Brain Mets Sisters
Comments
-
Hi lassman
Alestas right - I am at the Marsden but because the brain mets were spotted before the cyberknife was opened there I was sent down to the Cromwell. I have had all of my brain scans/ gamma knife treatment there since and go back to the Marsden for liver/bone/lung stuff (which is actually what's causing the most worry at the moment)
I am due to have a pet scan at the Cromwell soon as they want to get a bit more info on the swollen brain mets. I might bump into you in the waiting room sometime :-)
I was at the Marsden yesterday and my liver function is officially cr*p. plus my tumour markers have gone up again (300in jan, 1200now)
What got me worried is that I may not be able to have more chemo if my liver function doesn't improve - but how can it improve if I don't have treatment? I blame it on the damn eribulin, liver function was pretty good before I had that stuff.
Anyway, I felt very depressed. When I got home i sat in the sunshine in the garden and had a stream of visitors (I sent one text and the word spread ...) lots of lovely friends popping in with home made lemonade, magazines, cakes, shepherds pie for the kids. How could I not cheer up?
This morning i decided it was time to get a grip, and so as a big treat to me i went and bought an electric bike. Spent the afternoon whizzing round the lanes near our house. I may look like some mad middle aged woman but who cares! For a woman who hasn't driven for a year it was such fun :-))
Melissax0 -
Melissa, that's a great way to fight back - buy yourself something fun. Your friends sound just the sort of people we all need; I'm so grateful that mine don't treat me like 'Cancer Barbara' - they help when needed but they don't pussyfoot around me and we still have a good laugh.
Laurie, hope those doctors get their heads together and decide what to do and justify their decision to your satisfaction. Being a nurse, you are several jumps ahead of most of us in understanding all this stuff but it's good that your husband is going too. Team-handed is always best.
Barbara
0 -
Tillycat, you are my hero (ine). (It) doesn't get everything. We have our loves, and lives. Good on you!!!
0 -
an electric bike sounds like a blast. I limit my driving.. i don't need to tho according to the Doc. I like having my sons drive.. gives us a chance to talk.
0 -
Those dreaded steriods. Hate them, but can't go without them. I know when I go out I scare the bejezus out of people. They stare, trying to pretend they aren't and I think they're tying to figure out if I am a female linebacker.
I fell off of my chair 3 days ago. I was close to the edge of the office chair, leaned forward and slipped staight down and landed hard on my butt. At the time it did hurt, but just a few minutes. I sat there until it stopped, then got up and finished what I was doing. Well now each day is getting more painful right on the areas that hit the chair and in the upper back above the bone mets. Today I asked my sister to look at my back because my skin even hurts to the touch (of everthing, incl. clothes). She said it was red and warm to the touch. I'm guessing I did more to the area than I initially thought and should call the dr in the morning to x-ray my back. I know this does subject doesn't involve the brain today, but I'm so frustrated and needed to vent because if it's not one thing, its another.
Jenn3
0 -
hi all! it's been a while but i've been trying to catch up with you...I'm sorry there are new people to welcome, but I hope you find as much help and comfort from these ladies as I have. I'm almost done with my first 14 days of xeloda (woohoo) and hoping the 7 days off will give me some relief from the nausea and throwing up that's been ramping up the last week or so. Of course, it could be the tykerb, right, in which case, it will just continue...ugh. It seems if there's a possibility of nausea,I'll get it.
But, I should enjoy the sunshine and stop complaining...so, here's hoping you're all finding something to enjoy in your parts of the world. aloha.
0 -
Aloha, mauimom. I didn't tolerate xeloda very well in the beginning and because of it, didn't start tykerb till much later. The combo must be horrible being new to your system. My oncologist changed the scheduling to a week on and a week off and also lowered the dose and the I tolerated it fine for the next year....so take heart...maybe a different schedule/dosing will work better for you. Almost anything is more tolerable than nausea! Hope it gets better...give an update when you can.
0 -
thank you Jill!
0 -
Mauimom!!! Aloha. I will be in your neck of the woods in 3 weeks!! I was wondering how you were! How is your family, besides getting big and almost done with school? I am so sorry about the belly problems. I see people so much worse than me, and then I wonder why they don't look nauseous....
