28 and dying, struggling with anger.

[nobetterplace]

Hello,

I’m a mum of two little boys, I have a four year old and a one year old.

I’m 28 years old and I was diagnosed during my pregnancy with stage 3 ampullary cancer. I had surgery to remove the tumour but unfortunately the cancer had spread to my lymph nodes and to my liver and it is terminal.

I have wonderful people around me, who are trying to make everyday special for me and support my boys but I am just so angry. I can’t find any acceptance or calm, I am so angry that this is happening and that I am completely powerless and cannot stay for my boys. No one can say once I’m gone that I’m finally at peace, peace is at home with my boys and I don’t want to die. It’s not a situation you think about until you’re in it but I feel like you expect sadness, grief, perhaps eventually acceptance but I feel this blind rage and desperation to fix something I can’t fix.

I don’t want to burden the people around me, at the end of the day soon I will be gone and they will be the ones picking up the pieces. It will make it a lot harder for them to move on from if they know how angry I am and not that I “am in a better place” like people say.

I want to soak up my children for every second I can but I find every second with them gut wrenching. I have so many things I need to do, I want to write them letters, I want to film videos for important occasions, I need to wean my littlest off the boob so he doesn’t just suddenly have to go cold turkey because I’m no longer alive. I just don’t know how because when I go to do these things I just feel this blind rage that I am having to do these things.

It’s a situation where I imagine the best people to give me advice are the ones who have been through it and who aren’t here anymore to share it. I don’t know if there are words of wisdom that can be given, but if anyone on this sub can somewhat relate even on behalf of a no longer here family member, I’m desperate for something.

My husband was a lot older than you when he died of cancer but our children were still at primary school.

He didn't like talking about his feelings so didn't leave letters or recordings. I so much wish he had. But even more than that I wish I'd had the sense to make loads of videos. I've no idea why I didn't - perhaps it made it all too real.

My darling husband hated anything he associated with "making a fuss". Now his sons barely remember him though they've said they'd love to have guidance or any communication at all from him.

I think making a fuss - letters, teddies, video and photos - are exactly what is likely to make you feel empowered. And leave for when they're much older a record of your rage. It will be so reassuring for them. You can't do anything about the now but you have a lot of control over what comes after.

I’m so sorry that you are going through this OP and it’s completely understandable that you are filled with anger and fear at this stage. I had a terminal cancer diagnosis 3.5 years ago and was only given a few months to live. I’m now in remission. I refused to place my life in the hands of one cancer doctor and found myself a team of experts around the world who have helped cancer patients treat it as a chronic disease. Taking an integrative approach and doing research gave me some control over the situation and showed me that there is so much help available. Managing my mind has been a challenge but I’m now in a place where I focus on the present and being there for my family and appreciating each day as a blessing. Please DM me and I can share what’s worked for me - it’s too much to put in a message. I’m happy to help you on this journey, just as I’ve had some great help from others.

Some people survive much longer than others and there are a few who achieve remission even from stage IV cancer. There are some books about these stories - eg this one https://books.google.co.uk/books?id=VSuCDwAAQBAJ&printsec=frontcover&dq=survivors+cancer+book&hl=en&newbks=1&newbks_redir=0&sa=X&ved=2ahUKEwjZs-DymqKEAxWBS0EAHZkgBp0Q6AF6BAgOEAI#v=onepage&q=survivors%20cancer%20book&f=false. I realise this is controversial but it does happen. So sorry you're dealing with this though. x

Incidentally, I took a similar approach to shirluzza although my own diagnosis was stage III with a very high chance of progression to stage IV within a few years. I've been in remission for several years now too.

@febury as someone with a stage 4 cancer, can I just say that generally, though of course I can't speak for the OP, comments like yours, whilst I am sure they are well-meant, are actually just very upsetting and actually unhelpful.

@shirluzza what type of cancer do you have?

I'm so sorry Twig - i realise there is the potential for upset from this information and did not wish to cause any additional distress but at the same time it seems wrong not to make people aware that there are legitimate cases like this that have been documented. I've spent a long time in the online cancer community and I know of many real people who have defied the odds too, some by a little and some by a lot. It's becoming more common even if it's uncommon. But many people are still genuinely unaware that this ever happens at all and surely that can't be a good thing? I won't post anything further about this on here unless anyone specifically asks.

False hope is really upsetting and unkind. Please don’t. If it happens then it happens but it is rare.

@nobetterplace I am so deeply sorry to read about your situation. I am in a similar boat, stage IV breast cancer (March 2023), liver mets, after being given the all clear a few years before. I have DS who will be 12 in April. My DH died of a brain tumour (glioblastoma) in January 2023. When I go my son will be technically an orphan. No amount of counselling is enough to “mellow” me into thinking oh, well… I am angry beyond belief for what I am going to do to our son. For what he has already been through with his dad, my DH. Every time I think about it I crumble and am unable to breathe. At the moment I only told him what he needs to know at this stage - there is something wrong with my liver and I need to take special medicine that can only be given in a hospital (IV chemo). I had an excellent initial response to a clinical trial, but then it stopped working, and I burnt through my second line of oral chemo in 9 weeks. So, fuck me, but I am screaming with anger - my breast cancer is due to the faulty BRCA2 gene.

My DH’s sister and her husband will be DS’s legal guardians - it’s in my will. Brother in law lost both of his parents by the time he was 18 (first his mum when he was 5, from pancreatic cancer, then his dad & stepmum in a car crash), so at least he will know exactly what it’s like being without parents.

I absolutely get the anger that you are going through. 💐

@balkanscot I'm so sorry to read youre also going through this and losing your dh too. It's wonderful you've got everything I'm motion for ds future. I hope you've got a lot longer with him yet x

@Helplessandheartbroke thank you. It truly is the shittiest place to be. Never in a trillion years would I think I would find myself in a situation like this. It absolutely wasn’t on my radar, yet here we are.

@balkanscot I feel angry for you and for op. Its not fair at all. Cherish these times with ds and make amazing memories with him ❤

balkanscot, just sending my best wishes to you.

As someone with stage 4 cancer, I totally agree that such comments from febury, however well meant, as just totally upsetting. Not fair to give false hope.

@Helplessandheartbroke and @ArabellaScott Thank you. 🙏 it is a stack of shit. The fact that it will be me who will break DS’s heart eventually. It’s this sense of immense guilt that burdens me every single day.

And anger, of course, like OP. So, so much anger…

Sending hugs to @balkanscot and to op. You mustn't feel guilty. Sad and angry yes but guilty no x

I often wonder how you are. Sending so much love x

Me too, thinking about you 🩷