Hi everyone, I’m josh and live in Leicester. I was Diagnosed with CLL in 2013 aged 32
Hi everyone. I’m new on this chat room - CLL Support
Hi Josh, my cousin lives in Leicester and whenever I speak to him he starts selling me the city like crazy. He would love us to move there. I'm Petra, live in London. I was diagnosed in July 2019, aged 39 so I think we might have been born in the same year! 1980? Or I might be a year older Hope you are doing well especially now. Take care. Petra
Yes I’m a bit worried about this pandemic too. What Biopsy are you having? Is it a bone marrow biopsy?
I haven’t been working for 6 years as I had a lot of problems with my health. I’ve been on this treatment tablet last year called venetoclax which has controlled the CLL
It’s good your working from home. 🙏🏻
One of my nodes, under my jawline. I thought nothing of it so it threw me a bit. Sorry to hear you have had health problems - assuming they were linked to your CLL...but it's great to hear the treatment is working for you. From reading other posts it sounds like your medication can work magic for some CLLers. ...oh yeah I'm working from home 🙂that made me laugh - I'm on maternity leave and trying to entertain three kids under 6 while keeping the noise level down so hubby can work from home! Glad you have found this forum.
Morning Mslockypurpost 🙏🏻 Thank you so much. Definitely agree with you that once every settles down we can get back to socialising.
The great think is we got this amazing group and never feel online. This site is making me feel happy and meeting wonderful inspiring people🙏🏻😊
Hope you have a lovely day ☀️🙏🏻
Good morning Josh ,
welcome to our 'Gang' , we are a great bunch who listen , advise (where we can) , but yet all still learn more all the time about the 'Monster' that decided to take up residency with us.
I live in Leicestershire (Waltham On The Wolds) and was diagnosed May 2018 at the age of 53 , currently on W&W with my fingers crossed.
Morning Dave. You’re absolutely right we can learn from each other and share feelings and get help. 🙏🏻🙏🏻 Hope your treatment is going well.
I’m hoping to find a job after this Coronavirus goes. I haven’t worked for a while due to being unwell a lot of the times, but I’m feeling I can start soon as I’m feeling better.
Hope you have a fantastic day 😊
Hi Josh, I'm 45 and also live in Leicester, on watch and wait and diagnosed two years ago. This forum is fantastic and whilst it's tough to assimilate all the information initially you really have found a great community to help with questions you'll inevitably have. After two and a bit years of living with this condition my experience is it really does get easier and I barely even think about it now with the exception of 6m regular blood tests. 👍
Morning Godzuki, so nice to meet you. Hope your treatment is going well🙏🏻😊 you’re right this Community chat site is wonderful. I feel happy meeting many lovely people like yourself. After being diagnose 6 years ago my treatment this time is helping and feeling a bit better. Hope you a great day 🙏🏻☀️
Hi Josh - I’m Essex and still W&W for now - but probably heading for treatment this year as white count doubling time is getting shorter. The longer I can delay that the better and I really feel for those entering treatment/ undergoing treatment at the moment; it’s stressful enough without CV in the mix!
Hi Josh, I live near Melton Mowbray - diagnosed 2017, happily still a boring patient under the 30,000 (just). Being so boring (hurrah) i haven’t seen Doctor Kennedy yet but officially he is my consultant..... I have seen a lovely lady with a complicated name that I have forgotten who is a haematologist who monitors.... had fun finding LRI the first time I went - Leicester traffic is - interesting. Good luck to you.
Hi Josh, happily still on watch and wait - numbers progressing faster than I’d hoped but a lot slower than I’d feared. I was 63 when I was diagnosed - with 20-20 hindsight the signs were there on a blood test two years previously. So far only minor issues - I feel very fortunate about that. Also fortunate that this is now and not a few decades back.... keep safe and well. Clare
Welcome, I live in Nottingham and I was diagnosed at 36, 26 years ago.
I have had a Stem Cell Transplant and Donor Lymphocyte infusion years ago. Now on a trial with Zanubrutinib which appears to be working.
You sound really positive, which is great for coping with this journey.
I hope you continue to feel well and find good employment once these strange times are over.
Best wishes, Val
Hi Val, it’s so lovely meeting you. That’s fantastic the Zanubrutinib is working and I wish everything goes well for you🙏🏻 I try my best to remain positive and some days it’s hard but coming here and chat and talking to the nurses it really helps a lot. As you had this for 26 years, how have you manage with job, family, friends and going holiday.
I’ve had CLL 6 or 7 years and I was working but had to give it and never got a job. But I’m having anxiety And so much fear going back work as I don’t know what to do or who to ask for help. How did you cope? 😃🙏🏻
I was pregnant with my first child when I was first diagnosed and no symptoms for few years. I had my second child and after that my glands started to enlarge and got more frequent infections until I needed treatment in 1998 (4 years after diagnosis).
At first I was okay working, but I finished work at the end of 1995 as I had 2 small children by then.
I did try going back to work a few years later but found it hard so found work to do at home. After my DLI in 2003 I was very ill and it took me 8 years before I was well enough to work.
I had been a paediatric physio but didn't think I could cope with that again but went into a secondary school to support a student with cerebral palsy and later into general learning support. The shorter hours and longer holidays certainly helped.
It begin to get too much when I was 60 - nearly 3 years ago. I was tiring more easily. I tried cutting down my hours but finished a few months later when the prospect of lower numbers of staff and so increased workload forced me into making a decision about work/life balance. My husband encouraged me to take early retirement. I have not regretted it and have since started treatment again.
For me, I was concerned that I might not be able to cope with work after so much illness which had left me very weak, and so so started on a temporary contract but it soon went to permanent.
I understand that it is daunting to start looking at working again. Have you contacted CLL Support or Leukaemia Care? They may have information about support back into work.
Also, did you know that there is an Under 60s CLL WhatsApp group? They are very supportive. Let me know if you are interested and I'll give you their contact details.
Sorry this is so long but I hope it helps a little. I can get any contact details for you.
Thank you so much Val. You have gone through a lot and are so Inspiring how much you have done🙏🏻 I’m on the CLL under 60s group chat. Gail invited me on that chat group. I haven’t used it. I joined that group in January but I had a stoke, I couldn’t move my left side and it was impossible to text or move. But slowly I got my movement back and able to text and write 😃
Oh wow! You have really been through the mill! I'm really glad you are improving physically. Have you got family support?
I don't know if this helps but I am sharing the link for a booklet Leukaemia Care produce regarding employment
Hope it helps a little.
It's important to have support around you.
Keep in contact.
Hi Val, I have my parents and 2 sisters. They are all so lovely.
My local gym bless them did a charity bike ride to Leicester and Skegness. They raised a lot of money for leukaemia charity and they gave me money to help me and my family. I was shocked and so grateful for what they did.
Thank you for that link 🙏🏻