I'm tired

[latebraker]

I want to keep going.

My children at home are 13 and 14. My adult kids are 20 & 22.

My wife has no empathy. I never mention my CLL because of this.

I am suffering.

I am alone in this fight.

[ChattahoocheeBoy]

Although still on W & W, I empathize with your situation and one apparent solution is to have a meeting with all your children and wife and with your doctor to explain the importance of family support! Perhaps ask your doctor first and have him request meeting which might show the importance of attending this meeting. Hope it helps!

[BigfootT]

Late breaker, Sorry to hear this. I think @ChattahooceeBoy offered some good advice. My wife was in denial until she met the CLL specialist.

May I ask where you are in the treatment journey?

Bigfoot

[MisfitK]

If you edit your post and lock its view to this community, you will get more personal responses.

As is, I agree with the other poster...if your family does not all know about your diagnosis and needs, please tell them. Add close friends to that list, and let them all know you're struggling.

And continue to post here, day or night. As a worldwide board, someone is probably always awake and ready to listen.

[HopeME]

Hi Latebraker:

I’d consider joining a CLL support group. These groups are often found at large teaching hospitals and will almost certainly have patients who are experiencing problems similar to those you are facing. In my opinion it is important for you to build support and gain confidence prior to calling a meeting with your family to explain the difficulties CLL is causing you. Since there are often no outward signs of CLL and a patient does not receive treatment during the watch and wait phase it can be difficult for family to show empathy since they can’t “see” the impact of CLL. What you are experiencing is common and I think you will benefit immensely by being able to talk about this issue with others who face the same challenges.

Finally, I’d suggest you fill out your patient profile on HU so other members have a general sense of where you are geographically; how long you’ve had the disease; what treatments, if any, you’ve had; and a general sense of your age, etc. Having this information enables HU members to offer specific suggestions and advice to address the problems you face.

Good luck. You’re not alone.

Mark

[cjc1]

I am so sorry you feel alone in this. I do think you need to have an honest conversation with your family but I would break it up: talk with your older kids separately from the younger ones. You could really alarm the younger ones depending on how you phrase your take on CLL. The older ones and your wife can get a more thorough version but I would absolutely let them know that while you might look healthy and it seems like business as usual, there are considerations that they should acknowledge. Fatigue, anxiety, any other side effects that you experience. I would let them know that feeling like you have support would make a world of difference to you. I also agree that if you have friends who you can also discuss this with, it will be a real help. Wishing you all the best. We're in this together!

[emhicks00]

It's truly heart-wrenching to hear about your struggles. I want you to know that you're not alone in this journey. Many of us in this group have faced similar challenges with our own diagnoses, and it's important to connect with those who understand what you're going through.

The feelings of isolation can be overwhelming, especially when support from family feels lacking. It’s commendable that you’re considering opening up to your family about your diagnosis. This can be a significant step towards creating a supportive environment. As others have mentioned, having a meeting with your doctor present can help convey the seriousness of your situation and the importance of family support.

Don't hesitate to lean on this community. We’re here to listen and share experiences, whether it’s day or night. Connecting with others who are dealing with similar issues can provide comfort and understanding. Consider engaging within our support group, as it can be a valuable resource for sharing and receiving advice.

Remember, it’s okay to express your feelings and needs. You deserve support, and reaching out is a brave step. Keep sharing your journey here; we’re all in this together, and we can help lift each other up.

[Ellieoak]

CLL SOCIETY. Org. Is a great place to start. They can help you deal with this disease. I was diagnosed 23 yrs ago been through 6 treatments and I’m still going. You are going to be fine. The best way is to take your wife, brothers and sisters with you to your doctors office. Then explain to your friends what you are going through. That gives you an excellent job in educating them.

[Exerciselover]

I guess I have a bit of a different slant on this. Your wife's life is being affected by your diagnosis and your lack of energy. She could be scared and in denial. It's an adjustment for both of you. Have you told her what you can and cannot do now? Or told her that you need to be resting in the evening, for instance? Is there some family member that can help with chores you can't do? Just saying you are tired may not be as helpful as telling her specifically you can't mow the lawn, etc. Maybe she will understand the level of your fatigue better. As for telling your children, we have 3 adult children. I told each of them about my CLL in a different way, as each has a different ability to handle my cancer. I only discuss it now if one of them brings it up.

