Thanks. A difficult evening made slightly less difficult by someone sharing.
Yesterday was Petra's funeral. It was wonderful and horrible at the same time. The Church was packed, the hyms powerful and the minister cool. We couldn't affect a Jewish-Catholic rapprochement but it was a good atheist-Methodist-Anglican-Moslem thing.
The eulogy was by a guy who looked like me. In spirit, I was in a corner of the room distraught and in a heap, while my phsyical form stood up and spoke. People laughed. They said how great is was. I can't believe that it was me. Something took over. People said they recognised Petra in what I said. She was so funny. I don't think I will ever have fun like that again.
My heartfelt condolences for your loss. A lot of us are going through similar journeys albeit at different stages. We are therefore with you in a way.
You are right about this forum, it's love in action and is very humbling. I am sure you will be able to take some strength from it.
You are all awesome. Lainy, you particularly. I was having a hard day today but the posts on this forum helped enormously. Maybe a good day tomorrow and the strength for Petra's funeral the day after.
Thank you all for your lovely replies. They mean a great deal. Claire, you are the second person to send me that poem. It is very beautiful. Lynn, my condolences to you. I find it incredible that barely a month after your own loss you would take time to consider mine. God bless you. God bless you all.
I know I will come to understand this better. Thank you for sharing it.
Thank you again for your lovely replies. We certainly squeezedthose ounces. On 29th October, our daughter had her seventh birthday party. The hospice lent us an ambulance and a nurse so that Petra could go to the party. She had a great time.
After that her condition deteriorated but she was still with us on 3rd November, our daughter's actual birthday. We took the kids and presents to Petra's room and we celebrated together. Not long after I had taken the kids home and put them to bed, Petra died.
Thank you all. Just read all your lovely replies.
This morning I took my mother-in-law and our two kids to see Petra. Whilst at the hospice, our friends show up with their two kids. My mother-in-law had to pack her suitcase so I brought her home and left our kids with our friends and their kids. They were going to stay for half an hour or so and they would bring our kids back.
Just had a phone call from one of the friends. They are still at the hospice and have been sat outside in the hospice garden having a picnic with Petra. I have to go and join in before our kids have to go to theatre (theater) school.
Thank you Margaret and Darla. Lainy, your poem made me cry. I seem to be doing a lot of that at the moment.
The hospice has done wonders. When she went there, I fully expected it to be over in days but she has picked up since then. She now entertains up to fifteen visitors and won't stop talking or at least trying to talk. When I told her that her mother was coming (her mother is a difficult lady to live with, you understand), she turned to the nurse and asked for more morphine. The hospice even arranged a shopping trip for her with a nurse and our six year old daughter. All the staff love her. This week, she spent a couple of days back in the hospital to sort her drain out and we were worried that she might lose her bed but the sister told us that the staff would never allow it.
I can't express how happy I am that she has had these extra days. It's so strange that in the midst of despair, some things can be so joyful.
Love to you all.
My wife has been through a lot of what you are going through. She found the cream worked quite well. We have also found that her bilirubin went down though we don't really know why and neither do the doctors.
Wishing you many good days and relief.
Oh, and I've also always thought that a good bowel movement is a thing to be celebrated.
God bless all of you who take time to post on this forum and give you strength to see through your situation.
Petra was moved to a hospice on Friday. I went with her in the ambulance and the journey took us past the church were we got married, the university where Petra taught and I studied, and our favourite restaurant. We are very lucky to have had such a wonderful marriage for seventeen years.
Tomorrow her mother flies in from Prague. Today my best man and my sister are coming. I need to talk to the children and reassure them. My head hurts. Every little task seems to be a monumental effort. I know I will get through.
Mustang, the whole ranch in Utah thing sounds idyllic from here in the industrial heart of northern England on a rainy day. The notion of such has cheered me up.
Peggy, God bless you. Thank you for your lovely post. Keep fighting the fight. We did and I think it made it better. I wish you as many good days as possible.
I went to see Petra today and she is looking worse. In the bed opposite was a young woman who is also very sick. Petra said to me, pointing at her, 'you remember Yvette?'
She teaches French at a school where I used to work. She is in her early thirties and is stage IV. She used to be so pretty and full of life and such a good teacher. Now she is gaunt and terrified.
