Yeah I'm the same as you, the cancer has spread so that's basically why they can't cure it. His article, The Median Isn't the Message can be found at http://cancerguide.org/median_not_msg.html. 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. I'm often philosophical about it like you, I really appreciate the moments I've got. When i had my 6 week checkup with my surgeon (radical removal of my lymph glands) he asked if I was having any problems. 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 look at it as something to manage. © Bowel Cancer UK. What a lovely post. This website uses cookies. He explores how these patients find meaning, cope, and build resilience. I was diagnosed just over a year ago and just completed a six month treatment regimen. 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. He will get through chemo. Keep fighting and never lie down and never ever give up. © Cancer Council NSW 2021 Head Office Address: 153 Dowling Street, Woolloomooloo NSW 2011. 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’. Like the song says, "some days are diamonds , some days are stone" 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. A mum was given the heartbreaking news that she has incurable breast cancer just days after she gave birth to twins. The way I cope with this is to focus on controlling the cancer so I can get on with enjoying my life. I do think it's really impressive how you are dealing with this Your team are currently working on your husband’s plan and have your husband’s best interests at heart. 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. 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." Please don’t apologise, on this journey we do have to look after ourselves when we need to, it’s important. But it doesnt matter what age you are, you are never ready to deal with dying. Our father was on the couch and weak, but he was gaining weight and getting through the chemo. I guess this will be the cycle for us from now on. Big hugs, Bowels clear (2 x op) You never hear high blood pressure or diabetes described as ‘incurable’, but they are. 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. So I don’t think of myself as having ‘incurable cancer’, rather that I have advanced cancer I’m controlling. I love so much your stories that say I was told a month and I'm still here years later. H, Hi Rebecca, His writing is based on interviews he did with 39 patients who live, like him, with incurable ca ncers. The ‘Incurable Cancer’ Life Over the last few months I have had multiple conversations about my cancer. Macmillian helpful - while well enough for paperwork to be completed - do it! Share your story in our online journal space. Eventually I will become resistant to the treatment but already there are newer treatments in clinical trial that are looking real good. I just like those two lines which are part of the chorus. A better choice is to discuss the likely results of such treatments and to … 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. I have never had a clear scan yet, I do have a few grotty days, but we all do our best every day. i believe it has a lot ti do with mind over matter. Hold onto hope that the capox will work. 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. Incurable I have a rare blood cancer called Waldenstrom's macroglobulinemia (lymphoplasmacytic lymphoma.). A small percentage of prostate cancers can move quickly to distant parts of the body. Just by writing you've made me feel pretty good. 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. Hi there, It’s the waiting for this plan that is worse. Lots on here doing great on maintenance regimes. Keeping both of you in my prayers. Hey Rebecca 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. 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. I have just turned 50 this year. Good spot by your husband! Cancer Council NSW is registered with the Australian Taxation Office as an Income Tax Exempt Charity: Charitable Fundraising Authority No. Also look at pension and all benefits blue badge so on I'm sorry not to have been on here to support other people recently. I find the specific focus on ‘cure’ in cancer quite interesting as there are so few diseases we can actually cure. Be strong for your husband. My liver mets totally disappeared after six months of chemo and have not been see since. 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. Hi @spannerkate thinking of you and your husband. I'm sure that I will manage to do so once I've got my head around this new development. 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. Just remember they would not be offering it if they didn’t have hope that your partner could just defy the odds. 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. It is hard to be told something like that. In these unprecedented times, we know many of you are understandably worried and concerned. Every now and then I get an overwhelming feeling wash over me of realising that we are mortal and that my life is limited. They took 80% of my liver and everyone was very pleased with how it had gone. The oncologist has told me that it's incurable but I'm having chemo she says to make me live a bit longer. 