Member
Posts: 269
Registered: ‎16-03-2017

Re: July 2017

Have a good day out x
Member
Posts: 269
Registered: ‎16-03-2017

Re: July 2017

[ Edited ]

Missy that’s great having a friend donate that to you.  I think you need a TV in the bedroom and a goose down pillow. As Angela says get the occupational therapist to provide lots of free aids to help you in the house.  If you are on immunotherapy there are very good things coming out of that, even cures according to the news.

as Angela says maybe HER drugs will help too. 

 

I’m off to buy comfy shoes today.  GP doesn’t know if it’s Letrozole side effect or plantar fasciitis or something but suggests comfy supportive shoes amongst other things.  Something else to make me look old 😕👞👞👟

 

i wanted to holiday abroad this year but insurance is just too complicated as I’ve had lots of other health problems in last five years and they want details of everything 😩.  So I have organised a bit of a trip for our last week holiday of the year.  We are going  to Windsor to see the castle etc for one night, then beautiful Bath for three nights, where I’m meeting a few chemo buddies, then on to my favourite spiritual home St Ives for three nights.  Can’t wait. 😀🏰🕍🏖🚙💜

Member
Posts: 541
Registered: ‎15-04-2017

Re: July 2017

Morning ladies.
Missa you have some very generous friends which speaks volumes about how well liked you are. 😀
Hoping social services have sent in an occupational therapist to sort out your equipment.
A telly in the bedroom sounds like a great idea. I’m enjoying better call Saul on Netflix at the minute. Also a thumbs up for peaky blinders.
I had a read about your trial. Sounds good. It is an immunotherapy drug so 🤞 you’re on it. Bloody brilliant news about your breathing. 😀😀😀
When I was first diagnosed with liver mets they biopsied to see if the cancer receptors had changed. Apparently they do in around 30% of cases.
This could hopefully be beneficial to you as you’d become eligible for other drugs. 🤔
Hoping everyone else is good today.
I’m off out for lunch this afternoon with my mam and two daughters. Happy days. 😀
Member
Posts: 1,854
Registered: ‎29-04-2017

Re: July 2017

Missa that is interesting about the her 2 does that mean you may benefit from herceptin now? Im pleased the maggies are contacting re the aids and adaptions to your house it will make things so much easier for you getting about im pleased to hear that your pain is settling a little and you are persuasive enough to get a tv in bedroom are you watching anything giod at the moment i have been watching box sets on Netflix my son has an account so i got an amazon fire stick so we can use it too im currently re running Peaky Blinders which i have to say i could watch over and never get tired of it fab programme also got into the Crown decided to see what all the fuss was about its really good its hard to imagine prince Philip in his younger days but i reckon the guy who plays him Matt thingy from Dr Who has got it spot on!!!!!
That was lovely of your friend to give you that voucher treat yourself to seem really nice pillows i love the goose down ones expensive but i love them x
Very good to hear they are keeping you on the trial too xx
Take care xxx
Member
Posts: 71
Registered: ‎04-07-2017

Re: July 2017

Hi all, how are you doing today?
An interesting appointment today with my clinical trial nurse and a random onc covering for the head of the trial. They did a biopsy of my groin nodes as part of the pre-trial testing and the results have shown that I now have small amounts of HER cancer cells mixed in with the triple negative cancer cells. Apparently it can mutate into a different type. I was worried about them pulling me off the trial but they're continuing as is for now.
Still in pain but it's bearable. Interestingly the little wheeze I had when I breathed in deeply seems to have gone, which is hopefully a good sign for my lungs.
Got in touch with social services as Maggie centre advised me that they're responsible for stuff like wheelchair ramps and bath lifts as really starting to struggle to get in and out of the bath. Husband been washing my hair with my head over the bath and I've been doing a sink wash but not the same as a proper shower. I feel the same age as my gran and she's almost 70...
Friend donating a £300 amazon voucher she won in work to me so we can spend it on something nice. Husband trying to persuade me to get a TV for the bedroom. I've said no since he moved in with me years ago but given the amount of time I'm spending in bed atm I'm softening to the idea although I might insist on some new pillows and a cup holder for the wheelchair 😂
Shi Community Champion
Community Champion
Posts: 3,247
Registered: ‎11-10-2017

Re: July 2017

Patricia prijatel not Patricia privately 🤣😂🤣🤣sorry text gremlins about ladies 💕💕✨✨Shi xx
Shi Community Champion
Community Champion
Posts: 3,247
Registered: ‎11-10-2017

