Can totally relate to that.
i sometimes feel the same but try to think I‘ll finally make it to the lucky group of people who don’t get it again. Two tumors were enough!
Good luck everyone!
So well put. I’m not even through chemo yet and all I can do it try to work out how long I’ll have before it comes back. I want to ‘get through’ my kids’ childhood in my mind etc. I think I’ll wake up every day for the rest of my life wondering if this is ‘the day’ I get an obvious symptom.
Hello Bellis Coldwine, I don't come on the forum very often these days but just popping back in and noticed your post - particularly about feeling as though a recurrence is getting more likely as time passes. I've been told twice now that its actually the opposite. My oncologist said it a couple of years ago, and yesterday the surgeon I saw for a check up said very firmly that "Every day that passes means it is less likely to happen again". He said that of course it can sometimes happen years down the line, but that by far the most common time for recurrence is the first couple of years. My first diagnosis was in 2014 and I was unlucky enough to have it twice more, but each time was treated and I'm now 3 years clear - and planning to stay that way! It is still early days for you and, like other lovely ladies on here have said, I do believe it gets easier over time. Take care, and try to keep occupied with things you enjoy. Love Mo xx
@Guest user lovely to hear about your crafts and poetry. Yes, indeed every cloud does have a silver lining.
Keep enjoying your crafting! When is the craft fair?
@Guest user - You're like one of the clever, talented, crafty people I enjoy watching on "Find it, Fix it, Flog it" programmes. 👏 😊 xXx
@Bellis Coldwine - Referring back to your last post, Yes, I especially feel for you and anyone else that has had to deal with a cancer diag, ops and treatments during Covid. Cancer's difficult enough without other massive complications to cope with.
You WILL and DO eventually (again with time) start living "more normally" following cancer wise, I assure you. How long before very much differs between individuals. But I 'would' recommend you, and ANY one else, grab at any help you're offered or see, that is available, so to hopefully help that happen sooner.
@Eglis - I love how you put it, "not let it be a controller of my mind" and "For a long time, it stayed "next" to me and was always present. But now I feel I‘m able to have it behind my back and it "follows" me rather than "accompanies me"". Pretty much what I'm saying but more eloquent.
At some time, it'll no longer be a waking thought, and just become a "seed" that gets smaller and smaller, and more and more pushed to the "back" of your mind. No, I don't think it (that seed) will or can EVER go away completely, as none of us or consultants can ever be sure, know it won't reappear and rear up again in its secondary form, as Jaybro's unfortunately experienced.
@Jaybro - Thanks for adding all those support/course details and recommendations. Yeh, so evidently there IS a lot more help out there to access (preCovid) than during my time back then. Think it needs more signposting though, rather than you having to know to search for it. It'd be really helpful if the hospitals gave people a comprehensive list of it all. Sorry to hear of your frustrations over gaining a blue badge. I know someone who's clever at crafting who may be able to "make" you one, if you're unsuccessful!! 😆
Speaking of whom, which, and on a lighter note. . . . .
@Guest user- Hi again PoopyPoppyPops. 😆 (I AM awful). How did I miss your lovely Peppa Pig piccie?? I do love innocent kiddie fun!!! Glad to hear you're still craftying. Here Here - I agree on and echo Jaybro Jan's PRAISE for your resilience, strength AND quite frankly, bravery, in dealing and coping with it all on your own.
I'm soo envious on your beautiful Jays and Woodpecker garden visitors. I've been in a dreadful mental Bi-P pit, since week pre Xmas, through N.Y. and my Jan birthday, so my poor birds have been sadly neglected. Started resurfacing a few days ago, and the first thing I did was go out and feed 'em. I only have to pull the curtains back slightly and it sends up a signal on the tweetie-line (as oppo to grapevine). All start chirping away, as if to say "Hey, Delly's garden restaurant is opening again. Yum Yum"!!! 😄
Sending lots of love and strength to everyone, DoolallyDelly xX❤️Xx
At the moment I am making wool braided wall hangings - but the list is long I just love making things.
