Possible Third Diagnoses

[beckbeckbobeck]

Hello all. So, this is my first time posting here or to anything like this. In 2016, I was diagnosed with Stage IV colon cancer. Emergency surgery was performed, a colostomy bag was created, I was in a medically induced coma for 7 days, I woke up, went home, started chemo. After all of that I thought I was doing okay. All I had to do was finish my chemo and then they would take down my colostomy and I would begin Avastin once I was all healed up. Welcome to 2017. During my reconnect surgery more cancer was found. Hello ileostomy bag and even more chemo. Okay. I can deal. I finish this round of chemo and then I go in for the ileostomy take down. The surgeon found no new cancer. I went back to the oncologist and she scheduled a PET scan before she started me back on my Avastin. Well it would appear now that there is a 9cm mass hidden behind my uterus and cervix. The tumor marker test for colon cancer that was performed was pretty high and I just had the mass biopsied (2/12/19). Now I am in hurry up and wait mode.

I just don't know how to handle a third diagnoses. Sometimes it feels like I can't get a leg up. I don't even know why I'm writing this but... I have a lot of support at home. People who love and care about me but... They just don't get it. They've never had cancer, they've never had to go through all of this. And they can be sympathetic but can't really be empathetic.

And it makes me feel awful when sometimes I just want to scream if I hear another "You'll be okay" or "You're so brave" or "You're strong" I appreciate it, I really do and I feel terrible that I feel like this sometimes.

Anyways, I guess I said all of that to ask -- Any advice on how to cope with this?

Beck

[KimT]

I can empathize with how you are feeling. In a span of 18 months, I was diagnosed with colon cancer, Lynch syndrome, and ovarian cancer. 4 abdominal surgeries and lots of chemo.

It scares people when someone they love or know gets cancer. All those positive comments are more for them. I had a lot of support from my family and I heard similar things. I wish someone would have been willing to talk to me about the things I was afraid of. I got sick of being strong for other people.

When my mom was diagnosed with leukemia, I made sure to be open to discuss anything she wanted. And she needed that. She needed someone to talk to about hard things. She knew she didn’t have to be brave for me. We could talk about how much it sucked. I felt that it was a blessing of sorts to have gone through all I had, because I knew what she needed.

I won’t give you another hang in there. But know this is a good place to vent and let your guard down. Every one of us knows the devastation of hearing bad news.

[Nordy1]

Hi Beckbeckbobeck and KimT

We could talk about how much it sucked. I felt that it was a blessing of sorts to have gone through all I had, because I knew what she needed.

.[/quote]

This all resonates with me so much. The positive statements, while made with loving intentions, can be so hard to smile through at certain times through this process. My journey didnt start with me, it started with my little granddaughter who was diagnosed with late stage leukemia almost 3 years ago when she was just 2 yrs old. I prayed every night - God and I were always ambiguous about each other and still are not on solid ground, but I certainly learned to pray. I prayed and bargained with him every night, asking if I could please take her place. 2 years later I was diagnosed with colon cancer and started down a similar path as my granddaughter and it was so heart warming to see her respond to all of it. She would look at my Ivad scar and my medical stuff, snuggle in my lap and tell me in her own words about her medical stuff in a way she never really did before, we could even be sad together and it was OK. We shared the same Ivad and she told everyone she saw, if I was with her when she was telling someone new she would insist on both of us physically showing the person our port scars (I kept my shirt on )

I am so grateful to share this with her, I've tried to explain a couple times to well intentioned friends or family that its really OK to speak honestly. That they are scared, that they don't know what to say, to cry even because none of us know where this is going to lead us in the end. We all feel that sometimes and its OK, but I also feel like I can be a better mother and grandmother because of this.

take care of yourself,
Nordy1

[beckbeckbobeck]

KimT and Nordy1,

It's so great to read responses from people who "get it." There are cancer support groups in my area but on top of the cancer I've got anxiety, so groups of strangers are not my forte. It s nice to have a sympathetic ear though. Like I said before, I don't want to seem like I am whining, I just sometimes need to vent and not hear "it'll be okay."