Re: July 2017

Missa ❤️❤️❤️😘😘😘🤞🤞🤞🤞the trial is success 🙏🙏🙏🙏 M D Anderson in USA have been making great strides for tn and also Patricia privately who is a tn survivor has a good blog for info 😘😘😘hi tatyana how lovely you spent some time with grandson, they are sunshine for the soul aren’t they😘😘 I was in a shopping centre and there was a car in there, someone’s little boy snook in the car and tooted the horn 😂🤣😂🤣😂it echoed really loud round the shopping centre, the mum looked so embarrassed as she took him out and away from the car with everyone watching and the little boy was just laughing his head off 😂🤣😂🤣😂🤣children’s laughter there is nothing that sounds as beautiful is there 😘😘😘💕💕💕✨✨✨Shi xx
Member
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Re: July 2017

Missa lovely to hear the news of your little neice who is arriving soon what a lovely name lily and a wedding is always guaranteed to make you happy isn't it!!! I echo the girls re the trial im sending you loads of positive vibes you are a 💪 lass and enjoy your nee soon to be Auntie Missa status bye the way can i also say your husband is an absolute gem where did you find him!!! Seriously though Missa i have told you before he sounds so wonderful and he is your rock so enjoy your, you him and the cat cuddles on the sofa
Michele 👭
Member
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Registered: ‎16-03-2017

Re: July 2017

Missa I’m pleased you have a new baby and a big wedding to look forward to. A positive focus is good and I pray you will be around for a long while yet and watch Lily grow up. How old are you? Is immunotherapy an option for you?
Have a good Sunday everyone.
Member
Posts: 541
Registered: ‎15-04-2017

Re: July 2017

Morning missa.
It’s great that you have things to look forward to. We have to try and enjoy every day so this disease takes as little as possible from us.
I’m not religious but I’m asking the universe to please let this clinical trial work for you. Don’t give up.
I’m also on the American inspire site where there’s a lot posted about clinical trials and I know some of these are having success with TN ladies. I’m not giving up hope that yours will work for you. You’re such a positive young woman with a good sense of humour and I’m sure this is helping you through the tough days.
Hang in there and try to take some pleasure from every day. Scary as they can be.
P.S. your husband sounds fantastic, you definitely picked a good one. Xxxxx
Member
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Registered: ‎30-05-2017

Re: July 2017

Missa, I'm so glad you have some good stuff to look forward to, a wedding and a new neice! And Lily is such a beautiful name. You sound so positive in spite of all the cr*p that this horrible disease is throwing at you. I know how hard it can be, so well done you! Every happy moment feels like a victory, even if it's someone else's happy moment!
Member
Posts: 71
Registered: ‎04-07-2017

Re: July 2017

Thanks for the kind words ladies.
I've been liaising with the macmillan palliative BC nurse who is a whizz with pain relief apparently. She's tweaked my meds a few times and aside from a couple of really bad days I can tolerate some discomfort. They had me on oramorph but it made me really spacey so switched to oxynorm. They're both opiate based and whilst they do work for pain, they don't half mess with my digestive system!
It's been chucking it down all day here so just had a sofa day with the cat and husband. I really don't know what I'd do without him. I need help getting dressed, getting out of bed and in and out of the bath. He's doing all the cooking and housework too. Luckily he's self employed so can do this but the measly as hell DWP will only pay him £280 A MONTH for 140 hours of caring. £2 an hour. Isn't it a joke?
I guess I'm lucky only having a very small bust. I lost 23lbs between Jan and July this year (the majority I'm going to say deliberately) so my silicone boob is now too big so I'm sticking with my knitted knocker. Although I've mostly given up wearing a bra since the underband digs into my rather tender ribs at the moment.
Somewhat relatedly, I did get rather drunk at a house party a couple of months ago and decided all my closest friends needed to see my scar and so just unhooked my bra and whipped my top up 😂 luckily we're a very tight knit group and everyone was very supportive!
I don't know if it's of any use to anyone but I'm on the Impassion132 trial at the Christie.
Tatyana, sorry to hear about the picc, your poor veins are having a hell of a time. They've insisted on a port for me since the trial requires a whole host of additional blood tests and I'm down to one arm owing to the lymphodema. I refused the final blood test after I'd had treatment last week. Bless her, the nurse was so lovely and she tried her best but it just wasn't happening and I was miserable and in pain so just went home. I hope they'll replace your picc with a port ASAP. They look so much simpler.
So for some good news, my second niece is due on the 5th Nov and I am determined to cling on until then to meet her. Me and my husband said if we chose to have kids and had a girl we'd call her Lilth Rose, Lily for short. I don't know if I ever told my sister this but my niece is going to be called Lily. My sister got engaged too, was meant to be a long engagement but they've brought the wedding forward to 24th Nov this year so I can be there. Lots of good stuff to look forward to.
Member
Posts: 1,854
Registered: ‎29-04-2017