Little wooden sea cottages, made from the driftwood and shells on the beach, lace wedding wreaths, themed wreaths, needle felting, decoupage, painting old little bits of furniture, stools, chairs, the list is endless the house is full of craft wool, paint felt, shells, seaglass, napkins for the decoupage😀
Poetry I started writing after my break-up with my ex two weeks before my 50th birthday along with the diagnosis that I had MH issues primarily Borderline Personality Disorder I just sat down and started writing, the writing was SO cathartic I then joined an online poetry forum plus sending some of my work out to literary mags (lots of rejections) but they are all forgotten when one writes to tell you they are going to print your piece in their next mag. I have never published anything myself (no one would buy it) 😁The writing even helped me through my cancer diagnosis, far better to be able to write about it than allow it to fester away.
Sorry, for the ramble.
PS I am glad my ex left me if he had not I would not be writing, doing crafts or simply being allowed to be myself, every cloud has a silver lining...
Me too, Poppy. My husband has stopped watching TV apart from the politics which he records. He gets so upset at those effing cancer ads that try to be so upbeat. If I hear about the battle against cancer again I’ll scream. I’ll metaphorically flatten the next person who refers to me as a warrior. And this week, there’s more celebs encouraging us to Stand Up to Cancer. Aaaargghh.
I think I’ve said it before but I am not exaggerating or just saying it. I mean it. I am awestruck at your resilience. To go through this alone, to manage all the practicalities and side effects with no support around you is incredible. Wrong, but incredible.
The odd thing is, I’ve been Stage 4 for 11 months and there’s been no support except what I’ve searched for. Then I contact Macmillan to help get me a blue badge and suddenly the hospital’s Adult Social Care section contacts me. Why does no one tell us or signpost us to what is available? There’s no holistic, wrap-around care that we need. It’s all piecemeal.
So yeah, I’m with you on the anger and disappointment at being left to deal with things. I did put in a complaint to my GP about various points where they missed opportunities to spot my secondary bc, including the fact that GPs are obliged to do a general health and wellbeing check for new cancer diagnoses. The reply was that, since I’d had cancer before, they didn’t consider it a new diagnosis. This is a different disease entirely!! They are so ignorant about cancer - just refer us on and wash their hands of us.
So, chin up. We’ll show those b**gers (when we find the energy).
I agree about resilience but not everyone is able to keep mustering that reserve we all have our breaking points - the NH put's resources into treating us for our cancer, but there is NO actual after care support. Covid of course has made it worse, but I know people who have been treated long before Covid telling me there was not a lot more before.
What upsets me are those TV campaigns making it all sound and seem as if there is 'a plethora of back up out there' for cancer patients.
Anyway, I am where I am and I understand/accept that only I can alter how I feel and deal with it all, wrong or right it is what it is.
Thanks everyone at least on here we do speak about 'how it is'.
@Jaybro - Hi girl. Good to hear from you and how you are. Great post from you.
I totally agree with you, ref the %ages attitude. I started concentrating on the "What if NOT", rather than "What IF" and allowing it to hold you back from things and moving on. Still took me to that 5 yr point of the last check up, being signed off so no more of the medical appointment reminders/emotional prods, though. But I wasn't aware of this Forum back in 2006 - so wish I had been. There was a support group I went to for a while, attached to the hospital, but that was about it then, as far as I was aware.
Yeh, as others mention, I found that really helpful from the being among similar others point of view. Hard to beat being able to chat with, share experiences and support each other (plus having a few laughs of course), as with this lovely Forum. It's invaluable. And even better when in the flesh, rather than through the ether. All helps you feel less "alone" with it. I love to hear of some Forum thread groups and outside courses, who DO actually meet up and forge good friendships from something so sh***ty. The old "Something Good from Bad".
Prior to all this flippin Covid, there does seem to be, from what I see, read and hear others talk about on the Forum, a lot more available support wise nowadays, to help more with the "mental" recovery. I, and from what all of you are saying on here, think that's the most difficult part following ops and treatments. Our bodies are quite amazing at healing and recovering physically, but the mind isn't so great is it. Takes that much longer. So the more armament/weapons/methods provided and made accessible (when the world's more "normal"!) for the mental aspect, and then the more different weapons and methods a person takes up for and throws at it, the better and quicker people would be able to move on.
I still think more needs to be provided to help people cope better with the reminders/prods from annual checks, and the mind being flung back to the beginnings again though.
Sorry for the rabbiting, just some thoughts.
