Oh you poor thing. I'm in a similar situation (age 45) Had to stop tamoxifen after 4 yrs because it was causing uterine haemorrhages which took weeks to recover from. So, had ovaries removed oct (kept uterus as advised to have least invasive surgery possible) and went on to Letrozole in Dec. Already had significant menopausal symptoms before this latest round of surgery and drugs, and these didn't get any worse once the ovaries were removed. Once I started the letrozole though, it was a different story! I have suffered with hot flushes since chemo, but now seem to have them all day and all night. I am so tired just because of interrupted sleep, always feeling dehydrated because I can't keep up with the fluids I'm losing from sweating, and the aching joints are awful. I don't have many options left now though, all my docs are very clear that I must stay on hormone therapy as long as possible- my cancer was highly hormone driven and had spread to lymph nodes. My BCN has been v kind and just reminded me how bad tamoxifen was when I started with it, and it definitely got easier to tolerate after the first year. She also said there are two further alternatives to try - so if you aren't coping with Letrozole there are other options. She suggested I give it at least three months before trying something else or having a break. Lastly, she reminded me that a lot of the menopausal symptoms will be coming from the surgery and not the drugs at all. I am really struggling with it all - had some real ups and downs since diagnosis five years ago, but just like you am questioning my ability to even carry on working at all, sadly cannot afford to stop or even cut my hours by much. I have had so much time off sick lately (had flu and now chest infection) and also struggle with Lymphoedema. Don't think there are any easy answers, but just wanted to say stay as strong as you can. You most definitely are not alone! Xx
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Hi there seabreeze, Same has happened to me. My periods stopped after first chemo at age 41 in late 2012. I had Herceptin (6months) and have been on Tamoxifen since May 2013. I have had two uterine haemmorrages eleven months apart, and have been through the gynae-oncology clinic twice now. Because of the increased uterine cancer risk, they like to do a hysteroscopy every time, but on both occasions they found nothing to worry about on that score. They did find a couple of polyps, which they removed the first time, and the second time they discovered fibroids, which I didn't have first time. Ultrasound continues to show thickened endometrium. I had a post-op infection following first hysteroscopy, which knocked me back for a month; second time I was fine within a couple of days, so probably just bad luck the first time. I have really struggled with recovering from the haemorrhages, it has taken a few months to get my energy back each time, which is a real problem when you have a full-time job and a family to look after. I imagine the impact of regular heavy periods is pretty similar - exhausting on top of everything else you have been through? My GP has been really supportive, and when I went to her saying "Can I just have a hysterectomy?" she agreed it was a sensible solution, given that tamoxifen is extremely good, and should be taken for 10years. She referred me back to gynae clinic, and I met a really nice surgeon who suggested just removing the ovaries - that would shut everything down, without the greater risks of more invasive surgery. I'm waiting to find out if he's been given the go-ahead. Apparently this is unusual and may not be funded. Everyone I've come across, nurses and doctors, seem pretty clear that the endometrial thickening is tamoxifen-related. If it's having a significant impact on your life, they should do something to help you - it's important to stay on it. My BC onc has actually been pretty rubbish, and gynae much more understanding. I tried talking to my BC onc after the first haemorrhage, and he basically said it wasn't his concern, made no suggestions as to what to do or where to go next, and refused to understand what an impact it was having, just reminded me that tamoxifen is very effective. It's all very frustrating and wearing, and time consuming. Just when you think you've really improved, something else comes along to get you. Don't be fobbed off though - make sure they understand how it is affecting you. Good luck, hope it all goes OK, Fiona
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Thank you Sam and Janet. Will read the Macmillan info. Sam I'm relieved to hear things have improved for you, gives me hope the same will be true for me. Just wasn't too sure what to say to OH and frightened they'd say it's my own fault for doing too much. My elderly mother tells me this at least once a week, and while I perfectly happy to argue the toss with her, I think I might have been starting to believe it! I'll be prepared now for when I get the appointment, thank you.
