Had typed a post but it bggrd off, so was wondering..,.,,,it is so difficult to log in at present....do we think the site is cyber attacked?
hi ladies, I SO agree with Carolyn, you are very sweet to be concerned about us, but you need to move on
I was treated for my initial, poor prognosis primary in 2001..... And I too had 10/12 years NED.
Imagine how very sad it would have been to spend those years worrying about the future...I learned to sing, learned to paint, became an NLP practitioner and learned loads of other things.,,,,...try to feel blessed now, with another chance, another go at doing the stuff youve always wanted to do xxx
very best wishes,
Yes, not so much naps as sleeps! I can nod off for three hours maybe more at the dop of a hat. Always could nap but since chemo 3 1/2 yrs ago 30 mins is not enough. It plays havoc with body clock since I am frequently then wide awake till 4 am! It's v disruptive and I'm not sure how to best manage it.
Yes, Optimissy, I agree cancer can be a wake up call.I was diagnosed in 2007, having found my lump on my 50th birthday and like Carolyn, I had a long period of NED. Now, as a fluke, I've been diagnosed with secondary bone mets. Cancer taught me to look after myself, it gives you new values. I'm an optimistic person usually and once the little sods came back, I realised it is what it is and know that there are treatments out there to help. Cancer taught me that I am beautiful! It is hard to stay positive - I've just had a couple of low days but then I had them before the cancer. Try to live for the day and don't listen to th st devil on your shoulder. As Carolyn said, treatment for prime cancer has improved greatly and they are learning more and more. I like to think I'm a pioneer for treatments that one day my children will benefit from, should the need arise. X
Thanks Caroline. A very positive post. So glad to hear you have done so well for so long. I'm pretty philosophical about it all most of the time and fears do not dominate, but I think at this early stage post-treatment most of us will have the odd "what if" thoughts now and again, I doubt we'd be human if we didn't, but I certainly aim to appreciate "what is" rather than worrying about "what isn't". In an odd way, my cancer could have been a bit of a wake-up call - I've made a couple of lifestyle changes, and another will occur before the end of the year. Thank you so much for posting and best wishes for your ongoing treatment.xxxxx
Hi DJD - I'm at much the same point as you are - WLE & SLNB, radiotherapy ended Feb and now on Anastrozole. Feeling lucky that it was picked up early etc. but also sometimes have thoughts about recurrance or SBC, and wondering how I would know I had it if I felt well, as I did before diagnosis and do again now. I'm pretty sure that after treatment that is the number 1 concern we all have, and just this morning I was thinking that from now on all future plans seem a bit "provisional". Being, like you, a "glass half-full" type, I came to the conclusion that I am actually in no worse a position than I was this time last year when I had no idea I would get BC, 'cos all plans are provisional for everyone- we really could get knocked down by a bus, that old cliche, or be on that holiday flight that disappears into the sea, and lately aquaintances around my age - 60s -are dropping like flies of all sorts of horrible, non-cancer conditions, so on balance I'd rather have had mine right now. I think these thoughts we sometimes have are normal and I'm sure that over the years as we get our routine annual mammos done they will recede a bit. I guess we just have to get on and book those holidays, get that dog (in my case) and enjoy today. I suppose it's all part of that process that we have been going through. Enjoy this sunny (where I am anyway) Sunday. xxxx
Posting here as it's such an active thread! I'm just coming to the end of active treatment for E+ BC. Had mastectomy, RT and now Anastrazole. Know I'm very 'lucky' as it's the best cancer to have! My prognosis stats are excellent, so why am I so anxious about SBC? My BC was picked up at routine mammogram. I had no signs of symptoms. How will I know it's come back? Family and friends are considering me to be cured, so why do I keep mentally adding, 'for now'... I'm normally 'glass half full' person.
i agree with the others, go on your trip. Wear your flight socks and sleeve( I also have arm lymphoedema) took my o/h to oz a few years back and insited we have a walk every hour and do our excercises!
