Starting chemo October 14

[riversidedawn]

In case it helps ladies, I had my one year onc review today. He said it takes 24 months for the chemo to clear the system and the ovaries to decide if they are permanently or temporarily shut down. Personally I've not had a period since Nov last year, onc said we have to wait another 18 months, but my age of 48 it is 70% sure that I'm now in menopause.

[nicnac15]

Hi pet unfortunately it's back up to now like a normal period hating every minute of it. Loved not having them do 6 months . Interteresting you have mentioned these dizzy spells I've had these for the last week now feeling like I've had a fair few wines the night before headaches too. I've booked in at the docs for next Monday if I'm still having the period I'm gonna ask if there's anything to be concerned about whilst taking tamoxifen and being her+ receptor

[Peta]

Hi Ladies,

Thanks for all your responses. 🙂

Linzz I'm glad your mammo came back good, that's great news.  

bettypoppit it's good to hear that you did the whole range of bloods too, it's not just me then.  😄

For me it's lack of energy and tiredness, nausea and fuzzy head, joint pains in hips, but the worst one is dizzy, the whole room swirls and swoops and I feel juddery.  I can't drive and I can't even garden anymore, as soon as I bend forward the whole world rushes into my head!   I've had the blood tests, so I've just got a few days to wait for the results now.  If this carries on and it is the Tamoxifen I'll swap over to and AI, I can't realistically live with a dizzy head to this level.  I tried to weed the other day and had to lie flat on the lawn after about 3 mins, the only way I can bend down is very, very slowly, from the knees.  So sod the weeds, I'll just chill out on the sofa and wait for the blood results now. 

NicNac I hope you're feeling a bit better and period free? Have you managed to speak to the docs?  

I'm looking forward to meeting you all in October.  😄

[nicnac15]

Hi I'm positive to but they never mentioned turning mine off had heavy periods all through chemo making me anaemic so I am a little bit worried if they turn heavy now. I have t acid tablets prescribed to me already due to previous problems so I can take if it gets to bad but really didn't want then back

[Linzz]

Hi nicnac - "mammoth" did make me smile

Not that I actually know (I'm ER+ so all that stuff is switched off now for me) but if you're bleeding heavily I'd think your GP could prescribe tranexamic acid to help with the immediate problem and then refer you on if necessary. Fingers crossed it doesn't come to that though xx

[nicnac15]

Mammo blooming phone x

[nicnac15]

Congrats Linzz on the clear mammoth can't wait to get mine out the way.
Question for any of you having periods sorry, mine stopped after finishing chemo Feb. Nothing since then this morning woke up and looks to me like it could be trying to start again !! Great not. They did say they might start again has this happened to any of you yet ? I'm unsure who to ring if I start having problems like last time

[Linzz]

Hi Peta, I'm on tamoxifen too and I have found it OK. I've now had a packet of just about every brand there is, and I haven't found them any different. I know that a lot of people do find a big difference though and if you find one is better than another your GP can prescribe the specific brand to make sure the pharmacy doles that out to you. Same goes for letrozole or anything you might get swapped to. I've been told I can try switching to extramesane if I want - so I'm waiting for the results of my dexa before I make any decisions. Dexa takes 9-12 months waiting list here though. Shocking. I'm glad to hear your GP is taking you seriously and doing all that testing - sounds very thorough.  Hope you get some good news soon - it's odd isn't it, we now find ourselves in the position where a non-bc related diagnosis to explain away symptoms is actually great news even if it means we have something else wrong with us Fingers crossed it turns out to be something easily remedied xx

I got my all-clear after my first annual mammo in the post yesterday. Another bridge crossed.

[bettypoppit]

Hi Posse, 'good' to hear others are still struggling with fatigue and a lack of brain - as i am too! I've just had a full spectrum of bloods - including thyroid as I've been to my gp to moan about my lack of energy. She said that she has known it take up to 2 years 😱😱😱! OMG.  Results were negative, so just need to get on with it and accept it is going to take a while longer yet.

I am on Tamoxifen and the hot flushes have got worse in the last 2 months....in fact I'm dripping right now .....yack 😞.  I do also wonder if the Tamoxifen is partially to blame for my lack of energy.  Other than the tiredness, however, I consider that I am very lucky to have just a few minor niggles - stiff, achy and painful hands, appalling concentration and memory, brittle nails (lost them off my big toes 😕)..  I'm truly sorry to hear Peta that you are not fairing so well. I hope you can establish soon what is wrong and get some relief. 

