Brain Mets Sisters
Comments
-
Jenn how very frightening to wake up in the hospital. I am glad you are out of the hospital. You sound good about your new home team which is a relief. I am so sorry for the wobblier feelings and I am very glad you got a chance to post. Please keep posting and we are here for you hugs to you.
Anne
0 -
jenn.. I am happy to see you post... and will include you in my thoughts and prayers.
stay strong.
0 -
Ah, Jenn, what a terrifying way to wake up. What do the docs say? I hope the hospice folks are able to quickly pull you out of this and get rid of the wobbles. Sending giant hugs from Texas. Paula
0 -
Jenn, I am so happy you're home. Hospice is wonderful. I wish you the very best! Hugs Jodi
0 -
That squirting sounds like an exciting experience, Lassman! Pleased for you that it has relieved your symptoms and hope the doctors' attack on the mets is successful.
Barbara
0 -
Jenn3 - everyone in the TN thread has you in their prayers and thoughts
0 -
- Jenn3 - I'm so sorry you're having it so rough. Hoping that hospice care will make you feel better!
- Lassman - Wow! what an experience! Sending gentle hugs!
- Reneepal - Congratulations! Let's hope the treatment gives you a very long break!
- To All My Brain Mets Friends - Hang in there!
0 -
So sorry to hear you had scary stuff going on Jenn.... glad the hospice people were great. I'll be thinking of you....
And Lassman..YIKES!!! Glad it worked out for the best...
One tip from the neurosurgeon that I like so much...she said you can put your weight on whatever you feel comfortable with..walls, counter, etc. and just stand on one foot and then the other..that hopefully the brain will start re-wiring if it needs to, and it's another way to exercise! I figure WTH...no risk in that!
0 -
Dear Jenn, Thank you for posting. I wish we could come to your side. Much love and hope for your comfort and peace of mind.
Kathy
0 -
Lassman I have never heard of such a thing.. glad it was able to work for you.. hang in there.
0 -
Hey all. Here are two things to make you smile, I hope.
We do not slur. We are talking in cursive.
Using your less dominant hand, increases your brain power. I almost forgot the second one.
0 -
I am sorry, I know this blog is specifically for Brain Met Sisters so if you don't have time for the sister of a Brain met sister, stop reading....... I posted this earlier to the "caregiver" site, but have had no response.... any help advice....
Hi, I am not sure where to post this question. I know there is a special Stage 4 thread and as special thread for Brain Mets, but out of respect, I think it is just for people with Stage 4 and Brain Mets. I am the sister of a 33 year old with Stage IV breast cancer, diagnosed 2 years ago, mets to bones, was the initial diagnoses. In March the mets spread to brain and reocurred in her breast. She under went 10 days of WBRT. She continued working through WBRT at a stand up very active job. And last Friday she had a double mastectomy and reconstruction. She has been exhausted with no appetite since. We are just past 2 months of WBRT. And from what I have gathered, most people only live 3-6 months after WBRT. So my basic question is this. Is she so out of it because the WBRT is finally cathing up with her? Is in becuase of the doulbe mastectomy? Or is she starting to die. From what I read the dying process is 1-3 months. Before going in to the surgery, she believed she would recover quickly, enjoy her summer and we had trips planned... Also believed she would live a long and healthy life. There has never been any talk or mention of hospice or end of life care. I don't know what to do to be there for her.
0 -
blimey i hope that aint the case...i have plans as well...best thing i was told was NEVER GOOGLE most info is out of date....
evening/ afternoon/morning ladies.....down to 1 head fizzing pill a day now and taking it mega early so by afternoon im almost normal feeling...well..lol...
how long does it take for the helium head to go down...im normal size now from neck down just me bloomin face..(' ')
got me 2nd chemo thursday morning do enjoying a normal week this week with the kids before i reclaim the sofa at the weekend..:)
hope your all doing well and enjoying the jubilee and sun...xx
all the breast
tracy..xx
0 -
Hi goldengirl
Well...... Where to start!.......
I really don't think the 3-6 month prognosis is true for brain mets women nowadays. Google is a terrible thing :-(
Many of us have been around for much longer than that and I think most of us are planning much longer still. I am a year past my diagnosis and I am in contact with women who are 2,3 and 4 years past theirs. Someone mentioned on woman who was 15 years past a liver and brain mets diagnosis - I'd like to meet her!
I think it unlikely that your sisters medical team would be prepared to carry out a double mastectomy and reconstruction if they felt she had only a few months/weeks left to live.
I had gamma knife rather than WBR but my understanding is that it can take a long time to recover from it - months rather than weeks. The fact that your sister worked through her treatment is very impressive but probably made her even more tired. It might mean that she needs even longer to recover from it now.
