Hi everyone. I’m new on this chat room - CLL Support

CLL Support
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Hi everyone. I’m new on this chat room

Josh_cll
Josh_cll

Hi everyone, I’m josh and live in Leicester. I was Diagnosed with CLL in 2013 aged 32

69 Replies
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Hi. This is a brilliant forum that helps me through this odd journey I find myself on! I hope you get lots out of it too. Wishing you well.

Josh_cll
Josh_cll
in reply to Jooby59

Thank you Jooby59. Hope your well and your treatment is going well. I’m really happy I’ve joined this group as my macmillan team told me about this site. It’s scary times what’s happening with the coronavirus. 🙏🏻

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

Josh_cll
Josh_cll
in reply to Poodle2

Hi Petra nice to meet you. Yea I’m now 39 years old too👍🏻😃. Hope your well and coping with CLL. How is your treatment going.

Poodle2
Poodle2
in reply to Josh_cll

For now w&w no treatment as yet and I hope it will stay like that for a looooong time. I'm just getting a bit stressed about the pandemic and a biopsy I'm having next week but apart from that I'm ok. Are you on w&w?

Josh_cll
Josh_cll
in reply to Poodle2

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. 🙏🏻

Poodle2
Poodle2
in reply to Josh_cll

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.

Josh_cll
Josh_cll
in reply to Poodle2

Aww please don’t worry about the biopsy. I had my under my throat.

Will you be having General anaesthesia as I was.

That’s great your family at home. That’s hard work entertaining the kids. I have a nephew age 8 and it’s so lovely seeing him.

Hi Josh. Welcome to the family. You are now in a great place for Advice and support. Unsure about anything ask away. The good people here have a vast wealth of knowledge and experience. I live in Lincoln so we are neighbours.

Josh_cll
Josh_cll
in reply to Jacksc06

Thank you so much jacksc06 yes we are not to far from you. It’s so lovely meeting great people on here. 🙏🏻

You are welcome. I was diagnosed in November 2015 on my 55th birthday. I have catalogued my journey on this site warts and all good days and bad. Feel free to browse and I hope it helps. Remember you are not alone. Stay well.

Josh_cll
Josh_cll
in reply to Jacksc06

Morning Jack, hope your well. I will definitely look at your journey. Hope you have a lovely day 🙏🏻☀️

Ghounds
Ghounds
in reply to Jacksc06

Not much of a birthday present...I had a similar experience being diagnosed just before my 50th. Stay safe.

Jacksc06
Jacksc06
in reply to Ghounds

Indeed quite a birthday surprise. Stay well

Hi Josh. I live in Hinckley so close to you. Now aged 57 and diagnosed in 2016 and w and w. If u need any tips re Leicester Royal let me know.

Hi Newcastle1962. Wow we do live close. Thank you so much. Really appreciate it. 🙏🏻😊 it’s so lovely to chat to everyone as it makes you feel positive and share anything. Hope you have a great day 😃👍🏻

Diagnosed 2014 at age 33, London...Hope you're doing well.

Josh_cll
Josh_cll
in reply to SonnyJim

Morning SonnyJim. Hope your well. How’s your treatment going?

Im slowing getting better after having a stoke in late January this year. I’m trying my best to move about with is helping my joints.

Hope you have a fantastic day 😃

SonnyJim
SonnyJim
in reply to Josh_cll

I'm still on watch and wait...lots of sporadic fatigue, but that's about it. Thanks same to you.

Josh_cll
Josh_cll
in reply to SonnyJim

I wish all goes well with your treatment🙏🏻

Wow, Josh! You have the makings of your own local, in person, support group from these replies - after things get back to a more normal environment and we are back to gathering socially.

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.

Be good

Dave

Josh_cll
Josh_cll
in reply to dmtm2005

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. 👍

Josh_cll
Josh_cll
in reply to Godzuki

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 - welcome to the group. Sorry I can’t be in your group - miles away from Leicester!

Josh_cll
Josh_cll
in reply to camper2

Hi Camper2, how are you? 😃Where are you from? It’s brilliant on this site that where ever your from or how far we all live, this site brings us all together and never feel alone. How is your treatment going?

Hope your well and you have a fantastic day 🙏🏻☀️😊

Josh & Godzuki ,

I am under the watchful eye of Dr Murray Martin what about you guys ?

Regards

Dave

Josh_cll
Josh_cll
in reply to dmtm2005

Morning Dave, I see dr Murray and dr Katie. They are fantastic and lovely doctors🙏🏻 I also see my haematology Dr Kennedy. Do you see him as well? 😊

dmtm2005
dmtm2005
in reply to Josh_cll

No matey , just Murray Martin for a chat and blood tests every 6 months. 🤞🏼

Regards

Dave

Josh_cll
Josh_cll
in reply to dmtm2005

That’s great every 6 months. Did you have a bone marrow transplant stem cell?

dmtm2005
dmtm2005
in reply to Josh_cll

No Josh , no treatment whatsoever so far and may it stay like that for a very long time ! 😉

Regards

Dave

Josh_cll
Josh_cll
in reply to dmtm2005

That’s great Dave. 🙏🏻

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!

