Why was I stronger DURING treatment than I am now?

Marijen, yes, Waldenstom's macroglobulinemia is a weird one. The first hurdle is learning how to pronounce a disease most doctors haven't heard of since med school if then. I found out I had it when I started getting cold induced hives. A very alert allergist confirmed her suspicions with some blood tests then sent me to a hematologist for a definitive diagnosis. That involved a bone marrow biopsy which isn't the most pleasant way to spend a half hour. In Waldenstrom's most of the malignant cells are in the bone marrow not the lymph nodes. I'm actually a member of the organization you linked to - the International Waldenstrom's Macroglobulinemia Foundation. I haven't yet been treated for WM. It tends to be an indolent disease and may sit and "smolder" for years before it does anything. So I am on "watch and wait" status. Or watch and worry as some of us call it. If I get symptoms that are problematic, then I'll need treatment and would consider a clinical trial. So it's not really been too much of a problem yet. Just another thing hanging over my head. I did have some bc micromets in a few lymph nodes, but that's unrelated to Waldenstrom's. The only possible relationship is that Waldenstrom's puts you at higher risk for other cancers.

there are way too many ignoramuses around where cancer is concerned. As for me I just saw a PTSD checklist on fb and realise I still have a lot of these symptoms, makes me tearful even typing that......seems relentless.......

I married an orphan but I think I would have liked his mom as I liked his aunt. Sincerely I want DIL to be happy because she makes my son happy. DIL has so many food restrictions trying to cook for her is out of the question, really. 24 years is a long time to put up with all that. Sorry to hear it

JJ, your MIL sounds like a piece of work. I hope she's not going to CR with you!

Lily55, I've read before that cancer patients can have a form of PTSD. I find it hard to relate to, because my father had PTSD from WWII. Back then, it wasn't recognized or treated, but I can't relate how I'm reacting to how he reacted. Weird, as I'm guessing there is a wide spectrum of PTSD reactions.

Marijen, I too married an orphan (his mother died before I met him). He had been cut off from his father, and it is his father's third wife who got them all back together. So I am very lucky and thankful for having her in the family. DH and I have been married 27 years now, and I don't know if I have JJ's patience!

Kicks I could have written your story, only he was 25. I wish she had been alive and he treated my mother with great respect, he even liked her. Never a bad word

Hi All,

Struggling with Christmas. My eldest has just arrived back from studying in London and has gone straight to his dad's. I know it is easier for him in so many ways and he will spend Xmas day and eve with me , but i find these  things unbearable at times. Thing is i find anyone being around too much after about 5 mins.... its too demanding.  

Also 2 letters this morning 1 for mammo  and the other to discuss next stage for recon within a day  of each other..... also seeing urologist  in Jan too and Coeliac consultant all in Jan!!

Is this what  being old is like?  Is this normal for a 54 year old? 

I wish i had a dog to walk for miles and miles or a river i could skate away on...

Any one else feel this way? 

Wintersocks I so get this......I felt like celebrating when I dropped one specialist from my repertoire of doctors visits.....but I still have Oncology, nephrology, vascular surgery, traumatology and gynaecology left!  Never the one I long for though, recon................it seems so trivial to be so upset about it when there are people here at stage 4 fighting for their lives...........but there is barely a month when I am not at the hospital...........

I don´t really feel like venting, I think most of you got how bleak I feel deep inside, and even though I have had one or two days when I felt a bit better this past week, underneath I have the same never ending sense of disconnectedness from the world.  For some reason PTSD things keep popping up on my timeline and I think this IS still a lot of my problem, not just originating from breast cáncer but from previous years of other medical issues that were life threatening at one point or another. I remember feeling how easy it would be to slip away when I had a lot of internal bleeding, I was so tired I just wanted to fade away, instead I was persuaded in to a blood transfusion.......but going then would have saved me a lot of pain and heartache. I am hyper sensitive to everything right now and even going downstairs to let the dogs in or out feels like an enormous hassle or challenge. My body has long been hyper sensitive to numerous drugs and even things like plasters, certain antiseptics so going anywhere medical is always an extra challenge........and in this country is often met with disbelief so they do things like use normal plaster then say two hours later oh you are very sensitive aren´t you, suppose we had better take it off.........stupid little things that just leave me feeling even more alone....................this all reads like a pity party but after 11 years of health challenges I feel worn out........and someone I made a phone support group with when first diagnosed is now Stage 4 and literally fighting for her life in hospital, same kind of cáncer as I had but lower stage, so I don´t feel I have a right to whinge when I have more choices than her.

