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CLL Support Association
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Don’t suffer alone in silence

As a man and as a doctor I’m more used to attempting to “fix” other people. Since being diagnosed a year ago I’ve realized that these days it’s me who needs fixing.

I know some people suffer in silence and feel alone. This group goes some way to alleviate that.

But I urge you, consider reaching out to a helpline, or get a CLL buddy, join a support group, and take the support help and advice on offer.

I’m not ashamed to say I hugely benefit from the support on offer. I will never forget the calming support that I got when I rung the CLLSA helpline immediately after diagnosis.

And then yesterday evening i called the Leukaemia Care helpline and talked to a marvelous haematology nurse about my recent issues. Found them incredibly helpful, and the conversation was so useful and reassuring and gave me so pointers for what to do.

Don’t suffer in silence alone.

Call a helpline.

Get a buddy.

And if, like me, you are suffering with fatigue come to the fatigue day in Oxford on the 16th June leukaemiacare.org.uk/suppor...

NB sorry I forgot to mention this is an UNlocked post so any replies can be indexed by google. Thanks for MsLockyour posts for reminding us in a comment.

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Post Unlocked. Don't reply with stories you don't want to have read on Google, etc.

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Oops. Sorry forgot to mention that. Thanks for doing so. I do think it’s a good habit for us to get into to mention if a post is locked or unlocked in the original post.

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Thank you Adrian. This is great advice.

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Your screen name led me to you to ask this: when reading a post how do you know if it's locked or unlocked? I looked all around this page & saw no distinguishing factor that indicated which.

I did check out just now how you lock it, seeing when one writes that right before posting there's a choice of whether you want "Everybody" or "Only followers in my community" to see. Now, seeing the import of the privacy issue to many who responded to Adrian, I'd ask you or any administrator why is "Everybody" the default. Shouldn't the more private one be the default (then again maybe I chose "Everybody" as the default during an initial set-up phase??).

For me, I could care less who of the billions of earth's inhabitants see what I wrote (" yeah I got something, who doesn't ... join the club") so when I've written the choice given never even actually registers. Till now. Now I realize by allowing it to go out unlocked I may have been being insenstive to others, especially if they, like me, don't realize upon reading a post that it is unlocked.

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Gemit, HU have chosen to have the default box as ‘everyone’ because they naturally want to attract people to the site and it’s a commercial decision. The question has been asked and discussed at great length but that default position remains. It is the way many of our new members find us and we need to balance that need with protecting the privacy of existing members. It’s therefore important for people to be aware that when they post potentially delicate and identifiable information on a header post, it’s incumbent on them to restrict the post to the community. Members need to look for the little padlock on the header post they’re responding to and if it’s unrestricted, make a decision whether they still wish to respond because ‘open’ posts can be indexed by google and appear on the net.

Naturally, privacy is very important to people who are not widely disclosed or who wouldn’t choose to share intimate details with colleagues, friends, relatives or the neighbours!

Hope that explains the situations.

Regards,

Newdawn

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Thanks for the information.

My only suggestions would then be to 1) show an open padlock icon, even larger, right up top to make sure everyone is reminded of the type of post they DON'T want to participate in & 2) have the choice of 'everyone' vs. 'community' right up front as well, so that's the first thing a poster has to choose before starting to write rather than the last when you realize you spent too much time writing, are now late & just hit Post before rushing out.

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I’m afraid this is a general site feature the Admin have no control over gemit but we are forever reminding people and there’s an important pictorial message on the front page highlighting this issue.

Regards,

Newdawn

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Adrian

Your advice is spot on!

What is also interesting is that as a doctor you are now realising the experiences that cll patients go through and which many GP’s do not understand.

You mention fatigue whilst many GP’s dismiss this as a symptom.

I appreciate you already play a significant part on this excellent site and I am sure that you can do a great service by helping to educate your colleagues, as many of the expert patients here do.