Off in our caravan tomorrow for a couple of weeks in North Devon.... bring on those cream teas..... Yum 😀 Take care xxx

[nicnac15]

Hi ladies not been on since before my holiday to ibiza so thought I'd try and catch up with everyone news.
Peta I'm on tamoxifen so far I've been ok the hot flushes have calmed down and are no where near as bad. Although I've started having headaches and feeling a little light headed this last week its not stopped me doing things but it's annoying I worry there might be more to it.
I have my mammogram 24th can't wait to get it out the way should be ok as I only had mri in June and that was clear !
Are the ladies with kids looking forward to school starting or are yours back? mine start next week I can't wait for a routine again. Xxx

[jingo_x]

I was on Tamoxifen but got changed to Letrozole after my bonus cancers that they found in May.  I had been asking to go on Letrozole anyway (original plan was 1-2 yrs Tamoxifen, followed by Letrozole), so I was happy with the decision.  

When I had the problem with the brand switch I spoke to the pharmacist and was a bit embarassed to be asking for a particular brand but he says it happens quite often and thought it perfectly reasonable to stay on the brand I liked best.

Dexa scan was a bit weird, me and one male technician in a small room, who asked me to drop my trousers to my knees, undo my bra and climb up on the table.  Not much respect for patient dignity going on there!  Found it hard to say 'if I undo my bra I will be wearing my foobs around my neck' and eventually I asked if he could offer me anything to cover me - just felt weird being half dressed like that.  Through all my treatment that was the only time I have felt very uncomfortable about where I was.  Apart from that it is a doddle, just 10 mins of lying on a bed, nothing really happens.

Hope you can get back on your old brand and see some improvement soon

x

[Peta]

Hi Jingo

Thanks for the good wishes, how did your Dexa scan go? Is it just to set a marker so they see if you have bone issues in the future?    LOL to your dopeyness, my head is fizzing so much I just can't remember anything at the moment, so I'm completely with you on that one! 🙂 

I was told that the Tamoxifen side-effects get better after six months and are worst at first.  That could of course be complete rubbish!   I was fine for the first few months.  I did change brand, so yes good point, I'll make sure I change back again asap, maybe it's that.  Anything is worth a try. 

I've only got to do two years of Tamoxifen now I'm told, and then I'm being moved onto Letrozole, so I guess if it really doesn't suit me they can move me across earlier.   Am I the only member of our group taking Tamoxifen?  

[jingo_x]

Hi Peta, sorry to hear how you are feeling.  My own fatigue is a bit sneaky and pops up and coshes me on the head when I am not expecting it, and my driving has also deteriorated - from forgetting to indicate, to forgetting which hospital I am driving to.  My memory is also shocking - just back from a Dexa scan and the guy doing it asked me when I had my Mirena coil fitted - I said I didn't know.  he asked again 'just roughly' he said.  I said I cant even tell you if I had it in before or after my kids were born so cant even tell you which decade.  Young male - just looked at me as if I was mad.

I don't know if Tamoxifen side effects are cumulative?  That may explain some of what you are feeling.  I did read that 50% of women give up on Tamoxifen as the side effects are too bad, so I am guessing they can have a major impact.  I am doing ok on Letrozole as long as I stick to the same brand, a switch of brand left me achey and tired and completely unable to sleep, back on my original brand now and feeling better for it.  Have you had a brand change recently that might be making you feel worse?

I'm glad to hear you are getting thoroughly tested by your doc and hope he works out why you are feeling so rubbish

xx

[Peta]

Lainie I've no idea how you're managing to work full time teaching little ones!  Have you managed to get any further with sorting out your swollen boob?  I hope so.. let us know if you have made progress. 

I finally went to the doc about my fatigue and nausea.  I've got to the point where I seem to be getting more tired, rather than less tired.  And I'm very physically wobbly.   I've got all sorts of symptoms which could possibly still be the chemo, or side-effects of the Tamoxifen, or something else, or .. lets not go there...   The doc is doing every blood test she has on me, including Thyroid, B12, FBC, Iron, Electrolytes, blood calciums, bone, liver and kidney profiles, fasting glucose and so on.  

