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    If you have popped over here from my facebook page could you please add comments in the blog rather than on the link on facebook itself. I dont want to worry YD unnecessarily Thanks. You can now use your facebook log in so you dont need to enter extra details if you like
  • All about Gertrude

    Gertrude is the name we decided to call my cancerous breast hence the title of this blog. Although I had to keep my breast through chemo and radiation due to the nature of IBC - once it 'blew up' it no longer looked like my breast and I couldn't wait to get rid of it. Calling it Gertrude was a way of seperating it from myself. This main page is where I write about the general goings on that relate to Gertrude, there is another page that are more a diary of treatments etc This blog is a public blog so although I am being very honest about my battle with Gertrude I have "changed names to protect the innocent" - because everyone can see it if you write comments on the blog pages please use the same abbreviations for other family member or friends that I do. Please feel free to ask questions if you want clarification because then other people who might have been wondering the same thing can read your question and our answers.
  • Abbreviations

    OH- Other Half (Hubby), OD- Oldest Daughter, MD- Middle Daugher, YD- Youngest Daughter, SB- soulja boi MD's fiance in the army (now ex fiance), OD's R OD's partner, BS- Breast surgeon whose initials just happen to be BS as well, BC- our GP (family doctor), Dr H- my medical oncologist, all other friends family etc will be referred to as initials etc
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What do we tell YD

13/08/08

Today, I had a meeting with YDs teacher and the Principal of the Special School along with the key house staff of YDs residential house to sort out what we were all telling her and so that we werent’t contradicting each other and getting her confused or giving her stress.  At the moment she knows that I have a bad bug in my breast that is making it very sore.  We are also telling her that I need very strong medicine for it that will make my hair fall out and that I will be sick until after Christmas.  We are not going to mention cancer at the moment as we feel that she will connect that with her grandma dying of cancer, and we dont want to put tha tstress on her unless we have to.  If she makes that connection herself between my hair falling out and cancer then we will be honest and say that that is what the bug is. But then we will follow it up with positive examples of people who have had cancer and survived.  We will prepare her for the removal of my breast closer to the time – possibly by saying that the bad bug or cancer (depending on how she knows of it by then) has to get cut out because the medicine didnt fix all of it.  She will only find out how life threatening this is if it becomes terminal and only if it is definitely terminal, and then we will prepare her for that eventuality as well.  there are actually a lot of good resource books for kids to explain all this so we may use some of those resources.

5/09/08

Last night we told YD that I had cancer.  She did make the connection with Grandma dying of cancer but we were honest and said that when they found Grandma’s cancer it was all over her body and it was too late to give her medicine to make her better.  We explained that mine was found soon enough and with medicine and surgery I will get better.  We showed her a couple of picture books that are very good explanations of families dealing with the Mum having breast cancer – that the mum loses her hair and feels sick but the hair grows back and Mum gets better.  I have got them on loan from the public library and the Cancer Society but have ordered a couple of them over the internet.  One’s coming from America so it might be a few weeks or more but the other should be here within a few days.  When they come YD will be able to have them at her house and at school to help her talk to her housemates/staff about it.  We decided to tell her that I had cancer for several reasons –  so that I didn’t have to hide things when she visited us at home, so that I didn’t need to watch my words so carefully around her,  so that if someone saw me with no hair and said that I had cancer she would already know and we would have controlled the way she was told to alleviate worry.  She seemed to understand things pretty well but now we will just keep reinforcing that the medicine etc is going to make me get better.  She now realises that I am sicker than she thought but that’s the thing that both the books we have got emphasised is that when you get cancer , you don’t necessarily look sick.  I think we have done the right thing in telling her as we have always tried to tell her the truth about things and explain things to a level she can understand  and I think she would have picked up on that there were things we were hiding from her.

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9 Comments

  1. Carol

     /  August 15, 2008

    Firstly I’d like to say I love the attitude and from a past experience when another person diagnosed with only 6 months to live who said at the time “I can’t go, as who will look after the farm and my 13 kids” – this was 30 years ago and the person who said it, is still alive today. I have always held the believe Gertrude can be overcome with positive thinking. As one of the caregivers of YD, I can say on behalf of myself and others involved that we appreciate the idea of the use of this site and will endevour to do all possible to assist in any way we can.