Re: July 2017

Well girls i hace a ff to g on my good boob and naughty boob is a ee to f so i now call them little and large and yes the after effects of treatment even as a tn lady with no extra drugs my neck thing according to my neuro doc could have been made worse by the radio therapy his words and wants to check density of my bones after a chemical menopause my gift from chemo!!!!
Heres to scarfes floaty tops wonky titties and oh dodgy hair haha enjoy the weekend everyone xxx
Member
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Re: July 2017

That is big Carole. 😳 the rest of the women in my family are f cups so I suppose I’m lucky. 😀
Here’s hoping your get your diep soon. 👍 x
Member
Posts: 269
Registered: ‎16-03-2017

Re: July 2017

I’m a 38dd, or I was when I had two!  Going to ask the plastic surgeon to reduce me down to no bigger than a C.  Weirdly I kind of resent my big droopy surviving boob because I have to match up to it.

Member
Posts: 541
Registered: ‎15-04-2017

Re: July 2017

Yes Carole. The effects of bc treatment are lasting. I know what you mean about the boob. I’m having the most terrible hot flushes and this massive silicone thing stuffed in my bra is doing me no favours. 34D. 😳 And I really miss having two. 🙁
I guess that’s another thing I just have to put up with. 🙄
Haha. I definitely think we can cope with a few swear words tatyana. And I think we probably say a few more than other people, even if they are under our breath. 😀
Member
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Registered: ‎30-05-2017

Re: July 2017

Carole, I'm with you with the big prints and long scarves -- so glad the weather is a bit cooler and I can wear nice drapey scarves or long cardies without getting boiling hot! Nobody tells you how uncomfortable a falsie is.  I'm still very sore in that area (swollen glands etc due to secondaries and also inflammation from the chemo sometimes) so I can only cope with a softie. No matter how many different bras I try, I can never find anything that is comfy all day. I honestly wish I'd asked them to do a boob reduction on my good side at the same time, so I wasn't so lopsided and could just go bra-less all the time! Hey-ho.

Member
Posts: 764
Registered: ‎30-05-2017

Re: July 2017

Angela, I think we can cope with more than a few rude words after all we've been through, don't you?!! ;-)

Carole and Mishy, totally understand your feelings, I had 15 good years after my first diagnosis and all that time it was at the back of my mind somewhere that it might come back. Having said that, as time goes on you do worry about it less, and it honestly does help you to enjoy life more, because unlike most people, we genuinely understand that hey, we're not here forever, only for now!

So Carole, enjoy your celebrations, and Mishy enjoy your lovely granddaughter.  How quickly a year has past, surely she was only just born a few weeks ago! Saw my six-year-old grandson last week, such a boost to the spirits getting a guided tour from him of his favourite playground, complete with descriptions of what you can do in the sandpit, the pirate ship, etc!

All the best to everyone, with and without secondaries, hang on in there and enjoy the sunshine...which we just had a very brief glimpse of here, even though it's only just stopped raining!

Member
Posts: 269
Registered: ‎16-03-2017

Re: July 2017

Angela you’re right it is a **bleep**ty disease. Even without the secondaries we are left with many problems. I’m seeing GP on Monday to see if I should stop letrozole for a few weeks and see if it helps my many side effects like my feet. People don’t understand that and say well you wouldn’t stop taking it. They think it gives me a guarantee of keeping cancer free and have no idea how bad I feel sometimes. Well I probably will continue with it for the extra percentage it’s adds to my chances but I’d like to know how many of my side effects are due to it.
Also I have a bad sore at the moment at my mx site because the surgeon left a load of folded skin after removing rejected expander and with the silicone prosthesis it gets very little airflow. But nobody understands that I am hoping for Diep recon. They just say you wouldn’t know I’d had a mx. Well I would with the lopsided, different sized uncomfortable false boob. So now I’m walking around as a uniboober to let the sore heel. Thank God for flowery shirts and long scarves x
Member
Posts: 541
Registered: ‎15-04-2017

Re: July 2017

Maybe you ladies wouldn’t of been able to cope with a word that is similar to poo. 🙄😂