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lurking on the fringes for 10 months


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  • jay

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Jayne, hope something not too bad is found on the ultrasound and they can fix it, so he starts to feel better really soon and you, the stress must be horrible, I really don't know how you cope. Thinking of your both and sending all my very best wishes. Fiona X

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Have put a drain in and survived the procedure, was asked four times did I want it done and did I understand the consequences,

spent night at hospital, got a rota going now, hes not in any pain now as using morphine syringe driver, pethadine buscapan, the palliative care nurse told me that sometimes people with pc cant digest the pain killers and have to be given it straight into the blood stream, no wonder hes been in agony. Consultant said in all his years at working at the hospital has never seen such a bad case of jaundice, bilirubin is over 900 !!!!

x

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Hi Jayne,

It must be truly horrendous, so glad he has made it through the procedure, you have never been far from my thoughts. Paul has been on a syringe driver twice now, and kept it for several weeks at a time. In fact I still give him diamorphine injections through a little port in his arm, because his absorption of oral drugs is so poor, something the hospice let me do. Buscopan in the syringe driver really helped when he was in lots of pain earlier on in the year, we were told that for anyone it is next to useless orally. So don't be too worried if he comes home with a syringe driver, the district nurses will come in every day and change it, and they make it a priority.

You obviously have a strong determined man there, to get through so much. Hopefully once he is rested and that bilirubin start to fall, he will start to feel better,

Take care,

Nikki

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ah thanks Nikki, he has a picc line in chest which was reading for his chemo but they wont use it as they say its cross contamination,


He was awake and lucid when I went in yesterday afternoon, I nearly fainted when he said hello. His bilirubin levels have gone from 990 to 500. He managed a tiny bit of yoghurt form me . They are outing a feeding tube in which hes not happy about but he has hardly eaten for 5 weeks.

xxxxxx

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Ah Jayne, I've just read all this. It must have been really frightening. I am glad that he feels better now. I am praying for the best! Thinking of you! Susanna x

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Carole McGregor

Jayne, I don't log onto the forum much since my husband died last year and haven't posted on your thread before but just happened to read your last message and can't bear the thought of you sitting tonight with your world falling apart without knowing how many of us out there feel your pain. This is not how it is supposed to be. You are clearly a strong woman and devoted to your husband. Hang on in there and know that we are all thinking of you and sending our love and virtual support. Cxxx

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Hi Jayne,

I've been reading your posts and know exactly how you feel as my husband died last September. Just wanted you to know that there are many on this forum who will be thinking of you and your family and will support you all we can.

Take care,


Hilary

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Phoning palliative care nurse at half 8 in the morning, I asked 4 times for extra pain relief this afternoon it took 1 hour and 20 mins for someone to bring something, tonight it took 30 mins to get extra pain relief and had to ask 3 times,


I woke up at 2 am as I felt he was in pain or cold so I phoned the hospital . Nurse checked him and he was in pain.

Im staying the next three nights to monitor the pain and look after him as my daughter is going on sleep overs.

Going to phone the hospital again to check on him

x

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Dear Jayne,

I am so sorry, this disease is hell bent on causing maximum stress and devastation to the loveliest of people. Hope the palliative nurse can sort the pain out, they perhaps need to increase the drugs in his driver? If things are no better I would to speak to the sister on the ward today (or go higher if necessary and ask if there is a matron) and tell her how long he has had to wait for painkillers.

You are going to be exhausted over the next few days, but I would want to stay with him too, so try and rest and eat a little when you can,

Lots of love,

Nikki

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Dear Jayne, I am so sorry yo hear your devastating news and it's just so terrible that you have to still push for care and pain relief. Thinking you all and hoping you get him home soon. Fiona X

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And I phoned McMillan nurse who phoned the ward! Palliative nurse got things sorted this morning and pain now under control. Increased strength of morphine in the driver and if needs be can have an injection every hour. Hes less yellow, more with it, had a few crackers, ham and cheese for lunch and one twix finger. They have suggested an enama, which I cant spell and he said im not using a bed pan im going to the toilet. (Not sure if this has happened yet) Change in attitude of the sister in charge is amazing! I am going to live in the moment, thank you for everyones support.

x

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Well done Jayne,

I have a nursing background, but am now a health visitor, and I feel so let down when I read stories here of nurses not making pain relief a priority. Thank goodness you are there to fight his corner. As I have said before, if you complain you do get better care!

Good advice I was given here when Paul was poorly earlier in the year is to concentrate on making memories as a family, and that is something I always keep at the forefront of my mind. Living in the moment sounds a good plan.

Thinking of you, your husband and your little girl,

Nikki

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Thanks Nikki


They haven't stopped antibiotics, vit k, saline, glucose, etc just said no more scans !

Going to the hospital at half 8 ish for the night.so I should get more sleep than being at home.

x

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