I had the same attitude as you, "Don't say it" just in case I was tempting fate! I finally did say it, but with caution, and ... well ... no more needs to be said. But wow, 15 years is amazing. I remember my consultant, last time I saw him, said, for the first time ever, as he was a very cautious man, "I'm very happy with you." Those words meant the world to me.
Take care Swissmiss and let's mark those special dates again soon xxx
Yes, here’s hoping for many more too. I’ve said it before, it was posts like the one you started Ruby which helped me through the dark days.
15 years for me. I feel like I’m tempting fate when I say this, however, if it helps anyone on here, then it’s a risk worth taking.
Best wishes to everyone 😘
So it is coming up for our year anniversary of this thread. How wonderful. I wouldn't have noticed or thought about it had you not mentioned it.
Happy 1st year anniversary to this post and to many many more to come!
I'm now 14 years out!
Love to you all
Hi HelenW, take care coming up to your first anniversary. Quite a moment.
Hi to everyone on this thread. I think we are approaching a thread anniversary too! I hope you are all keeping well.
Much Love to you all 😘
I haven't been on here for a while, so my apologies for not responding to your message from a while back.
Hope all is good with you.
Hope you are feeling better.
Did you make any changes in regards to getting another cat or a dog? We actually rescued a little 5-year-old in July, so now we have two! Just love it. So therapeutic.
Not going to make this a long one now. Big hugs
@HelenW - Congratulations to you dear lady. Long may it continue for you and you now now stay well.
The same looong well wishes go to everyone else coming on here. Delly x❤️x
Thanks @Ruby1 and others who have responded to this thread,
I am just coming up to my first anniversary this winter of my HER2+ ER+ Grade 3 Stage 2 diagnosis.
Very best wishes to you all
Hi again Ruby and everyone
My apologies in advance for this rather looong post. Please forgive me, got carried on a mentally connecting "wave" with you all and "IT" being this bleepin disease!
I understand what you're saying ref "I feel guilty almost being fast tracked for something that I don't think warrants it". BUT . . . secondaries DO occur, happen. It can be years later. So I can't agree with you on the not warranting it, so please don't ever feel "guilty". We do have to bear or keep that in mind, just as our conscientious GP is and does, because he/she knows the possibility of it happening. After all, it is a life threatening disease, that, like ANY cancer, can be sooo unpredictable in it's nature. I do not live in FEAR of it. But I DO however, have a realistic "awareness" of such possibilities, and am therefore aware and vigilant to any bodily problems or changes, but not to the point of paranoia.
I recently went to my docs due to sudden sharp pains both sides, below my ears, just at the angle of my jaw, that have been getting sharper recently. Seems to be whenever I eat certain things. Like when you eat a lemon and it zaps your salivary glands, makes you suck your cheeks in. But this is a searing pain. I'm there sat in front of the doc, thinking I may just have blocked salivary ducts, but he's there, in this case, being somewhat "overly" conscientious, feeling ALL my neck area and saying "I can't feel anything that feels like a "tumour""!!! Aaaargh what? Flippin 'eck - Told him "I" wasn't thinking tumour!! I have Sjorgrens Syndrome (don't know why they call something a "syndrome") - an auto immune disease that affects the moisture producing glands causing extremely dry eyes (practically "live" on eye drops 5-6 x a day), but also dry mouth and nose. It can cause "blockage" in the sub-mandibular salivary glands or ducts. I'm waiting on an ultrasound for it. But I am NOT knocking his overly conscientiousness - am always very thankful that he IS.
I loved hearing of how your life has changed, especially from 2011, with all your additions, from husband, kids and puppy. ALL Fandabidozee, darlin'. I'm so pleased to hear all that.