Lots of love to everyone, Doolally x❤️x
Waiting, waiting, waiting… Is the drug still working? Has it already stopped working? There’s conflicting evidence right now. Which treatment next (I know it’s one of the baldy ones so bang go my purple and steel hi-lights I had planned)?
Hospitals are great at the physical side but I think 50% of the experience is always going to be emotional and, once the treatment ends, up it goes to 99% and the support isn’t there. Hospitals consider it’s the GP role. The invisible and inaccessible (that reminds me of a school assembly hymn!) GPs say it’s the hospital’s role. The charitable support services are mostly on hold because of covid… And we are left in this awful limbo which we have to clamber out of with the few resources we have left after treatment. BUT, Ladies, we have found a resilience most people never have to find. We may slowly make our way back or bounce back to living out new kind of life, but that’s still resilience.
And if it comes back, we have that resilience to keep on taking what they throw at us. We can waste our precious time fretting about what may never happen or choose to park that fear and just bring it out on special occasions. After all, if your chances of no recurrence are 75%, why think you’ll be in the unlucky 25? Why not go for the lucky 75? If you’re wrong, at least you’ll have had peace of mind for a while. When it was put to me like that, my whole mindset changed and I looked forward instead of looking back.
So the word of the day is RESILIENCE. We have it in abundance. Trust it. And find communities like this where you know people think and feel as you do. I went to a BCNow secondary support group on Friday. Yes, part of it is distressing as you hear of failed treatments and worries about young families, but it is uplifting and validating to be among people in similar circumstances who you know ‘get’ what goes round and round in your head. And I found that through FaceBook. I found a Triple Negative group ( I was quickly upgraded to the Stage 4 TN group lol); Seconds Together, Make Seconds Count… there will be innumerable groups for primary bc. Stick to the one you feel most comfortable with. It’s interesting how much comfort there is in knowing you aren’t alone and how much practical advice there is - and a lot of dark humour.
Moving On is run as an online series of Zoom sessions by the charity, Maggie’s, at the moment. It will still provide food for thought. Looking Good (with it’s coveted goody bag with everything from Rimmel to Dior) is run by a charity called Look Good, Feel Better. I’m signed up for chair pilates and chair yoga with a charity I can’t remember. And don’t forget, BC Now has all sorts of support stuff going on, besides these forums. Look it out. Or wallow. Nothing wrong with that as a choice either. I’m off now to do my cherished relaxation with Progressive Hypnosis on YouTube, another valuable resource.
Take care, everybody, and be kind to yourselves. There’s nothing wrong with feeling like a wimp if that’s what you need. Just don’t make a career of it.
@weejeannie - Umph, I'm soo sorry to hear of your ongoing and upsetting complications, and so have mastectomy looming. Hope all goes well with it for you, and following x❤️x
Hi again girls
Sorry, bit of lighthearted banter, on top of Poppy's (Poopy's!!🤣) Rugby viewing. Am admitting to presently watching a guilty secret pleasure of Masked Singer😆 Some folks may think it commercial "poop", to coin Poppy's phrase, but I don't care. I find it's an easy-watch, light hearted entertainment show, which I'm all for. And is from someone who often watches early morning kids tv progs (Peppa Pig a fave), for exactly the same reason, i.e. harmless, and again light. Anything to relieve/distract one from other life's seriousnesses I say. Tonight's judge panel Guest, Joan (Collins), looks blummin fantastic in her mid/late 80's? - not so sure whether it's all natural 🤔 (sorry to Joan if it IS).
Compair, Joel Dommett? - am well impressed with. Very Funny, witty, and also ladies, quite handsome! Me thinks he may just become tv's next Brad Walsh.
On a more serious note though, I'm somewhat further on than you all on here. That 5th year final annual check reminder, and it's bringing it all back again to the memory and prod to the emotions, was back in 2012, and an "all clear" literally stopped me living my life "in fear" of it coming back. From that point on, gave me a "Yes, I'm aware of the possibility it may recur, so to be vigilant of any possible symptoms of. But If it happens, it happens, and I'll deal with it then" attitude. Yes, that famous TIME thing is a HUGE part in coming to terms with/accepting this different me "in front on the mirror", and settling with all the BC factors. Also, I think part of this attitude with me, may be that I've had a more recent Bi-Polar Disorder diagnosis these last 5 yrs, which is actually proving more life threatening to me than BC. BC being a physically "visibly" detectable disease on mammos/scans etc, and a now much more successfully treatable disease these days, rather than a physically "unseeable" mental problem.
