non-curative cancer in peritoneum lymphnodes

Hi Valerie, welcome to the group that no one wants to join but I so wish I'd met you elsewhere. The people in this group are really lovely people who are wonderfully supportive, sympathetic and empathetic. 

I'm sorry to read about your situation and I'm relieved that you're not having pain or sickness. Reading about your psychotherapy dismays me so much, I can't understand why some people are so cruel, hope you can someday be able to put your pain and trauma way at the back of your mind. 

Your incurable diagnosis lends itself to the possibility of being offered a trial drug or drugs that could help you on your journey, always a chance of a cure because medicine moves at a pace that gives us hope.

I have an incurable bone marrow cancer diagnosis which I was faced with in March 2015 and for approximately 10 years I've had 2 or 3 treatments every week, no breaks. I'm surprising myself, family and friends by still being around after so long. 

How do you keep active Valerie? In my case I enjoy nature and especially my garden which takes up a lot of time. I also have spinal stenosis that was diagnosed just 3 months after my cancer diagnosis which by the way is myelodysplasia or MDS for short. The spinal stenosis causes a lot of back pain and I was in a wheelchair for approximately 6 years so gardening is done in periods with a few breaks. MDS Is a blood cancer and my main concern is low haemoglobin, neutrophils and platelets so let's just say it's a bit problematic, well quite problematic!

Well, nice to meet you and I hope you'll be here chatting with me and everyone here for a long time. 

By the way you can congratulate yourself on your IT skills because you've done everything perfectly. 

Tvman x

Hi Valerie, I was originally diagnosed with stage 3c1 cervical cancer just over a year ago. Mine has also spread and is now incurable. You can read my full story by clicking on my name. Then happy to chat some more. 
Mary x 

Dear Valerie, sorry to hear that you are struggling with the diagnosis and the uncertain outcome. It does sound like you are not dealing with any immediate threat to your life. Can't you talk to your therapist about ways to deal with the situation more positively? A pet might help you get going again and, no worries, there are plenty of options for pet care if things did get worse. Try and get out and about, enjoy your hobbies and all the rest life has to offer.

Dear Tvman, thank you for taking the time to reply to my post. I am afraid you have been going through so many terrible times for at least the last 10 years, I have never heard of some of the conditions you describe and it sounds very painful and difficult - but admirable it seems to me how well you have kept going and all you do to stay positive.

It makes my own situation pale into insignificance by comparison. Although going through the treatments in 2023 - and the previous months of symptoms which led up to the diagnosis when I was told I had a year to live unless I went through the treatment - was a difficult time with the constant exhaustion, intermittent pain, nasty rashes, blood transfusions etc and sickness, I was still mostly more concerned daily with dealing with severely repressed trauma, disorientation and terrifying flashbacks and loss of memory and the total confusion of that as previous forgotten sexual violence seeped through my mind and body - such that it was mostly impossible for me - or the consultants - to be able to differentiate between which was the cancer and which caused by trauma.

Because I have been dealing with this for over 40 years as it has been becoming conscious, really I didn't feel much when told I had a year to live from the cervical cancer if I didn't have the treatment. I had already not wanted to live for many years on a daily basis in deep depression. I was already saturated with shock from all I continued to go through and it felt like I didn't have room for any more shock so didn't relate to all the media constantly putting out about the terrible shock of being told you have cancer. It was just one more thing. The only difference was that the moment I was told I had a year to live without the treatment I suddenly said "I want to live" - And from then on things changed from not wanting to live to realising I did. I was then so wonderfully cared for by all the hospital staff who organised all the daily hospital transport and were there at the end of the phone for every emergency - of which there were several over the few months of treatments - that I felt more cared for and kindness than I could remember knowing apart from when I was in hospitalised breakdowns in the 80's and 90's under the care of a brilliant and kind doctor who became my therapist for many years. In fact he saved my life. So my cancer treatment period was also a time of much inner healing which while also saving my life was scary in other ways as cancer was a completely unknown quantity to me - I was astonished when told it had completely cleared after about five or six months. I was told to expect the side effects to get worse before they got better and in fact the time since told it had cleared - at the outset of 2024 - until recently - has been much more painful mentally and emotionally plus unremitting exhaustion and inability to concentrate to read - than during the actual treatments.

