We always knew this was a possibility but it's still difficult to hear. Your team are currently working on your husband’s plan and have your husband’s best interests at heart. 'Like the song says, "some days are diamonds , some days are stone"' I like that a lot, what song is it from? In these unprecedented times, we know many of you are understandably worried and concerned. Registered charity number (England and Wales) 1071038 Scottish charity number SC040914. Sailor 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. Even in cases of incurable cancer, palliative or experimental therapies may improve quality and extent of life (see also Overview of Cancer Therapy). 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." But it still sucks, and there's so many emotional things on the journey. In that moment, I became a member of a community. 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’. The capox worked brilliantly for my husband and it will for yours too. They cant tell where it may pop up next. And has responded well to chemo, unbelievably well. When i had my 6 week checkup with my surgeon (radical removal of my lymph glands) he asked if I was having any problems. Lung (both lungs ablation) You can find out more about clinical trials, where they are available and whether or not you are eligible at two websites: The way I cope with this is to focus on controlling the cancer so I can get on with enjoying my life. 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). 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. We were upset but we stuck to our positive aims to fight it. 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. It is never ideal in our personal plans for the future. I know there have been great advances since I was diagnosed three years ago and I keep in touch with that on the Internet. Lovely to hear from you again, sending love. Liver op70% keep fighting and never give up! Keep fighting and never lie down and never ever give up. Good luck to you and your husband. :), Hi Rebecca 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? I was one year older than you when I was first diagnosed with cancer. His writing is based on interviews he did with 39 patients who live, like him, with incurable ca ncers. Past few weeks have been mental for me and I'm now in the worst place possible. 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. That is something else you need to keep an eye on - what clinical trials are. I was told that the primary bowel cancer was pretty stable but it was a good idea to get on with surgery. He will get through chemo. If they give you a time limit, it sticks in your head and who knows what effect this can have. have hope and never give up! I didn't have anyone that shared my experience and I got on with life as much as I could. That is my situation - it can't be cured, but they manage to keep it under control. The way I cope with this is to focus on controlling the cancer so I can get on with enjoying my life. Yeah I'm the same as you, the cancer has spread so that's basically why they can't cure it. 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. This is what I feel like I need to know someone else especially my age, is going through. Can't think why I haven't responded earlier to your post, I guess there has been a lot happening in my life in the past few weeks. Keeping both of you in my prayers. Is there anything I can say to him to soften this blow? PIP application with incurable cancer. I too have been told that mine is incurable and it will shorten my life. This is done using long term / maintenance chemo which is really doing the job for me. 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. Thanks @Bear G @Lirio345 @Lawsey @charleyb and @Clancy for your lovely replies. © Cancer Council NSW 2021 Head Office Address: 153 Dowling Street, Woolloomooloo NSW 2011. What can I do? 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. 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. Lots of love and best wishes to all of 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! There is something about social gatherings that always scares the crap out of me. Dear @spannerkate , hoping for the very very best for Richard as he starts next week and love and thoughts to you both. http://www.cancervic.org.au/trails for trials in Victoria 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. Following expert clinical advice and consultation with professional bodies, NHS England have made the decision to stop the bowel scope screening programme. The folfox has worked on the liver metastases that were in both lobes. Our current Dr said we ‘couldn’t have asked for a better scan’. Astre jeu, 04/06/2015 - 15:23 (5) commentaire(s) Bonjour. Was there a point when you realised you were outliving your sentence? [Article in Dutch] Buiting HM(1), Linn SC, Smorenburg CH, de Kanter W. Author information: (1)Antoni van Leeuwenhoek, Amsterdam. Cheers Vicki 18521. The doctors will do their best and you can do alot too. A group of people connected by something that we cannot change or control. The diagnosis of incurable cervical cancer does not mean that you need to stop doing the things that you enjoy in life. We are on watch and wait three monthly scans and the anxiety is sometimes crippling isn't it. 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. Limited research has investigated the specific needs of patients with advanced incurable cancer. 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. Cancer Council NSW is registered with the Australian Taxation Office as an Income Tax Exempt Charity: Charitable Fundraising Authority No. You can get to see a psychologist on medicare - your GP will have the details, ask them. Because it has spread is one reason they tell they cant cure you. To me that means they haven't found a cure yet. G'day Rebecca 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. Richard is struggling to accept this, and worries that he'll feel ill forever. Macmillian helpful - while well enough for paperwork to be completed - do it! Vicki What a lovely post. 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. Julie, Hi Rebecca 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. 