Am not in any way wishing to sound an arrogant, unempathetic, and been there, experienced it know it all. Faar from. But, Yeh, am just saying it's early days yet for many of you. Simply wishing to ensure you that you WILL feel better about IT and YOU.
I do, however, think that there are methods available that may/could help you in the interim, rather than my 5 years, and didn't seek or weren't available!? Be it counselling, assorted therapies (Moving On courses/ hypnotherapy/yoga/mindfulness meditation?), to help with any negative holding back thoughts and possibly help you to deal with it sooner?? That's when/if?? available due to Co-flippin-Vid!!!
Lotsa love to ALL xX❤️Xx
So sorry you feel this way but you’ve sort of made me feel less like an absolute nutter!
I also was diagnosed 2020 (February), 1st post treatment mammogram was clear and I was told officially I showed no evidence of disease, from that moment for a fleeting second I felt almost relief and by the time I got to the car park it was as though someone set a stopwatch or timer on my life. In March of that year I had a complex abscess in the breast where cancer was and despite removal this hasn’t healed and I now face a mastectomy as despite several operations my tissue will not heal, I’m still regularly reassured by all of these medical people that there is no cancer, but I’m so disappointed that one thing I promised myself I would do after treatment was live in the moment for the moment, I suppose pandemic hasn’t helped but it just feels like constantly anticipating the next appointment and it fills me with such pain and emotional anxiety. Sorry I’ve not been much help but know your not alone x
I totally agree - you have to learn to love the person you have become. So true. Keep at it…….I think with time you will hopefully learn to love the face you are looking at in the mirror. Maybe also try some yoga mantras…….it’s all a bit who hoo hooey but sometimes reminding ourselves we are strong or we love ourselves, etc really helps.
@Bellis Coldwine oh yes, I can see how it seems like one never ending thing. It’s unfortunate that the timing was so. At some point, we will all start living more normally again. I like to put a positive spin on negative things but the pandemic and cancer are two things where I struggle to do so. I therefore try to put the cancer thing to one side and not let it be the controller of my mind. For a long time, it stayed next to me and was always present but now I feel I‘m able to have it behind my back and it follows me rather than accompanies me. Not sure if this makes sense or is of any help but the mind is such an incredible powerful thing and if we can manipulate it, it can be an enormous help.
what are you crafting Poppy? My sister sometimes does craft fares - such a great idea if I you are crafty! I love doing a bit of craft stuff but sadly have limited talent 🙂
Really interested in your poetry. Have you published before?
Thanks @Jill1998, you're always such a whizz with posting links. That's a much longer more detailed version of the link. I've now found the shorter one - must save it in my downloads file this time, to save me always searching it out again.
I know Poppy's already read it, but to all you other girls who haven't, do have a read. You may find it very helpful. Thank @Jaybro/Jan for it (Hope you're doing okay Jan xxx)
Err, was your mentioning "Poopy" related to me saying I was "pooped", as in TIRED (so not a ref to poo??!!🤣 x❤️x
I had a card from a friend (which she insists was a slip of the pen) Keep strong Poopy.
Yes, we are still friends.
My treatment also coincided with the lockdown my chemo started in Sept 2020 followed by surgery and rads.
Cannot say I link the two together in many ways it made me sort of feel safe, as it meant no one was allowed to come knocking on the door and the hospital along with all of my treatment was absolutely fantastic and I kept strictly to the lockdown rules (no parties)😁 and as there are only 5 houses in the hamlet I live in there was NO chance of seeing anyone.
I did the whole thing totally alone, even down to changing my own bag after surgery, I am tough (or I was) I have lived alone for 15 years, that is how I know the way I am feeling at the moment is more than me feeling sorry for myself (I think some of it might be down to Letrozole which can make you feel depressed).
The thing is there is NO way anyone can know how it will affect you until you are stuck in the middle of it all, even when speaking to the docs and nurses (yes they are re-assuring) but they cannot know what is going on inside our mind, not even friends and family can put themselves in our shoes, only people who have been there can see what we are going through and understand the full fallout process.
