Going on 23 year survivor of NHL - considered cured

Patchwannabe said:

gosh darn side effects!
I am going on 27 this March, plus 7 and 2 years for my long term related "gifts"-
I noted how many on this chat mentioned dealing with long term effects, but chose to be happy about just being a survivor. This is great but I am curious if anyone needs to or wants to vent about these effects as we are the guinea pig generation of cancer survivors??? So what are some of your hated long term effects? mine are hearing loss, vision loss and having a manmade endocrine system.

Hey Patch
Actually that is one of my pet peeves, big one actually and that is pretending that survivors are happy all the time, that's not true or realistic. I mean we encourage positivity but no way are we happy all the time, side effects suck and they get us down - far down sometimes and it's totally important to feel that we can vent that too, it's reasonable to do so.

One correction though, we are not the only guinea pigs. There were whole other generations way before us who had even less of a chance, less understood than we are now and in 20 years to come those interventions will be looked at like guinea pigs for the next 20 years to come. Unless of course a cure if found for all cancers before then and I sure hope that will be the case.

Before my generation my GRandmother had NHL too, same type I did and there was not much they could do for her, that was about 40 years before I was diagnosed. Flash forward to 22 years ago and they were just introducting bone marrow transplants for NHL and started with stem cell transplants as well. When I started treatment 22 years ago there were also no truly effective anti nausea drugs even but by the time my cancer recurred 2 years later there was. I guess any disease out there uses us as guinea pigs in a manner of speaking but that's only because they are still in the process of finding cures and whatever they have that they find passes safety standards they try. We are usually given a choice to accept the treatments or not. Did doctors realize the long term reprocussions of any of our medications - hard to know - not til they have alot of data on long term survivors can they say.

I guess sometimes I think of myself as a lab rat but when I do, on most days I think of myself as a grateful lab rat. lol. But not everyday - some days it all just sucks.

I have a ton of long term effects of treatments but consider when you transplant was done, I know some of the procedures today are not used anymore because of too much collateral damage. Mine include: heart damage from adriamycin they think - severe artythmias that have led to the implantation of a pacemaker, aspects of PTSD from treatments and other situations during and after treatments, anxiety and panic attacks, respiratory damage from pneumonia brought on by treatments years ago,chronic pain in joints and all over really, nerve damage - fibromyalgia, early osteoarthritis from total body radiation, chronic fatigue, chemobrain (cognitive issues and memory issues from rads and some chemo drugs that crossed the blood-brain barrier, extreme tearing, cyclic hair thinning from traumas, dry skin, chronic infections, allergies to ct scan dye from too many cts (then they didn't think the rads from them were bad - I must have had hundreds of cts), dental issues starting up I think are related to treatments, now anaesthesia for any reason is difficult for me because of all the health issues - makes it more dangerous for any procedure that requires general anaesthesia so they are talking about giving me an epidural instead if the surgery will allow that. Trouble with toenails now as well. Am on morphine daily now due to arthritis of the lower back and disc degeneration. Being followed for cysts now developing gynaecologically, following it closely because of all of my past treatments.

Other than that, nothing much, lol.

I think I am forgetting something - chemobrain. lol.

You have every right to be upset and have bad days because of the side effects and yup it gets us down but the alternative isn't good either - not to be around to complain. lol. On this board no one should feel badly about talking about anything that bothers them about treatment. It's healing and we all share most of the issues.

I wish you all the best, one day at a time, sometimes one minute at a time eh?

Blessings,

Bluerose

Cyndy333 said:

Cured or In Remission
What is the difference between cured and in remission?

Hey Cyndy
Technically I think that 'in remission' is used when they find no active cancer and some use that term if they think that a cure still isn't possible, just long remissions. I have been deemed 'cured' by two oncologists now and it's because there has benn too long a remission and plus I have been in this long remission after the second round of NHL so they are safe in saying it is a cure this long afterwards. There is probably an even more technical reason for the word remission but that is what I was told. I have never used the word remission myself though because I didn't like the insinuation that if you say 'remission' you are saying to your body well it's just a matter of time til it comes back. But that was just my personal optimistic take on the word.

Take care.

Blessings,
Bluerose