[Roseneath69]

morning latebreaker,

Sorry to hear you are feeling these responses. I agree with the others views. Nobody really truly gets this condition we live with it doesn’t just go away.

I think it’s mostly people tend to also think ‘ business as usual’ which is what we all want deep down but may become frustrated as we can’t deliver in the way in which we used to. Hense we feel low, lack confidence and self esteem. When we are actually some of the strongest people I know , being able to live daily with this condition knowing what we have will never go away. It’s in our blood forever.

I was diagnosed in 2017 and have had one round of chemotherapy treatments in 2020 and now face next year my 2 nd line of treatment as we all know we are reset for a period of time then it’s time to go again.

I get from family too ‘ oh I’m tired too’ be we all know their fatigue is not our fatigue! I love alone so no family at home to help and work full time. I’ve learned to sleep and not feel guilty till subsides…. Sometimes it can be a whole weekend, people will never get it. Understandably you have a young family at home so your circumstances are different tho mine still put their demands on me too.

Please remember that You are not alone you are STRONGER than you think ! Keep going, talk to people and don’t feel that you can’t do this , you can! All the people on here know exactly how you feel.

Take care my friend and have a good zNew Year 🙏X

[Nucleusman]

on the right medication enjoy a normal life. I have a wife like yours she probably thinks i’m you are a malingerer ignore her. enjoy every day there are are far far worse illnesses to have and of all the leukaemias this is the best one to have

[Notmuchenergy]

unfortunately because we are not receiving any active treatment, the vast majority of relatives and friends and people in general, incorrectly think that we are just a bit tired, feeling well and have no issues. The reverse is certainly true in my case

Can you talk to your wife and explain how frightening it feels and how you worry about her and the family as well as yourself and maybe have a better discussion ?.My husband acted as though he wasn’t bothered and years later a neighbour told me how worried he’d been talking to her.

Could you ask your doctor to get you some counselling so you could talk to someone who will let you say everything you need to say ? I hope you can reach out and get some help

[Hazel33]

I agree with the replies you have received.

Your wife’s lack of empathy is probably the way she is dealing with the situation. She probably cares very much but is also very scared for you and for herself and family. Personally, Having had CLL now for 13 years, I would rather not have anyone sympathising with me and just rather be told stop dwelling on it, and get on with your life. We are all different.

Best wishes and seasonal greetings

[Milla15]

You've been on this forum since 2018, but this is your first post. I'm taking this as a heartfelt cry for help. Please don't think you are ever alone, there will always be someone here who gets it, and feels for you. Don't be afraid to come here and share your feelings, your loneliness and your frustrations, this is largely (to me) the way that this forum is helpful, as well as to share knowledge and information. If you are tired, please rest. Be sure of our support.

Sending enormous hugs xx

[J1015]

I am at the tail end of a week of celebrating Christmas with my two adult children, their spouses and my three young grandchildren. I also drove over 700 miles round trip over the weekend to attend a bowl game. I love my family dearly but I am exhausted and ready to head home. I keep up the appearance of having enough energy for the cooking, cleaning and play time and it’s so hard mentally and physically. I hope you are able to get them to understand how you feel. It’s extra hard when you don’t look sick. Wishing you the best.

[GumboKing]

I am so very sorry for your situation. Is there no one you can talk too about this? A friend maybe. Talking to someone else might result in some suggestions that will be helpful.

My best to you.

Paul

[loveRicky]

I am so sorry you are going through these issues. I truly understand. I lost my husband at age 62 after a long, hard fight to cancer. Two years after he passed, I was diagnosed with blood cancer (Waldenstroms), presently have CLL. It is just me and my best little buddy, my cat, Ricky. I think most of the suggestions you received from the CLL group are the best....your family needs to be educated about CLL and what your symptoms/changes that might occur. Hopefully, this will create a "team," which will help you fight the fight with the support you need. You will be in my thoughts and prayers.