I mainly posted on this forum out of the frustration of not understanding and being unable to find out anything much about the now incurable cancer I have been told I have in the lymph nodes of the peritoneum. It is incurable due to their being unable to perform surgery because of the expensive scarring left by the radiotherapy plus having had the limit of radiotherapy it is safe to have. It is the unknowing and being in limbo I have been having such a hard time over as I was just at the outset of being able to return to creative life after not having been able to live that life all along due to trauma of past extreme and extensive abuse which was and remains dissociated. Most people do not understand this so I have accepted long ago that was my path and used my talent to document and write and study dreams and the unconscious in the hope and aspiration of being able to bring a community creative project out of it eventually. Frankly I forget I have cancer most of the time - but am slowly realising I might have been in denial - forgetting that it could grow and treatment be needed from month to month and how that might again cause brain fog and disabling symptoms regarding getting involved in new community work.

Reading what both you and others have written in the incurable forum makes me feel I am very lucky and have not and do not have it any way near as bad as most people's descriptions of what they are and have been going through. It is just that I| have been so focused for decades on wanting to set up a community project for survivors of abuse to be able to express their stories, be witnessed by each other and make art work to exhibit publicly and tell their stories it has given me inspiration and purpose and the fear that I might never be able to achieve it makes me feel distraught, wrongly or rightly - as I feel passionately that this is my vocation and is what is needed in the community. 

It is all very complex and I am just grateful to have been able to put something in writing here and to have your replies  but I do believe this may not be the space for me to post since I am nowhere near as in the dire cancer experiences I have read by others. Due to family denial and cover-up and hysteria over their own abuse being known about I have had to leave my much-loved family - siblings and their children - whom they do not want known about abuse in the family by family members - which means they do not know I have cancer and this dilemma how and whether and/or when to tell them hangs over me causing anxiety as I would like to see them again before I die - not knowing how soon that might be - as of course none of us do - but incurable cancer rather brings that moment more into acute actuality - and it could be any time from maybe a few years to a decade or more. I am also financially broke due to not having been able to work and earn for many years due to my mental state in recovery from the shattering effects of abuse.

Sorry this is a lot to write - but the frustration of having conditions and treatment - ie psychotherapy - which in my experience the majority of the public have no understanding about - makes it more difficult to find the words to communicate with.

Thanks for reading and thanks again for sharing your experience - what and how you have dealt with over so many years sounds so courageous and strong. I wish you well.

Valerie (Old salt)

Dear Gilpat

Thank you for your reply. You are right I do not think there is an immediate threat to my life. My work with my psychotherapist and the reasons for it are deep and complex and I cannot communicate about that as your question as to can't I ask him how I could deal with the situation more positively shows. I am also acutely aware of the benefits of having a pet and again reasons for not acting on that are complex but thank you for your comments about that and about getting out and enjoying hobbies. 

I have written at more length about my situation to Tvman, I am unsure as to whether all that is written is shown on the public forum but if you are interested and have the time to read it I trust it may answer some of your comments.

Dear mvic

Thank you for your reply and for sharing your cancer experience which I have read. I am pretty dumbfounded to be honest about the journey you have described, I am so sorry to hear about all you have gone through and for it to have been found you have lesions on your brain and liver and bone cancer. (I hope I have got that right as your post is not in front of me to check and I have terrible memory and concentration problems.) I will not go into the mental health side of things here ie over memory, concentration and dissociation stemming from severely repressed abuse - which is what dominates my life to date, more than thinking about the cancer - as I have written a lot in response to comments by Tvman and don't want to repeat it unnecessarily. I do not know how the forum works so not sure if you will be able to see what I have written to Tvman. I would hope that whatever is written is open to be read by whoever else is on the "incurable" forum. If it isn't, I would appreciate having it explained to me how that works so that I do not keep repeating myself.

What you have gone through sound terrifying to me. You don't mention your emotional reaction to it all but I cannot imagine you can be feeling great, while coming across as so calmly getting through it all. 

