Bad day

Today is a really bad day. Feel on the edge of crying constantly and keep obsessing about the funeral and imagining what it will be like. I think I just want it to be over with now.

I actually just went to the car park at work, lay down on the back seat of my car and lay crying for a while, it made me feel a bit better but I would have been so embarrassed if anyone had walked past.

I keep reading the texts that he sent me and looking at pictures of him, I don’t know if that’s a bad thing to do, it seems to upset me more sometimes but I just want to see them and remember.

I keep remembering key things that he said to me, like when he said when we were sat in his lounge once “I don’t want to die”.

I hate this all so much, I am so so sad, I miss him so much and really really want to see him again and speak to him again.

I never thought id feel this way but I am also desperate for a sign from him to know that he’s there or that he’s watching me. Affy’s girlfriend Alison told me that when her husband died she used to see signs all the time that he was still there. She said they came particularly in the form of electricity things like lights would turn off when she came into the room, or streetlights would flicker when she walked past. I want something like that but haven’t had anything. I know its desperate but I just think that it would maybe make me feel better.

I also have constant worried about everyone else. I feel like I’m just waiting for the next thing to go wrong with someone else. Nana keeps having pain in her legs at the moment, she’s just been to the doctor and found out that it’s probably the result of hardening in her arteries. I feel really worried about that now and that it might lead to a stroke or heart attack. I definitely couldn’t cope if this happened.  

My head is so so full at the moment, just want to stop thinking, the only time the thinking stops is when I’m asleep and even then I dream all night. I hope this starts to get better soon. I am acting just like normal with everyone but it’s so exhausting, I don’t really care about the same things any more. Well sometimes I do care about them but at other times I just feel like I’ve realised that nothing else really matters apart from Mum, Natalie, Warren and Nana being ok.

It's been exactly two weeks now

It’s been exactly two weeks now since he died and it’s been awful. Well not awful, up and down really, and I definitely don’t think it’s sunk in yet. I think about him absolutely all of the time, occasionally I realise I haven’t been thinking about him for a little while, but those little whiles never last longer than a few minutes. It’s the funeral next week, and I am dreading it so much. If I’m honest, when I do cry or get upset it’s generally because I’ve been thinking about or imagining the funeral and how awful it will be.  I keep imagining macabre things like the sight of the coffin being moved backwards.

It hasn’t really sunk in I don’t think, I can’t quite fathom that I will never see or speak to him again.

 The things that upset me the most, or that I think about the most are the facts that I am so scared of forgetting the sound of his voice, or his manner and the little funny mannerisms that he had, I wish so much that I had videos of him speaking so that I could watch them. We do have old videos of him, but I want just very plain ones of the way he spoke and the little things that he said ordinarily. I’m so upset that if I get married or have children that he won’t be there. I feel upset for Natalie that she didn’t have more time with him.

Most of all I feel upset for him at how disappointed he’d be to know he hadn’t managed to fight the cancer, as he was so proud of how strong he was and was so confident that he’d be ok. He would be so upset to think he’d failed.

I just really really want him back.

I think it's the end.

He woke up this morning different and I felt like I knew.

He was rattly and couldn't clear his secretions. He was agitated and trying to get out of bed and roll to the side. His breathing changed. It was noisy and he wasn't using his stomach as much anymore to breathe. 

The nurse hadn't been able to find his vein last night so decided to give him his fluids via a sub cut needle instead. 

She came and told us she thought he was shutting down. 

We went to the day room while they suctioned him and changed his bedding. She came to us and spoke with me. Neda didn't talk she was sat in shock. She cried as I spoke to her and told me she'd lost her parents and had only become a nurse because they'd asked her to. She'd nursed them in Fiji and then after they'd died she'd come to England. She was lovely with us. 

Neda was angry and felt they could have done more. 

The nurse said she thought it was imminent. 

I said I was going to my uncles funeral today and didn't know what to do. She said she thought I should maybe stay with him. 

When we went back into the room he'd been sedated and his bedding was clean and his breathing sounded better. 

Just a waiting game now. 

Mixture of emotions today.

