Starting chemo October 14

[Linzz]

Hi Posse

Sorry I haven't posted, I have got out of the habit of visiting this forum (trying to 'move on') and didn't realise you were all busily posting here. I'd be up for the Glasgow moonwalk next year if others are doing it. Not sure I'm up for parading at night in Glasgow in just a decorated bra - too bloomin cold if this year is anything to go by! Might have to wear it over some thermals. I'm sure Elaine would love to look down on us in our tutus.

I can't get to the funeral tomorrow, but I know we'll all come together 'virtually' at that time to think about her xx

[bettypoppit]

Hi Posse, hope others are enjoying the BH too. We did our first 'proper' walk yesterday.... 10 miles in the peaks - utterly beautiful but it took nearly 5 hours, so very slow even by my standards. (At least I did it and although utterly knackered today, I'm feeling more confident that I'm getting my energy back). Every time I thought what a wonderful time I was having my mind wandered off to thoughts of our LainieG and sadness descended😢. I'm struggling to believe it. My heart hurts. Sadly I cannot get to the funeral as my only dog sitter is away as it's half term. I will of course be there in spirit as others will be. Anyway, does anybody fancy signing up for the bcc Glasgow Moonwalk next year to be done in tutu's in memory of Elaine? I already have plans this year (it's on 25th June) and planning it for 2017 does give us time to get fit(ter) and train as it's tough walk i understand because of the terrain! Well, just an idea.nbsp;

[AMDriver]

Hi Peta and everyone

I hope you are all well and having some bank holiday sunshine.

I specifically asked my oncologist when the 2 years were up for me. He told me that usually it's counted from either diagnosis or surgery - and because those two things are normally so close they choose diagnosis. However I had my chemo first (diagnosed 17/09/14) and then surgery (26/02/15) that they would take my surgery date.....so 26/02/16 was 1 year clear.

It's all so terrifying isn't it? the thought of recurrence and all it's inevitability - at least for us triple negative ladies. We don't have the awfulness of of Tamoxifen or Letrozole etc for 10 years - and i know from my cousin that it's horrendous, but we do face just a few short months if it comes back.....not sure if that's a good trade off or not!

I cannot make Lainies funeral this week but I would love to be there to support her family in the way she supported us all.

Love and hugs to you all xxx

[nicnac15]

Hi to all you lovely ladies
I totally understand with my all your feelings I've read I count my 2 years from diagnosis which for me will be 14th July.
I too didn't realise triple negative prognosis and how different we all are even though we've all had bc.
I think we will all have these scary thoughts for a while. I've stuggled for a bit and eventually went to the doctors this week with my tight chest and breathing issue, all my bloods are ok and he's putting it down to stress anxiety so he's give me diazipam which I start taking tomorrow not keen but I'm getting desperate to feel better.
Jingo how did your op go? Xx

Hugs to all of you xxx

[bettypoppit]

I love the 'play to the whistle ' Jingo-x, xx 

[jingo_x]

Bettypoppit I would be up for taking part in a fundraiser in memory of Elaine. Have often thought about doing the London moonwalk and can't think of a better reason to do it than in honour of LainieG.

Like many of you my head is full of worries but I always try to think that worrying is not going to stop anything, only spoil any good times I might have.  A gazillion years ago I played rugby and we were always told to 'play to the whistle' - keep going until the referee blows up - even if you know you have messed up.  So I 'play to the whistle'.

lots of love ladies xx 

[Peta]

AMDriver, it's so frightening isn't it? I've been all over the place since we heard that Lainie had become ill again, it's so hard to stay positive, or to even try to stay positive.  😕

AMD, you say that you've got another 9 months before you are two years clear, when do they count it from?  I thought they counted it from diagnosis date, which makes my 2 year aniversary 9 July, but if it's from when we had the op or finished chemo then it'd be much later.   What do you all think?  When do we reach '2 years'.

Hugs and blessings to you all, please all stay well. xxx 

[bettypoppit]

That would be a great tribute but I haven't a clue how that could be achieved.  I have been mooting this afternoon, the idea of an October Posse tutu sponsored walk, run, cycle, ride, bake in LainieG's memory? Thoughts?

[AMDriver]

Thanks Betty popping, thinking of her in tutu and dm's makes me smile. Can we do something for her funeral service that would be tutu and dm related. Would be a fab tribute to all she has done for us. ...... xx

[bettypoppit]

Hi AMDriver, I had no idea that triple negative had such a prognosis and I'm sure we can all understand how utterly blo**dy scary that must be especially for you and I do believe that it is only human to think of one's own mortality even - in fact especially, given these circumstances.  Please please don't beat yourself up.  I believe LainieG would understand....in fact today I've been thinking about and hoping that she's in her tutu and boots and keeping an eye on us all. 

