It all makes you wonder what sort of s**t is going into us , doesn’t it if they can’t even standardise one drug ?
Thanks very much to all who sent words of support this weekend - it seemed as if I’ve discovered a " family" - re-reading my post I feel such a wet.
I’ve normally been reasonably independent and self-sufficient but these down spells have hit me worse than I could ever have imagined, and it’s great to have so much support on here.
You’re right angel about the social stuff when my husband was healthy - we just went out together and it never bothered him at all that nobody else was with us. It doesn’t hit you for a while, when you’re busy getting everything sorted after their passing, but there sure is an enormous hole now, as well as where my daughter should still have been.
I felt too wobbly to do much outside, but even the sight of the sun does you good even if you’re not allowed to expose to it too much. With any luck Days 6 and 7 will also dawn bright, and if I feel OK I’m going to Tesco. ( S*d low immunity week ! )
Goodnight all and hope everyone else in the grips of the lurgy or anxiety about what tomorrow may bring will sleep well - regards, Ros.
after reading various posts about tamoxifen if I’m on that Im going to be asking to get put in the nolvadex-d one as that seems to have the least side effects, and am just going to always make sure when I go to chemist that am getting same one even if I have to put in a special request,think it will be bad enough being on this never mind mucking about with different brands each prescription.
I’ve got a mirena coil so have been period and symptom free for four years… will see what onc has to say about that, then will get onto the subject of what to do re ovaries,zoladex to switch them off or just get them whipped out and be done with,don’t know enough about implications of either at the mo so will keep you posted on what happens.
I’ve got a circle of very close friends that are spread all over the place but no-one can understand what I’m going through better than you all on here,really don’t think I would have coped half as well without the help and support that you all provide,ah it’s good to talk/moan/rant/ramble(delete where applicable).
Ah well,off to zzzzzzzzzz hope you all sleep tight.
Morning All, sounds like a busy week for everyone this week so thinking of everyone and hoping all goes well.
I was quite envious of you Sal and Sandra pottering in your gardens, mine’s a wilderness at the moment, I suppose I could say I’m helping the wildlife, having come eye to eye with a huge toad yesterday it doesn’t take long for the critters to move in!
Love the tatto design Carole and Gennie, will look forward to seeing the photo’s (no cheating and putting a transfer on ;-). Great to hear you are feeling better Gen. Sorry for all you guys suffering with eye problems and hope they improve soon.
Glad to hear you sounding a bit brighter Ros, as everyone else has said we’re all here anytime you want a cyber hug.
I’m seeing the Oncologist this Wednesday Carole to see what the next step in treatment is, hopefully they won’t start anything until this wound problem has healed. I’ve heard good reports about the Onc who is a lady, having read about some people’s Onc that’s reassuring. I’ll be glad to know what path I’m on anyway, Sandra is it your first visit to Onc too? I wasn’t sure. I too have the Mereno coil as I was Peri Menopausal a year ago when I went on HRT + coil (don’t start me on that one!) I hsve had a blood test to see what stage of menopause I’m at now so should find that out Weds too.
Glad you had a good night out Jane, it seems like another world now :-). I too am normally in bed by 10 at the latest!
Yes, loved reading your Blog too Theresa, love the bird box!
I’ve rambled long enough so better go get some breakfast, hugs to all and hope it’s a good day for everyone.
Di x
Morning everyone…
Hi Di 
Good luck vibes to everyone with treatment and appointments this week…
I went shopping with Nigel to Sainsbury’s yesterday and a woman managed to bang my bad arm with her trolly really hard…
So had a bit of a bad night with that.
Theresa x
Ouch Theresa! Careful with it today.
I had a look into the ovary thing Sandra as I was wondering what happens if the chemo or tam don’t put you into the menopause. I’m due an appointment with the onc between now and CMF and I’m going to ask, but so far: the oopherectomy can be done by small incisions or needs a major operation so it needs to be considered carefully; if the docs think it’s needed they can consider ablation, eg the surgery bit, or radiotherapy on the ovaries, or the zoladex you mentioned to switch them off; however, we produce oestrogen in fat tissues and adrenal glands as well, and progesterone in the adrenals I think it is, so taking the ovaries out reduces the hormones but doesn’t eliminate them; for post-menopausal women there is an aromatase inhibitor being trialed which blocks the stuff produced by fat and adrenal. I presume that would be a possible option after ovaries were removed.
