Newly diagnosed~how to handle all the emotions

[dontwanttobehere]

Crazy how you hang on to hope. After scope I was told by the doc he was 99.5 % certain I had cancer. For 2 days I hung onto that 0.5%. The surgeon said he guessed >stage II but for the last 1.5 weeks we hoped for stage I not II. So yesterday, we learned it is through the colon and into 2/20 lymph nodes. He says the oncologist will most likely do a PET scan. I am guessing that is because I have a nodule on my lung and cysts on my livers. My hope is that the nodule is just a result of a terrible cough I had before that CT and I have read cysts can be very normal.

We left the office and I cried a good hard cry into my husbands shoulders. But then it is so weird that life keeps on going. It's like I don't know what to think or feel. I have only shared what's going on with our close friends, neighbors, and family so we did update them via email last night as they were all waiting that appointment. Our 2 youngest are 5 and 7 and with summer break just starting are looking forward to days of fun. Somehow yesterday I managed to blow bubbles, take a walk, play at the playground and watch High School Muscial (for the umpteenth time). But I just feel so hollow. Do you tell other friends now that you know more information? Do I try to forget it and not talk about it? We are invivted to a neighborhood pool party this weekend...do I talk about it or can I just forget about it?

Thought it might help if others shared how they kept getting through the first days and weeks. Does there become a new "normal"?

Strange but in a few short weeks I have come to this group to find support. Thankful to have found a thread that was like 30 pages long about stage III with NED for years...

[debb]

Hi..I'm so sorry you are going theough this, but as someone who has been there, done that, I hope I can offer support.
Go to your pool party and have a great time. Talk about with friends, if it feels right. Or just smile and say "I'm ok, let's talk about it another time." Enjoy the normal time you spend with your kids. They need it..and you need it.
If you haven't already, ask your doc for some kind of anti anxiety med. You can just take it when you need it or take it regularly. Having that tool in my pocket helped me so much.
It's hard not to worry about what's going to happen, I know. I've been in this battle since 2008. My youngest was 8 when I was diagnosed. A terrible time. But it's been many years and I'm still here. I feel the more normal I keep it for my kids, the more normal I feel.
Good luck to you!

[Annemiek]

Hi,
I'm still sort of in the same spot. We had a hard time half year ago when I was diagnosed and admitted to hospital and operated upon within two weeks. There was no time to worry then, but it hit me like a ton of bricks afterwards. I spend my time in hospital writing emails to people telling them the same story over and over again, it helped just repeating the story of what the f**k just happened to our nice comfortable life, I feel hollow and empty and struck by lightning at times as well.
A few weeks back my husband ask my oncologist for the dreaded question on survival rates ( I didn't want to know but he kept guessing so we agreed to ask. The onc looked up and said 30% . i smiled and said, oh so 30% chance of reoccurance? No, 30% chance of no reoccurance. Oh and survival rate? Also 30% chance that you make it 5 years. Glub. I left the room crying. I cried on the way home and cried a lot over the next few days but slowly daily life took over again. I decided (thanks to this lovely forum) that percentages are what they are and don't say anything about me or my body. It still creeps up and me when I'm awake at night during chemo and I get so depressed.
But yesterday and today I went shopping with my girl (5), we went for pizza and I brought her to school by bike and swimming class and felt fine, she loves it when we do the normal stuff, in between the chemo sick days. I have learned so much from her, she takes everything at face value it seems, accepts what comes along and doesn't look ahead to the future ( except her birthday which can't come fast enough)
If you feel like telling people, tell them, if you don't, it's equally okay to not tell and enjoy a normal evening, being normal. You might want to tell people some other time as they will find out eventually when you go through procedures and chemo and you can use all the support there is by then!
I love it when people like Debb reply, it gives hope for us all!
Annemiek

[rwightman]

I think everyone has to do what is the most comfortable for them. I personally, did not want to tell the general pubic. I told close friends and family. Word filtered out a bit, but I totally downplayed it. Really only my closest friends know what is going on. For me, it helps to try to live each day as normally as possible. Not only for me but for my kids. I didn't want 10 phone calls a day of people asking me questions and making cancer the subject of every conversation. I have it, I don't need to dwell on it. So far in my 8 month journey through two surgeries and 5 rounds of chemo, no one is the wiser - not even at work. (I told my bosses only). For me, it works! I have an uncanny way of pushing things to the back of my brain and not bringing them to the front until I have to, so I manage to really only dwell on the cancer during scan times and surgery. This may totally change if my disease takes another turn, but I'll deal that when the time comes.

