Starting chemo October 14

[LainieG]

Oh that's lovely Madam. You must be really proud of them. I think you should post it. I'd love to see it xx

[jingo_x]

you must be very proud of them Madam.  I asked my older boys if they would like to some fundraising for cancer research and they looked at me blankly...i guess not!

Date for anyone who can meet in London is 17th June btw. ping me on facebook if you think you can join in x

[Madam]

Great idea to meet up. Think Jingo suggested June 16 for us to meet up? and we look to both be at CCL Parkside regularly in June. I will start radio on June 4 every day. X Ladies, thought I would let you all know that today my kiddies' school is holding elections for their charity of the year and I am proud that my two, aged 9 and 7, have gone to school to present to their fellow pupils and ask for support for Cancer Research UK . They have done their own script and ppt. presentation! Apart from a line about children and Cancer which I thought a little too scary for primary school! I might post it.

[LainieG]

Junash great news that you're nearly finished. We'll be shuffling up on the podium to make room for you. Thanks Murphy for your lovely words. This forum always makes me feel better. Don't know how I would've got through this without all of you. The support has been amazing. Sending you all hugs xxxx

[bettypoppit]

Hi Junash, that's great news that you are nearly at the end of your rads marathon...soon be done and dusted. I hope your skin is holding up too xx

[Junash]

Very nicely put Murphy xx

Jingo and madam I finish rads next Thursday - whoop whoop - and I'm free from hospital & work for a whole 6 weeks. A meet up near Wimbledon / SW would be good - fairly easy for me to get on district or Northern line from London bridge. Would love to meet up

[Murphy1963]

Hi lainie, sorry to hear you have been feeling down. You are normally so up beat and have been a huge support to all of the posse. You have certainly had your fair share of hospital stays, illnesses, se but you've just got on with it, and still been there for all of us. Anniversaries do bring back lots of memories and I can appreciate how this anniversary is and will probably always be bittersweet for you. I think you well deserved to have a good "greet" and I hope you felt the benefit of it afterwards. It truly is a unique situation you are in, and it's such a tragedy you have lost your two cousins, but I can bet my bottom dollar, if they are anything like you, they will be glad this information was made available and to be able to help the loved ones they left behind.

We have all been through the mill and I am so proud of us all. I don't know about anyone else but I certainly feel a better person after all of this. Big hugs to you lainie xxxxxx

[jingo_x]

Madam sent you a message on FB, might have gone to your 'others' folder.  If anyone else is nr SW London over the coming weeks do give me a shout as well!

[Madam]

Jingo, would be great to hook up. I am still in London yes, going to Marsden off and on and going tomorrow I think or to Devinshire place ? for more drainag with the recon surgeon... but will start Radiotherapy in June at CCL, Parkside Wimbledon. Live in Kew so do let me know where a good meeting point and when suits you. Am on the Facebook group...

[LainieG]

I was in a very low mood last night. Just started to think about how this all started and couldn't help thinking about the family members who might still be here if they'd had the information that I had. I cried a lot last night. In fact I think it was the most I've cried throughout this whole process but I think i needed to do that because I've been very stoic and I've not really allowed myself to wallow or have a good cry and I know looking back that that was not a good thing for me but it's just the way I've always been I'm afraid.
Peta thanks for your admiration but I think we all deserve it for what we've come through. I didn't need radiotherapy and from what I've been reading here its a very gruelling process and to go through it after chemo sounds horrendous. I'm still recovering from the chemo and you've all gone straight into rads. I'm full of admiration for everyone on this forum for getting through it all (including all the extra unexpected hospital stays and side effects we've all suffered) So hugs to everyone 😙😙

[Peta]

Lainie, I'll remember your posting below for a very long time.

I'll send you heaps of admiration for keeping on going with all that's come your way and is going on around you. I hope it lifts and gets easier soon.

