Curly, don't feel embarrassed. Better out than in lovely! And this forum is a godsend when its hard to make sense of what happened to you.
Hope today was better. X
Hi Lucy. I’m just plugging along. I have a lot of stressors in my life right now, besides health concerns. If only we had the option for do-overs. Just trying to make it through a bad situation.
Thanks for answering Lucy. I was having a very bad day when I posted this. Thanks for the support. I’m not a therapy type of gal. Ill deal. Thanks
Hi curlylocks, the last thing you are is a loser so please don’t think that. You’ve been through a very difficult traumatic experience which you’re still dealing with. Now having this hanging over you, you’re right back where you were.
Yes there’s people who ‘seem’ to breeze through it but I doubt they do.
I’m one year since diagnosis tomorrow and I haven’t coped with any of it at all. I’ve felt like you do, haven’t understood why I couldn’t cope and am still really hard on myself because of it but it doesn’t help. I really believe that at some point dealing with what you’ve been through catches up with you and I’m sure those who appear to cope will have it all to deal with at some point.
Did you have any counselling after treatment ended? It’s not too late to see someone now as it sounds like you need someone to talk to who understands. I hope you’re ok hun, happy to chat if you need to xx
Dear Curly locks, a huge 'wonky' hug from me. I'm so sad to read your post. Could you maybe get some relief by way of a mild dose of anti-depressents, just to help a little bit. Hope you get a decent nights rest - get the PJs on hun. X
Hi curlylocks that’s really hard on you but they obviously feel there is nothing to worry about although easier said than done I have just come to the end of my yearly mammograms I’m glad but also bit scared to . Cancer has a way of always being on your mind I’m coming up for 6 years diagnosis sometimes it’s easier then at times I’m right back to diagnosis . If you feel you want further investigation now ask your breast nurse to do this for peace of mind the chances are everything fine if you need to talk just pm me I’m always here for a shoulder to cry on please keep me updated xxx
Hi Lucy. Thanks for responding. I was going to force the issue but then thought what are you going to do if it’s bad news. The treatment has had such an adverse effect on me, not sure I’d do it again. So I’ll wait for July with fingers crossed. The depression has hit me like a ton of bricks though. I’ve always had mild untreated depression but nothing like this I’m such a misery guts can hardly bare my own company. I see all these seemingly brave movie stars seem to breeze through their diagnosis and run back to work proving themselves healthy and fit. I feel like a loser on the cancer “journey”.
im really sorry they’ve left you hanging in limbo. I can imagine what that does to your head, waiting and wondering. Unfortunately I think it’s hard to avoid the what ifs so well done for doing so.
Could you talk to your BCN about the waiting and what it’s doing to you? By the sound of it you need some help. I hope you’ve got people around you at home who are supporting you xx
Hi Rockstar. I’m just over 4 years post diagnosis. Mine was Her2+ And grade 3 also. The side effects I’ve had from treatment are continuing. Herceptin was stopped early because of heart damage, which still exists. I have non healing rib fractures and unrelenting joint pain to name a few. I’ve tried to keep the what if thoughts of it returning at bay but last month had my mammogram and was called back to “clarify” something. Had another mammo and ultrasound and was told I’d be having a biopsy. When They didn’t call me to schedule the biopsy I called them and was told they had instead rescheduled another ultrasound in 6 months. At first I was angry. Don’t they realize the anguish we go through with worrying thoughts. Then I decided to look at it as a 6 month reprieve. However I’ve fallen into a deep depression that I don’t know how to escape. I cry all the time.
Merry Christmas everyone. Hope you are all well and having a good one.
Beckett - I hadn't "emailed" you. Was referring to my message to you on this thread, dated 30.11.
It disappeared temporarily. I was asking how your shoulders were now? If any better? And talking about being vigilant, as oppose to paranoid. Have a read back if you haven't already.
Lots of love to all xxxxxxx
Well, that's a bit weird. My previous message/post of 30/11 - 09.32am has now appeared!!
