Not too good. We have a one day conference about CLL on Saturday. I hope to learn more about living with the condition and how to manage the symptoms (which are increasing) there. I hope I feel well enough to attend!
Mrs RR and I recently attended an all-day CLL (chronic Lymphocytic Leukemia) support conference in Cambridge. Good location, nice food, excellent presentations. BUT (and it's a big but) despite thre being no cure for CLL, the whole emphasis was on invasive intervention and treatment. I was, I confess, expecting some sort of emotional support and advice on how to manage the symptoms and live with the condition. In my pastoral experience what really helps folk is the notion of 'healing' where there is no cure. Of this there was no hint. Have people lost this spiritual insight? Was this topic not thought sutable for discussion?
I tried to gently probe sufferers and supporters in a group, but got nowhere. Very disapponting. I'm thinking or starting a 'Christian CLL support group' ... Not many C of E folk though, would join. Even our beloved Rector eschews emotion!
Help!
When Mr F was first diagnosed with myeloma, I joined an online support group. And then almost immediately unjoined. I decided I didn't actually want to know about the range of possible problems and outcomes.
There have been times in the eight years since when it's been tough going. But in the event it's been a few friends who've been prepared to listen who've helped most.
When Mr F was first diagnosed with myeloma, I joined an online support group. And then almost immediately unjoined. I decided I didn't actually want to know about the range of possible problems and outcomes.
There have been times in the eight years since when it's been tough going. But in the event it's been a few friends who've been prepared to listen who've helped most.
We have a cancer resource organization associated with a large cancer centre near here that runs a peer mentor program. You can ask for a mentor who has experience of a similar cancer, or just experience of particular treatments, and an informal - often long lasting - relationship is often developed. It's easy to end it if it's not working. I like this better than the group activities, and I wonder if there might be something similar in your area? The mentors are screened carefully and there are strict rules about not giving medical advice, of course, but being able to compare experiences seems to work quite well. We mostly communicate by phone, sometimes e-mail, and meeting on neutral territory like a coffee shop is allowed.
I just realized that today is the second anniversary of my cancer diagnosis. I have been so lucky and blessed in my support and in my medical team, and in the outcome. And thank you everyone on this thread. I even forgot to post that I had my annual mammogram and sonogram recently, and the results were good. No new cancer.
Anecdotal admittedly but my local market has a cancer advice stall. We also run a Parish Nursing stall there. Guess where the advice stall send people for emotional support.
When Mr F was first diagnosed with myeloma, I joined an online support group. And then almost immediately unjoined. I decided I didn't actually want to know about the range of possible problems and outcomes.
They can be a hard read. I joined a dementia support one when my mother had it, read some of the posts and was horrified enough to back out and not go back for some time. But when I did it was quite useful. Not just because other people were coping with similar things but because of the ways they were finding to work with/around them. And the help with figuring out the complexities of the bureaucracy and form-filling that go with medical stuff.
I'm sorry about your brother. There really is far too much that can go wrong with the human body.
Well, here goes. My mother, who I talked about about three years ago when she was going through her chemotherapy for breast cancer, is back again, this time for pancreatic cancer. This was caught early-ish, but not until it had filled the bile duct and blocked it completely. They can't operate because of its proximity to various main blood vessels, so she's back on maintenance chemo. This is leaving me with a huge number completely unanswerable questions, which I'm trying to answer while feeling completely judged and ostracised.
The strains on the family are just multiplying, as you can probably tell. I don't know how to break the apparent consensus and raise the possibility that the chemo is doing more harm than good. I don't know how to raise the fact that I don't want to lose my mother before her body finally gives up, but I'm afraid I already have. I feel like a scapegoat for a family which has been driven out of its collective mind by three years of my mother's cancer struggles and my niece's hideous mental health adventures. I'm a safe target. Apparently. Except that I don't feel very safe at the moment.
I'm sorry, this is more about me than anything else. But it is a definite instance of cancer sucking, and the way that its effects continue even after the treatment appears to be over. And it can come back for those who escape.
Everything to do with me and my family seems irretrievably fucked.
Thank you @North East Quine . Prayers for @Firenze and all caught in cancer's web. The idea that this is, or will be, half of the population diretcly is really not all that cheering.
Good news Mr. Image appears in no pain and here a year longer than anyone thought. Bad news as of yesterday he can no longer stand which makes all things difficult. Dressing, bathroom, cleaning, and getting out of bed into a wheelchair. Mrs. Image is feeling a bit overwhelmed today.
