Breast Cancer Now Forum

Hi all,   Apologies for not replying earlier -- I was in the US visiting my parents in January and juggling caring responsibilities for them with my work. They are doing pretty well -- not great, but better than in the spring of 2019, which is better than any of us expected. Then once I got back to the UK, I had to jump through some Home Office loops in order to start a new part-time job, which I hope will help us build up some income stability and some savings, especially since we ate up all our savings paying the bills during that long treatment year (plus some). So it's been a bit busy.   Glad to hear everyone is doing well. It sounds as though most of you have your mammograms coming up. Thinking of you as always, and hoping for the best results!   All best, r. ... View more

Hi everyone! I'm not sure how many of us are still on the forums, but I wanted to wish you all a very happy new year.    I think of you often and feel so grateful for having had your support.    xoxo, r. ... View more

Hi all! Our thread has become mighty quiet -- and so, too, the May 2018 surgery thread where many of you started last year. I think Feenix said in the surgery thread that it seems we're all focusing elsewhere, which is good!   Still, I thought I'd share a little update on me. I've been home in London now since early June; no more transatlantic travel to care for my parents, at least for now, as none of us can afford the expense; plus, I want to be here, with my OH. I'm behind in finalizing their (very complicated) paperwork for benefits, but should get that wrapped next week. Mostly, I've been busy getting back to a full portfolio of freelance work, hoping to get enough clients underway to be able to build up another just-in-case cushion of cash and, fingers crossed, get a nice walking holiday this autumn before it turns too cold.    I'm definitely still experiencing joint pain from the endocrine therapy. I'm focusing on diet and exercise right now, looking to cut inflammatory foods and increase weight-bearing exercise, and, per the oncologist's advice, taking paracetamol as needed.I'd like to lose about 10 to 15 pounds, so that my clothing fits like it did before chemo, too. It's slow-going.    I hope everyone is well and settling into the new. Thank you all for being such great support through everything. xoxo ... View more

Now that I'm off my phone and on my computer, I can say that my so, so beautiful doesn't do you justice. I especially love the flowers in your hair and your rose-bud cheeks. Stunning. And the Mister is quite a dish, too. ... View more

Oh, so, so beautiful. ... View more

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.)  ... View more

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? ... View more

@RedRose I think you must be about 8 weeks from the big day... !!! Hope things are coming together easily and beautifully. ... View more

Hi @DiKat - me again from June chemo / December surgery. I got 5 booster rads for my WLE side and I am 47.   There is a chance that I got prescribed 15+5 partly because my WLE side (ER+/HER2-) did not respond to chemotherapy, but I thought booster rads were suggested for under-50s with WLE. (I had a mastectomy and no rads on the HER2+ side because of the extent of DCIS.) ... View more

Hi @DiKat - me again from June chemo / December surgery. I got 5 booster rads for my WLE side and I am 47. There is a chance that I got prescribed 15+5 partly because my WLE did not respond to chemotherapy ... View more

Posted while trying to add: Hope everyone is doing well. ... View more

@Kip That sounds like so much fun! Laugh the whole way. (That's what I would do.)   Hello from America! Tired, and it's only 7:30am, day 1. ... View more

@Kip - Has the pain gone? It sounded as though it was just on one side of your body, yes? If so, do keep an eye on it for appearance of little bumps / scaly rash, which would be sign of shingles. I got it during chemo; it can be provoked by stress as well as overworked immune systems.    I spoke briefly to a woman who staffs the Macmillan centre at my hospital yesterday. She's 10 years post treatment and mentioned that it took some time after she finished treatment for her body to rebound from colds etc. as quickly as it had in the past. Hearing reports from @Feenix, @Kip, etc., it does sound as though that is the case for us, too.   I've officially got the okay to move next Herceptin to 11 April and, after spending some serious cash with the airline, I'm off to the States for 3 weeks on Tuesday. Please no meeting up til after Easter!  ... View more

Thank you for asking after my mom. She's being discharged home today, but unfortunately, things aren't looking very bright. She's developed diarrhea -- apparently this is common when patients are put on feeding tubes, which the hospital required since she's on a vent and they felt her tongue muscle wasn't strong enough, and she'll have diarrhea for about 3 days after the tube is removed. But because she has the compression fracture in her spine, she is having a lot of trouble transferring to a bed pan, and needs 2 people to help her. I'm trying to line up 24-hour care through Monday, by which time the diarrhea will hopefully be gone, but it seems we can't get skilled nursing for this, which means no assistance for suctioning mucus from my mom's lungs -- something she's typically done herself, but right now she's very weak, so probably needs help, especially overnight. My sister is overwhelmed, physically and emotionally, and my phone calls to different agencies can only do so much -- and that is very, very little. After getting my oncologist's okay to move out my next Herceptin by 2 weeks (the max allowed), I'm trying to change my ticket to fly out asap, but I've been on hold for ages because of that Boeing aircraft being grounded. If they'll change it, then I've also got to rearrange next MUGA and some client meetings. What a clusterf***. ... View more

@Kip Word from oncologist: Sorry, joint aches and pains are normal / expected SEs. If it helps, take paracetamol.   @Feenix Between your and Kip's hula'ing, and your yoga, and Michelle's marathons, you're putting me all to shame. I was not pleased with my weigh-in today (no gain, but no loss either), so I need to get into an exercise routine. The weather's been so miserable of late, it's hard to muster the motivation to get out. At least when I had daily RT, I got 2.5 to 4 miles of brisk walking every weekday, plus longer walks on the weekend.  ... View more

