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Thanks Ladies. It’s good to share. Joyce, your posts are NEVER tedious! I find your posts very touching and very down to earth and human. Both you and Patricia (and many others) have been a great comfort to me, and I thank you for that.
LTSO, and CDR, it is truly hard to read your posts. So sad. I never thought of the grieving being something that starts BEFORE death, but it is. This CC arrives in peoples lives, and causes havoc. An emotional roller coaster, that unfortunately feels like a big downer much of the time.
Anyway, I have been revisiting the days of Mums illness and death alot recently. Maybe it’s because I’m approaching the 6 month mark. So I will have another ramble, as I do.
I was giving more thought to the subject of losing a loved one. One of the things that is a guarantee in life, is that you will be parted from those you love. It is something we all have to deal with, at somepoint in our lives, be it death, or otherwise.
Someone was giving a talk I attended recently. He talked of 3 main types of suffering in life……..being parted from those that you love, not getting what you want, and getting what you DON’T want! Seems that CC covers the 3!
I guess for me, one of the things that has helped me, is understanding that the general accepted order of things, is that you outlive your parents. It’s not a given, but it’s kind of, dare I say, more the natural order of things. We all know we are going to lose our parents, we just don’t know when. I’m not saying that it makes the loss NECESSARILY easier to deal with, but it has helped me. I could not say that, had I lost my child, or a spouse, or my Brother.
Also, what helped me, was that Mum was so upbeat about it all! I am so lucky to have been blessed with such a positive Mother! Even when she was in the hospice, the last 10 days of her life, she was looking on the bright side “Just think, I’ll never have to go to the dentist again! And I won’t be old and decrepit, and be miserable that I can’t do all the things I used to be able to do!” BLESS HER!! She always told me she wasn’t afraid to die. She said either she would end up in heaven, and be re-united with her loved ones, and if that wasn’t the case, then she wouldn’t know about it, because she’d be dead! It was heart warming to be able to discuss EVERYTHING with her, down to the funeral arrangements. She made it a whole lot easier for me, and my Brother. I think it was because she’d had such a good life, particularly from the age of 50, when she gave up “normal” life, and chose to follow her heart. What a legacy. She had NO regrets. She was very clear about that. Her whole attitude served to make it all so much easier to bear.
The thing that she DIDN’T like the idea of, was of the suffering bit, in between being told she was going to die, and the actual dying. She didn’t want to suffer. But she did, of course. That was what I found so very hard to bear. I am sitting, wondering if I can type more on that. Maybe a purge would be good?
When she was rediagnozed in January, 7 months after the resection, she was told she had maybe 3 months. She bravely left her home in Kefallonia (one of the Greek Ionian islands), and returned to UK, having not lived here on a permanent basis for 18 years. She came to stay with us. In returning to UK, she knew she would have access to better medical care, and to a Hospice if necessary.
The thing is, she accepted it all, so bravely. She always said she wasn’t brave, but I think she was. She arrived back here early Feb. In March we got a 2nd opinion, and the Docs said the same thing. She was doomed, basically, but they couldn’t give a time frame of course. BY mid March, she was going downhill. We thought it may be the different drugs she was on, or maybe the slightly different diet etc. We were always so positive, imagining that if she just got the right drugs, her condition would be more manageable. By early April, she was in hospital, and 8 days later she was in the Hospice. I think by that time she was, quite frankly, fed up with the whole thing. Digestive problems, severe bloating, pain. She was losing her quality of life. Just before she had gone into hospital, she had taken a train up to the middle of England, to visit her Brother. A week later she had rung me to say she didn’t think she could make the same journey home. I offered to drive up and fetch her, but she ended up coming as far as London on the train, where I met her, and did the last leg home with her. My Aunt said she had spent most of the time in bed, sleeping while she was with them. She continued to do the same when she got home. Her appetite was all but gone, eating sparrow portions, and feeling worse as a result. The pain and discomfort was so bad, that one Sunday, I called the Docs out. They advised that she check into hospital the very next day. Which she did. 8 days later, she was transferred to the hospice.
Anyway, bad to worse…….about 3 days after she arrived at the hospice, I got a call from the nurses. She had had what they THOUGHT might be a TIA. They told me it had left her a bit confused, and had affected her speech. But they said if it WAS a TIA, then she should be back to normal within a day or so. Well, she wasn’t. That SO pissed me off. I was gutted. She seemed to be fine, but would just forget the simplest words, and then get frustrated, because she couldn’t remember. She KNEW she was not remembering. That was what hurt. Oooh, this is hard to write. Then 3 days later, it got worse. What was so upsetting about it, was that she was being denied the 2 things she could enjoy. One was reading. I think the morphine rendered her incapable of concentrating. But losing the gift of simple chatting, that was what I found hard to bear. I couldn’t have a decent conversation with her anymore. And that upset her too. ALSO, she had initially just gone to the Hospice, to get her pain mediaction sorted out, with a view to coming home when it was done. And suddenly, there she was, unable to concentrate, unable to communicate properly. The Docs called me in after the second “episode”, and told me they weren’t sure if it was a stroke, or maybe the cancer had just gone to her brain. This was 4 days before she died. She died on Sat 21st April. On the Wednesday (day after 2nd episode), she was mostly sleeping, and in between suffering pain, and cussing endlessly. My Brother arrived from New Zealand on the Wednesday afternoon. That was the last time I really saw my Mum. I woke her to tell her Chris had arrived. She had NO knowledge that he was coming! I had been counting down the days and hours with her, and she had totally forgotten. She sat up, and was so happy to see him! “Chris! What are you doing here? How lovely to see you…” etc etc. Then she had a cup of tea, and ate some cake, and told him “You know. This is BULL****! It really is. This is all BULL****! I was supposed to die a dignified death, and I’m having to have all this BULL****!” She talked to him as best she could for about half an hour, and then settled down to rest again. I think, inspite of forgetting that he was coming, she had been waiting to see him. My Brother went home that evening to try to get some sleep, and defy the jet-lag. That night, was the night that I broke down completely. My Mum was such an independent woman. By now, even going to the toilet was a physical effort. And that evening she wanted to go. And she needed help. But when I tried to help, she got so angry with me. She didn’t even know where it was, where she had to go. She was so out of it, that she thought the chair next to the bed was the toilet. And I kept saying that she should come with me, and that I would help her(the toilet was in the same room, just separate). But she would not have it, and was so cross and agitated, that I had to call the nurses, because I couldn’t cope with my dear stubborn Mum. I had to leave the room, and as I walked doen the corridor, all I could hear was her shouting, and begging to be left alone. It was the worst moment for me, just the worst. I locked myself into one of the visitors toilets, sank to the floor, and just cried, and cried. The nurses were so kind, when they found me. Ther also found it hard. They said that they felt felt bad too, because she needed help, and they wanted to give it, but they felt like they were “assaulting”her, by trying to assist her. It was so so sad.After that night, she never really talked again. She just mainly slept, and then got agitated, by anyone trying to do anything, like change her, or give her her medicene or anything. It was awful.
