Our father was on the couch and weak, but he was gaining weight and getting through the chemo. 18521. That’s better than 1 in 4 incurable cancer patients… cured. Hi Rebecca, I was told that the primary bowel cancer was pretty stable but it was a good idea to get on with surgery. I'm sorry not to have been on here to support other people recently. And has responded well to chemo, unbelievably well. able cancer would perceive their self-efficacy and subsequent performance as better than nurses caring for patients with chronic conditions. Is this you? What's yours? A ship is safe in harbor, but that is not what a ship is for. The first aim of the current study was to explore how nurses perceived their self-efficacy and performance in sup- porting self-management activities in patients with incurable cancer. This is done using long term / maintenance chemo which is really doing the job for me. Particularly with breast cancer, there are very good treatments indeed, and people can live for very many years with secondary breast cancer and function very well. Four days ago I was diagnosed with incurable bowel cancer. Next step is more of the same chemo he had at the start of the year (capox) since it worked so well last time. He explores how these patients find meaning, cope, and build resilience. You have alot to think about when they tell you those words. The worse my pain gets though, the more I get the feeling that its not going so well and my last scan wasn't good. Cancer that is incurable and eventually terminal. Lovely to hear from you again, sending love. http://www.australiancancertrials.gov.au for national trials Increasingly, however, they are finding ways to control cancers, if not cure them. and there is a group on this site. What a lovely post. It’s the waiting for this plan that is worse. We were told by a oncologist that there was nothing she could do for my dad so we switched back to specialist hospital. At the end of Feb I went in for an operation to remove the tumours in my Liver. I have never had a clear scan yet, I do have a few grotty days, but we all do our best every day. Like the song says, "some days are diamonds , some days are stone" When i had my 6 week checkup with my surgeon (radical removal of my lymph glands) he asked if I was having any problems. But they do when there have been problems. Be strong for your husband. I just like those two lines which are part of the chorus. Hi there, I wanted to find some people, or someone who's been told they're cancer is incurable, or that their chances aren't looking very good. The cancer develops in four stages and is divided into four different types depending on where it occurs. Facing an incurable cancer diagnosis can feel overwhelming and scary and you will probably be experiencing a wide range of emotions and thoughts, which can be difficult to control. Lung (both lungs ablation) I know there have been great advances since I was diagnosed three years ago and I keep in touch with that on the Internet. His oncologist used the phrase "we will probably never be able to get rid of these". OK, I am 55. You have to deal with each day as it comes and its not easy. Many folk on here are doing very well on maintenance or permanent chemo and there is a good chance that Richard will do the same. I get jealous and resentful of my friends (although so grateful of them)for having beers on the weekend and bitching about work like I use to. Yes, that's where my forum name comes from. Having an incurable cancer is of course also serious but there is often lots of treatments available to keep the illness under control. Was there a point when you realised you were outliving your sentence? In 2016, Dr. Al Achkar was diagnosed with stage 4 lung cancer. However, physicians should resist giving ineffective therapies. God bless you and your dad and Lisa @ Aisling00. Lots of love and best wishes to all of you. Yeah I'm the same as you, the cancer has spread so that's basically why they can't cure it. this was 6 months age now. The way I cope with this is to focus on controlling the cancer so I can get on with enjoying my life. But it must be tough for you to try and bring his spirits up when you are crying inside. :), Hi Rebecca We were upset but we stuck to our positive aims to fight it. The song "some days are diamonds" is a John Denver song. One such organisation is the Warwick Foundation - http://www.thewarwickfoundation.org.au. I am sorry to hear about your partner, but I do think this is at least partly to do with language. Good spot by your husband! Dear @spannerkate , hoping for the very very best for Richard as he starts next week and love and thoughts to you both. We all wish it was 100% of patients were cured. I dont know where I will be in 6 months or 3 years, but I am here at the moment and thats what counts really. Keep fighting and never lie down and never