Falling apart mentally & physically, hate this disease, no energy..can't do the things I use to do

[Ladydi49]

Abdominal CT scan results in, Lump on the left side of my abdomen, total meltdown crying uncontrollably yesterday during 4th ivig infusion, Mycobacterium Avium complex lung bases...going to pulmonologist tomorrow...spleen 11.9 centimeters by 17.3 centimeters. Depressed, worried and scared...hubby not very supportive

[fell]

Hi ladydi49,

This disease can make even the strongest among us feel sad and not very hopeful. Have you considered speaking with a therapist? It might help your anxiety and perhaps get you to a better place. You are not alone - we all have felt what you are feeling at one time or another. Wishing you positive thoughts 🙏

[Ladydi49 in reply to fell]

Thank you fell. I was going to go to a conference this Saturday at Moffitt Cancer Center in Tampa where my hematologist is. The speaker is going to be talking about the new and probably some of the current drugs but I am trying to avoid crowds with all the flu that is going around. I did email the moderator to see if there will be a way to access the presentation on line. I will post if I hear anything

[Hidden in reply to Ladydi49]

Can't blame you for avoiding crowds. I've been doing that too. Only grocery shop when I have to, and of course Dr. visits. And when I go for blood draws the offices are full of people coughing and hacking. I think most of my other illnesses come from doctors' offices!

[DanaNicholson in reply to Ladydi49]

Hello ladydi49, do you feel any better after the meltdown? I wondered if I wud feel better if I let myself have one. Tell you what. I'll wait till after my satscan results, and when I do, I'll think of you. The energy it is taking to restrain myself from wallowing may not be worth it if there is relief afterwards???

[MsLockYourPosts Passed Volunteer in reply to DanaNicholson]

Dana - a good meltdown can be very therapeutic - like letting the build up of steam out of a boiling kettle. Find a way to let your feelings out, whether it's a meltdown or two or finding someone (support group or therapist and/or this group) who you can talk to. Keeping everything bottled up inside is not healthy.

[DanaNicholson in reply to MsLockYourPosts]

Thank you. I am bottling it. I need to find release maybe big exercise. I'm so new in the game I hope I'm not deceiving myself that I can fix this with diet and exercise. And I'll be damned if the neuropathy on the tops of my feet, the very symptom that sent me to the doctor in the first place, is going away.

Speaking of locking our posts, are we closed from the public here?

Dana

[MsLockYourPosts Passed Volunteer in reply to DanaNicholson]

Dana - At the bottom when you post there is an option to restrict to community only. Unfortunately the default is Everyone, which means you could find your post (and all replies) on google, or just about anywhere. When you restrict your post a little lock will appear when you click on the title. The original poster controls the privacy setting for everyone, so if you don't see a little lock, you might want to be careful about putting personal or identifying information in your reply. Posts can be edited to restrict them - click on the v, then edit, then change the setting at the bottom to community.

It appears that you have used your real name. You might want to change that to something that wouldn't identify you.

[Corkyrissa in reply to MsLockYourPosts]

Would you please walk me through how to make sure my posts are restricted. I click on reply ans don't see any options

[MsLockYourPosts Passed Volunteer in reply to Corkyrissa]

Only the original post can be restricted by the poster (at the bottom of the post change everyone to community or if the post is already up click the v next to more, edit, then at the bottom of the post click on cummunity). Replies to posts are controlled by the original post and can't be locked - see the little lock next to the title of the original post - which is why many of us don't reply to Unlocked posts or only give very general answers.

If you have a reply that you don't want those outside the group to see you can click the v then delete.

[Ladydi49 in reply to MsLockYourPosts]

Is it that little v thing next to the word more?

