A bit about me

Discussion Board Forums Introductions! A bit about me

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  • #86526
    iowagirl
    Member

    Thata girl…..now you’ve got it. Your last reply “sounded” better…..like you are getting a handle on this and realize “it isn’t YOU.” As for this group of people……we’ll laugh with you…and cry with you…..and some will be up late at night with you.

    I’m so glad to hear that you’re going to be seeing a social worker. By social worker, I’m assuming you mean psychologist? They are two different things. The social worker can help get you set up with someone to talk with…they should have resources……that’s how I got hooked up with my psychologist. I’m glad to hear that your hospital oncology department has someone to help you out with this. The one I go to is known to deal more with oncology patients….and there are various topics your psychologist may be able to help you with, esp when they are more familiar with cancer patients. Generally, a psychologist trained in working with cancer patients is pretty good ….but if the “fit” doesn’t feel right, don’t feel badly about finding another one. Sometimes, personalities just don’t mesh. You have to find the right one. I found talking with the psychologist to be freeing…..no judgements….just listening and talking….trying to make some sense out of it all. I could tell her things…and it was “safe”. I hope that happens for you as well.

    Hugs…Julie

    #86525
    moose
    Spectator

    Thank you to your responses Lainy, Darla, Julie and Illas, I really appreciate you listening and taking the time t o reply. I take on board all your comments and they really do help, especially as i feel you all understand. its very powerful to have a group of people support you, when we don’t even know each other.
    i think i feel better about the friends issue and not so hurt but realise its their own short fall comings.
    i am also going to be seeing a social worker connected with my hospital oncology dept, so that will really help i think.

    thanks xoxoxo

    #86524
    ilias
    Member

    Hi Mary,

    Can’t add much, but welcome to an extraordinary family here.

    My thoughts and warm wishes are with you.

    Cheers
    ilias

    #86523
    iowagirl
    Member

    Moose, you just said something else that reminded me of the time after surgery. Before surgery, I was singleminded….full speed ahead…get that surgery…get that damned thing out of me…and I’ll be better. Well, I got the resection…..and mentally I was in a far better place…even though I was recovering from the major surgery. But, the farther out from surgery I got…and the closer to starting chemo (if I was going to), the more anxious I got again…more crying, etc. It has been similar before and after scans…just reversed in when the anxiety hits. But I remember that feeling in the couple weeks before surgery….I HAD to get that thing (tumor) out of me….and the relief I felt after the surgery that it was gone.

    The other thing I wanted to touch on was very close family members with whom you really have to stay in touch. My mother is very elderly and does not deal with medical things well (whole history of family issues i won’t go into here). I know this….and I know what her responses are going to be before she says them….which should help, but it doesn’t. I know my mother can’t be the support for me that I would wish she would be….though I hoped that maybe in this crisis, she would finally step up, but she really didn’t much…and once the chemo was over, she went back to her old ways. She looked at my cancer (and a previous heart attack 13 years ago) the same way….as to how they were going to affect HER…..not what she could do for me. I know she thought she was trying during this cancer treatment…surgery and chemo….but the phone calls often turned to her and not me. I’m sure she was concerned and scared…but more scared of her outliving her children, than for me. That isn’t being harsh…..as I said….there is a whole history I’m not talking about here. It is just the way it is. But, it was still disappointing. And, being my mother, she wasn’t someone I could really push aside…at least I didn’t feel I should. So, I finally gave up…let her say her trite things….and just got through the phone conversations (she lives a long ways away).

    As I said…sometimes, the people we hope will be our strongest rocks….don’t respond to us the way we thought they would or wished they would.

    I had people who were there for me…helping with food and offering to give me rides to treatments…..but these same people often said stupid things. I finally decided to quit arguing with them about it….accept the wonderful things they offered and leave it at that. If they wanted me to be more positive (after I shared with them the facts), I finally figured out that it was they who couldn’t handle the truth…and it was mean for me to keep pushing it at them. They were never going to accept it…because they didn’t want to deal with it. But, I could accept the offers and gestures they made otherwise and be thankful. It was definitely a tradeoff.

    Julie t.

    #86522
    darla
    Spectator

    Mary,

    I think we all have had similar experiences and feelings both as patients, care givers and those left behind. Those you thought would always be there for you are no longer there and others will surprise you. I agree with Lainy, it is on them, not you and you don’t need the stress of those who do not want to be there in your life right now. Just come here and we are happy to listen. :)

    Hugs,
    Darla

    #86521
    lainy
    Spectator

    Mary, this is my outlook on the friends. Sometimes the stress that is caused is not worth the effort as you need your energy to be positive to help fight this cancer.
    Story time: Teddy and I lived in an adult community in Phoenix. My best friends, a group of 5 ladies, were CLOSE for years. They were terrific and especially when Teddy was sick. After everything was over something strange happened. The ‘ringleader’ would roll her eyes when ever I talked about Teddy. Don’t get me wrong she loved him, just didn’t want me to mention him and would roll those eyes at the others. One day I had it and sent her an email that I was dropping our girl’s night out and etc. Then I moved to an apartment as it was cozier than living alone in a house. Well 3 years went by that I did not see nor hear from them and all of a sudden last spring they started sending me emails and asking me to do things. I did. It will never be the same though. People are not always as kind and intelligent as we think they are. It will really help you if you keep stress from your door! Perhaps they are not able to accept things well, but that is not your fault. Be strong and a little help from a pro can’t hurt.

