Hi everyone. I got an email alert to say there had been a post on the forum, so have swung by to check in ahead of my usual Dec/Jan visit. It's lovely that there are still some of us who pop back onto the forum. I know most have left the forum and moved on, but I always think of my fellow Crackers around this time.
Sorry it's been a tough year for you Sarah, but also glad to hear you've had and still have options going forward and that treatment so far has had positive results. The physical and mental strain you must have been under is such a burden to carry. Fingers crossed you'll catch a break and be back in remission next year, like you say. You deserve it.
My year has involved a second mastectomy (for symmetry) and I'm now completely flat, which I've gotten used to and don't miss the ladies at all. I'm still taking Anastrozole - 3 more years to go. The SE's have been worse than Tamoxifen, but still JUST about tolerable. I'm due another Dexa scan to check bone density as pre Anastrozole I had osteopenia. Half of me can't wait to finish the course and the other half just worries what will happen when I do. A blood test in summer flagged up raised liver enzymes and after several tests and a scan, plus a fair bit of worrying on my part, it was decided that it was linked to my diabetes and nothing sinister, although they also discovered a polyp on my gallbladder at the same time, which is being monitored now. My splenic artery aneurysm has remained pretty stable as has my BP and cholesterol. I still have a Buddha belly, which refuses to budge and I have some arthritis which is worse this time of year, but the best news of the year is I became a Grandma for the first time and it's wonderful!!
I'm checking in early this year, so I catch anyone who does, after new news last year for me...
Pleased to say I'm well although it's been a long year of active treatment again. In Jan a PET scan showed activity in an abdominal lymph node, so radiotherapy following breast recurrence was put on hold. Instead I did Vinorelbine chemotherapy - a much less awful experience than our various first line chemos.
My clever Onc got me referred for Steteotactic Ablative Body Radiotherapy, funded by an NHS commissioning study in the summer. It's a very high dose, delivered a few times to a very precise area. It reduced the size of the node by half, back to normal so is presumed effective.
That's put the breast radiotherapy back on the table, so I'm doing it now, nearly 7 years since original diagnosis, straight to stage 4!
So I'm a bit ground down, but otherwise well, no rumours showing on CT scans and hoping for a return to remission on Herceptin and Letrazole only next year.
Marie, I hope immunotherapy will be an option in future, but there's not enough progress for breast cancer yet. There are other treatments still available to me later, including Kadcyla and potentially more SABR if the circumstances are right.
I know I'm a bit of an anomaly in our group, having been diagnosed with liver and lung Mets from the start. I hope hearing my news helps. Sarah x
Hi Crackers, I'm late checking in this time round - I usually try to swing by near Christmas but was ill with two back to back viral infections in December and was coughing myself inside out for weeks.
So glad to see some familiar names still keeping up the annual tradition too
Sarah, I'm sorry you've been going through a rough time and I hope that the treatments you've had and any future ones that you may need will keep you stable for a very long time. New drugs seem to be coming along all the time, so finges crossed for you - keep up that positive attitude!
Maire and Cybele - I fully get the reasons behind your choice to ditch the hormone treatment, but I'm just too chicken to take that leap of faith myself and so I plod on. Have done 5 years of tamoxifen and 1 year of anastrazole with 4 more to go. The SE's have been pretty dire, but I feel it's been my crutch and to date I'm prepared to suffer the side effects as long as I can manage. Can't guarantee I'll complete the full 10 years, but I'll do my best.
Pammy, nice to hear from you on this thread. If you find a way to shift weight whilst taking these blessed hormone pills, let me know!!
Trixielady - I'm sorry I haven't replied sooner, but I generally only look in on this thread once a year. I had a very quick look at your profile and see you're having chemo and reconstruction. I hope everything goes well for you and am sure you'll find great support in the monthly chemo threads.
After 6 years being a uniboober, I decided to ask for another mastectomy for symmetry. I never wanted to have reconstruction and hated being lopsided so opted for the other breast removing and to go flat. My surgery was on the 4th Jan and it's been much easier this time round as there was no lymph node clearance and no worries about cancer or chemo. Now I need to work on my Buddha belly which is much more noticable with no baps to interrupt the view!!
