Don't know what to say anymore

Hey I can imagine it will take it out of your mother especially now but it's just hoping she can get back up after it my mother done that for awhile and she got back up so hopefully she will be ok to. My mum was fitted with a driver today so I think this is the beginning of the end and it's so painful. I get what u mean tho I think none of us want to be strong right now we have no choice to be but under the surface were falling apart and every day a bit of me falls apart even more and I know it's only going to get harder and I don't want to do it. So I think we don't need to be told how strong we are if anything we need someone to say I know your falling apart. I don't tend to open up much to be honest like I won't phone or text anyone I spend so much of my day pretending I'm ok its ok that when I have five minutes to breath I break down I tend to be very honest in how I feel on here because I feel like people actually understand what I'm going through here and I understand them so I don't talk to anyone else really because they have zero idea of how hard this is. And I get annoyed at them then because they know nothing of the pain. I really struggle with people asking me how my mum is omg god it's wrecks me I feel like screaming she's still f-ing dieing how do u think she is. I have learnt to not say that lol now I just say not so good. I hope your trip goes well and your mum is ok with the travel xxx 

When I read what you put about it getting harder and you don’t want to do it I literally filled up as that’s what I keep saying…..it’s going to get harder….I have no idea what life is going to look like so I’m trying to be present and just get through each day and even sometimes hour by hour……

I mentioned my mum had this healing on Saturday well since then she’s felt more tired, her left ear is now blocked and she felt sick all day yesterday 

she spoke to the kinisthioligist (still not spelling it right) and she said that this all means the healing is working - not making her better but healing her mind as she’s suppressed her feelings well she’s always done that - but my mum said tonight she feels like she’s letting us all down by leaving us

i nearly lost it right there but I took a breath and just said it’s not her fault she is in this position and she should never say she is letting us down - god I can’t believe she actually feels like that 

I will stil be checking on here  etc if you need to talk over the next few days - I hope you manage to get some rest tonight xxx

AHH bless her my mum has said similar things I can't even write them because il break down so il just say she said similar. As a parent I think your only thought is your kids always is no matter how old you get. I have never had any healing done my self so I wouldn't really know if it's normal or not just I would definitely try anything right now so I hope she feels a bit better soon last thing she needs is to have an illness on top of it. I always took it day by day since she was diagnosed but now things seem to have changed quickly I think when they go down hill it it keeps going down then now it's literally hour by hour I have no idea what tomorrow will be or even tonight. I always new it was coming and I knew it was going to get harder but now it's here I want to run a mile I won't lie but there is nothing I can do this is totally out of my control. Thank you that means a lot same goes for you to we are all at different stages in this horrific journey but we can still all help eachother I think xxx 

Just wanted to check in with you - we have arrived in Nice the journey was ok and when we were in the taxi my mum smiled she loves this place and it was good to see her smile but as predicted journey took a lot out of her and she’s having a rest I’m sure you will understand but I don’t feel like I’m here none of this feels real 

I can imagine albeit in a different place to me that you have similar feelings right now…..I hope whatever is happening is allowing you a moment to breath xx 

Hey I'm glad you arrived safe and it's ok for your mum to have a little rest as long as she has a lovely time I know it's hard I don't feel present in my life at all but do your best to make lasting memories as I say to my mother she may have cancer but she isn't cancer she is so much more. My mum had taken massive turn for the worst today she can't walk speak or anything just a zombie in bed but this has only happened since she had her driver fitted so the nurses have been and are coming again and my mum come around a bit just now and said take it out so we will see yes she's been ill and in bed but she hasn't been a bloody zombie untill this so I'm really hoping that it's just a medication error so I'm sleeping on the sofa tonight for when she needs me thank you for thinking of me I'm doing ok despite everything I'm doing ok thank you xxx enjoy your time with your mum u both deserve a nice time xxx

Sorry to hear you're both struggling but nice if you can get away with your mum. Mine is rapidly deteriorating. She can't sit up, walk or make conversation that makes sense now. Because she has existing conditions as well as the cancer, they aren't being followed up on. The bowel surgeon  says he's done his job and it's not his department, the oncologist support nurse works part time and can't get hold of anyone who can help. It's so overwhelming.  Helping her up to go to the toilet feeling her skeletal body just made me want to burst into tears, but I'm trying to stay strong. She's slowly disappearing. It hurts her throat to swallow so she manages about 3 mouthfuls of food if that. 

I'm getting to the point I hate going to hospital as it just brings more sadness and frustration as I know hospitals are struggling with staff shortages but she's now fallen 3 times under their care. 