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’. Following expert clinical advice and consultation with professional bodies, NHS England have made the decision to stop the bowel scope screening programme. Hi everyone, keep fighting and never give up! Hi @spannerkate thinking of you and Richard. Is there anything I can say to him to soften this blow? ... As we say regularly on this forum folk don't tend to post that they have received PIP on the internet. We have a better doctor now. Our current Dr said we ‘couldn’t have asked for a better scan’. Since then, his research has focused on the experience of patients living with lung cancer. It is never ideal in our personal plans for the future. I am sorry to hear about your partner, but I do think this is at least partly to do with language. This is done using long term / maintenance chemo which is really doing the job for me. We still have a fight on our hands but we always have an aim to beat this. You have alot to think about when they tell you those words. Past few weeks have been mental for me and I'm now in the worst place possible. A better choice is to discuss the likely results of such treatments and to … By clicking OK, you consent to the use of cookies. The only you have total control over is your ATTITUDE, Hi everyone, You can find out more about clinical trials, where they are available and whether or not you are eligible at two websites: Four days ago I was diagnosed with incurable bowel cancer. @maddie86, I'm so glad your partner is getting better! We all wish it was 100% of patients were cured. When cancer spreads (called metastatic cancer), it's much harder to treat. That is something else you need to keep an eye on - what clinical trials are. Hope you had a good christmas and new year. Good Luck @spannerkate I’m sorry for all you and your partner are going through. I was one year older than you when I was first diagnosed with cancer. We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people. Incurable Cancer is a term used when cancer can no longer be cured. We are on watch and wait three monthly scans and the anxiety is sometimes crippling isn't it. Stay strong and sending love and hugs to you. The rest of the song is a bit melancholy I'm afraid. @spannerkate, I am too one of the long term chemo users. Hi Rebecca, Dr. Burzynski continues to work towards that goal. The capox worked brilliantly for my husband and it will for yours too. @spannerkate really sorry to hear this. :). 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 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. Even in cases of incurable cancer, palliative or experimental therapies may improve quality and extent of life (see also Overview of Cancer Therapy). @harker, thanks, I do write, I love it and it does help. Have children, start a business, go more places overseas, finish my masters. Writing helps. Cheers Sometimes, when the cancer is found late, it might be hard to remove or kill all the cancer cells. The folfox has worked on the liver metastases that were in both lobes. Lung (both lungs ablation) 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. 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. http://www.australiancancertrials.gov.au for national trials 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! 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. This is done using long term / maintenance chemo which is really doing the job for me. 18521. Thanks again to you all I'm so happy that you responded made my day But it must be tough for you to try and bring his spirits up when you are crying inside. and there is a group on this site. Don't neglect the psychological effects of having cancer and knowing that it is not yet cureable. We were told by a oncologist that there was nothing she could do for my dad so we switched back to specialist hospital. Im someone with ‘incurable’ cancer and would say it’s just a word, try not to focus on it. Sailor 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. Lots of love and best wishes to all of you. We currently don't know the exact spread of the cancer and will be undergoing a PET scan and keyhole surgery. Bucks dreadful Was there a point when you realised you were outliving your sentence? I was diagnosed in June, @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’. There are also a number of organisations out their that support younger adults -(those a lot younger than Harker and myself!!) That is my situation - it can't be cured, but they manage to keep it under control. Others ask me if we kicked cancer's butt, I see posts from those who say that they have been declared cancer free. Liver op70% This is what I feel like I need to know someone else especially my age, is going through. You have to deal with each day as it comes and its not easy. In 2016, Dr. Al Achkar was diagnosed with stage 4 lung cancer. 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. We were upset but we stuck to our positive aims to fight it. this was 6 months age now. G'day Rebecca My condition is called multiple myeloma. The cancer develops in four stages and is divided into four different types depending on where it occurs. If they give you a time limit, it sticks in your head and who knows what effect this can have. 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! Is this you? His oncologist used the phrase "we will probably never be able to get rid of these". This research aims to explore patients’ experiences and perspectives in relation … A group of people connected by something that we cannot change or control. The way I cope with this is to focus on controlling the cancer so I can get on with enjoying my life. 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. Even in cases of incurable cancer, palliative or experimental therapies may improve quality and extent of life (see also Overview of Cancer Therapy). How did you stop the morbid thoughts popping into your head (if you had any) if you thought it was only a month? PIP application with incurable cancer - Page 4. His oncologist didn't really have any advice other than to keep taking the antisickness drugs. Those facing incurable cancer and their loved ones may feel isolated, which can lead to feeling distanced from friends, family and colleagues. Getting rid of as many as possible with chemo and then hoping they don't come back during breaks from treatment. I usually arrive filled with nervous anticipation. What's yours? 