Thinking of you Moijan. ???
Hi truffle
Two things… yes don’t ask for an estimate of time… they really can’t know and being given their opinion or a guess won’t hope your morale. The other thing is… and I’ve said this before hospices are not purely for end of life… they are excellent at helping sort the best pain relief and offering lots of support/ guidance so try not to think of being in a downhilll spiral … the support a hospice offered can prolong life by cutting down on pain and increasing relaxation and wellbeibg XX
Do keep us posted truffle about how it allgiesxx
Moijan???
Hi Truffle,
Glad you’re better & am very encouraged to hear news about your liver scan. May the tumours continue to shrink. Natural to be afraid of next stages in this treatment process. Even when everything’s going in the right direction, it’s tedious because all you want is for the next set of treatment to work just as well & it can play havoc with your mind! I can’t pretend to know what will happen with your double vision. However, my blurry vision lasted for the best part of six months & annoyingly I got so used to it, I wasn’t even aware when it cleared up - mine was due to the chemo though but there’s always a chance your double vision will improve. I still get blurriness sometimes & my balance slowly improved over the last sixteen months but I notice it goes t*ts-up (see what I did there? ?) when I become ill… e.g. when I had an infection, the flu & my recent bout of pneumonia. I agree with Moijan re hospices. They’re useful in many ways.
Totally get you not asking for a time estimate… I haven’t either &, again, I agree with Moijan. The medics themselves don’t have an ’ accurate’. Have also found the more I get used to my ’ new normal’, the less I feel the need to… at least for now. Do whatever’s best for you.
Beautiful dogs Marnster.
Wishing everyone peace & hugs.
Lissa ???
Hi Truffle, Marnster, Abney, and everyone who s either a resident of this thread or a sporadic ‘hopper’ in to it when the mood suits… sorry ive been quiet…was away on a course for a few days and needed to get myself into a really helpful frame of mind and body for it.
Truffle…you havent shared a lot about exactly where you are in your bc or what you have been told…but i will share one of my own firmly held beliefs with you… its not always good to soak up Doctors predictions as gospel…
there are several people on this site who have been given ‘bad news’ by their onc…the oncs are not visioneeers or seers…they are brilliant doctors, and are obliged to tell us as they see it…but they dont actually know How long a patient will survive…they cant because each of us is different and also, sometimes bc goes into the opposite direction suddenly and noone knows why…
one thing I DO know…is that once a doctor says you have only 6 months…if you hang on to THAT… Chances are it could be a self fulfilling prophecy…whereas if you felt able to say ( and here comes the moderator!) If you were to say, well ‘bugger that’ ‘, I’m not havng that’ then people can often - surprise their doctors by sticking around much longer than expected.
So…my own advocation would be…put your affairs in order if you want to…then live,
as much as you can…,each day as much as you can Truffle , try and say fingers up to bc…I’m living every day to the limit. And please check in and say ‘sod it’ on here as much as you like…we love swear days on herexxx
Having said all that…some people decide they will quietly just accept whatever happens…and thats ok too…xxx
truffle.
re double vision…am so sorry about that…Lissa mught have sone suggestions there or one of the other ladies might. But i have noticed and Marnster stated that steroids helped to reduce some of the symptoms…
regarding the balance…chat to your onc, ask if any of the drugs used for vertigo or middle ear symptoms mght be of any use…you can only ask.
i DO. Know that being dehydrated can make me dizzy and its well documented that dehydration causes the brain tissues to shrink( thats everyone…not just bc sufferers) and so dehydration might be adding o your problems…but do, please ask your onc…we arent doctorsxxx
lots of love,
Moijanxx
the other thing is truffle…whilst they are treating your liver mets…hopefully your brain bits will benefit too.
Yes truffle… it’s tough being ill with bc when you’ve worked in the field Xx
So important tho to take a step back from what you knew… don’t compare as we are all different and our paths are different Xx
Hopefully being one of the staff means you are surrounded by warm wishes and support xx
Much love
moijan???
Hi truffle and all,
Nice to hear from you. Had my day one yesterday following skipping a week’s chemo … actually am feeling pretty good considering, but I think most people on my chemo would say it’s less drastic( for some of us)
How is your diplopia going? Think you mentioned steroids and that things had been a bit better motor wise? I Have all my toes, fingers, legs and eyes crossed for you and also for Marnster who is also travelling unknown territory, ( forgive me if I’ve forgotten or mixed you both up a bit)
Please keep posting to keep us up to date, we are thinking of you… I find that even when I’m away from the forum, the users crop up - bumped into a hospital chaplain Wednesday when I went for pre chemo bloods and she said a prayer for me which included everyone on the forum xx
I think that whatever beliefs one has ( or hasn’t) thoughts are pretty powerful stuff - prayers ( by others) definitely help me maintain my spirits.