Wishing everyone all the very best of health and happiness in 2019 xx
Good to hear from you, Pammy, and thank you for replying lasy year, too!
I just looked down the thread and saw that Shellebelle also posted last year, which i seem to have missed - sorry.
I know what you mean abou the years going by, Pammy - it's just astonishing to think this was all six years ago. I remember back then just desperately wanting my life back, which seemed impossible - but it happened.
The chemo still haunts my dreams, though, and I get flashbacks whenever I see a picture of anyone wearing a cold cap, or with an IV in their arm.. but we did it, and we're still here to tell the tale six years on.
Good for us!
Wishing you a Happy New Year and many more to come
I am not a cracker but a Marchie, although I followed the thread at the time. Cybele it is so good to hear that you are doing well. I am still on the letrozole and yes loosing weight is nigh on impossible although I do not suffer any other effects. I am likely to be on it for another 4 years.
i hope everyone has a happy New Year I can hardly believe it will be 2019 it seemed nigh on impossible in 2013.
Love and best wishes to you all Pammyxxx
it's great to hear from you - I think I was the only one who posted last year, so wasn't sure whether
to bother this year. I can see why people want to move on, but our shared experience in 2012/13 did make
a very special connection, and I'm very glad that at least one other person wants to keep up the tradition.
Sorry to hear about the recurrence, but great news that you've effectively kept it at bay for such a long time,
and that the recurrence is local. Fingers crossed it will stay that way! Also great news about your house - we also finished renovating our house this year, with a loft conversion, and are now determined never to move again. It's such a relief when it's all done and dusted.
My treatment news is that I stopped taking Letrozole this summer, after 5 years, although the oncologist
recommended that I take it for another 2 years - a decision I hope I won't come to regret.
But the effect of Letrozole on my quality of life was so severe that i got to the point where I just couldn't bear to take it any longer. The physical side effects - aching joints, fatigue, generally feelinga hundred years
old - gradually dissipated by about year 3, but the mental side effects - which may be summed up in the useful phrase I saw somewhere 'Letrozole rage' - just got worse and worse.
For the lost couple of years my mind was constantly filled with a cloud of anger just looking for something to land on, and it was horrible. And I was horrible. This led to a number of unfortunate incidents, and it got to the point where I just couldn'ttake being that person any more.
It was possible that these symptoms would have come on anyway with the menopause (which began with my first chemo session, after which my periods vanished for ever), but since I stopped taking Letrozole
in the summer, the constant seething rage has gone, which is a huge relief both for me and poor husband, who bears independent witnessto the fact that I am 'much less explosive'.
I am writing about all this in case there's anyone else out there who is enduring similar problems. I know Letrozole is an excellent cancer drug, but it really is nasty stuff. I might also add that I have lost 1st 4lbs since I stopped taking it. i have been going to the gym regularly and eating a very healthy diet for the whole of the last year, but I only really started to lose weightsince i stopped taking the Letrozole in June, and the difference is now striking.
I did spend some time studying the medical literature before i stopped taking it, as losing your safety blanket is a very big step. The consensus seems to be that in women with early stage cancers, the protective effect of taking Letrozole for the final 2 years is very small, and one that may well be outweighed by the problems caused by side effects. I still worry, obviously, but this did bring some comfort.
And now I feel like me again...
Sarah - all the best for 2019, and let's hope the doctors have lncoked it on the head again.
To the other Christmas Crackers, if you're still subscribed to the thread, Merry Christmas and a Healthy New Year!
Dropping in to wish everyone a very Happy Christmas and New Year. So glad to be at the 5 year milestone and still doing well, although did have a bit of a minor scare earlier in the year with a very small bump that grew on my chest (mastectomy side) and because it wasn't 'normal', albiet not cancerous, they whipped it off, so I have another mini scar to add to the rest.
