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Multi Mets now I'm an official wreck!!!!

8 REPLIES 8
bill-ben
Member

Re: Multi Mets now I'm an official wreck!!!!

Morning Ladies hope all of you out there are well and positive. Well I have now been "nuked " on my brain twice this week and it is still working, the brain that is! Saw my GP Wednesday she was lovely but shocked she had not been informed from the hospital about my latest progression also about the lack of info I was given about my steriods. I wasn't told even I shall be taking them long term or that I needed them on repeat prescription by the hospital. My GP asked if they had explained about the danger of suddenly stopping them or any of the side effects. The answer NO no and no!! My sight has been quite dramatically effected but the onc hadn't made any query into this apparentely steriods can cause glaucoma didn't ask if I had it or a family link. I do have a close family link! GP suggested I go to the optition to get checked. Luckily reading the instruction the steriods could turn me into a head ripping off manic monster or a bit hyper. Found after a week now I am awake very early in the morning3.15am today wide awake and ready to go!! The "nuking" was fine don't feel a thing and only takes about 5-10 minutes a time but it is the daily 150 mile round trip to the hospital which is so knackering but if it works that is all that matters. Three more sessions then a week off then hopefully chemo for all the other wrecked bits. Liver and bones just seem a bit insignificant to my poor brain at the moment!! But as I say, wobbly legs as if I'm p***ed, eye that doesn't work, missing boob,hair about to fall out I still feel physically( apart from the previous) and mentally very well!!! So onwards and upwards a nice weekend off to look forward to! Keep strong. 

2catlady
Member

Re: Multi Mets now I'm an official wreck!!!!

Hi,Vicky,glad you have got a date. That will help you mentally .
It always upsets me when I see reason palliative ??!! Why can't we have all guns blazing seems very unfair. I'm having to wait 9 weeks for my rads after mastectomy as it's not urgent!! Secondary BC Secondary care at my hospital.
Glad you have a great GP that will help greatly.
Huge hugs and good luck with your treatment. You go girl and kick butt,Helen xxxxxxx
jules165
Member

Re: Multi Mets now I'm an official wreck!!!!

Hi,  I also have been dx with brain mets after having a few vision problems.  Waiting for RT planning appointment today and just want to get started..  Biggest issue is not being able to drive as feel like I have lost my independence grrrrr....  

 

GL and hugs

 

jules

bill-ben
Member

Re: Multi Mets now I'm an official wreck!!!!

Morning ladies thanks so much for your responses and wishes it really helps and means alot! Still feeling good this morning but looking back at yesterdays post can "see" that the spelling has been a bit effected by the eye! Did anyone ever watch "Emmerdale" recently with the blind character who lived in a house with men but turned up every morning with perfectly applied makeup. Believe me it is quite challaging applying eye makeup to the good eye which you have to shut to get it on!! I don't wear alot of makeup but always wear colour liner as my eyes disappear behind my glasses without it. I use some stuff by Avon which is brilliant and stays put all day so I only have to struggle once a day but it can still end up in wobbly lines.Whatever else is going on I think you feel so much better with a bit of slap on a squirt of perfume etc. Helps when you look in the mirror to not such a fright!! Anyway good news had a phone call yesterday morning to say my radio is to start this Thursday funny to say you are excited about getting your brain zapped but it has been such a long wait for treatment I cann't wait for it to start. Have to go all the way from North Devon to Exeter a couple of hours journey with an appointment at 4.15 so it will be a late return home but hey ho all in a good cause. The breast care nurse phoned me back and answered a few questions. I have 6 or 7 lessions(not sure on the spelling of that) in my liver. I asked about the size of the thing in my brain which she said was so many millimetres by so many, I only work in feet and inches but she said it was relatively small so a little good news! I said I wasn't to happy with the info sheet I got from the hospital describing my radio as palliative radio. I don't like that word I want all bells ringing, lights flashing, both barrels blasting radio she just ummed a bit! Apparently I should have been told that the steriods should be on repeat prescription as I will be on them for a while. I only questioned it because believe it or not the hospital ran out of tablets and had to give me the prescription back to get some more from my GP! I was given an alert card to carry but a missing explination not too reassuring! So off to see the GP tomorrow and hopefully have a bit of a chat  with her. I have been lucky that she only just started at our surgery as all this kicked off I had to see the most awful doctor in the whole world before that. I would certainly be barred from this forum if I really put what I thought of him! Living in a rural area we are unable to change surgeries as there is only one that will take us even though we made complaints about him to the relevant authourities. So onwards and upwards and virtual hugs to all you ladies out there have a good day! Vicky.

roxy12
Member

Re: Multi Mets now I'm an official wreck!!!!

