My wife was diagnosed 5 weeks ago

richls
richls Member Posts: 54
in Colorectal Cancer #1
with colon cancer that has spread. The dr. told us monday that there is no cure, that the best they can do is try to maintain it. They never mentioned what stage it is, most likely stage 4 or pretty much anything else. She is on two different chemo treatments, one that makes her sensitive to cold as well as 5/fu pump she has to wear for 2 days. Should the drs give us more answers? Or do they only answer questions that are asked. I don't even know what to ask, this all still new to me. Could anyone kind of walk me through the beginning stages of this? I am lost and confused. Thank you for any help you can give. I appreciate it very much.

Comments

  • Brenda Bricco
    Brenda Bricco Member Posts: 579 Member
    #2
    Hi, so sorry for your wife's
    Hi, so sorry for your wife's diagnoses... I remember the first weeks after my husband was diagnosed and it was such a scary time; not to mention a blur.
    I think the best thing you can do is write down everything that comes to mind as far as questions because remembering them while at appointments... well, let's just say that it's not likely.
    If you go searching the internet you will undoubtedly come across stastics that are quite doomy but the thing to keep in mind is that lots of things have changed and people are living much longer than they are suggesting.
    I would suggest hanging out here and asking as many questions as you want, people here are so helpful and caring.
    As far as the stage... I am under the impression that is it has spread to other organs it is stage 4. It can be sread to lymph nodes and be other stages less than 4 - with letters mixed in.
    I will say some prayers for you and ask for strength and peace of mind.
    GOD's blessings to you and your wife.
    Brenda
  • Luckygirl2
    Luckygirl2 Member Posts: 308
    #3
    When I first diagnosed
    on a Friday, I came home from the hospital to prepare for my surgery on Monday. My husband and I sat down and started making a list of questions. After my surgery and into my recovery, we continued to add to the list. All my doctors were very good at answering any of my questions.

    I did a lot of searching on the web, not always a good thing. I wish I had found this site early in but I just found it this year and it has been a wealth of information and caring. Asks just about any question on here and someone will have an answer or suggestion.

    I was diagnosed at Stage 3B because my cancer had gone into some of my lymph nodes. I was on 5 FU and oxiplatin. I started with a pump but we didn't get along so I got put on xeloda. The oxi makes you really sensitive too cold for me it was almost the second it hit my veins. It will make you feel like you are swallowing glass if you drink anything the least bit cold. I learned to like room temp. drinks. It will also make your hands very cold sensitive, just reaching into the refrig will cause you to jerk back. A nice warm pair of gloves works great.

    You may feel overwhelmed but know there are many here who can help.

    Debbie
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #4
    Sorry
    Sorry that you had to find this site. Don't ever give up hope of a cure. There are people on this board that were told no surgery, no cure and after treatment they became a possibility for surgery and then NED (no evidence of disease). You might want to get a second opinion. A doctor should never give a death sentence, but a possibility of things through treatment. A second opinion should always be by a doctor not in that network also because they probably stick together. Oxy is the cold sensitivity and it is bad. It's hard to tolerate but can be dealt with by wearing gloves to take things out of the fridge but don't have her drink anything cold for first few days after. It's like shards of glass going down your throat. If she is upset and sheds some tears she will feel the same pain so make her feel loved and cared for so she calms down. She can get through this. Get another opinion and keep us informed.

    Kim
  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #5
    Sorry you and your wife are
    Sorry you and your wife are going through this. My husband was diagnosed June 1 2011. Stage 4. He has had numerous surgeries and a lot of chemo. He has an ileostomy (bag). He is a real fighter. Doesn't let cancer slow him down. His quality of life has been very good so far. I, on the other hand have had to dig pretty deep within myself to get through it all. I'm just now feeling like I've come to terms with the situation. I've learned to just focus on the day at hand. I do not think too far into the future. (When I do, I feel panicky). I've accepted that planning for the future is out the window. Just can't do it. No idea what the future holds. After he was diagnosed, I was obsessed with thoughts of "if only". Fantasized of different scenarios that would have caused us to find the cancer sooner etc...... I've realized that the past means nothing. It is over. The future is yet to be determined. I just focus on one day at a time and try to find as much joy in it as possible. Some days it's easier than others. Waiting on pathology reports and scan results is particularly difficult for me.

    It sounds like your wife likely has stage 4. Some people live many years with stage 4. Can sort of manage it like a chronic disease, like diabetes. I realize that this is not an ideal way to live. You really have to make the best of it. A lot will depend on how she responds to the chemotherapy. Attitude is very important. I think a positive frame of mind is a real asset in battling the disease. Find the best oncologist you can. It is important that you and your wife like him/her. You want your onc. to be honest with you but also positive and eager to help you fight. If and when surgery is possible, do it. Always try and have the cancer removed. Each surgery will buy the patient an average of six months. (According the my husbands surgical onc.). Accept that you are embarking on a whole new way of life. Life will be different. (I hope this doesn't sound overly dramatic). My husband and I still have a very nice life, overall. If we we're to look really hard we would find that there have been some positive things that have come from this cancer. But, we would gladly give them up to go back to the way it used to be. LOL.