As far as her surgery is concerned a double mastectomy and reconstruction is MAJOR stuff! In the uk she would probably be kept in hospital for about 10 days after. Of course she's going to be exhausted and lacking in appetite only 3 days after. She's probably pretty depressed too, general an aesthetics can do that + she got the shock of all that's been going on since march just beginning to sink in. Maybe you should have a read through some of the mastectomy/reconstruction threads to find out more about how long it takes women to recover from the surgery
I don't want to sound mean but it does sound as if you are putting quite a lot of pressure on your sister to get better very quickly - 'So my basic question is this. Is she so out of it because the WBRT is finally cathing up with her? Is in becuase of the doulbe mastectomy? Or is she starting to die' (!!)
I expect that you are very scared for her and you just want her to be 'all better' but to be honest that's really not very helpful for her at the moment
I would suggest that the best way you can support her right now is to be very gentle. If she is tired then that's ok, if she doesn't want to eat much then maybe try to tempt her with tiny bites of her favourite treats. Trying to encourage her into getting up and about to quickly or back to eating normal sized meals etc is simply going to be too much.
You know your sister best, but when I was recovering from surgery or brain met treatment I felt overwhelmed when people suggested activities. I know they meant well but it all seemed a bit scary to me.
You may have planned trips and exciting things this summer but be prepared for her not to be up for it at the moment (maybe late summer/autumn?) perhaps you could plan for some small, gentle days out that can easily be changed or cancelled if necessary. Maybe she would like it if you spent some summer days outside in the fresh air in comfy chairs with good books, just the 2 of you. It can be very comforting to have someone with you that is happy for you both to do nothing, I loved it when my sister came over and did that with me. It might help her to get better if you don't push her to much.
finally, does your sister have a friendly nurse as part if her care team? They can be very helpful. You might want to talk to her (with your sisters permission) about her thoughts on your sisters recovery and how you can best support her.
Hugs
Melissa0 -
Hi All,
Just realised that It is now 3 years since my original BC dx in May 2010 and one year since brain mets dx (although onc believes they were probably there since the get go. Only goes to show you can't believe the stats.
Once i have recovered from my latest brain swelling epsisode, it looks like SRS to the Cerebellum, followed by more Gamma to top of my head. Not sure if it will work but don't know until you try do you.
Jenn - sending you thoughts and best wishes from very damp England.
Lassman
0 -
she needs some time to heal golden girl.. all those treatments are very invasive and hard to handle. I feel almost 100% back to normal after WBR in April.. and chemo. WBR really requires that one get lots of rest. it's very fatiguing. I bet she'll feel pretty much back to normal soon.
0 -
Jenn,
Sorry to hear things are difficult for you just now - you've had a big shock waking up in hospital after that seizure. Glad they let you home and hope they can reduce your unsteadiness from its present level. I have nothing helpful to say other than that I had missed your post when I commented earlier and I'm really sorry for that - I'm sitting here quietly thinking of you and wishing good thoughts could travel.
Barbara x
0 -
Dear GoldenGirl, I would suggest everything Melissa says. You sister has been through A LOT. I know how rough it can be, being the sister. I have 5. They have their own fears about me and my future. I wish you and your sis the best. Love and peace. Jodi
0 -
Apple is right. Rest rest rest.
0 -
16 more sleeps till Aloha!!!
0 -
thank you for all of you support, i do need itl we spoke to hospice this morning and they are going to try some anti dizzy medication. hopefully that work so that I can get around more.
jodimomoffour-sounds like vacation is comimg up soon - have a GREAT TIME!!!!!
0 -
To Jenn, oxoxoxoxxoxoxxoxoxxoxxo
0 -
Jenn - I really hope they can sort out you wobbles. I felt wobbly when I was at the top of the stairs yesterday and fell all the way to the bottom. Wobbly/dizzy is not only unpleasant and worrying it can also be very dangerous. Please look after yourself and be careful. Hopefully the hospice team will scoop you up and make things much easier very soon
Tracy - the last time I had steroids my 'helium head' really looked at its best during all our holiday photos, the fact that it was hot so I had a sunburnt nose and a shiny face really added to the overall look! I'm afraid those photos have all gone in the bin (although someone did suggest that I might try photoshopping some of them so they could go into an album for the kids)
I think it took another 4 weeks after I finally stopped the roids for my face to go back to normal
Lassman - hope you didn't leave a big mess, I'm going to be there in a couple if weeks, don't fancy wading through it before being looked at!
Seriously though sound pretty scary. Hopefully it's made you feel loads better and the next treatments can zap the b***ers so that you can have a nice long break from treatment.
I've had a lovely day in the Cotswolds (we have a cottage here). Pottered around with dd and big sis. Lovely frothy coffee this morning and scones with homemade jam and cream for afternoon tea mmmmm !!
