It’s nice to read how a thread that could be depressing is actually quite amusing, so well done ladies for that.
I’m only a primary (only??) but was dx last year, just a few months after my dreaded 50th birthday. I hated becoming 50, how I wished I could turn the clock back and still be 49. Now as I approach my 51st birthday I just wish I had never had cancer and am happy to be 51 and hope to be 81 some day - but realistically, I doubt it.
I yearn to have hot flushes (chemo seems to have put paid to that), and grey hair instead of no hair. I hope upon hope I only ever stay a primary lady but increasingly all my aches and pains make me worry “is it back”.
Isn’t it funny how what we once dreaded seems to be a walk in the park now and anything is better than going through a cancer diagnosis?
Things I’d like to do - swim with dolphins, go on a round the world trip, win the lottery (i’d better do that before all the others), learn to play the piano, learn to ride a bicycle without falling off
and as for young men, I think the smell is testosterone!
Although I don’t have secondaries I do read some of the threads like the other primary ladies, and would just like to say that I take my hat off to how well you all seem to live your lives, I am sure if the time comes I would not be able to deal with it as well as you seem to
Think I can join this discussion as I’m another ‘feeling old’ secondaries person - what a difference 2 years makes??
I’ve just celebrated my 55 birthday in December. Was diagnosed with lobular BC Sept 06, Grade 3 with 16 lymph nodes cancerous, hormone double neg, HER2 positive. Lumpectomy and lymphnode clearance, FEC chemo then radio and started Herceptin, went back to work Aug 07. Thought I was getting on well with life but became ill in Nov 07 and diagnosed with widespread tumours in Liver and amount in spleen. Largest Liver tumour 7 cm. Think it must have been there from the original diagnosis. Herceptin doesn’t seem to be keeping it under control, but it might be keeping it from spreading to other organs - hope so.
Started Taxotere in Jan 08 til June 08 and had a good response - 75% overall reduction in tumours, although I was awful due to side effects of 8 cycles, ended up in a mobility scooter - dreadful but at least I could get about! Am fitter now but unfortunately within two months scans showed the tumours were back to the original size!!! Have started in November on new chemo regime of 5FU over a 72 hour pump, together with Navelbine and Herceptin one week, then Navelbine alone the next week then Hooray I get a Free week then back to it all again!! Am coping OK apart from being very tired, low bloods etc.
Prognosis given wasn’t good either less than 5% in my situation survive 5 years!!! I’ve tried to ignore this as I know we’re all individuals, but it does pop into your mind especially at milestones like birthdays, christmas etc. and at New Year I did think well I’ve already had 1 yr with the secondaries or possibly 2 - who knows how long it’s been in the Liver.
Sorry if this sounds depressing. I never know whether to join in with these chats because I wouldn’t want to upset anyone! but guess we’e all got our problems!!
I’m optimistic and make the most of every day - making sure I do lots of things that I want to do (for a change) LOL, and I’m sure you all do. I just feel I have to get on with it as best I can - what choice is there. It is daunting knowing I’m always gonna be in and out of these awful treatments but as long as I can I’ll accept it - at least it’s giving me some life and I’m still here and intend to be for a long time yet!! Feel cheated though we’ve had no quality retirement time doing the things we hear other retired couples doing! Holidays for us are limited (I’ve got a Hickman line which needs attention weekly so haven’t been abroad for the last 12 months due to chemo etc too) Been to Devon and Yorkshire a few times and that was uplifting.
I have two children and two stepchildren - no grandchildren or weddings unfortunately! Only 1 in a live together relationship, and 1 in a newish relationship so you never know though.
If there’s anyone out there in the Wolverhampton/Dudley area who knows of any good sec support groups let me know please. There doesn’t seem much around here for secondary cancers - or I haven’t found them!
Anyway, best wishes to you all - keep up the fight. Will post again if that’s OK with you all? Good to know we’re not alone and can share experiences.
Take care everyone.
Carol xxx
Hi Carol…(did we ‘speak’ here a couple of years ago? I thought we did but it might have been another Carol)…I’m just posting to say ‘‘keep posting!’’…if we can’t be honest about how we feel here for fear of upsetting others there doesn’t seem much point in having the forum…(and your post isn’t depressing…I know those milestone moments) I go to the Yorkshire (Dales) once a year…makes a change for me to see hills as I live in a very flat part of the UK…we stay in a quiet spot and just chill out…it’s really great to just spend time looking at the view…we stay near some ancient woodlands.
