As I have been recently diagnosed (Dec 23rd 2022)I just wanted to drop a quick post on here to introduce myself and Thank you for the lovely messages I have received so far. It's so important to have this community of people who can relate to each other.
My CLL was diagnosed following bloods being taken for a separate kidney issue I have been dealing with. As a routine part of the testing / investigation, the docs wanted to take bloods to check for kidney function amongst other things. They found my counts to be high, they thought it was an error so re tested me.
Following months of blood tests, and appts with the consultant, they diagnosed me last Dec with CLL and put me on W&W.... To say I was shocked would be an understatement. It knocked me back on my heels!
I have 2 young children and a really supportive fiancée, and I likened this diagnosis to the stages of grief when I lost my father to Pancreatic cancer. I think it's going to take me some time, but I'm ok with that, and I'm at peace with it now. I just need to re adjust.
I just want to focus on my family, enjoying life (hence my name on here - The Simple Life) and all the wonderful things we enjoy as a family. The simple pleasure of listening to waves on a beach whilst digging the sand with my children, walking our dog through the forests in Wales etc.
I don't know what's in front of me... But I'll give it everything I have! I can't think of any questions I have at the moment but I know you're all there should I think of one ... 👍
Thanks all!
Gareth
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The_simple_life
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Welcome to the place no-one wants to be - but definitely the best place for those who need it. Hopefully you'll get a prolonged period on W&W, but if not, treatments are great. Best of luck!
From one young patient with kids to another - welcome! I think you've already cracked the code for W&W with your user name. Simple and low stress is a great way to approach W&W. May yours last a REALLY long time!
Hi Gareth! That's an awesome approach to your diagnosis. In the end, our life goals don't change, do they? Family, friends, simple pleasures. I'm on W&W myself (unmutated, 13q), and I find life is even more precious and wonderful. Peace.
Hi - welcome - everyone here is extremely warm and supportive. Each of us has our own medical path but you can gain support from everyone here as much as you want. This is the most supportive board. I feel grateful to have learned each day from the members and leaders here bc it really can be very confusing and unclear.
Welcome. I have found this group and the UK CLL Support Association really useful. It's worth knowing that one of the things you can do at this stage is get yourself vaccinated. There are posts here which list the vaccinations your consultant should recommend. These include two pneumonia vaccinations, Hib, meningitis and of course flu and extra Covid vaccinations. I find psychologically it is good to know that there are things we can do now to invest in our immune systems for the future.
I was diagnosed in August 2022. I was only having a general health check. It came as such a shock- so I understand how it must have hit you. I’m still acclimatising, so you are doing well. Take good care of yourself.
Hi Simple life. Similar to you recently diagnosed in September last year with no prior warning. I do feel more down now than I did at diagnosis. Partly my thinking time was taking up with gaining more knowledge and partly realisation that it is all a battle to get the right care even when you don’t need treatment. My headspace issue is worry about the future, for me and my daughter who has had her own health diagnosis. I am a ‘youngish’ CLL patient but an older mother, so guilt is kicking in. So educate yourself but do watch out for delayed shock/ depression.
CLL is typically found when looking at something else. It’s sounds like you are young to be diagnosed with CLL. I was 49 and diagnosed when I was very unwell with an infection.
The good news is that treatments for CLL have advanced in the last 10 years. Chemo is now rarely used, and we mostly use inhibitors to manage CLL over many years.
There are some more risky mutations to CLL, but again with the new inhibitors that is not so relevant now.
Everyone here will understand how you are feeling. Cancer diagnosis are difficult, devastating and consume you. Try to stay positive, do something everyday that makes you feel glad you’re alive. Do not allow you cancer to define you!
Many people with CLL live for decades with the current treatments, and new treatments are coming online all the time. You still on watch and wait, and depending on your mutation (mutated or unmutated) some don’t need treatment for years, and some never do
You will be just fine my fried. Stay healthy, stay for, enjoy your family and life.
Hi glad you found this site. You get good information fast here!
I just saw a flier at my CLL specialist's waiting room for a new program in development for supporting cancer patients. It is called "Living Grief", for patients just learning they have cancer. Apparently this hasn't been addressed in a structured way. Sounds like what you describe happening to you.
I know the diagnosis was just thrown at me, leaving me to cope alone, being recently widowed at the time. HU has been a lifesaver. So much to learn that I felt I was taking an honors college course, but began to relax the more I read on here.
I thought I'd just offer you a little encouragement. I was diagnosed at 39 with an 18 month old son and I was worried I wouldn't see him grow up. I will be 68 in a couple of weeks and my son will be 30 later this year.
My first treatment in 1995-6 I would describe as brutal, my second in 2007 was unpleasant and the targeted drugs I started last September are a walk in the park.
Focus on the important things in life and with a little luck you should be around for a long long time.
The_simple_life, your message adds to the positive personality of this group. As Jammin_Me and LeoPa have already said, "Bring on all your questions!" There is absolutely no unimportant questions. This group has been my "sanity". There is so much erred info on the internet. Here, you receive actual experiences straight from the "horses' mouths". (A SLANG TERM meaning, you hear info from real people living it!) I am so glad you have joined this group. 🙂 Sandra
Thank you all for kind words of encouragement and support. I'm glad I found such a great community of people who are all living with CLL. I've found the internet to be a real mixed bag of info, some positive and some not so much. It's hard to cut through the noise and get to the facts but with this group ... We are all connected by CLL but all fighting this in our own way and sharing experiences. All of Your offer of support is reciprocated! I'll try and add my blend of Northern / Welsh humour to my outlook and to my responses as it's the only way I know how.
Keep positive and don't use Google!! I've read all the responses you've been sent and there is nothing more to add to their words of wisdom and support except I'm looking out over the river Dee at the Welsh mountains and enjoying the view
you’re whole life is in front of you as it is us all. No one wants this but it teaches us so very much and frankly there’s never been a better time to be diagnosed with it with some incredible targeted therapy drugs! Pls don’t think me glib, I do encourage you that this is not the end of the world even if some days it feels like it!
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