Struggling with asking for support!

Hi Chris, unfortunately today has not been good. He is still very agitated, and only settles for 15 minutes, if at all. He can’t sleep. He keeps getting up, and wanting to come downstairs, or a toilet trip or just will need us to be with him. This is hard, because he could fall down the stairs. I am onto Echo at the moment to see if we can get a higher meds level to help with his sleep. 

Hi Kate, sorry to hear you've had a bad one today, and bless you for being there. It's pretty much the same here. We're dispensing pain relief every 2 hours. We're waiting for the pain management centre to contact us. My wife cannot stand up straight due to the fluid in her stomach. So we also make sure she doesn't fall when toileting if that's even a word. I want to thank you for sharing with me. I am finding it helpful to vent with someone who knows. Otherwise are you ok? 

I think so. It depends on how tired I am, the weather doesn’t help. It has taken an hour to get hold of Echo. If I could just have four or five hours sleep. 

It's been a scorcher today and it really doesn't help the situation. We have a fan for my wife, but our kitchen really is a sun trap. Fingers crossed you get some sleep tonight. Her brother and I take shifts so I get 4 to 5 hours and to be honest it's not enough after a mentally and emotionally tiring day. It's terrible that it took an hour to get help. System really is overstretched. You stay strong, even through the pain. 

Thank you, I will try. Echo have been in, and administered something to help with the agitation. We shall see. 

Hi Kate,  how's things today? Did Echo help? Another day caring for our loved ones. My wife is off to hospital in the morning for her weekly drain, and to find out about her recent scan results. 1st scan in 3 months. Hope you're ok. 

Chris

Hi Chris, unfortunately another very difficult night. Echo were great, they came out three times last night. My husband had a fall in the middle of the night, and the bleeding has increased. I have managed to get him a bed at St Barnabas. I will be heading there directly. Feeling an intense sadness, as we know he won’t be coming home. 

Hi Kate, my heart goes out to you all.  It must be a very tough time for you. I'm guessing he'll get the proper care there. 

My wife is resting a lot from the meds. Like her mother, my wife will be staying with us. We personally cannot bear having her looked after by strangers which is a choice not made lightly. We all have different coping strategies, and we will stick by her until the end. Please don't think I am judging you, because that's far from my thoughts. We only want the best for our loved ones whichever way we do things. 

I hope St Barnabas isn't too far from home, so you can see him regularly.

Life does throw some shitty curve balls at us. We just have to do what's best all round. I hope you're ok Kate, sometimes it does feel like we are the forgotten ones. I've been waiting a few months now for counselling from McMillan. Hopefully it will help. 

The good news is you'll get a little more sleep which is much needed for you. 

Chris

Hi

I am in the same place as you and I was struggling thinking this just cannot be happening.  February 28th my husband went to the doctor with a swollen testicle he was given antibiotics but no change an ultrasound in March showed fluid build up which we later found can be a sign of advanced kidney cancer ! April 26th he had a CT scan 29th April results found large mass in Kidney and in bowel and liver 

1st of May they told us inoperable and he would have palliative care so 3 months to the day and  today they fitted a pump drive to his leg as he is failing not eating not drinking much draining 6 litres of fluid from him every week he is not in pain as such but is very uncomfortable I am still in shock I think and I spend my days caring for him doctor appointments district nurses MacMillan nurse and our life has changed beyond measure 

I am fortunate that I am off work and they are so supportive but someone said will I go back to work and back to normal!! After all of this I can’t even see anything that is normal my life will never be the same again !! My husband and I are both 61 how is this even possible 

sorry for the rant sometimes the thoughts just run away !!!

Sending virtal hugs, I know we all need to rant at times, along with the anger, frustration, not knowing, not sleeping, trying to carry on as normal, I am still very angry after they were treating my hubby for a year for  prostate cancer and bone mets which they said he had only 2 years to live but he didn't have, prostate cancer after all!  He has now started the correct treatment for multiple myeloma which is tough for him as the myeloma has spread to most bones.  He is having chemo and will need a bone marrow transplant & then more chemo.

I feel totally alone even though I work ( for my own sanity), my work are very understanding, my hubby goes to bed early but does nothing all day.  His muscles are wasted due to prostate treatment injections for last year!

I am so glad I didn't just take the urologist word, I could see the treatment wasn't working. 

He first saw Oncology after a year and was referred to haemotology - think they must think i'm a Karen due to my complaining and questioning.

Just sitting here now with the cat, waiting for washing machine to finish, hubby been in bed since 7pm.

Stay strong fellow carers x