This is a looong post. Nigel is still here.
Instead of updating regularly, I started to keep a sort of diary. I stopped uploading as I was too depressed to properly acknowledge the love and support you all give, I think I’d begun to sound resentful and bitter. I don’t like to comment on new stage 4 posters as when they look at Nigel’s profile there is very little to offer hope and positivity and his membership of this special group has been fraught for some time. I have had a lot of support to help me get through the last few weeks and although I’m still sad I no longer feel in the depths of depression. What follows is the diary I have been keeping up until today.
After Boxing Day, Nigel became too fatigued to eat or get up to use the bathroom. He mostly just slept. He had a blood test on the 27th December which showed that his sodium had reached normal levels but his kidneys were failing. He was able to drink as he pleased but was too tired to make the most of it and by 30th December was taking very little fluid in. Nigel was sick twice on the 30th and the District nurses came out to him both times, the first time they gave him an anti-emetic and the second time they did observations and found his blood pressure to be something like 75/56, extremely low and an indicator of sepsis. The paramedics were called and it took nearly 2 hours to get Nigel downstairs and into the ambulance as his blood pressure kept falling every time they tried to move him, our stairs were too narrow for a stretcher so they had to get him into a chair to carry him down.
We got to A&E at around 4 on Monday morning and he was treated as if he had sepsis while they waited for blood results. He had a Ct scan and was given antibiotics and saline fluid. Nigel had a uti and this had developed into urosepsis. Monday afternoon I asked my mum and brother to bring our children to the hospital to see their dad. It was heart breaking but I’m glad I did as they had a long time to sit with him while he slept. Nigel had stage 3 aki and pancreatitis on top of the urosepsis.
I stayed at the hospital Monday night, he was given antibiotics and fluids in an attempt to reduce his temperature and rehydrate him. Tuesday he mostly slept and tried to sip fluids but struggled. Tuesday night he was very disturbed and slept very little. Wednesday his temperature and heart rate were better than previously but still not normal. Because of the holidays we hadn’t seen a consultant, Wednesday they came to say the ct showed pancreatitis and possible kidney obstruction and that it would be reviewed by the surgical and urology teams to see if there was anything that could be done to alleviate the suffering. They booked Nigel for an ultrasound of his pancreas and kidneys.
The Palliative care team came and went through what had been discussed and the possible outcomes, such as there being no further treatment and potentially being moved to the hospice.
While I went home to grab a couple of hours sleep the surgical team arrived to discuss stents and nephrostomy. Nigel hadn’t got a clue what they were talking about and my mum and sister in law did their best to take note of what has been said. It’s very frustrating that they came before the ultrasound has been done, this option may not have been given after review. Wednesday night was peaceful, I stayed at the hospital each night, they have brought me a mattress to sleep on in his room.
Thursday morning urology team came to discuss surgery, same consultant as when he had the turp. Agreed that the risks outweighed the benefits and to leave Nigel with the urinary catheter instead. Nigel was very sleepy but the most “with it” he’d been since the weekend. Medical team decided not to do the ultrasound as it wouldn’t make a difference to treatment. Palliative care nurse came back and confirmed our request to be moved to the hospice. Nigel was having iv fluid and antibiotics in hospital but there wouldn’t be iv at the hospice. All medications and antibiotics are to be given as a liquid or injectable as Nigel is having great difficulty in swallowing. He slept almost all of Thursday afternoon and evening.
Moved to the hospice Friday morning, Nigel showed an improvement overnight in hospital and started drinking again. Friday morning had a cup of tea and biscuits for breakfast then managed to brush his teeth and put his false ones in as well. This makes a big difference to how clear his speech is and his swallow reflex. Settled in well to the hospice and met his doctor and nurse, the aim is to alleviate as many symptoms as they can for Nigel, catheter leakage/bypassing, pain when opening his bowels, acid reflux pain when eating, thrush in his mouth from the antibiotics and the slight delirium that has appeared. It was clear by lunchtime that the initial buoyancy of the day (probably steroid induced) was waning and that Nigel was exhausted.
We can almost see our house from the hospice it’s that close, I feel fortunate that we have this facility so close and that there was a bed available when we needed it. I have to say the respect and compassion shown on the hospital ward was amazing too, they really cared for him and me and our family and friends.
Saturday 5th January Nigel couldn’t eat or drink and mostly just slept. He was given sedation a couple of times and his anxiety coincided with the need to open his bowels, he wanted to get off the bed to go to the toilet. I held his hand when I could and he managed a hello to both children. They were sad but like me, don’t want to see Nigel in any more pain and are glad he as sedated. Lots of family through the doors and some beautiful friends came home with me to help take the Christmas decorations down. I cleared out our bathrooms which are full of catheter and incontinence necessities and I moved the medical stuff out of our bedroom. I couldn’t bear to keep looking at it all knowing he wasn’t coming home. I can take it to the hospice and they will use it for Nigel there.
Letter in the post from onco suggesting a ct scan is necessary and that the recent issues may be due to fluid restriction. I felt a wave of anger and hatred when I opened it, too little too late. I emailed onco over 4 weeks ago to get some updates and ask for a scan. It turns out the Secretary was off sick, no one dealt with the emails and I was too busy looking after us all to keep chasing, sometimes the energy can’t be directed into following up phone calls and emails. There’s no way Nigel is going to make this month’s clinic let alone go for a scan. But 4 weeks ago it may have helped predict what was going to happen, who knows.
