Dear Vronsjohn, I can't find the words but I am thinking of you at this difficult time, in my thoughts and prayers.

How are you going, i remember those last few days with my husband were so tough..accepting he was going and we had lost and there was nothing we could do but let him go was just awful...all we could do was be there holding his hand and reassuring him with our presence that he was loved...you are not alone, lots of us have sadly had this journey, my thoughts and prayers are with you xx

Thank you for your reply

it is just so hard after being told hours to short days it has now been 5 days of not leaving  her bedside. I am finding the whole end of life process very difficult to accept in that  we were advised at point  of being told that there was nothing more that could be done to stop it and that it would be hours to short days and normal process would be to remove her drip and as she was not always fully communitative to only provide water and food when she requested it when asked. I just feel that whilst understand logic I should of also been told of it going to possible long days weeks but we were not and have had without intervention to watch essentially each day goes on my mother be affected more by lack of food and water than the brain cancer which we were told would be last stage as this would cause a disconnect between her brain and breathing though this has not happened and I can accept this happening but not when her body is shutting down primarily to no of food and water. Fortunately I am here and have been able to clarify with my mum through her yes no touch if she wants food or water and nurses have supported this process and then seen that mum wants to swallow and drink. I just don't know what would happen if I wasn't here. The end result will still be the same but I just want my mum whilst still alive to be treated as she is still alive rather than left in corner room to slowly pass and justified because of her initial lack of response to yes/no question. As you can tell I have started become angry as even asking for MRI or CT to assess level of degregation after now entering 6th day of being stable is not normal protocol during end of life care which I only want to know for assessing ability/if stable to make move to hospice worthwhile and even to give us some sense of updated potential passing time frames as have been watching every breath for the first 24hrs and resaid last words now nearly 20 times and feel this information would help and whilst I will ask for it I find it it something I have to justify for rather be supportively offered. 
 

Today was hard as for first time I realise speaking to a doctor that the system in place now is one created through Covid when visitation was completely restricted meaning dedicated consultants etc do not visit wards and is still based on a care service without visitors meaning their is no designated doctor etc or person who I see but instead get to see 60 plus differing doctors/nurses none who have an direct reaponsibility for my mums care and particularly end of life support. 
 

dealing with loss is hard on your own and lucky (thank god) my girlfriend has supported me as I would not be here as I can only describe feeling alone in a crowded room of 100 helpful staff but who are not fully connected to me or mum as I expected and hoped meaning say 5 repeated verbal emotional breakdowns become 55 due to level of daily differing interaction.

As result starting to a feel a burden because of level of time this takes up when having to revisit 

Dear Vronsjohn

I have just read your post and can 100% relate to what you are going through. 
My younger sister was initially diagnosed with Breast Cancer which then spread to the Cerebal Spinal Fluid resulting in Leptomeningeal Disease.  

I remember the end of life stage like it was yesterday. We were told it could be minutes, hours or a few days from the day were told to say our goodbyes, my sister stayed with us for a further 11 days. 

During the whole time she had cancer, those were the longest, darkest and hardest days of not knowing when she would take her last breath. 
It really felt that because she was dying, nothing needed to be done, no scans, no blood pressure checks, nothing and it felt like she was just left to deterioate and die.

Looking back on those days, I can completely understand why the doctors and nurses did what they did. It didn't seem like it at the time because every minute felt like an hour and it felt like I was being ignored and neglected. 
However, looking back, I have 100% respect for the oncology nurses. How hard it must be to see families saying goodbye to loved ones, knowing there is nothing you can do but wait and be there for the family when the time comes. 
Only now can I see that waiting for the next blood results, scan results and blood pressure results only prolongs the pain and gives an element of hope that things may improve. 
Leptomeningeal Disease is a disease I knew nothing about when my sister was first diagnosed and I couldn't find anyone who understood what Leptomeningeal was it even heard of it.
It's still very rare to find anyone else who has any kind of understanding of the disease due to its rarity.

It's been 18mths since my sister passed, thankfully we were not going through covid. I cannot imagine how hard this is for you, on top of the devastating news that Leptomeningeal brings.

My sister stopped communication of any kind around three days before she took her last breath. 
Her heart rate continued to beat really fast, especially on the last day, up to 168bpm. I took a trace from my iPhone and saved it, it's now tattooed on my foot with her name. 

All machines were turned off and she was only given morphine (Medazalam) to keep any pain at bay every few hours for about 7-8 days.
She was nil by mouth for the whole 11 days, we could only keep her lips moist with a sponge. 

My sister suffered seizures so we knew she was not in a stable state to be able to transfer her to any hospice so we stayed at the hospital.

If your Mum's wish is to be in a hospice during the final statges, do you have a cancer nurse that can help on your behalf? Marie Curie and Macmilluon both support hospice transfers, maybe worth trying to call them to arrange if it's an option. 

There is no easy way to know when or how long it will take or what the final signs are. You will just know things are different. You will know more than the nurses and no one will know your Mum more than you. 
The end of life stages are different for everyone however my sisters breathing suddenly became very shallow and then stopped. 
She remained very pink in colour due to the racing heart rate however that quickly drained after she passed but not in a bad way, she was full beautiful. 
My older sister changed her into clean comfortable clothes and gave her a final wash after she had passed. It gave her comfort to do that, she's a palliative care nurse so it was second nature in some way.
We also had the radio playing in the hospital so it felt a little more calm. 

I'm glad you are not alone, you will need the support of your girlfriend and family over the coming weeks.

Use this time to say anything to your Mum that you'd like, I believe my sister could hear me right up to the last second. 
 

Stay strong and if you ever want to talk, scream or shout about cancer, Leptomeningeal or anything else, feel free to message me. 
 

Sending you all my strength at this is very, very sad time xx