Hi Feenix, I still lurk around the site and often visit the newly diagnosed bit to offer a hug, it takes me right back to how I felt, I read back to my first post... We've come a long way haven't we
I’m amazed I remembered my log in details as it feels like I haven’t been on here for months.
Looks as though we are all getting on with everyday things as it’s quiet on here now...which is a good thing. I’ve had a little look around the site, mainly on the surgical side as that was my forte last year. Reading the new posts reminds me of last year.... I might take a look back on this thread just for old times sake.
I just realised that I have had a one year anniversary.... had my last surgery in August 2018.
Hugs to all
I do hope that gremlin has been given the boot by now. They do pop up now and then don’t they....wish they wouldn’t but every once in a while something niggles the back of the mind then it’s suddenly full blown and out of control. I like the quote...very apt.
I’ve not been on here for a while but I like to think everyone is getting on with the everyday things. Im conscious of the fact there are also those who are continuously joining the site, at the beginning and after diagnosis, having treatment, decisions to make etc.
I was out gardening yesterday making the most of the weather and getting a bit of exercise. Looks as though it’s going to be another good day.
Hi all, just thought I'd see if anyone around....
Glad to see everyone must be busy enjoying themselves..
I've been having a gremlin on the shoulder day … but found a lovely quote somewhere on here, not sure how/why I found it but it really hit home as I was panicking and Googling... it just read...
"Out thoughts are not facts.. they are just thoughts!" and I thought I would share it with you all. great words.. I will try to remember that...
Love to all
Well done on getting the plan into practice and doing some gardening.. very therapeutic I find. The biking is going well, really enjoying getting back in the saddle, only doing short hops to the shops and back but have a larger ride planned for Saturday with some friends, taking in some local pubs and having a meal too, not sure how the legs will fair up but I'll give it a go. Its just nice to feel like me again and do things I used to do .. got to be a good thing hey.
Hoping to get a walk in tonight, providing its not too hot, its very stifling here today.
Enjoy your gardening
I tend not to relate to last year toooooo much apart from time of diagnosis, start of letrozole and last surgery ... 😂 . So next month I’m a year from end of treatment (which was all surgery). Know what you mean .... anniversaries rule ok. I’ve also had time to think about things this year, digest implications more, let things creep into my thoughts and I’ve let them niggle on as I wasn’t on top of my coping ‘strategies’ ... I wasn’t exercising as much, stopped crocheting, not gardening as much, just not really interested in anything, going through the motions etc etc. So today I’ve got my plan, and myself, in hand. Been out gardening to start with .. need to be productive, and I’ve done my exercises and a bit of yoga. It’s great that you get out walking with the ladies and that you’re able to talk about stuff and be educating them at the same time. You’re right about having a break away from BC related stuff at times...rebalance.
I have to say I do feel more like the old me. I guess ups and downs are part of the recovery.
Well, the weather is still good so I should get back out and do a bit more gardening then I won’t feel so bad about watching some tennis. How’s the biking going ?
Hello lovely Feenix,
Yes this page has been quiet of late hasn't it. Sorry to hear you have been feeling down of late, its a funny old business isn't it. I go up and down like a yo yo sometimes. Its really good that recognise triggers and what to do about them. I realise I have to step away from BC related stuff sometimes otherwise I get fixated on things, just an advert or story in the paper can set me off. I have a talk to myself.. out loud sometimes too. and discuss the problems with myself and then give myself a stern talking too and let it go. Helps a lot of the time, sometimes I just have to cry and let it pass. I think upping my exercise has definitely helped, it really makes me feel a lot better if I can do something when it hits. I walk most nights with a couple of ladies and they are happy for me to blab on about stuff, in fact they have learnt so much about breast cancer they are ever vigilant for lumps and bumps now and know to ask about dense breast tissue.. so at least that's good.
Do you think this first year is particularly hard as its a first for every anniversary... I found myself looking at my diary from chemo and thinking.. this time last year I had my head shaved, this time last etc etc. Hopefully next year it won't be so bad.
