Life after treatment--grateful but battered

I feel exactly the same and I'm not finished yet...(I'm in the middle of my chemo treatment). Hope one day I'll find my laughter again

I had remarkably similar circumstances to yours, except I was diagnosed at 52 and lost 30 lymph nodes. I am in year 5 of taking Aromasin. I highly recommend a form of Vitamin B6 called P5P, or Pyridoxal 5 Phosphate, for the joint pain. I had two trigger thumbs and had to use two hands to lift a glass when my chiropractor recommended it. Two pills, 2x a day, and three weeks later, I had pain-free, working thumbs. The thumb joints are still a little stiff, but I can bend my thumbs without wincing in pain. I still take 2 pills once a day. I buy Thorne 33.8 mg. I also use Panaway essential oil and Cool Azul pain cream, both from Young Living. I hope this helps.

Tigio, First let me say how much I loved how you started your post - we are warriors. It is sometimes hard to remember that. I echo all the things you have said. I had IDC and DCIS in one breast and ADH in the other. At the time time, they thought I might have a gyn cancer too. Fortunately, I did not but did have to have bilateral mastectomy and total hysterectomy at 44 years old. It was a journey but ended up with subsequent reconstruction. I choose not to do chemo since I had an intermediate oncotype, but I am constantly reminded of this decision by the little nagging voice in my head..... and the oncologist. Yes, I am glad and blessed to be alive, but there are still problems to deal with. Joint pain, headaches, weight gain, lymphedema and chest wall swelling and pain. I am on my 4th AI Aromasin .... well actually it is sitting on the counter because I haven't started it yet. Tamoxifen, arimidex, Femara all had their horrors for me. I made it the longest on Femara until I realized the unrelenting daily headaches the neurologist could not fix were actually from the meds too. Stop the meds, stop the headache. So you can see my reluctance to take this new one. I just don't know if I can go through another one.

I am 47 now, and have been told these side effects were because of my age or because I wan't patient or because .... just because! I wanted to scream at them because I am not even 50 but feel 80 just like many of you. Instead I smile and try to find someone else who will listen. They are few and far between. Most days I try to find the brightness of life. It is there if you seek it. I write poetry and mediate, work full time and still manage to be a mom/wife/daughter. It is just refreshing and awesome to know I am not alone. Thank you for your post. Know there are other warriors with you. We will find a way and hope to be continually redefining the new normal.

i agree I do water aerobics and its the best feeling bro g in the pool!

So sorry Nutfarmer. You have been through hell and back. I hope the new spots are nothing.

We are all victims of an insidious disease. It’s one that keeps on giving unfortunately. We will never be normal again emotionally or physically. We drew the unlucky card. It’s also a disease you have to endure to truly understand.

I don’t resent people thinking we are cured post-surgery but I do tire of the comments that okay you have survived X number of years so stop stressing over it. If only...

I’m 7 years out in August. Early stage, low grade, non-aggressive BC. All the stats are encouraging but they are just that - stats. I’m blessed I’m still in remission but I’m also aware things can go south even after 7 years. I’m an optimist but also a realist.

So many women have suffered with this disease and despite the cheerleaders section from Susan B. Komen and others the death toll is still too high and more younger women are DX than ever before. It’s heartbreaking.

All we can do is take it one day at a time and keep the faith. We have a support group at church and have already lost one of our group and another’s BC has metastasized. My sister just had alocal recurrence. Way too close to home.

This website has been my lifeline from the start.

Diane

Hi - I wanted to ask what state you live in? I am getting ready (in another month, currently doing radiation) to switch out expanders for implants and cannot find a good plastic surgeon in my area. I live in MD, but am very close to DE. The PS that placed the expanders botched me up so that I am in constant pain. I would love to feel better in that area when I finally get my implants. It’s been four miserable months with these TEs. I had a bilateral mastectomy in February 2018. Please let me know if you are anywhere near me, so that I could possgo go to your PS.

Thanks,

Joan

Hi Superwomen, warriors and survivors

I have spent today in bed, trying to sleep because I am so exhausted from working myself to the bone- trying to be normal. And truth be told, I feel really low. I think part of he reason is I have a pain in my affected breast and I am totally shitting myself.

I finished treatment on 1 December 2017. Lumpectomy and reconstruction R breast, 2 lymph nodes removed, 6 months of chemo (4 red devils and 12 taxol) and then 6 1/2 weeks of daily radiation, burns included. But I was Superwoman during my treatment.

I made a deal with G-d - "Listen Sister this year we're focusing on cancer ok? Not anger, not depression (I'm a chronic sufferer) but healing and getting through this journey."

I had 2 mantras "a positive attitude with gratitude" - I found my lump, it was only stage 2, lump stage 3, they found a second one when they did the lumpectomy, my surgeons were great, there was no spread, I handled all my treatments relatively well TG. No neuropathy (tingling in the hands and feet), no mouth ulcers, a totally stuffed digestive system, but hey, it wasn't great to begin with. All reasons to feel grateful. And every day I looked for new ones, my first one being, thank you G-d for waking me up to live another day.

My second mantra was "get up, dress up and show up". Not the easiest thing to do when I felt lousy and miserable and wanted to go to chemo in my gown, pjs and slippers, lie on the chair, get my chemo connected to my port - and cry! But instead every chemo I had a theme. This typical type A personality behaviour- find something you can control. Well I couldn't control the chemo, what, when, how. I couldn't control the cancer. But I could control my attitude and how I looked. So if it was a green scarf, it was green clothes- the green machine; red scarf- red clothes- the lady in red; orange - orange is the new black; blue- the blue bullet etc etc,. It amused my onco and chemo nurses and made me feel empowered.

And yes telling one's loved ones about the BC diagnosis and losing my hair were the absolute worst, most difficult and traumatic moments in this whole journey.