Take Care Carol…Belinda…x
I watched some of the John Mortimer evening on the TV the other day, and caught the end of Voyage round my Father. It reminded me of John Mortimer’s father’s last words. He was an irascible old boot, and was ranting about wanting a bath as he lay dying. John M. pleaded with him not to be so angry to which his father replied ‘I am always angry when I am dying’. Funny line, but has some truth in it.
It somehow resonated with how I feel - but a long drawn out anger. Sometimes living with secondaries is like an accelerated ageing process, with things going wrong with one’s body at an increasingly alarming rate. Then I think, but I am still here, functioning at some sort of relatively ok level compared to others, and who knows, this may go on for years so I better just get on with life.
Whatever, it’s an uncomfortable mental state, as well as having to deal with the physical stuff.
Hi all, - Carol - where did you get your prognosis from.? I thought all of those were thrown to the wind, when you are treated with herceptin, as it hasn’t been about long enough to gather any real stats. Is that right or not? Peacock I will gladly swp you my hot flushes, which I think may be one of the worst things about all this. I really want to go and have adventures, the problem is I just feel so damn sleepy a lot of the timezzzzzzzzzzzzzzhere I go againxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Hi everyone - this is Carol2000.
Gosh, what a performance with this website - it’s taken me ages to find this subject and my last post etc. not very good at it yet!!! LOL. Well here I am at last - but my name is forum member which I don’t know how to change! Gutted - you all seem to have nice pics etc.
Anyway here goes. Thanks for all of your support after my last long post. Belinda I’ve not been on the site long so don’t think we’ve communicated before. Oh dear, can’t remember who asked where I got my prognosis from and don’t know how to get back to posts to find out sorry, but got prognosis from oncologist. Still believing we’re all individuals though and battling away optimistically.
Got CT scans today to check how this new chemo regime is working?? Results on the 18 Feb!! Then off to Paignton on the 20 Feb for long weekend so something nice to look forward to. The Taxotere I finished in June had reduced tumours by 75% overall which was great but all regrown again with about 3 months so am wondering what this new 5FU and Navelbine combination will do? Just a waiting game all the time isn’t it for us all?
Hope all OK with everyone and you’re all coping well with your treatments etc. Look forward to hearing from you - hope I can find my way round again LOL.
Take care everyone. Luv Carol xxx
my list of things to do just gets longer all the time ,but where ill get the money to do any of them is beyond me .shall i take out insurance on life expectancy or not its a 20 yr plan !! maybe not id better spend the money on a trip to brighton to see my relatives and visit the grave of my sister who i lost last march ,looking back i wish we had done a lot of things ,but never did due to all sorts of reasons .now i say to my kids ,if you want to do it and its within your means just go! i just live each day now ,after all ive defied the medics who wernt very assuring at diognosis but im 3 yrs later and still whinging lol!
Hi Jane, you are not alone Im 60+ and feel rather left out,everyone seems to know so much more about chatting on line, I need some tutoring in abbreviation! I was diagnosed with secondaries almost 18 months ago ,its been quite tough going but here and am looking forward to another summer.I would really appreciate some contact with girls with a few more birthdays under their belts,will do my best to fathom out how this website works maybe we can keep in touch, best wishes Eileen
Hi Ladies , at 50+, Feeling 70+ in the joints, this arimidex club is no fun.
Diagnosed primary BC at 43 and 15 years on lung mets.
But good news is early retired so no hassle there and have a new kitten!!! have just had my first haircut in a year, that at least is positive.
I do feel that secondaries, and being retired or out of the work support loop is difficult and generally not addressed much even on this forum.
I have a friend who is recovering from primary BC but feel totally in a different place to her, she is still hopeful I suppose, as I was, now I’m more realistic and trying to prepare for the next blow.
On a more positive note, as I saw in another thread I don’t have cancer every day, or even every other day.So I try to get on with each day at a time. Thanks for reading this anyone, a bit low at the moment.
Just read a post from Ozzie, back in Feb… am still finding my way around the new site too, just learned how to put my mugshot up!! Nice to learn something new when you think you’re losing braincells daily.
on the note of ever growing list of things to do and also inappropriate shopping ( now there’s a thread Ozzie i’m sure would make you LOL!!!) but sorry haven’t a clue about how you find it! I bought a DVD at the supermarket last week, Jack Nicholson and Morgan Freeman, shown on the front laughing. Like them both as actors and tucked my feet up to watch it on a snowy afternoon. Couldn’t believe I’d bought a film about 2 guys with terminal lung cancer, but have watched it twice since then, there are some great lines, and have started writing my own “Bucket List”. Nothing like Jack Nicholson’s but more a reminder of things to look forward too.
‘Secondaries have made me entirely gormless’ is the thread for good shopping, bad shopping any shopping. Join us anytime everyone welcome.
Love Debsxxx