The doctor came in the morning and hinted that treatment may stop tomorrow. They X-rayed his chest and did a blood test. The infection level had come down to 63 (from 177 on Friday) but the X-ray was very bad. It all looked grey. I spoke with the doctor briefly in the afternoon and asked if we could speak to them in the morning as it was uncle Alex's funeral in the afternoon. She said that was fine and we could meet at 9.30. I cried as I spoke to her and she was lovely back. She said she was so so sorry there was nothing more they could do. She said he's a very ill man. 

Dad came round for a bit in the afternoon and was talking to me for quite a bit.

Tina came and he had a lovely moment with her telling her how much she's gone through and how strong she was and what a lovely woman she is. He was saying god bless you to her and clasping her hand. 

Afterwards he was asking me how long it will take before he gets better. I was saying that I didn't know but reassuring him that he has lots of medication to help him relax and stop him being in pain. 

He was saying to the nurse that he hadn't gone insane or lost his mind. 

He told me he'd been through 24 hours of hell. 

He was paranoid about me conning him about his medicine. Thinking I wasnt letting him have it or was making him wait too long for it. I made him look at me and promised him I was being honest with him about it. After that he took my hand and then Cuddled me and kissed me and told me how much he loved me. 

He was asking the nurse how long he'd be in hospital for, she was very diplomatic and said she wasn't sure and told him that if some of his treatment stopped he could go to a step down bed. She didn't imply that he may not move. 

He told me how much he loved me and Natalie and how proud he was of how strong I'd been despite everything I'd been through. He said he'd never have got through everything if it wasn't for me. 

I told him how proud I was of him. I showed him the screensaver picture of us on my phone and told him I was always looking at it. It seemed to make him very happy. He said it was fantastic. 

He said to the nurse that he was one of the most intelligent people she'd ever meet apart from me. 

After that he slept and slept but seemed very peaceful. 

Mixture of emotions today. Dad came round for a bit in the afternoon and was talking to me for quite a bit.

Tina came and he had a lovely moment with her telling her how much she's gone through and how strong she was and what a lovely woman she is. He was saying god bless you to her and clasping her hand. 

Afterwards he was asking me how long it will take before he gets better. I was saying that I didn't know but reassuring him that he has lots of medication to help him relax and stop him being in pain. 

He told me how much he loved me and Natalie and how proud he was of how strong I'd been despite everything I'd been through. He said he'd never have got through everything if it wasn't for me. 

He said to the nurse that he was one of the most intelligent people she'd ever meet apart from me. 

After that he slept and slept but seemed very peaceful. 

4 o'clock

I remember reading and hearing lots of times that 4 o'clock in the morning is when people are at their lowest and most likely to die.

It's five past four now and I feel sick with dread. 

He's woken up and been awake for nearly an hour. Fluctuating between confusion but mostly lucidity. 

He's now got a productive cough but can't quite cough it up so swallows it again. 

He's telling Neda to teach me farsi and telling her off not for teaching me and taking initiative. 

He started pulling his oxygen mask off a bit but seems to have settled now. 

What a horrible terrible time. I can't bear being in this room, it makes me feel sick to my stomach but I can't leave because he sometimes asks for me and I couldn't bear it if he did that and I wasn't here   

Nana sat with him for a few hours earlier so we could have a break. He said he didn't want her to come but then seemed pleased that she was there. We sat in a room down the corridor not daring to go back in. It helped so much to have some time away even though it wasn't long.  I kept popping back in to see how he was. 

I wish so much Warren was here to sit with him. He can cope with things like this better than me. I am falling apart, he is calmer and also understands this process better. If he was here u could leave him with dad and rest somewhere and still feel confident that he was ok. I know he wouldn't leave him. He is coming tomorrow but I feel that might be too late. 

 I can't believe it might all end so soon. This is heartbreaking. I don't feel like if it happens I will ever recover. 

Things got worse

Well since I last wrote things got a lot worse. He has been generally deteriorating for about a week. His oxygen was going down and he was feeling really tired. On Monday he was coughing a lot, his sats had really dropped and he was feeling really drained. I phoned the cancer centre and asked if he should come in. When they heard what his sats were they said he was too ill to come to them and we had to phone 999 so they could take him to A&E. I phoned them and then got in the car and drove back.