I've now been prescribed Anastrazole for the next 5 years which I'm starting in the New Year once I've finished off my stock of Tamoxifen and can't say I'm looking forward to it, but will just have to see how it goes. Had a bone density scan and have been put on high strength vitamin D and calcium tablets, which hopefully will help with the effects of Anastrazole. Will have another bone scan in a couple of years if all goes to plan.
Both my girlst have flown the nest this last year, so it's pretty quiet at home - hubby and I are now semi retired and spending more time enjoying the simple things in life.
Fingers crossed for another 5 years of being cancer free. The doubt never leaves you, I know, but you've gotta live your life while you have it, so onwards and upwards.
All the very best eveyone xx
Great to hear from you Cybele, another year I was in the 2013 Marches but I followed your blog which lightened up the dark days. Great to hear you are doing well wishing you well for 2018.
Best Wishes Pamx
It seems to be that time again!
Here we are five years on, and I can hardly believe it. I'm still OK (touch wood), and extremely grateful and
happy still to be here. I see from a post I made back in February that I was having a difficult time then emotionally with the 'is my cancer coming back?' paranoia, but that seems to have faded away again.
I think this probably the first year when I've spent a lot more time worrying about other things in my life rather than about whether the cancer is about to come back - so I guess that's progress.
One cheering thing I have found this year is that the side effects of the Letrozole seem to have gone - I got a lot of aching bones and mood swings at the beginning, but that's disappeared.
But it's all become very vivid again for me now because a friend of mine is now also going through treatment for breast cancer.
I hope you are all continuing to be well, and wish you a very merry Christmas and a happy New Year.
Much love to you all xxx
I've been trying for three weeks to get on here but the Forum woudn't accept my user name or password and athough I made 4 requests for a new password and was told an email had been sent to me I never got one. So the long and the short of it I've started a new account under a new email addy and I'm now "Collies" instead of Border Collies.
Cybele I can understand your anxiety and fear even though I have just had an ultrasound scan, and one of the new 3D mammograms read by two separate radiologists and am lucky enough to be still NED. I find that on a daily basis I can live my life as before bc and not even think about it but when it comes to big things like booking things months in advance and for instance when my husband wanted to buy a new motorhome for my dog shows I wouldn't let him do it until I'd had my scan and mammo for that year. I always feel not "if it comes back" but "when it comes back" and my tumour was Triple Negative so not so many options for treatment.
I feel well in myself and live life to the full but that fear is always there - nibbling away at the back of my mind. Anxiety itself is a strange thing. My anxiety is always worse when I'm alone with time to think but I can be in a real black hole and the doorbell will ring and my brother or friends have popped round unexpectedly and I become a different person - the person who never had cancer - the person who doesn't
have to llive in fear of it's return. I am carefree but as soon as I am alone again all the old fears and anxieties rise to the surface.
That said I'm more fortunate than some. I was devastated to hear of the loss of QD. She seemed such a vital person - life is so unfair. Lisalouw so happy to hear that you have finished your treatment now and I really hope that life will get better for you now. The same for you Spo. It takes courage to deal with this awful disease the way you have.
Maire, so sorry to hear about your mother. What a horrible way to start the year. I hope all went well for your annual checkup.
You know I so rarely come on this Forum now and yet at this time of the year I'm drawn to it like a bee to honey, with a real need to know how everyone is. I will never forget the comfort the forum and the Crackers in particular gave me during 2012/13. Good luck to you all.
Hello again, Crackers.
Just to say I have just posted on one of the other parts of the forum about the mental difficulties I seem to be experiencing, despite being 4 1/2 years on, NED and having just had a clear mammogram.
I'd welcome anyone else's thoughts on this because I don't really know how to deal with it, except perhaps by seeing a therapist. It's always hard around our starting chemo anniversary and mammogram time, but this year I just can't seem to get a grip..
Ooooh, I'm a bit late this year but I've made it onto the forum just in time to wish everyone a very Merry Christmas and a Happy and Healthy New Year for 2017.
I try not to look back too often, but at this time of year I allow myself to remember all that we went through in 2012/13, the people who didn't make it this far and those still fighting the battle.
I'm ok myself, still taking Tamoxifen and putting up with the side effects. They're rubbish, but I dare not take it so I just have a whinge every so often and then get on with it.