    #86520
    moose
    Spectator

    Thank you Julie for your long reply, it did really help to read your story and I appreciate your understanding. I think your right about having a psychologist and this is something I think I will look into. I’m finding that now I am recovering more and more from the pain of surgery, I am becoming increasing upset and scared about having cancer. I am also terrified about having chemo ( although I recognise that I am lucky that I can have it).

    Still struggling with friends who aren’t turning out to be very good friends, and who don’t want to talk to me. I always find it strange that in this world of email, text, answering machines, Facebook etc that they can’t just send me message if they don’t want to speak!!

    Thank you everyone for listening to me whinge.

    #86519
    gavin
    Moderator

    No wordy limits here Julie! And Mary, so glad that you are feeling better after sharing about stuff here. I did that lots when my dad was fighting CC and I so know that it helped me loads. That and the wonderful people here as well helped enormously too! Keep coming back Mary.

    Hugs,

    Gavin

    #86518
    iowagirl
    Member

    Sorry everyone, about the excessively long post. As you all know, I can get wordy, but this one probably exceeds the “wordy” limit. However, Moose’s post really struck a nerve with me…..and I applaud her for having the courage to say the things she did.

    #86517
    iowagirl
    Member

    Yes, yes, yes…I can relate entirely with everything you said in your first post. I knew immediately, when my GP asked for a CT scan, that she was looking for cancer, but it surprised her as well, when they found the tumor in my left liver lobe. I’ve also had surgery, Feb 2014, and the last year has been a blurr. Yes, people say stupid stuff…..and it sounds like good things to say to them, I”m sure, but we know the impact it has…and it isn’t usually good. I think that they say these things because they think it will help you fight the cancer…and it makes them feel better. Otherwise, they can’t cope with it. I know…where does that leave us, as patients. We feel like we’ve been slammed in the stomach with a ball bat and people are telling us these stupid things. Talking to a psychologist really helped me a lot, because I could tell her things…say things to her…and cry my heart out to the point of sobbing if I needed to do that. She also helped me to see that I didn’t need to explain anything to anybody…or even tell some people that I was dealing with cancer. That cut down a lot on some of the stressful conversations. But, I remembert desperately just wanting someone to know what this cancer is and understand. There are responses you can use that tiptoe around the subject. Of course, if you’re having chemo and lose your hair….then people do start to wonder. But, we can always say , I lost my hair and hate hats and scarves or wigs and leave it at that. Unless they are someone close to you, you don’t need to give them anything more for info. If they ask, it is perfectly fine to tell them that you would rather not discuss it. If they persist, you turn on your heels and leave. It’s pretty amazing how empowering that can make you feel. I have to admit a few times using my cancer to get rid of telemarketers (and they have taken me off of their call lists) :)))) I”m glad you found us …though I would rather none of us had a reason to be here. Some people use some anxiety drugs to help them cope with all the feelings, but I prefer to use the psychologist mainly because it gets it out and she gives me tools to help me through rough spots. I may use something before getting scans for the anxiety, but inbetween, things seem to be pretty good. Let us know how things are going…..don’t be worried about spilling your guts here…..we’ve all done it….patients and caretakers alike and there are no judgements. Don’t feel guilty for being able to have surgery when others aren’t able to have it for various reasons. And don’t feel that because you had surgery, you need to suck it up and “get over it”. Oh, have I heard that one. You will never get over it…but you will come to terms with it and find there are days that you rarely think about it. Yesterday, it was about noon before it came to my mind…..and then, I can honestly say that I didn’t think about it again for hours. So, here I am, a year out from surgery, and it’s not the first thing on my mind every day. But, I do remember when it was…and I know you are probably in that place right now. It’s okay….it will get better….even if you do adjuvant chemo and don’t feel well, you may think of the chemo as something totally separate from the cancer….esp since you had surgery already. Maybe not…but everyone is different. I really do recommend though that if you could meet with a psychologist who deals a lot with cancer patients….you will find that it is a safe place to release emotions, fears and you will maybe find out some good coping skills. It may not work for you….we each have to find our own way with this, but when family and friends aren’t helpful and can’t handle the scary and sad stuff, then we, as patients, have to do what we can. Groups like this help, as does prayer (if you’re so inclined), psycologist’s help, medications….and usually a combination of all of the above. Why do people say the things they do…..because it isn’t really you who needs to think positively….it’s THEM….they can’t cope with the subject themselves and by telling you that yoiu have to be positive, it takes the heat off of them. Is it fair…heck no….but the best of friends and the most loving of family members will often surprise you and not be the rocks you thought they would be. It doesn’t mean you have to toss them aside…or never be friends again. It just may mean that they aren’t personally as strong as you had hoped. Hugs……Julie T.

