Bless you, hope all goes very well for you. One of my BC nurses is retiring Friday and we having a get together, will mention the lump to her, like you say whatever it is, I will sleep better in the end. Sending hugs.
Thank you old spice60. I know I will get there and the uncertainty and fear will lesson. I don't want to be worried about aches and pains. I had a recent scan as had a lump on chest but it was a harmless cyst. Now I have a lump on my neck, am scared to go to get it checked, not for fear of what it could be but for fear they will think i’m being a neurotic pain in the ass! You take care, sending hugs. X
Thank you oldspice60 for quoting from the Joni Mitchell song. I Googled it and thought it was beautiful.
Sending you big hugs. Take care,
Hi Lisa, I can't add anything really mind blowing or ground breaking but as everyone else has commented the raw fear lessens over time and I have learned to accept weird new aches and pains with rationality: they come and then they go, as they did before my diagnosis and I accept it now. Trigger words definitely bring on anxiety or depression, I have Asperger's syndrome so the uncertainty even with a less serious diagnosis and good prognosis can freak me out sometimes. I think Joni Mitchell sums it up perfectly in her song I Think I Understand - ' Today I am not prey to dark uncertainty.... Forgetting fear but never disregarding her.'
Thanks Lucy, just have to wait, it’s like that’s all we are doing now, I just keep telling myself its out of me, its out of me, but it still doesn't detract from how I feel when look in mirror, I know where you are coming from and you are certainly not alone in this. It’s funny though because sometimes I feel alone yet I know I am not. Wish I could wave that wand, but reading replies on here is good for me and I hope for you too, some good thoughts and ideas. Sending you gentle hugs. X Lisa
thank you for your lovely reply. I'm glad you've found what has helped you feel good about you again.
Ive found it all difficult but take note of what you've said and how good things are now 5 years on. I hope that continues for you,
Hi Lisa and Lucy,
You both mentioned you are waiting for reconstructive surgery and I hope this will make a difference to how you feel....
Warning! Another reassuring post coming on!
In my experience besides the time factor, the reconstruction can make a huge difference for some of us. While I didn't have a mastectomy I ended up extremely wonky after lumpectomy, and had what I was told was an extremely rare allergic or skin reaction to the prosthesis, so went around wonky wearing loose tops, or choosing tops which distracted from the wonkyness (loose wrap tops also worked quite well). However, for me (and we are all different) I found it quite uncomfortable and my shoulders started being at different levels.
I decided to have a reduction of the bigger side thinking it might help re the shoulder issues and just feel more comfortable. (My partner was a good sounding board for how I seemed to feel about myself. It wasn't something I had initially thought of having.)
So, first reduction 2.5 years after bc op, and another to remove more at 3.5 years after bc op. For me, and as I say we are all different, it made so much difference about how I felt, comfortwise, shoulderwise, bending over when camping (early in the morning)! Far greater difference than I would have imagined, albeit the number of years since diagnosis was also passing. My partner also noticed a change in how I seemed to feel about myself generally.
Just after my 5 year anniversary my partner made 2 observation comments....that I had zipped around a hilly coastal walk (one which I was much slower at a year or so after active treatment) and that since having breast cancer I had only been wearing black! Adding I used to wear colour!
He was right, I don't know quite how that happened, it may have been a combo of putting a bit of weight on with Tamoxifen (and not wanting to buy loads more clothes) or a bit of not caring as much (I found one type of top which covered all, soft, cotton, cheap, black and just bought loads of them and that with black jeans almost became my uniform...for 5 years!)
So I am currently getting a bit of colour back! Ochre cord and velvet is good! Funny it hadn't really occurred to me but was so true!
So, keep going, one day at a time, be kind to yourselves, enjoy the journey, (and at the risk of sounding like a hippy) take time to really listen to the birds, really see the autumn colours, smell the flowers, and of course while there are no guarantees, there are loads of women who do get to a new normal. Don't underestimate how both time and any reconstructive surgery (if that is what you decide is right for you) can help you feel better about yourself and your world.
Seabreeze (5 years on)
Hey there, just noticed everyone who as replied as got a snazzy name n I just used my normal one! Gonna av to change that 🤣. Your right of course - which camp do I and others want to be in, like what the nurse said. Going to make me think. Have read that piece, got it in a Moving Forward pack, it was quite powerful. Still, i’m worried but am hoping to manage it better. Work, grandchildren and my holidays should help! Take care of you and sending you hugs. X
I’ve just noticed your post. Wow, I’m impressed with all that you’ve achieved - I was flat out like a zombie a lot of the time and fortunately retired as I could never have worked. I seriously am impressed. I also really feel for you; after being at the beck and call of oncology for so long, there’s a kind of security - then they whip it away from you and you have to find your own way through the minefield that follows.
I’m facing the same emotional conflict right now. Two things are really helping me (though not eliminating all the fear as it’s early days). First, my breast care nurse said I had these options: the camp that says Yes, it’s going to come back; the camp that says No, it’s not going to come back; jumping between the two camps according to mood; or the camp that says Who knows? and just enjoys the camping. I’m opting for the last. Statistically there’s a strong chance, but that’s statistics for you. Given a 50% chance of recurrence would mean an equal chance of it never coming back but you can bet your bottom dollar we’d all feel scared and miserable waiting for it to come back. Why? We can’t do much about it.
The second thing that’s helped is something I’ve asked the site moderators to make more easily accessible (a section - useful reading). It was posted by one of the nurses here in a reply and I’m just reposting it where I can. I read it every day still to keep me grounded. This bloke really gets what’s scaring me: http://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what...
