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Late effects get me down

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Sigh. I am a 20 year survivor of nhl and the late effects can get me down big time at certain times. Can't seem to get ahead of things as most of the late effects are lasting and have no fix, heart damage from chemo, early arthritis from radiation, chronic fatigue syndrome from it all, respiratory issues that aren't getting better, yada yada yada. I am so sick of it all, sicker of the doctors and their sometimes invalidating ways and somedays just feel like curling up in a fetal position, blankey over me and sucking my thumb for the rest of my days. Know the feeling? I have a positive attitude most days which is pretty unreal when I look at all my trauma and situations but every now and again I have one of THESE days, ick. Sick of staying home but not well enough to get out for long, blah blah blah blah blah. 20 year surivor? - YAY and the occassional - SIGH. Anyone out there feel the same way in similar situations? Please don't say 'you are lucky to be alive', I know that but I feel that we need to also be able to confront those days when the price we paid for living comes at such a high fee. Know what I mean?

zahalene's picture
zahalene
Posts: 624
Joined: Nov 2005

I am a 22 year survivor of breast and bone cancer.
I was 38 when first diagnosed.
I know where you are coming from, believe me.
I have the arthritis, osteoperosis, chronic fatigue, circulation issues, and I still carry my 'chemo brain' card.
What has helped me as much as anything is creating a different set of expectations for myself as I had when I was younger (60 now) and before health problems. (I almost died from kidney failure 4 years before the cancer hit - took big doses of steroids for 6 mos, lasting side effects there too.)
I have found things to do that allow me to 'put my feet up' and still be involved in life and productivity. This site is one example. I attempt to be helpful and supportive here for a few hours a day during my 'down times', then shut down the computer and get on with the other aspects of my life.
I plan ahead and pace myself and look for some satisfaction in the 'little' things of life.
And, yes, I have the days when I wish I could do more. But then I also have days when I wish I would win the lottery. I try not to dwell on either possibility...let life surprise me. :)

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Hey Zah, Thanks for the inspriring words, I truly appreciate them. I have noticed in our chats in the room that we do have alot in common as to our late effects but appreciate you writing them down as well on the Discussion Boards for others to see as well. I have my down days as we all do and this site is a great one so that we may unload and be validated by others who know where we are coming from, like yourself. I think a big part of my reasons for getting in this big C funk is because due to some of my late effects I am stuck at home so much and since I live alone now that can become tedious and frustrating. I have a counsellor I see once a week to talk things through but sometimes I just feel like forgetting it all - medical intervention I mean, sick of doctors and hospitals and tests. As you can see, the funk ain't gone yet. lol. I do what I can when I can around the apt and in life though, have started to not sweat the dishes not being done for a couple of days til I am up to it,yada yada, so that I think is the beginning of living with new expectations. Thanks for your comments they are helpful. God Bless and see you in the room.

terato's picture
terato
Posts: 384
Joined: Apr 2002

I was diagnosed when I was 28, underwent two surgeries (left testicle + lymph nodes, inside of spine), two years of combo-chemo. Presently experiencing hypertension, high cholesterol, angio-dysplasia of the colon, diverticulosis, migraine, short-term memory loss, esophogeal reflux and chronic fatigue. Other than that, if I was Mary Todd Lincoln, I would have to admit that I enjoyed the play!

Rick

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Thanks for the comments Rick. I can see by your late effects that you know where I am coming from and each and every day I too try to 'enjoy the play'. God Bless.

Eil4186's picture
Eil4186
Posts: 967
Joined: Dec 2007

I know what you mean with the phrase "we are lucky to be alive". Yes that is true, but I think that its only natural to mourn what we have lost in order to live. I don't have all of the effects that you do, but I hate that my life was irreversibly altered by cancer and its treatments. We can be grateful, but still miss the way things used to be and the way we used to feel.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Some days all we need is someone to say 'I've been there and know what you mean'. Today was one of those days so thanks for being here to validate Eil.

God Bless you and yours and your little Kitty too. lol.