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I have recovered pretty well from mastectomy, chemo and Herceptin, and am on Tamoxifen. I'm 43, and suffering horrible menopausal symptoms. I am coping with it all though, and doing really well in a new job. I ran 10k race for life a couple of weeks ago, which is something I never thought I could do! My one remaining problem is that I seem to catch every bug going. I don't seem to have any immunity to anything, and viruses seem to rumble around my body causing sinusitis, chest infections and colds that last for weeks on end. I have also recently been diagnosed with asthma. I've been referred back to OH because I have overstepped permissible short term sick days, and my employer wants them to say whether or not I am covered under the disability discrimination act as none of my illnesses are directly cancer related. Just wondering if anyone else has experienced this. Not sure what I should be saying to OH. Don't want them writing a report that says I can't cope....I can't afford to work part time!
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Well, MRI has come back normal. Such a relief ! Headache is worse though, so now off Tamoxifen for a couple of weeks hoping that helps. Supposed to be back at work in a week's time, but not unless head improves. Generally fed up. Was OK going through chemo thinking there was an end to it, and with the idea of recovery. Having to live with debilitating side effects is something else entirely. How are others doing on a break from T?
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And Anne, thanks for good wishes. Know what you mean about counselling. I had some back to work support, six sessions, but actually feel like I could really do with some now. Spending four weeks wondering why I've got a headache has been pretty frightening, and harder to explain to folks around me as I look well, and everyone's always telling me how well I look!
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Hello all. Just reporting back on scan results....I have a brain, and more importantly, it's normal. What a huge relief that was. Still got headache, but have now stopped tamoxifen for a couple of weeks, so hoping that will provide the answer... Cat zoo, sounds like you've really been through it. My mum has been tricky to deal with through all of this, because of her memory probs, which has meant many accusations of not telling her stuff, and a lot of taking her frustrations out on everyone around her. So sorry you've had it so hard. Nonni, don't be in a hurry to return to work....my experience is it's not all it's cracked up to be! Good that you're liking your curly hair, mine has gone curly too now that it's grown a bit. I can't cope with the fuzzy head look, so am now keeping it cropped. After years of blow drying, straightening and keeping my shiny brown bob as tidy as poss, the new grey crop is soo liberating! Hope all are doing well and looking forward to a sunny Bank Holiday weekend.
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Jayne, yes it could, that's what I'm hoping. My onc agrees it's worth trying a different one, and also splitting the dose. Sadly, my GP thinks it's rubbish, and I need him to write me a new prescription. I'm gonna try seeing a diff GP at my surgery and see if I can persuade them. If it makes no difference, GP wants me to stop taking it for a couple of weeks just to see if it provides any relief. sounds like you really deserve the holiday, hope you enjoy it.
Scan now done, they said I should get results "in a few days" so I'm hoping by end of this week!
On the weight loss theme, I've managed to lose nearly a stone since treatment finished (I put quite a bit on as usually very active and not used to doing all that sitting around). I used My Fitness Pal, which you can use online, or download an app onto phone or tablet. It's a bit tedious to start with, but once you've got all your recipes entered, and your favourite foods come up for quicker selection, it's really useful. You can log your exercise calories, so it's dead easy to buy yourself cake/pudding/wine with some exercise calories. It's free and you can just monitor your usual eating and modify to reduce calories which I have found loads easier than doing an actual diet. Makes you see exactly where those extra calories are coming from too.
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think I'm in a similar position to you. Finished chemo early feb, started tamoxifen late feb. have had terrible hot flushes, nausea and sleeplessness. These side effects seem to have increased over time, not decreased as onc said they would. Onc recommended acupuncture, which I have tried, and found very good. I can't afford it long term though, and it only works if I have it regularly.
More recently developed a headache that wouldn't go away. I'd had a wisdom tooth removed, and saw an emergency doc over a weekend thinking my tooth hole had got infected. I was prescribed antibiotics, but told to go back to gp if it hadn't faded within three days. I then saw GP who looked in my eyes and thought he saw evidence of possible swelling so referred me for MRI. I was pretty shocked and scared! That was three weeks ago now. Headache has not gone, sometimes worse, but never goes. It's not a migraine, and taking painkillers does take the edge off it, but doesn't get rid of it. I have also had days of total exhaustion and generally feeling ill. GP has looked in eyes again and now says he thinks they might be normal but isn't sure!
phoned my breast care nurses team to ask for advice and all I got was"ooh that must be awful for you dear"... Great help that was!
MRI is tomorrow, but like you I think it's all down to the tamoxifen. I was back at work and doing well, back to physical fitness, feeling like my life was getting back to some kind of normal, but the tamoxifen SEs were just getting worse.