On the puppy point - I'm so with you on importance of animals and what a massive difference they can make. Most definitely therapeutic. My cat helped ME through 10 years of so much nasty horrible brown stuff (s*** in other words), from the death of all my 3 immediate family, both my boobs a year apart, loss of profession, business, home, income, lifestyle - she was such an incredible solace and comfort. Probably more so for me, as no partner or kids, so guess SHE was my BABY. Such a beautiful creature. I miss her soo much of the last 4 yrs. Frustratingly, I don't feel I can risk having another puss in this house, as it's on a horrendously busy main road. She was elderly when I moved here, and past jumping up high fences and gates, so was fine in the enclosed back garden. But I was paranoid about her getting out the front door, getting "skittish" or "spooked" by the traffic and running into it, as opposed to away from it. I'd never have forgiven myself if she'd been run over, or if I had another and it was. She used to wake me up and come and have a 20 min snuggle under the duvet, before she made her real snuggle reason of "cupboard love" hunger known 😻 - Yeh, such a fickle creature! Mmm, I didn't mind really 😋. I'd probably be the same if I were a cat! 😄
Lots of lurrrrv to you ALL, Dellywellydingdong xxX❤️Xxx
You've explained it perfectly and I am in complete agreement with you about how having had breast cancer makes you feel. The longer the time goes by, the less you actually think about it and the less you feel there's a weight hanging over you. It's just not a weight anymore, just in the back of your mind. The good thing about it is that when you do go to the doctor for anything, they take you really seriously and don't take any chances. I almost feel like saying to them, "Don't worry, I'm not overly worried about this or that" because I feel guilty almost being fast tracked for something that I don't think warrants it, but that the doctor won't take any chances with.
Thinking of you the lovely people going through this as speak.
Big hugs to you Delly and to all
Hi Ruby & Delly,
thank you for your lovely replies. You’re right I know that I don’t think it will ever leave me but I’m glad things will eventually be easier.
im so glad that your lives have moved on so positively, that’s really wonderful to hear. I had the mammogram but still waiting on my result which I’m taking as good news. I think I would’ve heard sooner if it was anything else.
thank you again xx
Hi Lucy 51
Like Ruby, I'm a 13 and 14 yearerrrr. Both Mastectomies and full ANC's just a year apart. Yep, Yearly checks always or often tend to "throw everything up" again to the front of your mind, all the trauma and memories. But I did find it lessened with each year. Year 5, and being "signed off" as being "clear" was a major biggie change to my whole thoughts and outlook. From then on, it migrated more and more to the back of my mind. Was NO LONGER my daily "waking" thought. Even since being a Forum member, 2014, from a support point of view, it really doesn't bother me any more. I said in a post earlier on this thread, I DO remain vigilant though, with any occasional bodily complaint. My GP is very conscientious, keeps my previous BC history in mind, and will send me off for checks pretty pronto, which helps put/keep my mind at ease.
It's very difficult to think early on, that you will EVER feel more comfortable about it all, because you still feel "RAW" from it for quite a while after. AND . . .that you're body's let you down! THAT also takes time to begin and learn to "trust" it again.
Lots of love to EVERYONE, Delly. xxX❤️Xxx
Sorry that I've only just seen your post. My absolute pleasure to you regarding my post. How did your mammogram go? I hope all is okay.
I'm so sorry to hear that your operation didn't go to plan. When I say I think about it all everyday, more often than not, it's just a fleeting thought, but not all-consuming like it used to be. It just was such a majorly traumatic event in my life that I don't think it'll ever leave me. It's just a part of my life now. I also had such extensive treatment and surgery that I have reminders of that every day that don't go away. That's what I meant by that. Hope that explains more.
I can't say exactly when I started feeling more at peace, but i can definitely say that when I got married in 2011 (coming up for ten years now) the change in my life of becoming a wife and mum to a 10-year old boy, and then getting a puppy in 2014, made such a difference. The dog is amazing. He's the love of my life, as well as my other two boys, but he takes my mind off a lot and I find him so therapeutic. It's amazing what a little creature can bring to your life.
I hope that helps xx
Great to hear you're so far down the line too.
I am also (as of this month) prescribed calcium and Vitamin D. I only recently had a scan due to arthritis and it showed I have osteopenia, so now I'm on a prescription to prevent full-blown osteoporosis.
I actually have just been discharged from the hospital back into the care of my GP. Woopee! It's strange, but I honestly can't say I'll miss those appointments.
Take care x
Great to hear your news, Janie123, regarding how well you responded to treatment. I'm sure that really helps others to know how well you've done.
Hope all goes well over the next few months for you.