On the Friday afternoon, she was so agitated, moaning and obviously stressed. My Brother and I were both with her. The nurses upped her doses of morphine. By 7pm, she was sleeping, and calmly, so calmly. None of the agitation she’d been suffering on and off for the last few days. My Brother went home around 8pm, still jet lagged. I watched a film, and wrote my diary, before going to bed around 00.15am. I was woken 12.35, by a nurse, telling me that Mum had died.
I had been writing in my diary, not half an hour before, that I was wishing that the end would come. I couldn’t bear for her to suffer any longer, and I couldn’t cope with my own suffering any longer.
My immediate reaction was relief, and sadness. But the relifef, oh, I can’t tell you. I was just SO relieved, that she no longer had to suffer, and that I didn’t have to suffer WATCHING her suffer. Somehow, I can see it would be so easy to feel bad about being relieved that your Mum has died. But I felt none of it. I just felt release, for all concerned.
OK, that is quite enough for tonight.
I thank anyone who reads this, for reading it. xxxxxxxxxxxxxxxx
So sorry that things are so hard Rae. It rings bells about how things went downhill with my Mum.
I hope you have a lovely week with him. I think company is what will serve him best right now, lots of loving company. So hard that your Mum has to work. Oh, so difficult this CC monster.
I’m so sorry that you are having such a hard time, and I hope that your visit goes well.
I know my Mum had light coloured poo prior to her resection, along with the jaundice, which was all caused by the bile not flowing properly. I’m not sure afterwards, I think it all went back to normal. Sorry, doesn’t seem very helpful.
So sorry to hear about your husband. You must both feel very scared. It is really hard to talk to people, but it’s good if you can. Here of course, you will read, is a good place to vent whatever you can’t get out elsewhere. But if you can pick just a couple of people in your everyday life to share this with, it will help you beyond belief. I wish you both well.
Thank you Stacie, looking forward to seeing the results of all your hard work!
I think Kris’s idea is BRILLIANT!! I am sure there would be many people here who would like to make donations.
Thanks for introducing yourself Colleen. I echo everything that everyone else has said, and I wish you and your husband and your kids love luck and strength. THis site is a great place to share. All the medical sites, whilst full of information, lack the human “touch”. I know when I was in the researchresearchresearch stage, finding this site helped me more than any “facts” or statistics ever did!
Sadly I lost my Mum to CC earlier this year. Coming to this site STILL helps!
Much love xx
Oh Jules. So SO sad to hear your news.
Everyone has said everything, so I will send you HUGE hugs.
I wish you strength to make it thorogh this awful time.
Your post today was a post I never wanted to read. You and your Dad have both seen so brave, and such a comfort to so many.
Oh love, big big hugs again.
Hope Patty is OK Ted. What a complication! We are all rooting for both of you! Hope the surgery is a success.
I hope all will be well cceloi. Do let us know.September 24, 2007 at 4:01 pm in reply to: Anyone with the disease have small kids (under 12?) #16763
Good to hear your cunning plans CDR. So glad you have all your family around, it must be a relief to know you can rely on them.
Hope you are doing OK TODAY!!
Much love x
I hope that the glimmer of light becomes dazzling for you all!
So sorry to hear about the loss of your Brother.
Sending some love your way. xxxxSeptember 21, 2007 at 9:46 am in reply to: Anyone with the disease have small kids (under 12?) #16757
What a nightmare.
Not trying to be defeatist or anything, but have you made cunning plans for the boy, in the event that the unspeakable should happen?
Oh man, makes me so sad to read what people have to go through.
Lots of love to you CDR.September 20, 2007 at 6:30 pm in reply to: Anyone with the disease have small kids (under 12?) #16754
CDR, your post made me laugh, the last sentence! Oh bless, kids are bloody hard work at the best of times! Have you friends and family who can give you a break? Does your boy know what is going on? Has he any idea? I’m sure you aren’t wanting to scare him, but at the same time I’m guessing he must understand that you are unwell? Is he playing up more than usual? It may be fear.
Wish I could help….but it would mean sticking him on a plane to UK!!
Hope you are OK!
Most of Mums were gone within 6 weeks, but she had to keep one on for 2 months, due to an internal leak of some description.