tired and scared

Purppura

tired and scared

Purppura

I was diagnosed about a year ago. I was 38 then. My tumor was IDC 2.1 cm, grade II, Er+, Pr+, Herr-. I had lumpectomy and started FEC75 chemo after that. I had hideous side effects from chemo. Losing my hair and my eye lashes was nothing - but vomiting nonstop, having an 8 week diarrhea, anemia, neutropenia, eosinophilia, elevated liver enzymes and losing all my energy was just too much. I had to be hospitalized for several days after each round. I went through 5 rounds (the original plan was 6), and after that neither I nor my oncologist wanted to continue. My chemo experience was so bad that I refused to have any further treatment. So I have not had radiation. And I am not on Tamoxifen. After all that I wanted to have mastectomy, but I was told that I am not well-enough for such a big surgery. Because of all that, the recurrence risk for me is quite high. (I do not know how high exactly.) I have finally returned to work now (I am a professor), but I am still very weak.

I would like to know if there is anyone in a similar situation? Please do not judge me for saying no to further treatment. This is hard enough as it is. I am scared. I have two little kids (5 and 8). My aunt has breast stage IV breast cancer. It has spread to her liver, lungs, and brain. She is expected to live only few more weeks max.

I will have breast MRI in January. I will also have blood tests, because I still have anemia (too little red blood cells, no iron deficiency). Part of me would like to say no to all that, quit my work (that I love), and just stay in bed. I am so tired that after coming home from work I have no energy left. So my precious husband takes care of the kids and the house and cooking and well everything basically.

Sorry for being so negative. I am just tired. I have a wonderful husband and my kids are great. I just wish I had energy to really be with them and do things with them.

Moderators

Hi Purppura! Sorry for what brings you here, but we're glad you've found and joined our community. We hope that talking with others here helps you deal with such a tough situation...

As a suggestion, and until you get support from members here, you may want to ask/post your question under the Chemotherapy forum. It might bring you more "Chemo-related" responses from others going through similar treatment/situation.

We're here for you. Please keep us posted on how you're doing.

((HUGS))

The Mods

LittleFlower

purpppura, I will make this short as my previous post didn't make it! I worry you might be depressed. Have you sought help for this or considered this an option. You have every reason to feel tired and scared. I wish for you a plan for increased strength. Be good to yourself

Littleflower

Purppura

Mods and Littleflower - thanks for your replies!

 

I am not very depressed, but I am angry. I did see a psychiatrist and she discussed with me and asked me to take some tests. After that she concluded that I am a bit down and tired because I am so sick but that I am doing emotionally better than most would in my situation. I did and still do agree with her.

 

I am angry at my old oncologist. I still think that she let me down. When I lost all my energy, she did not run a single blod test. She actually just claimed that I was depressed. We even had an argument about that. I did not want to see her after that. I went to another medical doctor and after running some tests he sent me to see a hematologist.

Now I have a superb oncologist and a superb hematologist and they work together trying to help me. They are still puzzled with my anemia, but I will have more tests in early January. I feel good, because now someone I trust is trying to help me.

 

And luckily I have a great support team. My husband is the greatest and I have friends and colleagues that care about me and listen to me.

 

I am just so so so tired of being tired ;-). But well - thank you for being supportive. It is hard for me to write here because other people here are so brave and strong and I am ashamed of being just tired and angry. Thank you for making me feel that it is ok .

Purppura

wrenn

Purppura, i think what you are feeling is normal. My anger and anxiety regarding recurrence is way worse now a year after being cut off chemo. I wonder if it is worth getting out of bed some days just from feeling sick and tired and i don't have anemia.

I have triple neg with a sarcomatous metaplastic componenet making it very aggressive and only had one chemo infusion. I developed diverticulitis so chemo was stopped. Some days are ok but most days i have a stomach ache from fear. I am told by a naturopathic doctor that the timing is about right for such feelings. Before this i was still dealing with side effects and shock.

I think you have to go easy on yourself. This disease can be a nightmare. I attend a support group that helps. Being around people with cancer makes me feel not alone. We all get it.

I hope your anemia can be solved soon. I can't imagine dealing with all this with such fatigue. Keep venting. This site has great listeners

Hopeful82014

Purpurra - One of the many burdens of breast cancer is that we're supposed to be strong, to handle our diagnosis and treatment with grace, to look out for everyone else's feelings and make it easier for them, etc., etc. At least, that's the narrative we're handed. Anger is rarely acceptable in this narrative and those who express it are shut out of the circle and left to struggle on their own.

You'll see some of that here, but not as much as out in the world. I was terribly angry when I was diagnosed and this was about the only place I could safely explore that anger as well as the fear. From the sound of things, you have legitimate cause to be angry (not that that matters). Don't ever apologize for being tired of being angry, sick and tired.

I know how hard academic positions are to achieve and retain. I sincerely hope this illness and the incompetent and debilitating treatment you've experienced will not deprive you of work you love. Hang in there, build your strength back up, and seek creative approaches that might help you detour around the road blocks to effective treatment. Now that you've got a good team, you're probably further on the road to wellness than you realize. Good luck with the anemia and all the rest of it. Take care.

april25

If you like your medical team now, hopefully they will find something to help you! It sounds like they are trying to help, at least, instead of ignoring your concerns.

If you are not feeling well, it is natural for you to feel angry and sad.

