Mum diagnosed with Liver, lymphatic and lung cancer

Hi nighthawk, 

I'm sorry for the news you received, it's hard when it's not expected, but feel out situation is very alike. My mom was diagnosed middle of Dec with cancer that has spread to 3 other areas. 

It's the not knowing similar to yourself regarding how much Time have we actually got left, something My mom doesn't want to know but I feel may be more limited that I allow myself to think. We are seeing the oncology doctor tomorrow without my mom, as quite simply she said she has heard enough. 

Just know you are a strength to them both, and to give yourself time, I know how hard it can be to feel at limbo. 

Kindest regards

Can I ask. . . Has it taken from the middle of December until now for Oncology to make contact with you?? A whole month is a long time to wait in limbo after such a major diagnosis. My heart goes to you. 
I just seem to be annoying my Mum and Dad with everything I am trying to do which isn’t much, even annoyed Dad when I said to expect a delivery tomorrow with heavy duty plastic cutlery for Mum as a Macmillian nurse advised this as metal cutlery can lead to cancer patients not eating. Its extra hard when all you want to do is help and be there and they don’t want it. I say they but all Mum is doing is sleeping 98% of each day and night. 
I really hope there is some ray of light in all the darkness for you tomorrow with helpful strategies. 
warmest wishes sent to you.

As you can tell I don't sleep much, mom was supposed to see oncology on 15th Dec, after we were told it was present in her liver ( at this stage we weren't sure where primary was) but mom got admitted in a&e on the 13th as the pain was unbearable and she had a bad reaction to a morphine patch. 

During this a&e stay we were told everything, that it started in her colon and has spread to liver, lining and back. I informed oncology that whilst my mom don't want answers I do need them as the amounting what it's get higher every day.

It's a hard line to tread at times,I feel the same as you I doing more for my mom and dad but also get the look like to say your here again.

My mom is also sleeping alot, and whilst that should settle me to know she's not in pain asleep, it's the amount of sleep that I'm like her body is slowly giving in. My concerns for the after part keep me awake most nights. 

Mum’s primary is the liver and secondary lungs and lymph nodes. It is extremely concerning as you say about how much she is sleeping. My Mum was the one that stayed up late until 2-3am. We always talked after Dad had gone to bed late at night. 
I am up all night myself, not due to Mum, I carer for my housemate that has extensive physical and mental needs but my sleep in the late mornings is wrecked and struggling to eat which is dangerous as I am very under weight due to food intolerance. I have major health issues myself with my GI tract and a bone tumour in my arm. I if out more about my arm on the 18th. I am so scared of my own health now and don’t know that I have the strength to go through what may be on the cards for myself without my Mum. She has also always been the family glue. I feel like when time ends for Mum that I am going to loss my whole family. 

Not that age is relevant, it’s just a chronological marker but do you mind me asking your Mum’s age? 
I don’t know how progressed your Dad’s dementia is . . . i know the position your in all too well where you want to spend as much time as possible with before your Dad doesn’t recognise you anymore also but your presence doesn’t seem or feel welcome. Entering your parents home is extremely hard at end times. 

The after part is what is extremely distressing to myself also. Just feels like I am not just losing my Mum but everything in my life that Mum made possible day to day, month to month and each year. 

warmest thought, love and light sent to you in such dark times. 

Hi Dolusc, just touching base to find out how things went yesterday with your Oncology talk for you Mum? 

Hi nighthawk, 

Mom is 66 her bday was in January. I feel the same as you knowing my dad's dementia it was always my mom just being there that made me think if dad is having a bad day it will be okay as mom is there. Dad's dementia is apprently stable but I have noticed more things in the last few months. There is zero help as all I am told is he has dementia you know the diagnosis. 

In regards to yesterday oncology meeting firstly the surgeon was lovely, and explained things well enough for me to understand, sadly he confirmed further spread was detected in mom's spleen. But the next part throw me, he believed mom has had cancer for over 12 months, and if she was under his care he would have done further tests in March 2022 as her blood results showed low levels and she was anemic on every blood test since then which indicates her bowel was bleeding. 

