Thought whole point of Palliative Care was to make the patient comfy?
4 minute read time.
FormerMember
As you know, Peter was admitted to hospital on Sunday 14th Feb and it was found he had pneumonia with an underlying virus. They kept him in an assessment ward for 2 days until transferring him to the Respiratory Ward in the same hospital. He has struggled on with his breathing even with the oxygen and has not been able to eat, or even drink much at all. He has terrible heartburn and was really feeling poorly. Has been sat up 24 hours a day with very little sleep in between due to the comings and goings of a busy ward. Most of us know this old story!
Peter's lungs are full of fluid as is his abdomen. The abdomen ascites is what is causing the sickness because of the strain on the stomach. This has also been affecting any medication he has been given over the last 10 days. Sickness tablets, morphine etc has not really been very effective. As we know nothing about medicals much, we sat watching him deteriorate before our eyes. The drainage of the lungs and the abdo could not go ahead due to the Warfarin causing his INR levels to be so high. They stopped the Warfarin on the 15th February but his blood carried on getting thinner and thinner, which is OK-ish for someone suffering from clots caused by cancer thickening the blood but not for a surgical proceedure. They couldn't really work out why his bloods were not thickening up again while off the Warfarin but he was on antibiotics which could be why! Saturday he finished the antibiotics so we have fingers x'd things will get better for this week. The Doc did say last Thursday that if things were going well Peter could have the drainage done, in three stages and be home by next Friday.
Couldn't contact anyone over the weekend regarding him coming home, ie: District Nurses etc because there is nobody available to speak too. So we sat patiently waiting for Monday morning when I could start ? arranging for him to come home. In the meantime the nursing staff, including the Sister on the ward were running themselves ragged trying to cope with the D&V virus on the ward, it is horrendous. I have to say, the staff are all wonderful but shattered.
So, yesterday I contacted the Macmillan Nurse who has been assigned to us and surprise, surprise, she is on holiday from Friday for a fortnight. We have met her twice in the 16 months Peter has had the cancer that is all! So she told me to contact the District Nurse to arrange for an airbed to be delivered for him. This he needs now because he has a Grade 1 pressure sore and has got this sort of mattress in the hospital at the moment. The DN started going on about him not having it when they were looking after him and why does he have it now. She moaned about getting a mattress. She asked what the Palliative Nurses were doing? I said he had not seen any! She asked why he didn't have a syringe pump fitted? I didn't know? This apparently is how they get any medication into the system pretty well straight away. I am so concerned now that I seem to have to find things out for myself!!
Peter had the syringe pump fitted at 8.00 last night, so something got moving at least and when I phoned this morning they said he was much brighter. He phoned me a little later and said he had had some breakfast and did not have any heartburn. I cannot tell you how happy that made me feel and cheered me up no end.
Then 10 minutes ago I get a phone call from Peter to say the Registrar had just been to see him and they have decided not to do any more invasive things to him, so will not be draining the lungs or abdo afterall and they are sending him home on oxygen. They reckon his lungs and abdo will fill up again because it is cancer after all! He is gutted, I am gutted..... I asked for the cancer not to be mentioned to him at all. Even the Oncologist yesterday didn't mention anything at my request bless him. I have phoned the palliative people and they are going to find out why the change of plan for Peter's comfort! I am so so scared. I have tried phoning him back but cannot get a reply, they won't let me onto the ward if I go down even. He needs me to be there and I'm not WHY WON'T ANYONE LISTEN TO ME!!!
Will give an update as and when I can.
Cherryl
FormerMember
Cherryl-i have only just read your post-by accident. i dont really go on the main site now just 'triplets'
I cant believe what you have gone through, but must admit i know exactly where you are coming from. We have still to meet our Mac Nurse (she is coming tomorrow) even at this late stage for Ian. I must admit the District Nurse has been excellent and has arranged continuing homecare for us as Ian does not want to go into a Hospice. I have been assigned Marie Curie nurses for night sitting although havnt had one yet.
Cherryl it seems we are both at the same stage with our 'hubbies' and the going has started to get tough. Please feel free to pm me anytime,
Hi everyone, thank you so much for your love and hugs, it does help as you all well know. Well Peter is home and in bed thank goodness but it was a nightmare getting to this stage.
The morning after the vitamin K injection his INR fell from 10.8 to 1.7 so they syringed the fullest half of the lung and took out a litre of gunk. Sadly but expectedly it is a malignant pleural effusion so we now know what we are dealing with. The Warfarin will no longer be used, just the clexane injections daily. He will not be having any other drainage but he doesn't know this. They are keeping him comfy and as pain free as they are able. All I have to do is sit a watch as he slips away.
The ambulance arrived on the ward but his medics were not up from pharmacy so they had to let it go. At 3.00 yesterday I had a call from the ward asking if I could arrange my own transport!! I didn't want him in hospital a moment longer so took the portable oxygen tank that had been supplied to the house in the morning along with the rest of the tanks and brought him home in the car.
With the airmattress on the bed now and because he can only sleep sitting up, his knees are almost under his chin and the alarm keeps going on the mattress but ........he is home!!! The DN's are all angels and have been back and fore the house a number of times yesterday and today so far and of course I have the emergency line to call during the night if needed. Still waiting for the MAC nurse, if she doesn't turn up today it will be another fortnight before seeing her cos she is now on holiday. I am not concerned, the DN's are my saviour.
Jenni, we are going through the same things, I will PM you when I have a moment. Big hugs to you both.
Hi Julie, Missed your message as I was whizzing to the bottom, sorry you are going through this too. Glad to hear you are being supported well. Take care.
District Nurse has just called again, bless her, she has ordered Peter a new bed with the extention, a bed table and arranged for Social Services to do something niffty with my chair so he can get out of bed for a little while during the day. Life is a whirl, now they are on the case. Funny that.......head nurse asked me where I got the notion that I would have 24/7 service a couple of days ago and now here it is???? And boy oh boy am I grateful.
Cheryl. have to agree about the District Nurses-ous has been very supportive. Finally met our Mac Nurse today, very nice but not a lot she could really add. Are you having Marie Curie for night sitting? I am but cant get one til Monday night, my eyes are on the floor somewhere-no sleep at all last night. Is Peter confused at all? Ian is very disorientated last night he was shouting for Jo (or maybe Joe!!) none of us know a Jo and then we had the whole repertoire of the characters in Neighbours-if it wasnt so heartbreaking it would be quite funny. Apparently when the liver isnt functioning as it should it releases harmful toxins into the brain and this is what causes the confusion, Mac nurse said they can give medication if it continues.
Sending lots of love and strength to you, feeling your pain, Julie xx