Low thyroid seems a possibility, as I already have an auto-immune disease, as does my daughter and my grandmother had it.  Apparently radiotherapy to the neck can also bring on low thyroid - I remember asking on here if anyone else felt a lump in their throat when they were doing radio to the neck, Linzz I know you said you felt it there too -  so that might be something to do with it. I'm kind of hoping it is low thyroid, because then they can easily fix it.  If it's side effects of Tamoxifen I'm stuffed, as I'm so dizzy, faint and confused now I've had to stop driving the car.  I originally said that I'd carry on with the Tamoxifen whatever happened, but if I can't stand up properly, or drive and have this super foggy brain I might have to switch, this isn't really liveable with.  Anyway, maybe it's low thyroid.  I hope so! 🙂  I'll let you know what happens, I should find out towards the end of next week.

I hope you're all out there doing stuff and enjoying yourselves!  😄

[Linzz]

LainieG what a debacle! I'm so sorry you're having to put up with all this.It's been a while since the Posse had to consider booting up and flying to the rescue but just give us the word and we'll be there to menace your team into submission  But seriously, can you complain to the head of dept or someone? I verbally complained about an onc via my bcn and just saying I was more than happy to put it into writing was enough to set a fire under them and get the issue resolved xx

[bettypoppit]

Hi LainieG - vent away and frankly I'm not surprised...what a debacle and you're still no nearer to getting it sorted....really sorry to hear that you are having such a rubbish time of it. One of the clinical professionals is going to have to take overall responsibility and sort it out. I'm afraid I would have already either blown a gasket or turned into a sobbing mess....all power to you that you have kept in control. Perhaps tho, maybe it's now time to chuck your toys out?!!??  Good luck and really hope your swollen boob is sorted out very soon.

Going back to work sounds VERY full on and I hope you will soon be back in your stride and enjoying yourself anew. Xx

Hugs to all the posse xx

[LainieG]

Hi ladies. Sorry I've not been on for a while. I have been looking in to see how you're all doing but so busy since I went back to work. The first 2 days were spent lugging boxes and moving furniture after the school was refurbished in the summer holidays. Then getting used to a new class - infants after 7 years of older classes. I've been in school every day from 8 til at least 4.30 then taking work home. The first term is always the worst for paperwork to be handed in. I'm absolutely exhausted!
So pleased to hear of good test results jingo and Murphy but what a time of it you're having Murphy. So sorry to hear about all of your bad news xxxxx
I was at tge hospital again yesterday about my swollen boob. Came home furious and close to tears. It's been an ongoing @#*! Up. Went to see the plastic surgeon in May and she sent me to have it drained. When I got there the radiologist said she'd rather not do it because she couldn't see on the scan what was implant and what was excess fluid. She told the breast surgeon who wrote to the plastic surgeon and I went home with my swollen boob. Saw plastic surgeon again who was livid about it not being drained and she phoned the breast surgeon and sent me back to have it drained. So yesterday saw the breast surgeon who explained that they thought they were just supposed to examine it last time!!!! Did she forget I was there?? Waited for over 2 hours to see the radiologist who then told me (crabbily) that they had no right to schedule a clinic for 3 o'clock when she never got there before 4 at least. She did the scan then remembered me from last time and started complaining that she told them last time that she couldn't take fluid. Do these people not communicate with each other?? She disappeared for ages to complain to the breast surgeon and I was sent back in to see her. She then explained that they couldn't take the fluid for the same reason tge radiologist had just given. I was so fed up by then that I could feel the tears trying to escape. Don't know what's going to happen now because the plastic surgeon doesn't want to replace the tissue expanders with proper implants until she knows whether the fluid is infected and she can't find out because they can't take any fluid out!!!! Sorry about the complaining post ladies. I know you're all facing much worse worries but I had to vent and I can't face telling friends and family tge whole story face to face because I don't think I'll be able to without bursting into tears xxx

[Murphy1963]

Hi ladies, I hope you are all doing ok. A lot of anniversaries for all of us just now. A year ago today I had my WLE and thought that was the worst of it over. Needless to say I still had the worst to come!!! It's been a year of it that's for sure, and one I'll never forget. It's great that our little group seems to be getting on with life these days and are now able to just dip in and out of here just occasionally. I remember when I was going through my treatment that I would've panicked if I couldn't get to this lifeline on a daily basis. I will never be able to thank you all enough for the support over the past year. What would I have done without my posse 🙂

linzz im sorry your GP has been a bit stingy about your prescription. It's not as if you asked to be put on zoladex and get this se!!!! My GP has been really good I have to say, especially giving me the very expensive Femera after I asked, instead of the cheap letrozole. I know other ladies have been refused it. I would defo go back and have it out with her.

we've got a busy weekend ahead. One of my daughters is moving back through here from Glasgow. It'll be lovely having her and my grandaughter 5 minutes away from me.