[DanaNicholson in reply to Ladydi49]

Hi ladydi, how did yr appointment go today. I said id check in with you. You were worried about an infection and I hoped they could sort out an infection with antibiotics, and your wbc woukd go down

[Mystic75]

Hi Ladydi49,

You are doing the right thing in reaching out and am glad you reached out on the forum. Husbands are a funny thing sometimes (sorry guys)...I know mine isn't comfortable in getting too emotional and sometimes they just don't know what to do...it's not that they don't care. Please continue to reach out, which is so important. Finding someone you can trust to talk to, as recommended by Fell, is a great suggestion. You have a lot on your plate and sharing it with someone will help - it's too much to handle on your own (for any of us actually). What you're feeling is a normal reaction and having someone to talk to can help. Not sure what options you have in your area but a therapist related to health issues could be a big help.

Hang in there....we know what you're going through.

Take care,

Diane

[Ladydi49 in reply to Mystic75]

Thank you so much Mystic75. Some days I'm fine then other days I'm a blubbery crying mess.

[Mystic75 in reply to Ladydi49]

Same here and it is my husband who has the CLL (sorry - I haven't introduced myself yet on the website!)

Actually I've been thinking A LOT lately of the emotional roller coaster ride this disease takes us on - it's really part of having the disease or when someone you love has it. Just remember, your feelings are absolutely valid and sometimes you just feel like crying about it.

Please keep posting so we know how you're doing!

Big hug,

Diane

[cook4650 in reply to Mystic75]

Ditto all of the above regarding therapists. And BTW, they will also talk to your husband if you want. We did that and it helped. Guys are just.....different. And I know from my own husband that they tend to feel helpless so they don't know what else to do. Guys want (and need!) to "fix" things. When they can't do that, they just sort of shift into neutral and hope for the best. They are SO not like us!

[CHERIE56]

Sending you a big hug, I am sure you will get all the help and support on this site. keep reading it. x

[Ladydi49]

Thank you so much Cherie56. I am so glad I found this group. Everybody has been so supportive

Best Regards,

Dianne

[elizdonohoe]

I sympathise and understand how you feel. Since I started treatment two weeks ago (Bendamustine and Rituximab) I suffered severe weakness and nausea and now seem to have spiralled into depression with frequent emotional upheavel. Although my husband is reasonably supportive he works long days. What I feel adds to the isolation is so called 'friends' who have not proved at all supportive and are more focussed on their own social lives and having a good time with seemingly no consideration or time to spare as I'm obviously not able to be sociable at present. The result is that I now spend long days alone at home as simply no energy or inclination to socialise.

Please remember you are not alone. You may benefit from counselling as I find that often helps just to offload your feelings. Somehow it eases the pressure from keeping our feelings bottled up by being able to articulate them. I really hope you feel better soon - I find it also helps being able to post on here. All best wishes x

[Ladydi49 in reply to elizdonohoe]

Thank you so much elizdonohoe. Best wishes re your treatment regime. Hopefully you will be able to tolerate it with no side effects. Keep us posted,

Best Regards,

Dianne

[MsLockYourPosts Passed Volunteer]

There is an in person support group labeled Central Florida (Tampa) on the cllsociety.org web site. On the top of the home page there is a link to specific groups that will get you to information about that group. It might be worth checking out. I find that connecting in person with fellow patients and caregivers is very helpful, and a group like this would understand staying away if you are sick.

[Ladydi49 in reply to MsLockYourPosts]

Thanks I will check it out!

[Hidden in reply to MsLockYourPosts]

That's a wonderful idea!

[Beattiem-UK]

Hi Ladydi49

We can feel so alone with this. I have to confess (please don't judge me on this) that when a friend with breast cancer was getting involved with all sorts of events and sports and love-ins for women with breast cancer I felt envious. CLL is a cancer you feel so alone with. People either don't know that you have it, or they know and tell you how well you look when it's the last thing you are feeling.

And when the emotions come tumbling out the men in our lives don't know how to help us. They are proud of us when we are being strong but they get scared when we get emotional because they've never learnt how to handle it. It doesn't mean that they don't care about us. It's tough for them too. As someone else has said, if you can find someone else to share the emotional turmoil with it might help enormously. Failing that, and in addition to that, the forum is here and we are real people who are on the journey with you all the way.

