Sadness

Just wanted to say "I'm thinking about you"

Living with cancer for me means lots of ups and downs, and one of the most difficult parts is when NOT with others here or that have been through this, people just can not truly know how I feel. Sometimes I just want those who I am close to like family to "get" it, (not to get cancer but to understand) but yet I hope they never do, because the only way to really "get" it is to get cancer.

It is hard to stay positive some days, but somehow we need to be mindful of all the good we do have and grateful for little things. I am so very grateful for this forum and the people here who offer insight, support, and encouragement to otherwise total strangers because they do "get" it.

Tomorrows a new day.....I wish you a day of peace in your place.

katheryn

I wish you well and can relate to sadness. I feel like I cry everyday and I am done with treatment (almost 4 months post) but feel despair as I don't feel like myself at all. I am confident I will get there, but this is a long haul for all of us and no fun. I am really glad for this forum and don't feel as alone in the journey. Keep being positive and gentle with yourself. be kind to yourself and do whatever you need to feel better. go get yourself a massage and pamper yourself. you deserve it!

Margaret

rlr000dc said:

Thanks

Thanks for being so open. I kept telling myself when i got done with all my tmts I would go back to my normal life and I wouldnt get any more check ups. It would be a thng of the past. Seeing this i am learning that its not really an option. Cancer changes your entire way of thinking. all the plans I had are all the time changed. I was always a sporatic person which usually worked out better than planning things but to think long term. "We can buy stocks and have extra money when we retire." then i think.. well he would have it to retire..hmm its so strange. i know we all must die but  knowing the future may be out of reach is very surreal. I often worried of my family alll dying and me being left alone. Then here I was almost the first one out.

Thankful for all of you

rlr

I have had similar feelings as yours.  I only have one sibling, who lives several hundred miles from me, and my 92-year old mother has dementia.  She now lives in an assisted living home near me, after moving her down here last year.  One of my biggest worries as a cancer survivor is that I will not outlive my mother and be here to continue to oversee her care until the end of her life.  It keeps me awake at night on a regular basis.  While I worry about all of this, I also find myself sometimes being angry about not being able to do some of the things that my husband and I had planned on doing in retirement, knowing that at any time, cancer could once again rear its ugly head.  I'm not getting any younger and I know that I'm not going to live forever, nor would I want to. 

Despite the health issues I've had to deal with post-cancer, I do feel most of the time that I'm living a pretty full life.  I just get a little sad once in awhile thinking about some of the things I cannot do, such as take away my Mom's dementia.  But you are right, in one way it is a blessing, as she doesn't even remember that I've had cancer, nor does she know about any of my other issues.  I don't ever bring any of that up with her, knowing it would upset her, albeit only until she forgets it.  Despite her health and my health, my husband and I do manage to take a short road trip now and then.  Will I ever travel the world?  Probably not.  Please don't be sad for me though.  I've had some awesome experiences in my life.

One thing that my body has done over the years is force me to educate myself.  I have learned so much because of my health issues, which include hydrocephalus, anal cancer, malabsorption syndrome, chronic kidney disease and osteoporosis.   I'm not sure I'd ever make it through medical school though!   

After hearing your stories I am blown away, encouraged and discouraged! The decisions we have to make and the pain we have to endure can be overwhelming. I am proud that you both have conquered so much, you give me hope and many others who will see and learn from these posts. I started my gratitude journal it did help me to feel good. I want to fill it with so much more and hopefully with many meaningful events yet to come.

Thinking of you both

rlr

You both are an inspiration thanks so much for the support you have given to us on this site. With your experiences you bring alot to the table. At least we have the internet where we can help ourselves with research unlike others before us.

Martha do you have a shunt for the hydrocephalus? and are you getting kidney dialysis? Im proud you are there for your mom, that has to be hard and Im happy you and your husband take trips when you can and feel well.

Katheryn so you have an ostomy still? and do you believe that the other cancers came to fruition (is that a word?lol) from the original cancer dx? Congrads for graduating! whats the degree in? I like that you keep busy with volunteering, I really need more to do. I live in the countryish and is 30 minute drive from anything. Funny thing happened recently. I was looking for caretaker for a relative who has dementia so at the store i found two ads for helpers: the first one was someone who i went to high school with. She now helps me (& my Aunt)and we have become great friends (enjoyin that ) the second one i got a job for elsewhere and she called me to update her progress, which i thought was sweet. So thats helped for a minute. It just seems like the days are really long and I feel stuck. If I wasnt working I dont know how I would act. (I work midnights). I rode the roller coaster some and i agree with you about the ride and hanging on with the drop! and the hope and goodness.

Im so happy the doctors were able to find your diagnosis and take care of these issues. That would be a confusing time waking up like that and having headaches.  I did home health care for a lady who had that as well. She said when she was a baby her mom always put bonnets on her and she noticed the bonnet kept getting smaller and smaller. The found out she had hydrocephalous and put a shunt in her head as well. She didnt have any mental issues but she did have some indentation on her skull. She had limited movement of her legs maybe due to that.