Was on a jumbo then..and at the back found a whole row of fellow travellers all doing their excercises....also took small doses of aspirin , but now on blood thinners, so cant do that, but next time will still do regular walks and drink loads of water. Xx
i hadnt had a dvt flying, but got one since, whilst on Cape....the trick is to be as mobile as poss and drink loads of water...
Best wishes, enjoy your flightxx
Bandit. Great that you are on this trial and following the guide lines.
I Googled it and it seems to have good feedback and working well.
Goodnews that it is now available on the NHS and so it should be, thank you Pfizer.
Hope all goes well, keep us informed. xxxxxxxx
Hi Bandit, Will take your advice about the socks.
I think I am panicking as I don't know how the bone cancer if going to affect me in the short/long term.
I have cancer in about 7 places down the spine and 3inch dia on my scull.
I have Lymphedema in my right arm so the the sleeve is on most of the day. It's my popeye arm, without the anchor tattoo.
Your right this we should get out and do whatever, live life to the full, but just a bit frightened at the moment.
Hi funnyface, thanks for the info.
We booked a Carribean cruise just after christmas to travel in November, before all this crap started .
It's for my hubby's 70th in November and we are due to fly from Heathrow to Miami, 8-9 hr flight.
After hearing about the DVT problems we both said we should cancel it but it's for a special birthday and he deserves it as he has been my rock. We have until August to cancel it so we will see how things go and decide then. xxxx
Crissy, Happy to hear you had some fun!! People who gets those jabs fly all the time! I woukd just make sure to move my legs around, do some stretches and don't cross them. You and your hubby need to get away! Where are you headed?
PMOL, I had my second jab on Tuesday. I had aches and pains after my first but did not know this may have been due to the jab, just thought it was all part and parcel of the cancer. Today i'm a bit achy but not as bad as the last few weeks, may do a spot of light cleaning.
I had the same set of appointments five weeks ago and it was so difficult not to think about them, but chocolate and wine helped.
Keep us informed on how they all go and have a super break with the family.
Thanks for your support and all of you for your comments, much appreciated.
Today is the first day in the last few weeks I have got up and felt normal (normal for me anyway).
Yesterday I went out with my sister and our husbands for lunch,had a few drinks and laughs, the food was good to and It's the first time in weeks I felt that the gloom has lifted.
Need advice on a couple of things please,
Can I still get my hair dyed, the cancer is in my scull ?
The Denosumab leaflet says it can cause deep vein Thrombosis. We have a long haul flight book in November. Has anyone done a long flight and was it OK, don't know if to cancel the trip for my hubby's 70th now or wait a while?
Hope you all have a good weekend and thanks for being there. xxx
Hi girls! Had the first denosumab monday and so far so good, although I do have some aches and pains but thanks to you all I know that I was to expect this.
Today had the appointment letters for ct, bone scans and onc appointment... trying not to think too much about it but you all know the scanxiety starts kicking in...
anyway, enjoy the sun and cleaning (trying to do a bit at a time) but up to date with the washing and ironing!!! Back working 6hs to trying to keep this up beat. Going away for half term and can't wait! It will be super exciting as the girls dont know where we are going 😀😀❤️
Cleaning and gardening spree across the pond too! Dogs allergres kickerd in big time. Hair comes out in clumps. She has to get a bath every other day with special shampoo. I bath her, put her out on deck. Then I wash the bathroom rugs and her towels. Clean the bathroom, wash her dog bed and vacuum house. Then I shampoo carpets in LR and our bedroom. I keep all other doors closed so she can't get in. This is exhausring! FF
as I seem to be having progression and feel like being honest...today, if you are oestrogen positive and respond to say, Letrozole, then later on the bc is resistant, then it might mean, possibly, that it has mutated and found a new fuel/driver.....if that happens then its quite likely that re visiting it may not work...as in my case......
