blank.
If you would like to speak to someone please give the Blood Cancer UK support line a ring, they are wonderful and @GemmaBloodCancerUK has given you brilliant information.
You now have us here too, I find our forum so supportive, please do ask anything you might like to know.
Be kind to yourself and really look after yourself and please keep posting.
Hi @Geordie57 , really sorry for your diagnosis. I was diagnosed with Acute Myeloid Leukaemia 3 years ago a few days after my Mother died. It all came as a huge shock and took a few weeks to sink in.
I rationalised it in my head by reasoning that I couldn’t choose to change these facts, so couldn’t change my situation. I therefore decided to accept the (horrible) situation and to be as positive as possible about the situation and vowed to continue to live, laugh and enjoy life (apart from the Chemo and its after effects!! which are a little more difficult to enjoy!!!).
A difficult situation, but not one that I can change. So I am staying happy and positive.
Good luck with everything. Keep Posting!
I do hope you’re okay @Geordie57 - you’ve clearly been through a huge amount these past couple of years, I’m so sorry. I just wanted to add to the other responses you’ve had to say that we have just produced a newly updated Chronic lymphocytic leukaemia (CLL) booklet which you’d be so welcome to order for free here - Chronic lymphocytic leukaemia (CLL) booklet | Blood Cancer UK Shop
Hi Julie i have just recently been diagnosed withh Chronic lymphocytic leukaemia (CLL). Shock is not the word! Sorry you have lost the people close to you in life and so soon after had this diagnosis!! Hopefully we can share a lot as we have started this journey at a similar time in our life i am 61. This is my first share as i stumbled across this forum by accident. Good luck.
Welcome to the forum @Costy . It’s great that you found us and you’re absolutely right, it’s a great place to share experiences and support each other. We’ve all either had diagnosis experiences or are close to someone who has and you’re totally correct about the shock and the massive change that it makes to the lives of those affected. Keep in touch with us and let us know how you are getting on if you feel able to share.
Hi @Costy and @Geordie57.
A great big welcome to our forum @costy and fellow Chronic lymphocytic leukaemia (CLL)’er and you can read a bit about me above.
You are now part of our forum family and if you would like to speak to someone the Blood Cancer UK support line is there for you.
I look forward to hearing more about you.
Look after yourselves and keep posting
My partner was diagnosed in June aged 58 following a blood teat for a referral. We are still processing things but what i have noticed is that he has been more tired then he has ever been before and in the 9 months before diagnosis had 4 infections which was unusual. Since diagnosis he has had 2 further infections. He is very much continuing as normal for now as currently he is watch and wait but he has prognosis and genetic mutation markers due in 6 weeks before the next Haematology appointment in 8 weeks. We have a holiday before then so focusing on enjoying that. I have found this forum a great safe space and i hope you do as you can be very honest and no one judges.
Please do keep letting us know how you are both doing and be kind to yourselves @Jujuju99
Hi @Jujuju99 I have been thinking about you both and I just wondered how things are going.
Look after yourself
Hi Erica, we are doing ok, my OH is opening up to more friends about what he has. He is still keeping a diary and is taking multivitamins to try and help with the fatigue. He has been battling a cold for almost two weeks now that is making him breathless at times but doesnt want to bother anyone so tomorrow i am brining home a pulse ox to check his levels and also getting him to do a covid test. We have booked our next holiday for June to go back to Italy, which we love so that we have something to look forward to. How are you keeping?
Hi @Jujuju99 I am well thank you but having one of those days when I am feeling very fatigued, I think I overdid it yesterday, I never learn!!!
Italy in June sounds wonderful to me.
How are you feeling now? My OH is feeling much better now he has finished his antibiotics. No more breathlessness which is good. He is away this weekend for works do so i am spending time with my mum and relaxing
So sorry for all your pain and sorrow I can relate to losing family ! Chronic lymphocytic leukaemia (CLL) is a shock and then you wait ! It’s almost like the doctors just go by the the numbers of lymphocytes instead of how you feel ! I got first live shingle shot and now I get shingles once a month because it’s a live virus !! I do have advice which I am now starting infusions with vitamins need B 12 and other B’s , C , D, magnesium! But vitamin D and B12 I received in a shot because they said works better and D really made me feel good! Hope you feel well I know about being tired My mind says go for a walk my body says no ! Hope I shed some light on Chronic lymphocytic leukaemia (CLL)
Hi @Karen I also got shingles when we moved home in 2013.
Now as soon as I get run down or stressed out the shingles comes whizzing back even though I had the non live shingles vaccine 2 yrs ago.
I also have Chronic lymphocytic leukaemia (CLL)
Look after yourself
I get it everytime I am stressed out and I have a husband with Type A and very hard he doesn’t understand his stress is number 1 stressed for Chronic lymphocytic leukaemia (CLL)!! Hope you are doing well
Hi @Karen what I have learnt is that everyone deals with and processes things in their own unique way and time, there is no right or wrong.
My husband has a head in the sand approach!!!
Be kind to yourselves