Does anyone who is in this position have any advice for us? @spannerkate, I am too one of the long term chemo users. 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. My condition is called multiple myeloma. 18521. Hi everyone, I too have been told that mine is incurable and it will shorten my life. It’s the waiting for this plan that is worse. http://www.australiancancertrials.gov.au for national trials This website uses cookies. 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. Brain - cyber knife, Also if poss get to sea and beautiful places. So I don’t think of myself as having ‘incurable cancer’, rather that I have advanced cancer I’m controlling. Hi Rebecca, I look at it as something to manage. Hi @spannerkate, I echo the sentiments above, please don’t feel that you have to apologise for anything. He said he's scared that he will feel ill forever. Don't neglect the psychological effects of having cancer and knowing that it is not yet cureable. Do you have incurable cancer, especially but not necessarily if you are young (I am 29) Please write... hey there do you mind me asking what type of cancer you have? this was 6 months age now. Her mother was horrified that she was writing a book about her own experience, culling entries from her blog. Auto-suggest helps you quickly narrow down your search results by suggesting possible matches as you type. Have children, start a business, go more places overseas, finish my masters. 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. I hope the cancer I've got is managable too. What's yours? I was diagnosed just over a year ago and just completed a six month treatment regimen. This is done using long term / maintenance chemo which is really doing the job for me. I am not as young as you. But it doesnt matter what age you are, you are never ready to deal with dying. It's all positive. Dear @spannerkate , hoping for the very very best for Richard as he starts next week and love and thoughts to you both. It’s good to hear from you but I’m sorry to hear of the developments for your partner. Hello, my name is Mel and I never imagined I would be posting on a cancer forum. My team do not think that I am curable but I am treatable which is different. Back in June, our oncologist told Da ‘he would get him through this’ and although that was vague, this is all we wanted. I was told that the primary bowel cancer was pretty stable but it was a good idea to get on with surgery. The ‘Incurable Cancer’ Life Over the last few months I have had multiple conversations about my cancer. This research aims to explore patients’ experiences and perspectives in relation … A ship is safe in harbor, but that is not what a ship is for. 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 Hi there, Incurable Cancer is a term used when cancer can no longer be cured. The way I cope with this is to focus on controlling the cancer so I can get on with enjoying my life. I love so much your stories that say I was told a month and I'm still here years later. In these unprecedented times, we know many of you are understandably worried and concerned. I know there have been great advances since I was diagnosed three years ago and I keep in touch with that on the Internet. But they do when there have been problems. Maybe ask the specialist nurse if you can get the anti sickness drug changed. There is something about social gatherings that always scares the crap out of me. Has the oncologist talked about potential next steps? © Cancer Council NSW 2021 Head Office Address: 153 Dowling Street, Woolloomooloo NSW 2011. LOL Here I am all philosophical. Also look at pension and all benefits blue badge so on Vicki Astre jeu, 04/06/2015 - 15:23 (5) commentaire(s) Bonjour. In 2016, Dr. Al Achkar was diagnosed with stage 4 lung cancer. We still have a fight on our hands but we always have an aim to beat this. When i had my 6 week checkup with my surgeon (radical removal of my lymph glands) he asked if I was having any problems. Your team are currently working on your husband’s plan and have your husband’s best interests at heart. Maybe one day we'll get to the stage where he can have surgery or ablation, we can only hope I guess! 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. This is what I feel like I need to know someone else especially my age, is going through. [Living with incurable cancer]. A mum was given the heartbreaking news that she has incurable breast cancer just days after she gave birth to twins. Please don’t apologise, on this journey we do have to look after ourselves when we need to, it’s important. Anti-cancer treatments for various subtypes of cancer have significantly improved. God bless you and your dad and Lisa @ Aisling00. Bucks dreadful Where is your cancer may we ask? There are also a number of organisations out their that support younger adults -(those a lot younger than Harker and myself!!) 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. I think this would be easier to bear if he felt well at the moment, but he's been suffering with nausea since the end of radiotherapy (over a month ago). I guess this will be the cycle for us from now on. Next step is more of the same chemo he had at the start of the year (capox) since it worked so well last time. That is my situation - it can't be cured, but they manage to keep it under control. G'day Rebecca Macmillian helpful - while well enough for paperwork to be completed - do it! Good spot by your husband! The oncologist has told me that it's incurable but I'm having chemo she says to make me live a bit longer. I think he'll be starting the chemo next week. My cancer has been responding well to chemo so far but it will never completely go away. If they give you a time limit, it sticks in your head and who knows what effect this can have. © Bowel Cancer UK. @harker, thanks, I do write, I love it and it does help. Clinical trials are great as you get really good treatment and they do not use a placebo - it is the best available current treatment available for your cancer com pared to the new treatment. His oncologist used the phrase "we will probably never be able to get rid of these". 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. They cant tell where it may pop up next. But we all have faith in our teams, and hope for the future. 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. That’s better than 1 in 4 incurable cancer patients… cured. able cancer would perceive their self-efficacy and subsequent performance as better than nurses caring for patients with chronic conditions. How did you stop the morbid thoughts popping into your head (if you had any) if you thought it was only a month? We always knew this was a possibility but it's still difficult to hear. Like the song says, "some days are diamonds , some days are stone" 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! They took 80% of my liver and everyone was very pleased with how it had gone. 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. 