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What to Expect

12 years 10 months ago #11796 by wendy

My condolences on the loss of your sister, I'm sorry. Your story sounds familiar to me in many ways, I took care of my sister was she was dying of breast cancer. My other sister has bladder cancer, and she is still doing well after 9 yrs, thankfully.

We were not able to get my sister on hospice because she did not want to give up the TPN (liquid nutrition). We cared for her at home, she had many IV lines, the main one came out of her neck. The burden placed on the family was totally unethical, when I think back on it, and the toll it took on us all was horrendous. No family should be put in the position of bathing someone covered in skin mets and fungus, dealing with the constipation ( i was chief of that stuff), administering round the clock IV meds (steroids, pain meds, anti-nausea meds, heparin- what a mess it was). My life fell completely apart, collapsed during the 15 months she was ill, and my clinical depression led me straight to a breast cancer diagnosis in Dec. '99 (I had been in denial of what was going on in my breast). If not for my husband seeing the tumor, I bet I'd be dead now as it was already advanced.

Being a caregiver is extremely difficult; losing a sister is worse. In fact I feel that there is nothing worse than losing a family member because they are irreplaceable. We lost our father to cancer, I was 8. My mother re-married twice (with about 15 yrs in between them!), and both her husbands died of cancer, too.

My mother is still alive, chain smoking, having outlived so many of her friends and all of her family, her daughter and 3 husbands....and knowing that 3 out of 4 daughters got cancer. For her sake I have to be sure I stay in remission.

These experiences are part of the reason I became an advocate for bladder cancer patients. I respect your desire to get involved....the need for greater awareness of bladder cancer's signs, symptoms and treatments is big. Although I'm a breast cancer survivor, I chose to help bladder cancer on behalf of my sister and the other half million plus! Breast cancer has more than its share of websites started up by sisters of patients (Susan B Komen, for one), and tons of orgs and 'races for the cure' and so on...while bladder cancer was in the dark ages when my sister was dxed in '98. There was not one site on the whole web until WebCafe went up in '99, and we stayed the only site for blc until 6 yrs later! It's ridiculous, actually.

I'm sorry you did not get the support you needed, or were not aware I had walked a similar path with a sister, as I have so much experience, I could have told you what not to do, at least...as it went, it sounds like you were a great sister up till the very end, and that your sister's passing was a relatively good one.

I also know how awful it is not to say goodbye. I agree with your statements about the importance of saying what needs to be said and avoiding regrets. Sometimes that can be impossible, though, if the person is in denial about what's happening.

I hope that you find healing in the coming time. One thing about love is...it never dies, we continue to love those we've lost no matter how many years come and go. I've been lucky and have seen my sister in dreams now and then, they are like visits and I wake up very happy. She looks beautiful in those dreams, at her best. She tells me not to cry, that she's ok. It will be ten years in March since she passed.

Getting involved with cancer advocacy is a good way to channel anger, sadness and frustration. I know that my involvement has brought deep gratification, direction and meaning to my life when I felt totally lost.

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12 years 10 months ago #11767 by mssmr
Beachcomber -- Please accept my sympathy for your loss and my thanks for a glimpse of what might be expected. Yes, I am sure journeys differ a lot, but when I have come right out and asked physicians on my team -- "What sysmptoms might be expected to happen when and if I get sicker?" Or "What kinds of events just precede the deaths of people with the kind of bladder cancer I have?" -- well, you can see
it is painful for them and, while they do give some information, it is limited and
very tentative and full of warnings that people's cases vary.

I have stage 4 bladder cancer that has spread to live, lung, and bone. My diagnosis was at stage 3 last February. The first met was discovered in August, the rest in
November. Right now, I am feeling quite well most days but I have seen folks around me suffer rapid worsening with various cancer diagnoses.

Relating lovingly to family/loved ones is hard. On one hand, I want us all to be realistic about my prognosis. On the other hand, I do not want to have to "give a history" of every appointment, pain, change, etc. before anyone will talk with me about anything else. I tell then I'll report any really important new things,
but that I'd rather share news and memories than have to
relive my whole week for each of them -- "How are you feeling, dear?"

Right now, there is a positive "disconnect" between my inner peace, usually happy mood, and lack of major discomforts and the images of "my insides" with all those mets. I am trying to enjoy the good time I have now, but those who love me are
understandably somewhere on a continuum from worried to distraught and. I think, suffering far more than I am right now.