[bettypoppit]

LainieG, such pain and sadness but somehow yes, something to be thankful for. It certainly is a mixed bag of emotions for you and you certainly have had a very very long journey. You will surely soon be through the tunnel of treatments soon and properly moving on. Hugs xx

[LainieG]

It's funny how dates mean so much to all of us. Moods can change because of an anniversary of diagnosis or completion of treatments and these dates will probably be with us for a long time. In a few days it will be 2 years since the death of my cousin from ovarian cancer. It was at her funeral that I found out that the faulty BRCA1 gene was in my family and this whole nightmare began. It's a bitter sweet anniversary because life changed drastically for me and my family but if I hadn't known about the gene then the cancer wouldn't have been found so early and the outcome for me could've been very different. So good luck or bad luck? I could look at it either way but I prefer to think of it as good luck. If my cousin hadn't been tested while she had cancer then the rest of our enormous family wouldn't have been forewarned. Luckily there are not too many of us who tested positive for the gene and those of us who did have taken positive action to prevent cancer (although I was a little late). It's an odd time. I feel desperately sorry for my 2 cousins who died 5 weeks apart 2 years ago and thinking back over the last two years is a look back at a horrible time in my life but I also feel lucky that I had the information that saved my life. So I'm not sure how exactly I should be feeling at this moment in time. Sorry a bit of a moody post xxx

[bettypoppit]

Hi Madam, you are having SUCH a tough time of it .... still, so absolutely no wonder to me that you are miserable and crying...who wouldn't be. I've not been through half of what you and other posse girls have, but my brain is mush, add the fatigue and I get sooooo fed up and miserable (in fact like I was yesterday)! You've been juggling lots of other life stuff too....it all adds up!  As Jingo says, the stamina required to get through this. So please don't be hard on yourself and just believe that you will get to the end and the podium soon xx

LainieG that's pants. Fingers crossed you can get an appointment presto pronto xx

[jingo_x]

Madam, sorry to hear you are still slogging away with healing.  I remember last year when I went through 6 weeks of not healing and it is mentally draining and I would say perfectly normal to cry all the time, at the drop of a hat.  Mind you I still do that! Maybe they suggest anti-depressants just as a quick fix to help you get through a few weeks?

Next week it is one year since I first went to the GP and at times it feels like the longest year of my life, and then at other times I feel like I lost a year in the blink of an eye, but one thing is for sure, we all need a huge amount of stamina to keep going at this point.

You will get through all of this and you will heal and get on with your treatment.  In the meantime if you are still in London or at the Marsden and feel like a visitor or meeting for coffee then let me know.  I'd be happy to come and meet you and let you have a rip-roaring moan-up at someone new! I'm only a couple of miles away.

xx

[LainieG]

Oh Madam what a rotten time you're having. No wonder you're feeling so down. It's perfectly normal in your situation to feel like that. Let yourself cry and hopefully you'll heal soon and start to feel a bit better. Thinking of you and hoping things get better for you very very soon. Sending lots of hugs 💖 💖 💖

[Madam]

Thanks Jingo! How am ia. Well, struggling! The haematoma continues to be drained. And then fills and is now slightly infected. They are less concerned about it now as thought it was tissue , skin trauma or something. I am struggling mentally as just seemed to have hit the wall in terms of trying to feel motivated and positive. Just don't. Have cried every day since surgery I think and now have medical team thinking I am suicidala, surely, no one jogs through this chirping happily? I have just had enough of doctors, needles, anti biotics etc. See the radiologist this eve so guess that means radiotherapy is a goer! But delay possible due to non healing breast! Abdomen seems to be hesling ok and I can actually see I may just have a flatter tummy! Meant to start Tamoxifen in June but they are wondering about anti depressants! God, what a jolly post writer I am today girls! Tell me this is normal after eight months of diagnosis, surgery, chemo, mastectomy and reconstruction, infection, battling insurance company, relocating, being a mummy...??. Etc? I think some of you have coped with worse? Xx

[LainieG]

