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Chemo done and I'm miserable.

Chemo done and I'm miserable.

Posted by Lulu Paris on Oct 16, 2020 2:45 pm

Completed my chemo last week.  Double mastectomy scheduled in 4 weeks and suspect it will be here before I know it.  Struggling to find any joy in completing chemo.  Everyone thinks I should be “happy” since that part is done.  Problem is that even though I’m done with chemo I feel like its not done with me.  I’m 51 and I look 81.  I realize that it may be vain but if I don’t look like myself, I don’t feel like myself.  On top of that I have an ongoing battle with my 20 something son having to ask him to limit all social activity in order to keep COVID out of the house for my sake.  I’m drowning. 
 

Re: Chemo done and I'm miserable.

Posted by Runner Girl on Oct 16, 2020 2:55 pm

Hello Lulu Paris‍ ,

Congratulations on completing chemo.  We all looked unfamiliar when we were finished chemo.  It takes a little time for it to get out of your system and for your hair, eyebrows and eyelashes to return.  I found I had to go to a much heavier facial moisturizer than I had previously used during and after chemo - my formerly oily skin was gone.  If you've been on steroids as well that will contribute to the "looking different" in the mirror - it will go away, in time.  It also helps your skin as well as flushes the chemo out of the body if you keep yourself well hydrated, ensure you're taking in enough water on a daily basis.  

Have you explained to your son the ramifications of chemo (immune system compromised) and the potential for disaster if you catch Covid?  Under the Webinars tab at the top of the page are several webinars covering Cancer and Covid that you both may find helpful.

Be patient as your body recovers from the assault of chemo.  Pamper yourself in this in-between time until your surgery.  

I wish you all the best,
Runner Girl
Never stop believing in HOPE because MIRACLES happen every day!

Re: Chemo done and I'm miserable.

Posted by Hezz on Oct 17, 2020 9:20 am

Hi Lulu Paris‍ ...
I want to echo what Runner Girl‍ said...it takes time! I finished chemo on Septemeber 29 and I thought I'd feel better the follow week. Nope. I can say that it's been 3 weeks and I'm seeing the light at the end of the tunnel! My pain has finally begun to improve and my skin rashes are healing. Even my neuropathy is improving. I still have no hair though!!!!!!🤣🤣🤣
I agree that it feels like rushing to the next thing. I thought I was getting the whole month of October "off" to heal and rest,  but it has been non-stop appointments to get me ready for radiation and OT/PT for neuropathy. I'm trying to imagine this as kicking the cancer, then kicking it again, then kicking it some more...so it can't get up.
My best advice is try to take things one day at a time and celebrate all your little victories! You can do this!!!
Love,
Hezz :)

Re: Chemo done and I'm miserable.

Posted by Essjay on Oct 17, 2020 9:43 am

Lulu Paris‍ I hear you!

Through chemo, the drugs have stopped cell division. Your skin hasn’t been renewing itself, it’s why your hair falls out, it’s why your nails are in a bad way. I’m celebrating today that 18 months after finishing chemo my toenails have finally completed their regrowth and I have lost the discolouration, ridges and splits. 

I was going through pictures this week and I can see clearly how much cancer treatment has aged me. There’s nothing I can do about it though other than keep using a good moisturizer, eating well, managing my sleep, exercising etc.

You will have the same side effects after this chemo as before and the fatigue will have built up, it takes a while to bounce back. 

If you have the energy before your surgery, you might want to clean the house and stock the stores and freezer, because you won’t be up for much after your surgery. You have to avoid lifting and that includes grocery bags. Your activities will be limited - are you ready for that? I know some people find they need to sleep in a recliner or use a pillow that props you up, and small ice packs, heat packs and little pillows for the armpit really help with the discomfort. 

Im going to ask some others to chime in with advice on drain management and recovering from mastectomy Kims1961ashconBuffythevampirecancertakesflightWendy Tea‍ 

best wishes, Essjay
Triple Negative Breast Cancer survivor since July 2018

Re: Chemo done and I'm miserable.