I like your phrase "just let the thought go by".. that's what we were told at Hope, allow the thoughts to come and go like traffic and watch it go passed!. Nice analogy.
Hope you feel more refreshed and happier to move forward again...
Ages since I’ve been on here.
Hope everyone is doing good.
Ive been struggling a bit lately ... have found this year more hard going than last and even my OH is saying he’s worried about me. After a leaky eyed session on his shoulder saying what was worrying me, I looked at psychology notes from the Moving Forward course last year and recognise that my threat system is active resulting in anxiety/low mood. Recognised myself and could link in with ‘behaviours’. I need to get back on track ... get better with exercise, plan activities to embrace holistic approach etc ... get my positivity back. It’s surprising how these things gradually creep up but it was my time to dip. I should get back to my norm so when something triggers the what ifs I can look at it for a short time and put it back in the box ... or just let the thought go by and let it go as I used to do. I feel better just by acting on this. I’ve also started to take my Letrozole on an evening which I’m hoping may help with tiredness. It seems to have helped ... this is pre my light bulb moment of today.
Sending positive vibes to myself and everyone on here.
How are you all doing?
Pleased you’re doing well Linda .... and back to work. Great you’re planning holidays and short breaks too. Hope your chemo group gets a meet-up organised ... Jem must be in your group. Plenty of time to get things arranged.
Trigger thumb is not painful but as I saw it is common when on Letrozole I want to avoid it getting worse.
My wbc's and neuts were both low and should get back to normal so I will get my blood checked next month again. Not sure what they can do if not back to normal but I would like my blood fully checked as he asked if I have had low B16 vitamin and I have asked before if the hospital would do a full check up but they refused.
My steristrip came off yesterday so I can see the scar is just 1 cut with afew little ones off at the end at the bottom. I didn't realise the little ones were there until week before last. Not sure if they are to do with the skin at the bottom being used to keep boob lifted as it can drop again after 5 years. Also got letter yesterday saying only benign changes were found in path results so maybe treatment has caused changes.
Back to work last Wednesday so back to normal now.
Have booked 2 weeks holiday in September so we are now looking for a villa in Spain for a 10 day trip.Hoping to go away for afew weekends before then though.
We are hoping to meet up in September or October from May chemo thread 18 but not heard any more since that was mentioned.x
Hi Kip ... yes ..I’ve hooped now and then but no where near 10 mins. I tend to do a little and my aim is often. I’ve found the yoga dvds and book so I have no excuse not to do some ... well I don’t have a yoga mat !! 10lbs weight loss is good. I might have lost a pound recently but I did make scones and rock buns over the weekend 😈..... probably put it on.
weather pleasant here but expecting rain
hope everyone is having a good day
How are we all today? Another lovely sunny day here but quite warm and not helping the hot flushes at all!
Linda - was interested to see you have low neuts too.. when I had my last blood tests for the Add Aspirin trial mine were low too, and the Onc Nurse said its the chemo and that sometimes for some people they never do get back up to where they once were! She said she could see from the other bloods that my bone marrow is working though so they aren't worried and actually I have had the least amount of colds and bugs in my household compared to the hubby and kids!
Hope the trigger finger is ok, sounds painful!
Feenix - how you doing? Still hooping? I got mine out this morning, did 10 minutes.. still battling with the diet.. now lost 10lbs but still a way to go and getting very bored of it.. the biscuit tin is shouting to me all day long!
Was thinking it must be Red Rose's wedding this weekend? I have chatted to her on messenger so will see how its going.
Hope everyone else is doing well and getting over the cancerversary dates.
Jane .. what lovely words and you certainly say how it was/is. Pleased to hear your zest for life is back. Never say never ...
Linda ... pleased all is well and looks good. Hope your trigger thumb doesn’t get worse but good you’re going to be seeing a hand specialist. Hope the red meat and greens help your bloods. It is weird when you get to the top of the mountain as a Jane so aptly puts it.