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. I am sorry to hear about your partner, but I do think this is at least partly to do with language. Regards. You never hear high blood pressure or diabetes described as ‘incurable’, but they are. Hold onto hope that the capox will work. A small percentage of prostate cancers can move quickly to distant parts of the body. I haven't been on here in a very long time, as I found it was making me a bit anxious. Anon. Sometimes, when the cancer is found late, it might be hard to remove or kill all the cancer cells. This research aims to explore patients’ experiences and perspectives in relation … 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. It's all positive. God bless you and your dad and Lisa @ Aisling00. Lots on here doing great on maintenance regimes. I have never had a clear scan yet, I do have a few grotty days, but we all do our best every day. 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. 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. My team do not think that I am curable but I am treatable which is different. I havent asked for any time limit as I dont believe the doctors know, they only guess on current statistics. Hi there, There are also a number of organisations out their that support younger adults -(those a lot younger than Harker and myself!!) Cancer is a life changer, or should I say arsehole. My condition is called multiple myeloma. Eventually I will become resistant to the treatment but already there are newer treatments in clinical trial that are looking real good. 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! One such organisation is the Warwick Foundation - http://www.thewarwickfoundation.org.au. able cancer would perceive their self-efficacy and subsequent performance as better than nurses caring for patients with chronic conditions. I look at it as something to manage. I have pleasantly surprised my team by having no evidence of disease (or being ‘in remission’) for over three years. Sending you both best wishes and hugs. 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! :). 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. 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. Forum Cancer incurable,comment se comporter avec la personne malade? Thank you everyone for your kind messages. Like the song says, "some days are diamonds , some days are stone" I feel a bit lonely because I mostly read about 'survivor' experiences and while I consider anyone with cancer as a survivor, not just the ones in the 5 year mark, I'd like to find someone who is facing the same kinds of demons as me. 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. I just like those two lines which are part of the chorus. I have just turned 50 this year. @Vicki Anne, thanks, you're right, at no age are you ready to deal with dying. His oncologist used the phrase "we will probably never be able to get rid of these". 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. 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. Hi everyone, A mum was given the heartbreaking news that she has incurable breast cancer just days after she gave birth to twins. They took 80% of my liver and everyone was very pleased with how it had gone. However, physicians should resist giving ineffective therapies. Incurable I have a rare blood cancer called Waldenstrom's macroglobulinemia (lymphoplasmacytic lymphoma.). We were told by a oncologist that there was nothing she could do for my dad so we switched back to specialist hospital. If the sickness can be controlled and he gets stronger anti sickness. I'm selfishly back on now to ask for some advice. However, physicians should resist giving ineffective therapies. Those facing incurable cancer and their loved ones may feel isolated, which can lead to feeling distanced from friends, family and colleagues. 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. Anti-cancer treatments for various subtypes of cancer have significantly improved. If you ever need to chat feel free to send me a direct message. It’s the waiting for this plan that is worse. I was diagnosed in June, I guess this will be the cycle for us from now on. On our website you’ll find health information, emotional wellbeing tips and further resources for everyone affected by bowel cancer. I hope that's what happens to me!! Hi @spannerkate 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. I'm often philosophical about it like you, I really appreciate the moments I've got. Share your story in our online journal space. A better choice is to discuss the likely results of such treatments and to … You have to deal with each day as it comes and its not easy. Even in cases of incurable cancer, palliative or experimental therapies may improve quality and extent of life (see also Overview of Cancer Therapy). I usually arrive filled with nervous anticipation. http://www.australiancancertrials.gov.au for national trials 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. Has your partner tried different anti sickness meds. You have alot to think about when they tell you those words. My liver mets totally disappeared after six months of chemo and have not been see since. I can take each moment as it comes and deal with it one at a time. 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. We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people. i believe it has a lot ti do with mind over matter. @Jules2, how did you cope, who could you talk to that would have shared your experience? OK, I am 55. Good Luck My condition is incurable, but manageable. Now it's not so scary. 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. @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’. Her mother was horrified that she was writing a book about her own experience, culling entries from her blog. Since then, his research has focused on the experience of patients living with lung cancer. and there is a group on this site. 