On the way back I had a gut feeling that he was going to die that night. 

I arrived at A&E and was relieved to see him looking better than I expected but still very ill. He had a chest X-ray which showed an infection and they changed him to far stronger IV antibiotics. 

At about 2.30 they moved him to the acute medical ward. It was horrific there. He was moved next to someone who had his whole family standing round them and looked close to death. The man was shouting and repeating things and his light was on. A horrible place to have to spend the night. By the time we left at 3.45 they still hasn't even come to check him in. We went home and got some sleep. 

When we went in in the morning he was ok. Clearly very drowsy but talking a bit and not terribly different. They sent him for a ct scan which confirmed a pulmonary embolism though thankfully only a small one, and also that the infection was pneumonia. 

By that afternoon he had started to deteriorate. His temperature was high (38.4) and his pulse was 125. They started to panic a bit and I heard the nurse saying to the doctor "shall we move him to the other side"- which I later discovered to be intensive care. The doctor said that as his BP was ok they could leave him for a while and just monitor him. His mews score was 8. 

They gave him paracetamol and a fan to bring down his temperature which started to work. His pulse remained high though. 

I went to the corridor and cried and cried then saw his nurse on the way back. I asked her whether they saw people recover when they were in a similar situation to dad. She said they did and she wasn't too worried. She said it was a typical pneumonia presentation but that his antibiotics were strong so he should start to respond to them. This relieved me so much. They then came to say he was being moved to another ward once they had a bed free. It could be any ward in the hospital depending on which ward had a free bed the soonest. 

We went home at about 11 at dads request as he wanted to try and sleep. He said he'd text once he'd moved. 

At one in the morning I got a text saying he'd moved to ward 113 then at 5 in the morning I got a text from him saying to come in as soon as I woke up. I then got a text a few minutes later saying not to rush in and just to come later. 

I arrived at 7.30 that morning and he was so upset and stressed. A doctor had been in in the night and told him that his cancer was incurable and he was dying and had stopped his fluids and antibiotics and said to call his family in.  She'd then come in not long after and apologised and said she was wrong and had spoken to a nurse and didn't realise that his sats were always that bad. She then said it didn't matter about us coming in and they'd continue with the treatment. 

We spoke about it and he was really upset about it but being very logical and mentally seemed fine. It was just me and him all morning and we had a lovely morning chatting he said some lovely things to me and said how he lived for me and Natalie and how he couldn't believe the love i'd shown him in how much I'd done for him since he's been ill. A lovely nurse called steve was looking after him and he was chatting away to him and was just normal. His breathing was normal for him and the whole morning was fine. 

I went out at just after lunchtime to go to the toilet and when I came back he was in the bathroom and he was a deathly white colour. He'd gone to the bathroom to wash himself and hadn't taken oxygen with him. He got into bed and was fighting for breath and fell asleep. 

A while later Neda came and she was so shocked to see him. I was trying to reassure her that he'd been fine and was just very tired from going to the bathroom. It soon though became clear that he wasn't improving and we called the nurse in. He checked him over and confirmed that he was getting worse. Time passed in a blur, afshin and Alison came and we found ourselves in a meeting with the doctor and nurse who explained the severity of the situation m: his lungs were trying to cope with copd, cancer, a clot and pneumonia and that each one of those things was life threatening. The doctor asked me what I thought his cancer prognosis was. I said possibly a year at best after chemo for six months. He said he couldn't see at all that he would survival the six months of chemo. We put a DNR in place and agreed to continue active treatment for now. They said they'd spoken to ICU and they wouldn't accept him as they thought his condition was incurable. 

We went back and sat with him praying that the antibiotics would work and hoping for a miracle. 

Natalie mum and nana came and though none of them saw him they sat in the dining room on the ward. At one point dad perked up and so I went and got Natalie and they were able to have a nice few minutes together and to say that they loved each other. She left then. Mum stayed at the hospital with me until 12.30 and I kept popping into her for little talks or for a walk. 

Me and Neda stayed with him all night. She pushed three chairs together to make a bed. I slept on the chair next to him and we mostly had a good night he slept for most of it and seemed mostly comfortable. Afshin stayed also until 5 in the morning and then left. He stayed in another room though.