Nordy1, I hate to hear about both yours and your granddaughter's struggles but am so very glad that you have each other to talk to and empathize with. And KimT, I also hate to hear about you and your mom but am so glad you both were able to be there for one another.

Thanks for the support guys. I can't help but feel like I'm gonna need it in the upcoming weeks.

Beck

[Pyro]

I think maybe you’re looking at it wrong, your title and how your structured your questions are completely different than how I look at it. It’s a lifelong disease, there was one diagnosis and you just haven’t kicked it yet, but you will. I find it’s too much emotion to think I’m cured every time I have a good scan, and unfortunately, I’ve been wrong every time. I’m not doing an end zone dance until 5 years, much like how the cancer community doesn’t call you cured until NED for 5 years. To each their own.

[AppleTree]

I was devastated to be diagnosed. But I have fought every step of the way. And here I am...Stage IV to NED. Not that everything is rosy. It is not. I am having an extremely long recovery. I struggle to keep my weight above 102 so I can have the energy to have fun with my son. Screens now hurt my eyes. Tonight I have an infection where I got a shot 8 days ago. There are always challenges. But life and living too. Every day I am here for my somewhat grumpy teenager, I am thankful. I am thankful that he is still too young for a driver's license and I get to drive him everywhere. I consider it a priviledge. Last year I was deep into chemo and not driving.

I had rectal cancer and it came back into my lungs. I am prepared should it come back again. If it does. I feel it will be much earlier because of my screening. Or maybe it will never come back. But everyday I find something wonderful about my day, even if the day itself was not. Sometimes the best I can come up with is a new flavored seltzer water. Or today...something truly wonderful, I got to see a new grand niece 11 hours after she was born! Not wonderful why I was at the hospital in the 1st place, but that is beside the point. And every single, extra day that I am given with my son, to help prepare him for adulthood, gives me such a sense of contentment and a feeling of being lucky to still be here to guide him.

People are generally well intentioned. So, I smile and thank them. At least they are trying. And then there are those that are just noisy and gossipy. Ugh. I just tell them I am following the regime my dr recommended, and yes. I did get a 2nd option. To me. it is hardest to face those who tell me chemotherapy is poisonous and I should go to India, stand on my head and drink yay milk...they heard that was a good cure (or something like that). For these people I say what my Mom always said..."Really?" in a tone 1/2 questioning, 1/2 amazement.

You will get through...but I totally understand the feedback you are getting. It is not always easy.

[Jolene]

HI beck - Thank goodness for this board as it at least serves as an outlet for me to vent all those thoughts that you have just posted ! Come on here often and perhaps you might feel "less alone" ! It works for me. Not that I'm all a happy bunny now but knowing there are others out there like ourselves makes it a less lonely path.

I was like you a few weeks back and even created a thread separately on how I felt really bad for feeling the way I am feeling due to the pressure and obligation to stay positive and okay for others around me. This was before I approached anyone for help. I eventually went to a counselor who helped me sort out some thoughts. A couple of tips that she provided ..

- Reflect on the last adversity I experienced and how I overcame that with internal strength (not external support). Identify that strength and apply onto this situation. She briefly mentioned that the fact I took the initiative to look for counselling is strength itself

I came to the conclusion one of my strength is not being afraid to ask for help when I needed it, and decided that it is what will get me through this. I hope you find yours at some point. We all have different internal strength and if possible, try to identity it.

I also came to the conclusion that I do not want to pretend to stay positive or happy when I am not. I had a tiff with my husband to stop telling me to be positive because if I could I would have done so by now and need no one telling me that so it's futile saying words like that. I also told him to just let me be upset, get frustrated and get pissed off and I ain't gonna feel positive a single bit just someone he tells me so. He agreed to it. I decided that surely I have the right to get angry and frustrated freely and not have to stay positive for anyone else just because I am "suppose to".