Wow! I'm tired just thinking about all the exercise everyone's getting. I can't walk very far without having to stop and get my breath back lol. I've been out with Judy but only for short walks, about 30 mins. I'm on my feet all the time at work so hoping that's improving my fitness levels. I seem to have lost my sweet tooth since chemo so losing a bit of weight because of that. Still feel so fat though. I liked your wee joke about cheating on weight loss jingo. Well done losing all tgat weight. I'm impressed.
Re my mri. It was supposed to be today and my boss reorganised the day so that I could get away early. Got home and OH told me the hospital had just phoned. The mri machine us broken!!! They're going to phone me tomorrow with a new appointment. Unbelievable! 😕😕

[bettypoppit]

So well done Jingo_x for loosing all that weight and still up for loosing more...I take my cowboy hat off to you as i find it such a struggle. On a 5:2 fasting day today and I could eat my way through the fridge right this minute! lol. (p.s. that last comment of yours about cheating really gave me a chuckle 😉). xx

Great that we all seem to be healing: mind, body and soul.

[jingo_x]

Hi Peta, the Eurotunnel policy is just a normal worldwide travel policy, not just for travelling with Eurotunnel.  It was so simple that I kicked myself for wasting time with all the others.

Re the weightloss I lost a stone after diagnosis, then didnt try and lose weight during chemo as I felt it was so important to eat well.  Have lost 1.5 stone since end of chemo. So it has been over 10 months really but hoping to lose another 2 stone by the end of the year as soon as I can do some exercise again.  Of course by boobs weighed 2kg so I have cheated a bit 🙂

[Peta]

I'm not sure that we're not that similar bettypoppit.  I still have to stop and have a breather and I'm still paying for my complete overuse of spoons at the weekend!  My legs ache hugely still, I think it was wearing heels for the first time in two years, and I'm still tired.  I got up at 10.30am today, lazy me.    And you've done a eight miler, flat or not!  I'm feeling much better than chemo time, but I'm maybe at 50-60% energy now maybe?  Everything I do I get some sudden tired payback from it, there's no way I can just do what I want.  So don't be too frustrated with yourself?  We'll get there, slowly slowly! 🙂

Jingo I'm glad to hear that your latest surgery is recovering well.  Thanks for the info on travel insurance too, do you have to travel with Eurotunnel to take out the insurance do you know?  And congratulations on your hugely successful diet!  Did you lose weight during chemo and radio or has your weight just plummetted afterwards?  I must go on a proper diet again, I need to lose my chemo stone, but I've been too tired and too busy so I've just faffed around the issue so far.  Maybe next week... 😉

Mystery Mouse well done on the race for life!  It's so good to hear of people doing positive things again now. 😄

[jingo_x]

Hi MM

re travel insurance, I had problems back in March as I wanted to go away 2 weeks after rads.  All the 'pink' insurance companies rejected me or put a clause in to say anything related to BC was excluded.  Finally I called Eurotunnel travel insurance and they have the simplest process - all they want to know is that all your conditions are stable and no one in the family is terminally ill.  Cheap too.  Wish I started with them!

Well done on doing Race for Life...makes my 'noob' sore just thinking about it 🙂

I am in the fatigue group as well and my familly now getting used to talking about spoons - thanks Peta.  I budget my energy when i can to make sure I can do thr things I want to.  Just back from a 3mile walk to the shops and back and I know thats me done for the day so will stick to paperwork this afternoon, but going out tomorrow evening so will do less during the day and keep some spoons back!

My mastectomy is healing very well (touch wood) and little fluid so far - been wearing a compression vest given to me by my lymphoedema nurse.  Its hideous but I think its helping....wish I'd had one last year!  Have ventured out a few times completely flat now and quite like the feeling and the way it makes me walk, but also like taking the stuffing in and out of my comfies and choosing which cup size I want to be.  I have now lost 2.5 stone so really feel like I have a completely different body and need to get all my old clothes out soon and start working out what I can and can't use with this new body!