ever give up. [Living with incurable cancer]. The rest of the song is a bit melancholy I'm afraid. It is never ideal in our personal plans for the future. Following expert clinical advice and consultation with professional bodies, NHS England have made the decision to stop the bowel scope screening programme. We are in the same position with my Dad ( extensive liver mets) he is on Capox at the moment and has also suffered with nausea. We always knew this was a possibility but it's still difficult to hear. Share your story in our online journal space. Hope you had a good christmas and new year. Hold onto hope that the capox will work. Limited research has investigated the specific needs of patients with advanced incurable cancer. In that moment, I became a member of a community. @spannerkate As @lisa7 has said our Da was told the 6 liver mets can only be controlled and the oncologist was very very pessimistic and used the word ‘incurable’. He's collected the stories into a book, "Roads to Meaning and Resilience with Cancer: 40 Stories of Coping, Finding Meaning, and Building Resilience While Living with Incurable Lung Cancer." Last year my main objective was ‘cure’ In August 2016 I had nothing to do with Breast Cancer Care, no knowledge about breast cancer drugs, and only a cursory understanding of ‘metastatic’. :). But it still sucks, and there's so many emotional things on the journey. @harker, thanks, I do write, I love it and it does help. My condition is called multiple myeloma. Writing helps. Even in cases of incurable cancer, palliative or experimental therapies may improve quality and extent of life (see also Overview of Cancer Therapy). Just remember they would not be offering it if they didn’t have hope that your partner could just defy the odds. @maddie86, I'm so glad your partner is getting better! It's very frustrating to think that there were so few after the last lot of chemo but now they've all come back again. Just by writing you've made me feel pretty good. Mesothelioma is a type of cancer that develops in the thin layer of tissue covering most of an individual’s internal organs (mesothelium). @spannerkate, I am too one of the long term chemo users. my partner got diagnosed around 6 months ago and his oncologist said it was 'unlikely cureable' yet six months on we are told chemo is working and they can operate and things are looking good.. i believe only god can decide not the doctors! But I've had my future ripped away from me, I wanted to do so many things. A better choice is to discuss the likely results of such treatments and to … So I don’t think of myself as having ‘incurable cancer’, rather that I have advanced cancer I’m controlling. The doctors will do their best and you can do alot too. The way I cope with this is to focus on controlling the cancer so I can get on with enjoying my life. What can I do? Hey Rebecca I haven't been on here in a very long time, as I found it was making me a bit anxious. Cheers Vicki I have been on permanent chemo for three and a half years but nevertheless am doing well and better than expected (I am touching wood as we speak). We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people. Now I'm ancient - I'm even older than Harker, so that is saying something - but I agree with Harker that the word incurable means that they haven't found a cure yet. My cancer has been responding well to chemo so far but it will never completely go away. Because it has spread is one reason they tell they cant cure you. Well of course, I had gone from not being able to pick up a pen to umpiring basketball and I couldn't do jump balls ... that was a problem! I usually arrive filled with nervous anticipation. Stay strong and sending love and hugs to you. One thing that often came up during these conversation was that maybe it isn’t very clear to people I interact with, my readers and sometimes family member as well, what it really means to have an ‘incurable cancer’. It’s taken a long time, and lots of counselling, but I’ve now come to terms with the fact that this cancer will kill me. @Jules2, how did you cope, who could you talk to that would have shared your experience? It was pretty scary for ten months, then I was in remission until recently. I guess this will be the cycle for us from now on. Im someone with ‘incurable’ cancer and would say it’s just a word, try not to focus on it. Sometimes, when the cancer is found late, it might be hard to remove or kill all the cancer cells. I was diagnosed just over a year ago and just completed a six month treatment regimen. A better choice is to discuss the likely results of such treatments and to … Anon. I think he'll be starting the chemo next week. Don't neglect the psychological effects of having cancer and knowing that it is not yet cureable. They cant tell where it may pop up next. I have recommended to others on this site