All the best Crackers!
Hello Crackers, and Happy Christmas 2016!
I can't believe it's 4 years since we started chemo - it seems unreal that it was so long ago, especially when the memories are so very, very vivid..
Sarah - so pleased to hear that you're doing well on the maintenance regime xx
Liselouw - I know it's been very tough for you- HUGE HUG xx
I'm fine - touch wood - though still hating the Letrozole. But very grateful just to be here at all, of course.
We had just moved into our new house this time last year, and we've very much been enjoying living in such a beautiful location, just round the corner from Ham Lands (a big nature reserve), and the river, and in walking distance of Richmond Park. The bird life here is amazing, and our bird feeders are frequently covered in crowds of parakeets, which are so lovely and colourful; I know they frighten off the smaller birds, but I try to put enough food out so that nothing with wings in the vicinity ever goes hungry.
Not to mention the squirrels,, who are all astonishingly adept at feeding from supposedly squirrel-proof bird feeders. Our back garden often looks like a Disney movie, with so many birds and squirrels, and I LOVE THEM ALL.
Still so very grateful for every day of good health..
Here's wishing you all a Happy Christmas, and an NED New Year!
I intended to come on here before Christmas but having just got another puppy life was a bit hectic to say the least. I wanted to wish all the Crackers a Happy Christmas, but I guess that I'd now better change that to a Happy and Healthy New Year. Lisalouw I'm so so sorry to hear that you are having to endure the whole procedure again. My stomach churns at the thought of it and of course ... there for the grace of God goes any one of us. However well we are doing there is that fear tucked away at the back of our minds "will it come back?" You say your chemo is finished but I'm wishing you all that I can for your op on 20th January. I really hope all goes well and that you can have peace of mind. Lovely to hear from Cybele and Maire as well and hope that the inactivity on the Thread means that most of us are doing ok. My life has returned to normal and it all seems like a bad dream but now I have my mammogram and ultrasound scan to look forward early in February. I always dread that checkup and always fear the worst. This thread got me through some awful days back in 2012/13 and I will always be grateful for the support of of all you lovely ladies. Good luck to you all.
was going to log on to do a Christmas post, having been remembering starting chemo back in December 2012, but shellebelle and lisalouw have beaten me to it!
lisalouw - so very sorry to hear that you've had to endure chemo again. I know life isn't fair, but IT'S SO B****Y UNFAIR!!! Once is more than bad enough, twice is... there are no words, really, but I'm thinking of you and sending you a HUGE hug. When I was ill a Quaker friend told me she was 'holding me in the light', and I will try to do that for you. Let's hope the docs will manage to knock it on the head this time.
shellebelle - so glad that you're doing well, and have resurrected the thread - I think of you all often, and wonder how you're doing. We had some friends over the other day and I was telling them about the Crackers, and how much it had helped to have chemo buddies with whom to get through the experience. It is something for which I will always be grateful.
All is well here, so far - touch wood. I am trying to enjoy every day of health as much as possible, knowing that the cancer could come back any time. I would never say I am grateful for having had cancer - I hated every minute of it and I still think the treatment is barbaric - but I will never take good health for granted again.
And, of course, taking the wretched Letrozole every day is a constant reminder of still being in the hands of the doctors and held ransom by the disease. I have to say, though, that I have found the Letrozole much, much easier to tolerate than Tamoxifen, which I had to come off because it turned me into a mad witch. There are still mood swings, but not on the epic scale that happened with Tamoxifen, and the only other real side effect for me is aching bones in the mornings.
Wishing you all good health in 2016 and for many years to come xxx
Well, I may be posting entirely for myself to read as it seems this thread has just about been resigned to the archives, which is a little sad, but must mean everyone is doing so well that they no longer feel the need to revisit and that's no bad thing really.
However, just in case anyone does pop by, I will wish you a Very Happy & Healthy New Year for 2016. I always think of the Crackers at this time of year and those who are no longer with us.
