Husband on palliative care

Hi all

sorry I didn’t respond to your lovely messages. I’ve been going through hell as one week after he left hospital he passed away.

from leaving hospital on Easter Sunday with a prognosis of three months and caring for him for only two days at home, with the help of community nurses, I had a phonecall at midnight on the Tuesday to say his potassium levels from the morning blood test were dangerously high and to ring an ambulance… no ambulances for 15 hours so I had to call my 80yr old parents so they could look after my children and get him to hospital myself.

that night we were told in a&e that the three month prognosis was now only days and we spent the next two days organising transfer from the hospital to a hospice. 

we got him transferred on the Thursday and he passed on the Sunday morning.

i am heartbroken. The decline in my darling husband was so rapid in that week. The hospice were wonderful, we could visit any time of the day or night. They not only treated him with such dignity and care, they also cared about me and the children. 
they let me stay overnight and organised a snuggle bed so that we could all lie together and I’m so glad his death was peaceful and I was able to be with him.

i am now 9 days post this and struggling to come to terms with loosing him. I can’t imagine a future without him and my world feels shattered.

im having to plan his funeral, deal with finances and his work and also support my darling boys.

i wish everyone of you caring for someone all my love. This truly is the hardest part of being the one left behind xxx

So sorry to read your story. I understand some of what you're going through. My 35 year old husband is also on palliative chemo. But we didn't have chance to have children. We were engaged when his diagnosis of bile duct cancer came in October 2022. So we had a quick registry office wedding before his surgery. We then re did our wedding with family and friends the day before our 1st Anniversary.

We were told in February that his cancer has spread to both his lungs, its inoperable and they don't know how long he'll have. They don't have any data for metastatic bile duct cancer in someone so young. I am heart broken.

I can't imagine how hard it was for you to tell your children.

I am trying to look for other spouses going through similar things so that I can both receive support and give it where I can. Feel free to reach out.

Hi Feelingoverwhelmed,

My deepest condolences to you and your family, I'm so sorry to hear about your loss. My dad passed away a fortnight ago, similar to your story, bowel cancer that spread to the liver, lungs, stomach, and kidney and his potassium levels were dangerously high, he was in hospital for 4 weeks and hospice for 1 week. 

It's heartbreaking to see our loved ones suffer and their bodies shut down. It feels unreal that they're gone. I feel like this is all a bad dream.

My mum couldn't cope with sorting out the paperwork. I had to get my dad's death certificate, it felt so surreal. I was queuing up for a death certificate whilst other people were queuing up for a birth certificate. I broke down, a nice lady tried to console me and mentioned the phrase "the circle of life". It reminded me of the Lion King. I know this is childish, I went home and watched that movie, then I watched another Disney film called Coco I know it's childish of me, an adult watching cartoons about life and death. I cried my eyes out, I did find those 2 films quite therapeutic to watch.

I went on a meditation retreat over the weekend. Surprisingly I met 2 other people who had recently lost good friends to cancer. I had a colleague in her mid-30s who died from cancer in January. It's so awful, cancer is a dreadful disease. Talking to other people has helped me to feel less alone, it doesn't heal the pain. We all deal with grief in different ways. I'm dealing with it by reminding myself that my dad created me, he lives on in me and my memories. I'm going to spend more quality time with my siblings cos we are part of him (my relationship with my siblings isn't too good). I tell myself that my dad wants me to be happy. I'm not trying to be strong, I am all over the place, I will suddenly start crying cos I really miss my dad. My grief comes in waves. 

I don't have any wise advice to give or any comforting words to say cos I'm still going through the grieving process myself. Take care of yourself, sending you strength and a big virtual hug. 

And for those who are going through the emotional roller-coaster of looking after a loved one with cancer. I know how it feels, the fear and anxiety, the anticipation of the worst case scenario, seeing our loved ones decline. All I can say is look after yourself, you will somehow find the strength to get through this. This last month has been harrowing, I dunno how I got through it. It was emotionally exhausting, it was like I was having an out of body experience, it wasn't happening to me. It was heartbreaking to watch my dad deteriorate, he was in so much pain. When he passed away, there was a sense of relief, he was not suffering anymore. The fear and anxiety instantly evaporated but then a feeling of loss and emptiness kicks in. It's a different kind of difficult emotion to deal with. 