I recently had a conversation with a newly qualified doctor at my surgery who was enthusiastic and open to learn. This was very refreshing as they asked numerous questions as they were not really up to date with cll or the treatments. It is appreciated that many GP’s don’t see cases of cll during their careers which is why we must continue to do our part in educating them either from the view of patients or in your case as a colleague.

Keep up the good work.

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That younger keen GP may turn out to be a good one for you to settle on as your regular GP. I’m finding my own younger GP to be fantastic at heading off the minor infections and other issues and Co ordinating my care.

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I wish I was offered this when I first realised CLL was going to effect me. But I just suffered for 2 months with heavy stress

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Good information. Curious as to why you choose to not lock your posts? Sally

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The general consensus is that it helps for some of the posts to be unlocked so that they can be found on google as that’s how many of us first find this forum. Obviously some people don’t want their personal health information broadcast so that’s why we are now trying to get in the habit of mentioning that the post is unlocked so people don’t inadvertently reveal something they don’t want to. For me I now live “out” as far as my CLL is concerned so a post like this really doesn’t need to be locked. (see wp.production.patheos.com/b... for my story as it is shared openly on my own website).

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Adrian, please be sensitive to the fact that whilst you may openly ‘live out’ your CLL and don’t require your posts to be locked, many of our members do and rely on the safety and privacy of locked posts to share intensely private matters (like this very subject). An unlocked post restricts their ability to reply in an uninhibited way and for many, this site is their only means or choice of support.

It’s always a tough balancing act trying to attract people who need us and protect the privacy of existing members but I honestly believe that for very personal matters such as this, posts should be locked.

I’m unable to share my experiences whilst it remains unrestricted and there are times the care and protection of members must take precedence over the need for wider and unguarded publicity.

Regards,

Newdawn

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Thank you Newdawn for speaking out for the many, many of us who wish to remain private to this community only. Something I do not normally do, I've replied to an unlocked post against my will but wanted to support your reply and

@jm954 reply also.

Sue

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So, if you have a place to share with people on the net, already, why is it important for you to not lock your posts here?

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Advantages of unlocked posts are exactly the same as their disadvantages. They get indexed by google. If someone goes into google and searches for something related to CLL they often find this site. That’s how I found it I think. Certainly it’s how many of us do. So it’s important that we continue to have some posts unlocked. Of course it’s also important that some posts are locked so people who don’t live “out” with their cll can discuss or indeed so we can talk about matters we don’t want google to index. Some like to lock all posts. Some would be happy if all posts were unlocked. The compromise sensible position is we lock sensitive posts. And don’t bother to lock posts that aren’t really private. And then we are now trying to remember to warn people if a particular post is unlocked. If all posts were locked this forum would become less popular with google over time and we’d get less new members....

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I wouldn’t be sane if I hadn’t found this site through google last fall. At that time my husband was having a failed FCR chemo after 4 years. His deletions are p53/17. He was offered hospice or Ibrutinib...we were frightened of Ibrutinib...but this site is what I got up and read all through the night giving us both hope.

Thank you all for being open at that time. We have had a miracle with many more on the horizon now with car-T

Thank you so much

Farrpottery

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Almost every regular contributor to this group locks their post to respect the privacy of the members of this site if they are inviting them to share their experiences.

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I wasn’t inviting them to share really in this one. Just giving a plug for taking support. I will definitely lock some of my posts. And I will try to make sure if I don’t lock I say so in the post. Hopefully that will keep everyone happy!

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Hi Adrian

I wondered whether you suffer fatigue due to treatment of if, like me, are on w and w and still get very fatigued?

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W and W. Fatigue there all the time. Can’t work. Can hardly walk. And gets worse if I have an infection or something else going on

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. Have to pace myself. Rarely feel well but am told it has nothing to do with cll? Depressing because makes me feel a fraud.

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It IS to do with CLL and whoever told you it wasn’t doesn’t understand CLL. Having said that you should get checked out for other causes of fatigue too eg infections etc.

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Im WW and go thru phases of what I call the CLL flu with intermittent fevers body aches fatigue so bad I am bed ridden a day or 2 and severe dizziness. And then a week later it's gone. So far it's happening every 2 to 3 mos. I never know ehen it pops up.

