Had enough now

hello Nala, I read what you wrote and its devastating to be where you are, How do you know that stopping your meds with hasten the end. maybe stopping will make you  feel worse. I say treat yourself to anything that will make you more comfortable including meds or whatever other pleasure you enjoy....

You do whatever it Is that you can do and make the most of it. 

Apparently. 

I was sent home from the hospice in November to be with my wife, I just wasn't expected to still be alive now.

I'm pain-free,  yes I may have the odd niggles here and there but nothing to concern me. 

I have carers in 3 times a day and the district nurse checks up now and then, I also have a nurse specialist who checks in .

Draing the fluid isn't an option, they've already discussed that with the medics at the hospice,  we even have the lymphadema (spelt wrong) team involved and they don't know what to do for the best,  they are coming out to see about stocking for my legs to see if that helps with reducing the fluid but the fear is, where will the fluid then move too? There's a strong risk it'll move to my lungs or heart and that won't be good, I'm already on 4 lots of water tablets and nothing is going down, my feet and ankles are like balloons,  the tops of my legs, hips, stomach and my neither regions are also swollen with fluid, draining isn't much of an option as the swelling is due to my lymphatic system failing and my heart failing , so going back into the hospice wouldn't get anything else done and as it's an hour from me it would mean my wife not only working all day  going home to sort the animals out, there is no one else as stepdaughter also works and is heavily pregnant with her own stresses but then my wife will have to travel the hour to come and see me and travel back home again and I'd still be in the same situation as I am now, so what would be the point? 

Hi Nala66 

I'm very sorry to read of all the factors working against you at the minute. I can see that it is an impossible situation and my heart goes out to you. The only thing I can suggest is to make full use of your carers in terms of your hygiene needs etc. I don't know if stopping your meds is the answer, it may just make you stressed, in pain and more uncomfortable.

I hope you find some nice moments in your day today.

A x

Hi Nala66 ,

So sorry to read your post ,I have been thinking about when is enough a lot recently.and your post helped I'm not the only one thinking about this 

I'm not as far progressed as yourself just waiting for scan results to see if I'm starting end of life care or getting another 3 months of treatment.

It's a very personal choice,your right it's not living, just being kept alive,if we were pets they would have put us to sleep by now.

I talked about it with my oncologist and it was like you should never ask to refuse treatment ( all right for them to say it when not living with the  daily pain)

As far as I can work out there is no good answers it's when your ready your ready 

Sorry to be so down I'm usually very positive but thanks for writing your message.

All the best Ryan 

HI Nala Really sorry to hear your situation and thank you for sharing with us and hope you get some good moments before heading off to the party that we all are going to soon. That's the way I think of it anyway to keep my sanity and spirits up excuse the pun All the Best Regards Minmax X

Hi Ryan I am in the similar situation and find out tomorrow  if the Chemo is working they can't operate as its two sites in neck , lungs and big tumour 8.5cm on liver. Its weird I suppose because we are all going down a road we havnt gone down before but I havnt a problem with it just dont want to be in excruciating pain. Let's hope we both get the results we want . All the Best Regards Minmax 

The carers are good at what they do, mostly anyway .

I just dread the day when I can no longer get out of bed then I'd have to go to the toilet in a nappy and sit in it until either my wife comes home from work or the carers are due to visit .

I can already see how degrading that's going to be,  it's bad enough having someone to help me clean up after using the commode 

I know  stopping the pain meds will only make the pain come back etc and then I'll be back to square one but it's just how I feel at times and I feel people surely must be getting bored of me being still alive now, I know my wife isn't but my stepdaughter and her husband used to call in at least 3 times a week, they no longer do that , people that would text at least once a week have also stopped and hardly bother at all now and apart from wondering if they are now fed up of waiting, they think I'm maybe putting it all on, I keep getting told how well I look, I don't feel it, I feel constantly exhausted and have nothing to look forward to during the day, even if my wife manages to get me out on her day off, it's a chore getting me to the car and by that time I'm so drained and no longer want to go out.

It's true, if I was an animal I'd have been put down by now .

They were going to try me on IV chemo last year, to see if it would shrink some of the tumours in my lungs, I even had a picc line inserted into my chest and a date for the chemo to start bur a week before the chemo was due to be started I was rushed into hospital with breathing difficulties and they found fluid on my lungs, they drained them but apart from chronic pain and discomfort it didn't work, at that time I already knew the right middle lobe had collapsed,, I didn't know the bottom lobe had also collapsed and they were hoping that by removing the fluid it would reinflate,  it didn't,  then the oncologist and breast cancer nurse came to me and said I'd not be undergoing chemo after all, my body wouldn't cope with the side effects and I was too poorly so the picc line would be removed,  then they called my wife in and dropped the bombshell that I'd not see Christmas and went into a hospice,  put on steroids and painkillers and although I've perked up, I'm now exsiting rather than living. 

Being sat in bed permanently isn't anything to look forward too. 

I hope you do get to have more treatment, I'll keep my fingers crossed for you .

I'm too exhausted and drained to enjoy or have any good moments but thank you , I guess I can party in the afterlife,  that's all I can look forward too