Nb
She should not be working at a hospice, full stop.
I was offered yesterday by my physiotherapist to go to hospice, she said you could have reiki and I nearly jumped out of my chair . She said not reiki then ., and I just said, no-way sorry …
Good news yesterday. Liver ALTs have come down a bit so back on cape at a reduced dose. Only 2nd day and bones feel very sore - is this a normal side effect of cape? Also very fatigued. Didn’t have any of this on first cycle. Oh dear I’m never happy - desperatel to get back on chemo and all I can do is moan lol.
Hope everyone has a lovely holiday weekend. Xx
Truffle shuffle I hope you got your last paclitaxol. When will you have your scan?
Yes …carabel, a lot of chemos do this to us… at least initially … I had an extra week off during my last cycle and this cycle has hit me in my knees… I think my body got used to it! Will keep you all posted about my MRI results when I get them next wed…
Truffle…hope you have managed to move on … 'head space ’ is helping me to deal with useless/unhelpful thoughts … have had several this week… I also find that achieving or improving a skill or doing something spontaeneously ( unexpected) for a friend has helped me to feel better in myself… sometimes works anyway. Xxx
Love Moijan???
Yes do keep us updated Moijan x
Yea sorry just a rant … no you’ve not put me off I’m more an acupuncture girl anyway xx
I hope your ok that’s all xx
Hi everyone. Have been missing for a bit. Just settling back into chemo after the long break. Both my MRI & PET/CT results were good & no sign of progression which is a relief. I plan to get as many decent nights of sleep as possible… finally! Next scans due in 6 months so scanxiety again then, eh. Doesn’t really get any easier.
Hi Truffle. I hope we’ve all been able to put your mind at rest somewhat after that dreadful episode with the reiki practitioner. I only wish it was possible to undo what you went through but that’s part of dealing with people when it comes to MBC, whether they’re professionals used to working with us or not. It’s evident no matter how close a person is to MBC patients, it can never be truly understood unless it’s being experienced first hand &, of course, we wouldn’t wish this horrid disease on anybody. Despite that, I still feel she was completely out of touch with what you wanted from the session & it should’ve been blatantly obvious that that was not the ‘information’ (it’s hardly information though, is it) you were after. Please do report it. I haven’t had reiki & doubt I ever will… not because of what happened to you but honestly I’ve never been interested in it or anything similar. Never been my sort of thing. I get reflexology sometimes & might consider some sort of massage but my music (especially my jazz) is my relaxation & therapy source. It will take a bit of time but eventually (& sooner than you think) you’ll be able to dust this incident off your shoulder & out of your mind. Keeping fingers crossed that WBR is the next stage for you.
Zena , I bet you’re fed up re the pertuzumab. I hope the paclitaxel proves to be just as effective.
Carabel , Wonderful news re the liver ALTs. My chemo doesn’t hurt the bones that much but it does give me headaches.
Moijan , best of luck with the MRI results.
Enjoy the rest of your holiday weekend. It’s International Jazz Day today so I’m going to see some live jazz… did I say jazz, haha !!!
Much love & hugs. ?? xxx
Hi truffle…
dont lose faith in the hospice…really, I bet they were as shocked as we all were…they will address the issue.
hospices generally are pretty marvellous places…and ive also had lovely Reikhi, so hopefully you can move forward in your own timexxxx
loveand hugs,
Moijan.
Now…several people havent checked in for a while…theres Marnster, Caroline, and several more…
how are you all doing? Love and hugs everyonexx
Moijanx
Great Marnster!
am thrilled for you. My own chemo is now under suspicion of ‘slacking off’ eg sleeping on duty!
so if that gets confirmed, I might just nip over to your place for a barbie and a few tinnies before too long!
keep us informedxx
Moijan???
Hi Lissa,
hope your jazz weekend was all you couldve wished for?
love and hugs,
Moijan???
Hi Carabel,
keep us posted abut how you are going?
hope you feel a bit betterxx
Moijan???
HI All, good to catch up with your news xxx sorry not been on for a while…mums been diagnosed with liver and lung mets and possibley lump in the masectomy site is also disease. So its been extremely tough, adapting to hearing bad news. Cons has suggested an oralchemotherapy drug, begins with c if she doesn not get on trial. Shes also had pelvis scan today and bone scan scheduled for next monday. Still waiting on screening bloods to come back for trial. Shes been unwell too and in bed with no appeteite, I suspect a mix of her mood and how shes feeling physically. It makes it more real to see her so unwell. shes been pushing us a waya wee bit, thhnk she is trying to protect us but also doesnt have energy. Shes been the most wondeful mother, I just want to treasure and protect her. feels like the beginning of the end. Sorry for doomand gloom, its just relentless. Take care lovely ladies xx
hi Ladies,
hope things are going well , I was wondering if anyone can help, im havin g bit of a wobble today . I am due Mri brain scan on 9 june, Mets were diagnoded in february , but I needed chemo for liver mets first , they are now under control.