As I have written to Tvman I feel very lucky in comparison to what I have read in so many of the posts on the incurable forum, particularly yours as it sounds such a frightening and painful journey you have been and are on.  I can relate to some of it in terms of early symptoms - although it does sound to me though I am ignorant - as if you were very brushed off by your initial medical practitioners - I wonder if things could have been better for you if they did the scans earlier. My own symptoms began in about December 2022 with a deluge of blood  which led to an internal examination followed by a hysteroscopy in mid January 2023. I came round from the anaesthetic to be told they had not been able to carry out the hysteroscopy because my cervix was so badly damaged, it was impossible to push a camera up through there to the uterus. At this I immediately remembered the pages of drawings and writing I had made in January 1991 during being deeply regressed in my third year of psychotherapy, of being bent over on my knees at age two with my hands tied behind my back while my father pushed sharp metal objects up inside me causing me to jerk and jump with pain. (It is only this year after continuous psychotherapy for 39 years that I realised his actions were torture-based mind-control - in order to cause me to split my mind in two and render me a dissociated slave to his will - completely under his control which led to his abusing me as both a child and teenager and which is completely repressed. I have made a study with my art and writing of this as it became conscious over the years which is all part of what has saved my life). I subsequently gave copies of these pages to the oncology consultant when I was told I had 3C cervical cancer - that there was such extensive scarring to my vaginal canal and I think - but am not sure/can't remember exactly - to the walls of the uterus - that it was too dangerous to carry out surgery. Since then as the cancer symptoms and treatments have progressed, the conversations with the oncologist have always referred to the difficulty of being unable to discern the extent to which my daily distress from physical and mental conditions is being caused by cancer or repressed trauma. The oncology team can of course only rely on the results of the CT scans - in other words the physical manifestations of the disease.

I have written more details to Tvman which I hope you can access if you wish to so that I do not repeat myself. As said, I posted on this forum really to ask if anyone could enlighten me as to what to expect over cancer of the lymph nodes on the peritoneum (I can never remember if I have spelt it right - I don't even understand what or where it exactly is.) I have tried to ask my specialist nurse  about it and she has explained somethings but I am really none the wiser. I do not know if it can spread or to where - at present it hasn't moved all year since I was told it was there - they have no idea about timescale for either treatment or years before death - as said they have said it could be 2-3 years or a decade.... 

I mostly forget consciously about the cancer - though very conscious I cannot make career or other longer-term decisions or plans - have started to think I may be in denial because a part of me cannot believe I could be going to die sooner than I should and not be able to carry out my life's task of bringing all this knowledge about trauma and abuse and it being the true basis of long-term mental health issues to public awareness. I  I have ever-present anxiety due to repeated flashbacks of sexual violence by my father and having to keep silence due to a family who is in denial and who has since toddlerhood screamed at me for trying to speak about anything to do with it. Along with the poverty caused by being unable to work and earn for so long, caused by all this. This also prevents me being able to take the plunge to start a new course of study like a PhD which I would if I could afford it - in the knowledge that illness ie the cancer might end it prematurely.

Yet as I get better and better from this historical abuse and recover from the cancer treatments of 2023, I feel very lucky in comparison to so many sufferers of cancer. I feel the uprising of energy, strength and hope of returning to the community and taking up creative work again, while I am realising as I get older that my time is ever more limited I may not be able to carry out anything much - also that my current situation is so much luckier than so many people on this forum - as I do not currently have any symptoms, pain or sickness although still constantly sleeping. My main problem over the cancer is really being about being in limbo and unknowing - plus that now it is incurable, the abuse by my father which has decimated my life is now - providing something else like a heart attack or something doesn't - going to kill me - and that is something I wish to make public and which I will have to find the way finally not just to tell my estranged family I have cancer but who and what caused it.

Undoubtedly that will be disputed by  some readers but it is good enough for me to understand this and for it to finally galvanise me into what actions I need to take before it is too late.

I may re-read your earlier post as my memory is so poor I may have read details on there I have not properly addressed in which case I apologise.

I can only say I feel inadequate to respond in any way that feels of solace in the face of the issues you are personally having to deal with and can only wish you all strength and as much well- being as possible.