an essay by Stephen Jay Gould - my generation knew him as a somewhat popular scientific writer, but he was diagnosed with an incurable cancer with a life expectancy following diagnosis of eight months - he went on to live a further twenty years. Her mother was horrified that she was writing a book about her own experience, culling entries from her blog. If the sickness can be controlled and he gets stronger anti sickness. I hope that's what happens to me!! I was one year older than you when I was first diagnosed with cancer. G'day Rebecca Has the oncologist talked about potential next steps? Our current Dr said we ‘couldn’t have asked for a better scan’. Bucks dreadful So I don’t think of myself as having ‘incurable cancer’, rather that I have advanced cancer I’m controlling. © Cancer Council NSW 2021 Head Office Address: 153 Dowling Street, Woolloomooloo NSW 2011. I NEVER give up hope, I'm always on the side that says if the drs don't know what cancer I've got, then they don't know how long I've got, or how things are going to go. Back in June, our oncologist told Da ‘he would get him through this’ and although that was vague, this is all we wanted. The ‘Incurable Cancer’ Life Over the last few months I have had multiple conversations about my cancer. Lots on here doing great on maintenance regimes. It's all positive. Hi there, We had to try 4 different types before we got it right and now his nausea is minimal. Eventually I will become resistant to the treatment but already there are newer treatments in clinical trial that are looking real good. Thanks so much for replying! Every now and then I get an overwhelming feeling wash over me of realising that we are mortal and that my life is limited. Auto-suggest helps you quickly narrow down your search results by suggesting possible matches as you type. Forum Cancer incurable,comment se comporter avec la personne malade? Have children, start a business, go more places overseas, finish my masters. Hi @spannerkate thinking of you and Richard. By clicking OK, you consent to the use of cookies. Richard is struggling to accept this, and worries that he'll feel ill forever. It is normal to find it more difficult to tell your family how you feel, your thoughts, fears and feelings, in order to try and protect them at this difficult time. I'm often philosophical about it like you, I really appreciate the moments I've got. I have cancer of unknown primary that has metastasised to my lymph glands, liver and bones I think the bones, the drs are pretty non committal about the bones. You can find out more about clinical trials, where they are available and whether or not you are eligible at two websites: @spannerkate really sorry to hear this. Liver op70% Same as me, they cant tell me anything about what the cancer I've got is going to do and when they do, they're wrong. The diagnosis of incurable cervical cancer does not mean that you need to stop doing the things that you enjoy in life. He said he's scared that he will feel ill forever. http://www.cancervic.org.au/trails for trials in Victoria It’s good to hear from you but I’m sorry to hear of the developments for your partner. His writing is based on interviews he did with 39 patients who live, like him, with incurable ca ncers. I wanted to find some people, or someone who's been told they're cancer is incurable, or that their chances aren't looking very good. Sailor Sending you both best wishes and hugs. The NHS has set out how it plans to return essential cancer services to pre-COVID-19 levels in a new plan called The Cancer Recovery Plan. My liver mets totally disappeared after six months of chemo and have not been see since. So although he didn't use the word 'incurable', that sort of sounded like what he was saying, especially as we went on to talk about maintenance chemo. I love so much your stories that say I was told a month and I'm still here years later. The cancer may have: Spread to other parts of the body; Grown to be too big for treatment to work; Have come back after treatment; Treatments do not always control cancer. keep fighting and never give up! I can take each moment as it comes and deal with it one at a time. Please take very good care and stay in touch, but only when you want to, Kim, How very irratated @spannerkate this s ---t site does not save last time, Brain bowel liver lungs and some thing else and I will know it will kill me BUT, So sorry to read your update @spannerkate , but rem chemo worked wonders before and can do again! He will get through chemo. I have pleasantly surprised my team by having no evidence of disease (or being ‘in remission’) for over three years. Vicki There are also a number of organisations out their that support younger adults -(those a lot younger than Harker and myself!!) Now it's not so scary. My team do not think that I am curable but I am treatable which is different.