I have gone away for a couple of days and feel so guilty but need something else to thing about. It's consuming me and feel so selfish. I'm also sick of people asking how she is. No Better! Do they really think it helps saying how she's worsened every time? People have no idea how hard it is. 2hen they compare to grandma's and grand dads. I'm like yes but my mum is more than 20 years younger than your gran. She's too young for this. My mum is never gonna see me marry or have kids if I do, never gonna be at another birthday or family doo. Not there to remind me of silly things like insurance running out etc. It's like all I'm doing now is waiting for her to die. So sad. 

My sister comes back from abroad next week and she'll be so shocked. I'm glad she's coming but feel like it's more pressure on me to take her to visit. I'm begrudging her life, he'd escape from thisisery. Everyday being told mums fallen, or covid on the ward or noro virus. I thought hospitals were supposed to be places to get better but now they seem to be spreaders of all these viruses and puing vulnerable people  more at risk. It's awful. Can't have her home but don't trust the hospitals

Glad you made up with your sister and there is a bit more support, but it still feels lonely I know. Hope you're getting through. We are doing it because we have to, no choice. All we can do is try. Keep going. Be kind to yourself. I'm off to a show. Hope it distracts me for an evening. 

Really jealous of you able to go away with your mum cella88. That's all my mum wants, to get out of hospital and go away or even just to the cinema. But she's so frail and confused I don't think she could. Hope we can take her to see daffodils one day next week. Could perk her up. Enjoy your time.

Hey, did they take away the driver or at least look at the meds?

today has been both up and down more downs today and my mum made a comment about the hospice and said screw the hospice I want to stay here……I said why is she meeting with the  hospice again and she didn’t know 

I said do you think we should park those conversations for a bit a try and live in the moment and she agreed as she said everyone she thinks of hospice even though they are being wonderful it knocks her down so I rang my sister and asked her to call the hospice and find out what appt was for etc and see if it’s necessary right now 

so we shall see what happens….an old video of my son singing came up on FB and I okayed to my mum with my son there too and she cried and she said she really needed to cry 

she’s been a bit different since like a bit brighter - I am aware of how lucky I am having this time with her but the brick in my tummy just keeps reminding me why we are here 

I think she’s going to have a relaxing day and maybe stay in hotel tomorrow and I might take Joshua out for a bit I’m very proud of my son at 18 he’s really joining in and making my mum smile so much 

Again just taking hour by hour and I hope you are managing to take hour by hour too xxx 

Hey I know exactly how you feel because I was trying to cherish the memories after she got diagnosed but it was hard but it will always be tarnished with cancer now so it's hard. But I'm glad your mum had a cry it's awful my mum cried today it broke me but it does help u need to cry sometimes. We all do we can't always be strong. I was just thinking the exact same thing about my son he's nearly 16 and he's been amazing support he's down my mam's with me staying tonight and just having him hear as company is doing me the world of good. I'm so proud of him and I'm proud of me today the nurses said to my mum that I'm a credit to her and that was so lush to hear it's hard I won't lie keeping my mum home is hard but I'm doing the best for her and she is happy at home but I have had to give up a lot to be able to do this and many people aren't able to and there is nothing wrong with that at all sometimes a hospice is the best place for people with around the clock care and pain relief and that's been hard getting the pain relief right. They took the sickness med out of the driver as that made her go like a zombie so hopefully the next 24 hours and it's out of her system she be a bit more with it but it's the end I think it really is but all I can do is think one day at a time and know in my heart I done all I could for her and hopefully that will give me some peace. Enjoy the rest of your break with your mum I know it's hard but there may just be some moments of happiness in there to remember things can change so quickly as I have found out xxx

So today was interesting this morning was awful mum felt faint and was not in a good place at all……then she had a sleep and then was like a new person….we went shopping although her feet and legs are really swollen so that’s been a worry but Joshua won on machine last night and I haven’t seen mum smile as much as she has in ages 

we are now having our last night and actually don’t want to go home actually 

sitting out on the balcony this afternoon was lovely 

how are things with you my love? Has the change in meds helped at all?

xx

Sounds like your having a lovely time at last and I wouldn't want to come back to reality either if only you could just stay. As long as she was ok after a little nap that's good it can become overwhelming and tiring easily. Yeah the medication is out of her system now which is much better she is with it now talking but she's so weak shes in bed 24 hours now resting sleeping even to talk a few steps is hard work it's extremely difficult to watch I had a wobble early had a cry my little girl said Is nanna going to die I don't want her to die I love her omg it broke my heart I didn't think it could break more than it is but my god it did she's only 6 but I couldn't lie to her. But I took half hour out and I come back to get on with things I know in my heart that I am making her end of life the most pleasant and comfortable I can do. People keep saying how proud they are of me for doing it but u know what I'm so proud of my mother and how she is handling it and it's a privilege to be able to look after her. Things have changed so quickly the last two weeks iv hardly had time to process it to be honest. But I do enjoy hearing how your lovely trip has gone as I really do realise how quickly it can all change xxx