Beckett - I left a previous message for you in the above post, which disappeared temporarily. Hope you're doing okay.
Hope everyone else is doing okay too
thank you for your message I started to read then it was gone still having problems opening up pm messages so need to sit down and work that one out but thank you for your thoughtful messages they do help and hope your all good xx
Hi again Rockstarchic - thanks for the hug.
My last post to you and Beckett on this thread has just disappeared for some reason? Don't know if I inadvertently clicked on the "report inappropriate content", so removed it myself ? !!
Just sent you a quick email, in case you hadn't yet worked out how to pm x
Hi again girls
Beckett - How are your shoulders? Are they any better? Personally, I'm all for "vigilance", without being or getting paranoid about every ache or pain. I wouldn't consider yourself "soft" in going to your docs if you're concerned. It can only help to hopefully allay any fears you may have. If he/she is anything like mine, they're only too happy to check into anything, because they always bear my BC history in mind.
I was having stomach probs a couple of years back. A liver scan showed up cysts and a shadow?!! (mmm yeh, that understandably got me a bit worried!!). Turned out to be just a "haematoma", which is a bit like a birthmark, probably been there all my life, but I'd never had cause or reason to have a liver scan before. Apparently liver cysts are quite common and often harmless, benign. But, because of my GP's conscientiousness, I was also given a Gastroscopy (camera scope into the stomach and small intestine), which showed up a couple of area of inflammation, but mainly a Hiatus Hernia, which explained my stomach probs. So, it turned out it wasn't all about and for nothing, and worth having done.
Do you think your shoulder prob may be something to do with your chemo/treatments?
Rockstarchic - I must apologise for my comment about your daughter. I hadn't picked up on you saying she was "full of hormones" in her shouting at you, and that she'd been right by your side throughout your diag and treatment, bless. Heck, polycystic liver disease to cope with, as well as all your BC experience.
BTW, have you found out how to pm yet? If not, you just click on the pink envelope symbol at the very top of the page, on the right, in between the bell symbol and your name symbol. It brings up the emailing page for you to send a message to your chosen postee's name. If you've "received" an email, the envelope has a number one on it, when you open the BCC page, so clicking on the envelope then brings up any messages received.
Keep kicking that mental butt, ladies. With time, it'll slowly start being shoved towards the back of your mind, instead of constantly being at the front of it.
Lots of love to everyone xxxxxxx
Hi mystery mouse I think in general we all feel the same I had a hospital appointment after speaking to my breast care nurse . It was a new consultant and a female and tbh she eased my fears for at least two days haha they cannot give you the all clear they don’t know but she did ask me questions and a complete overall examination of lymph nodes breasts I believe the mindset has to come from me so I am trying to accept me as me and I think that’s what is making it hard but have to try xxx
I remember feeling like this and I still do in the beginning the reality of cancer kicks you in teeth so hard you feel numb in time it will get better and lots of women move on me I’ve always been anxious and a worrier but I do enjoy life . The aches and pains worry you I know been there but after treatment which is hard you have to find your new normal . I am five years down the line age 57 now and getting older your body lets you down . Before breast cancer I had 2 liver resections as I have polycystic liver disease and still have so I have pains in my right side panic button raises its head but I have always had this pain pre BC days . Please if you are feeling lost message me I don’t quite know how you pm but please do talking helps xxx
So good to see this thread. 23rd of November is my first ann of finishing chemo. I was diagnosed with stage 3 triple negative with positive lymph nodes. My reconstructed is now going to be delayed as thd waiting list is closed. Gutted.
My shoulders ache so much at the moment I'm worried it's returned but I don't want to go to the drs as I don't want to seem soft! I know it's probably just age (53) and simply knackered from the treatments.
I too am struggling to enjoy living again. Feel purposeless.