Have a lovely weekend whatever you are up to xxxxx

[Linzz]

Apologies ladies if this is TMI but I was quite disappointed a few weeks ago when a GP advised that she couldn't prescribe me anything like Yes or Replense and told me to go and buy stuff myself. Found out yesterday at my Moving Forward course that these are BOTH available on prescription in my area and lots of ladies get them. I'm quite angry about it as this means she either was genuinely unaware of this and couldn't be bothered to look it up even when faced with a patient asking for help, or she was perfectly aware but putting her practice budget ahead of a patient's needs. Needless to say I'll be going back and asserting myself. The bcn says she'll write a letter if I have further trouble. Thought I'd mention it in case anyone else comes up against the same kind of issue. Ruddy zoladex

[Peta]

Thanks Betty

Yes, the walking zombie sounds like me on Sunday!  I was so tired my legs went all wobbly!  I guess if it takes a year to recover, I finished treatment in April - we're only about a third of the way through our recovery time, so 60% energy is quite good actually, if you look at it that way!  

I just hope it comes back, I'm pretty fed up with getting knackered everytime I jump around and try and do lots.  Never mind.  I'm off to the auction rooms now to see if they have any antique/old side tables. I'm trying to furnish our new house and the house is very old, 500 years, so old furniture suits it much better than new.  It does mean lots of trips to see what our local auction house has in each week, but it's just a short drive away and it gets me out of the house! 🙂

[bettypoppit]

Thanks Peta, sounds like my energy levels are comparable to yours and others......probably about 60% and often use up too many spoons in one go too!!!  I've also had both human and canine house guests recently and felt like a walking zombie by the time they all went home! lol. I just need to have faith that full energy will come back. I hope you can get relief from your hip pain soon xx 

[Peta]

It's great to hear that everyone is doing so well.  Big congratulations to everyone who has had good results from tests, isn't that fab?  I do worry about you all... 😉

Bettypoppit I'm still getting tired lots too.  I went for a six mile walk two days ago, and it wiped me out for two days.  I did have house guests too, so that will have contributed to my tiredness, but I'm having trouble getting my energy levels to rise, I still just 'run out of spoons' quite often.  My hips are sore too - I think it's the Tamoxifen, and that doesn't help, being in pain tires me out.  I think I'm  on about 60% energy, most of the time. 

It's lovely to hear about your holidays - we can't go away until the builders have been and gone, and they're not giving us an exact date of ETA or departure - so I just have to wait until they're gone and finished to jump on a plane.  The sun and sea sounds wonderfully therapuetic, I can't wait. 

[Junash]

Morning all,

Quick check in while it's quiet here, we're in portugal and family is asleep and I've got sun lounger in the shade and nobody asking me to pass a towel, apply sun cream or telling me they're hungry....

im reading and staying in touch with you all and sending hugs for those that need.

Will do a proper catch up when I'm home, luckily am here until sept 3rd - joy of school holidays - then I'm back to work for two days a week - Yaay - am actually looking forward to it as my odd one day a week is too disjointed. Got mammogram in sept - ugh

Love to all xx

[AMDriver]

Hi Bettypoppit,

I am now working days a week with an hours drive each way, I'm coping better than I was two months ago but still get very tired and have to go to bed earlier than I used to.. and I'm really pleased to have the other day off!

I find I am not sleeping well though and I am sure tha.t doesn't help.

good news for you Jingo-x and I'm very pleased to hear it.

Sorry to hear of others aches and pains not resolving themselves as quickly as we would like - we'll get there.....

xx

[Linzz]

Sorry you've been poorly nicnac but at least you'll be recovered in time for your Ibiza trip - sounds fab

bettypoppit I'd say my energy levels are quite good mostly, but I do fall asleep on the sofa by 8.30 almost every night. Trouble is I'm having difficulty sleeping properly overnight, I get a flush, I wake up, my mind starts churning, and that's me sometimes for hours. So I think its not so much fatigue as honest to goodness exhaustion. I've also kept up the running (shambling) and that does tire me out too, but in a good way.

jingo - that's bl**dy marvellous news about your results AND your son getting into uni. Hope you're having that celebratory drink as bettypoppit has prescribed

[bettypoppit]

Hi Jingo_x, well on reflection I'm probably up and down too and I do also wonder if the Tamoxifen is playing a part...I've been having some major hot flushes and sweats....yuck!  i must say i do hanker for some sun and sangria but I'm a tied with the pups now 😱😕..but sooooooo fed up of this rubbish summer ☔☔☔.  Maybe we should all think about decamping to sunnier climes lolol and thanks for responding to my query.