Valerie (Old Salt)

Hello again mvic, I have now re-read your information and see I was mistaken in my earlier reply...I am wondering myself if my brain is worsening with more than residue of trauma and long-term memory-loss from ECT which I had in 1980 as I have a lot of confusion currently. So apologies I didn't retain your information that as well as the devastating news you have brain lesions, it has spread to your kidneys and hip bone.  I must say I cannot imagine the shock this must have been for you to be told. And what you have gone through all seems to have happened so quickly. I am so glad however to hear that following all your palliative treatments it is currently stable and I hope the treatments may have helped emotionally as well as physically.  May that state continue and you are able to enjoy life meanwhile. x

Hi Mary (mcvic) I wrote another reply to you but think it may have sent to myself - sorry I don't know. I have copied it below - if that works - but again don't know if it will send to you or back to me.. I am afraid this all drives me totally mad - IT/tech.

Oh dear it won't copy. So I will repeat I wrote I am sorry I was mistaken  in my earlier reply to you that as well as the devastating news your cancer had spread to your brain but also to your kidney and hip bone. I am so sorry what a shock to be told that. I am glad to hear though that following your palliative treatment it has remained stable. I hope this has helped your well-being and long may it continue.

I hope this reaches you or I will have to give up trying to post. x

Hi Valerie

I am so sorry to read about your recent diagnosis and the abuse you have suffered from your father in the past.

I think you are doing amazingly to survive it and trying to help others with similar circumstances. 

It is very difficult to live with an incurable diagnosis especially at the beginning, so your reaction is entirely normal. Be kind to yourself and allow yourself time to accept the situation. 

I found overtime, I came to accept my situation and be at peace with it. I was the happiest since I was a teenager. Sometimes when we don’t have the future, we can then focus on the present instead and now is really anyone can have.  I am grateful to wake up everyday and not in any real discomfort right now. Even when is grey and damp, I am still happy to have a chance to experience it. Try to focus on now, doing things you truly enjoy and value. Try acknowledging things we just have no control ie biology and move on from it. 

Take care 

Stella x

Hi Stella

Thank you so much for your very kind and understanding reply. It has been really helpful for me to read your words letting me know my reaction to the incurable cancer diagnosis is "normal"!. I have felt such a wimp the last few days from posting about my distress both over the cancer but particularly writing about the abuse somehow my anxiety levels went through the roof, it is so difficult to break the silence of a lifetime in any way public. I am amazed at how even writing on a relatively - or totally- anonymous forum can stir one's feelings up to screeching levels of torment. It has been also a revelation - and a leveller - to me to read about some of the awful suffering of other "incurable" cancer sufferers which made me feel my own current situation pales into insignificance against many of them.

One of the most painful reactions to my speaking out in any way about my abuse experience has been being called "selfish" especially by one sister - a most incredibly damaging thing to be called in the face of my speaking out at all, let alone when other younger family members could have been at risk of abuse by my father - even though I could barely believe myself that he would do that - yet throughout the following decades I have suffered unremitting and debilitating flashbacks of his abuse throughout my childhood and teenage years, showing the extent of how terror and trauma silences not just voices but buries all memories  (until life and triggers and natural spiritual/psychological growth wakes them up) such that subsequent traumatic symptoms such as acute anxiety and depression and other illness/symptoms are often wrongly diagnosed by psychiatry, as mainstream psychiatry notoriously ignores "trauma" in a person's history, instead labelling symptoms and distress in terms of theories such as "Chemical imbalance in the brain" stemming from hereditary or unknown causes and including being incurable and necessary to be treated with drugs for the rest of a person's life. As I and countless others have discovered after decades of fighting to heal and understand ourselves, this is a lie - and a life-threatening one.

I very much appreciate your words of encouragement to be kind to myself and that it takes time to adjust to an incurable cancer diagnosis. Your words have helped take the sting out of my feeling selfish for expressing my distress and confusion and even having a voice at all. Also I really get what you are saying about feeling happier than you did in your teenage years despite the "incurable" diagnosis. I have been surprised myself at feeling increasingly happy in between the flare-ups of horror and anxiety - and the coming-to-terms with everything as part of acceptance of the present being all we have - and like you these days valuing the smallest things, even a grey day and waking up grateful not to be in pain or feeling sick - and just having the chance to enjoy what is in the here and now - the wind and rain and everything - and making the most of it.

Thank you.

Wishing you all the best,

Valerie (Old Salt)