Posted by cancertakesflight on Oct 17, 2020 9:51 am

Hi Lulu Paris‍ and congratulations on completing chemo. For me, the most difficult part of my cancer experience was the depression at the end of treatment, but I can totally understand if it happens between treatments, especially when you are not distracted. When you are not busy doing something to combat cancer, it feels like you are doing anything, which can be depressing. The other part is the return to chaos. When I was having chemo treatments, there was a very specific pattern to everything. I knew that every Friday I would be going for my chemo treatment. I wouldn't feel the best for a few days and then, once I started Taxol, I would have pain and body spasms on Monday. Every two weeks I would repeat the cycle. Once that pattern was gone, because my treatments had ended, I didn't feel the joy I expected to feel. I felt like I had done cancer wrong. In fact, I wrote a blog post about it if you are interested.

I May Have Done Cancer Wrong

The depression will pass. Please try to keep busy to distract yourself. Find something you enjoy doing. Go for a walk. Read a book. Do something different than what you would normally do?

Take care of yourself. Please keep me posted.

cancertakesflight.  
 
Laughter is a lifestyle choice. www.laughterandcancer.com/blog

Re: Chemo done and I'm miserable.

Posted by Nadian on Oct 17, 2020 10:39 am

Lulu Paris‍  My husband finished chemo six weeks ago for breast cancer and we are both miserable!  He has lost 35 pounds and looks 20 years older. He has no energy or appetite, is struggling with bone pain and neuropathy and insomnia.  On top of that, he had a second surgery to remove his lymph nodes two weeks ago and he has to recover from that with all those other challenges. Understandably he is very depressed.
I feel for you.  But hang in there and tap into whatever resources you can find. This board is a great resource. 
 

Re: Chemo done and I'm miserable.

Posted by Monie34 on Oct 17, 2020 11:39 am

So sorry that you are drowning, I understand that feeling 🤗. I am not drowning at the moment but have been there.  Finished chemo in Aug, Dr wanted to give me extra time to recoup from the difficult time I had on chemo so just had the mastectomy yesterday, that almost didn’t happen because I developed a cough the night before so last minute Covid test (after I had the injections with the radioactive dye😐) But Yay had the surgery.

20 year old boys can be difficult,  (mine are now 37 and 39) without the ability to see beyond the end of their noses and seem to think they know everything, combine that with all the stress of your treatment I can see you would be absolutely weary in spirit and see it as a lack of caring on his part. He is also going through a terrible time... covid and the curtailment of life as he expected it, mom sick and not normal. He may not have the emotional strength as well to handle it as well as he should. Have you reached out to the social worker at your oncology center, they might have some great  suggestions on how to bridge this gap in understanding 

It’s not vanity... losing this part of ourselves  is traumatic and a very personal decision on whether or not to reconstruct. And some people’s comments that aren’t in this situation are so pat, that it seems to diminish the emotional  angst we are experiencing. The thing I kept coming back to was my desire to eradicate the cancer whatever it took!  

All the best to you! My prayers and my thoughts are with you. Ramona
 

Re: Chemo done and I'm miserable.

Posted by Buffythevampire on Oct 17, 2020 1:48 pm

Lulu Paris‍ I don't feel like the previous me either and I don't look like the previous me. But I am hoping I kicked Cancer's a** out of my body where I don't want it anymore. 

It's been just a little over a year since I finished my chemo treatment and although most of the side-effects are gone some still linger. Toenails are ok but the fingernails are still dry and splitting. Plus I am still on Letrozole so I have those side-effects (menopause and a few others) and I still have a little over 4 years to go. I am heavier now then I have ever been. Eventually the weight will go down but it wasn't overnight that it appeared, it won't go away overnight either.

