I have had CLL for a couple of years now. I am on watch and wait. I have posted on this sight before. I had reconstruction from my breast cancer a number of years ago. Both sides. It looks like one side may have ruptured. I have a fast tracked appointment on Friday. I am worried sick. I know I need to await the outcome but everything is going through my head. If I have to have them removed will my bloods be good enough to operate, do I have them replaced or just try to cope with how I will look. I know my health comes first but will my husband freak out if the scars look horrible. I am also having treatment for skin cancer at the moment, hopefully that has worked. I am also having breathing problems, my lungs are showing blunting. It just seem all too much to cope with right now and I can’t worry my children so I’m using you guys as a sounding board and someone to talk to.
21Bedlam21: I have had CLL for a couple of years... - CLL Support
21Bedlam21
I just wanted you to know that I'm so sorry for all the anxiety you understandly have right now, and in fact that you have to go through this at ALL.
I know how hard it is, when you desperately need answers and your mind is running with the worst scenarios, and you just want to be doing something, anything, to help the situation but you can't just yet. I've been there.
For me the not knowing anything for sure yet is definitely the worse part.
But Friday will come quickly, so hang on, (I know, easy for ME to say) and remember, right now distraction is your friend!
However, please be sure to bring up each one of your concerns with your doctors. I'm sure you don't need me to suggest this, but maybe use this time to write them all down so nothing is left unasked that you wish you had been able to ask.
Then once you begin to know some things for certain, and a plan begins to form, then maybe you can start to at least feel a bit more in control again. At least you might feel more proactive about it all, hopefully.
In the meantime, yes, use us as a sounding board and/or just people to talk to, because that's what we are here for. Please keep us updated as you can, if you want to. We Are Here.
Debbie
Thank you so much Debbie,
I’m trying to keep my head above water . My mind seems to be everywhere and forgetful. I am usually so positive and strong but this has floored me. I will pick myself up and carry on, I know I have to. So nice to have this group to talk to when you find it difficult to talk to those closest to you. Roll on Friday.
You've got this. Remember, you've gotten through 100% of what life has thrown at you so far, and you'll get through this, too. x
Thank you. I just need to get my positive head back on. X
I'm probably persona non grata in this thread, but I'll chance it. If your husband freaks out easily, he'll need more education ahead of time; that way his freak out is only part of the process of adjustment in your relationship.
After all, if his arm was torn off at work, you'd be a little uncomfortable coping at first, but that's what commitment is all about - "...for richer or poorer, in sickness and in health..."
Love, trust, and the desire to come through for the other especially in bad times. Husband's and wives have been doing it successfully for thousands of years! 🙂💐
I don’t think I’m giving him credit, he is still coming to terms with the CLL diagnosed followed by the skin cancer. So I have to give him space to take this in. He very much keeps everything close to his chest and is not good at communicating. Thank you.
My best wishes to both of you.
Much appreciated.
Oh, the poor lamb!
I'm so sorry for my attitude, but isn't it YOU having to go through all of this, but HE has to come to terms with it??!! Good grief! The words 'man up' come to mind! 🙄
Maybe this is why I'm still single! 😂
I am wishing you all the very best. YOU are the one in need of support here. (Btw, I had a double mastectomy without reconstruction in 2008, so I have empathy with your anxiety about scarring.) xx
Thank you for your support, yes I do feel sometimes we go through things without real support. I’m as bad , people ask how are you and I reply fine. So my fault. X
None of this is your fault, hon. x
Perhaps, if you took a moment to think about "man" up and wo-"man" up, you'd see it's a matter of hu-"man" up.
We all cope in different ways, whether it's grief, anxiety, sorrow, or the empathetic pain one feels when someone they love and build a relationship with is going to suffer and feel a little less themselves.
Of course, these are only our opinions aren't they, but why divide a couple facing a health set back and make it a zero sum game when we could support them both? 🥀
I agree, we all cope in different ways.
Thank you for sharing your opinion. Your feedback is important to us.
Everyone’s opinions, feedback is important. I agree with you. We are all different and cope in different ways in different situations.
I think Debbie’s advice is excellent. I’ve nothing to add, but wanted to send you best wishes and strength.
Thank you so much Mandy, I appreciate it. X
I’m not sure how old your children are but with all you are going through, it may be helpful to share with them and ask for some support.
My children are older but they went through the cancer thing with breast cancer, then more recently with CLL and skin cancer I just feel I don’t want to worry them yet until I know the full extent of what will need to be done. I’m sure I would get the support. Thank you for your thoughts.
I'm sorry you are going through all this. What does it mean that your "lungs are blunting?" I've never heard that terminology before.
Neither have I. It’s affecting my breathing. Having another visit to a respiratory doctor.
I’m so sorry you’re going through so much. I’m glad you have your appointment with the respiratory doctor. They need to get to the bottom of the breathing issue.
I understand you want to protect your children, it would be nice to have their support at this critical time. Sending prayers and hugs 🙏🤗🙏🤗
I tend to put all the aches and pains down to CLL and it isn’t always the case. Roll on Friday. Thank you for your support.
Hang in there, 21Bedlam21: Friday is close, and things will sort out with a plan. I am glad you are having your breathing evaluated.
Just another thought, but various coping styles may work OK when things are going well. When illness or loss of any kind intervenes, that is an important time for sharing feelings and providing support for each other. Perhaps once the medical issues are sorted out, you and your husband may benefit from professional counseling to help address concerns about communication with each other and the anxiety it causes.
Thank you. Yes we are going to have counselling in the near future. I put it off for a bit because of so many hospital appointments. I also am have a relaxation class provided by a cancer group.
Sorry to be harsh but did you have the ‘in sickness and in health’ vows in your dedication to each other? Maybe you need to remind him? I reckon this would encompass accepting your partner ‘sans a breast’ ?
Some people cope better with things in life than others.
Yup that's a lot to deal with ..I hope it all goes favorably..I doubt your husband will care about any scarring ..he'll just be happy for you to get past this ..
Thank you.
gosh you poor thing having to cope with so many diagnoses as well as this! The good thing about the nhs is that you are entitled to reconstruction after breast cancer, as you know. I am sure they will really look after you x
I’m not surprised this feels like the last straw!
The person you see will be able to give you all the details you are worrying about.
It’s very hard to see the person you love going through this. He sounds as if he’s in shock, like you, that you have so much to deal with.
At the moment everything is going round your head, and, not knowing feels unbearable. Wishing you lots of love for tomorrow xxx
Thank you
I refused Chemo 2 months ago and I am trying the natural path 
Question about Sll/CLL
finally.....
Cll symptoms
