Five years post diagnosis..and I am angry

GointoCarolina

Does anyone else feel like you were kicked off the bus the minute your chemo was over? I was deathly ill during chemo,was hospitalized for ten days with acute erosive gastritis and lost over 30 pounds during treatment.I complained about my stomach almost from the first treatment and was told that it could not be from the chemo....I am left with chronic gastritis,my allergies became worse than ever,my eyesight was affected but worst of all is the muscle I lost and replaced with fat when I finally started eating again....but was still so weak I could not do much.The weight loss was never mentioned and I was given no plan for rebuilding my strength.When I asked my onc about my fatigue and lack of stamina I was told that I would hit a plateau and that was where my energy levels would stay and most people never regained all their strength.I was never offered anything to help me regain my strength and rebuild the muscle. I find myself crying,I really thought by now I would be feeling better.My blood counts are fine,I do have fibromyalgia,but before chemo there were long stretches (months) where I forgot I had it.Every time I start feeling a bit better and try to exercise(I am not talking anything major..a 20 minute walk or 20 minutes on stationary bike) I wind up hurting my back or sciatica flares..I had this before chemo,but never this bad.Has this happened to anyone else? And did anything work to make you feel better?I keep having this feeling that it is too late,to give up and accept that this will be my life......

dlb823

So sorry about everything you've been through, and I certainly understand your anger about some of the things you were told. Unfortunately, most oncs focus on one thing -- getting us through chemo. I found out pretty quickly that it was up to me to figure out what I had to do to rebuild my body and my life, because I wasn't willing to continue to be a victim of what I'd been through.

Besides support here on BCO, including an exercise motivation thread (our group has sinced moved to FB, but I know there are others here), I saw an integrative doctor, then a naturopathic doctor, then started going to the gym, and worked with a personal trainer for a couple of months. I honestly think walking was my mental and emotional salvation, as well as strengthening my body. If you can't walk for 20 mins. without risking injury, how about 10 minutes twice a day, and maybe at a slower pace, at least to start? It sounds like you might be trying to do too much for where you are right now. Do you have really good shoes for walking? Is your stationery bike properly adjusted for you? Little details like these can make or break your efforts. For the fibromyalgia, have you tried a gluten-free diet? I've heard of so many people getting improvement by eliminating gluten.

But mostly I think motivation and support are really important. Is there someone you could walk with? Can you join an exercise support thread here on BCO? Would it be helpful to talk to someone about your anger? I don't know, but maybe that anger needs to released, so that you can move forward.

Please don't give up or believe it's too late. You have a lot of life left to live, and there's plenty of research showing that bc survivors who are physically active have a significantly lower risk of recurrence. Don't let past experiences or the careless words of a doctor diminish your future. (((Hugs))) Deanna

GointoCarolina

Thanks,Deanna..after I posted,I felt better..I guess I just had to let it out.I am usually pretty positive,but have had some rough spots the last year. I made the decision to go see my long time PT who will assist me with all this.I have not had a car for a few years and live 15 miles from the nearest town with any kind of facilities.That made things difficult.Getting a car this week,so no more excuses.Anyway,things were put in perspective for me this morning.There was a segment on TV about the Wounded Warriors and their band.I don't normally have the TV on,but my husband had turned it on and went outside.I heard music and came to check it out.What I saw and heard made me realize I have just been having a pity party and to stop whining.The one young man really inspired me and if he can have a positive outlook on life,I can too.

Bounce

Hi pandazankar

I am still new to all this cancer stuff - am just doing radiation now - and I didn't do chemo so I am not qualified to give any advice. I just wanted to say I understand your frustration. I have never been able to do sports - always landed up with an injury of some kind. [I think as a kid I had some kind of undiagnosed muscle problem that today would probably be treated.]

When I was diagnosed with cancer I realized how important exercise is so I started. All I could manage was 3 minutes on an exercise bike. And 1 minute of that was without any resistance!

Gradually I have been building up but I am doing it very slowly so as not to hurt myself and have to stop.

Thanks to some ladies on this site mentioning that their medical facilities offer exercise classes to cancer patients I asked at my center and after 4 attempts found the person in charge and got permission to join the group.

I did my first class this morning and I can't believe no-one told me about it. A physiotherapist runs the group and I could hardly do any one of the exercises I am so weak.

The physiotherapist was great and encouraged me to push a bit but rest when I needed to and not kill myself.

Pity parties are OK. I have thrown some great ones myself. Just know that starting with baby steps for however long you need is also OK and working with a physiotherapist - especially if its someone you know and trust sounds like a really good idea.

I have found that trying to get my exercise in early in the morning is a huge help. I have more energy and it doesn't hang over me all day like an awful chore. I work so I don't always have time in the morning but weekends are great. And I have started thinking of it as something that just has to be done - and not debate in my head if I will or won't manage.

Music is a huge help for exercising.

Hope you start to feel better. Sometimes it feels like me are just heading up hill for too long.

dlb823

Oh, I'm so glad you're feeling better today! And, yes, something like not having a car can be very depressing and leave you stuck in a negative rut.

(((Hugs))), and so glad you vented here and have made plans to see your PT! That sounds like a really great step! Deanna

PS ~ Just wanted to add to what Bounce said above about music. It's a great mood lifter anytime -- not just for exercise. I remember intentionally cranking up favorite music many, many times during my first year post-tx, to lift the blues that seemed to settle in my house at times. I've occasionally seen play lists for going thru chemo here on BCO that are really good, and you can Google similar lists if you need ideas.

GointoCarolina

Thanks so much..it always feels better to come here and let it out.I saw my doctor today....no exercising for me until I have a bone density test on Friday and he wants me to have an echo the first week of December.He is concerned that there was no follow up echo or MUGA,I dropped to 55,but never had another heart test after that one to see if I rebounded.He also mentioned a bone scan,but I won't think about that yet.I see my PT on December 16,so I have to be patient until then.I love music and it has gotten me through a lot of times I wanted to give up.I must have listened to REM "Hold On" a thousand times during chemo@!