Good for you - Oldspice. I'm well with you on the moderation to have what you want or helps. Cheers - followed by clink of glasses xxx
Well I know all about feeling doomed (to quote Frazer in Dad's Army) I suffer with Seasonal Affective Disorder and right now I am struggling! I also have Asperger's syndrome so the triple whammy means I have mega meltdowns in winter. My one glimmer of hope was an occupational health assessment recently which recommended a therapy light. However this was dashed today as my employer declined this request. I can't afford to buy one myself as it is prohibitively expensive. My depression can crush me - I fall into total despair that there is no point and my future is just Death. Before diagnosis it was a little easier as I could go out for a drink with my husband on weekends to relax without feeling guilty about 5 drinks being binge drinking and a recurrence risk. All 'the 'do this don't do that' and makes me totally p****d off. What proof is there that all this stuff will stop cancer anyway? I'll tell you, absolutely none! No doctor can tell you how you got cancer in the first place so how can they say with confidence that living like a Trappist monk will stop it? To borrow a quote from cancer blogger The Salty Cow: "Opinions are like a***holes everyone's got one. I've found my happy medium finally and it works for me. Moderation.
Life is so precious and we shouldn't be denied the things that make us happy just because the newspapers tell us so. Have that glass of wine and eat that chocolate if it makes you happy. Run that marathon and celebrate with a steak. Binge on Netflix with your cat all day."
So sorry for going on a bit and venting spleen but rant over now and oddly I feel a lot better for it!
I forgot the best one girls
Why do Giraffes have such long necks? Because they've got smelly feet!!!!
Hope you're all having a good Sunday. Yes I know, even better with my joke
Umph Jaybro - Yeh, lack of "empathy", which can only come from a "sharing" of the same. Maybe if she had had it (I'm not wishing it on anyone though), she'd be more understanding Cancer forces us to question our mortality, probably a lot sooner than we would have!! How can it not, after a diagnosis with it. It literally pushes your nose into life's brown stuff, and question it, and all sorts of other stuff, like why me, what have I done wrong to deserve it?
Jeeez, afraid I'd have had to have had a gentle, but straight talking conversation with that person, however long I'd known them. I admire your patience and tolerance of such.
Well, folks, I was reliably informed by a well-intentioned friend yesterday that everybody has to live with a sense of their mortality so I’m not alone and cancer doesn’t make a difference really does it? Conclusion: said friend lacks empathy.
I felt amusement and sadness mixed - our friendship goes back almost 50 years yet she can’t allow me to feel differently about myself and the world now. I really think she thought she was helping.
Typical Me - Yeh, I DO remember you from previous posts, sweetheart. Think it was ref reconstruction? Yeh, it DOES "smash your world up" and smashes up you as person. It's never gonna be a good time for such a diagnosis, is it. Not working at the time either - sounds like an extra loss? Want to share it? Crying has been shown to reduce your body of cortisol, the fright and flight hormone that builds up, so its GOOD to. Listen me, I'm sounding like some guru and authority on the post BC blues. Don't be fooled!! Wish I were, I'd be could be earning a bloomin fortune!
Rockstarchic - Your daughter? Mmmm. Jeez, it's bad enough having to cope with your diagnosis yourself. But, you're also having to cope with others, who've grown to view and depend on you as being indestructible, which is probably your daughters view? And don't we just tend to think our Mums and Dads are indestructible, when of a certain age. Until we learn otherwise. Must be difficult, and a huge disappointment and shock that you aren't. How old is she? Guess she feels let down, do you think? Perhaps if you make a point of telling her sorry if she feels let down, it wasn't your fault, wasn't something you could help, but that you need HER help and support, she would better understand and be more supportive?