Absolutely woop woop fantabulous news about your pet/ct MRI results.....that must be such a relief for you and your family. With your sons great results, it must be a night to pop some champagne, open a few beers and/or have a large tipple of vino to celebrate 🍻🍸🍹🍻🍹🍺🍸🍻🍷🍹. So so very pleased to hear your great news 😀 xx

[jingo_x]

Hi bettypoppit, my energy levels are variable, just been to Turkey for a week and felt fabulous all week, swimming and in the gym every day, sunbathing (without my sleeves!), drinking beer and eating whatever I like for a change, staying up late.  The week before I went I was exhausted, creaking joints, headaches etc.  Maybe I just need to live in Turkey!

Arrived home last night and straight to the hospital this morning for PET/CT and MRI results.  All showed nothing suspicious, no sign of any cancer, just my little bone thing still sitting on my sacrum and not growing, so feeling slightly overwhelmed by my first major bit of good news!  My eldest also got amazing A level results and got his place at University, so quite a day for our family.

Had to go back to the hospital this afternoon for my gum lesion to be looked at and looks like I will need a biopsy if it doesnt clear up in a month, but I can ignore that for now!

Sleeves back on, no blue sky, no sea to swim in and torrential rain...xx

[bettypoppit]

Morning Posse, just a quick Q...I wondered how everybody's energy levels were doing as we are mostly all 4+ months on from the end of treatment? I've got much more energy than I had 2 months ago, but, have had to again start taking afternoon naps to get through the day! Other than looking after the dogs, I'm getting very little else done. Wondered how does this compare??? xx

[nicnac15]

Thought I'd check in after a horrendous week of being full of cold and sore throat fingers crossed it's on it way out my body. At the hospital today for my arm measurements for lymphodema really quite pleased as I've had pain for a week now in my left arm the doctor has said it's tendinitis but I'm not convinced I'm thinking it's the start of lymphodema hand is a little swollen.
I'm off to ibiza next week kids don't know yet thought it would be a nice surprise for them.
Sorry to hear another one of your friends has bc Murphy my friend is on her 2nd chemo this week keeping her positive though when she asks me questions. Xx

[bexter77]

Hey Linzz, 

I've had two operations on my back in the past due to herniated discs, so it wouldn't surprise me at all if it was because of bulging discs.  In fact, I have had pain in my leg too and started doing my physio exercises again to try and fix it!  It's funny really...I'd completely forgotten about how bad my back can get!  I have the doctors on Friday and have my mammogram on the 16th September so if i still have the pain then and haven't already been sent for a scan i'm going to request a scan then and see what happens.  

I'd love to invent a machine that you could put above your front door at home that is activated in the mornings when you walk through it - a little like the security checkpoint you get at the airport.  It would ping and turn green as you walk through it to tell you that everything is ok....you don't need to think about BC today...That would be ace. I'd make one for everyone! 🙂 xx

[Linzz]

bexter77, sorry to hear you are having a wobble. I've had two and they both turned out to be not related to bc. I did have some rib pain, it was never explained and went away after about 6 weeks of its own accord. I also had stitch like pain and I am told (after a CT) that it is pain coming from bulging discs in my spine. We are so vulnerable to worry right now, but I think we need to remember that old and new complaints can still spring up at any time and have nothing to do with the bc. There was a time when a diagnosis of bulging discs and possible life-long pain would have been devastating to me - but now, well, it was actually a relief 😞

Fingers crossed that your pain goes away or is at least identified soon as nothing sinister xx

Murphy, am so glad to hear your scans have come back clear - woop woop - but also very sorry to hear the other sad things you have going on. I'm still waiting for my DEXA scan, have been waiting since February! I have read lots on forums of people who had things show up on their liver etc and then they turned out to be things that had always been there, or at least nothing to do with bc. The trouble with scans is they find things that we'd otherwsie be blissfully unaware of. It must be very hard for your friend though, can't believe her bcn told her not to worry - that's not in any way helpful. Fingers crossed that she gets some better news soon. And I'm so sorry to hear about your dog, it is such a hard thing to lose them when they have been part of your family for so very long. Hugs xx

[bettypoppit]

Hi Posse, catching up as puppy Ollie is asleep! lol.  I hope all that are having scans for worrying aches and pains get good results and can then relax. Thinking of you. 

