Lovely to hear from you again, sending love. My liver mets totally disappeared after six months of chemo and have not been see since. Lots on here doing great on maintenance regimes. It's all positive. So I don’t think of myself as having ‘incurable cancer’, rather that I have advanced cancer I’m controlling. @Jules2, how did you cope, who could you talk to that would have shared your experience? [Living with incurable cancer]. What's yours? It always takes me a little while to get my head around new news, but you will get your head around it and will be ready to fight again. We have a better doctor now. http://www.cancervic.org.au/trails for trials in Victoria But we all have faith in our teams, and hope for the future. It’s the waiting for this plan that is worse. Good luck to you and your husband. A group of people connected by something that we cannot change or control. What a lovely post. 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. 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’. But they do when there have been problems. Brain - cyber knife, Also if poss get to sea and beautiful places. and there is a group on this site. It is such an ordeal but if hopes and thoughts of strangers can help, then you have all of mine.Lots of love, Gypsyxxxxx, @spannerkate , hope things are going well. I have pleasantly surprised my team by having no evidence of disease (or being ‘in remission’) for over three years. Sometimes, when the cancer is found late, it might be hard to remove or kill all the cancer cells. Lots of love and best wishes to all of you. My condition is incurable, but manageable. I too have been told that mine is incurable and it will shorten my life. Eventually I will become resistant to the treatment but already there are newer treatments in clinical trial that are looking real good. Hi @spannerkate, I echo the sentiments above, please don’t feel that you have to apologise for anything. If the sickness can be controlled and he gets stronger anti sickness. I look at it as something to manage. His post-radiotherapy scans have revealed that his liver tumours are back with a vengeance, probably about the same if not worse than they were when he was diagnosed. 18521. We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people. I have just turned 50 this year. 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. http://www.australiancancertrials.gov.au for national trials I haven't been given any prognosis in amount of time but I have been given the impression that it's less than 12 months. The capox worked brilliantly for my husband and it will for yours too. Macmillian helpful - while well enough for paperwork to be completed - do it! Hey Rebecca This is done using long term / maintenance chemo which is really doing the job for me. OK, I am 55. 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. @Vicki Anne, thanks, you're right, at no age are you ready to deal with dying. PIP application with incurable cancer - Page 4. Anti-cancer treatments for various subtypes of cancer have significantly improved. Getting rid of as many as possible with chemo and then hoping they don't come back during breaks from treatment. Cancer is a life changer, or should I say arsehole. We currently don't know the exact spread of the cancer and will be undergoing a PET scan and keyhole surgery. Regards. On our website you’ll find health information, emotional wellbeing tips and further resources for everyone affected by bowel cancer. 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! I love so much your stories that say I was told a month and I'm still here years later. Im someone with ‘incurable’ cancer and would say it’s just a word, try not to focus on it. We are on watch and wait three monthly scans and the anxiety is sometimes crippling isn't it. 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. Cheers Vicki Ma mère a été diagnostiqué d'un cancer du poumon avec métastases au niveaux de plusieurs organes. Cheers Please don’t apologise, on this journey we do have to look after ourselves when we need to, it’s important. 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. A better choice is to discuss the likely results of such treatments and to … At the end of Feb I went in for an operation to remove the tumours in my Liver. One such organisation is the Warwick Foundation - http://www.thewarwickfoundation.org.au. The rest of the song is a bit melancholy I'm afraid. It is hard to be told something like that. Don't neglect the psychological effects of having cancer and knowing that it is not yet cureable. His article, The Median Isn't the Message can be found at http://cancerguide.org/median_not_msg.html. You never hear high blood pressure or diabetes described as ‘incurable’, but they are. Yes, that's where my forum name comes from. 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. 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. Is this you? Big hugs, Bowels clear (2 x op) my partner who is also young is fighting it fit.. of course after chemo he feels crap but he's doing very well.. i think that altho it sucks to have this disease at a young age you also have your youth on your side To me that means they haven't found a cure yet. He will get through chemo. Following expert clinical advice and consultation with professional bodies, NHS England have made the decision to stop the bowel scope screening programme. H, Hi Rebecca, Four days ago I was diagnosed with incurable bowel cancer. We still have a fight on our hands but we always have an aim to beat this. Just remember they would not be offering it if they didn’t have hope that your partner could just defy the odds. Our father was on the couch and weak, but he was gaining weight and getting through the chemo. I hope that's what happens to me!! No research, however, has explored in depth the role of appearance in the experiences of individuals who have incurable cancer. able cancer would perceive their self-efficacy and subsequent performance as better than nurses caring for patients with chronic conditions. Mesothelioma is a type of cancer that