A bit ignorant!

[paulamarie]

I was diagnosed with cll/sll in January this year. Am due to go back in August. I have no idea what stage i am at... or what to expect!! Am grateful for anyone who is in the same boat to give me some pointers. Thanks my friends. x

[Myrddin]

Welcome to the club - not one we would have chosen to join. Many will remember how they felt so understand what you are going through. This link, cllsupport.org.uk/cll-sll/s... might be helpful If you have

not already seen it already.

If your next appointment was scheduled 7 months after diagnosis it is unlikely that there is anything to worry about. Usually you would have a few appointments 3 months apart to see how things change and then hopefully settle on 6 month or annual blood tests.

Best advise is learn what you can and feel you need and then get on with life.

[Ernest2]

Hi PaulaMarie,

First a very warm welcome to HU, and very sorry to hear you have CLL/SLL.

If you have any blood test results you would care to share, and any other tests, that would be interesting. Also if you have several sets it is interesting to see how/if things are changing. Guess in your case it is slow as your next appointment is some time away.

We have another Paula on HU who has written three really good posts of things to think about (for all of us). Here is a link to the last one which provides links at the end to the first two. Lots to think about so don't worry/try to take it all in in one go:

healthunlocked.com/cllsuppo...?

Also if you are in the UK do have a think about joining the CLLSA. I see Myrddin has sent you a link.

P.S. Apologies to be brief, but I'm on a tablet just right now, and need more practice on typing on that.

P.P.S. I think that even after being diagnosed for about 5 years I'm more than a bit ignorant about CLL. Fortunately there are lots of others here who have really good expertise, so please ask whatever questions are on your mind. Usually there are lots of us with the same questions, and lots of resulting discussion to help answer.

Best Regards,

Ernest

[AussieNeil Partner Administrator in reply to Ernest2]

"but I'm on a tablet just right now," and here's me wondering what new medication they've got you Ernest, on that is affecting your typing? But when you consider you can get an electronic tablet for less than one very small Ibrutinib tablet, then perhaps we'll see tablets as 'give aways' with bottles of tablets. Must be time for me to go to bed...

[Ernest2 in reply to AussieNeil]

Hi Neil,

My android tablet problem is usually when I press the send/post button, and it doesn't. However have finally learned to cut/paste in order not to lose my work. Yes I have been more interested in reading HU than learning how to use a tablet well. I just spend too long on desktops (work).

Also it usually means I'm not at home and the internet connection may not be the best. At home in the evening my good lady wife is probably using the tablet for some well deserved rest, to get over looking after me during treatment.

However I have to admit I'm very happily in the treatment room just at the moment and the rituximab is now running (big relief).

P.S. Any tips on getting more fluent on tablets would be appreciated. It does do a very good job letting me enjoy reading HU over breakfast, before I have to start work.

Please make sure to get some sleep.

Best Regards,

Ernest.

[AussieNeil Partner Administrator in reply to Ernest2]

Good to hear you've made it to treatment at last Ernest.

Other than practice, I can't really suggest any tips for Android tablets other than to understand how to configure the device settings to suit your use and to look for apps that will meet your particular needs. I reckon tablets are great for use in hospital settings. Most importantly they are much easier to keep hygienic than a laptop as well as being light and not needing recharging as much. Typing can be a bit frustrating, particularly if you find yourself fighting the auto-correct and as you've found, sometimes getting the device to recognise taps can be a annoying.

Hope this treatment cycle goes smoothly and you don't strike any new wrinkles...

Neil

[paulamarie in reply to Ernest2]

Hi Ernest, thanks for your reply. Hope you are doing o.k! The reason i feel so ignorant i think, is because i have only been told i have cll/sll . I have no idea what my counts are. Have been unwell with high white cell counts for ten years now. Recurring shingles fatigue and headaches, dizziness and sore bones.Apart from that am fine hee hee. Once again thanks for your reply. Take care. x

[Ernest2 in reply to paulamarie]

Hi PaulaMarie,

Fine thanks. Got a canula in the right arm today for some red cells. Words fail me to properly thank those who donate blood.

Apologies first for discussing my tablet problems just here. Neil is right though, they are great in difficult situations.

For the CLL l would try to read what you can, and ask here on HU what does not make sense. Lots of others will have the same questions. There are also lots of people really good at explaining things.

Hopefully that way it enables you to ask good questions next time you see the specialist and learn enough to make the right decisions. As CLL/SLLers we are all a bit different so there isn't just yet a universal set of magic answers, so we all need to keep asking questions.

Fortunately for most of us the CLL is slow enough to give us some time to do some of that.

My father was a CLLer and did have shingles so I can understand that.

Positive thinking is one of the best medicines so keep hold of that.

Best wishes,

Ernest

[AussieNeil Partner Administrator]

Hello again PaulaMarie,

I would say that you are in a very early stage of CLL if you've only been asked to come back 7 months later. It is also a very good sign that there's been no talk of treatment. I started off having monthly blood tests after my diagnosis (stage IV) and that was 6 years ago and I'm still in watch and wait. To put your mind at greater rest, I'd try and get some idea how familiar your specialist is with CLL by asking how you'll be monitored and what to expect. You may well fall into that lucky group that never needs treatment.

Neil

[PaulaS Volunteer]

Hi PaulaMarie,

It’s nice to see another Paula on HU Welcome! I notice you are in sunny Sunbury on Thames. I’m in sunny Sheffield on the Sheaf

You say you haven’t spoken about your recent diagnosis yet. You also mentioned (in another post) that you’d be grateful for some pointers… So here’s a link to a post I wrote recently, with tips specially for the newly diagnosed.

Ernie has already given you the link to Part 3, but this is Part 2, which includes things to bear in mind when deciding who to share your diagnosis with.

healthunlocked.com/cllsuppo...

I was prompted to write those 3 posts, because I noticed when people are first diagnosed, they are not usually told about practical things that can do, to improve their CLL journey. And yet there ARE things we can do - things it’s good to be aware of. I’m not talking about the complex medical stuff, just simple, do-able stuff. I hope you find something helpful there.

Wishing you well,

Another Paula

[Seven6]

Diagnosed January 2014 and still very much learning about CLL and the processes.

I attend haematology 6 monthly at the moment but if things stay stable this may change to 12 monthly. At first there is so much to take in and I initially felt bewildered. I had never heard to CLL and had no knowledge or understanding of chronic leukaemia. I have found jotting down relevant things I would like to check out in a diary and before I go I pick out the most relevant to ask questions about. I have found this has improved our relationship and am feeling more comfortable, and able to have conversations. Each time now I ask for a print out of my bloods and my haematologists is happy to do this, and has explained some of the readings to help me understand.

You have lots of helpful information from others above. Maybe take your time to process these.

All the best.

Seven6