I'm always talking about secondary effects. You might be asking what exactly is that? Its different for each cancer fighter. They are the effects of our treatments, not the cancer itself. Chemo, radiation, medications, surgeries etc...may cure us or stop the cancer from progressing but they do their own damage.
Cancer patients often have a love hate relationship with their treatments. On one hand the treatment may save our lives but on the other hand they do a doozy on our bodies too. Everyone is aware of Chemo causing people to throw up and radiation causing burns but there's more.
For me my radiation has left me with many problems. My bladder is burnt and so I am in constant pain in that "area". Going to the bathroom is always painful. When I get the urge to pee I have to go that minute, no holding it for me. Digesting food is also extremely painful. There are many foods I can no longer eat because my digestive system was burnt from radiation.
Chemo left me with occassional ringing in my ears. Its not all the time but when it comes its extremely frustrating. For a while the Chemo also left me with what is called "chemo fog". I did not lose my hair but Chemo definitely made me extremely sick while I was getting treatments.
Its important for people to understand that even though treatment may be over the cancer fighter still fights. The cancer may be gone but many times the treatments that saved our lives still leave us with battles.
If you are a cancer survivor and have your own secondary effects please leave a post sharing them. We need to tell the world so they understand what it is like for us!
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20 comments:
My dad survived cancer in the mid 80's, but died from the secondary effects of chemo four years later.
By now they have refined treatments to hopefully prevent this from happening...
My digestive system is still not up to par from the chemo. I cannpt stretch myleft arm up and over my head from radiation. The side effects fro the tamoxofin were so vaied and severe, that I opted out.
i work in a pediatric cancer clinic- it's amazing how much people don't know until you'r eon the inside of things. you are so brave and wonderful to start this blog to help educate people, and to make them feel they are not alone in a very lonely time. thank you!
I have much of the same issues.
For 5 months post-treatment I was able to eat again. Then BAM! one day I started having horrible cramping. Over the next few months I was losing an average of 2-4 pounds a week. They determined it was a bowel obstruction due to radiation. Part of my small intestine was becoming adhered to my pelvic wall.
We tried managing this issue with diet, but it was incredibly limited. No dairy, no fiber, no fresh fruits or veggies, no grease, nothing fried. I was back to living off of boiled chicken, rice, and bread. 4 months later I was admitted into the hospital, for another surgery. This was to remove the damaged portion or intestine. I had lost a total of 37 pounds.
That surgery kicked off another set of issues. My bladder freaked out and I was losing control almost every night. The urologist said it was scarred by the radiation and the 2nd surgery had basically "pushed things over the edge".
I still can't eat normally. I should buy stock in Gatorade and Pepto! Very rarely do I eat out, actually I've eaten out maybe 5 times in the past 2.5 years. Any time I leave the house I have to know where all bathrooms are...just in case.
There's still some issues with neuropathy from the chemo, along with frequent dizzy spells. And my newest issue is Lymphedema, also from the radiation and lymphnode removal. Treatments saved my life, but man did they take a toll on my body!
Wow you deserve a pat on the back for getting out of bed every day! I experienced many of the same symptoms but within a year and a half things started getting back to normal, just now that is! I am so so sorry it continues for you!!
Thank you for sharing. Its important that people understand that the battle does not end when the cancer is gone!
Oh my gosh. You're so brave. I'm totally humbled.
I wanted to share something I use to help me with digestion. I don't know if they might help you but it can't hurt to mention, right? I use "super digestive enzymes" from GNC (they might push you over to other stuff but stick w/ the "super digestive enzymes" - that's the name. They're capsules and I've gone from not being to digest much at all to barely ever having any issues. Those and aloe vera have helped me tons.
My issue is hereditary and not due to secondary effects however but hopefully it might help.
You know, most people never even consider all the effects that come with the treatments....more than cancer to have to overcome. I think its wonderful that you have enlightened us more. My father-in-law had a VERY painful time with radiation when he had prostate cancer. :(
Oh and girl...I am LOVING that profile photo. You are SMASHINGLY FABULOUSLY GORGEOUS!!! :) Inside and out!
~melody~
I'm an 11yr survivor non hodgkins lymphoma/blood cancer.
My last treatment was a clinical trial in 2001. I also had radiation to the posterior right side of head.
It really knocked me silly for sometime.
For me due to having treatment three different times 2001 being the last time. I have bone issues due to predisone/steroids. My b cell antibodies are starting to show problems being low and high risk of infection. Something recent.Expecting infusions if that continues to be an issue.
I also have the digestive issues from the chemo. Which just don't seem to get better. I to have to be around a rest room and know where they are at due to those and bowel issues.
I also have toasted thyroid. That I am now medicated for. I think for me the hardest thing was the problems of my orginal head and neck surgery then the radiation. I can't be in the sun for long periods it makes me physically sick and that is tough when you don't want to miss things.Then there are the constant dental issue and eating issues as well.
I think all cancer patients deal with secondary or long term issues but they really don't talk much about it. I think we should and it will teach and help others understand. I keep hearing but you look great. So there is an assumption that comes with that things are great not always so when it comes form cancer.
Love your blog and yes others need to know.
thank you for this blog! My grandmother recently died of breast cancer and I am a big supporter. I look forward to learning more from you.
I had chemo, external and internal radiation treatments for cervical cancer and about a year after my last treatment, I developed radiation proctitis. I have minor anal bleeding upon defecation and I'll need to get that taken care of when I go for a colonoscopy (ugh!).