Moving on, yes we have to or what is the point of all the treatment we have gone through but I think you have to learn to like and be able to love the person cancer has made you become. I feel for myself I have not reached that stage yet, I look in the mirror and still do not see a face I recognise it is still a strangers face that looks back at me - not in terms of image - but in acceptance of who I now am.
Big Hugs to all may we all find and keep our happy place.
This is the article Delly is referring to .
I think I need to try to move myself away from the mindset of 'Once everything has been Officially Declared OK, I can come off high alert and live normally again'. I know that's never going to happen with cancer, and of course it does't happen with the rest of your life either - you can't just Get Everything Perfect. One of the problems for me has been that my diagnosis has exactly, and I mean exactly, coincided with the pandemic. I was diagnosed on March 11th 2020, which was the day the pandemic was declared, and I had my biopsy results on March 24th which was the first day of lockdown. The two have got intertwined in my head I think and cancer and lockdowns have turned into one neverending event.
Sorry. Couldn't find my post below after pressed post. Thought it'd got lost and posted again here. Then my previous one appeared, so deleted this one but didn't want to leave a blank post - if you understand all that!! X
@Bellis Coldwine - YEY !!!!! That's brill news on your scans, darlin. I'm so pleased for you and glad you let us/everybody know, as I had been wondering.
I must remember to give you a link to the excellent article about after treatment ends, that Jaybro introduced us to on here. That's if I can find it again from previous posts. Unless Poppy may also be able to access it again and post it.
@Eglis, @Susanmanchester, and @Guest user - Forgive me, haven't yet read and caught up on all your posts, and it's now a looney 2.37am, and am off to bobies now so shall catch up on you all tomorrow.
Good to see you again too, Poppy flower. Am pooped, Pops(!!😊) catch you tomorrow.
Nighty night girls. Hopefully you're having/had a good restful sleep and sweet and peaceful dreams. Loadsa love, Delly xX❤️Xx
I love your reply so honest as well as uplifting.
You might be pleased to read that at the moment I am in my lovely warm bed, TV on, Mr Pumpkin curled up at the bottom of the bed, as well as doing some braiding craftwork (me that is) not Pumpkin, I have a small craft fair pending, so getting my act together again on that score.
I am a firm believer in switching off and allowing the mind and body to drift into more relaxed, happier places. I have also started to send my poetry out again for possible publication - trying very hard to take a positive step forward.
I do agree with the comments about more trips to the hospital does bring it all back again, though I have to say on that score I was very lucky outside the MRI scans which I hated.
Yes, only 'we' can get ourselves back on track it has been a massive learning curve, not only dealing with the diagnosis but getting used to the new 'me' accepting I am not and never will be that same person again, that for me comes more from the hormone tabs and the effect they have on the old body.
Off to use some of my new lovely wool...
Thank you so much for your kind, supportive and honest post - means a lot.
Lots of hugs
Poppy and Pumpkin
Your messages touched a cord with me. Totally understand all the comments. At my last check up and first check since the ending of my treatment, I felt I relived part of that beginning journey....the anxiety of cancer returning when I didn't feel mentally ready to cope with it again. Thankfully all was good. I'm sure, however calm I think and try to be, my next appointment (looming) will make the same anxieties/worries resurface.
I do sometimes wonder why......why were we so unlucky..... but something keeps me going on. I had a long 'numb' period which sounds pretty much where you are both at Poppy and susanmanchester. It takes time. I try to focus on doing something nice for myself or making sure I am doing things that I enjoy.
Ultimately I have taken the approach, the only person who can help me is myself and if I make myself feel good, whether it be reading an engrossing story, watching a film,doing something that makes me laugh, doing yoga or sport or walking and enjoying the nature, then I make something inside me much stronger and this helps to keep carrying me along. There are many wonderful things around us but sometimes we get a bit lost in ourselves and find it hard to see these wonders.
I am trying hard to convince myself that the six monthly checks are a positive thing because they ensure cancer is kept away and ensure I stay healthy and therefore I should welcome them rather than fear them. Let's see how much I have managed to convince/brainwash myself when I have my next check.
big hugs to all....... it's good to share - Poppy you said you are unable to with friends and family.....use your. Breastcancernow family instead to share - we are here for you as you are also here for us!
