Discussion Board Forums Introductions! A bit about me

Viewing 15 posts - 1 through 15 (of 32 total)
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  • #86541
    middlesister1
    Moderator

    Moose-

    So close- so good to hear from you and best wishes coming your way for the last 3 to go by quickly.

    Take care,
    Catherine

    #86540
    lainy
    Participant

    Hey, Moose, good to hear from you and just hang in and hang on as 3 rounds will go by swiftly. Thanks for the update and wishing you all the best!

    #86539
    moose
    Participant

    HI,

    I’ve now had 15 rounds of gemcitabine and 3 more to go….I can do this….I have to keep reminding myself every day as its getting harder. I still have my good and bad days along this roller coaster ride, but am so grateful for the treatment Ive received.

    #86538
    moose
    Participant

    Thank you very much Anne-Marie, Genevieve, Julie and Rain for writing to me. I wasn’t expecting that and I feel very touched that you took the time to write. Thanks for reassuring me that you also felt pain, I actually have an appointment tomorrow with my surgeon so will ask him about it too.
    Rain I am really sorry to hear about your Dad, I would like to email you some questions about him if that is ok.

    Thanks Anne-marie for your message. I read about your story and you have had to go through this TWICE which must have been devastating. HOW are YOU now?

    I am just about to leave for chemo, my 9th treatment and i have 9 more to go. I am finding it increasingly hard, and i know i am lucky to be having chemo, when others can’t.

    Thank you so much for caring xoxoxox

    #86537
    rain
    Member

    Hello Moose,

    I just wished to let you know that my father is curently battling CC and also lives in Melbourne.

    Please feel free to contact me with any questions etc you have.

    My greatest piece of advice is to get as many opinions as possibile.

    I am already very pleased that your medical team is offerring you adjuvant chemotherapy. When my dad had his Whipples operation in 2012 they did not offer chemotherapy as he had clear margins and also clear lymph nodes. I asked for a second opinion at the time and they also stated no need for chemotherapy. I wish I had found this board before as maybe I would have challenged the decision before (all medical articles I read stated no evidence for chemotheray so I thought was ok).

    I wish you all the best,
    Rain

    #86536
    iowagirl
    Member

    Moose,

    Yes, I had the pain around the incision and under the ribcage you mentioned following the removal of my left lobe. The nature of the surgery is that they’re working around the diaphram and ribcage and the manipulation of everything can cause pain in the lower rib cage area. I had transient pain around my main incision (Laproscopic surgery…but one incision was about 4 inches long) for a number of months after surgery. The oncologist said it was likely nerve issues caused by cutting the nerves and it would eventually settle down. It did. After my GP read the surgical report description , which is a very detailed description of each step of the surgery that they did, she said that she was amazed at what all they did while they were in there doing the surgery and it was no wonder that I hurt. Hang in there….it will get better.

    #86535
    genevieve
    Participant

    Hi Mary,

    My husband has had pain after a resection, around the scar, and the surgeon and GP also said it was nerve pain and could take months to completely go away. It did go away after a while, and he was reassured when the next scan showed nothing. He has also had pain at times from incisional hernias. I would talk to the doctors again if you are worried.

    Best wishes,
    Genevieve

    #86534
    anna-marie1
    Participant

    Hello Moose. I am just curious to know how you are? I hope you are coping well. Please let us know.

    #86533
    moose
    Participant

    Thank you Julie and Lainy. I appreciate your comforting words and understanding.
    I thought of your words as i was having the PIC line put in, that nothing is as bad as you thought it would be, it turned out it was ok. It wasn’t as bad as I thought but I still feel quite emotional about it though.
    I have now had 2 lots of chemo and seem to be handling it really well. Third lot tomorrow.

    I am very worried as I have pain in my right side, lowest rib and around the centre of my scar. I asked both my surgeon and oncologist who said this was normal ‘ for this kind of surgery’. The oncologist thought it could be nerve damage, which wold repair itself. I know i am being extra cautious but it is very painful esp at night. I do take pain relief still as required. Has anyone else experienced this after surgery ( keeping in mind my surgery was on my left lobe, but my right side was biopsied)
    I would appreciate your responses of you have experienced this.