I hope you're feeling beter soon. I am on an anti nausea drug, Reglan? 4 x a day. Seems to work. Less saliva is a big help for me. Really good to see you. 0 -
Lassman good luck with the scan
jenn3-so sorry you are in pain vent away that is why we are here
tilly so glad your friends are there for you and I can just picture you zipping around on your new bike sounds like so much fun
0 -
Hey all,
Had my brain scanned at Bupa Cromwell in London today. Tomorrow I will find out just what is going on in my swollen noggin. What is dead and what is alive.
Tillycat - Hope I bump into you at the Cromwell at some point
. Very best of luck with your bone/liver/lung probs and hope liver fuctions improve.Alesta29 - I'll try not to post twice this time!
Lassman
0 -
Good luck with the results Louise! Great that you don't have to wait too long.
I had a copy of the letter sent to the GP which arrived this morning. It said they had unfortunately found some bone mets on my MRI... Um - think you mean BRAIN mets! Had to call the sec to tell him to correct the letter - sheesh!
Lx
0 -
Hi guys!! I saw my oncologist for a check up this am. Weight is holding steady at 130 lbs. Considering I am 5' 8 not too bad. I started all this crap at 119lbs. It's good to have a little cushion. We decided no scans on my brain unless symptoms change. I will not sign up for gamma etc. WBR was more than enough. Dr is keeping chemo at a low toxicity so as to not wreak too much havoc on my cancer ridden liver. So, the bottom line is, I am putting out the fires but I am/will not give up more of my quality of life to do it. The doctor has given me 2 or so years. Not long enough, but I will spend them living. I feel really good besides the nausea ( meds for that) and the occasional aches and pains. Our daughter's graduation is tomorrow, I have to get her packed for Waikiki, and I have to start looking for that under inflated raft for Maui. Stuff to do!!!! Hope everyone is feeling groovy.
0 -
Hi guys!! I saw my oncologist for a check up this am. Weight is holding steady at 130 lbs. Considering I am 5' 8 not too bad. I started all this crap at 119lbs. It's good to have a little cushion. We decided no scans on my brain unless symptoms change. I will not sign up for gamma etc. WBR was more than enough. Dr is keeping chemo at a low toxicity so as to not wreak too much havoc on my cancer ridden liver. So, the bottom line is, I am putting out the fires but I am/will not give up more of my quality of life to do it. The doctor has given me 2 or so years. Not long enough, but I will spend them living. I feel really good besides the nausea ( meds for that) and the occasional aches and pains. Our daughter's graduation is tomorrow, I have to get her packed for Waikiki, and I have to start looking for that under inflated raft for me, for Maui. Stuff to do!!!! Hope everyone is feeling groovy.
0 -
Hi all
Jodimomoffour, It sounds like you and your onc have a really good approach to treatment. I think a 'softly softly' attitude might have been a bit kinder to my liver. Hopefully I will still have some treatment options and I can ask for low doses next time. It's not really the end of the line. I am trying faslodex (sp?) at the moment. It's only been 4 weeks and I'm told that it might take a while for any positive effects to kick in. Fingers crossed
The steroids do seem to making me feel a bit livelier. I hopped on my new bike and went to the local shops all by myself today (first time out alone for ages!) mind you by the time I got home I did feel rather like I had been run over by a bus :-( ..... But, baby steps and all that.
I have an appointment to see the counsellor at our local hospice tomorrow and that has led me to thinking about how I discuss this whole cancer thing with my kids. The trouble is I really don't know what to say to my children (10,12 &25) I try to be honest with them, they know I have cancer, they know that it has spread (although I'm not sure they could name all the areas!) they know when I'm having chemo and when it has stopped and I am changed to something else. They see all the meals, little gifts cards etc that friends drop off, they know I get tired easily, can't drive, have help around the house. I told them about the 'bits of cancer in my brain' - and I actually showed my oldest daughter my MRI brain scan (she's studying radiology and working at kings in London) and my dh and I explained about gamma knife treatment, but we have never talked about me dying.