@RedRose I've got no good ideas on first song -- mostly thought of it because my OH and I married at the borough hall and regret answering the question, "Do you have any particular song you want played?", with an indifferent no, and then discovering that the default song played at the end of the mini ceremony was "My Heart Will Go On" from Titanic -- a song we both hate. At the time, we said we should have chosen Bryan Adams' "Heaven", but I think Jim Croce's "Time in a Bottle" is a beautiful choice. (I don't know " A Million Dreams" -- the link you shared is now dead, and my little online searching hasn't worked -- so can't weight in on that one, but I suspect it is just as lovely.)   @Linda I've always found smear tests to be very uncomfortable to painful. I bet that having endocrine therapy  / going through menopause would make the cervix friable. Thankfully, I had one right before starting chemo last year, so I'm not due for another 2 years. I'm also going to try some vaginal moisturizers to see if that might help with dryness.   I'm trying to decide if I'm going to re-colour my hair once I hit the 6-month post-chemo mark, or try to live with my new greyness. I think the grey is fine now, while my hair is super short, but I miss having longer hair. Guess it will be months before I get to something like a decision point in terms of length -- my hair growth seems to have really slowed down.   @GeorgieGee Another wedding! Can't wait to see your dress and, eventually, your daughter's. Have you had results of your tests yet? I hope the clot is breaking down -- are you on anticoagulants for it? ... View more

Hi, all. My mom may be discharged home today -- waiting to hear. It will probably be a relatively short-term stay, however, as she and we think that we're approaching the time when she'll need to move into a skilled nursing facility, since her muscles have atrophied enough to put her bones at high risk, and the carers do not have the nursing skills to reduce fractures, etc., going forward. I have to do some research this week into Virginia programs to see if any might allow her to get skilled nursing assistance at home rather than in a facility. (That's the simple version; US healthcare law is super tricky.)    My skin seems to be holding up well still -- now on day 5 after last RT. I know I'm not yet at peak SEs yet, however. Seeing the oncologist tomorrow -- can't wait to talk about all my aches and pains.   @Kip, I'm on exemestane (AI) alongside Zoladex (puts me in menopause), and my joints hurt like hell.  👿 I'm not sure if it's the AI or the bisphosphonates or the combo. Ankles and wrists are the worst, but knees and elbows hurt, too. I've got some shoulder pain on the lefthand / RT side, and though I'm doing my exercises once or twice a day, it seems to be getting worse, not better.    @Michelle21 & @Kip I've also found my silk pillowcase (from chemo days) to be super helpful -- so long as I keep it to the side of the bed and only pull it into action when I wake with a hot flush. By the time the flush passes, my body has warmed the pillow up, so it doesn't feel too cool when I get chilled. The Chillow sounds like a perfect option for the summer.   @Feenix Glad to hear that you are recovering from the jetlag.  🛌 I'm assuming you want/need a fairly structured bra with pockets. I'll keep a lookout for options when I do my inevitable new-bra shopping. Smart idea to try adding a dressmaker's weight to the knitted knocker. Sadly, I've discovered that I dropped a stitch early on in the one I made before I was cleared for immediate reconstruction. Not sure I can mend it well enough to donate it. Plus, I chose a lovely deep blue yarn; not sure the UK KK group take unusual colours.    @cdc Like Feenix, hoping your wound has closed up -- or is getting closer to it.   Good luck with the anniversaries coming in the next few weeks. I found my one lump 3 April (though I always remember it as 4 April -- the day the GP confirmed and referred me to the clinic); diagnosed 2 May. What a year.  ... View more

Sounds as though each trust sets its own policies on first mammogram after treatment, and it probably depends somewhat on the case. When my surgeon and I discussed date for my mammogram, surgery date didn't seem to be a factor. I had my surgery in December, so October is 10 months after surgery. I'll be having the mammogram on the WLE/RT side only (not on the mastectomy/reconstruction side, of course); it might make a difference that I had bilateral BC in terms of monitoring.    Also, my mom seems to be improving -- they are talking about discharging her home on Tuesday or Wednesday. However, she's been moved to intensive care to open up her critical care bed for another patient, and they have put her on a feeding tube (through the nose, ugh), so I had a quick skype with her on Friday afternoon before that happened. Apparently, there's some new law -- not sure if it is state or US federal law -- requiring ventilator patients in hospital to be put on a feeding tube after 2 nights. The hospital staff tried to get a waiver for her, but it didn't come through. They also had to place a catheter in her heart because all her veins were collapsing when they tried to place a cannula -- and I thought I had it bad when they struggled to get my cannula in for the bisphosphonates in Feb. She's going to be *super delighted* to get home. ... View more

My 1-year anniversary mammogram should be mid-April, but as this was going to be 4 weeks after finishing RT and I have Herceptin through September, my surgeon and I decided to push my first post-treatment mammogram out by 6 months, to October.  ... View more

Finally have an update --  and it is good: my mom seems to be stabilizing. Body temperature and blood pressure are up in response to meds, and blood cultures aren't growing anything yet, so it looks like she doesn't have sepsis. Hurrah! She has a fractured rib and a compressed vertebra (lumbar region, don't know which one), one or both of which may have been the result of too-energetic assistance on the part of a carer, as well as pneumonia, and possibly also the flu. The rib will have to heal on its own; they may be able to do some fairly simple repair work on the vertebra. And right now, they're aiming to discharge her home -- though when is still to be settled, and depends on what sort of care plan can be put together with the social worker. I haven't been able to speak with her yet, as the hospital ventilator has exacrebated a sore throat, so she's mostly communicating by writing notes or mouthing things; we're going to try to skype tomorrow, with me doing all the talking. However, I did get a photo by email today, and she looks reasonably well given everything. I could make out her BP on the monitor (perfect) and the fact that the first thing she asked of my dad and sister was how their cat is doing. 🐈 Which is a good sign -- and a great relief.  😺   So OH and I did go out for dinner tonight, and I did a little bell-ringing in my head. ... View more