My sadness is eating me up 😢

[AMDriver]

Hello Ladies

I'm devastated about LainieG - what an appalling thing to happen to someone who has shown such compassion to all of us.

Lainie and I are the only two triple negative ladies in this group as far as I know. I was told early on that if it re-occurred during the first two years my life expectancy was less than a year. Lots of women survive secondaries for many years, but very few of them are triple negative. So up to now I have felt ok about things, but now I am terrified.........I have another 9 months before I am 2 years clear.

I am also full of self-disgust that I am thinking of myself rather than Lainie and her family, so not feeling good at all.

Sorry to be so negative.

xx

[bettypoppit]

Hi Posse, how are you all doing? I can't move on from the tears over loosing our LainieG - guess it's just hit home what a bl**dy awful disease cancer is. She was way to young to pass on 😢😢😢.  (Murphy1963 I'm truly sorry to hear you have lost another friend to it too). I feel angry now, although I realise that won't make any difference. Life is sooooo cruel. 

Big hugs, take good care of yourselves - one sodding day at a time xx

[Junash]

Honestly, I can't quite believe it. bloody big hugs xx

[Murphy1963]

Hi Jingo, I hope your op goes ok today and you at last get some relief from your symptoms xxx

Peta, I think all of us will be reeling from the very very sad news about laine, it's just so unbelievable really. My friend passed away after a very sort time with brain mets in March. I constantly think about her and her young kids she left behind, and also thought about laine every single day, wondering how she was coping with this horrible diagnosis.  I hope the rest of the posse continue with good health and happiness, laine would want that for us xxxxx

[Peta]

Yes, good luck Jingo.  I hope it works brilliantly for you.   🙂

Is everyone doing okay after the incredibly sad news about Lainie? It just doesn't seem real.  Very, very big hugs to all of the ladies today.  xx

[Junash]

Jingo - good luck with surgery today xxx

[bettypoppit]

Hi Nicnac, I have several meltdown's a day when I drip! Yuck, yuck, yuck 😕.  I'm also soooo with you on the anxiety and spot on re the storylines on TV at the moment and the anniversaries coming up. Keep dissolving in a heap of tears!

Love to all the Posse and a big Posse hug to LainieG xx

[nicnac15]

hey jingo great to see your keeping busy, wishing you luck woth your LVA surgery on the 24th may really hope it works and eases the horrible lymphodema - at present mine seems to be under control back at hospital next month for arm measurements ! 

hi bettypoppit glad to hear your doing ok, despite hot flushes i thought id got rid of the hot flushes and this last few weeks i have noticed them coming back find that very strange as i havent done anything different more so at night i notice it and it wakes me up. 

Hi Peta not sure if your still on holiday if you are hope your having a great time away and relaxing, glad to hear your doing ok. 

Im back at the hospital on the 1st june for another MRI scan i pushed for it last year as im not convinced the mammograms tell me the truth that all is ok - (seen as the first one at diagnosis said it was clear) i also see my oncology consultant on the 26th june for another 6 month review.

ive been struggling quite a bit these last few weeks and kept it to myself, i dont know whether its because its coming up for my 2 yr diagnosis and so much on tv about this horrible disease - ive been suffering with a really tight chest and cant catch my breath been putting it down to anxiety but im going to book into my doctors i think.  My brain is working overtime !!!!!

thinking of you Lainey xxxxx

[Peta]

Hi Ladies!

I wondered how you got on with your scan on your hip Murphy?  I hope everything was good. Have you tried amitriptyline for your sore shooting pains in your arm?  I was put on a very low dose, 10mg initially and now on 20mg and it's made the world of difference.  I had loads of what I only now know to be nerve pain - shooting stabbing pains in arm and boob, kind of 'grazed' sheets of pain flashing across areas on the skin of my arm - and they're all so much better now I'm on these nerve pain tablets.  I really wish I'd known about them a year ago.  The only side effect I've had is that they make me slightly sleepy at night when I take them, but that's fine by me as the pain in my arm had been keeping me awake, I'm now sleeping through like a little baby! It's totally okay to stay on them for ever according to my doc, so I'm going to do that. 