For your kidneys is it water? Whats your favorite food? Thats impressive that the diet will work. My gpa had kidney failure but not dialysis. Hes been gone over two years now. I miss him.

Sounds great that you have your mom close and she is doing well. Im happy you are taking a vacation. Im thinking of a cruise but need to wait and rebuild my time so probly be next year.A friend said she found a resort in Jamaica that was out of season (feb) and she got it way cheaper. I think i would like something all inclusive. That may be more relaxing. My son wll be graduating high school out of state this year. Mom and I will be going to see him and his gf, who will have her baby by then. My only child and first gdaughter.

rlr000dc said:

Martha and Katheryn

You both are an inspiration thanks so much for the support you have given to us on this site. With your experiences you bring alot to the table. At least we have the internet where we can help ourselves with research unlike others before us.

Martha do you have a shunt for the hydrocephalus? and are you getting kidney dialysis? Im proud you are there for your mom, that has to be hard and Im happy you and your husband take trips when you can and feel well.

Katheryn so you have an ostomy still? and do you believe that the other cancers came to fruition (is that a word?lol) from the original cancer dx? Congrads for graduating! whats the degree in? I like that you keep busy with volunteering, I really need more to do. I live in the countryish and is 30 minute drive from anything. Funny thing happened recently. I was looking for caretaker for a relative who has dementia so at the store i found two ads for helpers: the first one was someone who i went to high school with. She now helps me (& my Aunt)and we have become great friends (enjoyin that ) the second one i got a job for elsewhere and she called me to update her progress, which i thought was sweet. So thats helped for a minute. It just seems like the days are really long and I feel stuck. If I wasnt working I dont know how I would act. (I work midnights). I rode the roller coaster some and i agree with you about the ride and hanging on with the drop! and the hope and goodness.

Hi, hope this day finds you doing well.....

I do still have my ostomy as it is now permanent. Due to my anal cancer tumor location, I had surgery prior to beginning chemo and radiation. There are several types of ostomies and mine is called a "loop ostomy" which is easier to reverse. The initial intention was to do that 6months or so after treatment but the radiation damage was too severe and while technically the reversal could still be done, after consulting with a specialist in Milwaukee, the chance for successful healing was slight and the potential for bowel incontinence was likely. While there was certainly an adjustment period, now, (6 years later) it seldom presents any issues for me and interfers very little with my daily activities. I think the idea that people create in their mind regarding ostomies is usually far worse than what living with one actually is. That being said, some people do have issues that are hard to manage and I have been quite fortunate so far. I go to a support group in person for "ostomates" which has been a tremendous help in adjusting as this is definately another area that unless you have personal experience with, is hard to relate to.

My breast cancer was called Secretory Carcinoma and is considered rare. It is a very slow growing cancer and usually not even detected on standard mamograms until later stage. It is the same cancer that is more commonly found in men or children with breast cancer. While in my case it was detected on my one year follow-up PET scan for anal cancer, it was estimated to have been growing for approximately 10 years! Treatment was a mastectomy, and I chose to have a double....just seemed like the best option for several reasons but mostly the mere feeling of physical symmetry (I was already dealing with ostomy stuff that way) In a strange way, having anal cancer and the PET scan, saved my life because there is a good chance that otherwise the breast cancer would not have been found until late stage and more difficult to treat! The only relation between the two may be that this long time slow growing tumor had been putting stress on my immune system making it too weak to fight the anal cancer (most likely HPV related)....but thats just my theory, otherwise, just lucky I guess!

With all this going on, I didn't go back to work but began to feel at odds with what to do with my time. I had been in college over 35 years ago but never graduated and it was my son that suggested taking just a class or two and see how it goes. I began with "Introduction to Human Services" almost as part of my own personal emotional recovery from cancer. I loved it! I liked the school setting, and being accountable for turning in work. It also gave me something to focus on rather than doctor appointments and medication schedules. I continued with some classes in person, and some on line, and graduated with an Academic Human Services degree and a certificate in Psychology. I had done a variety of volunteer work in my community when my kids were young (I have 5) but what I now do stemmed from a requirement for one of my college courses and I just stayed with it.

I also live in the country but when young grew up in the city. My husband loves being out here, but my heart is really where the business of people are and would go stir crazy if I didn't stay involved some way.

I do have 8 grandchildren ranging from just over 8 months to 8 years old. They all live within a couple hours of me so our family sees each other often and I am so grateful to have this time with them. The youngest has cerebral palsy and both she and her mother (my daughter) are such a great inspiration to me. They are so strong in facing the world from a different point than so many of us! My husband lives under this umbrella of cancer as well and recently went through surgery for a tumor on his spine.....recovery has been slow going but he is doing well. He just finished radiation last week and will begin chemo soon. Sooooo, my days are full, but I strongly believe in the importance of self-care and try to be mindful of taking moments for myself. This past weekend I did a little get-away to visit one of my daughters and stayed at a waterpark resort in Northern Wisconsin. It was great, even rode the waterslide with my granson! I am hoping to take a longer road trip south this spring but have not made definate plans as of yet.

Again, hoping this day is good for you.....

katheryn

even tho your words sound eloquent ... have you had the above cancer??? just wondering......