Good luck Lainie with the mri - I hate the things as well.  When I had my breast mri they put me in face down with a hole in the bed and a little mirror underneath and I found that much easier than my head going in the other way up.  Perhaps they could do it face down for you?  The nurse said most people cope better with it.

How are you doing as well Madam?  

love to the rest of the posse, sorry if I haven't mentioned you but I am thinking of you all!

[MysteryMouse]

Sorry to hear that you have more tests to come LainieG I hope it goes well for you.

Has anyone looked into holiday insurance at all?  If so who would you recommend if any?  Would welcome your thoughts on this as thinking of going away in the summer 🙂

Very achy today after taking part in the 'Race for Life' on Saturday.  I think I overdid things big time still my own fault.  It was a lovely day though and the weather was good and the experience was so empowering and uplifting so I am so glad I was able to take part.  Thanks everyone for your support 🙂

Just back from walking 'Monty' and now feel like I need a nap! 😞  Think it was Bettypoppit who is worried about feeling tired?  I just think we all started from different fitnes levels and it has affected us all in different ways.  I don't need need naps during the day anymore but have to go to my bed by 9pm as soooo tired.  I do still get out of breath sometimes though.  Just listen to your body we will all get there in the end!!  

Onwards and upwards posse!! 😮

MM

xx

[bettypoppit]

p.s. I did manage a slow, steady, flat 8 miler on holiday in the Cotswolds....but was pretty much good for little else for the rest of the week!

[bettypoppit]

Hi PETA, great to hear that you have been 'giving it some' on the dance floor 😀 and enjoyed yourself. Way to go Posse girl lol.

Thanks for all the info re your energy. I finally had my final review with the onc consultant last Thursday and she is so convinced I'm doing great and the lack of energy is residual se's still, that she doesn't want to blood test me yet. But if no improvement, do some in 3 months 😕. Anyway, I'm getting out with Betty every day now - usually in the morning for about an hour, but on the flat and only 1.5 miles I guess. I usually need to rest a couple of mins when out! Then I need to rest when I'm back. Then I get on with an hour or so of housework or gardening.... then rest again. Usually apart from fiddling about that's me done and a snooze needed.  Every few days I'm back to sofa surfing for a day - like today! Sounds like I'm doing OK, but not in your league although I would think you were much fitter than me, before all this started. It does put my frustration into context, thanks xx

[Peta]

Hello ladies

I've been catching up on all your posts as we went along, but couldn't really post from my phone.  I've just got back from a wedding in Scotland and I had a good time. I was good and even wore my magic sleeve and glove on the flight, the one I'm supposed to wear all the time but don't.  I managed to find the energy to throw some shapes on the dancefloor which made me feel great and young and well.  I felt deservedly awful on Sunday though.  😕

Bettypoppit, I'm sorry to hear you're so tired. Linzz has the right idea with the blood tests, its a good place to start.  Do you manage to be reasonably active and go for a walk in the morning, or are you really tired all through the day?  I get tired in the afternoon if I go for a walk in the morning, I can do 3 miles happily now in an hour, that's uphill some quite steep bits and through the woods etc. - I'm giving you distances etc so that you can compare how you feel.  If I've done a good brisk walk then I have to sit down and rest a bit in the afternoon, but I don't fall asleep.  How does that compare with you? You might just be doing quite a lot?  I have visions of you romping over the moors with Betty!   I don't have little kids either now and I'm not working so I might be a good comparision stick, I found that the regular morning walks really helped me, plus loads of sleep at night and I lie-in often too. 

Junash and AMDriver I hope the radiotherapy is going well and your skin is holding up well.  Junash I started taking Tamoxifen after radio and I'm fine so far, no real side effects. A few hot flushes. My hip joints are a bit stiff too, but they were a bit stiff before all this so just I'm ignoring it.  I was most worried about 'libido' but I'm not affected by any libido issues, so that'll keep me happy. I think sex-related positive endorphins are medically good for me, or something like that. 😉

Lainie, its really good that they're investigating you so promptly, I can't beleive that you have another new 'thing' to cope with on top of everything else.  I hope they sort it out really quickly..  I'll be thinking of you. 

