Mama is on end of life care

Hi

It's 2:30am and for the first time in a while I am really struggling to sleep. Today me (23) and my sister (29) found out that our beloved mother (52) has probably a few weeks left to live during what we expected would be a meeting to discuss a plan for her chemotherapy. She was diagnosed with suspected advanced cancer (metastasis) around 2 and a half months ago and since then it has felt like the healthcare system has let us down continuously and completely broken our trust. I don't know if i'm angry at them or the cancer, but i can't shake the feeling that if it was the doctors mother or child, a treatment plan wouldn't have taken so long. We are just a statistic.

I don't mean to sound so cruel. We complained to the Health Secretary and local MP but by this point is was already too late. too many promises were broken and results dragged out. Maybe she could have handled some chemo two months ago but not anymore. 

I hate myself for not being there enough, for not doing enough, for every mistake that i made. Me and my sister will be having to clear out the house, and find a place to live, probably going our separate ways. I am unemployed and cant mentally cope right now. I've tried to talk to friends but I don't have many and i feel i can't expect them to make me feel better. I will try talking to some more friends tomorrow. I have been living with my mother my whole life and only left to go traveling for just over a year in total. I'm getting thrown into a new life going to have to find a place to live with my cat.

I find myself wondering what is the point of life when pain like this exists (not to frighten anyone, just a feeling i am experiencing). I felt better after reading some posts on here and one said that this is probably one of the hardest things a human has to go through, losing a mother. Just feel like it's all my fault somehow and that i'm getting punished for being a bad human. 

 

I will try to spend as much time with her as possible while also figuring out my future. I hope tomorrow night i will be able to sleep better but i also know it's a long road ahead of me. Trying to enjoy the little things in life like my cat snoring or the elderflower tree which grows next to my house which i'm not gonna be living in for too much longer. When I took her to A&E last night i didn't know that she wouldn't be stepping foot into our home again and now everything's come crashing down at once. two days ago we were still hopeful that chemo might be an option. was i lying to myself ? why couldn't have the doctors been a bit more transparent with us the past few months ? I am sad that she won't be there when i get married some day. 

I am just grateful that I got the best mum in the entire world and perhaps she will be going back into the arms of her own mother who also died when mum was only 27 (i never got to meet her but i know they were very close). 

Just wish they would build another hospital in my town. that was part of the problem i think. yesterday there were 6 ambulances with patients waiting to go into A&E. I grew up thinking that if you got cancer they give you a fast pass thru all the doctors and appointments so that they can start treating you straight away - so this experience has shattered me. She's been visiting the doctors since Dec 2020 and was constipated for like 6 months before the doctors even gave her a scan. What if ? What does it matter anymore - maybe it was meant to be like this.

I feel a bit better after writing this out i guess. Maybe i will try to sleep. I hope the healthcare system improves and i hope that if anyone is going thru anything similar then you feel less alone. I trust i will figure everything out and that things will fall into place somehow. 

Parents
  •  Hello KittyKali

    I am so sorry, I'm a full time carera for my mum who I live with.  If you read my story in my blog I am in the same situation as you, surgeons at my local hospital told us we should be greatful they saved my mums life and brought her time.  I don't understand why my local hospital here in London has such a great reputation, I am so desperate for help.  Asked my GP for anti depressants the other week, I'm in a mess. Its been a tough 8 months and its going to get worse because of my local hospital, who totally washed their hands with my mum once they found a tumour on her liver.  She keeps going going down with cholecystitis, their idea instead of operating on her is to give her rotating antibiotics until the infection kills her or she goes into liver failure from the medication. She hasn't been able to start chemo because of the infections, kept fobbing us off, she was about to have a prosedure to unblock her bile duct when they did a MRI scan and it showed a tumour on her liver, it gave them a good excuse.  Now I have no trust in that hospital.

Reply
  •  Hello KittyKali

    I am so sorry, I'm a full time carera for my mum who I live with.  If you read my story in my blog I am in the same situation as you, surgeons at my local hospital told us we should be greatful they saved my mums life and brought her time.  I don't understand why my local hospital here in London has such a great reputation, I am so desperate for help.  Asked my GP for anti depressants the other week, I'm in a mess. Its been a tough 8 months and its going to get worse because of my local hospital, who totally washed their hands with my mum once they found a tumour on her liver.  She keeps going going down with cholecystitis, their idea instead of operating on her is to give her rotating antibiotics until the infection kills her or she goes into liver failure from the medication. She hasn't been able to start chemo because of the infections, kept fobbing us off, she was about to have a prosedure to unblock her bile duct when they did a MRI scan and it showed a tumour on her liver, it gave them a good excuse.  Now I have no trust in that hospital.

Children
  • Hey. Thanks for taking the time to write to me. I read your story on your page and it sounds so painful. I'm so sorry it got dragged out so painfully for you - that's partly why my mum agreed with the doctor about not having treatment in the end- as that road is unpredictable (and obviously by this point her body can't take it anymore, but she was still willing to try up until that point). I really wish you had been treated nicer and fairer by the staff- as it's such a personal matter. Cancer really does feel like the closes thing to hell. 

    I understand your mother is keen to live and keep trying. and i guess that's both a blessing and a curse. who really knows what the right thing to do is? well done for sticking by her side with her and her decisions. i only hope that you are managing to enjoy your time together somehow and laugh sometimes and hug. be in the present moment. i can't imagine dealing with busy london so very grateful to be in a town. at least there's a nice place for end of life care if a bed opens up. hoping for peace for you both. complain to the health secretary if you feel you need to/have energy for it. i know caring full time is extremely exhausting. please make sure to take a little time to look after yourself, as i think it's the people who put everyone before themselves all throughout life which actually end up falling ill, such is the case of my mum. you always hear people saying - 'i can't believe she died- she was always so selfless and put everyone in front of her'.. and it might be a good lesson to find the balance between selfish and selfless. god bless you. take care.