Really good to hear from you. I hope my story helps. I'm actually coming up for 14 years now and have just been discharged back to my GP from the hospital! That's great news for me. Was a bit scary to feel I've been let of the reigns, but great feeling as well. Take care.
Hi, nice to hear from someone 13 years down the line and I thought I’d pop on to say I’m 9 years since diagnosis and feeling well. In 2012 I had a mastectomy left side, with back flap reconstruction. No lymph nodes affected. ER +, herceptin neg. I also had the Oncotype DX test and a decision was taken not to offer chemo or rads. I took Tamoxifen for 4 years followed by Letrozole for 5 years. As of this week, I have been advised my Oncologist to come off Letrozole and apart from a calcium / vitamin D supplement that’s it!! I’m feeling positive and wanted to send positive vibes your way. The worry everyone has, particularly on anniversary dates and just before appointments doesn’t go away but gets easier in time.
Hi Westie Ruth,
I was triple positive and was diagnosed in June 2018. I thought Her 2 positive was a concern but actually the oncologist said not. Due to the amazing combination of Herceptin and Perjeta it has become much easier to treat. After three chemo cycles ( which I had before my mastectomy), my lump had shrunk to a third of the size, and by the end of the six cycles it had disappeared! My breast cancer nurse said this combination of drugs is a ' game changer', so I hope this reassures you.
I will be having my third post - treatment mammogram in a few months. First two were clear and I have had a reconstruction and I am moving on feeling happy and healthy.
Best of luck to you. You can do this!
Love Jane xxx
Hi Ruby 1
I’ve only just come across your post and would like to thank you for sharing how you’re doing now. I’m just coming up to 2 years post diagnosis and have my annual mammogram next week. To say post treatment I haven’t coped is an understatement. I only had a mastectomy but my recon didn’t go to plan and I’m on the waiting list for a tug flap. What I found interesting is that you said you still think about it everyday. I’m exactly the same and have tried hard to put it out of my mind but it’s impossible. I wondered how long it was that you felt more at peace with what you had been through?
Thank you again for posting x
Im er positive her2 strong diagnosed in december 20 im terrified so nice to here your story
Yes, private is great for things not cancer related and you can generally get to see somebody pretty quickly. But it's not a one-stop shop with breast cancer, like they have on the NHS, where the services they provide are phenomenal. A friend of mine had private and she said she just didn't get the support that she needed, and it sounded like on the NHS you get far more, plus when you're having chemo, you're in a shared lounge usually and can chat with others at the same time - I know I certainly did.
NYE to you
Hi again Ruby
Yeh, it seems "private" is great for certain things, but can sometimes fall down, or be lacking in others. They don't always have the same resources, equipment, emergency measures etc. as the NHS. Certainly not for BC and other cancers, it would seem. Don't think you get the benefit of Breast Care Nurses either, do you?
Lovely to hear from you. Such a shame you didn't know about this forum back then, but you're here now and providing lovely support for others.
You are completely right about the NHS, they were second to none. I even had private health care but my consultant told me to remain on the NHS as I'd get the same, if not better treatment. He was completely right. I was seen whenever i needed to be. Sent for scans, as required, and then would come back to get the results straight away, literally. I've heard people say they feel alone when they have private treatment, and I certainly was never alone. They way they just deal with you is incredible.
I'm so pleased to hear that your scare turned out not to be anything sinister. What a relief.
Anyway a very very happy and healthy new year.
I know all about the 'cancerversary' and the fear. I've been there over and over again, but not so much now and not as intense at all. Thanks so much for your lovely wishes. A very happy and healthy new year to you and to many many many more updates in the future xxx
So pleased I could be there for you and, like you, this forum was a godsend when I was going through it.
Happy new year to you and may it be only filled with health and happiness xxx
Ruby1 - Forgive me, I got carried away in saying hi again to Evie, that I neglected to say what a great post and thread from you. Thank You for it
Had I known of this wonderful forum back then, I don't doubt I'd have joined you on the "Terrified" thread, each of my own boob cancers having been 2006 and 2007 at 47yrs.