So lovely to read your comments again Delly...
I think what worries me is knowing that I cannot access a GP they, if I do try to contact them (once I have been vetted by the receptionist) tell me to contact the people who are dealing with my treatment at the hospital, (and yes in a perfect world) not this mess we are in at the moment - are almost impossible to speak to, so you are referred back to the breast care nurse.
I am not moaning in any way shape or form about the treatment I have received, and YES I do realise how lucky I have been, but that does not take away the worry does it? Maybe some of you have friends and family who can help talk things through with you - I do not.
As lovely as Cumbria is we also have very few services that are available.
To those who maybe think I am complaining, believe me, I am not a 'pity pot' moaner, but we all reach our level of rock bottom.
Delly are you still feeding the feathered brigade, I have Jays and woodpeckers visiting the buffet at the moment
Pumpkin and gang well, fast asleep at the moment keeping warm😁
Lots of Hugs and love
While it is not the 'end' or the 'solution' (because my original post was more about the perpetual uncertainty we find ourselves in) I did want to post up to say that the bone scan was clear, as I realise that other people waiting for results will be reading posts like these and wondering what happened to the poster can add to people's anxiety. Good thoughts to everyone reading these forums and waiting.
I always think it is like PTSD with these appointments you get triggered and have to return to the scene where you were told you had cancer. I find it traumatic and it is three years on . So my sympathies entirely it is tough but we have no choice but to try and not dwell on things and always remember just how lucky we are to have been diagnosed early. Many women never get the chance to move on or even think about it . Take care all x
Hi @Bellis Coldwine and @Guest user (Hi Pops me dear)
I'm so sorry to hear you're both struggling so much. All the appointments are a constant reminder and a pig poke and a pain aren't they. I do empathise with you both. Took me until being "signed off" at final 5th annual check to finally move on.
I don't know how things currently stand with Covid on such, but have either of you been on, or considered a "Moving On" course. I've always heard such good things about them from other Forum members attending them. They may not be running at the moment of course (in person), but may be available on line?? Just a suggestion. Or perhaps asking your BCN/onco team, GP, if you could be referred for some counselling?? Or I'm sure the nurses on here would be able to advise what you could do and available courses.
Hope you can find something to help. x❤️x
I get this - I really do I am also living in limbo-land.
It's not so much that I think about cancer (as I don't) I, just drift from day to day waiting for the next telephone call from an oncologist, surgeon or my 1st mammogram this month after my treatment.
I truly believed that the treatment for my breast cancer would be as bad as it can get - but that for me, was the easy part - it has and is the aftercare (or lack of) putting any pain to the back of my mind, coping with the medication side effects, putting on that 'I am ok face' because I refuse to let cancer have house room.
Yes, cancer robs you of so much I get that bit - but I am finding it is the after fallout that leaves the most lasting concerns.
Friends do not help as they assume the end of 'treatment' cancer and worries ALL gone.
I used to be so lively, so active these days I feel lost and empty I like you, am trying really hard to discover myself again I hope it happens soon.
Thinking of you and massive hugs
I am nearly two years on from my diagnosis (March 2020). I will have a mammogram check in March and I am currently waiting for the results of a bone scan (the surgeon said she thought it would be OK, but best to check - but she would say that, wouldn't she ...). Even if the bone scan is fine, I'll have to do all this again, waiting for the appointment, waiting for the result, in six weeks' time. I am always thinking if I can just 'get through' this appointment, then 'get through' February, then 'get through' March ... and this is my actual life that is ticking by ... Even if the bone scan and the mammogram are clear, I'm always just waiting, ticking off months in which nothing bad happens. It would have helped, of course, if the pandemic hadn't been happening, because I could have gone on a holiday to mark the end of treatment, but I feel like I'm stuck in the same limbo I've been in since my diagnosis, waiting for real life to restart. I don't feel that I am moving forward from my diagnosis, because I feel like each month that goes by is *more* likely to be the one where I have a recurrence. Of course you wouldn't have a recurrence literally straight after your treatment, but one year after, two years after ... I feel like the diagnosis is closing in on me rather than me moving away from it.