When I was first diagnosed with secondaries in 2009 I was told that if the chemo was successful I probably had 12-18 months to live. I said that I didn't want to know unless the prognosis was more like 3-6 months.
When I was diagnosed with brain mets I was told 'ok now it's 3-6months' - that was 12 months ago. Now my oncologist tells me that I probably won't see my son (who's 10) into secondary school but now he always adds 'but you never cease to surprise us'
I went to see a complimentary therapist at our local hospice the other day and she said that but 'refusing' to discuss my death with my children I was keeping too much of a lid on all my emotions and was causing myself, and therefore everyone around me even more stress than if I just opened up and discussed it (she was the one who organised an appointment with a counsellor)- but how can I when I don't know when or how it's going to happen? I'm not completely ignoring it all - I've sorted out photo albums for each of them and am writing little comments next to each photo. I have started putting together memory boxes.
I do feel a bit like I'm being bullied into telling the kids more than I'm comfortable with, but maybe they are right and I should be saying more.
So I suppose my question is, I am telling them the facts about my treatment, should I be doing more? Any thoughts?
Cheers
Melissa0 -
Oh Tillycat, I certainly wasn't directing my experience and wants, and needs towards you or anyone else. I feel like this is the most personal, private thing I have ever dealt with. I can only believe it's like that for each of us. There is no right or wrong way. Your kids are so much younger than mine, I am sure explaining anything would be way different than it would for me. I went and saw a palliative care DR to let my choices be known to all. Our kids know I do not want to be cared for by family, and I would like to die somewhere other than home. I want my Husband and kids to come home to our house, not have me carried out. I have all of my 'control' issues notarized and everyone knows my wishes. Please know, I am not giving up, I plan on being here a while. I have way to much bossing around to do!!! On a personal note, kids are pretty tough. They know way more than we think, and they have spent their lives studying us!! They know more than we give them credit for! I love your bike stories. They sound like freedom to me!! One day at a time. Hugs.
1 -
Jodimomoffour - I wasn't even thinking that you were suggesting that!!
I really do worry about what I'm doing and if it's right. I am a bit of a sponge when it comes to hearing about other people's thoughts and decisions, but I think I store it all up and then choose the bits that work for me.
I agree with you that kids know more than we give them credit for. When a friend dropped off a bowl of berries for us all this evening my 12 year old said 'why did she do that' i told her that it was probably because i has been feeling a bit unwell lately and she said 'well doh! As if berries are going to make it better!' (at which point i had to explain that it was more a wsy of showing that she was thinking about us, and berries were a lovely thoughtful gift as they are full of anti oxidants!
Finally it maybe that I am over analysing it. (probably because of feeling a bit told off by the therapist). Perhaps I should just go with what feels right on a day to day basis, and just get out and enjoy my bike rides!! ;-)
Hugs mx0 -
Definitely, Melissa....go with your instinct. You know your family best and what you're comfortable with. Don't be "bullied" into something that's not comfortable for you even if by a well meaning therapist. Judging from your daughter's comment, your kids already know it's serious. Take your cues from them. If they want to know more details than what you're telling them i think they'll find a way to ask.
0 -
@lassmanand others
Here in Canada waiting time for tests is very long. Today got an appointment for ASAP priority MRI, it got scheduled for April 2013
. CT-Scan is a 4 month wait. My mom is now going through whole brain rads, 3/5 sessions done. Hope it zaps the tumors. Anyone here is on edge-cam system ? Do supplements help by sensitizing the tumors ?0 -
Hi Melissa
Well as we all know, there is no 'one size fits all' in stage IV or with kids, so I think you just have to go with your gut instinct.
As you and others have already said, it's likely they know what's going on but will deal with it in their own way.
I have a 12 year old daughter and almost 15 year old son. When I was first diagnosed I told them I had BC, we all had a cry and then went to Pizza Hut. After I got the scan results back saying it was stage IV (2 weeks after initial diagnosis) I told them it was "a bit more complicated" than straightforward BC, that they couldn't cure me but that the doctors would work with me to give me different sorts of treatment to try to keep things at bay for a while (I think I was that vague about it!)
