Breast Cancer Now Forum

Hello lovely Moonbeams, apologies for a general lack of posting over the last few weeks, its been a crazy busy time but you have all been in my thoughts every day. I just wanted to wish you wonderful ladies a VERY HAPPY NEW YEAR and sending you lots of love and good wishes for 2014 which will hopefully be a hell of a lot better for all of us than 2013. You have all been such a wonderful support for me through such a horrendous time and I'll never forget that, we may have never met (well apart from Zuzy) but the bond I feel for you all is enourmous and I really hope I get to meet some of you next year. Much love to you all - I'll be raising a glass of champagne tonight in your honour. Aly xxxx ... View more

Morning all - Penny I think that quote sums up my feelings exactly, I have to say my chat with a BCC helpline person last week really helped and I have signed up for peer support - where someone who has gone through similar treatment / has similar circumstances but is a couple of years down the line calls you up for a chat and to talk through your worries.   On the fatigue front - little and often on the exercise is definitely the advise we were given at the BCC Younger Womens forum, they basically said that we have to accept that we are pretty much back to square one fitness wise and need to slowly work up our stamina and allow our bodies to recover. I have also been 'prescribed' vitamin D drops by my nutritionist at The Haven which I think can really help with fatigue - I notice when i forget to take it. Ive also heard that the supplement Coq 10 can be fantastic for fatigue but you have to be careful not to overdose as you'll be bouncing off the walls!!   Lastly I have been using a Hypnotherapy app which is from the Hypnotherapist we also had at the Forum - I'm sure I can share his name here as it was a BCC event - Patrick Browning, there are a couple of ones for Anxiety / Worries which I genuinely believe have really helped as I've stopped worrying since using them, he also does ones for relaxation and sleep. Not for everyone I know but just a thought.   I've been really lucky and my hair has grown back very quickly and now resembles a normal pixie crop, I've had loads of compliments from people who have no idea that I've been having treatment so I'm really chuffed. its definitely greyer and curlier but I'm thinking of keeping it really short for a while as I rather like it!   xx ... View more

Such great news Jo - so pleased for you. xxxx ... View more

Hi everyone,   I've just got off the phone to the BCC helpline, its the first time I've felt the need to call them but just really needed to rationalise everything going on in my head a bit, I've been really struggling the last week to come to terms with treatment being over and moving on, I'm afraid of every little ache and pain despite the clear CT scan and its really getting me down, every little niggle is a constant reminder of cancer for me and in no way do I feel 'cancer free' even though all signs indicate I am and should be skipping happily into my new post treatment life.   It was great to be reassured that this is normal and to be given a few coping strategies, I've also signed up to the peer support programme. I just wanted to let anyone whose also struggling to cope post treatment that they're not alone, the counseller said that it's very common for people who have coped well up to now to go through a low period as everything sinks in.   One thing I wanted to share which the counsellor thought might help me as I am quite a rational/logical person normally was to write down all the facts about my diagnosis and treatment to give me reassurance that it is much more likely that the cancer won't return than it will. I think this will really help me 're-set' my brain going forward, and then to take that with me and look at it whenever negative thoughts crop up. For me I can see this really helping. I'm also going to sign up for some more counselling at The Haven.   It was so fantastic to meet Suzanne last Friday and we are gunning for a moonbeam meet up in the new year - we wondered about finding a city thats convenient for us all to get to and maybe an overnight stay for those that can....Birmingham? London? Cambridge? Oxford? Coventry? what does everyone think? We wondered about late Jan or some time in Feb, am assuming a weekend would be best?   Penny - I'm so glad you are recovering well from the op, sorry you've had to have the drain back in - hope they can take it out soon. I hated the drains! Rachel - great that you are feeling ready to get back to work in the new year and getting fitter - I feel a long way off this at the moment so am looking to you as my inspiration. Sarah - I'm sure the lumps and bumps will turn out to be nothing - but sending you hugs as I know how worrying everything can be at the moment Jo - hope the scan went well yesterday and you get your results quickly I've been thinking of you. Karen - hurrah for sleeping in your own bed - it must have been fabulous   Anyway love to you all - I'm beginning to realise that this is only the start of the journey for us all not the end at all.   xxxx   ... View more