Bless

Beattie

[Ladydi49 in reply to Beattiem-UK]

Thanks Beattiem....my cousin is just about done with chemo for aggressive middle stage breast cancer then she gets an mri and if no cancer then it's surgery and reconstruction and she'll be done and hopefully will stay in remission for years to come without having to take any meds whereas if I have to start treatment for this disease I will have to take a medication for the rest of my life according to my hematologist so I worry about costs and side effects.

Best Regards,

Dianne

[MsLockYourPosts Passed Volunteer in reply to Ladydi49]

Many of the trials now are looking at what happens if someone has a very good response to the oral drugs and goes off them - will they relapse, if so what is an average time before relapse, can they go back on the same treatment or would it be more effective for them to move to a different treatment, so you would not necessarily be taking the drug for the rest of your life. And, taking a daily pill for CLL isn't any different from taking a daily pill for a thyroid condition, heart condition, taking a multivitamin, etc. except that we have CLL in the back of our heads when taking it.

Most breast cancer patients, depending on markers and pathology, do take a daily pill after treatment / surgery - it was for five years - now more doctors are saying ten. My sister in law had a hard time with that because it reminded her daily of the cancer. It's hard to not think that the grass is greener with solid tumor cancers, but it isn't. Surgery may remove the tumor, but you end up, just the same, dealing with watch and worry. Either way depressed, worried, and scared is not abnormal.

A few meltdowns can be a great emotional release, as long as you don't stay in that mode. I hope you will be able to connect with one, or both of the CLL support groups. If both are within reach you might find that each meets different needs, that if your husband will go one is a better match for the two of you and it helps you to go to the other alone so that you feel free to discuss all of your frustrations, or simply that one is a better match for you.

Let us know what the pulmanologist had to say. I hope today is a better day.

[dandelup]

Just remember your not alone, we are all in this together, we all know what it’s like to suffer in our own ways with our own symptoms, so on the days when your at your lowest get on here and have a rant, you will always get a friendly reply and hopefully it will help lift your spirits. Good luck and stay strong.

[Ladydi49 in reply to dandelup]

Thank you dandelup and I will take your advice

Best Regards,

Dianne

[mgh348]

Hi, just to let you know if you are closer to Orlando, I facilitate a CLL Society support group and we would love to have you. Try to get your hubby to come to a support group meeting with you. He may gain some understanding and form relationships with the others. I have seen Dr. Pinilla's presentations, he is very good. Take comfort in knowing you are receiving care in a great facility. The weather has been lovely. Maybe you could sit outside when feeling down. I always feel better when going out into my little back yard. Best wishes, hope you feel better soon.

Maxine

[Hidden]

What do they plan to do about the lump on the left side of your abdomen? Will they biopsy or remove it? Could it be a swollen lymph node or a lipoma? Did any Dr. say what they thought it could be? I know it's a worry when nobody tells you anything, just leaves you with........it's a lump. I hate that.......I always want to know well, what can be done about it? Let's find out what it is, etc. I feel bad for you because I know exactly how you feel when you get a statement like that. And a non-supportive husband....well, mine is sometimes but it's been over 12 years since the NHL and then the CLL and treatments, etc. so sometimes I think he's just numb. Please don't give up!!! First thing is to find out what it is.

[Ladydi49 in reply to Hidden]

My spleen is enlarged...Measures 11.9 centimeters x 17.3 centimeters so it could be causing the descending colon to bulge out

[Hidden in reply to Ladydi49]

I'm hoping that's all it is and that when your blood work improves from treatment your spleen will go back down to it's right size. I know mine did in just a few months on Imbruvica, and ditto my liver which was also really enlarged as well. Good luck!