I had long dark brown hair which I had harvested and made into a wig. The first time I put it on I freaked. That's not me anymore, I don't want a wig that pretends that everything is normal - I wasn't having it. I wore it 4 times to get my nieces ready for the fact that my hair had fallen out. Then I got a blond wig, a bob. I thought, why the hell not. I might as well have some fun with this hair change/loss thing. I called her Uma after Uma Thurman, the tough warrior killer in Kill Bill.

I then had enough of her and started wearing scarves. I live in South Africa and Black women here traditionally wear scarves. I went and bought the brightest, most gorgeous African print scarves, got taught how to tie them (so easy) and I felt like a queen - and transformed my work place in the process!

But I used to walk around with my bald shaved head a lot. I loved it.

I was off work for 6 months when work and chemo were just too much. Luckily my Firm had insurance.

On 9 March I ran my first 10km race ever in my life in Jerusalem. During chemo my local cancer charity had organised for people who ran the Jerusalem marathon (42.2kms) to run with warriors' names on their back. Someone ran for me. I was SO motivated that there and then I decided my survivor goal was going to be to run the 10km. The most I'd ever run as an adult was from my bed to the shower when I was late for work.....

I started training on 18 January 2018, 5km runs 3 times a week, most of which I ran/walked and 6 weeks later I met my best friend Lara, who flew in from Holland, and my best friend from South Africa Rosemary - and we ran the 10kmin glorious Jerusalem! Praise to G-d for giving me the strength to do it. I still run - it gives me tranquility and calmness which I don't get from anything else. I'm a plodder, I run slowly, but I have a group of women who meet every Monday and Wednesday in my hood- and we run 5kms. I'm the last in usually, some of them are super runners- and they are the most supportive, fun crew ever!

Going back in March to work however has been a living hell. Here I was with an attitude of "my cancer journey ended on 1 December 2017, now it's time for the new normal." My new normal unfortunately in my mind - and those of my bosses and colleagues, was cool, it's all back to the way it was before. BIG MISTAKE!

Fatigue after chemo? I was feeling it every day after work! I was exhausted. I was working ridiculous hours again, work was super stressful and I was, and still am, totally overwhelmed. No one prepares you for this. The second part of the cancer journey is recovery - 1 year of treatment = 1 year of recovery.

It has been SO hard. I remember my "on-boarding meeting" with my bosses and HR the day I came back. Do you need any adjustments, any different schedules? Superwoman in denial over here, No I'm good thanks. All fine, back to normal, let's get on with it.

I didn't know what to expect in terms of fatigue and emotional stress. They certainly (thanks HR!) didn't do ANY homework on ways they could manage my reintegration, for example:

Half day in the office, half day work from home - for at least the first 2 weeks back. Sleep for 30 minutes/an hour in the afternoon and then work. Is there a sick bay with a cot where you can go rest when the mid-afternoon fatigue hits you; at least one day working from home for the first few months so that you avoid the stress and energy involved with your commute; come into the office after rush hour to avoid the stress of the commute (especially if you drive); leave early to avoid rush hour - if necessary work from home an hour a night if you leave early; come in later 2 mornings a week, because between chemo induced insomnia and tamoxifen induced menopause insomnia, you are sleeping terribly. Have the option to work from home if you don't feel like putting on your "happy face" that day - the one which makes everyone else feel better! I could go on, but those are some common sense basics - if you can negotiate them.

So facing up to the PTSD, which is very real post treatment issue, confronting what I had got through last year but never dealt with, like my mortality, my body failing me, the horror of treatment - all created a nice emotional tsunami, which finally broke. Thanks to my therapist and Venlor and urbanol (anti-depressant and calming drugs which don't affect tamoxifen!!) I'm better TG.

But it is a hell of a journey and living with the anxiety of recurrence G-d forbid makes it damn hard. So today was a day I didn't feel like putting on my "happy face" and being strong and reassuring for everyone. So I didn't.

I came onto this website to see if anyone else had posted something about breast pain. And then I saw this discussion group.

Thanks for letting me vent my BC Sisterhood - only you can understand! Strength, love and light to you all, you immensely brave and beautiful women xxxxxx

I appreciate this post so much . I am in physical therapy and still have many side effects from treatment almost 18 months after finishing herceptin. I appreciate reading about others facing the ups and downs after treatment.

Thank you for posting! I went through a partial mastectomy and then a second surgery to get clean lines. Then I had 6 weeks of radiation. I started on Femara and within 3 weeks I was so nauseated and vomiting. I started aromasin 17 days ago and I am nauseated again! My hands,feet, ache.

Everyone expects life to be great now that I am a survivor. I don't complain, I would seem ungrateful. My new normal sucks! Even with all the stomach meds I feel horrible. I may quit hormone therapy. Quality of life is important to me.

Invasive ductal carcinoma left breast

Thanks to all of you for posting. I have been dealing with fatigue (along with other lingering SEs) and how to respond to those who ask about the fatigue - chemo and radiation are over so what's the problem? Also struggling with my feelings about those who I thought would be supportive and were not. I do find joy in my hair returning thick and curly, my new nails and eyelashes

Survivor...I don't know if I already wrote about this, but I hate hate hate that word! I don't want to be survivor. To me, it means that you have been into something pretty horrific and you have sustained serious damage - physical, emotional etc. I don't want to be a survivor. I just want to live and not be affected (especially negatively) by what happened. So far, not working so well - the discomfort of the implant lets me know 24/7 that it's there. Even if I do not look in the mirror, I can't close my eyes and pretend that it's ok. To everyone else, I look great, "nobody can't tell say my plastic surgeons". Glad that it does not draw negative attention..

Wishing everyone of you ladies here to just live your lives after cancer and not be negatively affected by what has happened to you.