Moijanxxx
Oh, and re chicks, spread your pile out over days if you can - like you,I have one, but will try not to feed too much sugar to the bc in one day! ( personal choice… as there are either 28 or 38 sugar receptors on each bl**dy bc cell! ). But WILL eat it all eventually!
Mx
Sorry… meant chocks — damn predictive text xx
Hello. I had posted a new thread and was advised I should repost here so that I could hopefully connect with some others with a similar diagnosis.
I was diagnosed with SBC in September last year (tumour in mediastinum). In February I found out there was spread to my liver (Taxol stopped after 16 weekly doses) and just two weeks ago as part of the work up to go onto a trial I was told I had 3 lesions on my brain. In hindsight, I had experienced some dizzy spells and a few relatively minor headaches but having had labyrinthitis previously I didn’t really think much of it. I had been experiencing some pretty horrible nausea but nonone really suggested this could be due ot brain mets (put it down to the liver mets) but now think it is more likely to be related to the brain mets. I have now been started on capecitibine and am just In the middle of my week off. Side effects not been too bad.
I am finding the brain mets thing really pretty scary and have been experiencing a shakiness/weakness in my left leg and Arm. Also this week I’ve had quite a bit of pain in liver area but read somewhere this could be due to tumours shrinking. Would be great if that were the case!
Carabel x
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Hi truffle shuffle and thanks for replying. I don’t feel so alone although sorry that you are also in this position. I have been put onto capecitibine for both the brain and liver mets and have been told they are not (at this time) considering wbr or gamma/ cyberknife. I am still working as I was determined to carry on as normal but worried that this could be the wrong thing to be doing if life expectancy is now very short (I haven’t asked). I am mainly well but have some nausea and a shaky leg and arm as well as the usual fatigue! I am wishing you lots of luck with the paclitaxol - it seems to work well for lots of women. Please keep in touch and let me know how you are getting on.
Xx
Hello Carabel,
Welcome to this thread and sorry to hear you have a need to join. My situation is somewhat different to yours and Truffle’s. I was diagnosed with metastatic BC 18 months ago but I only had brain mets to deal with, however, I also have dizziness, poor balance, blurry vision (which, apparently, is from chemo - I’m on Kadcyla) and loss of use of my right arm which happened soon after my craniotomy but some of these have improved since. The numbness in the arm started before I knew what MBC was and furthermore what brain mets even were. I had CyberKnife too and have spoken to a few ladies who’ve had that or wbr with great success. Hearing you have brain mets is a scary concept but your medical team clearly have a treatment plan in place for you. Personally, I find the idea of any kind of mets scary and I admire anybody who has to deal with such a situation. Maybe they want to see how the capecitibine works before deciding whether they’ll use radiotherapy on you and which form. It’s natural for you to experience fear but I just want you to know there’s always hope. Feel free to load all of your worries on this thread (should you wish). Thinking of you.
Truffle, good luck with your remaining treatments. Keeping all bits of me crossed it’s working effectively so they can concentrate on the brain soon.
Hope all you ladies had a joyous Easter and are all doing well as can be.
Much love, Lissa xxx
Hi Ladies,
hope you are all feeling well today , well can anyone give me some info or guidance …
I have accepted some treatments at local Hospice , very hard for me to join this group , however I was assured its not that I am poppin off yet , its just to get me access to everything .
Well I had Reiki yesterday , which was good , but at the end I asked if she had got anything from the session , she said oh yes I saw your death which is going to be very peaceful and I attended your funeral , I was upset but did not say antything, but thats me , I hate confrontation, she then asked if I had been arranging my funeral , which I have , I have to be in control.
So instead of being uplifted from my treatment , I am very upset , and angry , was she right to tell me this ???. I love Reiki but I am not happy with this one ?
take care xxx
Hiya
That’s strange but a couple of other ladies were told the same thing from their reikki master and stopped going as they were freaked out by it … it’s not very nice and that’s is why I cancelled my booking too …
Maybe try something else on offer ?
Anyway try not to get too upset by it .
Hugs xxxxxxx
thanks ladies,
It is very strange , I will have an informal chat with the Mac nurse when she phones me , it has put me off , i do love reiki .
keep well and warm its freezing here in Manc townxxxx
Hello all. Thank you so much for your replies. It is reassuring to know I am not alone.
I have developed another symptom coming from the brain mets I think. My left leg and arm arm are weak and shaky with presssure one when walking the pressure on my foot makes the leg shake and when I hold anything in my left hand my arm starts shaking. Using keyboard at work is also becoming difficult. Anyway I’ve a load of questions for onc when I see him tomorrow.