    #86516
    okansas
    Spectator

    Hi,
    Just want to say thank you for relating the history of your cc. I’m so glad you were able to have the surgery and that it was successful.

    So sorry that you’re having to face the crazy comments that people make, and unfortunately there will most certainly be more. Hopefully having the friendship of your extended family here on the forum will help you get through that.

    The beauty of this place is you can always keep it real, there”s no need to sugarcoat your feelings and you can be frank about what you’re going through. All of us have experienced to some degree or in some fashion what you’re going through, so we won’t be surprised or shattered.

    So sorry that you have this cancer, but so glad that you’ve made your way here.

    Margaret

    #86515
    moose
    Spectator

    Thank you very much Lainy, Duke, KrisV and Gavin,
    I really appreciate your replies and taking the time to write to me. Thanks for your welcomes, it is sad isn’t it, that we are all connected through something so horrible.
    Thank you for your advice, Duke I have written down what you said and will take your advice/questions to ask to the oncologist. The reason for the gap between surgery and oncologist was that my surgeon wanted me fully recovered before I started Chemo. They have discussed my case before a multidisciplinary team at Frankston hospital and I feel confident that they have my best interests at heart.
    Gavin it does feel better being able to share my story and how I feel…not something I have been able to do.
    I also appreciate that I could have a successful surgery and its very humbling coming here and realising that I have been very lucky to have been able to have surgery. I am sorry to each and everyone of you for all you have been through and are continuing to go through. Thank you :)

    #86514
    gavin
    Moderator

    Hi Mary,

    Welcome to the site. So sorry that you had to find us all here and sorry to hear everything that you have been through so far, you sure have been through so much haven’t you. But I am glad that you have joined in with us all here as you are not alone in this now, we are all here for you and we care.

    Thanks so much for sharing everything with us and I hope that it made you feel even just a wee bit better getting that out. Here you are around people who so know what you are going through and how you feel. So you share as much as you want to and if it helps then please feel free to shout and screan as well if it helps!

    My dad never had surgery so I can’t share any personal experiences of that with you, he had PDT. But I know others will be along soon to share their surgical experiences with you. And it is great to hear that you were able to have surgery as many are not.

    Keep coming back Mary as I feel that coming here will be of great help to you. And remember that you are not alone in this now, you now have an instant worldwide family and we so care!

    My best wishes to you,

    Gavin

    #86513
    kvolland
    Spectator

    Hello Mary –
    Welcome to the family that no one really wants to be a part of but you will always be glad you found us. I know where you are coming from my husband was diagnosed with stage3b in May 2013 and just a few days later my then 19 year old son was diagnosed with thyroid cancer. I cannot even begin to tell you the amount of comments I got from people about being strong, not crying, etc. I wanted to collapse on my self and curl into a little ball and cry until it was over. It wasn’t an option. Luckily though I found these discussion boards and I can tell you there are some truly wonderful people on here. I have melted down more than once on here and felt better when it was done and gotten the support that I needed at the time.
    It sounds like the hard part is over for you…..surgery. And that is the number 1 best thing you can be told. And the big question for most people right now is to chemo or not. There are people who have gone both ways. My husband opted for 6 months of every 2 weeks Gemcitabine and Oxaliplatin then followed up with 25 doses or radiation and continuous infusiion 5FU. He wanted to do every thing he could keep it from coming back. He is now almost two years cancer free. And so is my son.
    Hang in there. Keep us posted.

    KrisV

    #86512
    dukenukem
    Member

    I think you have some people who mean well but are not aware of what it is like to have cancer. Of course you are going to cry. I was diagnosed 19 months ago and still have moments where tears are the only way I have to express myself. As far as making your children more “resilient”, xxxx. My mother died from cancer when I was 15. The only thing that got me through the next week was anti-depressants. That’s where my “strength” came from.

    Considering you got off to a bad start, you are doing great. Did they say why you have to have chemo? From what I’ve read here, adjuvant chemo is not unusual (my CCA is non-operable so I have no personal experience). Why the long wait – availibility of resources?

    You are not alone in Australia. There are several of us down there.

    Two bits of advice. First, find out the experience level of your onc. There is NO substitute for experience. Second, have him outline his total plan for you, with all the options, and “if-then” combinations. I learned from personal experience that these two are essential. You, and your main care-giver need to know what is going on and know where you are. Doctors are human and some have larger egos. Also, find out who your onc is going to to check his treatment. You want to make sure he is not flying solo. It would be a great idea to get a second opinion from an onc who is not part of this hospital system. I don’t know how practical that is, give the size of Australia and I have no idea what your insurance system is like.

    As Lainy said, you are now part of a large family. We have our warts and shortcomings, but the one thing we have in abundance is love. Welcome to the family Cousin.

    Duke

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