My scan is all clear ...... and breathe ....... thanks so much for all your lovely support ladies - I shall be raising a large glass of wine to the moonbeams tonight. Now let get that new year meet up sorted. xxxxx ... View more

really hope they get it sorted soon Jo - like Zuzy said good that they take these things seriously but can understand your frustration / anxiety I hope they can give you the answers soon. x   ... View more

Dodo, how frustrating for you I hate the way they say somethings concerning them but can't give more details, sends the mind into overdrive - it feels like everythings a bit of an uphill struggle at the moment for some of us.   I had a minor frustration today - had my CT scan on Monday and already had an appt with Onc in diary for today so BC nurse said to ask about results as chances are they'd be in for that so got myself and OH all worked up and ready and then of course they weren't in, Onc didn't even know about it as she's a different one to the one who ordered the scan. Very frustrating as the scans were there on the system just not the report so now we have to wait for BC nurse to chase the report and then book in an appt to see the Onc next week - my hospital refuse to give results over the phone good or bad. Tomorrow is my last day of rads and I really wanted to be able to celebrate this weekend but now feel I can't. Grrrrr!!!! Sorry minor in the scheme of things but tomorrow felt like such a milestone - end of active treatment and now it doesn't feel like that at all. Marie really sorry to hear about your friend, how horrible. In terms of moving on my hospital seem to take it quite slowly, I get another appt with Oncology in 4 weeks followed by a one on one with my BC nurse to talk through everything in 6 weeks and have also been offered a moving on after active BC treatment course which the hospital runs - its a 6 week course and definitely think I'll do it. Dodo sending you lots of hugs - we'll get through this I promise, it seems never ending at the moment but I'm sure that will change. xxxx ... View more

Such brilliant news Penny am so pleased the chemo did do its job. Hope the migraine passes quickly so you can get on with recovering. X ... View more

Ooh also heard a great phrase on Facebook the other day - don't borrow tomorrow's sorrow - it's my new mantra. X ... View more

Oh god the dreaded UTI - horrible when it happens Penny I have had many over the years and ended up in hospital once so be careful and rest / look after yourself. Tax seems to take a long time to recover from, my toes are still numb 2 months on. Dodo really sorry you are joining me in the waiting room its a horrible place to be I feel like I have turned back time to the day of diagnosis and it's so frustrating to be here so near to ending treatment, life feels like its back on hold. I've tried over the last week or so to rationalise being here, if I get the all clear it will be a fantastic way to start my recovery knowing I've had a full scan and nothing nasty is lurking there, if there is something although this will be devastating then thank god I brought it up early and got it checked out. It's a massive weight to carry around and I'm sending you a big virtual hug and good vibes for a speedy scan and good results. Love the idea of a new year meet up - I'm in. Xxxx ... View more

Jo - what a nightmare having to tackle the M25 every morning - I find it hard enough squashed on the central line for 4 stops.   How is everyone - sorry I've not posted for a while, what with half term and radio every day the time seems to get away with me but I have been checking in regularly to see how everyones doing.   Penny your bull story made me chuckle I had such a brilliant image in my head! I agree that cows seem to have got more aggressive - we got blocked in by a herd over the summer - my city dwelling / uncountrified children were petrified! So glad the op went well and hotel NHS was good to you, also I can still vividly remember the satisfaction of my seroma being drained - the nurse had to use 3 bottles in total - I think she got over a pint all told, it was such a relief like a balloon being slowly let down. I think she said the hospital record was 900ml in one go!   I'm 20/25 rads down - one more week to go - so nearly at the top level of the car park, area is holding up well, quite red and slightly itchy but no sign of breakdown yet - fingers crossed it survives the last few days.   One bit of not so great news is that I'm back in the waiting room as having a CT scan done, I've had a niggling pain in my lower back / buttock for the last couple of weeks, I'm seeing an Osteopath which does seem to be helping but both him and my Onc want a scan to make sure its nothing sinister. Really frustrated to be back there so near to the end of treatment and of course I'm completely convinced I've got bone mets but only the scan will tell that news for sure and so I wait, haven't even got an scan date yet so could be a couple of weeks at least......Zuzy I know you had to have a scan at the end of treatment too - its a bloody nightmare isn't it how did you cope with the worry???   Moods on Tamoxifen - its hard to tell I'm quite tearfull at the moment but think that's worrying about the scan and I snapped at my OH on Sunday for a very trivial thing but apart from that I seem to be pretty good. I do feel that my usual positive self has left for a bit over the last week or so but put that down to Rads tiredness and general uncertainty as to what the future holds. Getting a bit sick of people telling me its all nearly over when it doesn't feel like that at all. I'm fairing quite well on the other SE's  - bit stiff first thing in the morning and at least one hot flush overnight but all quite manageable.   Finally are any of you going to the BCC Younger Womens forum in London in a couple of weeks - would be so amazing to finally meet some Moonbeams in person.   Love to you all - all you Moonbeams are never far from my thoughts.   Aly xx     ... View more