[Big_Dee]

Good Morning Ladydi49

Welcome, welcome. After reading some of the comments from CLL group, I wanted to chime in. I repeat it is not a death sentence. I have been blessed with relatively good health most of my life. I once sat down to figure out how many people must be sick with something when you are bombarded with statistics, 1 in 10 has this, 1 in 100 has, you wonder if everyone is sick or handicapped. I think the other forum members suggestion that you seek a therapist is good, because you have to convince someone else that you are as bad off as you think you are. The best and cheapest therapy is this forum because you will receive loads of support as well as information. You have to help your help your family through this and by doing so, help yourself. May God bless you, remember you are NOT alone.

[Corkyrissa]

I'm sorry you are feeling like this. I know the feeling. Dx in 2010 and I'm on imbruvica. Feeling fantastic

Please speak to a therapist you will feel better. This site has been very helpful for me.

Your husband is probably going thru his own fears about your cll. He might need to speak to someone ,too. We all face health issues differently. Bring your concerns to your Dr . He may be able to help.

Wishing you well. ❤️🙏🏻🙏🏻

[Carol_Walker_AZ]

Hello Lady 49. I completely understand how you are feeling. I had terrible nightmares. I also had meltdowns. Then I was in a very dark place planning my final arrangement and how to end it all. I went to a counselor. He got me through the rough patch. I now take trazadone to help me sleep.

My husband was as supporting as he could be, or should I say as I would let him. Along with friends and family.

With the right support of your Dr. you will find strength and education. I had to relocate to find a Dr that I felt comfortable with and my insurance would cover. It has been two years. I am still on wait and watch. Most days I do not even think about it anymore.

Good luck. Reach out to supporting friends, family,and websites.

Go ahead and scream, cry have a meltdown.....get it out of your system. We are all here for you.

[gp7591]

Ladydi49- I'm very saddened to hear of your anguish and want to try and help. Don't let fear overwhelm you. Fear is the most destructive emotion- it can paralyze us, even cause our health to deteriorate. Fear and high stress have been shown to be detrimental to overall health and can even exacerbate some conditions. When you feel scared and helpless, take a deep breath and try to relax. Get up and go outside for a walk. Get some fresh air. Physical activity, new surroundings and even a leisurely walk in familiar surroundings can be very peaceful and helpful. Take a coffee/tea break. When you feel fear creeping up on you, say "STOP!! GO AWAY!!", forcing the fear out of your body, releasing your anxiety and allowing you to regain a sense of calm. Remember- CLL is now treated very effectively by a wide range of highly effective new drugs which have demonstrated excellent results. The "combo" trials with drugs like Ibrutinib and Venetoclax are showing excellent results. Dr. Keating at MD Anderson in Houston is now working on a CLL vaccine- yes, a vaccine- which appears highly promising (I know this because I have a friend under his care). There are many reasons to be very optimistic about CLL and its treatment- and shall we pray- eventual cure someday not too far down the road. I shared this with you because I promised myself to "pay it forward" with whatever knowledge I have gained, so as to help others. I hope this helps you. Shake off the fear. Make it an unwanted visitor who never gets inside your front door. Stay strong. Wishing you the best! -G

[G1llHa1n]

So sorry to hear you're struggling at the moment. A person-centred, talking therapist could be very helpful - just make sure they are/or get up to date on current information about CLL.

In the meanwhile treat yourself gently and kindly - favourite music, favourite comedy films, the slightly luxurious coffee or hot choc - marshmallows on top, etc. or whatever does it for you but remember this too shall pass. You are human and get weary of it all at times - and if you tend to winter blues this would be the time of year for it as well.

Hope you start to feel better soon.

[BeckyLUSA]

Sorry you are going through this right now, especially the part about your husband. Mine is extremely supportive most of the time, but then once in a while he is not. I have found that during these periods that he is feeling frustrated because he cannot do anything “concrete” or “manly” to fix this. Most men feel the need to do things where they can see results! Supporting their spouses is not always something where they can “see” these results. Here’s hoping time and familiarity with what’s going on will help.

BeckyL. USA