Take care, everyone, whatever stage of the journey your loved one is on. If talking helps, call the helplines, Macmillan, Marie Curie, various bereavement helplines or whatever support you need. Or post on here, and let your emotions out. You are not alone. 

I’m so sorry that you’re going through this too. It’s so hard being strong all the time and quite frankly you won’t be. We are only human. I tried so hard not to show my husband how scared I was about loosing him and I thought him seeing me cry would show him I was accepting that he wouldn’t be around for long, but those tears would come anyway.

if I was to give you any advice for the future it would be to make sure you know what he wants near the end. My husband didn’t want to die at home as he didn’t want it to make our home feel like a sad place for our boys. He wanted to be in a hospice and we nearly didn’t make it there as the hospital said he was too poorly to move, so listen to his wishes and it will bring you comfort after.

i sincerely wish you have lots more time together to make memories and enjoy each other.

am here for when you need to talk, please stay in contact x

Thank you for your reply. Your words are so similar to my experience and I’m so sorry for the loss of your dad.

it sounds like you’ve been doing him so proud helping your mum out with everything. 
I totally get all the emotions you talk about. I absolutely feel like I’m having an out of body experience and it’s a bad dream.

i had to speak with the funeral celebrant to today and I couldn’t quite believe I was talking about my husband. How can he be dead? How can my boys not have their dad? Why us?

my youngest said tonight, does that mean you’re not married anymore to daddy and I had to say that legally no I’m not but he’ll always be my husband and my soulmate and that officially I’m now a widow at 49, and it totally broke my heart to even say the words.

Each day is so emotionally exhausting. There isn’t time to breath let alone grieve as I’m just bombarded with funeral planning, admin and still trying to get the hospital bed and oxygen tanks removed from our home.

i just want him back so badly xxx

It's so sad to read what you're going through, it makes it more difficult because you have children. All these tough conversations and you have to look after your boys as well.

I can relate to how you feel, I went to the funeral directors and the banks. I don't believe I'm talking about my dad as if he is dead, then I have to remind myself that yes he's really not here anymore. He was cremated yesterday, that feels unreal too. I'm living in a bit of a bubble at the moment, trying to come to terms with it. The 5 stages of grief, denial, anger, bargaining, depression and acceptance. It's not linear and different people deal with it differently. I'm hovering between denial and acceptance, plus sadness at the moment.

Once you've sorted out the funeral and admin it'll hopefully give you more time to breath. I felt a bit like that, adrenaline rushing, restless and then I completely crashed.

I've had 6 or 7 weeks off work, I'm back at work today, back to reality without my dad. I had a good old cry seeing emails from March, when my dad was still alive. Bereavement is personal, I've heard people say that you don't get over it, you just find strategies to cope. 

There's a bereaved spouse and partner forum on this website, you might get more replies if you post in there. Let me know if you do start a thread there and I'll try to reply, it's not a forum I hang out in.

At the moment, all we can do is to take it a step at a time. Let the emotions flow, we are only human. From my personal experience, the first week was unbearable, the second week got a tiny weeny bit better, I'm now onto my third week and it's a bit better than the second week. I stay break down and cry though, especially when something reminds me of my dad. I was crying over apple juice yesterday cos he likes to drink it. I hope your boys find a way to cope or release their emotions, I know it's not quite trendy for teenage boys to cry. Or maybe they are naturally resilient and can handle things in their own way? My younger brother is like that, taking things at his stride and he's emotionally stronger than me and had to cheer me up. 

I hope you're ok. Just post on here if you need to chat. Take care x

Ps. There's free bereavement counselling and online bereavement support groups if you need it. I did look into it but after talking to 2 people on my weekend meditation retreat who lost good friends, it helped me to get a bit of the grief out of my system. 

I am so, so sorry to read of your 'too soon' loss. I lost my Dad, Father in Law & best friend to cancer in the last few years, I nursed them all (ex nurse) & at the time could never have imagined that I would now be facing the same journey with my husband. This is a totally different experience to anything before & I empathise with your pain, I have no words of any value to you right now but you & your family are in my thoughts as you face this awful time.