Marnster glad you’ve been doing ok on your new treatment. Here’s hoping it does its job.
Lissa I hope your symptoms continue to improve
Truffle shuffle I think it’s awful what the reike practitioner said to you! Completely out of order and you should definitely complain.
Xx
Hello lovely ladies
Just catching up with all your news, welcome to you carabel. As a newbie myself, I cant begin to tell you what a wonderfully supportive and knowledgeable group this is xx truffle, so angry on your behalf to hear about your experince…if you feel up to it, maybe it would be good for this “practitioner” to get some feedback via the mac nurse regarding her practice, what an insensitive and outrageous thing to say!! its quite frightening that she considered this to be in any way acceptable x
Sounds as if we are all continuing to battle away on our own individual cahllenges, how are you all keeping? yet again im struck with the kindness and courage that you have and share so readily wiht one another xx
Just been gettng mum through the WBR. Funny wee story, she kept on forgetting when she had bought easter eggs and ended up with about 30!! we are at hopsital monday for scan to see what the wbr has done to tumour and to see if there is any spread elsewhere. We are choosing life and hope in this moment.
Thoughts and hugs to you all
Hi Truffle,
I agree with all that’s been said on this thread re your Reiki session and the practitioner’s upsetting comments. Is this normal Reiki practice?!!! I’ve never had Reiki and know very little, if anything about it. Nevertheless, I cannot understand why a so-called professional practitioner would feel the need to say something like that to anybody, especially someone who’s in a vulnerable, sensitive position and who didn’t ask for that _ particular ‘information’ _ (for want of a better term - as has already been stated, it’s not exactly what I’d call ‘information’). Is it possible that she felt making this statement to you gave her some sort of powerful, visionary control? What comfort did she think she gave from saying it? I’m baffled as to what she imagined you’d gain from it!!! Dealing with this disease is difficult enough without the added fear from episodes like this. Personally, I’d say something to the MacMillan nurse but, more importantly, find a way to provide feedback to the hospice so they know exactly how it made you feel. Whatever and however you choose to deal with it, please remember also that _ you know what is acceptable behaviour and what is not _ and you have every right to feel upset by this incident. Goodness, don’t we have enough sleepless nights as it is???!!!
I strongly agree with Moijan’s point that the Reiki lady (nobody actually) does not have a specific channel into the future of our lives and she cannot predict when it’s ‘_ our time _’ and what it will be like. Just my opinion. If it’s the case that they do, what exactly are we hoping for and why are our medics even bothering to take the time to meticulously examine our individual cases providing the appropriate treatments for us… treatments that often show promise? And why do we bother to give it a go? Sending you snugly hugs. xxx
Moff, delighted to hear your mum’s getting through the wbr with hope and humour. She sounds wonderful and has terrific support in you. Wishing for encouraging news from the scans.
Great to hear from you Moijan. Welcome back!
Much love to everyone. xxx
Hello everyone. Thank for your encouraging words and information. I spoke to oncologist last week about why I had to have cape before thinking about any brain radiation ands it’s apparently because they need to get liver under control. Radiation could make me too sick for chemo and they don’t want anything to get in the way of the chemo. Subsequently however my blood results came back and I couldn’t get my second cycke of cape because my liver ALTs have doubled. They think it could be that the liver was struggling to cope with toxicity of cape (I had full dose) and that I can try again on a reduced dose this week. So fingers crossed that the numbers have come done. I did have liver pain last week which is not so bad now so I am hopeful! On the plus side I got away for a lovely overnight stay on the island of Arran with a good friend.
Good luck to everyone with their treated and I hope we all get a bit of sunshine soon. It’s been freezing here last few days.
Xx
Hi all ,
Sorry not been on In ages , had a break from forum and just been getting on with weekly paciltacel so nothing to report . Got refused pertuzumab even though it’s the best for my her 2 pos as not licensed with weekly . But fed up about that but it’s not got 4 left now then my double mx …
Anyways I came on to support truffle … my god it makes me so angry when people talk or look at us like we are dead … I feel like saying “you could have this inside you and not know it,like I did once…” that would shock them . But I’m to kind and polite so I say "thanks " I mean “thanks " I’m such a light weight sometimes, even though I have done a lot of personal development I still worry about being judged as rude !!!
But that’s all for them , this is about us ,
So truffle , for you I would say” F her and remember karma " and let her stupid comment wash over and past you and smile at this day we are all here on …
Or … complain to her superior and also see her and tell her how it made you feel and the angry and hurt it’s caused you , and that she could get ( pushed) hit by a bus any day and you would try and make time to come to her funeral…
Or we all come and do it with you hunny ??
REMBER #reikiteachersarefullofcrapanyway
Zena 