I have 2 puddytats and I swear they do me more good than any of my bottles of meds.

lfly's picture
lfly
Posts: 50
Joined: May 2008

I thought I was just being ungrateful with all my late chemo effects! I've been to my onc, and pc dr and they both acted like they had no idea what i was talking about. That "at least you're alive to be there for your 13 yr old" is so aggravating. I'm just now 40 yrs old and on total disability due to CA and the side effects of the chemo. I used to be very active and physically able to do what ever i wanted. Now i'm lucky to get all my shopping done before i run out of energy. Crushed vertebra in lower spine from CA. Chemo brain, neuropathy, prolapsed heart valve, hypertension, severe arthritis, osteonecrosis of the jaw, extreme fatigue and also restlessness. They said maybe you're depressed. No, I know depression and this is definitely not depression. I love life today just tired of being tired and feeling like i am walking through water up to my chest all the time. Weeks later they call and tell me I'm low on B12. I've taken it now for over a month and it's not helping. Don't get me wrong, I get up everyday at 6am and make a hot breakfast for my daughter that is still at home, watch my grandson, go to a spiritual meeting everyday, cook supper for at least 2 sometimes 4, and all that other stuff like cleaning house, laundry,etc. I only take 1 ibuprofen a day for the pain i have plus the BP med, CA med, penicillin for the ONJ and a couple vitamins, so i guess i shouldn't complain. It's just hard to imagine the rest of my life with all these problems that i didn't know about in the beginning of the chemo. I ask, didn't i have the right to know what could have happened? Dr. said, I didn't think you would be alive to be having these problems. WOW! Ok, thank you.

Hang in there and I will too. Thanks for letting me vent.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

WOW, WOW, WOW !!! I always knew they were THINKING that statement but I never actually heard a doctor had really said it. WOW. Were you never told about any of the possible side effects of the chemo drugs or radiation? I had treatments 20 years ago so hard to say if at some point during an exam or something some effects were mentioned, as it is a traumatic time and details blur occasionally, but I do remember when I was actually in the chemo room for my first treatment and the nurse started to read off side effects just before she started administering the chemo. Hmmm, nice timing. Clearly I am sure that even if I knew all the side effects I would have still probably gone for it, for my young family. I am positive that they didn't even know how some of the drugs would play out if we did live as long as we are these days so they literally don't know what to tell us now. That we would still be alive to ask the questions is true, that's why so many of us are coming forward now, because many treatments, like stem cell, have in fact worked TOO WELL. We have survived what our grandparents and parents wouldn't have if they had been diagnosed decades ago. This isn't about a blame game here it's about our right to know in the beginning, as some of us clearly didn't, and in experiencing these late effects now have the right to be treated with respect and care in all we are going through now. Many doctors won't acknowledge these 'late effects' and if you are a woman and alone - good luck in the appointments when you point them out. Why won't they acknowledge them? I guess your guess is as good as mine. Validation is what we need from our physicians, not the 'you should be grateful to be alive' or the many other phrases thrown at us by some when we talk about new symptoms and frustrating older ones that are plaguing us. We are survivors of horrendous treatments, in many cases, no different than the survivors of true War, we have waged a battle, a war, with our own bodies, a war in which loss of life is often the cost. We come out of battle with our bodies, broken sometimes forevermore, and where is the understanding and validation?

We ARE grateful to have been alive for the newest treatments that have allowed us to continue on this planet for longer than years before us, but there is a price to pay for the prolonged span of life and all we want is validation and understanding. I don't think that's too much to ask. Do you?

All the best with your late effects, you aren't alone there are many many of us who clearly understand and have been through it. There needs to be some honest dialogue between cancer patients and doctors and this is starting to happen. There are too many of us to ignore now, they are starting to listen. The other day I was in to see my doctor and she has been with me for many years and very supportive but even she had to say at one point in the conversation 'you know I am really seeing more and more of my long term cancer survivor patients with the same long term effects', in a puzzled way. Sheeesh, you think? Keep informing them, don't give up, you can bet that that same week they have had another long term survivor sitting in front of them describing the same symptoms you are having. Hopefully they will be as honest with you as my doctor was and validate you in the same way.