Jingo, well done on getting the job, you're a star, you got it even feeling a bit under par, great stuff.  Are you going to take it when you've passed the medical? Do you think its the type of job you'd enjoy? I'm really pleased for you, whether you take it or not it must be a good ego boost.  🙂      Good luck with your LVA surgery, I hope it works for you, it sounds very promising.   Migraines, I had visual migraines daily when I took HRT and they stopped immediately when I stopped taking it, so there has to be hormonal links I think.  Femara sounds good, so keep us updates on the SEs, I have to move onto an AI after two years, so all info is useful.   And how's your leg? Any better?   

Bettypoppit and nicnac hiya to you too!  Big hugs!  🙂

Other news, I'm going on a med cruise with my daughter Mollie on 1st May. I promised we could go away on a girls holiday when her dad died, so that she had something nice to look forward too. I've never really fancied a cruise, so I'll report back, have any of you been on one?  I'm normally an independent traveller, but Mollz can't move around so well, so a cruise will suit her more I think.  She's also a huge chatterbox so she'll love talking to everyone else.  🙂

Stay well and happy everyone, lots and lots of love to Lainie if she's tuning in here.  xxxx

[bettypoppit]

Hi Jingo_x and nicnac, I'm doing OK ... despite the hot flushes and tiredness - which I find so frustrating...  feeling immensely lucky and guilty, at the same time. In fact tonight I'm feeling ANGRY - so ANGRY and I think for the first time, about this bl***y evil disease.  *scream* Vent over! 😕.

Jingo-x that's brilliant about the job and I hope your op and further treatments later this month go smoothly and work well for you. I cannot imagine how wearing these last 18months must have been. Please do get your leg pain checked out if it is praying on your mind.

Love and hugs to all the Posse and of course especially to LainieG xx

[jingo_x]

Hey Nicnac, how are you?  Been keeping myself busy with fundraising for the school, PUS I got offered a job - the one with the really awful interview back in April...how weird.  Anyway I now need to go through pre-employment screening and medical, so not actually there yet as they need to say whether they think I am ok to work.

I am having LVA surgery on both arms on 24th May to try and halt/improve my lymphoedema, so preparing myself for a long day of surgery and a couple of weeks in bandages but secretly pleased that I will be forced to put my feet up for a couple of weeks as its been a busy time.  Didn't get CCG funding for it though so having to pay.

GP agreed to let my try Femara instead of generic letrozole and that seems to have stopped my awful migraines - could be a coincidence but I don't think so.  Hot flushes much worse but I can live with that.  This weeks worry s that my left leg is hurting all the time.  Probably muscular, but I have that little 'bone thing' on my sacrum and the doctor did say that if it grew the chances were I would know it because I would get pains in my legs.  Always something to keep us worried.

Not taking any day for granted and had a big 51st birthday party a couple of weeks ago to celebrate still being around.  Despite all the aches and pains still feeling very lucky and thinking of Lainie every day 

xx

[nicnac15]

Hello how are all you ladies not seen any messages on here for a while xxx

[nicnac15]

Hey just thought I'd pop in see how your all doing,
I've had a sad day a friends hubby passed away this morning although we knew he was poorly still came as a shock. It's my father in laws 80th birthday tomorrow and have a party at the weekend so looking forward to that. Lainie thinking of you xxx

[bettypoppit]

Hi Murphy1963, thank goodness you were able to find somewhere to stay....chemo brain does seem to be going on and on and on ..... 'there but for the grace of god go I' springs to mind!  I love the Northumberland coast - heading there in June - just love it.  If I don't pick up energy and stamina in the next few weeks, I will ask for bloods again and keep in mind about b12. Thanks for the heads up. 

We've just had 3 days in the van, parked up in St Neots....fab-u-lous place for dog walking...a green corridor along the river Ouse and my 2 have had a wonderful time. I'm wacked out now and firmly routed on the sofa 😉.  

Hugs to all the posse Xx

[Murphy1963]

Hi, isn't it strange so many of us have sore arms/shoulders etc. I have had, what I've self diagnosed as a frozen shoulder since before xmas. I have very little movement in that arm, can't stretch, turn with it etc or its really sore shooting pains. I'm to have a bone scan on Monday because I also have a really sore hip, I'm hoping this is due to letrozole and zoladex but best to it checked out.

Also before xmas I started on vitamin B12 injections that I will get every 12 weeks for life. I don't know if this deficiency had anything to do with chemo but it was only found out during routine bloods. One of the symptoms I had was feeling really tired all the time. Just a thought, maybe it is a se of chemo so might be worth getting checked if your still feeling wiped out all the time Bettypoppit.