A friend who’s currently on tam has never had the oopherectomy or anything else of that ilk discussed with her, and my GP has never heard of somebody having the ooph for bc. I’m wondering when and why the docs think it is or isn’t suitable. Must remember to ask.
Ouch, Theresa! - I think that deserved an “accidental” ram to the ankles with your trolley! Maybe not, might have ended up with a severe case of trolley rage!
Busy week by the look of it, good luck to all with treatments and results. I’m counting down to Thursday, seems odd to be looking forwards to an op so much! Will be decidely flakey on Wednesday evening though.
Carole, spot on with your comment re tamoxifen. Once a patent runs out on a certain drug, generic versions can be made (cheaply, as the original manufacturer had to recover research costs, the originals were dearer) The pharmacies will stock whichever generic they can get cheapest at any one time, hence the change every time you pick up a Rx.
Although the main active ingredients are standard, the other parts making up the tablets can vary. This can make a difference to their tolerabilty. A fried of mine who went through the BC experience a few years ago had less side effects with Nolvadex, my understanding is that this is a “branded generic” - and if your prescription is for that named drug, the pharmacist cannot switch it.
We have a new addition to the family - a 2002 Ford Focus with 23,000 miles on the clock! EBay - fantastic buy, absolutely immaculate and not too far away. James is well chuffed, as is his little brother who now inherits Fiesta. I’m now going through the stress of having a newly passed driver going out in car by himself - tried to tell him maximum speed limit for newbies is 15 miles an hour…!
Hope everyone has had a good weekend, British Summer Time - lovely evening here last night, if a bit chilly. I help run a local riding school and teach on Sundays, it was an absolute joy yesterday. The work is hard and physical (beats going to a gym for me, I was never really into that) but if the weather is fine, it is great in the yard, keeps me busy!
Hope everyone is feeling OK this week,
Take care
Lizzy XX
Lizzy - good news about the new car. Will be thinking of you this week getting ready for the op… I had such a long wait - the op was exactly 6 months to the day from my diagnosis - it was hard to believe it was finally happening.
Morning all
No work for me today. Work phoned at 10pm last night to say don’t go in because one of the chaps I work with has just come back from Florida with a stinking cold and everybody is now streaming. Nice of them to warn me and I’m staying away for another couple of days.
My eye is a bit worse today, so I’m not sure if the drops are making it worse or better. I’m allergic to some eye drops, so it might be that I am just making it worse by putting the stuff in there or it might be that the infection is just a tenacious beggar. I’ll give it another day and go to the docs if it’s not better. Actually if I wait til Wednesday i’ll get a free prescription lol!!
Interesting commments about generic tamox and varying side effects. I’ll store that for when I get to it. Also I’ve been wondering about the oopherectomy possibility. My Onc did mention it when I first saw her but said it’s something to talk about once my treatment has finished. My sis in law who had BC a couple of years ago is on tamox and zoladex because she was pre-menopausal. I’ve also got a mirena coil, but I do still sometimes have the usual symptoms and light periods. Mind you, the one I’ve got is nearly 5 years old now so I don’t suppose there’s much hormone coming out of it any more. My Onc was adamant that I should keep it, Sandra, even said I should get it replaced later this year when I get to 5 years. Be interesting to hear what yours says.
And {{{Ros}}} - we’re all here for you flower. You’re never alone when there’s an army of Storm Riders around.
Brrrrrr, it’s more like winter than blooming summer here,get the woolies back on…
Yup this will be my first visit to onc ,who is a young lady I have heard,am going doolally as have lost my sheet of paper that have got all my questions on…hope the dogs havent eaten it !
I was the same waiting for my op,it couldn’t come quick enough,and honestly the worry of it all before was worse than the actual op itself.Apart from my sections had never had op before or general anaesthetic and I just expected to be back to “normal” in a week…lol didnt happen in my case,it all takes time,listen to your body,the only thing I did religeously were my arm exercises,I had a set back of my boob exploding but now exactly 5 weeks post op ,just a tiny bit tender can swing my arm about no prob and have healed up nicely,am just feeling a bit weird as think this might be my last drug free day for at least the next five years or so…ho hum.
Well done with the new car,I got rid of my lovely hyundai santa fe last year as hubs was getting a new big car and the cost of having two big motors wasn’t justified and have got a little toodle around toyota yaris,but hey only pay £35/yr road tax and get 66mpg so have made a huge saving !
Am clearly pharmaceutical genius!
