Mum is on palliative care - unexpected

Hi

This is my first post here.

In September mum received the news that she had bowel cancer, and would need chemo, radio and to have a colostomy bag for 5 months and then they'd operate and everything would be good. Everything looked simple and it was 'one of the best' cancers to have as was easy to treat.

She had her colostomy operation on NYE and a couple of weeks later had to go back to have it redone as it had gone in on itself. The second operation took her longer to get over but she got through it. She had chemo and radiotherapy scheduled for 5 weeks - chemo as a tablet - and about 4 weeks in she got a really bad chest infection that she was admitted for, they stopped chemo so as not to lower her immune system more and finished radiotherapy while she was in the hospital.

She had an MRI and CT scan and we were told by the ward doctor that she had some spots on her peritoneal wall and one on her liver and that this wasn't good news but her consultant would go through everything at her next appointment in about a week and a half. We spent the next few days stunned and worried. At the appointment, the consultant told us not to worry the spot on her liver was tiny and could easily be removed and the spots on her peritoneal wall were radiation fuzz dissipating and was nothing to worry about and she scheduled a Petscan for early May. And her next consultant appt for 3rd June where we'd sort the operation to remove the tumour. 

A couple of weeks ago she started throwing up and was admitted again, she was in for about a week and had her Petscan while she was there and was discharged last Thursday.

Since being home she's been very short of breath and my dad got a doctor round to the house on Wednesday and the doctor said she had some fluid around her lungs and he got an ambulance to take her back to the hospital. I left work and went and met her and my dad at the hospital where they said she'd have a drain but in and that would help.

I went home and called my dad at 9 to check how she was. And he told me it wasn't good news, the cancer had spread and there's nothing they could do and they weren't going to operate as the cancer had spread to her peritoneal wall.

I know, that life is *** and not fair but - I think understandably - we're all really confused as to how we've been told she'll be fine it's nothing to worry about radiation fuzz etc and now she's on palliative care. My dad is angry that they messed up and couldn't tell it was cancer before, my mum is in a lot of pain and again feels lied to that she's been told time and the again everything will be fine and now it's not.

I'm lost. My mum and dad have been together 49 years in July (dad a young 75, mum a young 70) mum has done everything for dad, he doesn't know how to cook much it's taken him a while to learn how to use the washing machine and so I'm scared for him. My brother lives in the US and is very close to my mum, he's had issues in the past with his mental health and bothy parents are worried how he's going to deal with this. 

I have a good job that are very understanding but I also suffered from situational depression a few years ago when my grandmother died, my marriage broke up and I was in a job I hated. I've since remarried the most amazing man but I'm scared I'm going to get ill again - but I feel selfish for thinking about me because I'm not the one dying or losing a spouse. I'm scared how my dad and brother will cope,I'm scared I won't see my brother agin as he found it hard to come over here after the death of my grandmother but came over last year to surprise my mum for her 70th.

I don't know what to do. I just keep crying at home and trying to be very organised and practical at the hospital, although spent most of the day crying with mum telling me to stop - which I feel *** for because she doesn't need that.

I don't have many friends and no one close I can really talk to, they all have families and their own issues. I'm 42 but feel about 15 at the moment.

I'm not ready for this.

When my parents went to see.my brother a couple of years ago I said to my husband I don't know how I'd cope with anything happening to her as it killed me not being able to call her whenever I wanted for 3 weeks.  I've just been crying now thinking about a time when she won't be here.

And I feel *** for saying that because I know this happens to most people and I feel again I'm being selfish.

I don't know what I'm expecting in response to this post but I just needed to get it all out. Sorry it's so long and sorry if it's not in the right place.

 

 

  • I am so so sorry to read your news, this is a safe place to get it all out, you are understandably confused and angry.....

    I do know how it feels to wait for someone to die, I sadly went through this with my own mum a few years back. I wish I had words of wisdom for you......

    Post your feelings on here.....there will always be a listening ear on here....xxxxxx

  • First of all... sending you a massive hug. I’ve been where you are and it’s not a nice place to be... trust me please... you will get through this. 

    I lost my Dad last August to prostate cancer. He was always considered a palliative care patient from diagnosis ... he was diagnosed about 3 years prior to his passing. He received treatment until he stopped responding... which was 7 months before he passed. 

    Your next steps are to ensure that your Mum receives the care she’s entitled to. With my Dad.. he wanted to stay at home and so  a care package was put in place. That meant he had carers coming to tend to his needs 4 times a day. As a palliative care patient your Mum is entitled to this.. it is not means tested. You need to get in touch with ‘continuing health care’... if she is still in hospital it can be done more quickly (my Dad was fast tracked at this stage as it was his final weeks) We could have got help sooner but that was what was right for my Dad. 

    I completely understand your confusion about what you’ve been told... unfortunately we had similar experience and in my mind things were missed. You can make a complaint if you wish to (make a note of everything) but right now isn’t the time to do it. Right now is the time to be looking after your Mum and helping her to feel as comfortable as is possible. 

    My Dad was/still is my world and I thought I would fall apart ... I didn’t. Towards the end I recognised that it was his time. If the truth be known.... I don’t know... even though he did remarkably well facing a dire diagnosis ... I couldn’t have watched him suffer any longer and when it happened, I was devastated but along with that came relief. Relief that there was no more suffering. I’m talk ing emotionally as well... physically his pain etc was controlled and for that I’m forever thankful. 