Eeee, I dunno. BC's bo**ox, innit!! xxxxxxxxxx
My post wasn’t about not being happy because most of the time I am it’s this feeling of doom which gets me every so often which I can’t shake I love a night out enjoy my job and have made such amazing friends on my journey . My marriage isn’t the same I’m not the walkover I was and family don’t like me standing my ground . Classic comment from my daughter tonight was I hate you how was I lucky to have you s a mum . What happened to that sweet little girl who wouldn’t leave my side when I was diagnosed I fought so hard to see her grow up . I know she’s dealing with hormones but saying things don’t mean a thing to her life can be so cruel xx
Hi Delly lovely to read your post you helped me before if you remember our chats. Hope you're ok. Don't know why I'm struggling again at the moment. My diagnosis was actually three years today so may be that's why. I keep randomly crying but I also have a bit of sadness due to not working at moment bit complicated really . I worry about being so happy again weird I know but I was so happy at diagnosis it was so out of the blue and smashed my little world up I think I'm scared of letting my guard down but there's no option really is there or you're left living a half life xx
Delly, that is the most honestly open thing I have ever heard. And you have kept your sense of humour. I'm not just applauding you, I'm on my feet doing it.
Some amazing and inspirational ladies on here. Hooray for that!
God bless petal. X
Typical Me - Mmmm yeh, I so get what you mean about "grieving" for your old life back. Old "self" more like, for that matter, don't you think. Guess its all about trying to accept you're not going to, after such a massive life changing experience, and about finding that new "normal" that's often spoken about in Forum posts. That it's bound to change your outlook on life, but that it can leave you with different strengths, that you may not have had before. It certainly made me a more compassionate human being, which i'm considering a strength.
I was diagnosed as Bi-Polar 3 years ago. I put the cause much down to grief at losing all three of my direct family, the last, my brother, to suicide. Coupled with also having to give up my profession, business, income, home, lifestyle due to occupational health probs, therefore also losing huge purpose and reason to my life. But I don't doubt that another part, was also down to losing both boobs to BC, and it all being within a period of 10 years. So yeh, I desperately grieve, now for also different reasons, the very mentally strong, and together person I used to be, compared to the wreck I now feel. But hence me understanding your grieving.
On a much lighter note (thank god I hear you all say).
Wonky - You, sycophant?!! Naaa flower. I just noted your saying about people viewing posts but not posting. Just thought I'd promote your healthy "letting rip" thread. I giggle at your name every time I see it, because it's the punch line to one of my favourite Xmas cracker jokes. Favourite, meaning because it's one of the few I CAN remember:- "What do you call a three legged donkey"??? Oh come on girls, humour me please.
Don't encourage me tell more - Ohhh alright then you lot, but only as it's approaching Panto season.
"What do frogs wear on their feet"? - Open-Toad Sandals !
"What do you call a man with a spade in his head"? Doug!! Ha ha
And wait, wait . . . . "What do you call a man WITHOUT a spade in his head"? . . . . . Douglas!! (as in Dugless . . . without a spade??!! . . . Oh come on . . . Ho hum, never mind Delly). Too much watching childrens breakfast tv, my juvenile humour's just wasted.
I'm slinking off back to my hole now, you lot. xxxxxxxxxxxx
I feel exactly the same as you. I feel as if I'm going around in circles, repeating myself and want to turn back time.
I find Mindfulness is not as easy as people think. You have to work at it and put the effort and time into it.
Thanks for the best wishes.
I hope this week isn’t as bad as you think it’s going to be. I haven’t got to my first mammogram yet so can only imagine what you’re feeling. I lost my mum when I was 14 and not having her or any close female family has been really hard so understand how you feel.
Ive just started a mindfulness course and am hopeful that it will help.
Like I said before it’s the not knowing how to move on that’s so hard. I feel like everything around me is normal but I’m not, everything for me has changed so quickly and beyond my control and all I want is to turn time back, but without the cancer!! I’ve done the moving forward and the Hope course but I think I rushed into things too quickly. Somehow I’ve just got just find a way to cope. I’m aware I’m going round in circles and keep writing the same things but I haven’t really got anywhere else to say these things, everyone else has moved on and want me to do the same including the family xx
I'm with you all the way on this. I've a hard week coming up which makes things worse. I have my second mammogram on Friday and this week is also the anniversary I lost my Mum to Pancreatic Cancer. Along with other things going on in my life.
I've just finished a Mindfulness Course which I'm still trying to put into practice. I'm also seriously considering hypnotherapy in the new year. I'll try anything.