This last three weeks has been an emotional roller coaster to say the least, but right now I'm thinking if it is the Tamoxifen, I don't know how I can carry on taking it. I certainly can't go to work like this! the only hope I've got at the moment is to try another brand, which seems to help a lot of folk. There are a few threads here on that theme, and it's definitely helped some. My GP wants to try coming off for a couple of weeks if scan is clear, but I'm wondering if it might be more sensible to try another brand first. GP doesn't believe the brand will make any difference.
i'd be really interested to hear how you get on, so please keep posting here. Hope your BCN appointment comes up with some useful advice. Know what you mean about losing your mind...keep thinking I'm making it all up and being a nutty hypochondriac, then realise I've still got a b****y headache!
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Phew, good news Ribby! My scan is on Monday, and GP promised to chase results and let me know outcome ASAP. I've tormented myself by reading all sorts of stuff (librarian....reading's what I do) but currently focusing on Tamoxifen being the culprit. I had thought it might be stress at work, like Jayne, there's loads of reorganising going on at work and I'm a Union rep, so have been supporting lots of people through redundancy process. Also involved with my employer in a trade dispute over attempts to cut our sick pay entitlements (Oh the irony). I've been off on leave for two weeks though, and no improvement to headache or fatigue. Just want the headache to go away!
Kirstie what new drug have they put you on? I'm on Tamoxifen, but been told if my SEs don't improve they might put me on something else which will mean I have to have monthly injections to make sure my ovaries are switched off. If I'm right and the Tamoxifen is causing my headache, then this looks like a distinct possibility.
just so fed up with the whole thing, know what you mean Ribby about facing the impact it's had on our lives. I was feeling SO well, back at work, fit, lost some weight, really enjoying life, and now I feel like I've taken a big step backwards. I did call the helpline and spoke to a lovely lady who reassured me, but did advise that this illness has changed us, no matter how recovered we are, and continues to have an impact for many years. I suppose I thought I'd done all my treatment and should now be skipping off into the sunset!
on the numb arm theme, mine is still numb down the back to my elbow, and so is my armpit. Occasionally get really annoying pins and needles and tingles, which BC nurse said can be signs of nerves coming back, but I was warned when I had axillary clearance that the numbness can be permanent (I didn't have radiotherapy). I have done exercises religiously, and now back swimming and going to the gym, and it doesn't really stop me doing anything, so I haven't found that too much of a problem.
thanks for still being there pumpkins, hope everyone is enjoying the sunshine. Xxx
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I've been on wockhart brand for five months now, and have had severe hot flushes, sleeplessness, restless legs, cramping feet etc. My onc has written to my gp asking them to specify a diff brand on next prescription to see if it helps. Onc also suggested acupuncture for night sweats and sleeplessness - apparently patients were given this free in her previous hospital - and it definitely helps. Problem is I can't afford to have it every week, and it def isn't as effective if you don't have it regularly.
bit worried about trying another brand now as everyone here seems to find wockhart best! Nothing ventured .....
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Well hello everyone! I've been following posts, but not saying much cos I've found getting back to normal life pretty draining. Back to full time hours at work now, and felt I was doing pretty well, aside from Tamoxifen sweats. Lost a few pounds, feeling much fitter, enjoying life etc. Had to have a wisdom tooth out a couple of weeks ago, and got a nasty headache on Thursday last week. Thought it was prob an infection in the hole from tooth extraction. Got worse and saw an emergency doc on sat who gave me antibiotics and said to see my gp if no better today. Just been. He's looked in my eyes and says there is swelling around the optic nerve. It's not really obvious, and I don't have any mobility/numbness symptoms, so he's going to see me again on weds. If head and appearance of eys is no better I'm being sent for a head scan to look for brain secondaries. Eek! Apparently chemo doesn't do a lot to prevent secondary occurrence in brain - I didn't know that. Thought recovering from treatment was all there was left to do.
was just about to hit my diagnosis anniversary, and feeling pretty pleased with progress, and I find myself having a two day wait for more potential bad news! Sorry to vent on here, but don't know what else to do. Torn between feeling absolutely devastated, and trying to convince myself everything will be fine. It's certainly not helping the headache... Was supposed to be going to stay with best friend and family on weds and now been told I must not drive. Gutted.