I am still in active chemotherapy treatment, by the way, with some blood count problems....

I hope that my attempt to share the perspective of someone (just one person) trying to both enjoy life and be sensitive to loved ones' angst is helpful to somebody.

-- mssmr

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12 years 10 months ago #11755 by Renee
My heart goes out to you for your loss. I feel so sorry that you didn't get the support you asked for. I remember your posts, and I thought of sending a reply. I didn't because I had the feeling that you were hoping for a response from a female cancer patient and secondly, I hesitated to share my feelings of surrender and acceptance and enjoying the time you have together when we are dealing metastasized cancer, because most people believe you have to fight the cancer. I am now sorry that I didn't respond.

I think there are some similarities in the progress of the cancer between my husband and your sister's situation, except for the chemo therapy. My husband (52) died just over a year ago, after just 10 months of cancer. He suffered complications after the RC and therefor he wasn't strong enough for chemo. The pathology report stated that the cancer had spread to five lymphnodes and in early August it had metastasized to one lung( 7 months after the first diagnosis). My husband didn't pursue chemo because of the chances of developing "chemobrain" and he wasn't sure, after reading lots of reports, that it would help in his case. It would have given him may be 3 more months, but at what cost? I believe it was the right decision.
It is very liberting to accept one's fate. This doesn't mean that one gives in or loses hope. On the contrary, hope comes in different forms and is always there till the end. By surrendering, the last few months became a remarkable experience for Hans and me.

In September he heard that the cancer had spread to the liver, the other lung and between the lungs. He fulfilled his last wish to fly over our city in a small 4-seater plane in mid-September and then went down-hill. He died on October 27, 2006.

On hindsight I never realized that his death was so near. The last week before he passed away he was admitted to hospital, and I decided to complete a renovation project which we had planned doing together (I hired an installer to lay the tiles in the front hall), to surprise him when I would come home. Furthermore, I worked as a consultant till the day he died, if I had known I would have done it differently. I think we just don't know and we do the best we can with the information that is available to us at the moment. Alao, it was a stressfull situation, and Hans deteriorated very rapidly... it was difficult to really understand and realize what was going on. I have regrets and sometimes they take the overhand, I then acknowledge them and continue my journey through grief.

I agree fully with "hug those that you love and tell them how you feel about them".
Hans wrote a good bye letter to family and friends and the last paragraph read as follows:"My wish for you all then, is that you’ll find your own smile and harmony in your heart. There was a time that it was popular to say that life is a bitch. I would like to add that a bitch can have beautiful puppies. So find your loveable puppies in life and nurture them with unconditional love and dedication.
Don’t postpone your love, show it now. Don’t postpone your compassion and ability to forgive, act on it today".
I like to give you a big hug in this difficult time and I will think about you during this holiday season. And I hope you will get some comfort from the people that surround you while you journey through your grieving.
Take good care and thank you for sharing your thoughts,

P.S. We have a forum on "Dealing with Grief and Loss" you may like to join.

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12 years 10 months ago #11749 by Gene Beane

I am so sorry for your loss. Many on this forum have stage 4 metastisized bladder cancer. I will look back and see what response you received from the forum but its hard to believe you weren't given some form of help and advice for her situation. I respectfully am sorry if we overlooked your plea for help. I can relate to your not being with her when she passed, I also missed out on my dads passing as I thought I had another day and missed it by 10 minutes. He was at hospice as well. I only left to get a shower etc. then he decided it was time. This experience is overwhelming and remains in your mind for a long time, it will get easier as you go along but very close to your reoccurring memories. Its a shame some don't find it sooner rather than later, many right now are living day by day on the forum, going thru chemo and treatments to save there lives for as long as they can. Your story is repeated over and over where one is given anti-biotics and forgotten, this is so maddening as many that this happens to are now stage 4. And there are thOse who won't push themselves on Doctors to check it out thourghly, but it is the case, you have to fight for yourself,,or all is lost. It shouldn't be!!!
Its great you will be a awareness advocate, we need so many, put out the word, blood in the urine means test for cancer, even frequent urination etc. I wish you a happy holiday, and hope 2008 is a better year for you !! Ginger Beane