God Bless.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Hi again Ifly. Just wanted to mention that you are more than welcome to join this site's Chatroom that is open 24/7. In the room you will find all the validation you need to keep you feeling heard. From time to time there may be no one in the room but most times you will happen upon many caring people who totally understand where you are coming from. Hope to see you there.

noodlenose
Posts: 3
Joined: Oct 2008

I did "look around" for the chat room...but d'oh, can't find it. Or don't know how. Help? suggestions?
Hahaha, is this the swiss cheese talking or am I really missing something.
Thanks!

noodlenose
Posts: 3
Joined: Oct 2008

Found it!

noodlenose
Posts: 3
Joined: Oct 2008

Oh boy. I'm glad I found this site, and can read what all of you are saying. I'm barely a year out of treatment and, silly me, thought once it was over it was over. Well, it ain't.
Besides follow up dr. appointments, there are the lingering things...all stuff I have been thinking maybe I've been being a baby about....but no, apparently not. A brain like swiss cheese, achy joints, numb feet, weird toe infections, psych meds that used to work but don't any more. (and the joy of trying to find one that DOES)...Oh I have good days but when I am in the pits, I am really in the pits.
So, I need to take heart from you 20 year survivor folks. My husband calls me a survivor but I am still too scared to call myself one. Yes we are lucky to be alive, but it is about time that "they" (the medical establishment?) come clean with what can be expected afterward. It might be depressing, but I think its worse to think that once treatment is over everything is going to be "okay.".......??

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

It's true, it would be nice to have had all the info before treatments started about what to possibly expect but in my case and I know I have heard this from alot of other long term survivors as well, the doctors I am sure never expected us to last this long hence never thought about long term effects of treatments that far into the future. Maybe they did know, maybe they didn't but at the very least they could now, that we have survived the disease and are battling the late effects validate us in our reporting of the symptoms and treat us with the respect we deserve. Too many times getting older is blamed and we are steered to shrinks instead of them dealing with the symptoms and obvious links to treatment. But it's starting to happen, there are too many now like us who are all reporting the same types of symptoms, they have to listen now. My doctor actually said that to me not long ago with such surprise in her voice 'you know, I am seeing more and more of my cancer survivors with symptoms like yours'. To that I said 'Duh, ya think?'. Sheeesh. Anywho, it isn't over when it's over, we all know that now. Think though - if they did know what lay ahead for us long term (and maybe they did)would we have said no to the treatment? I don't think so but you are right, yes we indeed have the right to know, if they did themselves.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Just wanted to invite you to come and have a chat in the chatroom on this site with others who are going through, or have gone through, the cancer experience - both cancer surivors and caregivers. We have many members who drop by 24-7 to chat about their experiences and support others who may need it at any given moment. You will find like minded folks in there who truly understand what you have gone through and you will find the validation and caring that you deserve. Drop by, there is usually someone in the room and if not just wait a few minutes and someone will pop in. Evenings are usually the busiest and sometimes there are a few in in the mornings as well. Hope to see you there.

TomKel
Posts: 5
Joined: Sep 2008

My situation is very similar to yours. I too am just a year past treatment and not brave enough to call myself a survivor.
Naively I thought that if the cancer were cured, my life would be like it had been prior to detection. I do wish I'd been warned of possible effects of the chemo and radiation. It's not like I would have said, "No, I'll take my chances with lung cancer." After I'd finished my treatment, I was having severe acrophobia and started seeing a therapist. She thinks the combination of dealing with cancer and early retirement and seemingly taking it all in stride is manifesting itself in the fear of heights. Just reading these posts makes me realize that I'd dealing with a third fear. That is, are there other effects of treatment which are more severe and which will show up later. For example, will the neuropathy get so bad later that I can't walk? No one that treats me wants to talk about these things, and I'm being treated at Duke, supposedly one of the best cancer hospitals in the country.