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Morning all! Well, what a beautiful bank holiday weekend! Not often we have cause to say that eh?
Jayne, thanks for the advice re acupuncture and hot flushes, will follow that up this week as am truly fed up of not sleeping properly.
Nonni I still have varying amounts of pain and swelling in mx arm. I had axillary clearance in september as well, so def have nerve damage, but think a lot of the pain and discomfort is nerves trying to regenerate. The numb patch down the back of my arm does occasionally tingle which they tell me is a sign of nerves growing. The swelling is something BCN is not concerned about, and I have had LDex measurements done to check for Lymphoedema and it's not that. Worst swelling is the back of my armpit, that bit that hangs over your bra and I can really feel it. Keep telling myself it'll settle down eventually. BCN tells me it can take a year post chemo for our bodies to regain normal physiology. Hard not to be impatient when feeling so much better!
Went to a fab lingerie shop in Minehead last week to be properly fitted for bras, and discovered I'm wearing the wrong size, and that I am awkward to fit. Great. Tried on about twenty non wired mastectomy bras, and none fitted properly. They all seem to squash my remaining boob into a flat blob round into my armpit, leaving the lovely pert prosthesis sticking out in front. I have an amoena wired mx bra and it works a bit better but is I now discover, the wrong size. Very nice lady in shop found me a couple of non pocketed bras that fit really well, and she's going to put pockets in for me. Phew. Longest session in a cubicle trying on bras ever! Anyone else having probs finding bras?
Sun is still shining in clear blue skies here in Somerset, long may it last! Back to work next week...so counting down my days of freedom.
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Gosh I've missed loads! Had a really busy couple of weeks, then a major crash this weekend... People keep saying I need to pace myself, but actually, just taking a couple of days to recover is Ok. Good to hear that everyone's busier too, although our limitations do start to show themselves too don't they? I've got weak hands too, especially on MX side, where still having nerve pain, but no Lymphoedema. Reassuring to hear that's the same for everyone.
fingernails are a mess...all peeling off and splitting, and nail beds very sore. Don't think much can be done except to keep them as short as poss and slathering on the hand cream. Think the garden will have to stay neglected for this year, breast care nurse warned me to keep the hands scrupulously clean while the nails are such a mess.
I have a return to work date now, two weeks today, following session with occupational health. Had a major tearful wobble that morning while walking the dog, wondering what I was going to say to her, but she was lovely and has really put my mind at rest. Looking forward to work now, and I never thought that would happen!
i'm on a Herceptin trial, six months versus one year's treatment, and delighted to say I got six months. That means I have only two further treatments, and then my PICC line can come out and I can go swimming! Have celebrated already by buying swimsuit and swim prosthesis, can't wait to get back in the water as I was a weekly swimmer until all this happened.
Still having masses of hot flushes, day and night from tamoxifen, but seem to be getting the hang of getting back to sleep when I wake up now, so not so exhausted in the mornings. Onc said they will fade, but no signs yet. Have given up coffee as was advised that would help, but now I'm not so sure it makes any difference at all. My older colleagues at work have recommended cardigans and windows as most useful treatments for menopausal hot and cold flushes!
So great to hear what all are up to, it's lovely to think how much fun is being had now compared to how much misery we were all going through a few weeks and months back! More nights out, holidays, cakes, puppies and days at the coast for all of us #perfectantidotetochemo. Xxx
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Thanks Kay for bone scan info... it's an age thing then, I'm still technically pre menopausal.
Nonny, a trip into central London sounds like a bit of a challenge to me, don't blame you for being less than keen. Yes hair regrowth is very odd. My moustache hasn't wasted any time returning, but eyelashes and eyebrows not making much effort. hope you get your appointment sorted, really is annoying the way they just change stuff.
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Back from Barcelona, and mighty relieved weather is staring to warm up now. Found my hot flushes much less annoying when I only needed to take off one layer while in Spain, so you might be ok too Jayne.