Welcome back Karen! And good luck with the rads to you and Dodo - I'm in for number 4/25 today - so far so good, only had one 1/2 hour delay so far. I'm slapping on the aqueous cream like its going out of fashion. Kids off school today due to teachers strike so going to take them out for lunch after I've been zapped this morning. Sun is shining so want to make the most of the day. Love to you all. Aly xx ... View more

Oh Penny this all sounds very frustrating and horrible to have more decisions to make.   Firstly on the tumour shrinkage - there have been a few ladies on the younger womens FB page who had very little shrinkage during chemo BUT when the lump has been removed the cancer within it has basically died - not sure if this is something you can see from the MRI or not until its taken out. It must be so disheartening to be told that the chemo wasnt as effective as it can be, but I seem to remember that you said early on that the tumour was growing at quite a rate and if its stopped it in its track and blasted away any other mischevous  cells then its got to have been worth it.   Onto the operation - I can only speak from my own personal experience which was an MX & ANC to my right breast as I had 2 lumps in opposite quadrants so they couldn't 'save' the breast. For me I was very glad to have the decision taken out of my hands but on reflection I would have gone for an MX whatever, I don't mourn my breast at all and most of the time forget its not there any more, I also am grateful that I have one less boob to worry about if that makes sense. I  intend to have some kind of reconstruction at some point but that will be in at least a year or so and I don't know for sure that I will. I found the operation very straightforward, I was only in for 1 night and sent home with 2 of my 4 drains still in, and was up and about very quickly, and back at work in a couple of weeks post op. I had my ANC at the same time but think its again pretty straight forward if they do find they need to go back in.   I hope this helps with the decision -I HATE decisions!!!   Aly xx     ... View more

Oh and meant to say good luck for the scans Zuzy, never fun being back in the waiting room but glad they are being thorough otherwise you'd worry  even more. Will be thinking of you. xxx ... View more

Hi all - feel like its been an age since I've posted -  been having a lovely couple of 'chemo free' weeks, its been such a relief to not have any hospital appointments for a while, and despite not working I've been managing to keep very busy.   Namaste - good luck with the next stage of chemo - we will all be thinking of you and look forward to another car park celebration when you're done - once a moonbeam always a moonbeam no matter how long it takes.   My thoughts are with Karen constantly so if your managing to log on to the site at all I'm thinking of you - you have had such a rough ride and I wish there was something we could do to help - but just to say you're constantly in my thoughts and I hope your out of hotel NHS and back on your feet again very soon.   Radiotherapy starts on Monday for me - 5 weeks which I have to say I'm not looking forward to but once its done its done and I can begin to put all of this behind me, although of course it never goes away does it??   I've been spending quite a lot of time at The Haven in London which offer free treatments for women with BC, so far I've had nutrition advise, accupuncture and a counselling session all of which have been of immense help - you get 10 free sessions in total but don't think I'll get there again until rads are over. I've also been going to a 'mindful meditation' session held there which I've really enjoyed. I wish I could find more time during the week to practise as I really do think it helps with stress and quietening the chatter in my head.   Of out for my work leaving drinks tomorrow and with friends for a mini post chemo celebration dinner on Saturday so starting to feel like life is getting back on track.   Anyway I'm sure I'll be back on next week with lots of Radiotherapy questions is anyone else having Rads at  the same time as me? I think a lot of you have already finished - Rachel you might still have a week to go? - enjoy the LGFB session they are fantastic.   Zuzy - have you started your new job now - hope its going well.   Oh and how's everyones hair doing - mine is coming back really quickly I've got a good covering  of fluff everywhere that I lost it so now have a very dodgy looking mullet as have the long hair at the back and fringe that didn't come out with the cold cap and then a number 2 at the sides and top where its grown back - think I will be braving an Annie Lennox style crop in the next couple of weeks but so wish I could bleach it blonde.   Lots of love to you all even though I haven't been posting- you are never far from my thoughts.   Aly xx   ... View more