Lovely warm day today, walked a bit but I’ve still not got the yoga video out.... my mantra is I must do better ... maybe I should start writing lines to remind myself to get motivated 🤔😂
The big reveal went well. I had a stitch removed and a steri strip put on scar. There are more scars but small ones at and near the bottom in a kind of fan as skin has been used to help keep the lift I think. There is some bruising still which I thought was more gunk as its quite dark. It looks good though.
There is no need to check the boob that had rads and then can do it every 2 or 3 weeks as I am doing it weekly at the mo which is abit too often.
I am moisturising 3 times a day for 4 weeks then can use bio oil.
He said get in touch if he can help again. I will get another card as he has been fantastic!
So this feels like the end of a long trek up the mountain as I won't see anyone until next May.
Although my neuts and white blood cells are still low so I need a blood test in 2 months to check they are back to normal again which they should be. I should eat red meat once a week and lots of green veg.
Also I have thumb trigger so need to see a hand specialist in case it gets worse.
Oh Jane what beautiful words, made me shed a tear, that's exactly what we are!!
Hope you get out and celebrate the cancerversary in style...its a funny old time, I've just passed mine and found it quite a tricky time but I'm still scaling the mountain and hopefully pulling up those behind!
Tomorrow is my Cancerversary. As I reflect on my year, I feel it has been quite an experience! I have lost a breast ( to be reconstructed later this year), but my hair, which only thinned due to the cold cap, is growing back at a rate of knots, and my energy and vigour for life has returned. I have felt humbled by the love shown to me from family and friends, and acquaintances.
But ladies, I have to say, you all on this forum have been amazing! I was thinking that I really don't know how I could have got through it without you. I was thinking of an analogy, and felt it's a bit like we all have a mountain to climb. At times it can feel insurmountable. But, as we get over the obstacles on the way, we look forward to the summit. But, and this is what makes me so thankful, when we can see that final summit on the horizon, we don't just run for it, (frizzy) hair blowing in the breeze! No, we look back over our shoulder, finding other ladies who are struggling to climb up, and we shout encouraging words, and put out our hands to grab theirs and help them up the mountain. What amazing women we are!!! I know I will probably never meet any of you, but we are united because of what we have been through, and I want to thank you all from the bottom of my heart, for helping my journey to be less scary.
Love Jane xxxx
Hi Reddi, so lovely to hear from you. Sounds like you have a huge amount going on at the moment and that things are slowly getting there for your Mum, hope she is soon settled with the right care in place. You are coping amazingly with all the travel and worries and fitting in the treatment for you too. I am suffering with the aches and pains still, although I am on Tamoxifen but seems they all cause various SEs. I wake up and feel 100, my feet, ankles, knees, elbows, hips, shoulders and neck are so stiff, as I get moving they loosen up some but if I sit still for a length of time.. oh boy they are trouble. I take the Glucosamine and Chroidtin (sorry can't spell it) and also take Magnesium and Zinc as recommended by my Oncology nurse. I take Epsom salt baths too sometimes. I also have some Emu oil with glucosamine in which you rub into the muscles which is helpful sometimes. Its strange because it definitely comes and go in terms of severity. I have taken up swimming and although it doesn't hurt to swim, my shoulders really suffer afterwards so not sure of how much good its doing, but my thought process is "I ache if I do and ache if I don't" so must be better to keep moving. Ibrufen is supposed to help too but I can't take that as I'm on an Add Aspirin trial. Just another joy of these wonderful treatments I guess.
Thanks for the reminder about chondroiton and glucosamine. I do have a stash, but didn't remember to pack it. I'll get it back in the queue of tablets once I'm back home. (I've been packing very, very light, especially as I always return with mementos and the like that have been stowed in various attics except my own for the past 30 years.)