I hope all of the ladies have a good week and everything goes smoothly for everyone.  xxxx 

[LainieG]

Thanks everyone for your lovely comments. I'm still dreading the mri. I'm claustrophobic as well as needle phobic lol. I'm a big woos. Scared of my own shadow lol. So glad I'm back at work. It takes my mind off it all. A class full of children is a very good distraction. Xx

[nicnac15]

Just catching up sorry to hear you have a new worry lainie g hang on in there fingers crossed it will be something easy they can sort and you will be back on track im no time. Big hugs xxxz

[bettypoppit]

Really sorry to hear that you are going through more horrible stuff LainieG, you certainly have had more than your fair share! Fingers tightly crossed that they can find out what's wrong and get you treated. Hugs, xx

[Murphy1963]

Lainie, sorry to hear about your latest worry. You have definitely had more than your fair share. I have everything crossed that they get to the bottom of it asap. Big hugs xxxxx

[LainieG]

I don't have a date yet Junash. They're going to contact me to arrange it. Xx
Debtex that's def the strangest side effect lol. Must be very annoying xx

[Debtex]

Oh crap lainie . I wonder if that is like the peripheral neuropathy type thing only in your eye ? I hope it's one of those things that rectify on it's own . Bloody needles , I've gone quite needle phobic too now .
I am bidding for the ' most bizarre se now ! ' .... I get songs lodged in my head for weeks and weeks , it's so bizarre and quite annoying ! When I was very poorly on docetaxel and in a and e I had Rage against the machines 'killing in the name of ' going round and round in my head . I'm not sure if anyone is familiar with their work , it's good but combative rappy anti everything ! Not very soothing . The inner song has changed now but I almost dread listening to anything in case it gets stuck on repeat play in my head again .

[Junash]

Lainie its completely c••p, hang in there, we're all with you. Whrn is the MRI? xxx

[LainieG]

I'm having a brain MRI to try to find out what's going on with my eye!! Not looking forward to that. Can't believe this is happening after the last couple of years. Thought I'd had my share of hospitals and illness.

[Junash]

Lainie - great big hugs heading your way, hope they get to the cause and sort it out really quickly. Bloody needles, you've had more than your fair share ❤️

[Linzz]

Oh cr*p LainieG! I hope they work out what's going on and start treatment to fix it for you asap

[LainieG]

Re the eye problems I mentioned earlier. I went to the opticians today and she made me an emergency appointment at the eye hospital for this afternoon. I have optic neuritis which is inflammation of the optic nerve. My field of vision is seriously compromised in one eye. The doctor isn't sure what's causing it and is going to speak to the consultant tomorrow and then contact me. I'm also being referred to a neuro opthalmologist. They also took blood!! Bloody needles!! Thought I was finished with hospitals and needles for a while. 😕😕

[Junash]

That's amazing the price difference! Hope you get the ones you want.

I've been reading up on tamoxifen - I'm due to start end of month - differing opinions as to which brand, think the bindings can cause various side effects. I suppose it's a similar situation and trying to find one which suits us individually the best.

[Codiesue]

Thanks Murphy I hope so to but if not I will definately try for Femara we have enough to put up with xx

[Murphy1963]

Codiesue, I started letrozole middle of January (so 17 weeks), and for me the symptoms from se have got progressively worse. We're all different though so hopefully yours will settle down xx

[Codiesue]

Lets hope you get a few months in before he notices!! xx

[Codiesue]

Thanks Murphy, if it is better I may have another go at asking. How long have you been on Letrozole? I am only just starting 3rd packet so hoping things may still settle but really don't want to put up with aching and stiffness that I have at present.