One of my main aim in getting counselling is to help control my frustration against my husband who has unfortunately become an easy target. He has been nothing but supportive and I am trying to curb my frustration when i'm around with him.

[boxhill]

It can get frustrating, can't it?

I have been like the poster child for staying positive. Yet when people congratulated me on a clear CT scan after finishing chemo, if I responded by saying "Thanks, but I'm going to have a liver MRI in December and that should tell us whether anything is really going on," their response was likely to be dismissive and admonish me to "think positive." I'd say "I *am* positive, but I am also realistic." I think that got through.

In the middle of January I suddenly started having TIAs when standing from a sitting position, and to make a long story short found that I have a stenosis in the right middle cerebral artery. I'm going to have a cerebral angioplasty on Friday the 22nd. Stage 4 colon cancer I could deal with. This has knocked me for a loop. I've joked to a few people that it seems as if things are competing to see which can kill me first, but yeah. I'm hoping to live through the procedure with an undamaged brain. I've only told a few friends about it.

[Stewsbetty]

If I were you I would definitely look for someone locally going through cancer to connect with. I have a very good friend with a different form of cancer and we can have real conversations that are impossible with others. Maybe just show up to one or two support meeting and see if there is someone you can connect with one on one.

“Healthy” people don’t generally want to have conversations about death. And someone who has done chemo understands that when you are complaining and grousing about it,that you are happy to be alive and you probably will keep on but you just need to an outlet.

Hope you find someone to vent/commiserate/connect with and the strength to be gracious with the positive “healthy” people.

Beth

[ginabeewell]

I think the suggestion to find another patient to connect with is a good one. I've had a few people that I've come into contact with who understand the venting. At one point I was complaining about my Vectibix rash and my mother-in-law blew it off, like, "Oh but that will go away."

Yes, but it's HERE NOW and it SUCKS!

I also remember years ago when I was going through infertility treatments and a counselor told me that when there's nobody to blame, an automatic reflex is to blame your spouse. It's very natural but important to understand so you can catch yourself doing it. You are right to be concerned. And my caretaker does a bad job taking care of himself - so I really can't afford to take anything out on him (but sometimes I do).

[beckbeckbobeck]

Jolene,

Working on asking for help is my biggest goal right now. For some reason I have it in my head that I need to not show weakness to my friends and family and it is a hard mindset to break out of. I want to learn to have my bad days and not try to cover them up. If it's not gonna be a good day I don't wanna tire myself out trying to make everyone around me think that it is.

Beck

I came to the conclusion one of my strength is not being afraid to ask for help when I needed it, and decided that it is what will get me through this. I hope you find yours at some point. We all have different internal strength and if possible, try to identity it.
I also came to the conclusion that I do not want to pretend to stay positive or happy when I am not.

[Jolene]

Jolene,

Working on asking for help is my biggest goal right now. For some reason I have it in my head that I need to not show weakness to my friends and family and it is a hard mindset to break out of. I want to learn to have my bad days and not try to cover them up. If it's not gonna be a good day I don't wanna tire myself out trying to make everyone around me think that it is.

I have come to realise that the ability to admit I needed understanding, emotional support and counselling has been most liberating for me. I am happy to talk through the situation with friends and family these days. I hope you find your path soon !

[beckbeckbobeck]

Well, biopsy results are in. The colon cancer is back. This time it is in my uterus, which according to both of my oncologists is pretty rare. A surgery is being scheduled for mid-March, in which they will remove the mass and give me a full hysterectomy. They've sent the biopsy sample for "karas" (sp?) testing so they can determine which chemo will best treat me. Then it's time for round three.

Beck

[Nordy1]

Hi Beck

I’m so sorry to hear the news of your relapse, sending you positive thoughts and wishing you all the best.

Nordy1