After the brain mets diagnosis last week, my husband and I sat down with them and told them that it had spread to my brain and that this might change things in terms of how long I had to live, BUT, I emphasised that for the moment, I am doing OK and am talking to the doctors about what treatment is next. I think the biggest thing that shocked them was how upset my husband was - most kids probably never see their dad breaing down
My daughter is pretty nosy and I know that she has over-heard me talking about dying to friends who have visited and I'm 100% sure my son knows the score because of comments he has made and he's being extra-nice at the moment! Having said that, he sometimes comes out with stuff like, "So what were the results? Do you still have cancer?" and I guess that's just his way of dealing with it.
I know that I've said this elsewhere so forgive me repeating myself, but the psychologist I spoke to said it was important that kids realise that we feel sad, we cry and then we are back to being 'normal mum' again. It stops them thinking that the world is caving in because you're upset.
Just go with the flow. They're not daft. As long as they know they can talk to you they'll be fine. Do the school know? My kids teachers have all been told and my daughter has a 'time out' card she can use to leave the class if she's upset (but I've warned her not to use it to get out of Maths which she hates!)
BTW, I think the complimentary therapist had a real cheek telling you want to do and I'd ignore her. We deal with stuff in different ways.
Also, did you see the thread about the Bio sphere -thingys for liver mets. Thought it looked interesting - not sure if they do it in the UK but thought I might have a look around.
Hope you can get out on your whizzy bike this weekend as the weather is looking pretty fab.
Lots of love to all the other braniacs - have a good weekend
Laurie x
0 -
I ALWAYS throw my kids shocking bits of information to keep 'my cancer' front and center. I don't want them to dwell on it, be burdened by it, but i don't want them shocked to heck when the time comes. I tell them that my last weeks will most likely be gruesome and to hire a nurse so dad won't have to change my diapers. They listen. They are sensitive, willing to help me, delighted that i seem normal and I do everything I can to ensure this time of their life is spent wisely. I have to see about braces for my daughter, my son seeing a dermatologist for precancerous moles, visiting a nutritionist for my hefty son (yeah right.. he won't do that, but he will practice throwing the discus in the back). I have yard projects that they can help me with. I warn them about their aunts (one on each side and how to maintain their distance). We talk about how we have them legally taken care of. I tell them of my fears and try to spend positive time with each of them alone. Son #1 is taking me to lunch to day.
Sooo.. anyway, Tillycat, Melissa, this post was originially directed at you, I find it easiest to include cancer in my conversation often and often.. so that we are all comfortable with it. There are so many things to think about. One of my greatest fears is that the television controls will be lost or out of batteries. It's important that my kids know that. One of the funnest things has been to discuss ' who gets what and such' - i have some pretty wild paintings and it has been fun listening to the kids say to each other.. well we can always trade every five years. They basically get along great (12, 15, and 18). i don't know how i was blessed with such wonderful people to know.
If the 12 year old girl would quit yelling about the towels on the floor, i could live with that. there are some things that just drive her bats.0 -
Mellissa. I was told after getting brain mets last Sept that I could go anytime and that I should tell my kids. Fast forward 9 months later and the mets are stable. I wish I didn't say anything now because my sons could have been joyfully oblivious. At the same time I do think that kids feel better (age appropriate) knowing all the details otherwise they imagine the worst. Although who am I kidding this is the worst!
Hoping your family and friends surround you and yours. Cancer sure does suck!0 -
Here's my latest train of thought. You don't have to read it. I blather.
I find it very weird, that I am living like I am immortal, but I have to deal with the other side of that story. Hoping for the extreme best, and trying to control when I am not here. I am sometimes so difficult.
0 -
Jodi, I know something of what you're saying. In most of my mind, I think I'm going to be here for years. I'm heavily into denial. The other part of me, when I let the little box in my brain (well, I thought it was a little box, I guess it turned out to be tumors) opens......