Thanks again Sue xx

[Murphy1963]

Codiesue, your GP was spot on. Just been to pharmacist and £4.20 per month for generic letrozole and £84.86 per month for femara!!!! Aaaaaaggghhh, I know he'll stop them when he finds out 😞 xx

[Murphy1963]

Hi Codiesue, thanks for your post. I have to say I was aghast when he said yes to it (without me having to plead!!!). I don't think he knows that it costs so much, he wasn't aware of this particular brand, and his drop down menu on his computer for prescribing meds didn't mention it, he had to look up his MIMS!!!! I knew it was expensive but didn't realise how much. I'm just off to the pharmacy to pick it up so will let you know how I get on with it xxxx

[Codiesue]

Morning Murphy, just browsing from November Starters and noticed you had managed to get Femara on script. I asked my GP for it as have been taking Letrozole for 9 weeks and very stiff especially in the mornings and painful knees, hips, fingers in fact most joints. She said No as Letrozole costs £4.20 per month and Femara £90 per month so said she would get into trouble fro prescribing it!! Well done...hope it makes things better fro you. Sue xx

[bettypoppit]

Thanks Linzz, my mum thinks I ought to be getting checked for an under active thyroid, given that I've been 'on the tired' side for years. Think a few blood tests might be a good next step. Good luck with your office move xx

[Linzz]

Bettypoppit, I expect fatigue is like other side effects, in that affects some more than others, for no apparent reason. I wouldn't describe myself as fatigued but I fall asleep every night on the sofa and then go to bed really early. My poor OH is a bit fed up as I never manage to see the end of anything we're watching on TV and am always asking "what happened?". Yet here I am up at 5 am today (stressed about moving offices today - great timing).

I know you will be asking your onc about it today, but I've read about people who were struggling with fatigue in the months after treatment and eventually found they were anaemic (or had low levels of other things I'm afraid I can't recall) and after getting that minor condition sorted they felt so much better. If your onc tries to reassure you it's "just" fatigue you could at least explore whether there is anything they can check for? (For instance I later found out that during treatment I had been mildly anaemic but they did nothing about it as I wasn't bad enough to need a transfusion. I'd have appreciated some efforts to make me feel better, or even an explanation of why I was so darn tired all the time would have helped!).

Good luck today x

[bettypoppit]

Great, great news Jingo_x, time for another beer 🍻. xx

Debtex, it's good to hear that your feet are improving albeit sloooooowly. Fingers crossed it keeps improving. Oh my word... how astonishingly crass and insensitive of your boss! Hope you have a while yet before you have to face any more of that xx

I've got another attempt at meeting my onc for my final review in the morning...fingers crossed, but I'm half expecting that she won't be available again 😕.  Short list of ongoing se's. In fact just the fatigue thing that's really bothering me. I just don't know why I seem to be struggling so much more than other posse members! I'm not working and I don't have children, yet the tiredness defeats me every day 😕. I'm doing more than I was just a month back, but still getting exhausted and falling asleep most afternoons. Any ideas???

[Debtex]

I'm agog jingo , thank god the bloody thing is
' in the bin ' as my surgeon once said . Best wishes to you and I do hope your son is doing well . Madam fingers xd you heal quickly and that the horrid haematoma is quick to resolve . Peta loved hearing about Molly , hope she loves her shiny new place ! Murphy happy belated Birthday x . Me ? Feet sloooooowly improving but still drugged up in the mornings due to the amytriptylline . Oh at my recent meeting with work to discuss my return , I was asked by my manager ... Are they sure they have zapped everything that needs zapping ? .... Words fail me ! I just said ... You would hope so wouldn't you ! God what a bloody laugh ! Love to all xx

[Linzz]

Great news on all fronts Jingo!

Murphy, that really did make me laugh. I don't see why we should put up with pain if we don't have to. I've got emla cream on my repeat script and last time I put it on 2 hours ahead of time and didn't feel a thing. The CT I'm getting next month is with contrast which I think will include a cannula. Tempted to put some cream on ahead of that too!