scared of the end of treatment, beginning of....?

jessamine

I am so thankful things are going well for me- I'm almost done with chemo and it's been very successful. And I've been lucky to have really good practical support through all this. But I'm not excited about the end- I should be I guess but I just feel scared.

No more plan, no more structure, no more support in place- just me and worrying about recurrance for the rest of my life, not to mention 5 years of side effects and months yet till the reconstruction stuff is all done (expanders etc).

I know I'm not the only one to have felt this. But people in my life just don't get it, don't get why I don't want to have a party to celebrate "the end" of all this.

Help!

sheila888

anandi....our loved ones and friends believe once the treatments are over, everything is behind you. My most difficult time was when I had my last radiation. I was so scared, felt like fish out of the bowl. I was still getting Herceptin But because my hair started to grow, suddenly everybody expects to continue life like nothing happened.

It gets easier in time but for me it was never 100%.

Hugs to You.

Sheila

Susie123

I understand how you feel. It's been a couple of months since my bilateral mast and I did better during the surgery and recovery than I do now that I'm well enough to return to normal. I think the problem is that I know it will never be normal. There's always that little thought that it could return and I could die. I never really thought about that before cancer, but now from time to time it pops into my mind. I hope with time that thought will go away, but for now it's there, and it's depressing. I guess it's just another stage that we have to go through. Hopefully it will be a short one.

Susie

TNgolfer

jessamine,

I, too, went through a lot.  Like all of us, a lot of tests, a lot of procedures, but the minute we are back in street clothes (out of the pj's) and off the couch, everyone else thinks we are fine!  They aren't insensitive.  They just want it to be over for us, so they declare we are fine and then they don't have to worry anymore.

I had my "last" follow up appointment with my breast surgeon last week.  She said everything was fine and she would see me in 6 months.  I started to cry.  It even surprised me.  It's like we broke a leg, they set it for us, put the cast on and gave us the crutches.  Now the cast is off and they have taken the crutches.  We are on our own!  It had to happen.  It's part of the process.  It is normal to feel a sense of loss.

This is the woman who gave me the diagnosis; who explained the pathology reports; the woman who had tremendous patience and answered all my questions (though it probably was the hundredth time she had answered that same question); the woman who tried valiantly to save my breast with an additional lumpectomy to try for clear margins; the woman who ended up having to take all my breast tissue in a bilateral mastectomy; the woman who held my hand when I broke down in her office and sobbed because I was so tired and I just needed to get some sleep.  But now we must move on....I want to move next door to her; I want to see her every week.  But just like little children, we must leave the nest.  Her (and other providers) success will be measured by our independence; by our standing strong on our own.  We don't need them any more.  We will always, always love them, but we don't need them.  Celebrate that!  We'll be fine!

Marianne

rubyredslippers

Yep, it's like youve been set adrift and have to somehow find a way to cope with the fear, depression etc. Without a structure of treatments and appointments etc to take your mind off it, and also to make you feel that as long as things are happening Im doing something so dont have to think about it as much.

I found the same thing, the treatment is over, your hair is starting to come back, so they think it's over and just assume youve moved on because they have - no they dont get it, and never will unless it happens to them. The fear, anger and depression (or whatever is your reality) is there for you bigger than before and youre left to somehow deal with that - in my case I dealt with it alone. I had no support group or therapist. I dont recommend that you deal with it alone, I know that I would have been a lot better had I had adequate support. However, Im over that first 12 months from the end of my treatment and Im in a much better space than during that 12 months. I still have bad moments, and I am still battling with depression, but I battled depression prior to my diagnosis, so that cant be blamed entirely on the BC. It will get better, just hang in there. I found that coming to this forum and asking questions, and getting support was a big help to me. It helps to know that what youre feeling everyone else has felt too. We all know how it feels inside, and we all know the ignorant crap that others pile onto you. I actually had a horrendous 12 months - one horrible person at work told me off one day and actually said to me "youre a waste of space" (shes not a nice person, and what happened wasnt my fault but hers) - that was said to me at approx 2 months after my treatment ended, and it was devastating. I believe that if I had been able to take that 12 months off work and stay home away from this kind of workplace stress would have been beneficial. However, I had to work to survive financially, but I still came through that 12 months and have healed alot, so hang in there, you will get better.

Anonymous

This is my biggest fear...after the treatments. I have 6 more radiation treatments to go. How do I adjust back to the time of no BC? Atleast right now I feel like I am doing something active against the cancer. When I leave the center for the last time, I will no longer feel like I am doing anything active. I am triple negative so no pills for me. I am really scared for the treatments to end.

Bri86

Yeah, I really wasn't prepared for the emotional crash that came with the end of treatment. I was so fixiated on getting through the treatment and being finished with it all that i was on a bit of a permanent adrenaline rush. I never really focused on what i was feeling about everything, just go, go, go. I guess I thought that my hair would grow back (the only obvious physical clue that could indicate i'd been sick) and i'd magically go back to life pre-cancer.So now, that everything is over (just finished my last major reconstruction this jan) and everyone expects me to back to normal, i've been getting really angry and frustrated over everything thats happened. Its a bit weird for me because i was so obsessed with staying possitive through it all that i don't think i ever really let myself experiance the negative feelings in any real way. Its great that you're already tapped into the online community for support because i really neglected to do that. I'm just now realizing how imporant it is to talk to people who actually know what i've been through-they are the only people who can really undertand. But, it get better everyday-just ups and downs and lots of writing in the journal! Its all just part of the process though, and being done treatment is amazing.

ssb34

  I'm not sure if this is how it works here,but I feel I can comment here and ask for help of my own. I went through all my tx(treatment) with my share of problems, I had chemo, surgery then radiation . I've finished "everything" The chemo pushed my into menopause, I was not ready for that. It gave me severe anxiety and depression I see a psychiatrist and an accupuncturists for both and I still have not felt normal. When does normal come?

nancyluvspink

I am with y'all.  In 2000, age 35, I was told I had BC.  Surgery, chemo, radiation and then....nothing.  I felt so empty and "naked" walking out on my last day of radiation.  Like one of you said, from the moment I was diagnosed, it was constant phone calls, appointments, tests, chemotherapy, rads....then nothing.  In 2006, I heard those awful words again, "you have bc".  Again, the panic, the surgery, the chemo, the rads, and once again....nothing.  I was triple neg both times, so I don't even no about tamoxifen.  No one can ever understand the fears and feelings we go through.  No one, unless they have been there.  It is my only salvation.  Knowing that WE all can relate to the emptiness you feel when your treatment is over and you are supposed to jump up and down and celebrate...yeah right.  Now I see my oncologist every 4 months, get blood work done and that's it.  I feel empty when I leave.  I hate this disease.  Nancy