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karenl

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Posts posted by karenl

  1. Hi Jamie

    I was diagnosed with ulcerative colitis about two years ago, just after Mum died. I believe it was probably brought on by stress, although the doctor told me that they really don't know what causes it.

    I find that I can control it pretty well with medication, but it is definitely exacerbated by coffee and fatty/oily foods. The coffee especially - instant coffee doesn't seem to bother it too much, but I can't drink proper coffee at all anymore :( . Fresh fruit and veg aren't a problem for me.

    Hope this helps, and that your condition can be easily controlled.

    All the best,

    Karen

  2. Hi mary colleen

    Your husband's situation sounds pretty similar to what happened with my Mum. She had WBR in January/February, and by April, was still very fatigued and had great difficulty eating. Unfortunately, she continued to decline, but her condition was quite different from your husband's in that she still had a tumour in her chest and multiple metastases. We think its likely that her deterioration was due to tumour load as well as the WBR.

    I hope that your husband's condition improves, and that you get some useful advice from the onc's office.

    Karen

  3. Hi Kel

    Nice to see your face again!

    We are coming up to two years in August. It's hard to believe.... :(:(

    Glad to hear you are doing OK, and will be keeping you in my thoughts,

    Karen

  4. Hi Cheryl

    I rarely post these days, but I second everything that Ginny said. I too, would have done absolutely anything to help my Mum, and can clearly recall the utter despair and heartache that accompanied unfavourable scans and test results. I would like to think that the membership of this board is capable of understanding and forgiving the emotional outbursts of a man terrified of losing his wife. I hope you decide to keep posting, and I am sure that the great majority of people on this board would encourage you to do so.

    Karen

  5. I think it is very sad that woman is still so unhappy.

    And I think it is wonderful that many people are able to move on and find some joy in life again, although they still miss the presence of their loved one.

    I personally wouldn't condemn the first person for the fact that she is continuing to feel her loss so acutely. Some of the above responses seem a little harsh to me.

    Each one of us has different life circumstances, and a different relationship with the person we lost. I don't think it's right to judge another's grief as being 'too long' or 'too deep'. (I'm sure that I've read that statement many times on this very website :wink: )

    Don, I'm so glad that you are feeling that things look brighter for you now. :) .

    Karen

  6. Erin, I felt exactly the same way when the first anniversary was approaching. And I can't say I'm finding that the 'seconds' are much better than the 'firsts'. It all hurts. It still doesn't feel real, and I wonder if it ever will. I can still be so shocked by the fact that Mum isn't here that it takes my breath away.

    Val, that Haiku just about says it all :cry: .

  7. Hi Stephanie

    So sorry to hear about your Mom. There is a drug being developed by an Australian company which has apparently had some clinical success with treating meso. I looked at it a couple of years ago for Mum, as it is being trialled for a number of different types of cancer.

    The website is www.solbec.com.au

    Not sure if they are doing any trials in the US, but might be worth looking into.

    All the best,

    Karen

  8. Hello

    Mum had WBR for about 8 brain mets. She handled the actual treatments very well, with fatigue the major symptom, and that didn't start until some weeks after the treatment was finished.

    Mum went into a significant decline, physically and mentally, about 5 months after completing the WBR, but we are not sure what the real cause of this was. She had a head CT about 5 months after treatment, which showed continued shrinkage of her tumours. She hadn't been having any effective chemo for the previous six months, so her decline may well have been part of the disease process and toxic overload from her other tumours.

    I know how scary this is - but there are many people who have done well with WBR - I hope your Dad is one of them.

    All the best,

    Karen

  9. AMEN to that, Bill. Couldn't agree more.....

    Aaron, Mum was 66 at diagnosis with stage IV NSCLC, and she survived 25 months. I would love to see a re-vamp of the 'official' statistics! Good luck!

    All the best,

    Karen

  10. Just a suggestion.......when I was raising money for Relay For Life, I put a collection box at my local video store, and was getting about $6 per week, which I wasn't satisfied with! So I wrote a note on the top of the box which stated my name, and that I was collecting funds in honour of my Mum, and I started getting $25 per week in the box! It seems to make a difference when you personalise the issue.

    Good luck!

    Karen

  11. ((((Val)))))

    Happy Birthday!

    I do so understand where you are coming from. I was out with some friends for lunch at the beach, and later on in the day one of them asked me what was wrong, as I had apparently been very quiet. I was actually having a nice day with them, but I seem to just kind of sit on the periphery of the fun and laughter these days. And when I was thinking about it later, I realised that my life just feels 'heavy' now. Everything is tinged with sadness because Mum's not here, and worrying about Dad because he's on his own.

    I'm so sorry that you have to go through the birth of gorgeous girl number 2 on your own - I can't imagine how difficult the idea of that must seem right now. But you know what? You'll just do it, like you've done everything else on this journey. And you'll do it well. But it sure isn't fair that you have to.....and I know its not much comfort, but don't forget that WE are always right there, holding your hand.

    Love Karen

  12. Bill, thank you for your well-thought out posts, and for not getting offended and retaliatory when others opinions differed from your own. Your attitude helped to keep this thread in check when it could easily have become inflamed.

    I think that everyone here can identify with where you are coming from - we have all been horrified and dismayed by the dismal prognoses associated with both SCLC and NSCLC. It would be nice if we could do our research and share information without being confronted with the alarming statistics. Unfortunately, this disease is what it is. When Mum was diagnosed with stage IV NSCLC, we were devastated (and both my parents being doctors meant that they were only too aware of the implications of that diagnosis). We took the approach that, while we had no choice but to accept the diagnosis, we certainly didn't have to accept the prognosis....and we never did. Mum lived twice as long as her doctors predicted, and we never gave up searching for that magic bullet.

    With regard to the 'timelines' - I can certainly relate to your feelings about them. I know how thoroughly depressing it was, and still is, to see the numbers of people who aren't surviving this disease. But all it really takes is ONE person to be a long term survivor to give hope to everyone else who is diagnosed. And we have long term survivors of every type of lung cancer on this web-site!!

    Love Karen

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