Hi Reddi ... lovely to hear from you. Gosh you must be exhausted...you’ve been so busy but good you’re getting things sorted for your mum. ... and a good distraction as you say. Sounds quite involved arranging and rearranging things over there regarding care. What an interesting experience at JFK airport though ... something different !!! Everything crossed for your USS when you get back. Sorry to hear your joints are acting up big time. Some women take chondroiton and glucosamine which you can buy over the counter. Im on letrozole. My joints were cranky before but they, and muscles, do get worse at times but not as bad as you sound ... but I’d already gone through menopause so perhaps not as acute affect going on AI. Hope you get some relief soon and they settle. It is said the affect of AI does getter better with time.
Ha! I was thinking yesterday that I should post a little update. I have been reading -- so I'm glad to hear that Linda's bruising seems to be receding; that Feenix is off to my homeland with a wardrobe to envy; that Kip (and someone else, too?) has been named a community champion; and that so many have had clear anniversary mammograms. Here's to more clear mammos!
I've been jetting back and forth to the US since my first trip over on 19 March; now on trip #3, returning to London on 5 June and planning to be there for a good stretch this time. (I managed to squeeze my first post-chemo haircut into the 7 days between trip #2 and trip #3 -- it took hardly any time because I've decided to stick with a short pixie for now.)
I can't remember what I've shared already, so in "brief" (not that brief): After a month and a half of struggling to figure out a care plan, my mom decided that the best option was for her to move to a nursing home. Because of her disease, only 3 nursing facilities in the state of Virginia were an option; only 2 of them returned our calls, and we picked the better one, about 200 miles away from where my parents live. She lasted there 1 week. They couldn't get the bed or ventilator to work for her, so much so that it was actually riskier for her to be in the nursing facility than at home, and it was definitely far less comfortable, much worse than we'd anticipated. Last week, we finally got the county social services to approve home-based care, and in my last week here I'm scrambling to pull together the application for financial assistance and the switch to a new carer agency that takes state aid since my parents are burning through their savings. Unfortunately, a week at the nursing facility cost $6500, and the trip to and from cost $5400 -- that didn't help, but we would have had to apply for state aid even sooner if she'd remained at the NF. I think the harder bit is switching agencies -- I've been "covering" the 3pm-4am carer shifts, and not getting much sleep as a result.
I guess the bright side of all this is that I didn't give a second thought to my own diagnosis anniversary earlier this month while caring for my mom. I have had to rearrange a couple Herceptin injections, and missed the last 2 of 4 Moving Forward sessions, and other logistics of ongoing treatment have been a bit of a headache. But I also got the amazing experience of setting off the radiation sensors at JFK airport when I traveled the day after getting my three-monthly MUGA heart scan. (What a scene that was, proving I'm not a dirty bomb. Still, it was pretty cool when they brought over the special scanner and could detect exactly what medical tracer I had in my body.)
My first mammo (left / WLE+RT side) won't be til October, and I'm just going to assume the all-clear streak will continue. I have to have an US the Monday after I get back to check out an area of possible fibrosis in my right / reconstruction breast. The surgeon seemed only mildly concerned, so I'm taking it in stride.
There is one side effect that is bothering me: terrible joint pain, presumably from lack of estrogen (I'm on Zoladex + the AI exemestane). I really, really notice it when pulling my mom up in bed (using a draw sheet) or helping her to reposition, but I also wake in the night with pain in my feet, ankles, wrists, and hands; I'm also having a hard time with my knees, especially rising from a squat. I'm taking ibuprofen, but it's not enough. I understand joint pain somewhat maxes out after 3 months on AIs, so I'm hoping it won't get worse, but I'll be chatting with my onco when I see her next, on 12 June.
Has anyone stumbled on ways to help with joint pain?
Feenix - sloping off to the shops sounds perfect...hubby might not notice you are missing for a while! I would love a personal shopper to help me build up a capsule wardrobe so that it all blends together.. but don't think that will happen!
Kip ... love the thought of the waiters in Costa being ‘educated’. It’s good to meet up with others and you’ll certainly be more insightful now about other c’s ... all the same worry though.
