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 you may find that Peter somehow decides himself when he will let go and who is there. We tried to give him the opportunity of being with us quietly, leaving him peacefully on his own with us just downstairs. His best mate came with his daughter the day before Steve went and his family were visiting every day, the morning of the day Steve died Samantha, Daniel and I were with him a lot (although by this time he was deeply sedated and just seemed to be sleeping), but it wasn't until his mum, dad and sister arrived and we arranged for all of us to be together at his bedside that he suddenly changed. He left us within minutes of us being together and with him. When the time comes it will be right for you and Peter, maybe with the girls there or maybe in the quiet of the night just the two of you.
Julie, if you read this don't worry about making the wrong decision, if you can get Ian to the hospice it will be the right decision for you and for him, you are trying to give him the peace he needs. Our lovely husbands know we love them and everything is the best we can do with these very awful circumstances.
Cherryl, I'm sure you will do the right thing. As Esme says Peter will probably decide himself when to go. I'm so glad you have your family all around you keeping things lively for Peter to hear all the usual home sounds. Thinking of you always. Love to you both.
You and Julie have thought long and hard about this, And I'm convinced from what you have both written during the past year that you are doing the right things by them.
Thank you everyone for your thoughts. We all have to 'play it by ear' so to speak. Today it is quite clear that I will keep him home. Tomorrow, who knows? I just want him to be comfy as do you too Julie and Jenni. How are you both today?
I cannot believe how strong I feel at the moment, where is this strength coming from, did you feel like this Rosemary and Gary and all those reading this who have gone through the same nightmare? Am I secretly hoping for a last minute reprieve, a newsflash on the telly to say they have found the chromasone that is causing all this grief in the World and by taking a cheap tablet will grant us years more good health? I did shed a tear today but not for our predicament but for the 4 little babies who have lost their life since Christmas after undergoing heart operations, my heart goes out to their parents, families and friends and of course the little ones who have already had their ops, the families must be worried sick!
Am sitting here with my coat on and a blanket wrapped around my shoulders while Peter has the fan on him. I have not been able to put the heating on for the last 5 days cos he gets so hot! Cannot wait to settle him down for the night and then I can crawl into my little bed beside him and get warm under the duvet. Cannot hold his hand though cos his bed is so much higher than mine. He did sleep better last night thankfully due to the catheter! The DN's had to get him to stand this morning so they could see to his bedsore which is in a very difficult place so while he was up they weighed him. He is still 17st..........he has not eaten since Christmas? The weight must be the fluid retained around his body?
Sending you very warming thoughts tonight Cherryl, in fact I will imagine a proper hot flush for you shall I? Steve used to get too hot also, luckily for me I have been thermostatically challenged for some time so I'm usually too hot anyway and it wasn't too much of a problem. As for the strength, I don't know where it comes from or how we get through it must just be the auto pilot we have to set ourselves on and also the only thing left for us is to love and care for them so thats what we focus on. I did cry though, often at meal times when I looked at the empty place and knew it wasn't going to change, but on the whole I wouldn't let myself think too far ahead and if I did my mind would go into shut down or I think I would have gone over the edge - Steve and I didn't talk much about what was going to happen inevitably. I think you are right too and we still always have that spark of hope, this isn't really happening, something will change and we will get a miracle and it will all be a nightmare we look back on in years to come.
Whatever it is that gets us through Cherryl you are doing amazingly well and we are all very, very proud of you - but not nearly as proud of you as Peter is. So sending you lots of love, a big hug and the warmest thoughts I can muster xxxxx