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12 years 10 months ago #11744 by Beachcomber
Earlier this year I posted a message seeking advice about what to expect in my loved one's journey with Stage 4 bladder cancer. Truthfully, I didnt get much guidance, and I rationalized it as the group's saying that everyones journey is different. While everyone's experience may be different, it might have helped me to read about these other experiences.
My dear loved one passed away 4 weeks ago. Her death certificate indicates that Metastaic Bladder Cancer was the cause. A contributing factor noted on the certificate is smoking (which she quit over 20 years ago) which was quite a surprise. She had told me that smoking was a believed to be a contributor, but seeing it on the form made it real. I still cant believe that she is gone.
I wanted to leave this message so that others, who like I was, are in search of examples of what to expect. Her is her/my story.
She started Chemo last spring, and unfortunately, I cant remember the names of all fo the drugs. She was supposed to have two consequtive weeks of chemo and then a week off. She could not tolerate the chemo (blood counts dropped) so they had to take a week off before the second chemo. After the second chemo, her blood counts dopped so badly they had to do a blood transfusion. There were supposed to be three series, and she was only able to tolerate two. At the end of this, they did a scan and found taht the cancer (in the lymphs in the chest) had not increased in size, but had not decreased. She then started on a second set of chemo (different drugs), and had the similar experience with her blood count. At the end of this series, they did another scan and found more cancer but that some of the cancer had not increased... so she started a third type of chemo. With this chemo she was able to tolerate three consequetive treatments.
Three weeks before she died, my she went to see her onacologist, as she was in pain after the three weeks of chemo. Her blood counts had dropped and they were giving her infusions of red blood and something to help her energy level. The pain was attributed to the drugs trying to get her bone marrow to produce and bring her counts up. Her body hurt so much she would cry out in pain and she wanted to sleep/rest most of the day. She visited the Dr to asked what they could do to help. The Dr said that they were going to stop the chemo, as her blood counts had dropped again, and that there was not much else they could do to help her. That was on a Monday. She was feeling somewhat better toward the end of the week, but then that weekend, she started to hurt again. I noticed that her hearing was starting to fail, and she was having trouble breathing (which earlier had been attributed to the poor blood count). The Dr got her started on oxygen... and from here her life seemed to really go down hill. She never seemed to get enough oxygen.
That next weekend she left the house for the last time to go to a friend's birthday party. Middle of the week, the Dr referred her to hospice. The hospice people are angeles. They arrived and brought things to make her remaining days easier. I live at a distance, and had planned to be a caregiver. However she said that she didnt want me to be there but to come the following weekend. She died before I could get there.
The hospice nurses were there 24-hrs a day, and helped her with awful constipation. They also got her started on Morphine to relieve the pain. The day she died, she ate a small breakfast and lunch, but was not hungry for dinner. I talked to her every day, except the day she died as I had NO sense that the end was so close. Our last conversation was good, her voice was strong, and I and the nurse thought she was having a good day and maybe was slightly better. I was to arrive the next day. I know that she was tired of living with cancer and I believe that she willed herself to die. She lived with the cancer diagnosis for 9 months. My independent research on the web told me that she might only live 6 months after the diagnosis - but after 6 months she was still leading a near normal life. She didnt give up, at least not in the conventional way but rather I think because she passed so quickly, that she decided that death was better than living with the cancer. Unfortunately, I was not there with her and while I am angry at that, I am unbelievealby grateful to hospice to allow her to die in the comfort of her home and with minimal pain. She is now in a better place. We had her funeral four days after she passed away.
My earlier message to this forum was a desparate attempt to find what others may have found successful in dealing with this awful cancer, and more importantly, what to expect knowing that with Stage 4, its just a matter of time. The advice that I would give to anyone else.... drop everything in your life and go to your loved one as soon as they are Stage 4 and stop treatment. I didnt get the chance to say goodbye but I know she knew how loved she was by her family. In her case, I didnt know that she was so close to death, as my only "experience" is what I saw on TV. Having just seen the movie 2-weeks, I figured I had at least a week, and some, friends said that I might have as much as 6 weeks. I can't get that time back but can offer advice to others to say, dont do it the way I did. I know that I did what I could based on what I knew. I think she wanted to spare me, so she didnt tell me everything. It didnt spare me from loosing her and it didnt let me be there to say goodbye. I know that this is selfish.
My wishes to others, during this holoiday season -- hug those that you love and tell them how you feel about them. For 2008, I am going to devote my time to raising awareness about this awful form of cancer and to raise funds for research. I hope that others will join me. Thanks for letting me vent and to hopefully help someone else.

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