Hello all,
My name is Lyndon, im 46 and was diagnosed with Chronic lymphocytic leukaemia (CLL) last week after having high white blood cells and lymphocytes for months.
This is all very nerve wracking for myself and my wife who is supporting me and i thought i would join the forum to either get advise or talk with people who are going through the same experience.
Thank you.
Hello @Hellwalker78
A huge Welcome to the Forum, we are so pleased you found us and decided to join.
I’m sure this Forum will help you to realise that you are not on your own, especially in the early days/weeks of your new Chronic lymphocytic leukaemia (CLL) diagnosis.
There are lots of Forum users that have Chronic lymphocytic leukaemia (CLL) and I’m sure in time they’ll post here and share their experiences with you.
It’s lovely to read your wife is supporting you, and also very understandable that you are both worried and nervous. Do have a look through our website there is some wonderful information for both of you, that can be really helpful including living well with blood cancer.
Your wife might like to read when a Family Member has blood cancer
Please do keep posting, asking questions (there are no stupid questions on this Forum), telling us how you are coping (or not coping), basically whatever is going through your head because of your Chronic lymphocytic leukaemia (CLL).
We also have a Support Line, it’s open Monday to Friday 10am - 4pm, you or your wife can call, if you ever want more support or information: 0808 2080 888.
Take care, Heidi.
Hi Heidi,
Thanks for the lovely welcome, the last week has been hard with a whole load of information to take in with regards to well being and understanding the condition.
I am really worried about the infections side as i already have an eye infection which i am going to see GP tomorrow about but i dont want to bother them over every infection I have if I think its not to serious??
Thanks for your time
Kind regards
Lyndon
Another great big welcome from me too @Hellwalker78
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 20 yrs ago at the age of 53yrs old, and I have been on ‘watch and wait’ also called ‘active monitoring’ ever since.
As I read your post I remember feeling the same as you, the unknown is scary.
In the days when I was diagnosed there were not reliable websites or supportive forums.
I thought I was the the only person in the world in the position I was and felt in a bubble with the world going on around me.
I could not explain to work what I did not understand myself, I also did not keep communicating with them enough.
I find this is the one place where i know I can be really honest about how it is for me.
I expect you will both have lots of fears, questions and practicalities whizzing around and now is your opportunity for you both to write them all down to ask at your next appointment.
You will probably get a specialist nurse contact and they are a good contact for you both as well.
Please do look at the Blood Cancer UK website too for ideas about work, finances amongst other things.
Perhaps you are both in shock and for me that took a long time to subside.
Just look after, spoil yourselves and do lovely things and please do keep posting I look forward to hearing more about you.
Hey there Lyndon AKA @Hellwalker78, a great big welcome to the forum. Really glad you found us, I hope it comes to be as helpful here for you as it is for me.
I’m so sorry to read of your diagnosis and very understandable worries regarding what to expect and how ailments like that infection might affect you. It’s great that your wife is there supporting you, perhaps in time you’ll feel able to lean on other loved ones too. It can feel tricky to share this sort of shock so perhaps take your time.
It’s not surprising how nerve-wracking all this is for you. After my own diagnosis last year with a different blood cancer, Polycythaemia vera (PV), I found having loved ones to talk with about my worries was so helpful in between all the tests and awaiting results.
Personal therapy was also essential for me but I understand that it’s not always accessible or appropriate for all. Distracting yourself now with healthy activities can help, like whatever exercise you enjoy. I’m partial to hiking and watching too many films!
It’s great to advocate for yourself, and so soon after diagnosis, and I hope you feel you can get answers from your specialists. You’ve already had such lovely support here from dear @Heidi_BloodCancerUK and @Erica and perhaps the last thing you want is to read more about Chronic lymphocytic leukaemia (CLL) but the Blood Cancer UK information is really well researched: Chronic lymphocytic leukaemia (CLL) | Blood Cancer UK
One bit of reassurance I can offer from my non-medical point of view is that having a chronic form of blood cancer means it’s slow-growing and might never need the types of scary treatment we tend to see in the news/on film. Like @Erica shows, these blood disorders can be lived with healthily for many years with minimal adjustment.
I hope it goes well with the doctor tomorrow, it’s great that you’re getting that infection checked out. I’d say always get anything checked out that concerns you.
Really glad you found the forum Lyndon, do please keep posting about how you get on.
Hi Erica,
Thank you for your lovely comments, I still dont think it has really sunk in yet as I’ve not shown any real signs of being upset or perhaps having a numb feeling.
