Niece update - good news
My niece had her surgery at lunchtime, but they had to wait for
the surgeon to get all his other operations done and tell them what he'd done. Interpreting vague
clues from people who don't know what they're talking about, I'm fairly certain that she had a
mastectomy (not a lumpectomy), and she also had an unspecified number of lymph nodes removed from
her armpit. The surgeon has told them that he has got rid of absolutely everything that needed to
go. Nobody deserves a mastectomy, but it got the result that everyone wants. They will now decide if
they will follow it up with chemotherapy, radiotherapy, or both.
My sister-in-law was feeling very isolated, as well as terrified, and was grateful for my phone calls. She stopped working at the beginning of September, and was at home with just her youngest, a boy of 17, for company, but he's been glued to the computer, playing Runescape. He's been glued to the computer, playing Runescape, for the last three years, and very little can stop him. He answers the phone, you think you're having a conversation, but you can still hear the keyboard clattering away.
She wants to get on the computer and search for information, but she doesn't want to ask him to stop to let her on, in case it upsets him. She's been driving herself mad googling for information. (I told her to look at the Breast Cancer Care site, which is a sort of one-stop shop for everything from basic information to support forums.)
Her second child has nobody to talk to now. Since she told her friends and neighbours that her sister had cancer, they've all been avoiding her. I imagine it's the old "I don't know what to say" chestnut. It can't be because they think it's catching. So now my SIL is scared to tell anyone in case she gets ostracised too. Imagine having to deny your child to keep your friends. I don't think they'd be worth keeping.
All hell has broken loose since the diagnosis. Her sisters, who are all in their twenties, have gone from total ignorance to blind terror. Normal scanning in this country is every three years after the age of 50, but they have been told that more help will be forthcoming if they go for genetic testing, which can only be done privately. SIL wanted to discuss it with me, but I don't think I can discuss it, because my circumstances and criteria are very different from theirs. I told her what I'd do, and why, but they will all have to make their own decisions, with no input from me or anyone else. "Ah yes," she said, "the doctor said that: some people want it and some don't."
I told her they're all welcome to phone me if they want someone to bounce off or shout at, but I wouldn't attempt to give them advice. I would only listen. I also reminded her that men can get it too. It's generally regarded as a women's disease. It isn't. She didn't know that.
How long, I wonder, before someone suggests prophylactic surgery? It makes sense. If you have a 99% chance of getting breast cancer, have a double mastectomy. No breasts, no breast cancer. Sorted. And barbaric. IMHO.
In the afternoon, I rang the hospital, found out which room she was in, and asked if patients can have flowers. A lot of NHS hospitals now say no flowers, partly because visitors turn up with bunches of cut flowers and give them straight to a nurse to deal with, but the nurses haven't got time to mess about with vases (or enough vases), and partly because, they say, flowers are an infection risk, which is probably just an excuse they know you can't argue with. Yes, she can have flowers. Tomorrow, she will probably be able to take phone calls.
SIL brightened up when I said I'd rung the hospital, although she was disappointed that I hadn't asked any questions about my niece. I can't ask questions. An aunt is not close family when there are parents, siblings, a husband and children. She'd been scared to because she'd been frightened of the answers she might get. She also said she couldn't bring herself to visit because her daughter would be full of tubes. So I put my best stern voice on and said you won't see the tubes - you'll just see her. Anyway, this isn't about what you want. It's about what she wants, and what she needs.
She sounded considerably brighter when she rang me later with the good news from her son-in-law. She and my brother will visit tomorrow.
She said that her son-in-law has been in the hospital the whole time, but the children are staying with their aunts, and won't be visiting. She doesn't want them to see her, and says they're too young to understand (the oldest is ten), so she's telling them mummy is having a little operation on her tummy. Three aunts are having one child each. It's what the parents wanted, she said. Jonathan and I disagreed with every part of their decisions, but I didn't tell her that.
