It is early morning here and I thought I would post our latest update before really starting the day.
This morning Paul woke me up early and said he had pain in his liver, on the right side in his abdomen. He said it had been there most of the night but he hadn't wanted to wake me up.
We got up and had breakfast. All the time I was trying to surpress my feeling of panic and my tears.
There seem to be so many things going on and we don't know of course how they all relate. The high CRP of 96, his very low Albumin levels, swollen feet, weakness, shortness of breath, occasional confusion or saying things that don't really make sense, overwhelming sleepiness and now even the liver pain.
And it is only Saturday. We will have to wait until Monday to go into St. Luke's Hospital. I am hoping that the doctor will do the Chemo then and not wait until Tuesday. Normally he would have to because the Chemo is based on the recent blood tests and kidney function, but Paul had his bloods taken so often in the last while and the kidneys have always been stable, so maybe he can get the treatment on Monday.
I am really so scared at the moment. I am notsure if Paul is or not. I think he is so busy with trying to survive and the experience of all these symptoms is so difficult that he doesn't really have time to think.
I so much hope that the next Chemo infusion will help him and reduce his symptoms. The Albumin level might even come up again once the liver can work better again because the cancer has been pushed back.
Paul is sleeping agai now. I think I will get him up and we will go for a little walk, it is so nice outside, and it might help him and give him some positive wibes.
Personally, I feel really tense and all I can focus on is Monday and that we will hopefully, hopefully get somewhere with the Chemo.
I am so scared that we may have lost the fight. And that is possible. Of course it is. And nobody could say that Paul hasn't fought long and hard.
But I don't want it to be over. I don't want to let him go yet. And I know that he doesn't want to go either. So I am hoping and praying that he will make it through this weekend and through more Chemo, that the cancer will be pushed back and that he will therefore start to feel better again and that we will be able to enjoy at least this summer, hopefully longer, with each other.
Sorry for this very dramatic posting. I know it sounds dramatic and more as if I was writing my diary. But I just felt I wanted to let you know how I feel.
Best wishes, please think of Paul and pray for Paul if you can.
Mel.
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MelaniePaul
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I feel for you and Paul. The both of you are so strong and are relentless in your fight aganst this horrible beast called Pca. Paul is so lucky to have you by his side through all this. Some are not so lucky. Still praying Mel!
Remember one thing always, we are all with you, in mind, body and soul. Paul and you are never alone. The darkest hour is just before dawn. Dawn is on the way, have faith.
Living with Pca, every new pain or discomfort----is it or isn't it more APca?? A worry we all live with. Wish you the best next week and praying for you now.
Mel. Prayers continue for you and Paul and my heart cries for both of you. I know where your post is coming from having been there. All I can say is keep doing what you are doing - don’t give up, but also rest when you can. You need to keep your health up too. You and Paul are a good team. Hugs, love and prayers!!
Thank you, everyone, for your kind replies, thoughts, wishes and prayers.
I am really frightened tonight as Paul is continuing to feel worse. He is very weak and dizzy and has stabbing pains in his liver all the way up to his shoulder.
All I can say is that I am hoping that we can make it until Monday when we see the doctor.
It sounds weird, I know, but I really think he needs the Chemo again. It will hopefully work once more and push back the cancer. I so much hope that this will happen.
Mary, if yo take a person to emergency here in Ireland, it takes at least 15 to 24 hours to be seen. There is constant overcrowding here in our hospitals. And we would rather see his oncologist on Monday in the cancer hospital.
Does the oncology team have a help line. I’ve never used ours, but I know there’s one there if I need it. If not, maybe a call to the doctor. He may say wait till Monday, but he might say something different. Apart from that, I like mjbach’s suggestion about the ER. Stabbing pains are scary. My best to both of you.
You might also possibly find some immediate advice/support ideas from some Cancer Nurse hotlines or Daffodil Centres in Ireland. Tell anyone you can about the severity of the pain and his symptoms.
Dear Paul and Mel, This post is heartbreaking. You’re hurting terribly and sound trapped. What can we do who are also flipping about on the deck with no obvious means of escape? We can’t simply say “be of good cheer”. How can you even take a walk?
As for us, we haven’t been making it to the yard. Les’s pain yesterday was all-consuming. It’s sharp and burns or stings in many locations—shoulder, right side, left side, back, incision, etc. He leans forward in an attempt to relieve it, lies down, gets up again. What to do? We must wait until Thursday for the post-op, the same day I must attend a funeral with my brother.
Mel, what are your meds? We’re getting by on a tiny bottle of 2017 ibuprofen. We haven’t reached the daily limit, but he does better if taking just one every few hours. Survived without any for the past seven. Our hope (which admittedly falters) is in God, and, yes, Nal has helped with that.
Everyone who has already written is full of love and concern. A good friend of ours, whose wife will someday die of pelvic to lung cancer, told me the other night to hug Les close in bed. We do when we’re in bed at the same time! It’s a little different when it’s your father, a time I will never forget. I had to turn away weeping which, with his Alzheimer’s, I didn’t want him to be distressed about.
It’s a new day, Sunday. In our yard the garden is full of weeds, but the magnolia in the “forest” has bloomed and the lilacs are just about to. A pair of ducks waddles hurriedly through grass already in need of mowing looking for a place to nest. After an interminable winter, what a relief to see spring.
I hope you were able to take that walk and that someone somewhere in Ireland will come to your aid. I’m a little bit Irish (Carroll). Always thought of your land as ideal, but, health-wise, not at all sure right now. Love to you both. Dear God, be with them. Jan and Les
Sending prayers your way. My husband has been having some adnominal pain also. We are hopeful it is just from the constipation from the low dose morphine he is taking. He, too, leans forward with pain. We went to Ireland 5 years ago and it was so beautiful. Hope you get to go for a walk today.
HI Mel, I totally understand where you are coming from! reading your post I started to cry, I've had all the same emotions. Paul sounds like he is a lot like my husband. Sam is also a strong person. I think some times it's harder on us the caregivers.
I don't know what causes this confusion, not making sence at times?? I've noticed this with my husband to? I've heard of "Chemo brain," but it's almost a year sence Sam's last chemo treatment? This for him is getting worse and I worry abou that along with all the other issues??
Mel, I agree with maybe getting Paul to the er. If this bad pain continues. I'm so sorry that you are going through Never give up... I. With you, it's been almost ten years for Sam, with his prostrate cancer. Many bumps in the road and Mel, I a with you!! In no way am I ready to let go. How do we say good bye to someone we've know for over fifty years.
Mel, I have good feelings that this will turn around for Paul. That he will get the chemo treatment or what ever the doctor wants for him at this time and it will put this beast to rest for many years!!!!!! I Will continue to pray for you and Paul. Take a deep breath,hang in there and keep us posted.
My prayers are with you. You and Paul are not alone. We are all here with you during these difficult times. So hard not to think the worse during a very long night. Your idea of a walk sounds good. If he isn’t up for it, maybe sit outside and enjoy nature. We find it soothing during those scary times. Please take care.
My heart goes out to you and Paul. We are on a painfully similar journey with my Jim. We have done almost everything together for more than 40 years. Our youngest grandson calls either of us he sees separately “PaPa & NeeNee.”
Isn’t it amazing how long a weekend can seem when you are praying for Monday.
Praying for you two right now. Being a caregiver is very stressful. Praying the pain would subside and that chemo would be effective. You take care too.
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