Not much has changed for me over the last 12 months. I'm still popping my Tamoxifen pills and putting up with the aches, pains, thinning hair, dry skin, flaky nails, flushes and 'hit and miss' memory that go along with it. My next Oncology appointment is in May and perhaps, if I'm deemend to be post menopausal by then, I may be put onto an AI instead of Tamoxifen. I don't think that's anything to look forward to .....but hey ho.
All the best.
Wow it took me ages to find our thread - which I suppose is a good thing, as it means we're all getting on with our lives, but I miss the Crackers! I just logged in to do the password change they required, so it seemed like a good time to say hello again.
I'm well (touch wood) and enjoying life - recently taken up cycling again after many years, because we're now living near to the Thames towpath in north Kingston, so I can ride for miles on the towpath, or in Richmond Park and Bushy Park, without having to go on the road, which is wonderful.
Still struggling with the side effects of Letrozole, mainly aching bones and tiredness, but now the cycling is making me aching and tired in a rather more productive way!
Hope you're all well, too.
Maire - So sorry to hear about your sister having a recurrence after such a long time. I do hope all goes well for her. I can also appreciate how much this has affected you and your anxieties if you have gone so far as to consider a mastectomy. Nobody makes those decisions lightly.
If you cannot get the NHS to agree to an ultrasound, have you considered having one done privately? I have just Googled and it looks as if, depending on which hospital you go to, a two breast ultrasound costs between £210. - £410. If you could afford this it would probably give you so much peace of mind. Having said that, I think you should be able to get it on the NHS so must be worth having a go. It's not nice hearing that you are so worried still but really happy for you at the result of your mammogram.
Yes, got my results very promptly and all ok but I just have no faith in them. The doctor said that ultrasound wasn't useful unless there was a genuine area of concern. I think I'm going to try the broken record technique and keep asking for an ultrasound. I am even toying with the idea of a double mastectomy as my sister has now had a recurrance after 16 years! I'd rather not have the constant worry and stress.
Anyway glad to hear you got all clear BC!
Hi Maire - Seems ages since we spoke.
Like you my tumour didn't show up on the mammogram but was clearly visible on the ultrasound scan. I was told that from now on I would have to have the ultrasound at the same time as the mammogram and this was done in January 2014 and 2015 and for the foreseeable future. My surgeon said that she didn't feel we could rely on a mammogram result to prove there was no recurrence. I should mention that my treatment has been through BUPA throughout so maybe that is the reason.
Have you got your mammo result yet? It's a horrible time of year isn't it when we have these check ups. I had convinced myself that after the appointment I'd be staring the dreaded chemo in the face again so it was a wonderful feeling to know that I was still ok. I was lucky that I had the mammo and the ultra sound scan plus two visits with the surgeon all in 30 minutes with the result given there and then so worry was over.
If you haven't got your result I really hope all is well. Let us know.
Great news. I had my second annual mammogram last week. I did ask about ultrasound but was told it wasn't really an option. As my tumour never showed up on mammogram I would have been more reassured by an additional ultrasound. Why did they give you yours BC?
After a week of anxiety, panic attacks and sleepless nights I today saw my breast surgeon and had a mammogram and ultrasound scan for my second annual check up since my lumpectomy. Got immediate result of mammo and scan and was told that there was no evidence of disease and so I was clear..
I cannot describe the relief. Even though I had no symptoms of a recurrence I had more of less convinced myself that the scan would detect something horrible under the skin ... I'm such a pessimist and a worrier.
So I'm about to have a "big drink" both in the way of celebrating and to help ensure a better night's sleep, though that might not be so much of a problem tonight.
Good luck to anyone else who is about to undergo their annual check up ... everyone must go through the same anxieties that I did. Also I hope all the crackers are feeling well and getting themselves back into their lives. Thinking of you all.
Merry Christmas to all the crackers of 2012. It had been a rocky road and I spy some bumps ahead but here's to us all and especially QD and those with recurrences or spread.
I will raise a glass or 5 to you all.
Cressida could you let me know the whereabouts of qd's funeral. I won't make it but would like to send a card if possible.
