Even in cases of incurable cancer, palliative or experimental therapies may improve quality and extent of life (see also Overview of Cancer Therapy). Hey Rebecca His article, The Median Isn't the Message can be found at http://cancerguide.org/median_not_msg.html. We currently don't know the exact spread of the cancer and will be undergoing a PET scan and keyhole surgery. 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 was one year older than you when I was first diagnosed with cancer. There is something about social gatherings that always scares the crap out of me. How did you stop the morbid thoughts popping into your head (if you had any) if you thought it was only a month? Thanks @Bear G @Lirio345 @Lawsey @charleyb and @Clancy for your lovely replies. 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. Thanks so much for replying! Our current Dr said we ‘couldn’t have asked for a better scan’. Cheers Hi @spannerkate They cant tell where it may pop up next. In these unprecedented times, we know many of you are understandably worried and concerned. The doctors will do their best and you can do alot too. The only you have total control over is your ATTITUDE, Hi everyone, He said he's scared that he will feel ill forever. Eventually I will become resistant to the treatment but already there are newer treatments in clinical trial that are looking real good. In that moment, I became a member of a community. Incurable Cancer is a term used when cancer can no longer be cured. Sending you both best wishes and hugs. Vicki Good Luck But it still sucks, and there's so many emotional things on the journey. 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! 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. [Article in Dutch] Buiting HM(1), Linn SC, Smorenburg CH, de Kanter W. Author information: (1)Antoni van Leeuwenhoek, Amsterdam. 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). He will get through chemo. My condition is incurable, but manageable. However, physicians should resist giving ineffective therapies. The aim of this study was to describe the prevalence of perceived needs among this population. 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. You can find out more about clinical trials, where they are available and whether or not you are eligible at two websites: 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. Now it's not so scary. 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 it doesnt matter what age you are, you are never ready to deal with dying. And has responded well to chemo, unbelievably well. This website uses cookies. Maybe ask the specialist nurse if you can get the anti sickness drug changed. The ‘Incurable Cancer’ Life Over the last few months I have had multiple conversations about my cancer. But it must be tough for you to try and bring his spirits up when you are crying inside. 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. I was told that the primary bowel cancer was pretty stable but it was a good idea to get on with surgery. At the end of Feb I went in for an operation to remove the tumours in my Liver. and there is a group on this site. 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. 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. Thank you everyone for your kind messages. You have to deal with each day as it comes and its not easy. I look at it as something to manage. Richard is struggling to accept this, and worries that he'll feel ill forever. That is my situation - it can't be cured, but they manage to keep it under control. Has the oncologist talked about potential next steps? have hope and never give up! I can take each moment as it comes and deal with it one at a time. But they do when there have been problems. Please don’t apologise, on this journey we do have to look after ourselves when we need to, it’s important. :), Hi Rebecca @Jules2, how did you cope, who could you talk to that would have shared your experience? But we all have faith in our teams, and hope for the future. Past few weeks have been mental for me and I'm now in the worst place possible. I hope the cancer I've got is managable too. 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. I have pleasantly surprised my team by having no evidence of disease (or being ‘in remission’) for over three years. 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. This is done using long term / maintenance chemo which is really doing the job for me. I have just turned 50 this year. 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. God bless you and your dad and Lisa @ Aisling00. 18521. You have alot to think about when they tell you those words. He explores how these patients find meaning, cope, and build resilience. His oncologist used the phrase "we will probably never be able to get rid of these". @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’. This is done using long term / maintenance chemo which is really doing the job for me. It’s the waiting for this plan that is worse. I havent asked for any time limit as I dont believe the doctors know, they only guess on current statistics. Increasingly, however, they are finding ways to control cancers, if not cure them. I didn't have anyone that shared my experience and I got on with life as much as I could. this was 6 months age now. Writing helps. @spannerkate I’m sorry for all you and your partner are going through. Those facing incurable cancer and their loved ones may feel isolated, which can lead to feeling distanced from friends, family and colleagues. No research, however, has explored in depth the role of appearance in the experiences of individuals who have incurable cancer. Just by writing you've made me feel pretty good. Hello, my name is Mel and I never imagined I would be posting on a cancer forum. We still have a fight on our hands but we always have an aim to beat this. On our website you’ll find health information, emotional wellbeing tips and further resources for everyone affected by bowel 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. I have never had a clear scan yet, I do have a few grotty days, but we all do our best every day. Hi Rebecca, Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work. It is hard to be told something like that. In 2016, Dr. Al Achkar was diagnosed with stage 4 lung cancer. His writing is based on interviews he did with 39 patients who live, like him, with incurable ca ncers. I usually arrive filled with nervous anticipation. 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. Stay strong and sending love and hugs to you. Does anyone who is in this position have any advice for us? The song "some days are diamonds" is a John Denver song. I was diagnosed just over a year ago and just completed a six month treatment regimen. 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. 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 PIP application with incurable cancer. So I don’t think of myself as having ‘incurable cancer’, rather that I have advanced cancer I’m controlling. Getting rid of as many as possible with chemo and then hoping they don't come back during breaks from treatment. I am sorry to hear about your partner, but I do think this is at least partly to do with language. G'day Rebecca The way I cope with this is to focus on controlling the cancer so I can get on with enjoying my life. Next step is more of the same chemo he had at the start of the year (capox) since it worked so well last time. My condition is called multiple myeloma. Maybe one day we'll get to the stage where he can have surgery or ablation, we can only hope I guess! By clicking OK, you consent to the use of cookies. If the sickness can be controlled and he gets stronger anti sickness. 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. PIP application with incurable cancer - Page 4. I have an incurable cancer too. That is something else you need to keep an eye on - what clinical trials are. Has your partner tried different anti sickness meds. Where is your cancer may we ask? We were upset but we stuck to our positive aims to fight it. 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. 'Like the song says, "some days are diamonds , some days are stone"' I like that a lot, what song is it from? 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 was pretty scary for ten months, then I was in remission until recently. I'm often philosophical about it like you, I really appreciate the moments I've got. @maddie86, I'm so glad your partner is getting better! We have a better doctor now. 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. One such organisation is the Warwick Foundation - http://www.thewarwickfoundation.org.au. 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. 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. Hope you had a good christmas and new year. Keep fighting and never lie down and never ever give up. Hi everyone, Keeping both of you in my prayers. His team will find a way through this for Richard. Cancer Council NSW is registered with the Australian Taxation Office as an Income Tax Exempt Charity: Charitable Fundraising Authority No. The folfox has worked on the liver metastases that were in both lobes. 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. The way I cope with this is to focus on controlling the cancer so I can get on with enjoying my life. We are on watch and wait three monthly scans and the anxiety is sometimes crippling isn't it. 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’. Registered charity number (England and Wales) 1071038 Scottish charity number SC040914. Your team are currently working on your husband’s plan and have your husband’s best interests at heart. We always knew this was a possibility but it's still difficult to hear. 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. Astre jeu, 04/06/2015 - 15:23 (5) commentaire(s) Bonjour. Good luck to you and your husband. My liver mets totally disappeared after six months of chemo and have not been see since. I was diagnosed in June, 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. Anti-cancer treatments for various subtypes of cancer have significantly improved. What's yours? Cancer is a life changer, or should I say arsehole. I guess this will be the cycle for us from now on. I think he'll be starting the chemo next week. You can get to see a psychologist on medicare - your GP will have the details, ask them. LOL Here I am all philosophical. 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." Our father was on the couch and weak, but he was gaining weight and getting through the chemo. 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