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Tomorrow is 9 weeks since my husband suddenly died on 16 August. Can’t believe I’m writing these words.
So my husband lived with crohns & ulcerative colitis for 19 years and had annual colonoscopy’s to stay on top of everything. Had been following his specialists advice and drug treatments for a long time to make his life kind of manageable. He still worked full time as was I. Had our two daughters (one is 19 and one is 15 years old). Were living our lives. On 26 July 2022, colonoscopy found bowel cancer. After various more tests and scans, appointments etc discovered it had spread to his liver. For a little while there, doctors were worried it had spread to this throat but no it hadn’t (stupidly we were both so relieved)! Specialists fast tracked chemo treatment which started on 10 August. My husband planned to do whatever treatment would be needed – he planned to live. The following Tuesday 16 August, after his abdomen kept becoming more painful, his specialist advised they would admit him into the private hospital at 11am and they would be helping with his pain management. On our drive to the hospital (a 20 minute drive), my husband turns to me and tells me his tongue is swollen and could barely talk. Internally, I’m really concerned, outwardly, I’m saying to my husband it’s okay we’ll be at the hospital shortly and they will get on top of it. We arrive at the hospital, I get the wheelchair, collect my husband from the car and wheel him into reception. I then tell the reception nurse about the swollen tongue and not able to talk and that he’s in a lot of pain. Suddenly about 12 medical staff descend. I can also see that my husband is struggling with low blood pressure – he never has an issue with blood pressure. Over the course of 30 minutes of assessing him in the reception area, they then decide to take him up to the ICU and run more tests to see what is going on with his abdomen. I’m worried but thinking okay that seems reasonable, I want them to really help with his pain management so he’s not in much pain at all and is comfortable.
I get up to the ICU and for the next 2 hours, my husband gets taken for a CT Scan and they do a number of other tests. In between doctors tell me they think its a bowel blockage most likely and when they finalise the tests they will aim to take him into surgery to remove the obstruction – sounds reasonable and they have a plan. They also tell me they have given him something for the pain. Everytime I get into his ICU room, he tells me and the doctors he has this pain in his back. He thinks when they transferred him from the wheelchair to the bed, they pulled something in his back. I keep going in and out of his room, because the doctors and nurses are still doing medical stuff – injecting drugs and checking what is happening. The last time I went to check on him, I didn’t go into his room – the doctors were busy injecting drugs and treating him. I went back to the waiting room.
In between this I messaged my daughter (19 year old) to come to hospital so we could give him some moral support as he was having a really hard day. My daughter gets to hospital around 12.30pm but because he’s been in and out of his room and only 1 person can visit at a time (and his room was behind the secure ICU doors) I ended up just going back and forth between his room and the waiting room. A bit after 1pm two doctors come to see us to say, its not a bowel blockage, he has two perforations in his bowel and at the moment, they need to stabilise him before they perform any operation. Once he is stabilised, they will take him into surgery. Still thinking, okay this seems reasonable.
Then at 1.30pm we hear this announcement over the PA system saying code blue code blue ICU 4 (so ICU 4 is my husbands room) – I say this to my daughter and run towards the nurses desk where I can see about 20 nurses have congregated and I can see behind the secure ICU doors there are another 10 medical staff rushing towards my husbands room. I’m crying at the nurse nearest the secure doors to say let me through that’s my husband in ICU 4. They walk me back to the waiting room, I tell my daughter what I saw and we both start praying and asking for a miracle.
Eventually, maybe it was 40 minutes later, the two ICU doctors and a nurse come to the waiting room. They explain to us that at 1.30pm my husband went into cardiac arrest, he was oxygen deprived for up to 5 minutes so they don’t know to what extent he has brain damage, he is on a ventilator and that they are still doing tests. They say he is too unstable to perform the operation on his bowel perforations. I’m still stuck on the cardiac arrest and oxygen deprived part of the conversation. A million thoughts are racing through my head. The doctors head back to him. One of the ICU doctors and his oncologist and a nurse then come back another 30 minutes later to tell us that there is no hope. We will need to switch life support off. The logical part of my brain, says out loud – so how long will it take for him to die? They reply minutes. I then say, you can’t do anything until my/our other daughter gets to the hospital. They leave the room to us. My daughter and I just hold each other and I say I will have to call my brother to get my younger daughter to the hospital.
So then I call my brother and tell him my husband is dying (and what has happened) but before he dies, I need him to bring my younger daughter to the hospital but he can’t tell her what’s happened (I have that responsibility). My younger daughter gets to the hospital sometime before 3pm. I fumble my way through telling her what has happened to her dad at the hospital today and then the ICU doctors come in and also explain what has happened. I tell my younger daughter (who also has anxiety) that she has a choice, she can see her dad and be with him right at the end or stay with her uncle and aunt (in the waiting room) – both options are okay. She decides to stay put – she could not face seeing him in this state. I just needed to make sure she had the choice and that she was at the hospital.
So then from 4.30pm til about 4.45pm my husband slipped away. We (my older daughter and I) held him, told him over and over again that we loved him. I told him to let go of his pain and we would be okay. It felt like an out of body experience. Everything was and is surreal about that day. Then we were ushered out of his room so they could do the final tests and pronounce time of death at 4.55pm. We didn’t get to go back in to see him. I didn’t get to talk to him properly in hospital that day before everything happened. I didn’t get to kiss him and tell him I loved him so much when he could hear it.
Then after about another 45 minutes we had to go drive to his parents and break the news to them (they are in their 80’s). Then break the news to his siblings over the phone as they live interstate.
While he had bowel cancer, he had barely started his chemo treatment. His death was sudden. Unexpected that day. Turns out he had gotten sepsis. Most likely he already had it when we were driving into the hospital that morning. I thought we would get through the 6 weeks of chemo, have more tests and see where everything was at.
We are stuck. This mountain of grief. It’s all consuming. Worried out of my mind for my girls, but my younger daughter especially so. The grief constantly takes my breath away – have to keep reminding myself to breathe. I get up to feed our dog and my younger daughter who lives with me. I am doing the stuff that needs to happen. Everything is an effort. Nothing is straightforward. Then there is all the other stuff, death admin paperwork. Then there is my work which pretends to confuse sympathy with empathy and support and so now I find myself on leave (without pay) as well. Then there is – so what do I do now? There is only before when he was with us and now the after – he is not with us. This world feels so much more greyer and emptier. Feel like I have lost hope. The whole world is just continuing but we are so stuck.
I’ve read a few posts – feeling everyone’s pain and loss.. Sending love
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