I am shocked and stunned to read of the untimely passing of one of the Christmas Crackers of 2012. QD was an inspiration to us all I think with her attitude to life and BC in particular. I don't come on here often and was unaware of her new diagnosis. My heart goes out to her family - so hard to lose someone so close and even worse at Christmas. Rest in pease QD.
Glad to hear that others of the group are getting on with their lives as I am, though always mindful that things can change at any moment so am grateful for every day. Bless you all - may you stay healthy.
If anyone wants details of QD's funeral on 6th Jan in Birmingham, please pm me. We always welcomed people into this club so we should also say goodbye. I know you prob can't come, but please make a note of the date and raise a glass for our friend, xxx
Thanks for you thoughts Lucy.
And hello to a few old crackers. I am sure QD would be happy to get us talking again.
The first time I met her she dragged me all over Birmingham searching for coffee with soy milk. I was in the middle of Oxycontin withdrawal and my joints were agony. As soon as she realised she took to carrying my bag for me. She then made me laugh till I cried by telling me all about her exploding mingy boob (it exploded over her teenage son). Several non dairy coffees later (and a few cakes) we were friends.
Even when stuck in hospital knowing that the chemo was not working she was teaching the doctors how to speak properly (she is a voice coach) and joining me in a ridiculous text conversation regarding me having Johnny Depp in my basement (she loves Johnny Depp). No good asking to visit him now - I released him in her honour.
I always think of you lot at this time of year - you know I came here because I was back in chemo and really didn't think I could do it again. Turned out I couldn't get all the way through, but I would not have made half way without the fabulous support here.
I can report that I am still NED. I am also back at work 3 days a week. I am very slowly getting less knackered and less in pain. Who knows how it will turn out but I suggest living like QD - make a joke out of the worst things and direct your own production of Annie. I believe that Maire already has the wig.
Love to all,
So, so sorry to hear about QD. She had such a lively spirit and added greatly to the gaiety of the Christmas Crackers.
Cressida, that was a lovely tribute to her xx
As the second anniversary of starting chemo has approached, I keep remembering - with a shudder - that awful Chemo Christmas of 2012, and the months of torture that followed. It was all so horrible, but made much more bearable by the friendship and support here on the Christmas Crackers thread. You were all fabulous - thank you!
I'm fine now - TOUCH WOOD - apart from the horrible side effects of Letrozole, which makes my bones ache, and generally makes me feel about 90. It keeps coming into my head that these oestrogen-killing drugs are the EXACT OPPOSITE of HRT, and I get quite cross when I read about women saying how much better HRT makes them feel, and thinking that I am taking a drug designed to have exactly the opposite effect. I was on Tamoxifen at first, but had to switch, as it basically turned me into a psychotic witch. And that was on a good day.
I'm very mindful that the cancer may come back at any time, and living my life accordingly.
Love to you all xxx
I am gutted to be here with this news, but Queen Drama died on Friday. She got her secondary diagnosis just a couple of months ago and didn't tolerate the chemo very well and died in the hospice after a nasty infection.
I was lucky enough to meet her and get to call her my friend. She was not just cancer, She was a wife and a mum to two teenagers. I won't put their names, as I don't have permission, but she was loved by her large family and many friends. She was an actor and a respected drama teacher at a girls school where she managed to direct a production of Annie between primary treatment and secondary diagnosis. When she want back to school she also took on the role of being responsible for vulnerable pupils, which she loved. I wish we had her longer so I knew more about her, because I want to make her real for anyone not lucky enough to meet her.
We will always remember having Christmas in July in Milton Keynes, where she bought actual crackers and decorated the restaurant around our table. It seems even more cruel for her to go at Christmas.
Please join me in a standing ovation for the unique Queen Drama, never forgotten, xxxx
Good to hear from the old 2012 crackers. I'm still in limbo land wondering why I have so many ailments despite normal bloods and scans. Think doctors are sick of the sight of me and have me down as a neurotic.
Glad to hear you're doing so well depite your secondary diagnosis SPO!
This time 2 years ago we were all contemplating the start of chemo and we got through it. Enjoy the festivities.