[ChattahoocheeBoy in reply to loveRicky]

I empathize with you concerning having had a ‘good life’ and acknowledging when enough is enough……comparing my 54 years with my life love and the adventures we’ve shared when thinking of the limited chances others may not get to enjoy! Hope this group helps you communicate your feelings to people who understand! Best wishes to you!

[loveRicky in reply to ChattahoocheeBoy]

Thank you so much! My husband, Tom, was the BEST thing that ever happened to me! I know for sure he fought to stay with me as long as he could. He had hospice and was home for his final days (his wish). The hospice nurse came in on Wednesday morning and told me she didn't think Tom would make the entire day because his skin was starting to molt...explaining to me that our blood goes to our vital organs when we are dying. He hadn't sat up for over 2 weeks and was in diapers. Wednesday evening, he had no pulse and was not breathing. The oxygen was disconnected. Now for the amazing part.....after 35 minutes, he SAT UP in bed, looked at me and said, "Hi Peaches!" Peaches was my nickname. I jumped in that tiny hospice bed and did NOT get out until Friday morning at 8:05 AM, when the love of my life went to heaven. I had been awake...stroking his hair and touching his face...telling him how much I loved him, when the sun shone through the window and was shining directly on both of us when he passed. If dying could be beautiful, it was! Always remember, hearing is the last thing to go. I was truly blessed to have that "extra" time with him. I so wish he were physically here with me to help me go thru my journey. I know he is ALWAYS with me, but I can't see him or touch him. I still feel tremendously blessed that I met the man of my dreams and had a love I could never have imagined....truly a gift! Thank you for caring...something this current world needs to do more of. 😍

[ChattahoocheeBoy in reply to loveRicky]

So lovingly and beautifully written with the love you shared pouring from you! Always feel free to express yourself to your online family who cares….many good wishes!

[KMac1969]

This is a terrible post to read. You are NOT alone. The responses you have gotten (Have doctor explain situation to your family) are sound advice. You can explain your situation to the doctor and maybe do a teleconference or video conference. I am always available to chit chat. My prayers are with you.

Also, complete your profile and share with this forum/community only. It will get more responses.

[skipro]

It's heart breaking to hear of your plight. It's so not right. My therapist told me a few times that's it's easier to be angry than sad for a spouse with a disease like ours.

And I relate, my wife has been cruel as opposed to neutral or supportive.

It's heartbreaking and now that I'm off treatment for the second time and feeling better, I'm working with an attorney on divorce. Something I haven't been able to wrap my head around but I can't endure her cruelty.

But unlike you all my kids are adults.

My faith has gotten me through.

God bless and good luck

Skipro

[Palmetto in reply to skipro]

Doc I am so very sorry to hear this. You have been such a source of good here. I wish you the best. She does not deserve you!!

[skipro in reply to Palmetto]

Awe thank you.

[Spark_Plug]

You could ask her when she is calm and not in the middle of something (especially emotional), "Why do I feel that maybe you don't understand why I'm taking this so seriously"?

That way you are stating your feelings, not implying nor attributing about her. You are giving her face, it is simpler to accept that someone didn't understand your feelings rather than didn't understand the situation. Have you a history of being overly fretful, like me? It's hard to live down a perception you've helped create. Whatever her reply, thank her for her input tell her it's important to you to hear other peoples feelings about the matter. Should she confirm your suspicions about being without empathy, don't mention it! Reply, with a gentle, " I'm sorry perhaps this is not the time". Be ready to listen when it is the time.

latebraker, I'm not telling you like I have it solved, I've been at it for about 7 years, I just wish I didn't start 28 years too late. But, it does grow. ✌️🙂

[skipro in reply to Spark_Plug]

Thank you,

Those are all very great suggestions, exactly what my therapist has been teaching me for the past 4 1/2 years. I've practiced and changed so much and with each improvement, comes another new thing she despises.

I think she is very angry about some other things and takes it all out on me. Either that or she just plain hates me.

Thanks so much.