Forum for lung cancer patients and their carers

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Forum for lung cancer patients and their carers

Hi guys this is my first post although have often looked at the lungevity forum and this one on occasion. i was diagnosed with stage iv lung cancer in June 07. I had a nagging  cough that wouldn't go away and my GP was careful about unnessessary xrays as I have also had Hodgekins disease 28 years ago and underwent 6 weeks radiatherapy. i did smoke but was never a heavy somker speant more time trying to stop than smoking and did stop a very long time ago. My cancer is non operable and not cureable, i underwent 4 cycles of chemo and only 10 sessions of radiatherapy because of my previous dose. at this stage i refuse to accept there is no hope, someone has to be the first surviver. I am not trying to fool myself but am determined to do all i can to improve my overall health and immune system. my first lot of oncologists at the clinic made me feel like a not very important statistic. they give you all the info tell you your going to die sooner rather than later then when you ask what you can do to help your self they say "nothing really just eat healthy and stay positive". how do they expect a person to be positive when thy give you nothing to be positive about. i don't want to hear them tell me about palliative treatment i want to feel they are trying there best to treat me for a possible cure. if when the times comes ans i am told there is nothing more that can be done then so be it i will deal with it when it happens. i have continued to work althrough my treatments i think i was lucky and did not have as much trouble as some people do with chemo and the radiation was not enough to cause too much bother. i am sorry to have ranted on but i still get so angry at the unfairness of it all. having lung cancer you are made to feel guilty and i actually get jealous of women with breast cancer. i know that is unreasonable but there is so much going on about breast cance and just those horrible adds on TV for lung cancer. again sorry for the rant. Dianne
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Forum for lung cancer patients and their carers

Hi Dianne - I don't think you're 'ranting'. It's hard to know what to say without sounding cliche. You're obviously strong and if anyone's going to beat lung cancer then I think you've got a really good shot at it!My mum was diagnosed about 6 weeks ago - it's non-operable and they're talking about palliative treatment- she's had radiotherapy and they're keeping an eye on the cancer to see how aggresive it is and she will probably have chemo (she's got the primary in the bronchia and some in the lung and in the liver).I'm new to all this and just trying to find out as much information as possible. Your post touched a nerve with me, don't really know why... maybe because you are doing everything you can to overcome this. sue
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Forum for lung cancer patients and their carers

Hi Dianne et al We feel for you, the doctors can be very insensitive and the stigma surrounding lung cancer is so unfair!  How have you been faring over the festive season?  We've found it hard to put on a cheery face and had a quiet xmas at home. My mother in law had a great day with the grandkids around and said it was her most relaxing xmas ever  (being a dog groomer she normally worked right up to xmas eve in the evening). You are right, there has to be survivors out there, no reason why you can't be one of them!  If you have time, get onto the lungevity forum and request the lungevity stories book - there is a story in there from Liz (and you can also reach her on the forum)....  She has stage 4 NSCLC too and participated in the Zometa trial....  Zometa is normally given to breast cancer patients for bony mets, but she was able to get on the trial.  She had such good results with her bony mets.  Erika nagged and nagged her onco until he sought approval to give her Zometa (it's still expensive)... unfortunately she had a bad reaction to her first infusion, which means no more for her. Young Matt was so inspiring.... he was an incredible advocate for lung cancer patients educating themselves (you are right that the docs just want to pigeonhole you into terminal and curable, then chart you on a stock standard plan of action) and fighting for the right to new treatments etc.  My mother in law only smoked for a yr or so when she was 18-19 and her lung cancer is either from passive smoking (her hubby died 7yrs ago fm throat cancer - was a heavy smoker) or industrial / job related (worked in vet industry).  Sad that my sister-in-law's hubby's dad has also recently been diagnosed with terminal lung cancer and he's a smoker, although it shouldn't matter whether people are or not!  There's such a stigma that you feel you have to justify statements all the time. The recent ads that were on tv were really upsetting as the ads were about blaming the cancer sufferer with smoking etc, but they didn't highlight the high statistics of passive smokers/non-smokers who get lung cancer.... We wrote off to the cancer council institute of NSW who made the ads.... haven't yet received a reply but noticed the ads are no longer running... so not sure if coincidence or not. Very alarming to read statistics of the high number of non-smokers who get lung cancer or lung disease!! Erika went to one of the look good feel better workshops and felt out of place as everyone except her and one other lady were breast cancer sufferers....  You're right to feel 'jealous' as there seems to be so much public awareness and support of breast cancer, yet so little of other cancers. Sorry for ranting and raving...  world is upside down again with Erika's rapid decline 4wks ago... new bony met in her left shoulder blade, with uncontrollable pain.  She went into the hospice (god bless those nurses and volunteers!) the week before xmas and they still haven't got on top of the pain yet... they are increasing her morphine and ketamine dosages on a daily basis, yet the pain seems to be escalating quicker than they can increase the pain meds. The irony of this all is that her primary in the lung has just about disappeared and she doesn't have any symptoms/breathing probs from it at all.... her symptoms come from her bony mets and associated bowel probs and nausea with high level of analgesics.... movicol is such a necessary evil. We're finding it really helpful to chat to the nurses and volunteers at the hospice, to deal with everything going on.  Erika feels the cancer has finally overwhelmed her, yet the docs and nurses feel she'll be ok once they get on top of the pain. I hope you are all able to spend time with your families and friends over the festive season. Take care Zoe
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Forum for lung cancer patients and their carers

Hi folks If you're looking for more specific information, resources and support just for lung cancer & disease patients and their carers. www.lungevity.com.au   The lungevity forum has been really helpful - the members are lung cancer sufferers and survivors who have been around the block with medications, treatments etc.  Very supportive group. I've only joined it recently, but am finding it very helpful to talk to Matt and other members.  For example we've found out about various trials that my rellie could be eligible for. Cancer can be such an isolating disease for the sufferer and their family, however, forums such as the cancer councils and lungevity bridge the isolation and make you feel part of a community again. Take care all Zoe
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Re: Forum for lung cancer patients and their carers

Everyone is entitled to their rant Dianne 🙂.   I agree with all you’ve said & wish you the best of what comes. 

 

Budgie

 

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