My brain is totally fogged over, the thought of going through an interview would fill me with dread. An absolute classic even for me this week though. Travelled to Northumberland on Monday with hubby, my 11 year old, 13 year old grandaughter and my pooch. 3 hours later arrived at reception only to find out I had actually booked for next Monday!!!! I didn't know whether to laugh or cry as they were fully booked!!! Some frantic phone calls and we did get something but it could've been a disaster. I'm sure your interview wasn't as bad as you think it went, and good luck xx

My friend who'd had her 3rd wle in as many weeks has had her 4th op a could of days ago, mastectomy this time, so hopefully she can progress to rads soon.

Love and hugs to the Posse 💜💜

[bettypoppit]

Oh, I'm so sorry to hear that so many of the Posse are having serious ongoing discomfort and pain, with lymphoedema and related problems.  I truly hope you all benefit from improvements very soon. My bc boob is still sore, tender, lumpy and 'thick' - which is very trivial in comparison - I'm just surprised given it's 18months since my wle surgery and 12 months since I finished rads. With regards energy, I am genuinely relieved to read that I'm not the only one not yet back to 100% full steam ahead.  Take good care lovely ladies xx

[nicnac15]

Hi peta yes I think it's similar to that it doesn't hurt to move my arm but I leant on it last night and boy did it hurt it's more annoying just want the fluid to go ! You mention pain in your armpit I have pain like that too on that side it feels like the scar tissue and underneath my arm I still have no sensation xx

[Peta]

Hi lovely ladies

Jingo good luck with getting your new op sorted.  I've heard really good things about it, so I hope it works really well for you.  I hope the job interview went much better than you think! It's so easy to be harsh on yourself when going back through the questions, I bet you really did very well!    My arm is still a complete pain, literally.  It hurts so much.   Arm, armpit, shoulder and side of ribs 'that' side. The doc has given me amitriptyline for the nerve pain, which seems to be helping a tiny bit, but I've only been taking it a week and I know it can take a few weeks and a few dose adjustments for it to help properly, it's a start though.  I think some of you may have taken it for pain when we did chemo?  Anyway it seems to help.   I've also had phlebitis (also called superficial thrombophlebitis) in my bad arm twice, which was incredibly painful - I had to take strong antibiotics because it's really not a good thing to have.  They think it's caused by the poor circulation in my arm.   Anyway, onwards and upwards, I've tried physio which helped a tiny bit, but maybe these pills will work! 

Nicnac I hope your elbow gets better soon, is it like tennis elbow?  Bettypoppit - I'm with you on the tiredness, I can do things, like an hour of gardening, but I really do have to sit down for an hour afterwards, I do still get very tired - so it's not just you!   xxxx

[jingo_x]

Ah there I go assuming everything is from the cancer!  Glad to hear it's not related to lymphoedema at least and hope it can be dealt with.

Togh interview today - difficult questions that my chemo brain wouldn't let me process quickly enough and as much of it related to my last employment I found it hard to remember that life to give decent answers.  Going to lie in bed re-living the embarassment in my head tonight I think.  Anyway 3 hours of stress, home at lunchtime and joined you bettypoppit - wiped out on the sofa for the rest of the day.  I really haven't looked after myslef for the last week and it shows! 

[nicnac15]

Hi jingo my arm is better with the lymphodema hand swelling is better too but I have a swelling on my elbow still been to doctors and they have said it is an olecranon bursa nothing to do with anything I've been through one of those things that occur normally to do with leaning alot on my elbows at work. They can drain it but fluid may come back bit worried if they drain it as I think it might effect the lymph waiting on a call from hospital for advice.
Fingers crossed for your job interviews.
Bettypoppit I know what you mean about getting tired very quickly I'm full on back to work and running round after 2 kids its weird to think it will be 2 years this July I was diagnosed and sometimes I sit down and think did I go through all of that !! Xx

[bettypoppit]

Hi jingo_x, I'll be keeping everything crossed that the surgery can finally bring you some relief from what must be a very draining (no pun intended!) condition. How come you cannot get it done on NHS and are having to pay yourself (if that's not an impertinent question)? Really hope your job interviews go well this week and that you have the opportunity to choose which one suits you best!  I've realised yet again this last week, that I still don't have the staying power I once had. We've had work done in the kitchen creating dust clouds and yet by the time I've walked the dogs and done a few minor domestic chores I'm ready to drop! So I've only managed to clean a cupboard a day.... very frustrating and given that I look so well, f&f aren't getting it 😕. It's been a year now, so I was expecting to be roller skating through life by now lol. I take my hat off to you guys who are working.

Love to all the Posse xx

[jingo_x]

Hi nicnac15 how is your arm doing?  I hope it's settled down now?  And LainieG how are you doing too?

