Loonereclips - I too had error with my diagnosis so I can see where you are coming from there. I had lumps on my neck which the doctor felt and told me that I was probably just fighting off a cold or infection. This was probably 6 months after having my first child. I of course wrote off the fatigue and night sweat symptoms as part just having a baby. I believed the doctor and never paid attention to the lumps. I then gave birth to a second child and again 6 months later I am at the doctor, this time the lumps being larger and that is when he sent me for a biopsy. Waiting for the results were agonizing because I never thought of cancer. I then got a call at work from the doctor telling me that I had cancer. That was awful. Left immediately trying to keep it together. I look back at the whole experience and I get angry that it was a year and a half before diagnosis. I worry because I was pregnant with both my children when I had NHL.
I wish I could look at this more positive in the fact that I am in remission. That is were the guilt comes in when thinking about this. Other people do have it a lot worse than I do. Why can't I be happy about being in remission? I feel guilty and sad all the time for feeling the way I do. There are other things that contribute to my anger and sadness, but everything seems to start with the cancer. I wish all the time it is a bad dream and I will just wake up from it and things will go back to "normal".
Have you ever had the opportunity to tell your doctor about how you feel about the length of time between the onset of your presenting symptoms and diagnosis.
I Terminated my relationship with my GP and I did tell him how angry I felt. I asked for an apology and he sort of apologised but is was conditional, so not very convincing. It was at that appointment that I also told him I know longer wished to see him. He rang me that night to say that he thought it was a good idea if I found another GP - having the last word.
I was also upset at myself, thinking that I should have done more - although I went to see him a number of times. My attitude towards doctors has changed - they are all different of course - and the way the health system works in New Zealand means that I can’t shift from one to another simply by voting with my feet.
I do want to work with doctors whom I feel comfortable with, but that simply isn’t possible most of the time and in terms of treatment I have seen lots and lots of doctors - many of them registrars ( a doctor rotating in various specialisations around the hospital). I have had disappointing or puzzling experiences with many of the doctors I’ve encountered and this is just the way it is.
In relation your feelings now you are in remission - are you scared the cancer might come back? Can you seek some reassurance in relation to your children?
What you are experiencing may have nothing to do with other people because there are always people who are worse off and people who are better off - but it does seem like you are being very hard on yourself. Can you think of any ways to be kind to yourself - you’ve had a hard time and you are still having a hard time.
There is a great essay I’ve just read called “After Diagnosis” by Joan Didion. It might be something you find interesting. Just typing the title and author into google will bring it up.
loonereclips. I hear you. I am not able to do what I did before. For one thing I have lost a lot of strength and I have been out of chemo almost a year. Well, 10 months. Honestly, I was angry this winter because it is horrible to not be able to do what I used to do. But it is a combo, I am grateful to be alive and I have never been truly happy in my life apparently because I am truly happy now.
Also I want to say that when I was first off chemo but still to sick to do anything really I recall that I was invited out on a boat. I love boats, or did. And I could not go. And I was pretty much stuck with sitting around reading or watching tv. I felt what you said "missing a sense of vitality." and "sad" that I could not do anything. But I was too sick from the chemo to ever be upset about much of anything. It took me until chemo three to even realize I might die. Then I cried for a week but I realized everyone would be really sad if I died and so I just fought the good fight and won. Well I have to restate that. I thought I was going to die when my first diagnosis was bone cancer from just looking that the MRI's. And from the looks of it, it looked like I was a goner. But it turned out just to be NHL masses over my bones, not in them. So I got a reprieve and when they said NHL all I heard was "it's curable" and I went with that.
It is a challenge now. For me I turned 50 this year so I went from the having the strength I kept up all my life to being pretty frail now. I am working on getting back my stamina still.