Was a lovely break, but came down with horrid cold while away, and still coughing and spluttering now. I have managed to avoid any illnesses after going into hospital following first chemo, so was a bit gutted to finally succumb on hols! Got lots of funny looks in Spain cos of the very short hair! Only much older women seem to wear their hair short there, and me and the OH are sporting identical grey crew cuts at the mo, and both dressed in jeans (not warm enough for a pretty dress). I think some of the double takes were cos we looked like a gay couple! Still, it's definitely stopped me worrying about what people think, and I'm much happier going out with a bare head. Night out with colleagues tomorrow, so that might take a deep breath or two as none of them have seen it yet.
return to work is looming larger now. Have appointment for Occupational Health next week, and really wobbling about it all now. I was leaving to go to a new (dream) job when I found my lump last year. I had to give up on the new job as I wouldn't have been entitled to sick pay, and my current employer was great and happy for me to stay put. All stuff I'm very grateful for, but the reasons I wanted to leave are all still there, and this bloody illness put paid to my escape route. I should just be grateful I've still got a job I suppose, I know so many who've been made redundant recently.
is anyone else suffering with in growing hairs? This is bizarre, but really painful, my nose hairs all seem to be returning as ingrowers, so the inside of my nose is just full of angry sore spots. Having a cold at the same time has been awful! Don't think there's anything I can do except wait for them all to come back. Seem to have quite few on legs etc, but they aren't sore like my nose! Those SEs just keep on coming don't they?
Ribby I haven't seen my breast care nurse for a while, but she did pop in when I had a post chemo appointment and gave me a big "well done chemo is finished!" hug. Was slightly odd as I hadn't seen her for months, and haven't seen her since. Nobody has mentioned bone scans to me either, hopefully that means our bones are fine?
Back to the spring cleaning now...
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Hello all, been a long time since I last posted, but just enjoyed catching up with everyone. This really is a long haul isn't it? I'm a bit impatient really, for everyone, just want my life back now.
On the hair front, I had first trim! Pretty well covered apart from thinner patches at front like a balding man now, but completely silver. was very dark before, so that's a major change. Had a funeral to go to, and I've just come round to realising I'm not going to wear the wig. Too hot, too itchy, and I find it just makes me completely paranoid, constantly worrying about it being straight. Also realised that wearing a wig isn't compatible with a daily cycle to work, so am gradually getting used to baring the head when it's warm enough rather than keeping my hat on. Was looking a bit like a baby bird, with a few remaining longer pre chemo wisps on top, so OH has buzzed them off. Funeral was defo a test of my mettle, catching up with OH's big family, none of whom have seen me since all this started. Knew it would be a shock especially for the kids. One sister-in-law remarked that it was great I had the confidence to do it. If only she knew!
off to Barcelona on Sunday for a few days warmth and culture. I got my insurance through Pink Insure, and paid just over sixty pounds for two of us. Am covered for anything cancer related, and also for anything that might happen to my PICC line, which was worrying me most. They were really helpful too. Cannot wait to feel some sun on my face, and go out without hat scarf gloves and big coat!
To those getting over surgery, keep at the exercises. Axillary clearance was much harder going I found than the mastectomy, was very tired and didn't bounce back like I had after mastectomy. Can't imagine how much harder it would have been post chemo. I did get a good range of movement back quite quick, but chemo then reversed that. Have been back at the gym for a few weeks now, and the arm is just back to where I was pre chemo.
Been trying really hard to lose some of the weight gained from sitting around for six months, but it's very slow progress. Counting my calories, doing lots of exercise, but not much has gone! Can I blame tamoxifen for that? Along with hot flushes (much improved since I stopped drinking coffee which I love) and restless legs (anyone else got this, three and a half hour drive back from funeral was hell with the restless legs).
Off for another dose of Herceptin this afternoon, not gonna be free of the PICC line and weekly hospital visits for a few months yet. Asked about having it removed, but been persuaded not to, they reminded me how bad my veins were, and it does make the whole thing far less traumatic. Just really want to go swimming! Will defo be going on a hot beach holiday next summer so I can float in the sea.
love and strength to all of you, this place is like an oasis for me. Xxx
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Oh Ribby, no! Don't tell me Tamoxifen makes your hair fall out too! Was feeling fairly proud of myself for coping with the hair loss pretty well...but now it's growing back, and has finally stopped shedding five weeks after last chemo. Yay! But...I've got a receding hair line like a man in early stages of baldness.. My head is very shiny. Was hoping I'd be able to go back to work without wearing the wig, as it seems to be growing fast, and I'm ok with it being very short. The shiny patches look hilarious, which is fine amongst family and friends, but in front of lots of teenagers (not all of whom are lovely) I don't thinkI'm brave enough to go wigless.