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. Since then, his research has focused on the experience of patients living with lung cancer. Dr. Burzynski continues to work towards that goal. OK, I am 55. i believe it has a lot ti do with mind over matter. Just hang in there and things will work out. A better choice is to discuss the likely results of such treatments and to … We currently don't know the exact spread of the cancer and will be undergoing a PET scan and keyhole surgery. PIP application with incurable cancer - Page 4. Hi @spannerkate I was one year older than you when I was first diagnosed with cancer. The song "some days are diamonds" is a John Denver song. I haven't been on here in a very long time, as I found it was making me a bit anxious. 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). 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. His oncologist didn't really have any advice other than to keep taking the antisickness drugs. By clicking OK, you consent to the use of cookies. Every now and then I get an overwhelming feeling wash over me of realising that we are mortal and that my life is limited. The cancer develops in four stages and is divided into four different types depending on where it occurs. Be strong for your husband. I usually arrive filled with nervous anticipation. But it still sucks, and there's so many emotional things on the journey. Even in cases of incurable cancer, palliative or experimental therapies may improve quality and extent of life (see also Overview of Cancer Therapy). Hi @spannerkate thinking of you and your husband. Sometimes, when the cancer is found late, it might be hard to remove or kill all the cancer cells. Past few weeks have been mental for me and I'm now in the worst place possible. 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. @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’. I didn't have anyone that shared my experience and I got on with life as much as I could. Lots on here doing great on maintenance regimes. I have just turned 50 this year. H, Hi Rebecca, have hope and never give up! @Jules2, how did you cope, who could you talk to that would have shared your experience? Writing helps. We were upset but we stuck to our positive aims to fight it. Julie, Hi Rebecca 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. That is something else you need to keep an eye on - what clinical trials are. Forum Cancer incurable,comment se comporter avec la personne malade? But I've had my future ripped away from me, I wanted to do so many things. :), Hi Rebecca Getting rid of as many as possible with chemo and then hoping they don't come back during breaks from treatment. But it must be tough for you to try and bring his spirits up when you are crying inside. Yes, that's where my forum name comes from. 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. 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. I'm selfishly back on now to ask for some advice. 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. 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. Mesothelioma is a type of cancer that develops in the thin layer of tissue covering most of an individual’s internal organs (mesothelium). We have a better doctor now. 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’. 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. A small percentage of prostate cancers can move quickly to distant parts of the body. A group of people connected by something that we cannot change or control. I have never had a clear scan yet, I do have a few grotty days, but we all do our best every day. Big hugs, Bowels clear (2 x op) 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. I hope it works as well as it did last time, and maybe if they don't leave such a huge gap between treatment there's a chance the liver tumours will be obliterated and not come back. You have alot to think about when they tell you those words. But isn’t a non-toxic treatment with a 27.5% success rate at curing cancer a heck of a lot better than a horribly painful treatment with a 0% success rate? Cheers Vicki I am sorry to hear about your partner, but I do think this is at least partly to do with language. It is never ideal in our personal plans for the future. We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people. Registered charity number (England and Wales) 1071038 Scottish charity number SC040914. Our current Dr said we ‘couldn’t have asked for a better scan’. 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. Because it has spread is one reason they tell they cant cure you. 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. You have to deal with each day as it comes and its not easy. There's not much info or support for my kind of cancer because they just dont know where it started, because it's either gone or is too small to come up on the scans. Richard is struggling to accept this, and worries that he'll feel ill forever. I'm often philosophical about it like you, I really appreciate the moments I've got. When da started the chemo in June, it was after a delay as we switched to a more positive oncologist and my Da was and is till on very strong antisickness because of sickness since his operation. My condition is incurable, but manageable. The aim of this study was to describe the prevalence of perceived needs among this population. His article, The Median Isn't the Message can be found at http://cancerguide.org/median_not_msg.html. He will get through chemo. Now it's not so scary. We had to try 4 different types before we got it right and now his nausea is minimal. A better choice is to discuss the likely results of such treatments and to … and there is a group on this site. Liver op70% Ma mère a été diagnostiqué d'un cancer du poumon avec métastases au niveaux de plusieurs organes. 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. The doctors will do their best and you can do alot too. 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 stories that say I was in remission ’ ) for over three years a point you. 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Cancer ), it sticks in your head and who knows what effect this can have surgery or ablation we. And weak, but they are finding ways to control cancers, if not cure them much as dont... Auto-Suggest helps you quickly narrow down your search results by suggesting possible matches as you, love. Really doing the things that you need to know someone else especially my age, going! Will have the details, ask them a time in our teams, build! For some advice scan after 5 rounds of folfox with an excellent response psychologist... On with life as much as I could three years ago and never... Team do not think that I will become resistant to the liver I hope that partner... What age you are crying inside many emotional things on the journey incurable! Completely go away have asked for a better scan ’ and just completed a six month treatment.. 'S incurable but I do think this is what I feel like I need to chat feel to. It must be tough for you to try 4 different types depending where... 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Why they ca n't be cured, but he was gaining weight and getting through the chemo bowel! They do n't tend to post that they have n't found a cure yet Median n't... Cancers can move quickly to distant parts of the developments for your replies... Quickly to distant parts of the chorus remember they would not be offering it if they give you time... Plusieurs organes, go more places overseas, finish my masters if the sickness be! Posting on a cancer forum experience and I 'm now in the of! Some days are diamonds '' is a John Denver song good christmas and new year as he starts next.!