A cancer diagnosis is very overwhelming and whatever treatment you have or don’t have the word is frightening. Everyone paints this glossy picture look they removed it and it’s gone now so move on in time we do we get back what makes us happy but the reminder is always there when we look at ourselves and it is unfair hopefully once you have reconstruction you will feel more like you . I am 5 years and although I do get moments of feeling lost what I went through saved my life . The thoughts for me will never go away I just need to my path to deal with it and you will to big hugs xx
Thank you for your post I do feel better after rant and after everyone’s comments I work almost full time so I’m doing ok it’s just the wobbles that’s get me all anxious and I have considered hypnotherapy I will try anything big hugs xx
Delly. Hello! I'm not a sycophant, but I am a huge fan of what this forum can achieve.
Your point is excellent: .....promoting the mind-set of "what if it isn't " ( rather than ,"what if it is "). That creates space in your head into which you can gradually let the good thoughts flow. Like you I believe stress is a huge factor. My main goal is to minimise stress in my life, to guard against recurrence.
You are voice of reason Delly and I appreciate your post.
Hoping other ladies will keep the debate going.
Hug to you and all on here. X
I guess Oncologists feel an obligation to "warn" of a possible recurrence, but not that it might not, so leaving someone to cope and live with a constant fear that's often difficult to shake off.
I don't get these counsellors you're all mentioning. Yeh, I understand the benefit of distraction methods. Would have thought it better to work on a persons mindset, i.e. changing their thinking to What if "it's not", rather than the constant fear of What if it "is"; and it Might "not" return rather than the It might "do". Given that one of the causes of cancer can be stress, the chemicals it releases can and should never be underestimated, and are a hidden killer. Always thinking What if it "is" and It "might" do, are only likely to increase a persons possibilities of it returning, and at the same time constantly put a damper on you actually living more to the full. So why don't oncologists also say: "BUT it might NOT, so get on with your life anyway", and counsellors work on the same principle?!
Have any of you thought of, or tried Hypnotherapy for reducing/anxiety stress, or more positive thinking
I'm 12 yrs clear from two mastectomies 2006 and 2007 at 47 and 48, both also treated with full ANC (then standard treatment before the advent of SNB) and caught early enough not to have metastasised, so no chemo for each. Bounced back so well from the first. But the second, just a year later, was even more of a massive shock than the first, it being a totally different unrelated type. Makes you wonder, doesn't it. Did me. That you never know what's going on in your body, and you lose your trust in it.
That Cancer thought seed does gradually get pushed further to the back of your mind though, rather than always being at the front of it all the time, and an every day thought. I seldom think about it nowadays, but then I was lucky not to require chemo with either, which must make it all that much more difficult and harder for you to dispel those mental fears. Not to mention the onslaught to your body. I do feel for you all.
I always remain vigilant if anything strange occurs bodily, but not paranoid. My doctor is also extra conscientious, due to my BC history. To the extent, that when I went recently with occasional sharp searing pains under my jaw line, I was just thinking it may be a blocked salivary duct or gland, not anything cancerous! Whereas, he examined my throat, neck and mouth, and said "There aren't any tumours to feel"!! Bless him.
I'm not a fan of people who say "Pull yourself together", unless they've been through cancer (or nasty depression) themselves. But then, I don't think you'd hear it from such people who have. I'd certainly never say it to someone with either.
Go and join Wonky for a good rant on her excellent thread "We Are All So Pleasant and Polite". This Forum's such a great place, invaluable for support, giggles if you're low, shared advice. Keep posting ladies.
Lots of love and healing hugs to everyone xxxxxxxxxxxxxxxx
There's a coincidence Rockstarchic and Oldspice as I too had my treatment at that Cancer hospital. I've also been referred to a Counsellor there and think the same as you both!! I know somebody else too who was referred to a Counsellor there and thought the same.
TypicalMe-I'm exactly the same as you. I worry about everything and this diagnosis has sent my stress levels through the roof.