I had mastectomy on left side which now has an implant. Right side was reduced/lifted. My journey started as a bleeding nipple so nipple had to go. Yesterday was the birth of my new nipple. Haven't peeked yet (curious but nervous). Final step will be the tattooing. It will be bittersweet when I have my final appointment with my Plastic Surgeon. He is my favorite person to talk to during this chapter in my life and I am going to miss him. 

 

Re: Chemo done and I'm miserable.

Posted by MCoaster on Oct 17, 2020 2:02 pm

Lulu Paris‍ Your post is certainly one that many here relate to.

 I was lucky that I did not need chemo or radiation after my bilateral mastectomy but then I had further issues with my health and after doing fairly well after the initial treatment I think I had used up my reserves and sometimes have to dig even deeper to deal with the present.   One thing that I have learnt by what has happened is that I am stronger than I think as long as I can feel in charge of what is happening now.  I am now in my 76th year and feel every year so have to use my time to deal with the now while acknowledging what the future may be.   Sometimes I think it is possible to spend a lot of energy looking backwards then we trip over what is in front of us!   As a wife and mother I am only now learning how to sometimes put myself first and letting others know what my needs are.   I have even directed my husband and adult children to informative web sites so that they understand what is happening but I am careful to make use of only trusted sites.

It is hard to look in the mirror and see someone who is not the real you and I can relate to that too but I now smile at myself when I look.   Probably sound stupid but I do see the real me who chooses to smile.  

It is so stressful when people who are not in your place act as if everything is now hunky dory.    They do not mean to be mean but it can be so hurtful.  On this site we do understand because we have all been through our own version of dealing with cancer.  

I use mindfulness, playing scrabble on my iPad, being in my garden which I am lucky to have and whatever takes my mind to a healthier place for a while so that I can recharge.

Monie34‍   makes a good suggestion about contacting a social worker at your cancer centre.

Caring hugs.

MCoaster




 

Re: Chemo done and I'm miserable.

Posted by Kims1961 on Oct 17, 2020 4:10 pm

Lulu Paris‍  Just by the responses alone, i hope you see that you are not alone in this feeling.  Sometimes its the "expectations" on how we think ( or  how others) we should feel.  It reminds me of the "letdown" feeling people can have after fun events like weddings, holidays etc. In fact, many cancer patients have this feeling of sadness after treatment is over , For me, the mental health rollercoaster is so important.  I had to learn to stop "shoulding" - i should feel this or that - or i'm "lucky" to be done - you know the drill.

Take your time.  Your body and your mental health have gone through so much.  Just the chemicals alone can mess up our mood, our emotions.  It can almost be like we don't trust or know how to feel this new way of being. For me, it was like one day out of the blue, i just started to feel like me again.  

I also had a double mastectomy, so that also took some time to adjust to the new me. To adjust to this new body.  I found it helpful to look at photos prior to surgery, as i had no idea what it meant to have a double mastectomy, only I knew it was the right choice for me.

Recently in a Vogue magazine from the UK, they featured women who had mastectomies and how beautiful and powerful they looked.  They may have thought they looked "old" and aged, but the strength in their scars, tells another story.

So glad you posted - you have helped many with your post.  Please let us know how you're doing.  Kim
Her2+, ER+ Bilateral mastectomy in 2017, followed by chemo and radiation. Mack and Hannah's mom

Re: Chemo done and I'm miserable.

Posted by Lulu Paris on Oct 17, 2020 7:59 pm

Thank you everyone for the advise and support.  I underestimated all that cancer takes.  I guess I thought once I got through chemo there would be a sense of relief and "check - done!".  Sadly most of what I hate about chemo will hang around for a while.  I will give myself permission to be sad, mourn, and then move on as we all must do.  You all have reminded me that I'm not alone.  

Thank you my pink sisters.  

Re: Chemo done and I'm miserable.