I was told then I would need WBR , I estimate that if I am to have treatment this wont start before the end of June , howev er my legs are weak , i have a wobble and sometimes I talk like i am drunk , these sympoms have been progressing over the past two weeks.
I am paniking , I feel I want treatment now , am I over reacting, , shall I tell the hospital this week , or will a couple of weeks make no difference ?
Thank you
xxxx
I
You push for what you need truff …
I’ve just had a ct scan as been getting bad headaches and memory loss is getting ridiculous now … hilar adenophey in lung needed further scan but has been left - so I pushed for ct.
at the end of my chemo ( weekly paciltacel) been ok but very hard now due to headaches and general feeling crapness …
Getting gene test now . But expecting double mx and full lymph on right side - gonna be fun during the summer hols with my 3 kids ( not ) .
Had a hard few weeks , you guys know what I mean by that I’m sure , but feeling slightly more up now .
Big love 
to you all xx
I agree truffle speak to them steroids might help but you must tell them.
Zena wondered how you were? Didn’t like to ask-thought maybe you were doing well and had decided to give us a bit of a rest… or maybe just glued to fb?
Anyway, it’s lovely to hear from youxx
Hello ladies,
Just catching up on the latest now.
Truffle. Hope you’ve contacted somebody already. There’s possibly a good explanation for why the wobbliness & drunken speech is occurring & there may be no need to panic BUT it’s _ always _ a good idea to contact your consultant / oncology team as soon as you have any doubts or concerns. They can do any necessary tests, act accordingly & hopefully put your mind at rest. Like everyone else has said, steroids may be the answer. It’s very hard not to feel like everything in your body’s exploding when you desperately want to start a particular treatment & you can feel strange things happening. My oncologist used to tell me off because I _ didn’t _ say anything & would remain in a quiet panic whenever I felt something was wrong until I was due to see her next. Usually, all was fine but I always said something, especially after my reprimand. Let us know how you get on.
Zena , look after yourself… sounds like you’ve a busy summer ahead. Hope you’ve adequate support to help with your kids.
Moff , no need to apologise for expressing your feelings. It has to be frustrating for both you & your mother & you have to let it out somehow. Moijan’s right… this takes constant adjustment. Always lean on this thread when you feel the need. Thinking of you both. ?
Great to hear from you all. How is everybody doing?
Sunny day here in London. 
? Will try to enjoy while it’s here. Who knows how long it will last?!!!
Much love & hugs. ? xxx
oh my just saddened to read about the ongoing challenges and the fear that enivetabley follows these.
Truffle, I echo what everyone says, I do hope that you saught advice, so that they can get to the botttom of the symptoms and treat appropriatley. Maybe just some irritation or inflamation xx big hug to you x
Zena, so sorry to hear that you are facing all of this, what a huge burden to carry on top of being a mummy too, much love to you x
Lisa, how are you doing? so glad to that the sun is shining in london and you can enjoy it, as you say let the good times continue as long as they can xx
Thank you M, for the kindness an dyou are very wise toox How are u? x
how are all our ladiesxx
Hello ladies,
enjoying the warm?
i must say im finding wigs very hot…have just ordered som bits from Heathers hair and these are much cooler and seem very natural.
talk soon
Moijan???
You girlies are so ace…
Tooooo hot for a wig … like having a cat on my head … bloody hell cancer is very inconvenient and inconsiderate actually… it can just go now and leave me alone so I can sleep like I used too
Eat like I used too
Drink like I usef too
Moan about my hair and eyebrows like I used too
Stress out like i usef too over silly things like people parking in mum and baby when they are 40 year old heathly man grrrrr
O wait I still do that !!
Take a paracetamol and it actually work like I used too
Listen to Nina Simone with out crying so much I can’t see like I used too - no wait I did that before too .
You get the gist .
Notdown as last chemo today - although that means the next step which is scary …
Truff I hope that you are sorting those pesky doctors out and getting what you need ?
Lissa - you goddess xx
Moff you are a rock and it’s harder to watch I think than go through… a helpless feeling of a loved one in pain is pain without rest xx
Marn - yay yay yay you is whippin it’s butt girlfriend ?Xxx
Flopping my tits out tomorrow in that sun as prob last time …
moijan … no words except 'Hamlet cigars ’ ??
love too everyone…