If only there was a magic wand!!
Hugs to you all.
Hi Rockstarchic I agree with your earlier comment that the only thing that will help is my oncologist telling me it's gone for good. I'm trying to change my mindset but it's hard. My hubby summed it up yesterday saying as I'm a worrier by nature I'm not going to suddenly change with this. Plus TBH our fears are sadly very valid. It's great we can speak so honestly here xx
I went to Velindre hospital to for my treatment and counseling which was useless so know how you feel it’s all a scary journey hope your good xx
Fully agree with the comments on this thread. Even though I had a different prognosis the end result is still the same, a life of ' meh.....' with no certainty which is a nightmare for someone like me who is on the autism spectrum! I had a crap experience with a counsellor too who I saw at Velindre just after treatment - she told me to play parlour games as a de,-stressing pastime rather than go to a pub as alcohol caused breast cancer, and when I told her my phone went haywire and showed the date of 23 July 2032 which I immediately saw as a prophecy of my date of death she just shrugged and said it is whatever I believed! No help at all. She was also supposed to be experienced with autism and had a trainee at one of our sessions who just kept staring at me as if I was an alien 👽 Did not help me at all. After 5 years I have chosen to do what I want and say 'sod it' to all the naysayers with their scare stories of what one should or shouldn't do after DX and if I have had a hard week at work and feel down I have no qualms about going to the pub and meeting friends. Sending you all hugs x
It the trauma. You get bitten by a dog, you try to avoid dogs, but no-one can promise you'll never encounter an unfriendly dog ever again.
I've put a hold on counselling sessions as wasn't able to see what she was bringing to the table tbh.
Nightmare last night that 'it was back'; thankfully I woke up not too far into it, so was able to settle myself back to sleep.
Hugs to all. Wonks
I could have written your comment myself.
I want somebody to say you're " cured " but I know it's not going to happen. That's why I struggle.
Hugs to you all.
Here’s the article. I found it when one of the nurses here posted the link : http://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what...
I read it every day. I’m still waiting to get my first ‘all clear’ letter and my husband is a wreck. It doesn’t matter that it’s now been two weeks since the mono-mammogram so the news will be good. My heart lurched when I read your post. I really feel for you. This first experience has been hard enough (I was numbed out/in denial from diagnosis through chemo to end of radiotherapy) but to live with it all the time sounds unbearable. I doubt the article will make a difference but maybe a regular reminder might be a distraction (better than a jigsaw).
Take good care of yourself and don’t give up xx
Everything you say is true I can’t say to people how I really feel because no one understands but you ladies do I’m going to put everything into perspective and see the bright side of life I’m sure it’s still there just need to open my eyes and find my path I do really love life that’s what makes it so bad I feel I have been given these 5 years to make it count I have done lots of fundraising and raised money for breast cancer care I just keep on doing it until that research finally shows your NED permanently wouldn’t that be nice xx
I agree why do they say that see our positivity saw us through I was determined I was going to see this through I had such fighting spirit I need to get it back . I pushed myself so hard through chemo I kept on smiling when underneath I was mush I intend to live a long happy life and posting this had given me the courage to find me again we should all do it cancer is not going to define who we are it is to say how strong we all are for coming out the other end we are warriors so let’s make sure we tell cancer to bleep off haha xx
I don’t believe anything can stop the fear for me because the words I want to hear are your cured and your not going to get cancer again . The reality is that’s never going to happen in my lifetime I desperately so want a lovely life without this fear it’s such a cruel disease and it makes me sad how it’s affected all of us I don’t think any counseling will work for me I’ve tried them all. The aches and pains that you have after treatment don’t help but glad I’m still here 5 years on that I’m so grateful seeing my ten year old turn into a 16 yr old priceless . Big hugs everyone this is a tough call xx
Thanks for the hugs ladies. It's really helpful to know I'm not alone in the way I'm thinking.
I'm not seeing the Counsellor until 2nd of December which would make it five weeks since I last saw her. So much for her support and helping me through this.