He confirmed there was missed opportunities and has offered us to go to PALS to get answers. I feel saddened that we will never know if treatment would have been an option and my mom's end would not be as bleak as it is. Based on yesterday I will be continuing to fight for the truth as no family should go through their mom having 40 plus appts ( for different things) but at every appt we made it clear mom was not well and this had continued for many months. And  admitted twice into a&e where in August they simply gave her a canula and after 4 days sent her home. 

I'm sad today and thoughts and what if feel heavy. Everyone states how great NHS is but in my case I feel let down. 

I hope your appt yourself goes okay, that's alot to take in as well as caring for your parents.

Hoping all goes okay for you x x 

Hi Dolusc 

I am so sorry you have been treated like this. It definitely shouts out negligence. We have to be grateful that we have the NHS but it definitely is not what it once was. The pandemic has ruined them. 
My mum’s situation may not be identical but I also live with the what if’s and trying very hard not to as we can’t change the past. If she had only seen the doctors when I asked approx 2 years ago we could have years more with her but she chose not too. Even 2 months ago when i noticed a massive change in her physically and mentally and she still didn’t go to the doctors. I am trying not to dwell on this and the time it has stolen from our Mum and family.

I did however find out tonight why Mum has been so out of it the last day or two. . . She accidentally overdosed on her codeine phosphate. She toke the wrong tablets and at the wrong time, ended up taking two days worth. Sad thing is that Dad didn’t call for medical advice let alone take her to A&E. He has just been letting her sleep it off. With her liver and having dodgy kidneys along with her diventricular disease and her lungs this could have serious consequences. 

Hugs, strength, light and love sent to you. 

Today was a hard and exhausting day. I went to visit Mum for 30 mins. It’s crazy the transformation in just two weeks. She has lost around10kg of weight and doesn’t want to eat, she is als9 shaking like a leaf even though Dad now has the heating on constantly. It was also very hard to hear that she has basically given up. She doesn’t want any more poking and prodding and doesn’t want chemo or radiation. I am wondering if she would at least consider immunotherapy and am waiting on Dad to given the go ahead for me to order high strength turkey tail and 6 mushroom complex. These have been used for decades by other countries to support cancer patients that don’t want to do chemo and such. 
Mum seemed to have fight about here when we knew it was in her liver but I feel it was just too much for here when she found out it had spread into the lungs and lymphatic system. I know she wants to just slip away in her sleep in her own bed but I also don’t think she realises what that will do to Dad. They still share a room and bed. 
I have asked Dad to speak to their GP tomorrow and ask them for the protein multivitamin meal replacement shakes. 
Is there anything anyone else can suggest? 

Hi nighthawk, 

That sounds so tough, esp as your mom seems long in her emotions right now. 

The only thing I know of is the fortisip drinks, you can get them on prescription, and help with vitamins and weight loss etc. 

Also just as an afterthought maybe it would be nice if possible to buy your mom some fluffy hoodie snoodie fleeces. I brought my mom 2 (primark only) just as she too was cold all the time. She said it was a lovely gesture so maybe something small may help to show your mom I'm hearing you when you say things, which I'm sure you do as your seeking advice and thinking of her always. 

Hope the above helps much love to you x I prey your mom feels more like her old self x x 

Thanks Dolusc, Mum has one of those but she wasn’t wearing it. Don’t know why. Mum isn’t saying much she forced me to take the delivery of the heavy duty plastic cutlery away saying they have plenty of the white one. I just wanted her to have decent heavy duty ones that were as close to metal cutlery as possible. She was trying to get me to take the books away I bought but said I didn’t have the receipt so just donate them or whatever. I don’t care less about stuff like that right now. I did take her fake purple and white roses as I didn’t want her affected by real ones. Don’t know how appropriated these were. Cadbury purple is her favourite so I hope she liked them. I really, really, really hope that after she is over the shock she can gain some of her strength back. Really want the chance to create a special memory before she is gone. 
How are you doing yourself? It’s good to check in on each other. Love and hugs of comfort to you. Xx