Murphy, I can't believe that yet another of your friends has been diagnosed.... how utterly pants is that. I hope her treatment goes well and that your experiences and support can help her through it. I would add that I was my closest friends third friend to be diagnosed and I'm hoping that I'm the last, but as we know bc is the commonest. Truly sorry to hear also that you have lost your eldest boy to Rainbow Bridge and I wish you strength and hugs to help you through all of this upset. xx

I myself am doing OK, although hot, hot, hot flushes and sweats are becoming commonplace for me, which is hideous whilst it's happening - BUT in the scheme of things is nothing to complain about. Stiff and sometimes painful hands, continual feeling of 'running on empty' and rather tetchy - but otherwise good.  Wish i was having a hot and sunny summer holiday but it's just not happening in North Staffs this year 😕😕😕 and Betty and Ollie cannot be kennelled, so heading to north Devon in the caravan early September with fingers and toes crossed for good weather!!!

Still thinking of you all loads even though postings have dropped, xxx

[Murphy1963]

 Hi posse, sorry I've not written on here for a while but I have been dipping in and out to hear how everyone

is. Sorry to hear you've been in pain PETA, I hope by now your feeling a bit better. And sorry to hear about your daughter having to deal with even more stuff, she sounds like an absolute trouper, no wonder you are so proud of her xxxx

Jingo, when do you go on holiday? I hope you have a lovely time. I had a great time,love turkey. It was very hot when we were there, in the 40s, but I just made sure I was always in the shade and I coped with the heat ok. I hope your sleeves won't be too much of a problem for you when you're there. I will also be keeping everything crossed for your results and your new referral for your mouth xxxx

Linzz, I hope you've had a lovely few days away. I loved your photo you posted on fb. It sounds like you had a fab relationship with your mum xxxx

Bexter, nice to hear from you again. Sorry to hear you've had the rib pain too. I wonder if it's do do with rads? My pain is very intermittent, it did start as being really sore all the time, but eased off a bit. You are doing the right thing getting it checked out if it's still there in a few weeks.

I've had a mixed bag over the past few weeks. Good news is that my bone scan came back as CLEAR, as did my mammogram, so at the moment I am feeling relatively worry free. My bone density scan came back as borderline for osteoporosis so I've been started on calcium and vit D supplements. My dairy intake is non existent (except for chocolate!!). Still sore joints from letrozole but compared to what some ladies are going through I'm thinking what the heck!!!

Bad news - my friend has been diagnosed with bc. She has a huge lump, it seemed to appear practically overnight. It is hormone neg, nodes are involved, having fec-t first, op later. BCN phoned her last week to say her scan results had shown a lesion on her liver and nodules on her windpipe. She said to her not to worry about it?!?!?! Am I reading too much into this, could this be something else rather than the unthinkable???? There was 7 of us in our group of friends, one died at Xmas from cancer, me, and now my other friend. 

We had to put our old boy to sleep 2 weeks ago. He was 16 and was really frail and really had just had enough. I miss him so much, wee soul, the house just isn't the same without him 😞

i was was at my lovely neighbours funeral on Friday. She was 72 and had bc 8 years ago. I never asked if it was secondary bc she had, but she died of bowel cancer. She was lovely 😞

Sorry, bit of a miserable post. But finishing off on a good bit of news, my daughter and granddaughter are moving back here from glasgow. They have found a house 5 mins away from me by car, they move in next Friday. It'll be great to have them nearer, and I'm hoping my granddaughter settles better here at school (she was being bullied quite badly in her glasgow school).

love to all the posse xxxxxxx

[bexter77]

Hi All, 

Hope everyone is ok.  I haven't been on for a while...It's been crazy busy at work, which is a good thing! I had my holiday, after the Tunisia cancellation (!), in Cyprus and it was amazing.  I actually forgot i'd been poorly for a little while.  Then I came back... and back to full time work after being part time for a while.  Ugh.  How I managed to do everything before, i'll never know. I feel like i never stop. 

I've had pain in my right side...and I'm scared...again.  I never used to do 'scared' or 'paraniod' and now it is a daily occurence.  I still have breast oedema, which is driving me potty and now I have this niggle under my bad boob.  It's just at the bottom of my ribs and a little underneath like where a stitch would be.  I've had it for about a week now and it scares me.  I called the BCN who said not to worry until it is around 3 weeks of pain, then get my arse back in. I've got a doctors appointment on Friday and I'm really hoping that by Thursday i'm cancelling the appointment.  Sometimes i get it on the left side, but only very intermittently, but the right side is constant.  Has anyone else had this? Murphy....i see you've had the pain and you've been sent for scans.  I do hope it's all ok for you!