Gee, they sent a social worker today to see what aide we might qualify for. Everything she suggested that we do, quality for we do not I have done my research. An example The VA will cover that. No, you are wrong to get that grant the veteran must been made ill because of military service. I have been to the VA office. I found one place where I can get a small short-term grant for which I have applied. I was able to tell her about this grant she had never heard of it. I could have done her job, in fact, I am. The good news is because hubby needs an electric lift bed our electric bill will be discounted. She did not know that. I hope at least someone will benefit from the training I gave her today. I was upset because hospice had said we are sending our social worker and she will be able to give you resources for help, so my hopes were up, not that I am upset that there are no resources but rather that she was so uninformed. Rant over thanks for listening. I am just tired and it helped to write this.
Supposed official 'help' at its worst, @Graven Image. Yes, maybe others will benefit from your training this person, but that's no comfort now to you. I hope you can call on unofficial resources to meet your real needs.
Very understandable that you're tired. You've got all the day-to-day burdens on top of the emotional strain. Our very great sympathy. It's good that you're getting assistance in the form of the discounted bills - it may not be much but it's a start and gives you a point of reference when talking to other agencies.
Gee, they sent a social worker today to see what aide we might qualify for. Everything she suggested that we do, quality for we do not I have done my research. An example The VA will cover that. No, you are wrong to get that grant the veteran must been made ill because of military service. I have been to the VA office. I found one place where I can get a small short-term grant for which I have applied. I was able to tell her about this grant she had never heard of it. I could have done her job, in fact, I am. The good news is because hubby needs an electric lift bed our electric bill will be discounted. She did not know that. I hope at least someone will benefit from the training I gave her today. I was upset because hospice had said we are sending our social worker and she will be able to give you resources for help, so my hopes were up, not that I am upset that there are no resources but rather that she was so uninformed. Rant over thanks for listening. I am just tired and it helped to write this.
Yes, super frustrating. I am sorry and hope you somehow run across someone competent who actually has realistic suggestions. Is there by any chance a local senior agency that could help? We have one composed of about 5 churches that has a properly trained social worker on staff for this sort of thing, and so far she's been correct when I've checked her.
I have found the local senior agency helpful indeed. They are the ones giving me the small grant. I am going to keep looking on my own. So far my research has not turned up anything but at least I know what is going on more than social worker. Feeling better about it all this morning.
The more perceptive shipmate will have noticed I'm posting rather more these days. This is bbecause the wretched leukemia (and perhps the heat) predicates I have two preffered activities: lying down and sitting up. The latter is prefferable as at least my brain (such as it is) is engaged.
But, by gum, I feel so ill .....
But of good cheer! 'Compassionate Cheerfulness' keeps me going .... and someone needs to feed the cats .....
I do not believe Mr. Image will be with us much longer, He is sleeping 23 hours a day now, eating and drinking a little. Thankfully pain seems well controlled. Praying for a peaceful passing.
Comments
Blessings and prayers for all.
I tried to gently probe sufferers and supporters in a group, but got nowhere. Very disapponting. I'm thinking or starting a 'Christian CLL support group' ... Not many C of E folk though, would join. Even our beloved Rector eschews emotion!
Help!
There have been times in the eight years since when it's been tough going. But in the event it's been a few friends who've been prepared to listen who've helped most.
Thank you and bless you.
They can be a hard read. I joined a dementia support one when my mother had it, read some of the posts and was horrified enough to back out and not go back for some time. But when I did it was quite useful. Not just because other people were coping with similar things but because of the ways they were finding to work with/around them. And the help with figuring out the complexities of the bureaucracy and form-filling that go with medical stuff.
I'm sorry about your brother. There really is far too much that can go wrong with the human body.
The strains on the family are just multiplying, as you can probably tell. I don't know how to break the apparent consensus and raise the possibility that the chemo is doing more harm than good. I don't know how to raise the fact that I don't want to lose my mother before her body finally gives up, but I'm afraid I already have. I feel like a scapegoat for a family which has been driven out of its collective mind by three years of my mother's cancer struggles and my niece's hideous mental health adventures. I'm a safe target. Apparently. Except that I don't feel very safe at the moment.
I'm sorry, this is more about me than anything else. But it is a definite instance of cancer sucking, and the way that its effects continue even after the treatment appears to be over. And it can come back for those who escape.
Everything to do with me and my family seems irretrievably fucked.
I surely hope you have good help.
Adding my prayers too
Good to hear this and hope it enables you both to have more quality time together
I'm so pleased for both of you!
Yes, super frustrating. I am sorry and hope you somehow run across someone competent who actually has realistic suggestions. Is there by any chance a local senior agency that could help? We have one composed of about 5 churches that has a properly trained social worker on staff for this sort of thing, and so far she's been correct when I've checked her.
But, by gum, I feel so ill .....
But of good cheer! 'Compassionate Cheerfulness' keeps me going .... and someone needs to feed the cats .....