Josh_cll
Josh_cll
in reply to camper2

I wish all goes well for you🙏🏻🙏🏻🙏🏻 I can absolutely understand that it can be really stressful, just keep talking and I’m here if you ever want to chat 😃

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 claree_ford 😃 it can be so busy waiting at the haematology clinic. Yes the traffic is crazy even if you leave early. Oh yea and the car park queueing is some time heavy. How is your treatment going?

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

Hope All goes well Claire🙏🏻

Hi claree_ford ,

Looks like we are practically neighbours, I live in Waltham on the Wolds.

Regards

Dave

Hi Dave, yes, we’ve spoken before when I had a minor panic and you reassured me.... minor (and less minor) panics seem to go with the territory..... mine was an unnecessary one, but you helped all the same. Keep well. clare

Hi Josh,

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

Josh_cll
Josh_cll
in reply to Yarwis

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? 😃🙏🏻

Yarwis
Yarwis
in reply to Josh_cll

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.

Best wishes

Val

Josh_cll
Josh_cll
in reply to Yarwis

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 😃

Josh_cll
Josh_cll
in reply to Yarwis

I asked for CLL Support and they gave me Gail’s phone number. I hope she can help me😊

Yarwis
Yarwis
in reply to Josh_cll

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

media.leukaemiacare.org.uk/...

Hope it helps a little.

It's important to have support around you.

Keep in contact.

Val

Josh_cll
Josh_cll
in reply to Yarwis

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 🙏🏻

Yarwis
Yarwis
in reply to Josh_cll

Wonderful to have people who care around. Stay safe xxx

Josh_cll
Josh_cll
in reply to Yarwis

So true Val, hope you have a lovely day. Keep in touch 😊🙏🏻

Stay with us and keep reading. Nice folks on this website!

Definitely really great people here and really appreciate and grateful For all of you 🙏🏻😊

Hope your having a lovely day 🙏🏻

Welcome to the Gang. I was diagnosed 14 years ago and been through 2 treatments. The first one was really tough both physically and emotionally and I found the support here was huge. There is a wealth of knowledge and experience here so anytime your concerned just ask. All the best. Jeff

Josh_cll
Josh_cll
in reply to jaypax

Hi Jeff, I hope your well and the treatment your on is better now🙏🏻

How have you coped with work? Did you have to find another job.

jaypax
jaypax
in reply to Josh_cll

Josh, I was so fortunate that I was diagnosed after I took early retirement on health (not cll) grounds. Good luck to you. Jeff

Hi Josh, welcome. I`m new here myself. Everyone has been most welcoming. I`m not far from you in Derby.

Worrying times....I watch the news too much.

Take care.

Josh_cll
Josh_cll
in reply to nanasu

Hi😃, nice to meet you. I’m the same in watching too much news. Hope your treatment is going well 🙏🏻

nanasu
nanasu
in reply to Josh_cll

I`m not having any treatment yet.....not reached that point. Just taking it one day at time, in more ways that one now.

Are you on treatment?

Josh_cll
Josh_cll
in reply to nanasu

I’m having treatment for my immune system, for my CLL, I was having venetoclax but the doctors have put that on hold as I had a stoke and want to give my body time.

Hi Josh, welcome to the site. I was diagnosed with CLL 2 years ago and recently found the site too. On W&W and dread the check ups just in case. I’m self isolating now as Bloodwise says CLL even on W&W at risk. V scary. Apparently government advice for likes of us coming out next week. Stay safe. M

Josh_cll
Josh_cll
in reply to Miggins60

Hi M😃 hope your treatment is going well. How are you feeling? Yes it’s really scary what’s happening with the virus but we are good from not going in risky places for our own health.

Hope your having a lovely day 🙏🏻😊

Miggins60
Miggins60
in reply to Josh_cll

All fine thanks Josh. Keep well. M

Welcome Josh_cll! I was just diagnosed in December 2019/January 2020. This group has been a Godsend for me!!!!

Josh_cll
Josh_cll
in reply to Horatio2

Hi Horatio2😃🙏🏻 Your totally right this is a great group. Hope your treatment is going well. I go to the Leicester hospital. Where do you go?

Horatio2
Horatio2
in reply to Josh_cll

Hey Josh_cll... I live in the US, and I am in wait & watch right now. I'm hoping I won't have to have treatment for a long time. :-)

Josh_cll
Josh_cll
in reply to Horatio2

Hi Horatio2 I wish you all the best and you get better fast 🙏🏻😊 wow you live far away. Hope to keep in touch, take care and hope you have a lovely day 😃

Welcome, Josh. This is a place of information and support - an amazing community. It's made up of thousands of people around the world, but the care feels personal.

marcyh

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