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Isolation

britchick356
Posts: 45
Joined: Jan 2001

I am not doing well with the isolation that this disease and treatment causes. Furthermore, just when I get better and start to participate in some social activity, I get sick and am out of it again.So I lose out on whatever gain I may have made. Any suggestions?

lfondots63's picture
lfondots63
Posts: 823
Joined: Jan 2006

Hi,

I'm from the colon cancer discussion board. I have stage 3 colon cancer. I was just wondering what type of cancer you have? Do you have any friends that you can hang with that understand your situation? Have you tried going on the chats here? I know it is not "going out" but it might help to feel a part of the group. It is also GREAT fun!
I know that while doing chemo some days it was just hard to get out of bed. My new "normal" was a nap a day at least. Now I'm getting some of my energy back since I'm done chemo but some days I still need that nap. Have you just finished chemo? Maybe e-mail me here so we can chat. Could you just be over doing it? I think the thing most young people notice about this journey is that they can't do as much as they are used to. It is a hard blow to take. I still take it one day at a time (and probably still do too much). HUGS.

Lisa F

Betsydoglover's picture
Betsydoglover
Posts: 1212
Joined: Jun 2005

Hi -

Like Lisa, I am from the colorectal message board - stage IV - been thru surgery and chemo and doing well.

I think I know where you are coming from, but what kind of cancer do you have and what treatments have you had? We can talk more. This disease has its ups and downs.

Here is fine, but I am very happy to have you email on this site (betsydoglover). Either way I hope to hear from you.

Take care,
Betsy

Leahi
Posts: 3
Joined: May 2007

Hello
Am brand new to this chat arena. Have twice had small cell colorectal cancer, have moved to a new state with husband-no family, no friends here, and am on disability (unable to work)...so I can understand isolation. I notice that your posting is about 6 months old. Are you still experiencing isolation, or (hopefully) you have found some ways to feel healthier and happier. Am holding good thoughts for you and would love a response from you, or anyone else for that matter!

cottom
Posts: 5
Joined: Jun 2007

The isolation is tough to handle sometimes. One of the things I did was of course, get active in my church, and in helping anybody else I could. As I got stronger, I joined Lowrey's Wellness Through Music program (www.lowrey.com), which not only teaches new skills, but gets you out of the house at least once or twice a week.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

Hi. I am an 18 year survivor oh NHL having had an autolous bone marrow transplant and total body radiation. Because of many late effects from all the treatments I am forced to stay at home alot and it is very difficult. I recently have gotten in to see a shrink who herself looks overwhelmed when I talk to her about all my traumas and concerns over the diagnosis/treatments/recovery/late effects, plus all the other events that happen to everyone as they grow older- past issues etc. Primarily my biggest problems are chronic fatigue and heart problems plus aches and pains from head to toe. I believe many of us also suffer from PTSD but thats a fight trying to get doctors to understand why.

I think the first thing I would suggest to you is to try and find a female (if you are female) shrink who deals with cancer patients or one who at least you can relate to. This might help you unburden yourself and if one doesn't work out try another. I also am going to try and start writing about my experiences as I can use the computer when I am up to it and that might be something you might do as well.

Do you have support from friends and family? I don't have much support so it's extremely difficult but I have 2 cats which I care for and I swear they are better therapy than most meds, not as many side effects either, hahaha.

I too have given up joining groups or making plans cause I very often have to cancel and it lets everyone down, including me. It's very difficult. Add to that the frustrations of people who think you should be 'over it' by now makes you crazy. You aren't alone many of us feel this isolate and frustration.

The best of luck to you, do you have any hobbies you like? Sometimes that helps as well. There are jobs that you can do over the computer as well but so far they have deadlines and I just can't predict how I will feel from one moment to another.

God Bless.

Survivor86's picture
Survivor86
Posts: 18
Joined: Apr 2009

Hi,

I am a survivor of childhood HD, I'm a 23 year survivor, I know exactly what your talking about, I also, had Chemotheraphy and Radiation from my neck to my pelvis and have had alot of health problems, and deal with pain daily!! and the isolation that comes with it. I have filed for disability again after being denied twice. I live with my mother. I lost my husband 3 years ago. I go to the local health department for health care, your right they know nothing about the late effects that we deal with on a daily basis. I have been to 5 different doctors in the last 2 months, and they admit they know nothing about the late effects, and just treat you like anyone else. My mom won't give up, I do have an appointment at Vanderbilt Hospital research facility its brand new an only been open for about a month, they have a new follow up care cinic that tring to help people like us! They say there is a whole team of doctors that can't wait to meet me, and hopfuly make my quality of life better.
Have you been to any follow up care facilities? From research on the internet there is not that many. Lance Armstrong has a few set up, but they are to far away.

Best wishes

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I looked into late effects clinics in the States (I am in Canada) but the only one that would probably be best for me was the Lance Armstrong Clinic at Dana Farber. After calculating what it would cost I had to forget it. It's only a matter of time before we get such a clinic here but so far, none that I know of. However, in the last 3 years I have seen a few of my specialists comfortable now looking at some of the treatments I had as being directly responsible for a few of my health conditions so that is a definite step up, validation at last. I have been on disability forever, right after transplant in 1991 actually as my recovery was extremely slow and I was hit with after effects right away. One or two of them have gone away but the big ones still keep me down. I see my GP once a month but missed the last one so it's been 2 months since I talked to her and I have 2 full pages of updates for her on my condition, what with specialists I have seen and their results.

I do feel the isolation, sometimes worse than other times, but for me just trying to keep on top of my health issues is a full time job. lol.

Talk to you soon. Hope this thread finds you having a 'good day'. Blessings, Blueroses

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

Survivor86. First of all I am so sorry as cancer took so much away from you at a young age. Having had radiation to my head I can't imagine the problems with full body radiation. Scar tissue, bone density problems and all the internal organs taking a beating would proubly cause one problem after another. If doctors throw a pile of drugs at the symptoms then we have to deal with the side effects along with masking other symptoms. I guess its like a whirlpool a person can't get out of. Now add in the Disability System that wants firm answers from doctors that don't have the answers. Its kinda like floating in space and waiting to find a planet that will take us. I went through the whole disability process from start to finish and ended up in front of a Federal Judge. I was blessed enough to have a GP Doctor that went through all the paperwork with me and was the collection point for all my medical records. It was much better than dealing with 24 doctors and 4 hospitals. I know its hard and people proubly look at you and think you are perfectly fine. And you are quite pretty, but I look great on the outside and feel like a truck hit me inside. I hope that someone is able to help you as you have a long life ahead of you. Best wishes Slickwilly

green50
Posts: 318
Joined: Feb 2008

I am sorry for what you have had to go thru. I may have missed it but do you have a cancer center near you? I see you said there was a new clinic. Our cancer center also has other departments which help those with problems after the treatments etc. I pray you find relief and can get on with a wonderful life
Prayers and Hugs
Sandy

slickwilly's picture
slickwilly
Posts: 339
Joined: Feb 2007

I just read your CSN page. I can't imagine what your parents and you as a child went through. Let alone the damage that was most likely caused by the radiation and chemo on a young child. The loss of your medical records sure makes for a mess when it comes to disability. It comes down to finding a doctor that believes in you. One that will take the time to listen and document your symptoms. When I was going through my disability process I contacted a Congressman and he flagged my file. I was quite surprised how well they kept track of what was going on with each step of my disability. Anyway I hope you get some help as you no doubt have alot of your plate to deal with. Your in my prayers. Slickwilly

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