    Most important. Stay connected with this board. It is so helpful to talk to people who understand, but also it is a great resource. We have learned so much from others here.

    All the best,

    Chelsea
  • SharonVegas
    SharonVegas Member Posts: 189
    #6
    Welcome to the board RICHLS.
    Welcome to the board RICHLS. Sorry your wife and you have to go through this. You are in the right place for answers and support. 5 weeks in you are probably still in the shock stage. You should get more info from your Doc by asking questions and writing down everything. Mainly you want to know what stage (sounds like 4). Don't get caught up in statistics becuase everyone's journey is different. Positive attitude and good support system are key. Many people on this board, including me, have stage 4. As as many questions as you want and you can bet, people on this board will try to answer or provide their experiences.
    My best to you and your wife,
    Ron
  • steved
    steved Member Posts: 834 Member
    #7
    Lots of good advise above
    In this initial phase it is very overwhelming and sometimes not knowing too. Ich can help. But in time knowing more will give you more of a sense of control over your situation and help. Perhaps some questions to ask include
    Where is the cancer in her body
    What are the treatments aimed to do
    What are the likely side effects of treatments?
    You may think of many others in time but these are basics. Cancer that has spread to other parts of the body (metastasised) is classed stage four and your docs are gith that the prognosis isn't great. Some can be cured but the vast majority it is about managing the illness. Having staid that though it can oftenbe managed as a chronic illness for a long time with many here who have managed stage four cancer for many years with good quality of life. Getting your head around living with cancer is something that takes time though so just give yourself that space to adjust to this huge change, gain some knowledge and talk openly wiTh your wife about your situation.

    I hope you find some help here and feel free to ask any questions here- there are no stupid questions when it comes to cancer,

    Steve
  • buckeye2
    buckeye2 Member Posts: 428 Member
    #8
    Rich, I am sorry your
    Rich, I am sorry your family is having to travel this difficult journey. When I began this journey with my husband a year and a half ago, a friend who was at the end of her journey with her husband said she felt so sorry for me. I didn't understand that feeling at the time because it appeared as if I was going to get more time with my husband than she with hers but now I understand that the beginning of the journey is the hardest part. While there continue to be challenges, sadly you develop a thicker skin so that you don't feel as if you have been punched in the stomach like you do in the days following diagnosis. My advice to you is to first of all apply for disability benefits for your wife now. It takes six months to process and working will be difficult during treatment. Following getting the disability benefits, it takes two years to qualify for Medicare which may be another issue for your family if your wife is carrying your health insurance. My other piece of advice to you is to clearly know your role in this journey. I have believed my role was to create normal in the midst of chaos. I have chosen not to discuss my husband's condition, treatment, or health with anyone to achieve this goal. In order to live normally, we need cancer not to be the center of our universe and that requires others not to put that at the forefront of every event and conversation. This has allowed my children to live normally as hopefully this journey is a long one and it is unfair for cancer to hold them hostage. I wish you the best. You can do this.

    Lisa
  • richls
    richls Member Posts: 54
    #9
    buckeye2 said:

    Rich, I am sorry your
    Rich, I am sorry your family is having to travel this difficult journey. When I began this journey with my husband a year and a half ago, a friend who was at the end of her journey with her husband said she felt so sorry for me. I didn't understand that feeling at the time because it appeared as if I was going to get more time with my husband than she with hers but now I understand that the beginning of the journey is the hardest part. While there continue to be challenges, sadly you develop a thicker skin so that you don't feel as if you have been punched in the stomach like you do in the days following diagnosis. My advice to you is to first of all apply for disability benefits for your wife now. It takes six months to process and working will be difficult during treatment. Following getting the disability benefits, it takes two years to qualify for Medicare which may be another issue for your family if your wife is carrying your health insurance. My other piece of advice to you is to clearly know your role in this journey. I have believed my role was to create normal in the midst of chaos. I have chosen not to discuss my husband's condition, treatment, or health with anyone to achieve this goal. In order to live normally, we need cancer not to be the center of our universe and that requires others not to put that at the forefront of every event and conversation. This has allowed my children to live normally as hopefully this journey is a long one and it is unfair for cancer to hold them hostage. I wish you the best. You can do this.

    Lisa

    Thank you
    Thank you everyone for the helpful advice and kind words. I guess the shock of this still hasn't worn off yet. We are lucky to have so many great friends for support. I know I will be learning a lot from this discussion board.
  • karenl1982
    karenl1982 Member Posts: 2
    #10
    Hello
    I'm so sorry to to
    Hello

    I'm so sorry to to hear about your wife. I write a blog and thought this might be useful for you both.

    http://www.nutritiousroots.com/uncategorized/the-proof-is-in-the-healing/
  • karenl1982
    karenl1982 Member Posts: 2
    #11
    Healing
    Hello

    I'm so sorry to to hear about your wife. I write a blog and thought this might be useful for you both.

    http://www.nutritiousroots.com/uncategorized/the-proof-is-in-the-healing/
  • rogina2336
    rogina2336 Member Posts: 188
    #12
    Welcome, this site is full
    Welcome, this site is full of wonderful giving people that will help you and your wife in this journey. Kim

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