I did say I thought that, with both parents away, the children would want each other, and would feel even worse for being separated: that they would want to see their mother, and it would do her the world of good to see them, but SIL said none of this mattered. "So they'll suffer a bit for a week. It doesn't matter. What matters is that my daughter is alive and well."
Illness is never simple, is it? All human life is here.
My sister-in-law was feeling very isolated, as well as terrified, and was grateful for my phone calls. She stopped working at the beginning of September, and was at home with just her youngest, a boy of 17, for company, but he's been glued to the computer, playing Runescape. He's been glued to the computer, playing Runescape, for the last three years, and very little can stop him. He answers the phone, you think you're having a conversation, but you can still hear the keyboard clattering away.
She wants to get on the computer and search for information, but she doesn't want to ask him to stop to let her on, in case it upsets him. She's been driving herself mad googling for information. (I told her to look at the Breast Cancer Care site, which is a sort of one-stop shop for everything from basic information to support forums.)
Her second child has nobody to talk to now. Since she told her friends and neighbours that her sister had cancer, they've all been avoiding her. I imagine it's the old "I don't know what to say" chestnut. It can't be because they think it's catching. So now my SIL is scared to tell anyone in case she gets ostracised too. Imagine having to deny your child to keep your friends. I don't think they'd be worth keeping.
All hell has broken loose since the diagnosis. Her sisters, who are all in their twenties, have gone from total ignorance to blind terror. Normal scanning in this country is every three years after the age of 50, but they have been told that more help will be forthcoming if they go for genetic testing, which can only be done privately. SIL wanted to discuss it with me, but I don't think I can discuss it, because my circumstances and criteria are very different from theirs. I told her what I'd do, and why, but they will all have to make their own decisions, with no input from me or anyone else. "Ah yes," she said, "the doctor said that: some people want it and some don't."
I told her they're all welcome to phone me if they want someone to bounce off or shout at, but I wouldn't attempt to give them advice. I would only listen. I also reminded her that men can get it too. It's generally regarded as a women's disease. It isn't. She didn't know that.
How long, I wonder, before someone suggests prophylactic surgery? It makes sense. If you have a 99% chance of getting breast cancer, have a double mastectomy. No breasts, no breast cancer. Sorted. And barbaric. IMHO.
In the afternoon, I rang the hospital, found out which room she was in, and asked if patients can have flowers. A lot of NHS hospitals now say no flowers, partly because visitors turn up with bunches of cut flowers and give them straight to a nurse to deal with, but the nurses haven't got time to mess about with vases (or enough vases), and partly because, they say, flowers are an infection risk, which is probably just an excuse they know you can't argue with. Yes, she can have flowers. Tomorrow, she will probably be able to take phone calls.
SIL brightened up when I said I'd rung the hospital, although she was disappointed that I hadn't asked any questions about my niece. I can't ask questions. An aunt is not close family when there are parents, siblings, a husband and children. She'd been scared to because she'd been frightened of the answers she might get. She also said she couldn't bring herself to visit because her daughter would be full of tubes. So I put my best stern voice on and said you won't see the tubes - you'll just see her. Anyway, this isn't about what you want. It's about what she wants, and what she needs.
She sounded considerably brighter when she rang me later with the good news from her son-in-law. She and my brother will visit tomorrow.
She said that her son-in-law has been in the hospital the whole time, but the children are staying with their aunts, and won't be visiting. She doesn't want them to see her, and says they're too young to understand (the oldest is ten), so she's telling them mummy is having a little operation on her tummy. Three aunts are having one child each. It's what the parents wanted, she said. Jonathan and I disagreed with every part of their decisions, but I didn't tell her that.
I did say I thought that, with both parents away, the children would want each other, and would feel even worse for being separated: that they would want to see their mother, and it would do her the world of good to see them, but SIL said none of this mattered. "So they'll suffer a bit for a week. It doesn't matter. What matters is that my daughter is alive and well."
Illness is never simple, is it? All human life is here.