    I adored my Dad... and it’s bringing tears to my eyes writing this but I swear... no matter what happens you’ll get through this. I don’t really know what else to write other than... stay strong for your Mum, get all the help you can and you need to push for that, in the area we live it was difficult and it was only because he was in hospital a few months before he passed we got the care he was entitled to. Be pushy/be demanding if necessary. 

    Please feel free to message me. Would be happy to continue to chat. I’m also 42 but ... a loss of a parent reverts you to childhood. You’ll go through every single emotion possible and that’s all normal. When I was going through it people kept saying that I must look after myself ... to be honest... I didn’t... I took time off work to help my Mum look after him when the carers weren’t there. I didn’t leave his side... it probably wasn’t healthy for me but I’m glad I did that. 

     

    I will stop rambling now. Again.. please do message if you feel like it. We are here to help you through this x 

  • Thank you I appreciate it. xx

  • I just wanted to say my mum had a diagnosis of lung cancer spread to nodes and liver yesterday . I am 44 and only child. We have gone straight to palliative care and how you’re feeling I am feeling too. I’m in shock, I’m angry , I’m devastated. One month ago we were all celebrating my birthday without a care in the world. The road ahead is going to be hard but please message here when you need too. I have anxiety and the doctor has given me sime time off to get my head straight. Please look after yourself and seek GP advice xxx

  • Thank you, I'm sorry about your dad.

    We have discussed her coming home with the Macmillan nurse and they're aiming to do it the middle of this coming week, but last night we've found out her kidneys aren't working too well and she's had a catheter fitted. So she's currently got a chest drain, colostomy bag and catheter. Shes' in pain and also has no appetite so isn't eating, they've said once she's stable she can come home but at the moment I can't see there being a time when she is stable.

    My brother has been able to get a flight getting him in Tuesday morning which is good and I hope it's in time, although when I spoke to a doctor yesterday morning and said my brother would be here in a week (his original ticket)  asked if that was enough time and she said yes, of course, don't worry, but that was before the catheter. 

    Yesterday morning her blood pressure was 55/37 it had gone up to 71/49 after having a fluid IV but is still low.

    I was talking to my husband last night and he was saying how much she's changed and lost loads of weight, but I think because I've seen her a couple of times a week for the last few months I haven't noticed it as much and that's made this hard as she's still my strong and fierce mum whereas other people are seeing a frailer person.

    I feel so much guilt like right now, I'm sat here typing when she's in hospital on her own and in pain, I feel I'm not suffering enough. It's so hard to explain and I know it's so crazy.

     

    x

  • Thank you, I'm so sorry. It's so hard, isn't it? There's shock and numbness but at the same time so much emotion and it's overwhelming. I keep thinking of this time last year..., this time 8 months ago..., this time 6 months ago..., even this time 2 months ago... So to have that for one month, I can't imagine.

    I've got some CBD oil I've taken a bit of yesterday, but probably need to take it more regularly.

    x

  • Hi :) ok... so  the aim is to bring her home. Please make sure they have fast tracked a care package for her. The Macmillan nurses are a separate thing. They don’t make it obvious what’s available... if she’s in hospital .. from what we were told... things can be put in place more quickly. You might have to dig around/ask questions but she’s entitled to this. The carers can help her with whatever she needs. My Dad wasn’t keen at first but when he couldn’t do things anymore he accepted it all with a smile bless him. 

    The carers will bed bath her if she wants, tend to toileting needs  brush her hair, cook/prepare meals. They don’t administer medicines or anything like that. Towards the very end we had overnight carers too so we could sleep a little. We could not have managed without them. I know it’s scary my dad is the last person In the world that would have wanted people coming in to do that kind of thing but in the end I think he kind of enjoyed seeing the different faces. My Dad was bed bound for the last couple of months... so it may be that your Mum will require different things but that’s what they’re there for. Please make use of them as they’re a Godsend. District nurses should also be involved as she will be on the Gold Standards Framework. My Dad had a catheter at home so don’t worry about that. Things can be put In place. 

     

    One thing i would say... depending on how much your Mum needs I would consider hospice/ that obviously depends on what your Mum wants though. One benefit of hospice is if you needed anything ... everything is to hand there. We would often have a wait if we needed anything which was very stressful. 

    Sending you and your family so much love. I found it very hard to accept but like I keep saying... the most important thing is for your Mum to be comfortable and that is possible. We watched a lot of Dad’s favourite films, played his favourite music. Chatted about fun holidays we had been on. 

    When he passed, it happened very quickly.   I had watched him so closely for a year wondering if it could happen ... there were many times I thought it was going to. When it does happen, you just know and at that point it’s peaceful. Sheer peace. The lead up to his passing... my Dad had the death rattle... I would say that went on for 2 days/nights. Not everyone has that, everybody is different. Also.. what you might think to be the death rattle isn’t necessarily. 

    I recall reading posts here when I was going through it and still hoping for a miracle. It’s so hard my love but try your best to stay strong. I believe in something after this life .... don’t know if you do and I’m not going to preach but I did take comfort from the fact that towards the very end... my Dad opened his eyes and told us that his brother (who passed many years before) was here and looking after him. I like to think there was something in that... it was incredibly moving and bearing In mind he hadn’t/couldn’t really speak clearly for the last few days of his life... for him to say those words so clearly was a great comfort. 

    Message me anytime x