It's been a year and 5 days since i got diagnosed.  How things (and I) have changed since then... x

[jingo_x]

Linzz glad to hear you are having a break as well, and that you had a chance to talk to your Mum properly about how she felt. It sounds like you had a very close relationship.

goodnight lovely ladies x

[Linzz]

Jingo_x I am quite jealous of your holiday 🙂 I truly hope all your results are good news on your return xx

Peta, sorry to hear about Mollie having more to put up with. From what you say, though, it sounds like we could do with some of her indomitable spirit sometimes ourselves 🙂

Good luck with getting some pain relief from your GP xx

I'm actually doing OK. Being able to be friends with my mum into her extreme old age, and being able to talk as we did about how she felt (basically, that 'moving on' would be a blessing) has helped a lot. I've finished clearing everything (sheltered housing, so you don't get long) and am actually away on a wee trip booked a few months back. Back to work on Monday. The days speed by, a bit surreally.

[jingo_x]

Hi PETA, I am actually testing my arms to the limit as we are in Turkey for a week. Booked this trip back in January when I thought everything would be well and truly finished by August but of course everything still rumbles on. I get my PET, CT and MRI results the day after we get back and a also a new referral for a lesion in my mouth that started back in January. My sons' A level and AS level results on the same day too, so back to earth with a bump. Shame as I am feeling well rested and my letrozole side effects seem better (even though I fell over on day one and landed on my bum again!). Swimming in the blue blue sea also highly recommended for lymphoedema!

I have been been reading all the posts and I'm so sorry to hear about your daughter. She strikes me as being incredibly brave and resilient and I am sending you both lots of love.

[Peta]

Murphy how are you doing?   You were going to have a scan on your ribs because they were sore.  Have you been sorted yet?  I remembered that there was one member of the posse who hadn't given the thumbs up yet on recent tests.  

How was your holiday in Turkey?  I love the apricots and cherries in Turkey, it must be about the time of year that they're in season out there.  Yum.  Anyway, hope you had a good holiday.

I've been thinking of you too Jingo in this hot humid whether, it must be very uncomfortable bundled up in tape and sleeves and all.  I hope it's not too uncomfortable.  😕

[bettypoppit]

Oh ladies, the pain, discomfort and heartache of life seems to be continuing......almost unabated! Peta, really sorry to hear of your daughter now having to deal with yet more I'll health, but you must be soooo proud of her. Fingers crossed the drugs work well for her AND that you get some relief for your own pain very very soon.

Hugs to you all Posse, xxx

[LainieG]

Peta and Jingo so sorry you're both in so much pain. It sounds horrible. Sending hugs and positive vibes your way. I really hope it settles down for you both. Xxx
Peta your poor daughter. She's really been through the mill and she sounds so positive. You must be so proud of how she handles all of her difficulties. Xxx
Linzz I've been thinking of you. Hope things are getting better for you. It's such a sad time fir you and your family. Xxx

[Peta]

Thank you Nicnac, Linzz and Jingo.  🙂

I've talked to the oncologist and he says it's not cording, but that surprised me, that's what I thought it was.  I've got mild lymphodema, but it is mild, I don't have to wear a sleeve and glove everyday, just when I fly on planes, which is fine.  I think I'll go to the local GP and talk pain relief, maybe they'll try the nerve pain drug that you were given Linzz.   Thanks for the kind words and comparisions, it does all help me to work out what might be going on.  I'll grill the surgeon when I see them in September, maybe it's a nerve trapped somewhere or something like that?  The arm gets stunningly cold too, so maybe it's a blood supply issue.  I don't know, thanks for your help!  I'll let you know if I do find out anything. 

Jingo sorry to hear that all of your arms and scars are playing up.  I hope that they settle down at some point in the future, that really sounds sore and inconvenient and annoying and loads of other words like that.   Linzz, I hope you're okay too, I've been thinking of you and sending you positive vibes over the last week or so.  I hope life is settling down again.  I hope your cold has got better Nicnac, or even better that it came to nothing and you fought it off, we all have enough to deal with already, without getting ill.   Anyway, wishing you well!