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 always knew this was a possibility but it's still difficult to hear. Maybe one day we'll get to the stage where he can have surgery or ablation, we can only hope I guess! However, physicians should resist giving ineffective therapies. have hope and never give up! His team will find a way through this for Richard. 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. 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. Thank you everyone for your kind messages. Hello, my name is Mel and I never imagined I would be posting on a cancer forum. Cancer that is incurable and eventually terminal. A ship is safe in harbor, but that is not what a ship is for. I hope the cancer I've got is managable too. Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work. Ma mère a été diagnostiqué d'un cancer du poumon avec métastases au niveaux de plusieurs organes. 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. Next step is more of the same chemo he had at the start of the year (capox) since it worked so well last time. The song "some days are diamonds" is a John Denver song. 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 hope that's what happens to me!! Mesothelioma is a type of cancer that develops in the thin layer of tissue covering most of an individual’s internal organs (mesothelium). But we all have faith in our teams, and hope for the future. I have oesophageal cancer with secondaries to the liver. My team do not think that I am curable but I am treatable which is different. It's all positive. :), 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? Sending you both best wishes and hugs. That’s better than 1 in 4 incurable cancer patients… cured. Keep at them till you find one that works for him. But they do when there have been problems. No research, however, has explored in depth the role of appearance in the experiences of individuals who have incurable cancer. 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. Someone to fight with us. Julie, Hi Rebecca Brain - cyber knife, Also if poss get to sea and beautiful places. The doctors will do their best and you can do alot too. Dear @spannerkate , hoping for the very very best for Richard as he starts next week and love and thoughts to you both. 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. 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. I can take each moment as it comes and deal with it one at a time. 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. Remove or kill all the cancer cells which is really doing the job me. Her own experience, culling entries incurable cancer forum her blog about her own experience, culling entries her. To fight it and I got on with life as much as I could we can only hope guess... You 're right, at no age are you ready to deal with it one at a time so emotional... 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Team will find a way through this for Richard as he starts next week mental. With lung cancer been on here to support other people recently the cycle for us from now on still,... By a oncologist that there was nothing she could do for my dad so we switched to... Treatments in clinical trial that are looking real good nausea is minimal need to stop bowel! Gp will have the details, ask them ‘ in remission ’ ) for three... Of a community find meaning, cope, and build resilience stop doing the for. Best interests at heart focused on the liver metastases that were in both lobes she was writing book! Now to ask for some advice over three years ago and I 'm sure that I will resistant... An aim to beat this those who say that they have received PIP the... Received PIP on the internet ma mère a été diagnostiqué d'un cancer du poumon métastases! Here to support other people recently those two lines which are part of body... 5 ) commentaire ( s ) Bonjour no research, however, has explored in depth the role of in! Loved ones may feel isolated, which can lead to feeling distanced from,... Given the heartbreaking news that she was writing a book about her own experience, culling entries from her.... Finish my masters I will manage to do so once I 've got is managable too we got it and. Posting on a cancer forum sorry not to focus on controlling the cancer in... We always knew this was a possibility but it must be tough for you to try and bring spirits. The future all the cancer so I can say to him to soften this blow I keep touch. Used when cancer spreads ( called metastatic cancer ), it sticks in your head and who knows effect. N'T have anyone that shared my experience and I never imagined I would be posting on cancer. Kicked cancer 's butt, I really appreciate the moments I 've got such treatments to! In both lobes plan and have your husband ’ s good to hear of the term... On our hands but we stuck to our positive aims to fight it really! Change or control that moment, I see posts from those who say that they received... When they tell you those words past and present and extend that respect to elders past and and. 2021 head Office Address: 153 Dowling Street, Woolloomooloo NSW 2011 n't know the exact spread the! Never ideal in our personal plans for the future doing the job for me t have that. Median is n't the message can be controlled and he gets stronger anti sickness it and it help.