Coping w other's cancer when you've had it/in it yourself

ChemicalWorld

Not sure if the title makes sense.  I've now started this thread a few times as a result of my own experience coping (or should I say not coping) with my father's cancer, as well as to a lesser degree, experiences with friends or loved ones going through testing.  I figured I'd open the discussion wide. 

My father was diagnosed with an inoperable lung tumor in 2009 and chemo was not an option then due to kidney issues.  He did 6 weeks of intense radiation and held his own cancer-wise for a remarkably long time.  In 2010, around the same timeframes too, I was diagnosed with breast cancer at age 40. 

I don't live close to my family and chose to go through surgery and chemo alone as one sick person in a household is enough in many regards.  Not sure I did myself any favors that way.  I had also kept my lump discovery and subsequent testing from my family until I was diagnosed.  Felt a lot of guilt piling on more.  I finished active treatment in 2011, and continue to keep a lot to myself.  I returned to work last summer/fall.

Dad had no further active treatment but was in and out of hospital a few times the past couple of years.  This past fall Dad's tumor progressed to a degree that they had started to look at other treatment options, and a light dose chemo was started.  He went through almost three rounds of gemcarbo before illness interfered, but scans around that time showed a 50% reduction in tumor size, which we were all so grateful for.  It did not however hold, and the tumor's acting up again. He is now starting Taxotere, which I reacted badly to and frankly it terrifies me, but I so hope it works for him and that he tolerates it ok, including psychologically.  He tolerated the last one in some respects and not so good in others.

My ability to handle stuff has been seriously compromised since I went through treatment myself, and ability to cope with anything cancer-related is almost non-existant.  I live alone, don't see friends a whole lot, and live away from family (but do visit several times a year and constant phone contact).  I feel like i'm ready to lose my mind right now and the past couple of years I feel like I can't see the forest for the cancer, for lack of a better way to describe it.  

With regards to testing, I get both personal scanxiety and vicarious scanxiety (and this includes friends and loved ones going through routine testing)

It is a unique experience not being the only person in an immediate family with cancer, so I'd like to know how this affects others if you're going through it or have gone through it, both the positives and the negatives. 

Beckers

Chemical world, my heart goes out to you. I found out about the possible BC the day before leaving to drive half way across US because my father was diagnosed with cancer and had weeks to months to live. Ended up being only 2 weeks. Like you, I intended to keep it secret and have treatment once I got back home, however, I had to stay (long story having to do with my job). It was extremely difficult putting this on my family right after my father died.



I don't know what's it's like to have the vicarious scanxiety given his death happened so fast. It sounds like a form of PTSD honestly. I think talk therapy might help keep it all in perspective. I have a friend who became agoraphobic after cancer treatments and had to get talk therapy to overcome anxiety. Good news is it worked and she is fine now in that regard. It is all very traumatizing and takes a lot out of us for sure. Hang in there! (hug).



Rebecca

Racy

I definitely recommend psychological counselling, especially if you are on your own. You need a counsellor who is experienced with cancer. Ask your doctor for a referral or contact your local cancer society.

jgbartlett

My father was diagnosed with bowel cancer in 2006 and after a long period of treatment he was told he was in remission. In 2009 they found recurrent cancer in his lung, he had surgery & chemo and was again told he was in remission.

In May 2011 I was diagnosed and my family was supporting me through surgery & chemo when he was diagnosed again with cancer in the lung. He is stage IV and surgery is no longer an option.

In Nov 2011 we went through radiation together. We had a double booking, were a father & daughter team, and supported each other through it.

Now I'm in remission and he will be on chemo for the rest of his life. I'm petrified that I'll lose him and then end up the same.

Just wanted to let you know you're not alone. I asked him if I could go to some appointments with him, it helps me to hear his diagnosis first hand, and ask questions of his onc.

I find i can talk to him about things I can't with other family, this experience has bought us a lot closer, and I will be devastated when I lose him.

My advise is to talk to him about how you feel, you've been through the same emotional roller coaster and have a very unique bond.

Feel free to PM me if you want.

Julie

christina0001

I can relate a bit. I can't stand hearing about other people's cancer. It terrifies me. Especially if it is late-stage/terminal. I feel awful that I cannot be there for others who are going through it but I just can't handle it.

proudtospin

My story is a bit dif. Mom passed of lung cancer over 20 years ago.  Brother was diagnosed with hodgkins about 15 years ago but told no one cept his wife for about 5 years.  He lost his very tough battle just this Jan while awaiting a cell transplant, his heart could no longer take the repeated rounds of chemo and a blood clot ended his live. 

I was diagnosed in 2008 of DCIS, did the lumpies, rads and no nearing the end of my 5 years of ALs with a good outlook.

I live in NJ, family in PA & Boston so I got through my stuff with support of my friends.

It changed my feelings about much of life.  I now am dealing with a dif unrelated health issue and hate the docs saying to me....well with your history.....

stinks but glad for the great pals in my life

ChemicalWorld

First of all, thanks to everyone for your kind words.  I am so sorry that others have gone through the same thing. 

Beckers, while not the same circumstances as yours, I also found out about the need for a biopsy the night before a flight that was to take me home for a summer holiday for 10 days, around my father's birthday.  My doctor practically begged me to postpone my trip so that they could do the biopsy ASAP.  I just couldn't bring myself to do it.  I told my doctor i'd call when I got back.  In the meantime while I was gone, I had a social worker calling me because of this, I guess they figured I was running from a potential diagnosis (oh if only).  It was nuts, frankly.  Can't even describe what a weird trip that was and honestly when I look back, I don't know how I did it. 

I was in counselling last year, but it focused far too much on insurance company & work-related stuff and readying me for a return to work that I wasn't ready for that I made little to no progress in other areas.  While I agree that I have PTSD stuff, my therapist felt I had just an adjustment disorder and kept telling me all the time how well I was doing really. Ha !  I just got frustrated with it all and gave it up.  Besides, I have a tendency to not take the greatest of care of myself when all this other stuff is going on, I postpone appointments and avoid things.  Not good.

My Dad loves to talk, but can keep a lot of stuff to himself and stuff it down and it manifests in other ways.  Our family is very close but not always the type to sit and share deep feelings.  Dad gets really frustrated and angry lately when he is not feeling well, I can't say I blame him, but it is hard.  I talk to him a lot, and have tried to share my own experiences with the chemo and pointers, or even comiserate with him, but he doesn't always want to hear it and I have on occasion been given the impression that I "don't understand" or that my experience was different, so even I don't know what to say half the time. 

jgbartlett, wow you echoed my same fears.  I know you know too well what it's like to feel like everything's cancer, cancer, cancer.  Thank you for your offer and likewise.  This is like being on the worst rollercoaster ever.