I hope you will feel strong enough to get your surgery soon. And I hope your doctors can find a way to treat your anemia. That must be contributing a lot to your fatigue. If that gets better, and some treatment that you can stand well is started, I'm sure you will feel better. Keep hope in your new medical team.

I wish your and your family the best!

Purppura

Thank you for all your replies! It makes me feel good that someone actually understands. It really means a lot to me - I feel so much less alone.

Purppura

SweetHope

Purppura, please never feel that anyone here would "judge" you. These decisions are hard and very personal. We get it.

flaviarose

purpurra, anemia can really wear you down. My anemia took almost a year after chemo to resolve. You need to rest and eat well. I too was a professor - cancer made me retire early. Now that I'm done treatment, I'm kind of regretting my decision to leave work.... but I also take care of my 94 year old mother, and that is another story.

You are ER and PR positive - are you going to go on tamoxifen or do any kind of ovarian suppression? That is probably the best thing for you going forward, not that I'm a doctor.....

This disease, and its treatment can age you and wear you down. But, given time, it seems that many people go on to a more or less normal life.

Good luck!

LW0919

purpurin: you and I have a similar diagnosis. It's ok to be angry and/or frustrated. None of us signed up for this and it's hard to loose control of our lives because of an illness. Treatments are hard. Really hard. And it sounds like yours was particularly difficult. I'm 43 now and almost 2 years out from my original diagnosis and I'm still not back to where I was "pre-breast cancer". I too had anemia which is now better since I had a complete hysterectomy this past March. I get angry when I think about what all I and my family went through and I get frustrated thinking about the fact that it could return at any time. I do use breast cancer to help put things into perspective. When I'm having a particularly bad day, I think about how bad it was during chemo. I never complain about my hair anymore. I'm just happy to not be bald. That's the positive I came away with was the increased ability to cope with difficult situations because after cancer and the treatments a lot of the other stuff isn't that bad. I hope you feel better soon and until you do, feel free to be angry, sad, frustrated, etc. You've earned the right!

DivePuppy

Purpurra, you have to do whatever you feel is best. Before I started this BC adventure 2-1/2 years ago, I never thought this would be so hard. Two years out from chemo, on letrozole, and I still feel like h*** most of the time. Chemo brain, joint pain, you name the side effect and I probably have it. I don't know what the right choice is for you....only you know that. I might have been judgmental 3 years ago, but not now! Good luck with whatever you decide, and I hope the new year brings you better health!

momand2kids

Hi

I just want to add that you are only a year out, you have small children and a full time demanding job..... plus anemia--- I would think you would be tired. when I was one year out I was still exhausted (also in academia) with young kids---- tired all the time----

Sounds like you have a good team in place.... all I can tell you is now, I am over 6 years out---and I started to feel better in year 2 after lx, chemo and radiation---- I think it took the first year after treatment to just adjust--while we are in treatment all we can think about and work towards is ending treatment--it is like a very long marathon and we just want to get to the end as soon as possible. And when we get there, we are tired....

I generally feel great even after a bout with low level thyroid cancer (feel great now!).... but you feel the way you feel right now... I would honor that and accept that it is how you feel. It won' t feel like this forever--and you have good family and friend support.

hang in there....

new_direction

Purppura -

I think you are doing the right thing when you listen to your body. No more treatment was the right decision at the point for you.
I am 2 years out of treatments and only the last months I have felt like I'm starting to recognise my "old self" in regards to energy. I have not worked until now because I got so tired after only a few hours of work. I could not go shopping when there were many people - i would feel terrible, dizzy and too many lights, noises etc.

It has taken so long to get back to normal. I usually don't sleep during the day anymore, but I relied on that ealier to not feel too tired. There are still days where my head can not take all the noises, lights, it is really hard when you have kids, but overall I feel good now.

Be patient, take a break from your job if possible, respect what your body tells you.

Best wishes.

Bippy625

Purrpura,

I can understand how you feel. i nearly quit chemo due to SEs nowhere near as awful as yours. And I would have, but DH asked me not to. The neverending nausea, and diarhea, never have I been so ill. I am doing rads now and worry about further damage and lymphadema risks vs. recurrence if I do not do it. I have no idea if all of it will make any difference in the long run, though I very much hope it will. I did have CPR to chemo, and no detectable cancer after surgery, but will worry always despite that.

and thank you Hopeful, for nailing it about the burden of expectations on BC patients. I am still very angry, and must actively seek outlet to maintain my sanity. And, not apologizing for it either helps.

Beachbum1023

Purrpura,

Please know that I respect your decision, it has to be yours to own. We all make them, the good, the bad, and the downright ugly. We have all paid a very high price to ride the cancer bus. Sadly, we get on but fight day in and day out to get off the bus to hell. I hope that your care team will find you a solution, or just let you be to find peace your own way. Only you can know where you will find it.

thietkelogo

Trying to you, get pleasure from the smiles of the children, the husband is the motivation. Hopefully things will magically come to you!

lcm123

Hi, Purppura, I can understand about the fatigue. I am still tired, and I finished up all treatment by 10/2014. Have you had your thyroid checked? I have hypothyroidism, and it got rather severe late fall 2014. One of the worst symptoms of that is extreme fatigue.

You have a lot going on, with two little ones. I don't think you are being negative at all; your life is your life, and no judgment here.