I am just back from a trip to Oxford to explore LVA surgery for my lymphoedema.  Elated to hear that I am a suitable candidate for it, but it is eye-wateringly expensive.  Planning to try and get it done next month and hope it has some impact on my arm as nothing else seems to work!  Two job interviews this week too...all very stressful

love to all the Posse xx

[nicnac15]

Hi all,  Hope you all had a nice easter, i got back off my holiday wed so been washing clothes most days just the ironing to contend with next, the kids are still off another week so ive got to keep them entertained too. 

having an issue with my left arm at the moment whilst on holiday my elbow started to retain fluid and even now ive been back a few days its not gone down so im worrying about this now !!!! doesnt help its the side effected from my op and where my nodes were taken out. im going to try and get in my doctors tomorrow to see what they say.  

Hope your doing ok Lainie xxxx

[bettypoppit]

Me too LainieG, how are you doing? Thinking of you xx

[Peta]

Hi

I just wondered how you are doing Lainie, I hope you had a nice Easter at home with your family.  xxx

[Murphy1963]

Hi lainie, so sorry to hear you've been stuck in hospital for so long but really pleased you got out today. Nothing feels so good as your own bed does it!! Is this your second chemo you'll be having on Friday? Fingers and toes crossed you fair well on it xxx

A very sad day here today, my husband's ex and a lovely friend of mine passed away last weekend, and we were at her funeral today. I went to uni in 2000 and met her there and she introduced me to my now hubby. They had lived together for 5 years, split but stayed friends. So so sad.

My other friend has had her 3rd op today to try to get clear margins. Not sure yet whether they tried another lumpectomy or went for mastectomy. Hopefully she'll get clear margins this time and be able to move onto rads soon.

Hope everyone has a nice easter weekend coming up, and the beautiful weather continues. Long weekend off work and looking forward to the break.

Hugs to all xxx

[riversidedawn]

Thinking of you embarking on all that again. Can't imagine how that feels. Hope you have a good support network in place and can tap into the positives (?) gained from experience.

[AMDriver]

So good to hear you are home LainieG - it must be a huge relief.

I hope you get to start chemo again soon too - though I never thought I would say that....

Loads of love and hugs to you xxx

[bettypoppit]

Hi LainieG, great that you're home and great that you will soon be back on track with your treatment. Enjoy your own bed tonight xx

[LainieG]

Hi everyone got home today. The steroids seem to be doing their job just now and I've to see the oncologist on Thurs with a view to starting chemo again on Friday. Hopefully back on track xx

[Peta]

Hi Lainie

I'm sorry to hear that you've been stuck in hospital.  Any news on when they might let you go home? I hope that they'll let you out in time for the Easter break, at the very latest.   Spring is starting to creep in here now, the hedges are just starting to sprout, I hope you're home to enjoy it very soon.  I'll be thinking of you... xxx 

[jingo_x]

LainieG sorry to hear you have bene having such a cr4p time...lengthy stays in hospital are exhausting and you must be desperate to get the swelling under control and get released.  I hope it's soon and hope your implant surgery is healing in the meantime.  Lots of love to you xx

[riversidedawn]

Oh LainieG hope they sort a good cocktail for you very soon.

[bettypoppit]

Hi LainieG, pants you've been trapped in hospital for 2 weeks and i hope that you have been looked after well. As Linz says, your posting on here is perfect so the steroids look to be doing their thing. Hope you are home with your family really soon. Thinking of you every day, hugs xx

[Linzz]

Hi LainieG. That was all perfectly typed so the steroids must be doing their job. Hope they let you away home soon xxx

[nicnac15]

Hi LainieG great to hear from you sorry to read your in hospital I hope they've been looking after you in there. Will they be able to tell you if the steroids are
working ? Will keep my fingers crossed your out of there very soon and back with your family. Xx

[LainieG]

Hi Ladies. I haven't been on for a while because I've been in hospital for a while. I had to have one of my implants removed then went home and had to come back in because I became really confused and couldn't speak properly. I was sending texts full of gobbledygook to friends. They thought at first that I had an infection but after a ct scan they discovered it's the cancer in my brain causing swelling so I'm on steroids to try to reduce the swelling. Hopefully getting home in the next few days. I've been here for almost 2 weeks xxx

[Codiesue]

Hi Dawn let us know how you get on, we are thinking of getting together again in summer Ange is 60 this year, hope you can make it xx

[riversidedawn]

Me too, crap memory. My onc and surgeon want me to see one of them every 4 months. As I'm waiting recon I've seen surgeon weekly recently, but need to see onc for MRI results soon.

[bettypoppit]

That's reassuring in a way Codiesue - counting down 6 more months then!