develops in the thin layer of tissue covering most of an individual’s internal organs (mesothelium). But I've had my future ripped away from me, I wanted to do so many things. Incurable Cancer is a term used when cancer can no longer be cured. Past few weeks have been mental for me and I'm now in the worst place possible. Also look at pension and all benefits blue badge so on Thank you everyone for your kind messages. In these unprecedented times, we know many of you are understandably worried and concerned. Was there a point when you realised you were outliving your sentence? Anyway, I can respond from the point of someone who has lived with an incurable cancer for the past twelve years and managed to maintain a fairly active life of good quality in that time. @spannerkate, I am too one of the long term chemo users. Sailor The cancer develops in four stages and is divided into four different types depending on where it occurs. As cancer catch-up strategies for the next stage of the pandemic are developed, it is essential that the often-forgotten needs of patients with incurable cancer are recognised and addressed. How did you stop the morbid thoughts popping into your head (if you had any) if you thought it was only a month? Liver op70% Back in June, our oncologist told Da ‘he would get him through this’ and although that was vague, this is all we wanted. That was some 22 years ago (now i have revealed my ancientness ... lol) I was given the possibility of a month to live or "x" amount of years and fortunately with that one I got the x. Increasingly, however, they are finding ways to control cancers, if not cure them. Lorna Whiston, 26, from Crewe, Cheshire, was forced to make the decision to give birth prematurely so she could have scans and receive treatment for breast cancer. His oncologist used the phrase "we will probably never be able to get rid of these". I am sorry to hear about your partner, but I do think this is at least partly to do with language. I have oesophageal cancer with secondaries to the liver. Hi everyone, Thanks so much for replying! 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." Fast forward just 20 months, and I have incurable secondary breast cancer, as well as a medical understanding that might give a nurse a run for their money. When i had my 6 week checkup with my surgeon (radical removal of my lymph glands) he asked if I was having any problems. Those facing incurable cancer and their loved ones may feel isolated, which can lead to feeling distanced from friends, family and colleagues. His team will find a way through this for Richard. The way I cope with this is to focus on controlling the cancer so I can get on with enjoying my life. Richard is struggling to accept this, and worries that he'll feel ill forever. 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. Where is your cancer may we ask? What can I do? Because it has spread is one reason they tell they cant cure you. He explores how these patients find meaning, cope, and build resilience. 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. Keeping both of you in my prayers. In a nutshell, my partner was diagnosed last December with rectal cancer with extensive liver mets, had 4 cycles of capox at the start of this year with excellent results, then after a lot of delays and deliberation 5 weeks of radiotherapy this summer. There are also a number of organisations out their that support younger adults -(those a lot younger than Harker and myself!!) The aim of this study was to describe the prevalence of perceived needs among this population. 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. Julie, Hi Rebecca Sophie Sabbage The Cancer Whisperer gets half a page in The Observer for her rejection of the idea of 'battling cancer', as if it was a new idea. However, I'm facing issues that I thought I'd face in my old age, things like tying up loose ends, not leaving things unsaid, writing my will, worrying if the God I pray to is listening, or even there. Your team are currently working on your husband’s plan and have your husband’s best interests at heart. My cancer has been responding well to chemo so far but it will never completely go away. Good spot by your husband! A small percentage of prostate cancers can move quickly to distant parts of the body. Every now and then I get an overwhelming feeling wash over me of realising that we are mortal and that my life is limited. Yeah I'm the same as you, the cancer has spread so that's basically why they can't cure it. Forum Cancer incurable,comment se comporter avec la personne malade? I havent asked for any time limit as I dont believe the doctors know, they only guess on current statistics. We all wish it was 100% of patients were cured. Hi there, Even in cases of incurable cancer, palliative or experimental therapies may improve quality and extent of life (see also Overview of Cancer Therapy). If you ever need to chat feel free to send me a direct message. 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. And has responded well to chemo, unbelievably well. Keep fighting and never lie down and never ever give up. LOL Here I am all philosophical. It was pretty scary for ten months, then I was in remission until recently. Bucks dreadful I'm sorry not to have been on here to support other people recently. I think he'll be starting the chemo next week. I find the specific focus on ‘cure’ in cancer quite interesting as there are so few diseases we can actually cure. © Bowel Cancer UK. Stay strong and sending love and hugs to you. This research aims to explore patients’ experiences and perspectives in relation … Objectives Existing research has established the importance of appearance concerns for individuals with cancer and identified appearance as an important factor in dying with dignity. My team do not think that I am curable but I am treatable which is different. Hi @spannerkate Is there anything I can say to him to soften this blow? 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. have hope and never give up! 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