Hello, Moff, Lissa, Zena, Caroline, Truffle,Carolyn, Uncle Tom Cobley and All!
have had a hectic, irritable and amazing day. MRI and bloods all fine…so headed in again tomorrow to get ‘needled’…was looking for signs of the 'swear day’
now… Zena was Class Prefect in charge of that…and havent seen hide nor hair of her today…
as Head Girl, id better throw in some ‘knickers’ and a b*ggr as the time is running out!..Carolyn was supposed to supervise the playground…and to throw in the odd vernacular…but no sign of her either…so
definitely the naughty ‘chaise longue’ for Carolyn…just wait till she shows up!
hope everyone is just about ok? Especially Truffle, Caroline and Zena xxxx
I know, I’m terrible but I chickened out on swear day & have been in hiding ever since, LOL. ? I’ve no choice but to admit cowardice! ?
Wednesday’s PET/CT didn’t happen… sigh. Fasted for 6 hours before as per instructions & arrived on time only to find the machine wasn’t working!!! ? Not only that, they said it hadn’t been working all day (actually, they let slip it’s been giving trouble for some days) so there were quite a few of us waiting & they were unable to provide an ETA of when the engineer was going to turn up. But said that we were more than welcome to wait until the engineer arrived… if he/she arrived at all. Waited for another two hours until my hunger pangs bellowed “NO MORE, I NEED FOOD NOW!” No sign of the engineer by then anyway. Wasn’t so bad for me, I live in the hospital vicinity but I felt really sorry for a poor young lady who travelled almost 60 miles to get here & had to go home. Such is life, I shouldn’t complain as it couldn’t be helped. Rescheduled for next week. More sleepless nights! ?
Moijan, glad to hear MRI & blood results are good. Such a relief.
Moff, funny you should make that point but it’s exactly how I feel. I hate cancer with a vengeance but I notice when I go to the chemo unit, somehow there’s a camaraderie between the patients. It’s incredible considering the circumstances & so heartwarming.
Hope both of you & everybody else is well as can be. Thinking of you all.
Hi lovelies,
Good news on your scan moijan xxxxx
I’ m ok and at home after a few days on ward with neutropenic bloods …
I’m still in pain and on morphine , had MRI yesterday- cried all the way through it I’m such a wet.
Sorry about swear Day I felt awful and chickened out a bit too
I hope all are doing ok and thinkIng of you all xxxx
Sadly my mums tumour has returned following her surgery last september. Shes no longer a candidate for radiosurgery even tho its a single lesion. they have offered her wbrt or a resaerch trial but im not sure that emotionally or physically its fair to put her through that, given the limited time she has. Just trying to come to terms with this as best we can and support her. I dont know how do you come to terms with it, facing mortality and learn how to live and adjust?
Sorry for such a gloomy post tonight ladies. Will keep on fighting this cruel disease.
O Moff
I’m so sorry for you and you all, what devastating news.
Can your mum get some support for her fears maybe ?
This is a vile disease I hate it so much.
Please share you feelings though we are here for you good news and bad so don’t feel you are putting on us ok xx
Thinking of you hunny
So sorry to hear about your mum’s tumour. Heartbreaking time for the both of you but clearly she has such a brilliant attitude. It’s hard to know what to do with this horrid disease, it’s so unpredictable. Whatever you decide, it’ll be for the best. In the meantime, tears & laughter are good medicines.
Moff that’s sounds really positive I got the wrong impression maybe before sorry.
The trail sounds like a good move but understandable when she feels ok to want to enjoy that and life … the treatments we have are make us feel very rubbish andcto feel ok is marvellous.
So glad you all support and laugh together as lissa said sooo important to keep joy in our lives sick or not xx
I’m ok just started new 12 weekly tac and Herceptin. Then poss double mx to be safe !! Bit worried about that as I’m rubbish with pain . I don’t have brain mets or just stumbled on this tread one day a few months ago and was inspired to write to these amazing girlies … I had first one yesterday and as you see not slept that well, lots of wees … I get very sick so just waiting to see if this is easier on me , and I won’t need a syringe driver which is permanently attached and pumps anti sick drug 24/7 for 8 days … right pain but at least not nauseous…
?? Gotta keep fighting , love to all xx
making decisions like these is very difficult…as its for someone else…like Lissa, I wonder if mum can get help for her anxiety? Counselling can be useful…
the other thing was, whether the doctors feel that the trial could be useful in prolonging her life, is the trial…say treatment versus no treatment…ie placebo? Or treatment with one drug versus another?
I realise if mum wants no details, then its maybe you choosing for her…perhaps you could get an idea from the onc as to his best guess about which path will offer mum more time…
very best wishes for the apropriate decision. None of us has any guarrantees, but mum might possibly feel better if a good strategy is put in place.
everyone is up with the birds! thank you all for your thoughts and kind words, means alot! zena, fingers crossed that this is a kinder treatment for you, you need to look after yourself.
Yes Moijan, I think fighting brings hope. Id initially been against the trial but now im wondering…its randomised so she either gets wbr or the 6 cycles of the chemo drug. Altenatively if she doesnt do trial she gets the wbr and then there are no other treatments for her. Its just she is so very anxious and struggles to manage even gettting herself to appointments, evenn with my sister and I by her side. Having said that, shes managed a mastectomy, cheomo and a craniotomy! she said to me she wants to fight it! Im going to call research nurse today. I seem to go from feeliing okay, to such sadness and fear. I think all part of the journey
also organising some wee trips away…as you say laughter and tears.
Good luck with the new treatment Zena. Keeping everything crossed the anti-sickness works. Makes life that much easier if nausea can be avoided so that system sounds decent even if you have to deal with an extra appendage. Let us know how you get on. Will be thinking of you.
Wow Moijan, that is very kind of you. Puts many things into perspective. Macmillan are excellent.
Moff, very glad to hear your mother has told you she wants to fight it. Maybe she doesn’t want to know the details but that’s an encouraging decision she’s made. Fills me with hope. ?? Must be almost impossible for you to watch her go through this & therefore sadness & fear are perfectly acceptable. Keep heart, you & your sister are wonderful support for her & clearly she cherishes the joy you bring her.
I came into hospital on Monday night with a headache, terrible shivers, roasting temperature. They’ve held me hostage ever since because temp is still spiking. Seems I have a chest infection & am taking hefty antibiotics through IV. Turned 46 on Wednesday so the nursing staff were kind enough to sing Happy Birthday to me & gave me a huge cake so all was not lost. ? They cancelled today’s chemo but I still don’t know if they’ll release me today or if I’ll have to plan my own masterful escape, haha. Seriously though, they’ve been very thorough & are looking after me well so I’ll do whatever’s best.
Happy birthday lissa … a cake ? wowzers lucky you … prob get a custard covered undetectable tasting sponge in Cheltenham lol …
A week in hosp is long , but good you being watched … it’s those darn ( see no swearing moi ) machines … bleep bleep - bleep bleep … arrgh if it wasn’t mine it was someone else’s … all day and night …
I hope you are well enough to leave but if not Luke you say good to be watched and feel safe for a bit x
Moff that’s last post was so touching , I feel for you so much … she sounds like an incredible Mum no wonder you are fighting like this for her, fight on I say all is not lost xxxxx
Hello lissa
Just popping in to say happy birthday …bit late but sent with lots of cyber hugs …xxx
Hope all the a/b that are been thrown at you really help you …just try to rest …difficult in a ward full of people snoring and farting !!!
Carolyn xcc
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