Currently lying on the sofa with dog, dd and sis all snoozing round me :-)
Big hugs to everyone
Mxx0 -
Wow what a thread we got going here. Shame there are so many of us here but what the hell, gotta make the most of it.
Lassman - scary stuff but so good the shunt sorted things out and hope you'll be back there zapping the little buggers again soon.
Jenn - sorry to hear things are rough for you at the moment but good you got to meet the hospice folk who will no doubt be able to sugest a whole load of stuff to get your symptoms under control. I canonly imagine how scary waking up after the seizure must've been. Hope you're family are all around spoiling you. Big hugs. xxx
Jodi - I'm getting greener by the day as you're counting down!
Renee - Glad to hear it's all done and hope you get a good break feeling well.
Paula - Sounds like you are going for it with the PT and hope it sorts out some of those damn wobbles.
Tracy - I'm also down to 1 head fizzing pill per day which is so much better than the amount before - actually getting in some sleep before 4am! Sitting on the couch watching the jubilee concert and wondering who's working Cliff Richard these days!
Goldengirl - great advice and comments from the experts on here. Give your sister support and time and do things at her pace. When you're knackered - you are completely knackered. Not just a little bit tired - it can be completely overwhelming.
Melissa - Hope you have recovered from your tumble and have enjoyed your day in the Cotswolds. It's been mostly sunny here in Northants (typical Brits - we always get onto the weather LOL!) and I seem to have been asleep for much of the day. Have cut my stroids down to 1mg Dex in the am and am on the week off with Xeloda. First time I've felt really tired so am assuming the stroids counteracted the effects of the chemo.
Laurie x
Barbara, Apple, Kathy, Maui xxx
0 -
"I've had a lovely day in the Cotswolds (we have a cottage here). Pottered around with dd and big sis. Lovely frothy coffee this morning and scones with homemade jam and cream for afternoon tea mmmmm !!
Currently lying on the sofa with dog, dd and sis all snoozing round me :-) "tillycat your post made me say YUM.
0 -
Tillycat, I will have to make scones today after your post - I love living in Germany but your description of your day made me homesick for a particular kind of Englishness. Luckily, I have plenty of home-made jam from a friend.
Jenn, hope you're having a good day today.
As for me, I fell over twice this week, both times because of a new pair of shoes. They are backless wedges with a small platform, the sort of thing I used to wear all the time. Comfortable. The first time I tried them on at home to show my husband, I walked through the door into the living room but although my body went ahead the shoes stayed gripped to the carpet and I first whacked my shoulder on the doorjamb and then nose-dived through the door. I had sensibly, I thought, bought rippled soles for more grip and hadn't bargained for the grip on the carpet. I lay there laughing because I felt so ridiculous. Three days later I wore the shoes again for a dog walk (on the pavement) and trod on a small stone - it was enough to tip the shoe and down I went. This time I had jarred my back and had to spend two days on the sofa. It's okay now but the shoes have to go - I need to say goodbye to platforms of any kind and that's hard when you're a small person and are used to wearing heels. I'll have to buy something SENSIBLE, oh dear...
0 -
I've been away for a while and am just starting to catch up on this thread. WBR radiation worked, everything looked smaller, yeah! Unfortunately I found out last week the pinched nerve feeling I had in my shoulder is the result of mets on my spinal cord. The docs are pretty convinced I have leptomeningeal disease, ugh! Had a lumbar puncture yesterday to confirm, but I've already been scheduled for surgery to put in an omaya port on the 19th. The upside is that in talking to the doctor who did my lumbar puncture (she's the brain mets specialist at my hospital) this is not a death sentence and I need to ignore what I read online. She has one patient whose had leptomenigeal mets and is still alive after 10 years! That's got to give the rest of us some hope!
0 -
Oh Barbara...spectacular fall of the week. I know its discouraging to wear sensible shoes all the time. Do you think you have some neuropathy?
And Rigmarole, what a positive attitude at sucky news. I agree none of is knows who will get the ten years. So live as well as you can. (I keep repeating that to myself)0 -
Ah Rohm that sucks. Stupid cancer.
I recently spoke to my Radio-Oncologist at the Royal Marsden in London (considered one of the centres of excellence in the world for cancer) and was quizzing her about Lepto mets when I got my brain mets diagnosis. She seemed surprised that I though it was the kiss of death and also said that she has treated these mets successfully.
Hugs
Laurie x
0 -
Banjo...Hate the fall and the sensible shoes.
But I seem to look at and skip the heels in my closet too.R..Love that the doctor has a good attitude...if he's happy to hang in there, hang with him. And I totally agree about the internet..good info there, but we have to know most of it started years ago and has nothing to do with OUR reality.
0