Sunday 6th January
Nigel was buoyant in the morning and although sometimes difficult to follow, chatted to visitors and had plenty to drink. By lunchtime this had worn off and he began to experience all over body pain, he hadn’t taken the Abiraterone since last Friday so perhaps that had an effect on the bone metastases. The nurses gave him liquid oxycodone, no oramorph as this affects the kidneys. He settled for several hours and woke up early evening to chat with me before I left for home. He started to asking to come home, although this was not his plan, and I think it will be very hard on the children to see him like that all the time, if he insists I said I would arrange for his end of life care to be moved to the home.
Monday 7th January
There are ups and downs every day, the mornings are probably the best part of the day, Nigel was chatty and relatively alert, the kids came for breakfast and told him about their day ahead or what they did the evening before., they showed him pictures of things they’d like for their 16th and 18th birthdays this year and after they’d left for school he asked me to buy them now and put them away. Nigel managed to drink lots of lemonade and diet coke and was well hydrated but still struggling to eat The doctor thought he may have a very bad case of thrush in his gullet and gave him treatment for it. Long periods of sleep interspersed with chatty good humour. A good day for the kids to see him. The nurse prepared a Compact Coffee flavour Ensure for him, a scoop of ice cream, some milk, some crushed ice and blended. A very nice frappe which he managed to drink.
Tuesday 8th January
Nigel slept well but struggled to wake up, only really becoming alert around lunch time, Doctor felt a change from Haliperidol (anti-nausea ) to metoclopromide might help with the drowsiness, so changed to this in the evening. A quiet day, I gave Nigel as shave and helped give him a wash, he talked to the Doctor about maybe getting out of bed on Wednesday and into his wheelchair. Very poor appetite but managing a chocolate milkshake and another frappe. I rang motability to inquire as to whether we can purchase the car mid-lease, we can. I have to notify the DWP that Nigel is in a hospice as if he is admitted for 28 days the PIP stops and this is what funds the car. These are the shitti est things to deal with when this situation arises. Good urine output, nurse feels that kidney function may have improved/recovered.
Wednesday 9th January
A fairly rubbish start to the day, Nigel woke up at 7 and bypassed his catheter, by the time the nurses had changed him and his bed he was exhausted and went back to sleep until 11am. Then family visited with a 1 year old and he woke right up, he then had a stream of visitors until 5pm, he was really with it and chatty. The kids came up and they decided they would come for longer on Friday. Nigel is still drinking but can’t eat, he finds food attractive but once it’s in his mouth he doesn’t like it and spits it out. I have asked the doctor if there is any tweaking to be done with the meds to improve this. They will discuss for tomorrow. A nice day for everyone. Social worker dropped by to talk to me and a different one to talk to daughter. Son has had a meeting with his but neither child.inclined to talk at the moment. Nigel is scared, I asked if a social worker could drop by to talk to him and help him share these anxieties as he wants to but stops himself because he’s upset and doesn’t want me to be upset.
Thursday 10th January
Same scenario, Nigel was awake early and with it for an hour before he went back to sleep and could not bring himself around to chat. Visitors arrived around 11.30 and he woke and chatted for a long time. Drinking ok but no appetite, Nigel started asking about coming home. He said to the visitors that he was going to build himself up and come home in the next few weeks. I didn’t know what to say, I wasn’t sure if he was trying to convince himself or if he was convinced he will recover some of his health from this episode. If I’m totally honest, I was afraid to have him home as his needs are more than I could manage on my own and that would mean relying on nurses to come to the home, they wouldn’t be there all the time and it’s sods law that you need them when they aren’t readily available. He seemed fitter than when we arrived at the hospice, he had enough strength to turn himself over in bed and to pull himself up the bed with the hoist. He hadn’t been able to do this at all until now. I went home for a shower and open the post. My mum sat with him but he slept. A relatively alert afternoon and evening, no food but drinking ok. Catheter pain, an ache that goes away with the Instillagel so probably down to it being a size 16 rather than anything else. Went to sleep talking about how tomorrow he was going to get out of bed and into the chair (very comfy recliner, I’m sleeping on it at night.) Positive thinking. He said he was going to ask the doctors what happens next, I don’t think he understands that he is still deteriorating, they’ve made him feel better but not being able to eat anything is not a good sign.
Friday 11th January
Nigel is a very determined man, he decided at 9am he was going to get in the chair and he did, with the assistance of 2 nurses. The kids brought Macdonalds breakfast at 10am and I made Nigel a sausage sandwich, he ate half a sausage and drank 2 cups of coffee. We were all a bit surprised at this. He sat in the chair for an hour and then went back to bed. He managed to try the fish and chip lunch they provided, a couple of mouthfuls. He chatted with visitors in the afternoon and then ate the middle bit of a portion of arctic roll for his tea. He had another coffee and went to sleep around 9pm. I don’t know if this is just a little hiatus or if there is an improvement in his kidney function and general well being. Nigel said he might ask them to check next week. He has been telling visitors that he should be home in a few weeks and is intent on getting into the wheelchair tomorrow for a tour of the hospice.
Saturday 12th January
A long night in which Nigel had trouble with his bowels opening without control, twice in the night, then on waking. He managed to get up and into the chair for half an hour, then he went back to bed for a while. Then his bowels opened again, after the nurse had changed him he asked to get in the wheelchair, I took him on a little tour of the hospice. We went to the kitchen and made a coffee, I can’t quite believe the improvement and neither could the doctor when she saw him being wheeled back to bed. They are going to review him on Monday as he seems to be improving rather than deteriorating. Appetite is still a major issue but drinking plenty. I am prepared for this not lasting but it feels good to have some happier memories.