And Crazy Mom--- Can you isolate why you are angry you had cancer? Did it disfigure you or scar you? Did it leave you with some permanent damage? Why does your sadness start from the cancer? I would not want to go back to "normal". Who knows how long people have NHL before they notice but I look so much better now. I feel so much better then I did for almost 2 yeas before I was diagnosed. I am truly happy. I thought the brush with death has brought me a sense of enlightenment. Other people have noticed it in me too. I am a much better person now.
loonereclipse - I was rereading your initial post and the line about not liking being a patient caught my eye. I have never had to ask for help for much in my life. For me having cancer was a lot about having to ask for help and receiving it. It was a lot about letting people be of service and thanking them with profuse gratitude. It was a life lesson for me beyond the obvious. Being "a patient" and not the strong one was in a strange way a gift for me in the long run.As it turned out, I had so much "money in the bank" from helping others that when so many showed up for me I was changed just by the love. I would be sitting in my house thinking I was too tired to make some dinner and someone would show up with a beautiful meal. It was amazing. Do you like to help people? Well this is a time when people GET to help you.
O.K. here's my twist or my two cents worth.It's not like we can give it back or send it away.Whether we like or not we have cancer.The way I see it last time I looked in the mirror I still had all my fingers ,toes ,arms&legs and my empty head was on top of my shoulders.Thank you dear lord.It's like anything else if your in a car accident and lose a leg or end up in a wheelchair,one needs to find a way to "live with it" as you can't change it.Feeling so **** blessed to have all my limbs even if they don't respond on command.I can think of alot of worse off positions to be in.Like stuck flat on your back in a bed only to look up at the ceiling forever.Misery makes for slower healing.As bad as I feel right now if someone told me a joke I'd certainly laugh would probably work better then I pill I took.So just because we have cancer doesn't mean there is no more joy left in life.Let it go,set it aside,smile take time to smell the roses people.Hugs hang in there people,Michele
Hey Loonereclips,
I just take it one day at a time. For one thing I have a great support system. My husband is the best. Also my mom and mother in law have been awsome too, and when I'm really down and out I have a great theropist I talk to. I have had struggles my whole life, this is the first time in my life that I have been able to rely on my mom at all. I struggle with depression, and all the things that come with having chronic illnesses everyday between the cancer and lupus you know. I try to think of all I have to be greatful for. I try to keep doing things i would do anyway. Dealing with my kids and the fatigue is the hardest. I have good kids, but they are kids so they still get into trouble, but now I alway feel guilty when I chastise them, but whether I'm sick or not I have to be their mom and help them to grow up to be good respondible adults, so I do what I have to do. I've had alot of people in my life ask me how I have kept my life together so well with all I have been through in my life, and all I can say is I don't have a choice, I can give into it all and be miserable all the time or learn to deal with what has been handed to me. Sounds like I got it all together don't it, but don't be fooled I'm crazy most of the time and I pretend really well, and when I'm alone I cry and feel sorry for myself, then I shake it off and move on to the next step. We keep moving on keep moving forward because that's what we have to do....Keep the faith and take a deep breath. Also coming here and talking to youguys really helps. It makes me feel like I'm not alone in this. The sun is shining today so today is a good day....JO
WOW what a powerful group. I have had cancer 3 times 3 different kinds. I used to worry about it coming back but after a few years and many good check-ups I could finally let that feeling go. I also have never been angry with any of my diagnosis. I got the first one when I was 28 years old and my last one 1 month ago.I guess I just never acknowledged that I could die from anyone of the cancers I've had or have now, because I guess I am a fighter and just assumed I would beat this too. And with that said I have beat 2 of them and in the process of working on #3. I am an RN so knowing the ins and outs of the medical communtiy really helps but knowing what can/could happen sometimes adds an extra stressor. I choose to investigate when I had time helps to relieve my stress to have answers. I hope everyone finds a positive way to express their anger like here because getting it out and venting really helps especially to people that know why you feel that way. Very normal response, don't be afraid to say what you feel because if you can't say it here where can you? Therapy really works too if you find a good one. They are out there.