..if you think about say antibiotics and bugs, if you stop the antibiotic, too early, then the bugs get resistant.....and that antibiotic wont be any use for that bug anymore...
I have been on three drugs, now, where they were doing just fine, until i had a break....then the bc got resistant to them and no longer useful.........all these wretched drugs have side effects, some worse than others......so I personally would rather suffer a little more pain and try to counteract it with painkillers, than give up a drug which is working!
but...I know its not easy, love and hugs...Moijanxx
great news from your scan, that it hasn't spread elsewhere, and I hope this has given you a lift and you are not feeling quite so low. Obviously you are still being treated with tamoxifen and denosumab for bone mets so any anxiety hasn't magically gone away but with any luck you will learn to adjust to your treatment and be able to get on with living, as we all have managed to do with a SBC diagnosis. We are here for support so do keep coming back with any questions or help you might leave, I think many of us find it a good place to sound off and know it's not affecting our loved ones who are also under stress.
Good luck with the tablets, they can keep the little critters at bay for many years, as Janette has already said, I had nearly 5 years stability from anastrozole when my mets were diagnosed in 2008 and, you're right, there are plenty of other tricks available to fool the nasty C cells!
Great news Chrissy! Hoping you can unwind some now! The stress of this cancer is worse than the cancer!!
Glad you had good news Crissy. I know lots of people who have remained stable on tablets. You should get a good nights sleep now. X
Hi All, just to let you know how today went.
After having another sleepless night and geting up with an upset stomach I got to my appointment looking a total wreck.
The news that nothing was showing in my organs, except for a thickening in my stomach wall which could be precancerous and they will keep an eye on it, was somewhat of a relief.
I have to carry on with Tomoxifen and the 4weekly injection of Denosumab until such time that these stop working and the clever cancer gets immune, I so hope my cancer is as thick as S***.
Then as you know, they try something else, ???
It certainly help having this site and reading all you journeys and knowing that there are lots of lovely people out there going thru the sameish.
Love, hugs and kisses to you all, xxxxx
Hi Suze yes I couldn't get my full prescription for letrozole on Saturday at Boots.she said manufacturing problems but she couldn't order me a different brand either(I have accord) so not sure what is going on.didi
Good luck with your results today. At least you will know what you are up against and hopefully will have a treatment plan which you can focus on. We will all be holding your hand today.
I was 68 when I was diagnosed with sbc in pelvis and skull. My breast care nurse could see I was a total wreck and got me referred to the Macmillan psychologist at our hospital. It wasn't a magic bullet but it was a relief to talk to someone who knew about these things. Maybe there's someone like that you could talk to. I'm 70 now and still stable so don't despair, read other people's stories and they will give you hope.
A big hug today B xx
Hi Chrissy, I agree with the others a, hold off on the antidepressants if you can. I think too, once you get results and a plan you will cope better! Chat, rant and scream with us, it might help! FF
Oh, meant to ask. Has anyone had problems getting Letrozole. Went to Boots tonight and they said they couldn't get it and to try Tesco.
Good luck tomorrow Crissy. Xxx
Jeanette, could it be stress? My scalp sometimes gets dry for no apparent reason. I tend to only use simple shampoo now.
Night, God bless everyone
Crissy - just a quick note to wish you all the best with tomorrow's scan results. Will be thinking of you.
Hi girls - so injection was on my arm and was painless 😅A bit of discomfort afterwards but the same as any injection.
Crissy I'm sorry you had to join us (and all the new ones, sorry but too many names to remember and my memory is pants at the best of times!!!) Agree with the rest, try to find something that will take your mind off for the next couple of days... my children 10/11 have managed to do that as they still need feeding and help with school. And I don't thjink it gets "better"... once you have the treatment you fall into some sort of normalcy but it will hit you at the most unexpected times and my best advice is to just cry your eyes out, scream (if it helps and doesnt scare the neigbours 😉) and accept all he hugs and cups of tea friends and family are willing to give! Xxxxx❤️