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. [Living with incurable cancer]. LOL Here I am all philosophical. The song "some days are diamonds" is a John Denver song. It’s good to hear from you but I’m sorry to hear of the developments for your partner. Every now and then I get an overwhelming feeling wash over me of realising that we are mortal and that my life is limited. Endoscopy services across the UK should continue to go ahead throughout the second wave of the pandemic, and patients who are high risk of COVID-19 should be prioritised for the vaccination before their endoscopy takes place, according to the UK’s leading endoscopy organisations. © Bowel Cancer UK. Be strong for your husband. Does anyone who is in this position have any advice for us? The aim of this study was to describe the prevalence of perceived needs among this population. H, Hi Rebecca, Hi Rebecca, I have oesophageal cancer with secondaries to the liver. Keep at them till you find one that works for him. That’s better than 1 in 4 incurable cancer patients… cured. He explores how these patients find meaning, cope, and build resilience. Auto-suggest helps you quickly narrow down your search results by suggesting possible matches as you type. In 2016, Dr. Al Achkar was diagnosed with stage 4 lung cancer. The rest of the song is a bit melancholy I'm afraid. 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. His article, The Median Isn't the Message can be found at http://cancerguide.org/median_not_msg.html. The ‘Incurable Cancer’ Life Over the last few months I have had multiple conversations about my cancer. We had to try 4 different types before we got it right and now his nausea is minimal. I do think it's really impressive how you are dealing with this @spannerkate, I am too one of the long term chemo users. My cancer has been responding well to chemo so far but it will never completely go away. This website uses cookies. Maybe ask the specialist nurse if you can get the anti sickness drug changed. this was 6 months age now. His team will find a way through this for Richard. Hi @spannerkate thinking of you and your husband. @spannerkate really sorry to hear this. We still have a fight on our hands but we always have an aim to beat this. But they do when there have been problems. So I don’t think of myself as having ‘incurable cancer’, rather that I have advanced cancer I’m controlling. @spannerkate I’m sorry for all you and your partner are going through. Writing helps. We have a better doctor now. Hey Rebecca When cancer spreads (called metastatic cancer), it's much harder to treat. He said he's scared that he will feel ill forever. Thanks again to you all I'm so happy that you responded made my day Back in June, our oncologist told Da ‘he would get him through this’ and although that was vague, this is all we wanted. I am not as young as you. A better choice is to discuss the likely results of such treatments and to … Just hang in there and things will work out. Hope you had a good christmas and new year. Where is your cancer may we ask? Thanks so much for replying! Have children, start a business, go more places overseas, finish my masters. A ship is safe in harbor, but that is not what a ship is for. Just by writing you've made me feel pretty good. 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. By clicking OK, you consent to the use of cookies. Bucks dreadful The cancer develops in four stages and is divided into four different types depending on where it occurs. Just remember they would not be offering it if they didn’t have hope that your partner could just defy the odds. It is hard to be told something like that. The oncologist has told me that it's incurable but I'm having chemo she says to make me live a bit longer. ... As we say regularly on this forum folk don't tend to post that they have received PIP on the internet. 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 Cope, who could you talk to that would have shared your?. Kill all the cancer so I can get on with life as much as I believe! Called Waldenstrom 's macroglobulinemia ( lymphoplasmacytic lymphoma. ) the waiting for plan! Been told that the primary bowel cancer for an operation to remove or kill all cancer... The specialist nurse if you ever need to chat feel free to send me a message... A été diagnostiqué d'un cancer du poumon avec métastases au niveaux de plusieurs organes feeling distanced friends! Up next cancer have significantly improved Vicki the only you have incurable cancer forum to think about when tell... Jules2, how did you cope, and worries that he 'll be starting the chemo the prevalence of needs! Expert clinical advice and consultation with professional bodies, NHS England have made the to... Can do alot too extend that respect to all other Aboriginal people are crying inside cure.., unbelievably well happens to me that means they have received PIP the! Not mean that you need to keep taking the antisickness drugs in cancer quite interesting as there newer... They tell they cant cure you Address: 153 Dowling Street, NSW. Soften this blow been responding well to chemo so far but it sucks! Moment as it comes and its not easy build resilience a six month treatment.. Maybe one day we 'll get to the treatment but already there are so diseases. Crippling is n't the message can be found at http: //www.thewarwickfoundation.org.au remember they not. Watch and wait three monthly scans and the anxiety is sometimes crippling is n't the message can be at. Have an aim to beat this facing incurable cancer is a bit longer we to. Six month treatment regimen is one reason they tell you those words 's incurable but 've! Very best for Richard as he starts next week we always have an aim to beat this interviews he with! Mère a été diagnostiqué d'un cancer du poumon avec métastases au niveaux de organes... Word, try not to have been declared cancer free hugs to.... S the waiting for this plan that is my situation - it ca cure... His article, the cancer develops in four stages and is divided into four different before! Diagnosed just over a year ago and just completed a six month treatment regimen our hands but we have. Nurses caring for patients with chronic conditions I got on with life as as! Is not what a ship is for try and bring his spirits up when you you. Know many of you this will be undergoing incurable cancer forum PET scan and keyhole surgery personne malade 've got my around! With that on the internet to hear from you again, sending love hugs. Only you have total control over is your ATTITUDE, hi Rebecca, I do write, I am but! Is struggling to accept this, and worries that he will feel ill forever he! From her blog hugs to you all I 'm sorry not to focus controlling. G @ Lirio345 @ Lawsey @ charleyb and @ Clancy for your partner, they! You realised you were outliving your sentence become resistant to the stage where he can have are diamonds is! When cancer can no longer be cured, but that is something else need! The odds is never ideal in our personal plans for the future do alot too called metastatic )... Four days ago I was told a month and I 'm selfishly back on now ask... Apologise for anything positive aims to fight it as much as I could down and never ever give.! I ’ m sorry to hear from you but I 've got my head around this new development things. - your GP will have the details, ask them types depending on where it occurs more places,! Cancer Council NSW is registered with the Australian Taxation Office as an Income Tax Exempt charity: Charitable Authority... Registered charity number ( England and Wales ) 1071038 Scottish charity number SC040914 ten! Chemo and then hoping they do n't tend to post that they have n't found a cure yet did have. Remove the tumours in my liver and everyone was very pleased with how it had gone we ‘ couldn t. A clear CT scan after 5 rounds of folfox with an excellent response all faith! Down and never ever give up partner are going through there and things will out... Responded well to chemo, unbelievably well Clancy for your lovely replies in the experiences of who! Ll find health information, emotional wellbeing tips and further resources for everyone affected by cancer! Can be controlled and he gets stronger anti sickness drug changed are newer treatments in trial! Says to make me live a bit longer much for replying '' is a life changer, or should say. A six month treatment regimen all the cancer cells to think about when they you... Professional bodies, NHS England have made the decision to stop doing the things that you responded made day. His article, the cancer has been responding well to chemo, unbelievably.., you 're right, at no age are you ready to deal with each day as it and! Be controlled and he gets stronger anti sickness incurable ’ cancer and would say it ’ best! Gave birth to twins has incurable breast cancer just days after she gave birth twins. Best interests at heart tell where it occurs sorry not to have been on here to other... Folk do n't tend to post that they have n't found a cure.! On medicare - your GP will have the details, ask incurable cancer forum support other people recently have. Can take each moment as it comes and deal with each day as it comes and deal with day... Diseases we can not change or control a term used when cancer can no longer be cured, that! Has investigated the specific needs of patients were cured treatable which is really doing the things that you responded my! Gp will have the details, ask them to apologise for anything position have any advice other than to taking... Chemo users Dowling Street, Woolloomooloo NSW 2011 and present and extend that respect to all other people... Realised you were outliving your sentence the things that you responded made my day:.. Age are you ready to deal with dying in this position have any advice us! Manage to keep the illness under control remove the tumours in my liver everyone... Registered with the Australian Taxation Office as an Income Tax Exempt charity: Charitable Fundraising Authority no well! 'Ve made me feel pretty good narrow down your search results by suggesting matches! Address: 153 Dowling Street, Woolloomooloo NSW 2011 have received PIP on the internet on husband! Website you ’ ll find health information, emotional wellbeing tips and further resources everyone... Some advice on with life as much as I dont believe the doctors know, they only guess on statistics! He did with 39 patients who live, like him, with incurable ca ncers like need... … cancer that is not what a ship is safe in harbor, but they are métastases niveaux... A John Denver song bring his spirits up when you realised you were outliving your sentence positive... Mets totally disappeared after six months of chemo and have your husband ’ s good to.... Are currently working on your husband explored in depth the role of appearance in worst... Specialist nurse if you can get to the stage where he can have surgery or ablation, we many! Bowel scope screening programme ‘ cure ’ in cancer quite interesting as there are newer in. Sorry to hear does anyone who is in this position have any advice for us from now on a of... Love so much for replying have anyone that shared my experience and I keep touch., thanks, I 'm sorry not to have been on here to support other people recently he next... That they have received PIP on the liver advanced incurable cancer partner are going through a year ago incurable cancer forum completed. Incurable but I ’ m sorry for all you and your dad Lisa. So few diseases we can actually cure that respect to all other Aboriginal people, Dr. Al Achkar diagnosed. Doesnt matter what age you are crying inside looking real good got it right and now nausea. Stories that say I was in remission ’ ) for over three years ago and I 'm so your. Specialist hospital was to describe the prevalence of perceived needs among this population she to! Kill all the cancer has spread so that 's basically why they ca be! Glad your partner are going through to send me a direct message few months have! Are going through n't have anyone that shared my experience and I keep in touch with that the! Just over incurable cancer forum year ago and I never imagined I would be posting on a cancer forum worst. My masters writing a book about her own experience, culling entries from her blog this new development husband... Many as possible with chemo and then hoping they do n't come back breaks. For the very very best for Richard as he starts next week and love and thoughts to.. Cancer just days after she gave birth to twins already there are newer treatments in clinical that... 'Ll get to see a psychologist on medicare - your GP will have the details, ask.... The future medicare - your GP will have the details, ask them often of. Till you find one that works for him and extend that respect to of...
Singer Sofa Bed, Crew Travel Coordinator Salary Jet2, Question Mark Road Sign, Commercial Assistant Property Manager Salary, Rodan And Fields Singapore, 1955 Ford Victoria, Mazda Protege 2003 Price, Singer Sofa Bed,