In other news, my daughter Mollie has just been diagnosed with  Hypocomplementemic Urticarial Vasculitis (HUVS).  That's not good news because it can negatively effect your heart and lungs.  At the moment she has severe arthritis and weird skin rashes, but I think a lot of the other weird things she has are probably down to HUVS, like severe asthma, it probably isn't asthma I'm told, but COPD.  Sigh.  She already has a congenital ACTH deficiency (along with 24 other people in the world, all younger than her), so she didn't really need something new to deal with on top of that.  I'm hopeful that the new drugs they've given her may help.  Anyway, she's being very good about it, and very mature, which helps, she's such a trooper.  I think she is just pleased that they've finally managed to work out what it is, there were so many very strange symptoms, that were just completely ruining her life, so I guess this is progress, if the new drugs work.  Come on drugs!   

Anyway, thanks for the help.  I'll let you know if I find out anything later on.  

Very best wishes to all you lovely ladies.   xxxxx 

[nicnac15]

Hi peta sorry to hear your in pain - I've had pain but not like u describe for the last month I can't lie on the side of my operation without causing discomfort it's still numb and and I seem to have now developed a thin cord like vein from underneath my left boob down over my rib cage. And have a size difference between both boobs making bras not easy to find. I'm back at my breast unit 24 sept for first mammogram so going to mention all this then. This morning I've woke to a lovely sore throat which I suspect is caught from my daughter just don't want her cold next. Xxx

[Linzz]

Hi Peta

I sometimes have a bit of pain, but nothing like what you are describing. I did have severe burning pain like someone had scoured the skin off me for a couple of months after surgery above where my breast was, it sapped the life out of me. It was nerve pain. In the end I got amitriptyline (if I recall correctly) and this helped a lot. I truly believe it stopped the cycle of pain for me, as I had gotten very worried that it would be like that forever. September seems like a long time away if you are hurting so much, I'm sure your team would be happy to see you before that - can you ask your bcn or GP to help get an appointment?  I know you are probably sick of appointments, but it sounds like you are in need of some relief xx

[jingo_x]

Hi Peta, I had severe pain for a couple of months after surgery, but that settled for a while.  A year after surgery and I am being treated for cording that runs from my elbow up through my armpit and down my side.  On my newer mastectomy side I have cording running from my scar down over my ribs. All of them are very painful to touch and stretch but can't say that they hurt if I am sitting still.  I do now also have lymphodema in my other arm, both mastectomy scars and my armpit, and when the swelling is up it makes everything much more painful. the pressure I guess.

Have you googled 'axillary web syndrome' - I found that answered a lot of my questions! did you ever see the lymphodema team about your boob? Any chance you might have cording and lymphodema

for me everything hurts less when I get my swelling down, even my chemo veins hurt less now that I wear two sleeves every day.  I now wear kinesio tape around my body which really helps the swelling on my chest wall and armpit and has reduced the pain too.

love to all the Posse x

[Peta]

A question ladies!  I'm putting it on her rather than Facebook as it's medical.

Does anyone else that had lymph nodes removed have a painful underarm/arm?  

Mine has never really stopped hurting, and it's really painful.  It feels like cramp down the inside of my arm from my elbow to my bra line. There's also a kind of skin burning feeling, like I've scalded it with an iron.   It's not just tight, it's stunningly painful and it doesn't go away at any point.  

I've tried stretching it regularly, but it just doesn't seem to make any difference.

I'm seeing the surgeon again in September,  so I'll see what he has to say, but I'd be interested to hear if anyone has the same thing, and if you have experienced it, have you found anything that helps?

I hope you're all well and good.  Linzz I hope you're doing okay too.  

[bettypoppit]

23rd July 2014 - told of bc diagnosis, so on my mind again. Get home after a few days away and my mammogram appointment has come through for 13th. As you say nicnac, we are of course expecting these appointments but it still pulls the rug.... 😱

[bettypoppit]

Oh Linzz, I'm so sorry to read of the loss of your mum.  I'm sure still a shock and of course terribly upsetting even if not unexpected. Hugs and thinking of you.xx

[nicnac15]

Evening ladies hope your all as well as can be. I had a little melt down this afternoon had a letter from hospital for mammogram even though I was expecting it I panicked ! Hoping it will be ok as i only had my last mri scan 24 June and that was all good. Kids are off school now and this 6 week holiday will be so different to last years being able to drive and not in pain and drugged up on painkillers.
Hope you all have a good weekend and the weather improves xxx

[Peta]

I'm sorry to hear about your mum Linzz.  I hope the next couple of weeks go well.  I'll be thinking of you. x

[Madam]

Linz, I am so sorry to hear of your loss. Thoughts and prayers are with you and your family and friends. Hugs to you at this difficult time, Karen x