Way to go Gen! Days off, that’s what we want. Mentioned my eyes to the chemo nurses this morning at bloods. They have no answer. I’ll see what the GP says. That’s me got my first CMF appointments set up too. Feels like at last I’m making progress through this. It goes on for ever!!!. Just get this final Epi week over with. Somebody remind me tonight to ask the nurse tomorrow what kind of cancer I had. I keep forgetting and feel I ought to be more interested.
Sounds like a great day yesterday Lizzie. The stables down the road had everybody out and about here too. Bit windy, but nice. Congrats on your new family addition! And you’re right though, getting the op out of the way is such a huge relief on a hundred levels, it’s definitely something to look forward too, in a strange way. 
I’m a few months of starting the tam Sandra, but I know what you mean about that 5 year bit. When I was getting my results and treatment plan my heart sank just a little bit when she said hormone +ve, but just think of it as a groovy batch of Scooby Snacks and an excuse to get an extra spoonful of sugar in the morning (or maybe Ms Poppins could substitute manuka honey).
mmmm manuka honey, blooming my co-op charges £9.99 for a jar ,my hubs just about had a heart attack when I asked him to get it a couple of weeks ago lol,he doesnt understand why it’s so expensive,right enough neither do I … have to go and read up ,is it as it comes from new zealand or as it’s antibacerial load is so high,and why is it so high …? Oh dear,am in mad question mode now…what’s my name again…?
Hi all
In case you think Calam has been keeping a bit quiet recently, I should warn you she’s just been out of earshot, practising barn dance tunes on her old concertina ready for that Easter Fair. She used to do a lot of that there country dancing stuff in her mis-spent youth, so watch out for her grabbing an unsuspecting cowpoke or two and whirling them round in a polka or a schottische!
Meanwhile I’m feeling very, very lucky so far, still no nasty SE’s, but I know moulting season is nearly upon me… (10 days since first FEC) I declined cold cap, as quite happy to let 52 years-worth of limp, fine hair go bye-byes in the hope that it might grow back thick and curly.
BTW - got my package of goodies from Bohemia Fashions ready for the aforementioned moult, and must say they are extraordinarily efficient - 23 hours from putting order thro on Net to receiving the package at my door! One item is a fake fringe that attaches to hats etc with velcro, and is exactly the same shade as my own hair, but much thicker so going to ask my hairdresser to trim it and take some of the fullness out of it.
Love and hugs to all those having stuff this week,
Rosie x
Hi there Calam, I wondered where you had got to. I’m rather fond of my jersey cap bandanas from bohemia fashions, they’re very easy to just shove on and don’t feel as oppressive as the scarves.
I don’t understand what’s meant to be so great about manuka honey other than the price either. It’s 10.99 in Sainsburys and I’m shovelling it down on toast every morning. Whether it’s making any difference at all I have no idea. Maybe I should stick some in my eye to see if it helps.
Finished reading my book today and had an email argument with hubby over whether or not we can go away this weekend. It’s my “good” weekend before chemo and the only weekend he is not working at least one day between March and June. He’s even working Good Friday and Easter Sunday. Just a long weekend in Norfolk, I wanted, nothing grand - it’s school holidays and we could all do with a break. He says not. He also has a few days off early next week, but now claims he has work which he needs to do at home. You’d think recent events might have given him the kick up the arse to realise what really matters in life wouldn’t you? Or maybe it has and what he’s realised is that work is what matters most. Either way I am heartily hacked off and considering just taking off with the kids myself with 2 fingers in the air.
Humph.
Oh Gennie I do think he is being a bit unreasonable maybe you should stick the Manuka honey in HIS eye instead
Just want to tell you all that my leg and I have finally been discharged from fracture clinic after nearly 9 weeks.I now have a fetching bent wood walking stich which is most appropriate for an old one.
Love Vxx
Great news Val that you’re done with the clinic, you’ll have to get one of those fancy flowered walking sticks I’ve seen about
Gen, what a shame your OH won’t go away … I’ll go!!!
I have similar reactions when I suggest doing anything … as you say they should see what’s important…still, they are from Mars
Di x
Take it easy on that trampoline Val !