Posted by JustJan on Oct 18, 2020 9:55 am

Lulu Paris‍, 
Congratulations on completing chemo as it really is a difficult thing to navigate. One of my oncologists said it will take 6 to 12 months to recover from treatment. Each person’s journey is different and recovery will be different for everyone. Please be kind to yourself. After 2 cancer diagnoses, 2 surgeries, radiation, chemotherapy and all the tests and appointments I was afraid I would crash and burn when I was done treatment. I decided to meet with the social worker at the cancer centre to discuss moving forward. This was a big help for me   and helped me appreciate all I had been through and provided me with strategies about getting on with life. 

You have one more hurdle to get over, and use the time before your surgery to rest and recharge. This time really is all about you and what you need to move forward.  

As for your son, I am not sure what to suggest other than being very frank with him. Can he isolate himself away from you so that you can be protected? I like the suggestion of watching a video that someone else posted here.  

Do take care and I wish you all the best with your upcoming surgery. 
Strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't. - Rikki Rogers

Re: Chemo done and I'm miserable.

Posted by Kattie666 on Oct 18, 2020 9:58 am

Thank you so much Debbie. cancertakesflight‍   I really needed to read your blog!  I too have handled this pesky thing called cancer with as much humour as possible.  I am finding that now Chemo treatment is finished, I am left in limbo.  I have had great family support during my "journey"  but find comments funny when people say you are rocking this, you are kicking cancer's butt.....no I am not....chemo is (I hope!!)
After months of feeling unwell and blaming it on an inherited kidney disease (polycystic kidneys and polycystic liver), I finally got to bottom of it with an ovarian cancer diagnosis.  This came March 5th 2020, right before the world shut down.  Leave it to silly me to need major surgery and chemo during a pandemic.  I started Chemo on June 18th.  Last treatment was October 9, and now we wait?????   Wait for what?  I have a scan coming but not until November 27th.  What am I supposed to do in the meantime???  Fatigue is still a problem at this stage... but I don't look sick....  my type of chemo did not cause hair loss, and steroids for side effects caused weight gain....  
So just to make life more interesting, my kidney function took a huge hit during chemo.  It egfr went from 25 down to 17, a pretty significant drop.  Now nephrologist wants me to start thinking about dialysis training.  So maybe that is what is next... 
Thank you for your blog.  It really helps me turn my thoughts around when I read other's stories that I can relate to!
bye for now
Kathie

Re: Chemo done and I'm miserable.

Posted by RedPhoenix on Oct 19, 2020 6:08 am

Lulu Paris‍ 

I'm currently in chemo, just finished round 2 on Wednesday so I can't speak to finishing chemo feelings.  I can definitely say that my feelings and emotions have been a bit of a rollercoaster about the whole diagnosis, surgery (mastectomy left side and 7 lymph nodes removed), treatment, lacking info at times, constantly waiting to hear about one appt or another or results from this and that test or scan, being asked the same questions a million times ( does nobody write this stuff down?!?), and then weird off the cuff comments that can feel like they are diminishing the significance of what is happening inside your body.
I have definitely developed a take no sh!t kind of attitude. I took up journal writing to get some of the more angry/may be hurtful to others kind of things of my chest. It has a big F U cancer on the front along with a very poorly drawn middle finger. Lol   But in all seriousness, getting some of the "ugly" stuff out of my head instead of letting it  festering in there , has been helpful. It takes those in the moment emotions and let's you either deal with it more or decide that's all you needed, was to get it out. 
I hope that you find peace going through this or at least just some not so intense feelings and days. Biggest of hugs❤

Re: Chemo done and I'm miserable.

Posted by Dodi on Oct 20, 2020 8:15 am

I am sure it’s an extremely tough place to be right now, finished with one step and waiting for the next. I can’t and won’t say I get it, but I do empathize greatly. 

I will say I completely and utterly understand the  battle with a 20 year old son. I really would like to understand how they think, because for me it’s a no brainer. Your health can be extremely compromised and he needs to understand that you aren’t saying to follow the Covid -19 rules for keeping safe and others safe.... mine doesn’t get it either... and I don’t know why. 

hopefully the next 4 weeks will pass quickly, maybe something along the way will allow you to feel a little bit of joy.