Kidney failure

I thought I would give an update , 

gary returned home on Halloween and we set up the living room for him to have his bed so he can watch telly , thank god for the World Cup !

the first few weeks he was great , eating loads and generally alert , he has been reducing his steroids and the. We think he had a urine infection , the GP prescribed antibiotics but he had a fever.  Urine that smelt of antiseptic and one day he slept for nearly 20 hours .he has recovers well .

the Pallative care nurse gave him a week s course of steroids 4mg a day to help with appetite , it did increase but didn’t do much for his energy levels . Apart from one morning he work up and wanted to go to the barbers to get his hair cut ! We did go and he looked a lot better afterwards .! The small things !

the last week he has had night delirium , it started with “where am I” and them got worse with “someone kept putting me back to bed and why have you got all these people coming to the house . “ It never last long and he almost laugh when he’s said it , but it’s creeping into the day now , I’m guessing as he is sleeping so much . We have had a lot of visits , friends cousins and other family to see him . I’ve put a single mattress in the living room with him and it helps as I’m a pretty light sleeper and even if I just answer him he’s ok with that . 
the nurse said it could be progression of the disease or just an build up of all the day’s activities and trying to make sense of it all . 

He remains pain free just on 10mg of slow release morphine tablets twice a day , he’s topped up on liquid morphine about 5 times in 5 weeks 1.5 mg

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I know the end is fairly near now , and I pray it will be gentle for him . My heart breaks for my 4 year old daughter , she said to him yesterday , I wish you could come back and be normal but if you die and go to heaven that’s ok . I will still love you . 

It's heartbreaking news we all fear wish you all the best at a sad time xx gaz

I’m so so sorry to hear your sad news, such a difficult time for you, it highlights again how nasty and cruel this disease is. 

You are in my thoughts xx

Last Tuesday the worst thing happened and what I had dreaded ,Gary fell out of bed or tried to get up out of bed and fell.

I have been sleeping on a mattress in the living room and my daughter had woken up at 2am so I was trying to settle her upstairs and I heard a shout … I came down to Gary wedged in between the wall and the bed on the floor .my first thought was “are you in pain “ he replied no . I quickly gathered he hadn’t broken anything .he didn’t have the strength to get up on his knees but I managed to pull the mattress over and he rolled onto it . 3 hour wait for an ambulance and they managed to get him back into bed at around 5.30 am check him over ,he did have a temp of 39.6 so they asked the rapid response to call the next day .I was up by 7 am daughter to school and waited for a lovely man who took Gary’s blood and found out he had a dangerously low red blood count … nurses said if it comes back under 70 you will need a transfusion , Gary’s was 53 ! Within 3 hours he was in an ambulance to the hospice ( nurse tried hospital or hospice which ever quicker ) I don’t think Gary could have faced a day unit so when a certain hospice in north west London came available he arrived and within 30 mins ,blood taken , dinner served and doctor around and into bed … .he had 2 transfusions last Friday

I can’t quite believe how wonderful the hospice is and for anyone reading this please go and see one ,i feared them to much it was almost admitting defeat going to one but I needed to get my head out of the sand ….. I only wish Gary had gone there in August to sort out his pain management instead of popping ibuprofen like sweets .

He also had low sodium , but that has come up as well as his red blood count ,for how long we don’t know . He still remains pretty tired but I went Sunday and he managed so stay awake for 3.5 hours .and today for 3 hours .

He is suffering with confusion manly at nightime and in the morning , previous scan from October showed the cancer had spread to the dura and doctors think this is causing the confusion , he can be talking normally and then talk about his trip to the gym or standing on chairs ,very convincingly.the doctor did say , you do know that you have been in bed the whole time and he will reply ,well it happened before you came in to see me .

I’m not sure what the future hold with him returning home , as this confusion is worrying .I’ll take it day by day . They do give him haloperidol in the evening to help him sleep and calm him which does help

So sad to read your updates Fiona. It’s been such a difficult time and don’t know how you’re doing it all.

I’m really pleased to hear that you now have some help and support with Gary in the hospice and that they have been so good with him.

You’re doing amazing, keep getting all the support you can. Really hope Gary can remain comfortable and without pain.

Sending our love & best wishes x

Fiona so sorry to hear of your loss  please accept my sincere condolences. Take care of yourself and your daughter.

Thanks Chris