I hope it resonates with you too. OK, it’s just talk but he does know what he’s talking about.
All the very best,
Thank you... still haven’t cried either... guessing it will probably come at the most inconvenient time, probably NYE... thank you so much, it’s great to know you’re not alone feeling like this, however it’s not nice for anyone to feel this way/worry xx
Hi Seabreeze, thanks for that. Am sure it is only a matter of time. Its great you are five years on and okay. Just not seeing an end to it at the moment with my recon being put back but i respect those who have it in them are priority of course so I just have to wait my turn. I hate my body, it just reminds me everyday. That said my family say the scars show how brave I have been and they are a part of me. I hope you stay well. Sending hugs. X
Hi Lisa and others who have posted about worry,
I just wanted to say that the worry about risk of recurrence is natural, however the fear does gradually fade with time. I'm not saying it ever totally leaves, but given the risk diminishes as time goes on, and we have time to take it all in, it does get easier.
Seabreeze (5 years on and doing ok) xxx
Bless you Maggi, its so early for you. What you are feeling is normal. I saw a counsellor a couple of times, for me it didn't do anything but I know other people have said it worked for them. If you feel up to it give them a try. I wish I could just give you a physical hug. I could cry for you and others facing all this. But, I never cried myself. Just scared. It must be a normal reaction if lots of us feel like this. You are not alone. I am thinking of you and sending you hugs. If you ever need to chat... xx
Hi Bolly, am sending you some hugs, you are right the fear is worse, I went through the chemo, radio, operations etc in the system and everything was go, go,go, guess now I am able to think and reflect, especially after oncologist said couldn't give me all clear, is when the fear is at its worse. Am sorry you are still very tired, or rather fatigued, that can take a long while, I get frustrated because I cannot do what I could before. Wish I could wave a magic wand for you and everyone else going through this but I cant, like you say we need to do a bit at a time. Wishing you all the best and sending hugs. Xx
Hi Delly, thank you for your message. I am usually a positive person and was positive throughout. It was just hearing those words, I cant give you the all clear... I have even been out and got a pack from local funeral home to complete in case it comes back so all in order - how daft is that, not like me at all! I don't tell anyone all this, maybe that is a problem in itself, but I do write, have now got up to 87,000 plus words about my experience, so guess it helps a little bit. I did see a counsellor twice but sorry to say it wasn't for me at all, but will think about what you said re someone like me.
You never mentioned your experience, so whatever that may be I sincerely hope you are well and sending you hugs. Xx
I’m 2 months after double mastectomy and lymph node, felt good til yesterday when I got scared that it’s come back... don’t quite know how to deal with it as I was very positive throughout chemo and surgery. I’m very swollen and tight around mastectomy area... hope you feel better soon and we both stop worrying 💖
I know what you mean and I'm exactly the same.It will be 2 years since my Mastectomy on Nov 21st.I had 4 weeks of Radiotherapy after that and had 5 months of Chemo before my surgery.I then had months of therapy appointments and am still having check ups and 6monthly appointments on Oncology day case for calcium infusions.I feel a lot better and my energy is coming back but I suffer with fatigue and bone pain and every single day I worry about cancer coming back.I think your body never really recovers from all the treatment and there are days when I'm more scared now than I was when I was originally diagnosed!!! I think I feel that there is always something stood behind you and you are constantly looking over your shoulder.I had terrible Indigestion yesterday and was having a day of my back aching as well,I couldn't sleep last night for thinking the cancer had come back and was so stressed.I think you have to try and do a bit at a time,try and distract yourself and not let the fear suffocate you,easier said than done,I know!! Look after yourself and dont panic. I KNOW what it feels like.The fear is worse than the cancer.Im thinking of you and sending lots of love xxx
I'm so sorry you're feeling this way. You must feel worse, exactly because, as you said, your oncologist "couldn't" give you the "all clear" - so nothing's definite. Plus that you can't check yourself out physically either. So I'm not surprised you feel this way, must feel like you're in limbo land.
You went through all the afore with such positivity, expecting to be clear from it.
Sorry I can't come up with any suggestions to help, Lisa. I feel quite useless for you, but didn't just want to pass your post by, and wanted to wish you well with it all. But I hope someone else can and does.
Have you thought to contact the helpline on here - "Someone Like Me" to discuss your fears with? Maybe they can help and offer suggestions.
I hope you stay and keep well, and can find something to curb your fears.
Lots of love to you
Cant understand why I seem to be so upset now and more worried than I was after being diagnosed. March 2018 was diagnosed and since then had chemo, radio, double mastectomy. Have had one boob reconstructed using flap (original plan of two implants went out the window after right boob damaged by radiotherapy). Am still awaiting left reconstruction was told this would be next year now. All invasive treatment over including my 18 Herceptin jabs every three weeks. Getting my life back on track, still working and worked throughout (shorter hours), apart from after operations. So, why, when met with oncologist for the last time do I feel scared it will come back. He said that he cant give me the all clear, as I had two different cancers, both hormonal? but the tablets, Letrozole will help keep at bay am hoping. Taking them for ten years and some tablets for my bones. I wont get a follow up each year as was originally told, I am now empowered to check myself since going on the Moving Forward course. As I have no boobs I can hardly be called for a mammogram. I just seem to be less positive now than I was before. Am scared it will come back. Is this normal, am worried I cant check myself sufficiently.