Clothes wise for events .... I’ve got two Indian tops I bought for wedding in Kolkata so using one for day time ceremonies and one for night....I don’t do frocks. Weddings in India are so relaxed..not sure about US. Anyway we will be relaxed !! Lot of palarva though for sitting around for most of the day ... hope I don’t nod off. I’ve been wondering if I might be fatigued in the afternoon but then recover enough to get round to the shops !!! OH would be ok catching up with old friends .... it’s an idea 🤔😈
Washington sounds great, although the packing for all the events is tricky.. definitely fusion.. or the capsule wardrobe (something I've always wanted to achieve but never have - mines more bomb exploding kind of wardrobe). I like the crocheting..its coming along nicely. Last night I met up with the ladies I went on the Hope course with, was good to see them again and we all got talking C and operations etc.. they aren't all breast cancer so quite interesting to hear what goes on for other parts of the body. I ended up popping out my Knitted Knocker to show them as they were all so interested! Poor waiters in Costa though!! Seems to be a theme with waiters and boobs!
Linda - very exciting for the big reveal.. can't wait to hear how it went... and glad its all healed nicely and you feel well.
I wonder how Reddi is too, perhaps we'll hear from her in a while.
Kip ..... one good thing about bra is it sits nicely again chest wall and can’t see the ‘gap’ when bending over 😳
I haven’t done much crocheting as you can see....
Off to Washington .. invited to wedding .. son of OH’s old friend. Touristy things more interesting 😂 I’m hoping to keep packing to a minimum. Have two long ceremonies during the day then night time black tie ‘do’ .... I’m thinking outside the box re clothes to keep to a minimum .... fusion comes to mind.🤔
Linda ... so pleased the bruising has improved. You’ll be pleased to see the results tomorrow. Sorry to hear about OH’s car. Mine cost a bit to get through last MOT although it is over 16years old !!! We’ve been looking at cars since last year, test driving was a great distractor. We only decided recently about which car to get and have been looking at getting a good price... however we have now decided to look at electric so need to research and test drive... again. EV’s need to come down in price although I’d only be looking at secondhand.
Hope you’re all having a good day.
Hows Reddy doing?
The bruising is alot better thanks. I am seeing surgeon tomorrow for the big reveal. I am sure it will be fine.
I feel ok too so hoping to go back to work soon.
Weather is crap here. We were thinking of going away but OH had to get a new car as his failed MOT.
Love Linda x
Hi Feenix, I know what you mean about the Amoena bra, mine is quite a sturdy beast and very Madonna like, so only wear it when I need a heavy duty look 😉. I prefer the Asda ones too and still prefer the KKs. You must post a pic of your crochet one, I can't even begin to knit, sew or crochet. Where are you going on holiday? I hate packing as a I always want to take everything.
Hope everyone is doing OK?
Hi ladies...hope all is well.
Hope you’re doing ok Linda and bruising is improving.
Ive been wearing the Amoena bra I got recently. Definitely not as comfy as my Boudicca bra and my foob doesn’t really fit well. The cup shape doesn’t suit now I’ve had it on for a couple of days but it’s ok for day to day around the doors. I found an amoena softie which suits the bra...I now remember I didn’t use it often as the shape wasn’t really me... too ‘full’ ... more Boudicca than my Boudicca bra.... maybe more Madonna..ish 😂 My Boudicca bra is from woman zone, as is the foob so they go together. The Asda bras are still in use and very suited to using a KK. I just wish they did them without lace...more smooth. Im still on the lookout. As my knitting prowess wasn’t up to scratch I’ve sent off for a spare KK. I’m on trying crocheting one but it may be a while before it’s finished !!!! Starting to get sorted as away for a week next month. I’m so used to travelling with hand luggage that I’m finding it a pain having to take checked in luggage 😳
Thanks Kip. I can't remember it being bruised before but my OH said it was. Am using a heated beanbag which helps the pain. Congrats on being a Community Champion.x
Hi Linda, good to hear its all done and dusted, just the bruising to get through, hope its not too uncomfortable.
Jane - goods new!!!