BB - where are you spending Christmas?

2Tabbies...do you like your new look?? How are you feeling?

I'm trying to put my biopsy out of my mind. I also hate worrying about the fact that I go back to work on the 8th then I will be missing time to see my family Dr, then blood work, then the biopsy, then the MRI...my boss is going to freak. Not how I wanted to start the New Year...also being in Costa Rica the sun is beautiful but I'm on guard about getting sun on my chest...(always careful) but now even more so. My last stereotactic biopsy was the absolute worst. I can't wait for my DD to arrive. Her chatter and drama will drag my mind out of cancerland...

Hugs, Lily. Some days are more difficult than others. I know that feeling of PTSD. I have triggers that get me going down that path. Just know that you are not alone. Many of us are here for you. The holiday season gives many of us mixed feelings and can be a trigger too. I have started doing gentle yoga and is helping me mentally as well as physically. The instructor was telling us to be kind to ourselves. That was a relatively new idea to me. I always held the bar a little higher for myself than for others. I find I give myself permission to have down moments, or sometimes just sit and work though some thoughts. It does help. You have been there for others on this site. Be just as kind to yourself. Ask for help or support when you feel the need. It also helps me focus on the moment instead of the past or future. Things are alright in just this moment. Sending support and wishes. GypsyJo

THank you both, I am bored with myself feeling like this so reckon others must be.....but I will use that quote............xx

Lilly - I'm so sorry to read about your struggles. I've only just checked in and read a couple of pages so I have a lot more reading to do to find out whats going on - but I want you to know that I'm thinking about you. I understand the feeling of being disconnected from the world, so I know that what you're going through must be really crappy, and really challenging, and very very lonely. But - you are not beaten.

I always think that the stuff that we need to feel strong is somewhere inside of us if only we can figure out how to get it out. Not easy. And life has a giant combination lock, and it takes a lot of trial and error and ( and breakdowns) to figure stout, and release ourselves the painful grasp that prevents us from feeling joy, or even feeling anything at all. And it sucks to have to work this hard at something that should be easy. It just sucks. I hope it gets easier.

I love Purls quote. And I love the idea of being kind to yourself. I hope today is a better one. I'm thinking of you,

Janet

Tresjoli2, I'm so sorry to hear you were going at this on your own. My mother was incapable of helping because it wasn't in her nature. MIL was never touchy feely so was also out. I can say I had a bit of help from hubby as my kids were young, but many of us go at it alone :-(. I went from being type A to type B real quick. Almost 5 years later and some of the "chill" has stayed. People do show their real colors during this time.

JJ try this website - maybe you can learn something helpful

http://www.drdeannabrann.com/

Thanks Marijen...I looked at that link. After 24 yrs with MIL I will just do what my DH does and respect her...but unfortunately our relationship will never be what I had hoped it to be...

DD arrived today for the holidays...hoping to spend some quality time with her. :-) Tests, biopsies...will wait

Thinking of everyone on this journey. It will be three years since I finished chemo this weekend. Still had four surgeries after that and Herceptin for a year but my last surgery was last March and physically I am pretty much healed. Emotionally there is still a lot of fear and pain.

I had a glimpse this summer of what recovered might look like. I felt better than I had since diagnosis and stayed busy and my thinking wasn't fogged.

Sadly depression rolled back in this fall. I will get through it, I am taking anti depressants and will try to start therapy soon.

All of you help so much. The pain and suffering I am in now feels so isolating. I had a great support network but everyone thinks it is all over and I feel ashamed to tell anyone, except my DH that I am struggling again.

So thank you all for being here.

Much love and healing prayers to everyone.

Julieho