Struggling with asking for support!

Hi London Lass

my God so sorry everything that goes with caring is hard enough you are amazing keep on doing what you are doing 

I got my husbands last sick note the other day and it was for 84 days I was absolutely heartbroken and felt so bad as my first thought was oh dear God how can I go on for another 84 days !!!  Every day is hard and I would do anything for him but it’s 03:50 am I’m awake listening to him struggling hallucinating and speaking to all the people who are in his room with him !!! My beautiful man does not deserve this No one does 

I have had three months of this and it feels rubbish but my heart and total admiration go out to you and if being a Karen is what it takes you keep on being a Katen

my thoughts and prayers with you and everyone who are on this horrendous journey 

Hi Chris, I know you are not judging me. I had to make a medical decision based on all the factors in play. The visiting nursing staff were lovely, but they couldn’t get his agitation under control.(a bit like dementia behaviours). Also, the blood has increased with possible urine infection. My husband was suffering, and I see it as my job to get the best medical care where  possible. We are so fortunate to have got a bed in the hospice, as they have 10 beds for 400 people. You can also sleep over, and we are within half an hour. I spent time with him last night, and he was much more settled. I have asked for them to contact me if there is any slight change in his behaviours. Phones are on charge. 

Morning Kate, you did the right thing. He's not too far, and you can stay overnight which is best for him and your family. My wife has just left for her drain and scan results. Her brother has taken her while I look after our 11 year old and our doggy. I'm on tender hooks right now. I want the scan results to be ok, but deep down I'm not so sure. Waiting game now until they return around lunchtime. I do hope you're feeling better knowing your husband is getting the care he needs. Stay strong which I know is easier said than done. 

Chris

Hi London lass,

I feel for you as it's not easy for any of us that are caring for a loved one. 

It's been 17 months of various types of chem and an op in July 2023. It's the long game that make it so difficult for us. My wife is having a stomach drain this morning and scan results. Tender hooks is an understatement.

I take my hat off to everyone that is looking after a loved one with this evil disease.

One day at a time is all we have

Hi Chris, 

I read through this thread and wondered how you wife's scan was. I do hope she's got a reasonable level of comfort. 

This is my 1st time commenting on a post. I'm struggling to cope at the moment caring for my husband. We are awaiting his latest scan result from the 20th July. Don't get the results until the 19th. He has metastatic (presumed) bowel cancer. It was diagnosed late, months after ascites had developed. On palliative chemo, side effects of which are leaving him with little quality of life. 

Don't feel you have to respond if things are difficult. Take care

Hi Meerkatmindy,

Thank you for your message 

My wife's scan results yesterday told us that her cancer is not spreading, but is growing to the point that I can feel her liver tumours when I touch her belly. The specialists cannot do anymore except for managing her pain. She's sick most days, not eating much too. I'm sorry to hear about your husband. This disease is brutal. The sleepless nights, watching our loved ones slowly disappearing from who they once were is the hardest part of this.

I like this forum, and relating to others with what we're going through.

Please take care of yourself which we know is easier said than done 

I would like to progress to a face to face with anyone to not feel alone.

Yes, I have my brother in law and a couple of close friends. I feel I need to speak to anyone over a coffee as I find it helpful from previous experiences.

Chris

Hi Chris,

I'm sorry to hear of the tumour growth and your wife's continued struggles. Does she take ondansetron for nausea?

Yes, it's awful to watch your loved one change so much. It's like looking at a different person. I too feel I would benefit from meeting other people face to face, hence seeing what Maggies can offer. I'm based in Lancashire and hoping to find others for mutual support. Have you tried any groups?

Julie  

Hi Julie, 

My wife is taking a anti sickness med which doesn't really help as her stomach fills with fluid to be drained weekly. 

I'm in Hastings, shame we're not local to each other.

I hope you're ok, and have support around you and your husband.

I am seeing a McMillan counsellor on Monday for an initial chat. I'm also a member of AA, and I speak to my sponsor when needed. 

Today isn't a good day so far with regards to her pain.

Try to have a good day Julie

Chris

Hi Chris,

My husband was having fortnightly ascites drains like your wife. Chemo has stopped it filling up. He too had large volumes - over 7 litres once! Its difficult to manage the nausea that comes with that. 

I'm glad you have some support. It can't be easy dealing with this and addiction, though it sounds like you are doing really well. 

I'm about to see family now, hope I can be reasonable company. Pulled up for a cry first! Good grief I'm not normally like this. 

Yes, shame you aren't nearer. We might be able to message privately to support one another, if that's allowed.

You too try to have a reasonable day - best you can. 

Julie  

Hi Julie,

Unfortunately my wife's chemo was withdrawn 3 months ago due to not working.

Her fluid build up started shortly after that.

To be honest I haven't cried this much. I'm surprised I've got any tears left.

I hope all goes well with your family visit. 

Chris x