    Reply
  2. jaydub26

     /  August 15, 2008

    Thanks Carol,
    Had a bit of a discussion with YD about things on the way to and from Vibra-train. I think its the only time she really realises something is wrong because I cant touch her or the machine while she is doing it. have told her that I am going to start having medicine soon and that I would have to go to the hospital to have it and that I dont know what I will be doing with her the next couple of weeks. I did explain about the porta cath being put in – because she asked me if I was going to be put to sleep to have the medicine (she thinks of hospital in terms of her leg operations so I thought it was agood opportunity to explain that – that they weren’t going to put me to sleep for the medicine but they were going to put a little thing uner my skin that when I needed to have medicine they could just plug the medicine instead of using big needles all the time – she thought that would be a wonderful idea.

    Reply
  3. jaydub26

     /  August 24, 2008

    had another little talk with YD on Sunday. Explained that the medicine was going to make me feel yucky so I wouldnt see her next weekend. also told her that the medicine was so strong it would make my hair fall out but it was the only way to make my breast better. She seemed to understand all of it and we talked about the fact I’m going to wear hats and maybe a wig that makes it look like me but just with a different haircut. Didnt mention the “C” word and neither did she. If she does make tht leap when talking to any of you – you can confirm but use positive examples of people beating cancer.

    Reply
  4. Judy

     /  September 5, 2008

    Having been the person on duty when YD came home from hair cut, OH told me that she had been told about the C. After OH had left we sat down with a hot drink and discussed things just wanted to let you all know she seems to be taking it in her stride. We talked about the people we both know who have got better. Only had one little episode and that was when she realised that she had left her magazine and the books at your house as she had wanted to show them to me. Told her she could show me next week and seemed happy with that. I now think you did the right thing in telling her as now we can all take a hand in helping her to deal with this turn of events. Keep up the positive attitude you are amazing!!!

    Reply
  5. Jayne

     /  September 6, 2008

    I was priviledged to be in the company of YD the morning after you had told her about C.
    Apart from telling the group she was feeling unwell today (her way of explaining/dealing with your news?) her day flowed like any other.
    YD is positive and humorous just like you and together with amazing support from you family and friends Gertrude doesn’t stand a chance, ‘when the going gets tough the tough get going’. x

    Reply
  6. Sandra Armstrong

     /  September 6, 2008

    We explained my cancer(IBC) to my grandsons the same way. We told them there are lots of kinds of cancer. We told them mine was found early. We explained chemo. We explained the MRM. We explained radiation. This was all done in the simplest terms possible so that even the youngest could understand. The 8 yr old was upset at first, the 6 yr old was concerned about me having a booboo and being sick and the 4 yr old has thought the whole thing is a grand adventure. Last Christmas was spent with my grandsons and some of their friends wearing my wigs and hats and running through the house with them on. Their parents could have saved a fortune on gifts.

    Reply
  7. hetty

     /  September 10, 2008

    I like it that YD ended up with her ‘own’ page! This gives me the opportunity to tell you that YD has showed the last two or three weeks that she can be much more independent than she has showed the time I have known her. Bravo for YD!!
    YD does not (yet?) talk about your illness at all. The difference I have noticed in her though,since she knows you have cancer is that she had a few days where she changed extremely in mood from from very happy to very sad and back to very happy, back to sad and than happy again. She hasn’t mentioned it as the reason for not feeling well. At Fridays she usually says she is not feeling well though. She wouldn’t mind a four day work week I think 🙂

    Reply
  8. jaydub26

     /  September 10, 2008

    Hopefully as time goes on and she processes things a little more the mood swings won’t be quite so bad. I still think we did the right thing telling her and hope she wil understand things more as time goes on.

    Reply
  9. hi
    just wanted to pop in and say hi.. (im friends with cousin j in picton 🙂 ) ..and am caregiving for friend who unfortunately found gertrude too late 😦 ..admire greatly your honesty in dealing with this with yd.. my friend has an 8 yr old and one thing we too have stressed is that hes known whats going on..in the most less stressful way..now in these last weeks hes part of everything
    keep up the fight ..my love and best wishes to you..hope the shave today was as ok as it could be
    nicci x

    Reply

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