YES!!! All Moonbeams in the car park well done one and all I'm so happy for everyone of you amazing ladies!!! Jo glad you're back home, and hope your being well looked after. I've managed to get a nice stinky cold facing avoided one for the last 5 months (unheard of) guess its the kids being back at school and the weather turning colder. Still temp is fine and I'm heading out tonight for a little celebratory drink with some of my neighbours in the local pub (will they think it strange if I order Pimms I wonder?) Went to The Haven in London today for a consultation I get 10 free sessions of whatever I fancy, counselling, nutrition, reflexology, acupuncture etc....really fantastic. I'll raise a glass to you all tonight, but expect to be tucked up in bed by 10pm! Rest well moonbeams. Aly xxxx ... View more

Good luck Jo and Penny will be thinking of you both xxxx ... View more

Good luck with the Pre-op Jo, I know no posts in 48 hours is unheard of. Had a busy couple of days and am now paying the price holed up in bed, the TAX tiredness has well and truly hit today. Ah well somehow with the autumn weather coming in fast a day under the duvet doesn't feel so bad and I have so many episodes of The Soprano's to get through!!! Hope everyone's doing ok and Anne you are starting to come through the worst. Aly xxxx ... View more

Morning all. Bra's......I was given 2 front opening ones by the hospital when I had my MX but don't know if this is only for MX and not lumpectomy? They are very comfy and my go to bras when I'm not feeling up to anything else. They are by Anita and I think they are called surgery bras. Then I have another couple of bras called Nastaja (again Anita MX bras) which I found on Amazon, really comfortable but back fastening. So will I not be able to wear a bra during rads??? This worries me as I only had MX on one side and am a 36 E/F on the other not even a wooly jumper will hide the difference and I definitely need some kind of 'support' can I wear a bra and my 'softie' perhaps??? I has my first rads scheduling appt on Friday very rushed as the Oncolgist was running over an hour late but managed to get all my questions in and have another appt before they start in case I missed anything. First time I felt a little cross with the care / time I've been given especially as I had to drag myself there as I was only 4 days post chemo. Anyway I'm have 5 weeks of rads (yikes!) no boosters and start in 4 weeks. Already had the Pre-assessment appt in for CT scan and marking which is a couple of weeks away so all systems go. Tamoxifen - I start this in 3 weeks also and like you Barbara am quite concerned about it, was looking forward to going back to some kind of 'normality' but not sure if I'm being too optimistic in thinking this, hate the thought of more SE's and weight gain 😞 Final TAX has been ok so far, I'm at the sandpaper mouth stage at the moment which makes me extremely grumpy (poor OH) but should clear by next weekend, but the body/bone aches havent been awful. Not looking forward to the nail loss though, Zuzy / Jo how do you know when their coming off?? Mine have the 'wood rings' from each round of chemo but nothing more sinister. Lashes and brows are truly gone but hair is on its way back - at the moment I'm sporting a what looks like a very dodgy 80's style mullet but it's hair so I don't care!!! Anyway enjoy the rest of the weekend ladies. Zuzy I really hope they sort out the sickness - id heard some people feel sick from Rads - they don't think it's that do they?? Maybe just that bloody word accumulation again??? Ann rest up only a few more days to get through and your done. Whose left to go Penny? Karen? We're all thinking of you and waiting in the car park with our engines revving for a speedy exit. Aly xxxx ... View more

Hi Jo - I have to say out of everything for me the surgery has been the easiest bit - this might be because it was at the beginning and so I was at my fittest but I had a radical MX with full ANC, I only stayed in for one night, for me the worst bit was the drains but once they were out (after 4 days) I was fine and up and about within the week - I even went to a concert a couple of weeks later. It wasn't nearly as painful as I feared too. Good luck with the surgeon appt - I hope it goes ok. xx ... View more