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As said by others, two ways of thinking about it. Indeed this is how many find this forum.However, although my CLL is out there for all, this is the one place that I can say how I’m really feeling and some days I need that. I wouldn’t want everyone knowing my worries and fears. For that reason I do lock my posts.

Peggy

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Please don’t stop locking if that makes you more comfortable!

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A good idea of yours I think to state that your post is unlocked. So easy to reply before checking. That way they can either choose not to reply or temper their reply accordingly to give less personal information.

Peggy

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Exactly and all the more relevant for those of us who use phones as on the phone it doesn’t seem to indicate if a post is locked or not. (Tho you can lock it easily when you create a new one)

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Me too. I have lost friends in the past due to talking about my cancer and at work they have a tendency to think you're not normal anymore and can't do a decent job.

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Such sound advice - look after yourself Adrian x

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Thank you for your 'don't suffer alone, post. I was diagnosed 4.5 years ago and only recently found this site. I have found it difficult trying to get help at my GP practice and find it interesting that even you have too.

Stay well, Clare

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I worked my way round the GPs and found one I clicked with. I am having a series of infections and rather then let them build up we try to manage them. I’ve had other symptoms too. And my GP acts as my central point and my sanity check for all my issues. I was struggling this week but didn’t even go to the GP cos she was on holiday!

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Hi Adrian , so sorry to hijack your post for this. I’ve been following this site for some months now. This is first time I’ve replied to a post because of unlocked /locked post on a phone. So have typed this in can’t see any symbol as to locking .

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Yes. I can’t see a locked or unlocked symbol either on my phone. It really makes me think we should state in the first post if it’s locked or not. Coz I bet I’m not the only one who only ever writes on the phone.

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The lock appears on both my iPhone and Android phone. Its not on the Newsfeed.. you must open the thread and look at the right of the line below the thread title on the first post on a thread... a grey lock appears on locked posts.

I agree it should be on the Newsfeed post listings, we are pushing for that change...

~chris

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Ty for sharing this. I feel so terribly alone, especially at my job. The fatigue sometimes is overwhelming and that alone increases depression.....

Yes I will be seeking counseling. Ty for your courage to speak up. I really needed this today.

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Locked symbol ppears on my i phone providing I go in through my web browser.I downloaded the app but didn’t get on with it as the lock symbol doesn’t show on that.

Peggy

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It is great to hear that you as a patient and physician acknowledge the fatigue. My GP dismissed mine as depression when no clear cut diagnosis found. Even my hematologist seemed dismissive about it. Since I was just recently diagnosed and on watch and wait, I often feel like a fraud. I look perfectly healthy. Thanks for your post.

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Problem is not every early cll patient has fatigue. Some definitely do. It is worth a thorough investigation looking for other causes including low grade infections vitamin deficiencies thyroid etc. But rest assured thousands of us also have fatigue.

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Thanks again. I do have thyroid issues and chronic kidney disease as well, but the fatigue I feel is even worse. I have had the thyroid and chronic kidney disease diagnosis for several years. I do see the doctor again next month and will have him check for vitamin deficiencies. My best to you.

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you are not a fraud. i'm sure most of us look perfectly healthy. i lost 20 lbs but it was a benefit to me and people say - WOW you look GREAT! and i think - man - if you only knew.... this takes some getting used to, having this thing. this is a great support network. you belong...

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I agree so much, would give anything for a CLL buddy. This site helps me so much but wish I had someone to just share with each other.

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I’m guessing from the time you wrote this you aren’t from the uk or id refer you to the official scheme. But if it would help to have a chat with me I’d be only too happy. I’m still waiting to pay it forward to someone who’s had the illness less time than me. Be warned tho my story isn’t that typical for a first year watch and wait so don’t be thinking my story will be yours. Most is much less eventful unless they need early treatment. I will private message my contact details in case you want to take me up on this. Spent most of the day asleep so not able to sleep right now lol

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You get the help you need the most when you help others ;)

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