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
I cannot believe that you're not allowed to see Peter. He is your husband and now above all times is when you should be with him. I hope that by now someone has come to their senses and helped you.
We were able to stay with my husband right to the end even though he was taking up an icu bed and I know how that helped us to accept what was happening.
Thank you so much everyone for your kind replies and help. Have had a really busy afternoon but have sorted the whole of the NHS out!! I started by phoning the MAC Nurse, Cancer Care Nurse, Palliative Nurse, Ward Sister, Registrar and then I finally spoke to the Doctor who had given Peter this awful information. He apologised profusely and admitted that their discussion with him had been hurried and true to his word he went straight back to the ward to speak to Peter again.
What they meant to say was because Peter's INR was still running at 4.8 - 5.0 they obviously could not fit a canula for drainage. Syringing would not be an option because everything would fill up again pretty soon. So they had decided to send him home on oxygen on Thursday so he could have a proper rest and where he would be happier. The District Nurses would keep an eye on the INR and once it dropped to below 3.0 they would take him straight back in and do the drainage then. Unfortunately, as has happened to Peter all through this horrible 16 months, Peter has to be different. His INR this afternoon shot up at 10.8 so had to have a vent put in to administer Vitamin K. So now everything has changed. His liver is causing the trouble and he has started to bleed in the bowel.
In order to discharge by Thursday an airbed is being delivered tomorrow and the DN's are all in place for three or four visits a day or more if needed. In the meantime they are keeping an eye on his syringe driver, which does seem to be the only thing working at present. I have been with the palliative nurse this afternoon and she has explained all that will happen, give or take a glitch or two! Most of it I already knew but she was very good and also she said not to worry about the recuss thing. Peter doesn't have any heart problems and neither do any of his family so she said it is highly unlikely? he suffers an heart attack, more likely failure instead. He will sleep on and off most of the time and they will keep him topped up with morphine etc. He will not be aware of any bleeding. I feel a lot more calm now and our lives won't be changing much really because he has been sleeping or sitting around ever since his first treatment.
He doesn't realise what is happening to him and was quite happy with the Doctors apology for the 'misunderstanding' earlier. I am so relieved and can handle him now. I have become so very protective over him I will not allow anything like today happening to him again and am so pleased to have him home with his family and friends popping in 'as normal' within reason of course!
I have set his bed up in the dining room where he can see the back garden patio and the bird table and early morning sun to the right and the front garden and driveway and late afternoon sun to the left. The telly can be turned for him if he wishes.
I would much prefer him to be on a sunny beach in sunny climes but will make this place the next best thing.
I am very cool, calm and collected as many people have commented lately. Watch this space when the time comes and I have lost the best friend I have ever had and a wonderful husband and father, things will be different!!