The whole things sucks and your kids are small so they can't really understand what is going on. I am sorry you are here with us! It is so hard knowing you have a terminal disease when you feel 100% normal and not sick. At least that is how I feel - it is so surreal that you wonder if they got it all wrong, but sadly, they didn't.

[PainInTheAss]

So sorry you're going through all this.

I think it really depends on your personality and your friends on who and when to tell what. Non cancer patients can be insensitive or awkward, but great friends can be really supportive. There have been several patients who started blogs and just had friends and family check the blog to see what the latest news was. That maybe a way to keep a large pool of family and friends updated with general information and allow only closest friends to talk to you face to face about it. Just make it a rule to check the blog and don't bring anything up unless you do. It can be really great to get an outpouring of support from people who care about you. I just emailed updates and cc'd whoever I was notifying. It is weird for someone to know you have cancer and you never told them yourself, but you would have to keep it a complete secret in order to prevent that from happening. It just depends if you are a private person or if you like "talking through" problems with your support system.

[PainInTheAss]

Hi,
I'm still sort of in the same spot. We had a hard time half year ago when I was diagnosed and admitted to hospital and operated upon within two weeks. There was no time to worry then, but it hit me like a ton of bricks afterwards. I spend my time in hospital writing emails to people telling them the same story over and over again, it helped just repeating the story of what the f**k just happened to our nice comfortable life, I feel hollow and empty and struck by lightning at times as well.
A few weeks back my husband ask my oncologist for the dreaded question on survival rates ( I didn't want to know but he kept guessing so we agreed to ask. The onc looked up and said 30% . i smiled and said, oh so 30% chance of reoccurance? No, 30% chance of no reoccurance. Oh and survival rate? Also 30% chance that you make it 5 years. Glub. I left the room crying. I cried on the way home and cried a lot over the next few days but slowly daily life took over again. I decided (thanks to this lovely forum) that percentages are what they are and don't say anything about me or my body. It still creeps up and me when I'm awake at night during chemo and I get so depressed.
But yesterday and today I went shopping with my girl (5), we went for pizza and I brought her to school by bike and swimming class and felt fine, she loves it when we do the normal stuff, in between the chemo sick days. I have learned so much from her, she takes everything at face value it seems, accepts what comes along and doesn't look ahead to the future ( except her birthday which can't come fast enough)
If you feel like telling people, tell them, if you don't, it's equally okay to not tell and enjoy a normal evening, being normal. You might want to tell people some other time as they will find out eventually when you go through procedures and chemo and you can use all the support there is by then!
I love it when people like Debb reply, it gives hope for us all!
Annemiek

I know. The stats for IIIc are pretty dismal. Seems like IIIb even are way higher. Seer has only 25% for colon and 33% for recital non recurrence rate for IIIc. My onc told me that with chemo it raises that to 60%, but I know that many seer patients are getting chemo. I decided to just believe him and I felt so much better. Stats can really hang over you like a dark cloud. I decided that I'd rather be wrong than miserable and believe I have a good chance of a cure (until I find out otherwise).

I noticed in your signature that you had Hipec. Was something found after diagnosis and treatment? Did this affect the stats he told you or was the stats conversation at diagnosis?

[Annemiek]

Nothing was found during surgery and Hipec in my abdomen and they told me they looked long and hard the hospital I had the surgery in claims 70% 5 year survival for 3c, very confusing.

The stats the onc in my hometown hospital told me a couple of week ago didn't include the Hipec or the hysterectomy, but he did say it was including chemo ( that's opposit to what your onc says, I like him better already). I am confused but can't get myself to ask again, what purpose does it serve if they don't know..

We decided it's going to be 50%, which I can sort of live with. No, with which I will certainly live with!

Annemiek

[horizon]

Stage 3 here. Been there done that.

I only told my family, close friends, and a few co-workers. It was emotionally exhausting each time I had tell people so I wanted to minimize that. Plus I wanted people to keep treating me like they had been. That's just how I was.

