Anticipatory Grief

Hi Meerkatmindy 

welcome to our community, I hope you find it a useful adjunct to the other things you mention. I almost always drop in on our local Maggies when I am passing and to me it almost feels like it sucks some of the stress out of me. My wife has stable but incurable Leiomyosarcoma and it has been an often challenging journey. Now we are in the state of living with cancer rather than anything else but with the right help that sort of works for us.

We have a really great piece on here around anticipatory grief, I know I spent a lot of time in that state and with help came to learn to appreciate what we have. 

<<hugs>>

Steve

Hi Steve,

Thanks for your reply. I'm glad your wife is stable, long may it continue. I'm also glad to hear Maggies has helped you. I'm hoping for the same.

I'll read the anticipatory grief article.

Hugs to you and you family.

Julie  

I don’t know if I can help you, but I certainly understand what you’re going through. My husband had bowel cancer with mets to his lungs, peritoneum and lymph. We knew from the first that it was inoperable - and understood that it was terminal  very quickly, with a prognosis of 6-10 months. I think that ‘anticipatory grief’ perfectly sums up how I lived from that moment onwards.

The first chemo he had ‘Folfox’, did not work and all tumours continued to grow quickly. ‘Folfiri’ followed and there was a period of 3 - 4 months where he was ‘stable’ in terms of tumour growth/shrinkage. But the side effects outweighed the ‘stability’ and the chemo stopped in December. I have to say that, for him/us, once that happened, and the palliative care team took over, Stephen’s every day experience was SO much better. He hated being dictated to by the cancer and the ‘treatment’. The pain management was superb, and he died in June, without pain and enjoyed his life as fully as he could - which was a lot! - almost until the day he died. If you would like to talk more, please message me. My warmest wishes to you xx

Hi Daisy,

Thanks for your response. I'm so sorry for the loss of your Stephen. I'm glad he lived well after chemo and was comfortable. 

It's nice - if that's the word - to hear from people in a similar position. It does help so thank you. I'll add you as a friend if that's OK.

I hope you are coping OK. It's still very raw for you. Take care x

Julie  

At the end of March my partner was diagnosed with an incurable aggressive bone cancer with no treatment available except morphine to control pain. As the months have passed he’s become so frail and altered and is now very confused. I feel like I’ve lost him already and feel overwhelmed with grief and despair at the thought of a future without him. It’s hard to struggle on day to day. How did you find the strength to cope?

I wish I knew how to reply. There were so many moments when I said to myself ‘I can‘t do this anymore’ or even, ‘I just want this to end’. And now that it has ended and I don’t have to do it anymore, I can see that I ‘coped’ without realizing it. I even feel a little bit proud of myself because I know that Stephen got the death he wanted and that was mainly down to me. The palliative care team were superb with understanding his pain management/medication and we were both clear about what treatments or interventions he would accept.

Please get in touch if there’s anything you would like to ask, or even just to vent. I know I did sometimes to other people on here, and it did help. xx

Over Christmas 2020 my wife was diagnosed with multiple myeloma and stage 4 chronic kidney disease.  She was in hospital initially for 3 monthszand because of COVID I was not there for her. I received her devastating diagnosis over the phone and couldn't even hold her hand.  After she came home I discovered that under dialysis her heart stopped 3 times.

Ever since I have had to be there to care for her every day and have retired early to do this.

I am grieving because the life we had has gone and I am watching her slowly disappear in front of me.  Her chemotherapy caused a massive stroke. She now has very little vision, no memory, poor cognition and has become very confused.  We cannot have conversations any more because everything turns into 4 thoughts she has constantly: What day is it? What times the news on TV? Is it hospice day? Is Coronation Street on tonight?

She has closed vision so reads all day and goes through her 4 questions on repeat whenever she sees me.  I feel like screaming so often but hold it back because she can't help it.

She has poor mobility so if we go anywhere it's in a wheelchair.  Trips out are to the hospital or hospice, nowhere else. We don't have visitors because she can't cope with this so I see no one.

I often think about what life was like before all this started and what the future could have been. I resent what life has become and that makes me feel guilty because she hasn't chosen this.

I am constantly tired, stressed and irritable.  I find myself losing my temper and leaving the room to avoid showing this.  I want it to end, but I know what this will mean and don't want this.

Life is hard!

I write this to show you are not alone.  I know what you are going through and completely understand how you feel.  Stay strong and don't be afraid to ask for help from wherever you can get it.  My help is from our local hospice: my wife attends several mornings a week which gives me a couple of hours break plus they support me as needed.   My closest Maggie's is over an hour away so took far to go with all the care I have to provide so the hospice is a lifesaver.

Thank you for replying. So sorry to hear about your wife’s suffering. So much of what you express is exactly how I’m feeling, grief, sadness, resentment, uncomprehending, exhausted and irritable all the time. I can’t bear to think about the past as it makes me weep to remember how precious our life was and I daren’t think about the empty days ahead. I get so upset when I look at the clothes he’ll never wear, the bicycle he won’t ride again. It sometimes overwhelms me. My partner John has started to repeat himself too and most of what he says makes no sense. He’s still in a lot of pain despite the morphine. It’s breaking my heart to see him like this. Maggie’s is too far for me to get to. It just helps a bit to be able to let it out here as no-one else really understands.

Hi, 

That sounds incredibly tough. I can relate to many things you say, though my husbands is clearly a lot more mobile than your wife. You are doing a brilliant job so please hold on to that. Do you have anyone you can talk to just to let off steam? We are both seeing a counsellor from a local cancer charity. It's good to talk to someone not involved. 

Take care,

Julie  

Hi,

I'm sorry to hear what you are going through. Things are certainly more advanced in your situation - we aren't there yet and I hope we aren't for sometime. I feel the same - overwhelmed with the grief. He's still here but I'm already grieving. I wish I could live more in the moment, I do sometimes but other times I'm just focusing on the future I face without him. Are you both able to get out or is he too confused and frail for that? 

Kind regards and hugs,

Julie