10 Comments:
Thinking good thoughts for your whole family, Lesley. Breast cancer runs in my family as well. So far my mom's mother and aunt have had it (as well as three second cousins), and my dad's aunt and sister have as well.
And I agree that the preventative double mastectomy is a tad barbaric. I can't imagine doing that, but then again I've never been told I may well be very sick in the near future. Maybe in 10-20 years I'll feel differently.
By guitargoddess, Sep 14 09 6:38 PM
Thanks, GG. Perhaps if my family had the genes that could give you it at thirty I'd feel differently too. I'm now past the age my mother was at her first diagnosis, so I'm more relaxed about it. No point spending your life in a black cloud.
It sounds like your relatives, like mine, aren't developing it till they're older, and getting it at 60 is better than getting it at 30 but not as good as not getting it at all.
By lesley153, Sep 14 09 6:55 PM
Well it has flucated a bit in my family - my grandma was around 65 when she was diagnosed, my dad's sister was 38. The other relatives were late '40s or in their '50s I believe. My mom and her sister are hovering around 50 now, and are clear so far though, so I guess we'll just hope for the best and see what happens..
By guitargoddess, Sep 14 09 8:20 PM
That's a big age spread. But you're younger than any of them, and you have been told about it, which I think is valuable.
I found out that my nieces didn't know a thing about my (and their father's) family history when I chatted to them about five years ago, but I didn't know about my sister-in-law's either. I asked her if her daughter knew. "Oh yes," she said, "I told her as soon as she got her results."
I can't help thinking that's a bit late - that it might have helped her to know about it before she got the diagnosis, and she might have realised what it was before it started moving onto her lymph nodes. And maybe it wouldn't. But I didn't say anything to my SIL.
By lesley153, Sep 14 09 8:44 PM
Your family is doing what they feel is best, but I am so sad for those 4 kids! You're right, Lesley - at a time like this, they need each other. Very wise (and loving) of you to offer an ear to listen without giving advice. Emotions are too highly charged now and disagreements can turn into rifts in the family. You are doing the right thing. I will keep your family in my thoughts and prayers.
By bionic4ever, Sep 14 09 8:54 PM
Thank you, Beth. I know that grief and fear make people say unforgivably stupid things, and I also know that if I tried to tell them what to do, I'd get the same frosty reception from them as people get from me when they try to tell me what to do.
So I'm doing what I do best: listening, and biting my tongue. In fact, I've spent so many decades doing that, my teeth know where to go without being told.
By lesley153, Sep 14 09 9:34 PM
lol Lesley! Yes families are Such Fun! (some times.......)
Here we screen from 30 onwards if there is any family history - although a friend was diagnosed at 23 with no family history.
She is now late 40's and had two more children after diagnosis.
Normal screening kicks in at 50 for females - ( I'm unaware of any programme for males..) but most GPs will arrange screening anytime if the patient is 'experiencing pain'!
I think listening well in such circumstances is productive for the talker and Much Safer for the listener! ;)
And you are always a good listener.
Having said that - when you speak your mind on a topic I find your point of view refreshing and without bias. :)
By MarchHare007, Sep 14 09 11:05 PM
I hope your niece's recovery is uneventful and complete and that she's soon home with her family.
(I wish my sisters-in-law had your diplomatic skills!)
By tobyone, Sep 15 09 8:22 AM
Looks like everyone is dealing the best way they can. I'm sorry but not asking a 17 year old off the computer in circumstances like that seems like a cowardly act. And to not go see her daughter, that's absurd. I'm glad they all have someone wonderful (you) to go to for things. I agree with tobyone, your diplomacy skills are amazing. How are you doing??
By rayven80, Sep 15 09 10:41 AM
Thank you everyone for more support and a raft of compliments. *blushing*
I think not asking the 17yo to let her use the computer just adds to her general feeling of martyrdom.
I wish my SIL even knew what diplomacy skills were! I've just come up for air after about five hours on the phone. When I get my breath back, I shall do a cheerful update.
By lesley153, Sep 15 09 5:27 PM