Wow Girl, did you go through it!!! 30 is no age. It is testament not only to our excellent NHS care, but to your own personal STRENGTH and TENACITY. A wonderful positive example to give HOPE to all others beginning or who are part way through treatments.
And . . . a happily ever after ending too. You found your "soulmate". How blummin marvellous. I'm sooo pleased for you.
Jhaslett - Hi darlin. Yeh, anniversaries!! Throw it all up for you again. I so get that - and only natural and normal to. It wasn't until my 5th year anniversary check, and all clear, that I just stopped worrying any more. Hopefully for you too. Barely think about it any more. But, and I recently posted this elsewhere on another thread, ALWAYS be vigilant if and when anything crops up body wise, that you feel is out of the ordinary. Whether that's tummy probs, or aches and pains. Don't sit getting worried and fearing the worst (Paranoid). Get it checked out immediately, hence me say stay "vigilant", but NOT paranoid. I would never have expected to have another small tumour in the OTHER breast only a year later. Another different PRIMARY too, so not due to SPREAD from the previous year's tmour in the other boob. But as soon as I pointed it out at my yearly check, it was dealt with immediately, preventing it becoming worse. Though unfortunately meant another mastectomy and again full ANC.
I recently had to have an gastroscopy for tummy probs - thought it could possibly be secondary BC. But alerted the medics to my previous BC, so it was checked out immediately, so not much time spent worrying. Turned out to be just a hiatus hernia. Phew!!
Lots of love to everyone, Dellywelly xxxxxxx
Hi Ruby1, thank you so much for your post- it has helped me so much. I am 3 years out of diagnosis and as it comes close to my ‘cancerversary’ i get gripped by ‘the fear’ - your post has helped. I am so glad to hear you are happy and really nice you have found your soul mate, looking forward to the update in another 13years xxx
Evie - Hellooo back darlin' and "Thanks" too for your thanks. Good to see and hear you're doing well.
I've had a hiatus from posting most of the last year, with my mental health probs. Keep coming across your recent posts - all good much needed support, advice and words of wisdom from your own experience. Impressed you've been awarded a community champion star, and not in the least surprised by it. Well deserved, sweetheart.
Think our initial communications were mostly about how to cope afterwards, you having only been recent at that time.
Keep up the good work. Lots of love to everyone here xxxxxxxx
Hi Delly - good to hear from you, hope you are doing ok? You have supported so many people on this forum, I remember your name from when I first joined the forum and I know we’ve chatted over the years. It’s always so helpful to hear from people who were diagnosed a long time ago. Big hugs to you, Evie xx
Another "oldie" here. Mastectomies and full ANC's, 2006 and 2007. But didn't know ANYthing about this wonderful Forum then, Sooo wished I had.
I started using "Cancer Buddies" 2013. Oddly, had picked their card up at the breast unit and saved. But never anything about the BCC Forum? Don't know why none of the nurses mentioned it? Anyway, Buddies folded, and then discovered the BCC forum 2014, to find other fantastically supportive women. I was going through the beginnings of a double delayed recon at the time.
But I've always been conscious of wanting to give something back, and have stayed around since to support to other women going through the trauma of BC. It has also often been a godsend, in distracting me from quite serious mental probs I have at times, so a form of support to me in return.
Treatments tend to be so different these days than back then, but that initial shock of diagnosis will never change, so always room for support there.
Good to see, read and hear from you all.
Lotsa love, Delly xxxxxxx
Thank you both,
I do understand what you mean. I honestly don't know what I would have done without this forum. No-one quite understands how it feels, and it is SO reassuring to see how many of us survive and thrive!
Thank you again. It really means so much.
Love Jane xxx
Swissmiss / Janie123
Swissmiss, I'm so pleased you jumped on the bandwagon! Definitely really lovely to connect again and know how you're doing. I hope you're feeling better about the other things that brought you here on the same day as me xxx
Janie123, yes I can definitely tell you that the worry does start to subside over time, and becomes less all-consuming. It's taken a long time to get to that stage, but it's like your brain becomes programmed to get used to it, and it's like a new normal. Although the worry doesn't completely go away, it really does subside and you just don't think about it as much. I definitely don't wake up thinking, "Oh my gosh" every day, but like when I shower, I am reminded, because things are so different. But it just doesn't feel like it's hanging over your head, the longer ago it is. I hope you understand what I'm trying to say. Sometimes it's hard to put it into words, when trying to reassure somebody else who is going through something but is in a different position to you. xxx
Hi Janie 123,
Excellent news about your two-and-a-half years. Always a good feeling when you start thinking about how far you've come and how well you've done, and always helps reading posts from others who are further down the line.