Started PT today to try to get the balance and endurance issues controlled a little bit. I think it was very helpful to go to Panera first and get a chocolate croissant. In fact, that might become a PT tradition. I mean, I might as well if I'm going to be treadmilling every day. Hopefully will also start soon on some cognitive therapy, altho my onc says to try meditation. I wish I knew HOW to meditate.
Good thing I'm starting the balance thing, as I fell on my butt today. It was WAY early, hadn't had my Vicodin yet even. My husband said something about chasing the cat who was about to run outside while he was trying to catch her to give her some antibiotics. So, carrying my OJ, I stupidly actually took off to do it. My Crocs did not. So I ended up on my patootie with OJ all over me... and had to crawl a couple feet to a chair to hoist myself up. NOT my best moment.
Hope you all have a great holiday weekend and pack in lots of (or even a little) FUN.
0 -
awwwww
I am a bit of the lurchy type.
0 -
Apple, you mean you lurch instead of falling?
Regarding "when"..... my son went to Palliative Care counseling with me. We wanted to give him a chance to ventilate his fear and grief.
He said, well, "it happened twice before". And you know, I think, its happened a lot of times now. The first mets, the next mets, the chemo that made me wanna quit.
Don't want to die every day. So denial is good, live every day.
0 -
jodi & PJB I'm with you on the denial some days I have been feeling really good except for some nausea and I think wow I might actually be able to hang in there for awhile. My family I think prefers to live in denial all the time. On the days where reality sticks its nose in and I make a comment about not being here for something they get very aggravated. I understand but sometimes it is very frustrating. My DD will be 21 in Feb and so that is my survival goal for right now. We have all agreed that this horrible disease will take my life someday but not today and that is how we try to live.
Tilly you should do whatever you feel comfortable with as far your kids go. You know them much better than any counselor.
Had my CT guided lung biopsy today and of course the one thing I was worried about (punctured lung) actually happened. It was just a small puncture but still uncomfortable and ended up spending 8 hours at the hospital. Seems like I can never catch a break. After 2 chest xrays they finally let me come home with the promise if I had any shortness of breath I would call 911. So will get the results next week and then on to chemo.
Hope everyone has a wonderful and painfree holiday weekend!!
0 -
morning/afternoon/evening ladies....a week into my chemo and have no taste
apart from sweet stuff which is great for me but not for the kids as im eating all there goodies..lol reducing steriods slowly and seem to be shrinking which is good as my head looked like it was gonna explode at one stage..
hair thinning but i kinda got used to that b4 and id rather be about and walking than worrying bout hair..x
hope everyone is doing ok ..i cant seem to sleep and am up at the crack of dawn but i think that must be the steriods still..and my eyes seem to get really blurry but that might be the chemo also ..
anyone else have weird tastes etc? i cannot stomach bread and everything seems to leave like a greasy taste even if there is no grease involved...like i said im into sweet stuff....you shoulda seen the kids faces sunday....they got a roast dinner set in fromt of them.....me......cheesecake....lol...mmmmmmmmm
read ya all laters
all the breast
tracy..xx
0 -
I forget what youre taking, darlin', but I have noticed, since the beginning, that I must look at the food and let my stomach tell me what it thinks. At least 50% of the time, the stomach says, "Um, no. No. No. " Then, "Ok!
Meat is the least desirable category. I used to adore a T-Bone. Very rare now. Infrequent, I mean, not bloody.
)0 -
Meat has become a very strange thing to eat. I have never liked a big ol' slab set in front of me, but this new adversion makes any meat intolerable. Although I do love a shredded chicken burrito, no cheese, no beans and no sour cream, with lots of pico de gallo and guacomole, from my local Taqueria. And, I am no fan of Mexican food. Everything still tastes hot (spicy). It can be a bowl of Cheerios. Going to a grad party today, and lunch and a movie with girlfriends tomorrow. We are being really juvenile, and seeing the Dictator. I love that kind of sicko humor. Let me know if you have already seen it. Beautiful sunny day here. Oh, our youngest graduated!!! It was a bit cold, but they kept it short and sweet. She sent her dad a pic of her holding the grossest biggest yellow snake at the Project Graduation Party, around 2 this morning. Biggest smile!!! Hugs and positive energy coming your way.
0