Waiting for test results is just the worst. Don't let your mind run through the worst case scenarios. Everything good/bad that happened to me was something I couldn't have predicted. For quite while my biggest fear was that something would happen to me and my youngest relatives wouldn't remember me. Now I'm daring to think I'll be able to spoil them rotten as they grow up. Once you have the facts and a treatment plan in front of you it made things a little easier for me because I could just concentrate on getting through those.

[Sleen]

I'm sorry this happened to you.

My method of dealing with the whole mess was to Tell Everyone. I sent email updates (blast-o-grams) to keep family and friends current about my treatment, and asking them for prayer. Keeping everyone informed has also meant that I'm not repeating the same information over and over, which can be overwhelming in its own right.

It is MORE THAN OK to go on as if everything is normal. I hung onto every scrap of normal that I could in the beginning. Things changed so fast that I didn't think anything would ever be normal again. I am now blogging about my diagnosis and treatment (see sig).

For me: pray. write. don't worry.

I'm glad you found this place! but of course, sorry for the reason.

Celine

[momof3]

I think hanging onto hope is always a good thing!

Sorry about your diagnosis. I can understand not telling the whole world, but for me it felt so uncomfortable and still does when someone asks how it's going, Etc . I felt weird saying fine and you. I kind of dreaded seeing people and still do at times.

The nice thing about telling people is you may find some support that you will need. You may be surprised at the folks that are there for you. I found it's not usually the ones that you would expect.

Good luck to you.

[KWT]

The first couple months are tough. But they will get better do whatever you have to to keep cancer out of your head as much as possible.one way I do that is don't mention my little problem with most people it avoids a lot of cancer talk, I do that here where people get it.

[klee81]

I'm sorry you are going through this. You should tell whoever you feel comfortable telling and definitely try to keep it normal. My son was almost 8 years old and my daughter was 8 months old when I was diagnosed last year. I too had a spot on my lung which ended up being benign...I did luck out except for the permanent colostomy since my tumor was super low in the rectum. You should definitely remain hopeful, there is always hope

[jeffrc5890]

I basically told close friends and family only immediately after diagnosis. I wanted to wait for the diagnostic info. Since then I have asked people to tell others as they feel they should, left it up to them. I specifically told them no Facebook as I didn't want a huge onslaught of e-mails and phone calls.

[Maggie Nell]

As for handling the emotions. I have always liked the words of Rumi -

This being human is a guest house.
Every morning a new arrival.
A joy, a depression, a meanness,
some momentary awareness comes
as an unexpected visitor.

Welcome and entertain them all!
Even if they are a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still, treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice.
meet them at the door laughing and invite them in.

Be grateful for whatever comes.
because each has been sent
as a guide from beyond.

[j'swife]

I recognize our solutions ad experience in every response to your post. Seems they are all valid and complement each other depending on the situation,what day it is, and your mood at a given time. I'm a 20 year breast cancer survivor [stage ii]and my husband is the CC patient [stage iv, now NED]. We learned that when you do tell people who are not your closest loved ones, it is important to have a 'presentation' that lets them know how you want them to react. What you DONT need is to deal with the fears, embarrassment or other feelings of people you like, work and socialize with. There is more than enough emotion sweeping up 'those you realy love. Our ' presentations' were along the lines of 'Turns out I have cancer and that it will take x amount of time off and chemo and surgery - but I have great doctors and I'm trying not to be pessimistic. So many with this same cancer are doing so well thse days etc" If you trust their cooking or driving you can add "I'm just hoping for a lot of good casseroles or 'a lot of carpool help to get little Aloycius to soccer practice " or whatever you really need [seriously- the car pools that formed to take my little ones to their sports 20 years ago were the greatest blessing!]
There wasa time when we decided I should just say said about my husband that ' he's dealing with some heath issues and seeing a lot of doctors, so we're overbooked and stresse, but it will allwork out, while he decided when to ell people and what. Later it became unavoidably clear.
We also learned from friends who are pediatric oncologists that kids think cancer may be catching but know it sounds selfish to ask. So tell them outright it's not. And acting confident is pretty important - acting being the key word.
Our daily coping mechanism was to keep as busy with regular duties as possible and to enjoy the effort as a necessary alternative to the terror. Life feels like a net of people and duties kind of pulls you along and wont let you stop... which, of course, is kind of the point of our hopes- we have to pause for treament and healing and terror - but hope never to actually stop. So many colliding realities when we aware of everything ... it is exhausting of course.

Wishing you the strength!
Meg