Hi billben,

I'm really sorry that you are having such a hard time. I have Mets to lungs, liver and spine but I am quite well at the moment. I hope to remain well for a while yet!

It must be scary to find that there is spread to your brain but there are a couple at least on this forum who have had treatment for brain mets and are doing well.

Also, I have mentioned this lady before on here and I hope she doesn't mind my using her as an inspiration but if you Google Anne Morgellyn and read of her story of living with secondary breast cancer it will show you that there is hope even with multiple mets.

Good luck with treatment billben. Keep positive.

Love Sheila. Xx

Bevlaar
Member

Re: Multi Mets now I'm an official wreck!!!!

I'm so sorry you have all these problems...but puts mine into perspective thats for sure., especially as I've been having a bit of a down day today with my lung mets! Im sure my cough has got worse this week since starting Capecitabine! Can this happen?   I don't think I'm in a position to moan really. Hope you get things sorted with your eye and I hope to see you posting on here regularly with updates for us on how well you're doing!

Sending you huge hugs and lots of love ♥

Bev xxx

2catlady
Member

Re: Multi Mets now I'm an official wreck!!!!

Hi,billben,sending you a massive hug. What a total shock for you. I'm so humbled by your positive attitude at a bl@@dy awful time.
Yes,you are bound to feel a wreck it's a heck of a lot to land on you and the waiting for treatment to start seems to take forever.
We all on here have every thing crossed for you and the rads will nuke the little buggers .
Huge huge and take care,Helen xxxxxxxxxxxxxxxxxx
Jo_BCC
Member

Re: Multi Mets now I'm an official wreck!!!!

Hi Bill-ben

 

So sorry to hear of your latest diagnosis, if you need someone to talk to in confidence, then please don't hesitate to call the helpline here, they are here to support you through this.  Calls are free 0808 800 6000 lines open weekdays 9-5 and Saturdays 10-2.

 

You might also find some good support on our Secondaries Live Chat service which runs each Tuesday evening between 8.30pm and 9.30pm, the session is hosted by a nurse and a facilitator is also at hand for the technical side.  The regular users of this session are a wonderful support to one another and I am sure would welcome you.  I've put the link to live chat below for you to have a look at.

 

http://www.breastcancercare.org.uk/community/chat

 

Take care,

Jo, Moderator

bill-ben
Member

Multi Mets now I'm an official wreck!!!!

"!_+++ ~~~" ***** ::==...>>>. Thought it better to put that than the bad language I could use and get thrown off here! Had MRI last Wednesday on my liver but got a call the day before to say they would do my head as well because of my dodgy eye and wobbly legs. Saw the onc on Thursday to tell me I am now a total wreck as the cancer is now in my brain! Only positive note it is confirmed I do actually have one even if it is a bit dodgy now! Put on steroids but unclear instructions on how long I should be taking them for so waiting for the breast care nurse to phone back. I was sent to Exeter to have a mask made to hold my head still while they blast my brain with radiotherapy. Apparently the cancer is at the back left side but effects my right eye. It is frightening how much my sight has deteriorated in a week and a half I feel that I am looking through a very thick lace net curtain with only about 20-30% vision left but still have to wait 2 weeks for radio. I borrowed some crutches from the red cross which have been a great help with the balance. The liver has definate mets and my spine and ribs so I am an official wreck!! Still I still feel good apart from the eyes aching a bit, sleep well, eat too well and can stil walk the dog albiet a bit slowly! Very difficult telling the kids and hubby taking it very hard but we are having fantastic support from friends and family. Good point got my PIP which has entitled my to mobility so though ##d it we'll get us a new car! Had great fun going round trying different cars needed something that my lovely husband described as having to be suitable to just put my fat bum on the seat without having to bend in case my back goes!! Also to have room for the dog and a wheelchair if the time ever comes so we settled on a lovely shiny panther black Ford Kuga! Coarse due to my condition I could never possibly help clean it ha ha!! Feeling pretty scared with the brain news but trying to be as positive as I can all fingers and toes crossed but still wishing for drugs and treatment to start it has been such a long wait. So any more multi mets out there want to compare notes?!!!?