    Thanks again

    #86532
    lainy
    Participant

    Hello Moose, fabulous news about your insurance , I am sure it relieves a lot of stress!
    My husband had a PIC line and it was great. They never had to poke him anywhere as they could do their blood draws from it as well as use it for Meds. I have found that when I am the most scared, it turns out to be nothing or not as bad as I thought it would be. Keep your good news coming, it always makes our day to read good stuff!

    #86531
    iowagirl
    Member

    Moose…..I discovered that I became less and less tolerant of pain as I went along with treatment, I let the people doing the procedures know if it was really hurting me. Before, I had a very high tolerance for pain.. But, I think that this is something that just keeps assualting us…over and over….until it wears down our resistance. I’m sure that you (and I) could handle some pretty high pain once in a while (note, that you already exhibited that before you were diagnosed), but it’s a far different thing when it becomes chronic. And yes, it didn’t take long to realize that 1. my caregiver was already dealing with plenty and didn’t need to hear about the pain I had 2. friends and family often just don’t want to hear the truth either….and from them, you hear, “You’re so strong…..you can do it.” Uh nope….not THAT strong….not without some complaining…at least a whimper. Brave has nothing to do with this……there are things that are done to us that HURT….either physically or emotionally. It’s okay to tell us what’s “hurting” you…..and truthfully, we’re all scared here now and then…and we “get it” .

    Fantastic news about the insurance clause with your job and getting a percentage of your pay. That will allow you to take it a little easier and not try to push it if you don’t feel like it some days. So happy that happened for you.

    Julie T.

    #86530
    moose
    Participant

    Thanks Lainy and Duke. We are very lucky in Australia and I don’t have to pay for treatment, it is provided for by the government which is really amazing. I have been looking into payment from my super animation fund and have just found out they will pay me a % of my wage as I had an insurance clause with them. Once all this is sorted, this will mean I can take the time off work, without needing to worry financially. I am so relieved and I am just so grateful that I started a new job 2014, which had this super animation fund attached to it, as otherwise we would have been without. This has only just happened and I can’t tell you the relief I feel.

    I started chemo last Tuesday, it was ok but was burning going in and the nurse kept stopping it and flushing it with saline etc. on friday my arm was covered in red marks, painful and tender. I rang the ‘chemo line’ the nurse was concerned that the chemo had leaked into my tissues ( and i don’t mean Kleenex ;) ) To avoid this happening again, I will have a picc line put in tomorrow. Has anyone else had one of these put in? I am pretty scared about it, I didn’t want the continual reminder that I had CC and I am becoming increasingly pathetic when it comes to pain ( of course to my family and friends Im brave and don’t whinge, but here on this website…well I’m a sook and Im scared)

    Thanks for listening xoxo

    #86529
    dukenukem
    Member

    Do you have any company or government funded disability payments?

    I was on gem only after months of carbo/gem. It was two weeks on and one week off.

    Duke

    #86528
    lainy
    Participant

    Mary, no apologies ever needed, we call it like we see it! Feel free to come here and rant, rave, vent or advise. This is your site and we are all here for you! Good luck on the chemo!!

    #86527
    moose
    Participant

    Thanks Julie, it is someone used to dealing with oncology patients so I think it will be really helpful.

    SO tomorrow I start chemo, 6 months of gemcitabine, once a week for 3 weeks then a week off. This is probably not unusual, but for me, I was/am totally shocked. I thought I might have chemo once a month for 4 months and be able to work during this time. This means NO WORK until at least September. As the main income earner, this is very confronting and scary. Im still trying to come to terms with the fact that i actually have cancer….but this makes it more real…. I still can’t believe it. Having 6 months of chemo also makes it more serious!

    Rereading this, I realise this sounds very selfish to all of you who are struggling to live and that I am truly blessed to be in such a good position to even consider work. I am so sorry to all of you who have CC and are struggling so much more than me.

Viewing 15 posts - 1 through 15 (of 32 total)
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