Petra's situation is crushing me but I can't let in make me angry because I would go mad and I have children to care for. I am angry about Yvette because I can be.
I can't express how much I hate this f**king awful disease.
My wife, Petra has been in hospital since Monday. They inserted another ascitic drain but her blood pressure is very low so she is having intravenous fluid. How much of this then goes into her abdomen and is thereby drained is anybody's guess. The doctor we spoke to on Monday said that her liver was pressing on her portal vein and preventing the processing of fluid in the correct manner. To add to things she has pneumonia.
Does anybody have any experience of this viscous circle? They are talking about a different kind of drain but if her blood pressure is low I don't see how this would help.
Also, all the people who take time to post on this forum are wonderful. Just so that you know. :-)
Thanks Lainy, this is really helpful. I am terrified of not being to cope when Petra, my wife is no longer here, particularly because so many things will remind me of her. I don't feel so bad after reading the beautiful things you wrote about Teddy.
God bless you.
You are coping with a lot here. I am also playing the waiting game and know how difficult it is and how knowing something would seem to make it easier.
I know what you mean about anger and lashing out. It's perfectly natural. People will forgive you, particularly if you talk to them about it afterwards. Sometimes the hardest thing is to forgive yourself.
I have been told by our oncologists that tumour markers are a poor indication of anything specific. My wife's CA19-9 hit 11,000 in May but has subsequently gone down and is going down still. Despite this, she was physically quite well in May and is very poorly now. I think cancer is a disease that does not always behave in predictable ways and that its development changes in its intensity for no apparent reason. It makes it difficult when you want some understanding of the future to give you a little peace of mind. We are both in the same position.
With greatest sympathy,
Thank you for all your wonderful responses. I am deeply touched that people would take the time to offer comfort in such a way. God bless you all.
Marion, thank you for the advice. The children issue is perhaps the one that occupies my mind the most and I am almost more afraid of their pain than I am of my own. I work with kids and hope that my experience will be of use. I will try to internalise the wise words of Dr Giles and I am sure they will help.
mn, thank you for your post. Sometimes I look at my wife and I think that I really have no idea what she is going through. I know what your dad's going through and to an extent what you are going through.
Maria, thank you for your question. She has started on chemotherapy with a drug called 5FU mixed with another drug whose name escapes me. The stent issue has not arisen as the symptoms of blie duct blockage are relatively new.
Lainy, thank you for your advice. I think I understand what you mean about strength. Having children in this regard is helpful. I think if I only had to find strength for myself, I would just fall apart but having to be strong for the kids means that I will be. Sometimes I think my wife's death will be my finest hour as friends have already been telling me how well I am doing. In a way this helps but also makes me feel terrible. How wretched would I be if I took pride in using this opportunity to show all our friends what a cool guy I am? I keep telling myself that this is not about me but fundamentally all human beings are egocentric. I think the answer is 'just do your best'.
We do have some contact with the local hospice and havae been in touch recently. Unfortunately our palliative care nurse has been away on holiday for the last two weeks and gets back on Tuesday. I am sure that a serious conversation about ongoing care will take place this week. The funny thing is that we live in Leeds, England and she has been on holiday in Pheonix, Arizona! You may have walked past each other unknowingly.
CM, thank you for your kind words. We have both been well supported by cancer charities and have been on courses about coping strategies, so I know what you mean about breathing. I also find that coffee and cake helps.
My wife was diagnosed with cholangiocarcinoma in November 2010. She had the standard treatment cisplatin/gemcitabine until February which had no effect. She has fought very bravely and we have explored all the medical and alternative possibilities that we have been able to find.
She has been relatively healthy until the end of August when fluid started to build up on her abdomen. They drained seven litres last week. She had become jaundiced and has become confused and even experienced hallucinations. She thinks that the confusion is a side effect of the painkillers but I think it might be the disease.
My thoughts have turned from treatment and length of survival to concerns about her suffering and the memories that our two young children will have of her. I used to pray for the end to come slowly, now I pray for the end to come quickly.
I have found reading some of the posts on your forums to be very moving and I have found some comfort in them.
Thank you for this.