I will certainly keep everyone updated.
Kind regards
Lyndon
Hi Duncan,
Thank you for your kind comments, I do have other family members who I have the support of aswell and luckily a family member is a cancer nurse who has said if I have any questions she is there for me.
With regards to activities I’m afraid work takes up the most time, unfortunately I also have a curvature of the lower spine so I experience a lot of back pain so when I get home in in pain and now experience a lot of fatigue.
Kind regards
Lyndon
You’re more than welcome @Hellwalker78, this is exactly what the forum is great for! It’s also great that you have a cancer nurse in the family, I bet they’ll be enormous support. Have to say, the medical jargon can get a bit confusing so having someone you can ask to explain stuff will be so helpful.
Sorry to read of that back pain, I can appreciate how that makes keeping active much harder. Perhaps you’d be surprised to know that slow stretchy exercise like yoga and Pilates can be really good for us, even with movement difficulties? I read not long after my diagnosis some cancer research that shows doing stretchy exercise can really help improve energy levels, somewhat counterintuitively! I had terrible fatigue after I started taking daily chemotherapy but doing a some slow yoga at home in front of Apple TV+ did help give me more energy. Anyway, you know your body best so keep that blood pumping in whatever way you enjoy.
I think that’s the main thing right now, to maintain your life as it is, to rest when you can and resume activities later if you’re fatigued in the moment. Stress can be exhausting so maybe expect to feel more tired than usual right now and remember to treat yourself—you’re now a cancer survivor so give yourself a break when you can!
Went to doctors and its just conjunctivitis in both eyes and got drops for but doctors did not know anything about my diagnosis and was disgusted to find I’d been told over the phone (not sure if thats normal as don’t need treatment straight away).
They have gone mad so ive stired up a bees nest lol
Kind regards
Lyndon
Oh I’m sorry you’ve got that infection Lyndon, that’s got to be literally irritating. At least now you know what you’re dealing with. When we’re stressed our immune systems can be weakened and pesky infections can take over. Sorry you’ve got that discomfort going on right now, I know how grim conjunctivitis can be.
Although it sounds like you haven’t been prescribed medicine for the Chronic lymphocytic leukaemia (CLL), try to think of being on active monitoring/watch and wait as your treatment. You’ll still be checked and have blood tests like others with similar and different blood cancers, but as yours is chronic it’ll be monitored over time for any changes.
I’m glad your doctor is on your side regarding your shock diagnosis! Now they’re aware of it too you can ask them for support in chivvying things along with your haematologist. I’m sorry to say that you’re not alone in receiving such a massive diagnosis in such a blasé way.
My own diagnosis was unfortunately via an uncaring haematologist that minimised my symptoms. I tolerated him up to the point that he made mistakes and forgot the treatment he’d prescribed me and was fortunate to be able to change to a more holistic and caring haematologist and my health improved loads. Wonder why?!
So, good for you for stirring stuff up! Personally I think poor care from these specialists who see us so infrequently is unacceptable when we have to live with the symptoms and medicine side effects day in and day out.
I’ll keep my fingers crossed that your haematology department can bring forward your appointments, don’t forget to politely nag them. There’s always PALS to support you should you need it, have a google of them as they’re a great resource when things don’t quite work with healthcare.
Keep us posted about how things go @Hellwalker78. Maybe have a look around the forum to see how others get on living with Chronic lymphocytic leukaemia (CLL). Mind your stress and I hope you recover quickly from that aggravating eye stuff!
Hi @Hellwalker78 I also have curvature of the spine, probably higher up than yours and several compressed previously fractured lower vertebrae.
I am a Pilates girl and a walker and yes, I do get pain from my back.
Fresh air also helps me and actually sometimes my fatigue.
I was diagnosed by a gynaecologist which was scary.
It sounds as if you have a good GP.
Look after yourself and do what works for you and please do keep posting.
Hiya @Hellwalker78
I too have Chronic lymphocytic leukaemia (CLL) , was diagnosed last year at the grand age of 54
It’s really scary when you first hear those words isn’t it .
I am on watch and wait too and my worst symptoms are around fatigue…… especially after a long day at work. so if you have back pain that must be really tough .
I find that walking and fresh air often helps me when I feel really fatigued, seems counterintuitive but it can. Be helpful
Please be really kind to yourself and take care
Thinking of you
Best wishes
Hi DottieB,
Thanks for your kind comments, yes fatigue is terrible but we just have to take each day at a time.
Thinking of you too
Kind regards
Lyndon