I'm hope and I'm sure plenty of other ladies read this thread and that it helps them too.
Best wishes to you too
Thank you to Swissmiss and Ruby1,
I am two and a half years post diagnosis. I am usually very positive, but occasionally get worried that it may recur. To see posts from ' old timers' is SO reassuring, and it makes me feel that if you have made it, so will I!
Thank you for your generosity in taking the time to post on here, and give us all hope.
Thank you, so pleased I was able to help in some small way.
Have enjoyed various Vegan meals since my cancerversary from the ‘Keep it Vegan’ recipe book by Aime Carlin, recommended to me as a good introduction to plant-based cooking.
This (Covid) year, more than ever before, has made me appreciate nature, plants, animals, Science and lifestyle, guessing this may well be the case for many too, whether dealing with a serious illness or not.
I know exactly how you feel about time of year making such a difference, it absolutely does, so much harder in the cold winter months and yes, dark short days but I hope you and your friend enjoy your festive Winter Wander, whether a bracing walk or a gentle meander, so good for the soul, a bit of a ‘Liker Hiker’ myself so I think you have made a great choice, though limited, as you say, due to restrictions.
Thank you for your best wishes to my Family, I send the same right back to you. You take care now Evie, much Love 😘
Hi Swissmiss - thank you so much for such a wise and thoughtful reply, it helps a huge amount.
I am now intrigued by your vegan dish, what a great idea. I do agree with you that once the anniversary has passed things get easier again - mine coincides with dark short days so that never helps. I am meeting that same friend again this year, only for a walk this time because of the rules, but you are right that she is very special to help and be on my wavelength. I like your suggestion to always have something to look forward to, even with the virus we can still make plans/do things.
I really appreciate you taking the time to send those thoughts. I hope you and your 14 year old baby are both doing really well. Very best wishes to you, Evie 😘😘
Well, this forum, and the Charity itself, is close to my heart. Many posters on the forum got me through some dark days, most of whom will have had no idea just how much they were ‘quietly’ supporting me with their posts, their knowledge, their experience. It is good to hear that you have experienced the same level of support.
I also learned a lot from posters who had a poor dx/outcome too, this forum comes with a lot of sadness but with grace and strength, at a desperate time in their lives, they were still prepared to engage, share and support others, quite some feat and how generous of heart, mind and spirit to spare their precious time. There are some names no longer here but I haven’t forgotten them or their user names.
As for anniversaries Evie-S, such an individual choice, I tend to deal with them quietly and privately, though very much aware as there is a build-up to them but once they have passed, I tend to feel so much better. I think your approach sounds good to me, own the moment but you also seem to have a super friend there, very in tune with you, hold onto that friend.
This year however, though I’m not Vegan, I made my first Vegan meal in honour of the plant which helped to get me this far, the Yew Tree (Taxus) as I had Docetaxel (and the Fec combo as Grade 3). It seemed like a good way to celebrate my 14th cancerversary at the time.
When looking to the future back then, if I dared, spontaneity took over from making plans but, over time, I can face making plans once again and now try to ALWAYS have ‘something to look forward to’ (borrowed with pride from Supervet), whether big or small, a film, a show, holiday etc, don’t put things off. One thing I have learned the most though is that simple pleasures are often the best.
Hope some of this helps Evie-S 😘
Like buses, two arrive at the same time 🙃🙂
May be more ‘old timers’ will come aboard 😘
Swissmiss and Ruby1 - thank you both for those lovely replies and for offering to chat more anytime, I really appreciate that.