Yes, I feel fortunate to be alive and appear to be cancer free. I just wish I'd known more about what it would be like post treatment.

This site has helped me so much. You are wonderful and understanding people to talk to.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I found your posting very interesting and actually have been told a similar thing by a therapist that a few anxieties can get together and form a phobia, sometimes but not always. I think the one thing that stood out to me about your posting though was that you are reading some of these late effects as some of us call them and are assuming that there might be more for you down the road as well, or that your neuropathy get so bad you might not be able to walk in time and I think that can be dangerous to assume that you will be like another survivor even if your symptoms are similar. It's best to read the boards and process them as added info but please don't assume this might happen to you because as I have said before what if no other medical side effects hit you or become worse and you look back after many years into the future and realize it was the FEAR of these things that wound up crippling you, not the actual side effects you feared would happen but never did. Know what I mean? I know it's natural to worry and wonder but let's face it we have enough right on our plates today to think about, please try not and project more that may never appear in the future. Yup there are alot of us with late effects but there are alot who have none or few.

I was told during my transplant that one person was up and playing tennis the week after transplant. Hmmm, that was a bit of a stretch and of course set up huge expectations for me. After 18 years out of transplant I am not fortunate to be one of those who was able to carry on with things and I still 'grrrr' when I think of the oncologist who set my sights soooooooooo high.

You also mentioned that your doctors don't want to talk about late effects and I wonder if it's because they simply don't know how it will all play out with you or anyone else for that matter. I think they are all shocked that we are around so long, us long term surivors, and as I said in previous posts that's a big grey area for them - the effects of all these harsh drugs and treatments so many years into the future. They know about long term effects well when it comes to children who were treated in their early development for cancer because the kids were still growing when they were hit with harsh treatments so that's different but if the drugs damage the human body period then you would think they would expect problems down the road. I sometimes wonder if they don't want to commit either for fear of blame from patients either, I really can only guess as we all just dont know why. I know that it wasnt til just recently that I finally had a cardiologist say that my heart damage was from one particular chemo drug, before that they just wouldn't say.

Like you said, you wouldnt have turned down treatment but I agree yes we have the right to know if at all possible.

Cancer treatment used to only be about saving lives but now that they have achieved that in spades we are the new frontier to be dealt with, okay you saved us, now what?

TomKel
Posts: 5
Joined: Sep 2008

It's not that I read that X has cardiac problems which are a result of chemo, so I'm afraid I'll have cardiac problems too. It's more like, "No one said anything about neuropathy, and I have that. No one said anything about swollen and achy joints, and I have those. What else, if anything, might be lurking in the future that the oncologists haven't mentioned?" Perhaps this is too subtle a distinction, but I see a difference. On the other hand, it's encouraging to read about neuropathy passing, even after a number of years.

I agree that the oncologists don't quite know what to do with us after they cure us. I feel mine are always glad to see me because I'm a success story, but they don't want to hear about other problems. My radiological oncologist is an exception, perhaps because he's sort of young and has not become jaded yet.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I know what you mean by the subtle difference and have felt that way myself. I guess all we can do is live for the day and hope the worst is behind us and if the day comes that things get worse, we will have to deal with it then. Living each day at a time still the best way to go but worry is a big side effect in itself of all of this as you well know, we can only try to keep busy and pray for the best. It would have been nice to know a lot more before it all started, that's for sure.

tasha_111's picture
tasha_111
Posts: 2042
Joined: Oct 2008

Hi Blueroses, how do i find the chat site? I am having some revolting side effects and would probably be in a better state if I could chat with someone who was honest about all this stuff (Unlike my Doctors) Thanks

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Just go to the main page for CSN and under the heading of 'Connect and Communicate' if you scroll down a few lines you will see CHATROOMS. Just click on that and wait til the room opens and that's it. Hope to see you there.

tasha_111's picture
tasha_111
Posts: 2042
Joined: Oct 2008

The chemo brain must be worst than I thought.............I Do Not Remember Writing this, But it is exactly what I was thinking about writing.............strange eh?

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