Like some others who have already commented, I have "toilet issues" in the morning, and have to hang around the house for at least 1.5 hours before I feel safe to do anything. There have been a couple of other times when I went out to eat and the food went right through me.....it was very upsetting. Although things are not ideal, I'm fortunate in that I can pretty much do whatever I did prior to being treated for cervical cancer, just as little bit more carefully.
Recently my geno oncologist gave me the "Cancer Free" speech.. but.. I'm spotting and passing blood clots and when I told him that and he looked vaginally he didn't seem to merit that that was anything wrong. Told me that it can be expected after internal radiation which I had (but ended) in April. I know this is off topic to your post... but ANYONE - plz.. so do I keep pushing this as an issue. He's already scheduling a PetCT (sp?) Scan that's suppose to assure me that he's right, that there's nothing to worry about. Little history: diagnosied with uterine and cervical cancer. Hysto w/removal of ovaries and tissue up to bladder w/relocation of bladder. Chemo and radation (external and internal) from Feb to April 5 days a week. I'm.... scared.. I got a one year old and a 15 year old.. just got married... can anyone offer me some info please????? Again sorry to make this so off topic.
I had the same issue and it freaked me out too. I had 3b cervical cancer. My treatment was chemo and radiation. One day, a couple months after treatment ended, I went to a friends house. All of a sudden I felt soaked and looked down to find tons of blood. Needless to say I freaked out!
I called the doctors and we scheduled a PET and exam. Like you they said it was not a big deal, and they were right.
What happens is the radiation creates scar tissue. if you have sex or bother the area at all it can break the scar tissue (this is a good thing) and that leads to bleeding.
when you have had cervical cancer and then radiation your vagina can close up from scar tissue. this means you have to use this awful dildo type thing to keep the area open or have sex. You want to break up the scar tissue but it does lead to bleeding.
Definitely get it checked out but I wouldn't panic. If you want to email me feel free: megse5@netscape.net
Whew! I am so glad to read these comments! I don't belong to any support groups, so I thought I was the only one w/ digestive and bathroom "issues"!
I had stage 2 Hodgkin's lymphoma, diagnosed in 2003. It came back twice and I have had 2 bone marrow transplants. The second one worked, and it's been 2 years free of cancer. The first 6 months of that were great, as were the first 3 years of cancer. Very little problems, didn't miss work, etc. Now I have chronic Graft vs. Host Disease, which was barely mentioned prior to transplant, but can basically shut down having a real life, and even kill you. I am on huge doses of prednisone to control it, since there is no cure except time. We all know that prednisone brings it's own awful side effects. So it's all a big domino effect. I agree that we should talk about this more so people understand it.
I find that after 5 years, since I am still alive, people assume I am OK, when right now I feel, look and sound/breathe the worst I've ever been. But since I can't go anywhere (I have no immune system.) and the rest of the world is busy w/ their lives, few people see me.
Oh wow I had no idea about the side affects! :( XOXO
I am not a member of a support group but have found that creating this blog and then connecting with so many wonderful people has provided me with more support than I could ever imagine!
-Meaghan
I haven't fought cancer, but my grandmother is a breast cancer survivor. She completed her radiation treatments almost two years ago and she's always complaining of being exhausted and just not feeling well. She can't tell us what hurts, but she just doesn't feel good. We are all worried that maybe it's depression and she's not being completely honest with her doctors because they say they can't treat her if they don't know the problem. Anyway, it's frustrating for the entire family and I know that she is so tired of being tired.
thanks so much for visiting our blog...what an amazing story you have to tell...i am so happy that you on your way to getting strong and healthy.
i to know this journey as a caregiver to my mother who lost her battle to cancer. but I know of the chemo fog and radiation issues that you talk of. i think my mom had a harder time dealing with the radiation...
it is so great to get the word out so everyone has a better understanding of what cancer and the treatments are all about.
Thank you for this blog. Kudos to you for being bright, brave and beautiful!
Well let me add my 1000 cents worth.
I was diagnosed with stage 2 cervical cancer and stage 3b breast cancer April 2007.
Got the mastectomy and they had to remove 6 lymph nodes. Then went through chemo for the cervical cancer and radiation for both the cervix and breast areas.
I was one sick puppy.
Now I am in remission! Yay! But like many of you...still dealing with many side effects.
I have a kink in my ureter, I hemorraghed and had to get a UAE Uterine Arterial Embolization.
I have developed lymphedema in my arm. Got it under control.
Had to use the vajajay stretcher thingy and now....I'm having problems with the other end. It hurts to poop. (I figure TMI is ok here :) )
Now I have spot on my liver, but they don't think it's cancer. We are going to wait another three months and then scan again and see what's going on with it.
I don't normally cuss, but ther is no other way to say this: cancer is a bitch.
I'm grateful to be in remission, but it really is hard for others to understand that I'm still dealing with it despite being in remission.
Whew. Thanks for listeining.
I'm grateful there is a blog like this that I can vent.
BTW, I am 45 years young. Not as young as you Meaghan, but still.... I'd like to stick around for a more than a few years, ya know?
i have never had cancer, but i am a nurse and i used to work in oncology.
you are an inspiration!
congratulations on completing your chemo and kicking cancer's ass! as someone who has administered a lot of chemo, i know its very hard for the patient.
secondary effects definitely suck, but you're strong and you'll be just fine...
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