What are other abldies dping about return to work. Am Ithe only one who finds the wig such a hassle? Anyone else got a receding hairline?
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Hello All! Time just seems to be whizzing by at the moment, compared to how it dragged when feeling really rough from chemo. Good to hear all are doing OK with Rads. Witchy, I have finished my treatment because I'm not having rads. I had a radical mastectomy, and the margins were clear so they don't think it's necessary.
Well, I'm now 42, and really feeling so much better! My birthday was a week ago today, and I had a truly lovely day. Did a NT house and garden, and ate lunch on a terrace in the sun. It was so warm we took our coats and hats off! A friend I only see once a year had brought her husband and gorgeous boy(6) all the way to Somerset from the NE to spend some time with me, so I felt very special. We had a lovely meal out in the evening, when I had seafood and mango creme brulee. Absolutely yummy. Was pretty tired the next day, wnet back to bed at 2pm and slept until 5. My lovely daughter wrote in my birthday caard that she is very proud of me for getting through it all, and loves my egg head! She's a bit older than Ribby's princess, so always keen to balance the sentimental with humour. I do look like an egg head, hair's growing but very white (I was very dark and dyed before) so not enough to hide the shine yet!
Started Tamoxifen last Monday. Hot flushes I'd already been having since Christmas really, but they've definitely gone up a level now. Ironically, I've slept pretty well through chemo, but now I'm waking about eight timess a night in a state of sweating and overheating, followed by freezing cold. Hoping it will calm down once I'm used to the drug, but I was warned menopausal symptoms are often worse when chemically induced.
Thumbnail and a couple of toenails are starting to come away. Thought I'd got away with it Grrr!
On the plus side, I restarted my suspended gym membership, and went three times last week, going again today. I was a keen cyclist, and always cycled to work, but at the moment it'll take me twice as long to get there! I'm starting gently, and BC nurse said it would help with fluid retention (which is getting better) and energy levels, as well as improve what sleep I do get when not sweating.
Feeling a bit guilty cos so many are talking about returning to work, but I'm not expecting to go back before Easter, and then on a phased return. Will be going to Occ Health so they can design phased return. I'm very lucky with my workplace, they have dealt with five other cases like mine in recent years, and are really keen to make sure we are properly fit before going back.
Keep smiling pumpkins, the journey's not over yet, but it's getting so much easier. It's just lovely to read how much better everyone is feeling. xx
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Good morning all!
So good to read that some are slowly coming out of chemo fug. Had appt with onc ( never met this one before) on Tuesday and my BCN was there too. I was feeling pretty awful but doing a brave face. Onc was keen to get me started on Tamoxifen, but BCN was very kind and said give it another week won't make any difference. They were both very good, and I actually left feeling better about everything.
They do think I've got Tax related fluid retention though, which is why my nerve pain has returned as it's causing pressure in my arm. Both arms are much fatter than usual, eyelids are very swollen and ankles a bit puffy. Nothing can be done, and it can take months for it to fade apparently. Really hope the tamoxifen doesn't cause any further expansion or I really will need a new wardrobe before I go back to work!
it's half term for my daughter, so we decided to visit friends. I thought it was about time I inspected the inside of other folks homes as I'm pretty sick of mine! We drove to Swansea through the most horrid rain on motorway, and got totally lost in Swansea as had never been there before. Daughter got very cross about it all, but we were still friends when we finally arrived. Had lovely evening seeing old friend with new man in new home, then cafe breakfast and walk on seafront before heading to Aberystwyth and my best friend's home. Daughter totally surprised me by being the kindest most helpful girl in the world, map reading the route and being really cheery. Think our little road trip was just what we needed. Best friend has taken girls swimming this morning so I can laze around and get ready for a lunch date with lots of friends.
big fancy dress fiftieth birthday party tomorrow night. Think I might offer to babysit and avoid party - the options seem to be GI Jane or Sigourney Weaver Aliens, and I'm not summoning up much enthusiasm for either! Fancy dress should be glam....and that's def not how I'm feeling!
Hope all pumpkins have seen a few glimpses of sunshine, it really does lift the spirits. Spring is just around the corner...
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