Swissmiss - please don’t ever think that you “should” do more on here. You have stayed in touch with the charity and have responded to messages and came back with Ruby1 to give hope to others. Everyone has their own reasons for staying on here or leaving, some want to move on and not be reminded of it every minute, others want more support - it is so personal. I had so much support from the forum when I was going through treatment that I decided to stay around for a while to see if I could help others, particularly those newly diagnosed. When you both kindly offered to chat anytime I realised just what a priceless and generous offer that was - I also still need help myself some days, but haven’t asked recently.
Can I ask you both whether the anniversaries of your diagnosis fade over time? I am just hitting my anniversaries and I always find it a very tough time. I have tried to turn the dates into positive dates - last year a friend took me out on diagnosis date and we had a very special day together, but I wonder if you have any thoughts or tips.
Lots of love, Evie xx
Evie-S and SwissMiss
Evie-S - I'm really pleased that this post has helped you. See, you got to hear from two of us who are many years down the line now! Maybe we'll get a few others chiming in. I'm always around to chat if you ever wanted to.
SwissMiss - hope you're feeling a bit better. I'm really pleased that you came along when you did, as it's also so nice for me to hear from another 'oldie' as well. Like I said above, always around to chat if you ever wanted to.
Much love to all xxx
Hi Evie-S and Ruby1
Thank you for your kind words Evie-S, though it was pure fluke I popped in when I did. It makes me happy that I have been able to help, in some small way, though left me wondering maybe I could/should do more.
However, Ruby1 is correct, for a variety of reasons, many no longer post on here, myself included though I have responded to private messages, when notified by email from BCN (or Breast Cancer Care as I knew it) over the years.
4 years post dx is great to hear and I hope you continue to keep well.
Ruby1, thank you, you’ve given me ‘food for thought’ to pop on the forum more often, so hope to see you around.
Much Love to you all 😘
Ruby1 and Swissmiss - thank you both for coming back on to share your stories and give us all hope and encouragement. I am 4 years post diagnosis and I always love to read posts from those diagnosed years before that. Very best wishes to you both. Evie xx
Murnaloo, I always remember loving hearing positive posts from oldies when I was going through it, but those were few and far between, and I also remember others trying to support 'terrified' folks by saying that there are plenty of people doing well, but they don't use the forums much, if at all, anymore due to having moved on. So I promised myself I would pop back in once in a while to let you all know how an 'oldie' is doing. It helped me so much at the time to hear from the oldies. And here I am, so thankful to be here and doing well. xxx
Swissmiss, I know I said it before, but I'm so pleased that we timed our posts to coincide, and I do hope things improve really quickly for you. I knew I recognised your name when I saw it come up on this post, and so happy to hear from you. You take care xxx
Thank you for your kind words. To be completely honest, had it not been for events happening around me, making a conscious decision to log-on to the forum together with the timing of Ruby’s post, I may not have posted myself. Glad I did though and good to know it helped you, hopefully others too.
Hope treatment is going as well as can be for you on this mental, physical and emotional rollercoaster ride. Hold on tight. Much Love 😘
Lots of reflection this week, and yes, feel better for chatting, thank you too, serendipity hey!
Much Love 😘
Wow, thank you so much for sharing your experience and stopping by again with such a positive story! It is so helpful to hear from people who have made it through and can offer hope to those of us in the thick of things.
Understandably, many folks who have had a positive experience move forward and don't want to dwell in a forum all the time. So, it's really supportive of you to remind all of us that we can pull through this and celebrate many milestones, like you have done, in the years ahead.
So pleased that our timings coincided and so lovely to hear from you, and hope just chatting has helped a bit.
What a journey your little boy has been on, and wow, now a 14-year old! Amazing what medicine can do these days. So happy to hear how well he's doing and how well both of you were looked after.
Take care xxx
Thank you Ruby, yes, this Forum was my ‘crutch’ back then and for some reason, which I can’t explain, it has become my support once again tonight, your post was super timed, the pick-me up I needed.
Yes, my baby is now a 14+ full on teenager 🙃🙂 I am eternally grateful for the medical care I received, all disciplines (Obs/Onc/Surgeon) working together for the best possible outcome, my Surgeon telling me he had ‘2 patients to care for’ - he kept his promise there.
Right back at ya Ruby, so good to chat tonight, stay well and take good care 😘