Just wanted to share the news that, having not received my results letter after my mammogram, I phoned my breast care nurse today, and I have got the all-clear! Yayyyy! I felt euphoric and then a little tearful. The relief!!!! I still want the letter of course, but I have the message on my mobile phone and it is so wonderful to listen to it.
On 1st June it will be one year since I got the news that it definitely was breast cancer. What a year this has been, but onwards and upwards now!!
Love Jane xxx
Thanks Michelle, you've just made me chuckle into my cornflakes.. Your post says "my hairy is much longer now",... I was laughing wondering just what was hairy??? 🤣🤣🤣
Yes I remember you saying you had a big party. I’ve decided to have a party too but much smaller scale than yours. Mine is at the end of June , something else to draw a line under all of this. How is life at 2 years clear? Do you think about it much?
The photo was taken in Feb, my hairy is a bit longer now, although still not long enough for me! X
Whoo Hoo - last herceptin and doesn't that feel good?! Mine was last June and I can still remember the day vividly! I had a massive party a month later with over 100 friends and family - a way to celebrate and thank everyone for their support.
Lovely to be able to get out in the garden - well done you!
By the way - love your photo - is that your hair now? x
Hi Jay, lovely to hear from you and great news about your 2 year scan. I’ve just had my last herceptin so hopefully life will get more and more ‘normal.’
Kip I cant remember if I have officially congratulated you on your community championship! Great news and well deserved. You’ve made me smile so much over the last 12+ months. And your star looks lovely!
Ive had a lovely day in the garden working on the veg plot. I didn’t do much to it last year so this year we’ve made a big effort and though I say so myself it is looking fab!!
I hope everyone is enjoying the sunny weather! X
Hi Feenix, yes got my star... Exciting. Funny you said about doing your exercises, I dug out the breast exercise dvd yesterday as suffering with achy shoulder neck upper arm area too and haven't been doing the exercises as much lately. I think swimming may have set mine off as, as you said, both sides ached but my "good" side got better quicker.. Seems any injuries or twinges hang around.a lot longer these days. Its lovely and sunny here so off with the dog for a stroll this afternoon.. If I can get him off my lap that is..
Kip and Gill .... see you have your stars.... both well deserved.
Gill .... long time no speak.... how are you doing? You’ll have had your yearly checkup? How’s OH? I’m doing ok. Hard to believe sometimes it’s over a year since everything kicked off and came on here and met you all. The April surgery thread isn’t active anymore but I do believe we are all doing ‘ok’ from there. Linda Corinne is in contact with Jem so have sent an hello through her and I’ve made contact with Sally on another site. Had a lovely meet up in Birmingham recently with Kip et al.
Keep in touch.
Jay ...great news getting mammogram results
Lovely and sunny ...need a good walk today plus got a list of jobs to do. I’ve actually done my bc exercises first thing....have been finding my left scapula area/shoulder/neck/upper arm is a bit sore/aches especially when I wake up but sure it’s muscular as that area was sore when stretching doing yoga some weeks ago...think that set it off + been very lazy about doing exercises. And my posture is rubbish. Good side was sore too but that settled quicker. I must be better at exercising. Swimming would be good but still not got any gear !!!
Have a good day
Michelle21 - glad to hear your mammogram was clear.
I had my 2 year mammogram on 8th April and after lots of chasing both for verbal result and then for the confirmation letter - I received two identical copies if yesterday's post - again a two line letter saying all is clear - hooray - it may only be two lines but what a relief to read! One copy of the scrap book and another to be framed I reackon!
Mind you I like your idea of party poppers even more! x
i to have been asked to become a community champion . Feel quite honoured and nice feeling to know maybe we have helped over the last 12 month. Just waiting on the ⭐️ .
feenix my lovely long time no speak. How are you? Lovely to see your name.
Speak soon hopefully and take care. And congrats Kip.
aww Kip, you are going to be a Community Champ - that is so deserved, I've seen your supportive posts, and you're really good at finding the right words, and the right way to express them. Yay! x