Gen, leave the kids at home with your hubs and take off with one of your mates, just make sure you charge everything to him. Some men just don’t have the sense or brains they are born with. My hubs is now a management consultant done his MBA and all sorts but can he say “oncologist”…no he beeping well can not ! it drives me mental when he is speaking to people, we have "ornicologist…orncologost oncolectist " etc etc Doh, how difficult is it to get that word correct … oh and while we are at it…how difficult is it to put pots and pans away so they are sitting neatly inside each other…too difficult by far obviously as every time i go to get a pot out lately I open the cupboard and half of them land on my feet as they fall out due to being just stuffed into the cupboard any old way !
Glad to hear you are doing so well Rosie,am really pleased for you,long may it continue !
Had to laugh ,my youngest just aked me who is John O’Groats ? Hmmmm who indeed ? ? ? Have to add that to my list of questions that need answered !
Hey Gen, I think you should definitely go away on your own. Flex those two fingers, girl:D It may give him the jolt he needs - blooming workaholic! We’re doing selfish now, remember? Glad you’ve got a couple of days off work. I hope the weather is as good for you as it has been here today - wall to wall sunshine!
Got some weeding done finally today, but now I’m paying the price. Anyone else get shooting pains in the boob if you do too much? I seem to always get it when I’ve been gardening. And the shoulder is really cr*p today - I had a major wobble over it this morning when I was doing my exercises. More pain and less movement than yesterday - how does that work? I feel like I’ve gone backwards 18 months and I’ve definitely lost all the benefits I gained from the manipulation - all that pain for nothing. GRRRRRRR. I’m seriously considering whether to go back to the job at all after all this. What with the shoulder (which if I’m honest I’ve been struggling with at work off and on for the last 3 years) and the fact that I keep being told to avoid cuts, scratches etc, which are an every day occurance for a florist. I think I’m going to try and discuss it with my GP. Don’t know what my situation is re benefits if I give up. I even rang an agency that I have used in the past and they are starting to look out for things for me. Having said that though, there’s not much out there. Moan, moan, moan. Sorry, I’m done now.
Val, I’m really glad you been chucked out by the fracture clinic. I hope your stick has a lightning logo on it! I’m thinking it could be a useful weapon too:D
Rosie, glad you’re feeling ok.
On the tamoxifen - I just think of it like this. My cancer if very hormone sensitive. Tam blocks those hormones, so that’s another weapon in my arsenal (and it’s a very small tablet). I haven’t had any major side effects so far. Just tired last week and a bit headachy - so far so good. One thing that has occurred to me though. Why five years? What happens after that? Are you more likely to get a recurrance in that time? Why didn’t I think of that before I saw the onc? I did however ask the onc what would happen if I carried on having periods and she was of the opinion that it’s not worth doing anything, as there’s not enough evidence stopping them is worthwhile. Now that may be because of my age, or it could just be her opinion. Who knows?
Sandra, that made me laugh. I think your hub needs a lesson in life skills. Surely there’s a university somewhere doing a degree course in pot stacking?
well girls, feel like I’ve been outa town a bit lately…went to the seaside - on my own on the train to see mum at the static and we went out for tea to the pub on sat, came home sunday…I seem to have lost track with all your appts and things so feel free to mention again as neccessary!! Good luck with with ornithologist appts too - spread the wings ;0)!! And keep us posted…
I’ll join in on the period front - what fun, mine was due just before chemo and sort of arrived but sort of didn’t - wasn’t really a real one me thinks but who knows…lets see next time, no complaining though, no pains etc…
Val - brill re you leg, I agree re a stick with attitude like a flowery job - and Sandra I happen to know the trampoline has been banished with a few choice words following it by the sounds of it!!
Ros - hope you’re feeling a it perkier and sending (((hugs))) for all who want them!! Rosie - you sound like you’ve been a bit like me with the chemo…fingers crossed it carries on like that eh?! Mary x
lol the only wings that will be flapping will be my bingo ones ! Glad you ha d a nice sunny daty yeserday Mary it’s yuk here today,all cold and wet and drizzly.
Glad to see you back in the land of the walking Val - just don’t use the stick to stir the stew !
Glad others had a good weekend but it seems that sometimes OHs are more trouble than they are worth.
Thought today would be nice - I’ve been shivering most of the day.
Tesco had to go out of the window - after a steroid - induced lousy night I woke with lumps in my throat which have made me feel like heaving all day, and just don’t fancy eating.
If I sent a message in capitals at work, I would have the corporate E-Policy quoted at me - let’s hope that no-one here objects to
I HATE ******ING CHEMO !!!
Good luck to anyone starting the process this week , and congrats to those that have achieved - regards, Ros.