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 have put a post on the 'triplets' forum but as this seems to be our new 'place' i will re write.
Sadly my darling Ian passed away last night at 6.45 pm. I kept him at home as this was his wish. Did i do the right thing? I did for Ian but his last 2 hourse were very distressing and we couldnt get the District Nurse to come and adminster more medication (a total shambles if im honest).
It was lovely to see Ian finally at peace after such a long struggle and we kept him at home for about 5 hourse afterwards. Right now i just feel in shock, i have never been through such a harrowing and exhausting experience-boy did i underestimate the evil that is cancer. Today i have cleared my home of all Ians medication, equipment etc-i just want all evidence of cancer gone from my life. I am struggling at the moment to remember Ian how he used to be before this cruel disease ravaged his body and ripped our world apart.
Cherryl, you are in my thoughts constantly and i wish you lots of strength for what you have to face, i pray Peter will have a peaceful journey,
Lots of love and strength, from a brokenhearted Julie xx
Sending you love and hugs. You and Cheryl have been so brave, I have been following your posts. I just wanted to say I am thinking about you. I am glad that Ian is at peace.
Been thinking of you all day Julie! Sending loads of strength for the days, months and years to come. Sadly have just read of the passing of K , Blue Pheonix' hubby, what a terrible time we all seem to be having. Thanks everyone for your comments, we are not so much brave but doing the best we can for our loved ones under the circumstances, Gary, Ribbsie and many more will understand that themselves!
Julie, you will remember the good times and you will get back good thoughts of your Ian. Slowly the thoughts of the final, awful months are replaced by the good times and memories, I don't know if it ever leaves you but it certainly gets less and you can deal with it. Thinking of you and all my lovely friends on here, bless you all xxxxx
