I agree with you wholeheartedly. Perhaps they should give a copy of it to anyone having to go through BC, so that people are more prepared, know more what to expect. Can help themselves more.
Lots of love, Delly xxxx
Sorry for delay in replying to this.
Downloaded and read the article and it was brilliant - thank you so much.
It is like someone is actually telling you exactly how you feel.
I think the missing trick here is perhaps being giving some more upfront info on how you might feel when it all ends instead of reaching the end, hitting the dip and then having to dig yourself out of it.
Those 3 words 'we found cancer' really does change your life forever.
Stay safe all - Covid isn't going away either.
I don’t know why I didn’t think to give you this link yesterday. It was originally posted on here by a nurse but hasn’t found a permanent home so it gets lost. I hope you’ll find it as empathic and helpful as I did :
All the best xx
Thank you everyone for your honest answers - which I knew I would get.
I so find this forum invaluable and also a lady called Susan posted on Facebook on Breast Cancer Now her story yesterday about people expecting us to all be 'normal' once treatment was over and it was like reading my own thoughts.
Yesterday in the end - the year to diagnosis, I managed to keep busy - nice walk and a social distanced catch up with a very very close friend to finish off the Xmas holiday as I return to work today but felt restless on and off during the day.
I will continue to dip in and out of the forum and chip in where I think I can help and am hoping too to become a Someone Like Me volunteer.
Love to you all
Thank you Susan - I too have mild lymphodema which is under control but just something else to contend with and as you say a daily reminder.
Lou - Congratulations on your 1st year clear.
Yeh, I totally understand. Took me until my 5th yearly check up (masts 2006 and 2007 with full node clearance) to feel "safe ('ish"!), and give a big "Whoopee", do a bit of couldn't care less how silly dancin!!! (You'd have to see me to appreciate that one 🤣). From that moment on, I found any BC fears and doubts went from often being at the FRONT of my mind, to being gradually pushed to the BACK of my mind, and "shrinking" in size. You stop "worrying", which can be so draining of important mental energy and strength you can put to better use.
Chrissie - Mine were at least a year apart, so you, a double mastectomy? Jeeez, I so get you on that. Have you contemplated reconstruction?? We're all so different how we deal and cope with the after "look" so to speak. Some women don't mind being flat, which I applaud. But I didn't cope well at all after losing my second. Made a big difference still having one. I'd wanted "immediate" recon with both, as I knew it would affect me badly, but it didn't happen due to a number of things. Took me 7yrs to finally embark on, now a very delayed, recon as it kept being put on hold due to other major life trauma/losses, brown stuff. Finally set the wheels in motion, 2014 (at 55yrs,) for double implant recon. Am still at expander stage, but I'm not finished due to other illness getting in the way. It's a longish process from "nothing", in the no. of appointments sense, but only a year in all from expanders, perm silicons, nipple recon, to the final icing on the cake icing (or should that be icing on the boobs!! 😊) with areolar tattooing. But I have to say . . . just having the expanders installed and then 3 inflation stages, I felt an immediate lift/boost in my confidence and self. Bloody marvellous in fact. Felt I'd got my old body and. . . . some of my old "mojo" back too. Didn't want self tissue ones due to the extra scars on body and boob area, plus extra healing time/infection risks. If you're struggling so much with your appearance, I'd recommend recon, if it's possible.
Suzanne - I've read many women say how difficult lymphoedema is. Does daily massaging it help at all?
Jaybro - My darlin' woman, you and I have met so many times on this here wonderful forum. You're posts are always such an inspiration. You have a good rant ANY time. You deserve to, considering what a tough time you've been through. I'm sooo sorry to hear you're still having problems. xxx
Lots of love to everyone,
Congratulations on your anniversary. I think that’s why I felt so angry when some of the government used a neat soundbite of “new normal” in relation to COVID-19. I felt it had been stolen from me when it was so meaningful. The fact is, it must be a very rare woman who can honestly say she has returned to a life no different from before!
I was diagnosed over 4 weeks in Autumn 2018. It just kept getting worse. I had my first chemo that Christmas Eve and, on Boxing Day, I started my blog. I called it “It’s only a disease” and I do still believe it - it’s not the death sentence we dread. However, experience and time have led me to think I should have gone for something like “Adopting a new lifestyle.” It’s 18 months since I finished treatment, yet my whole body is riddled with side effects from chemo and hormone therapy (yes, some too from radiotherapy that I found a doddle). Every time I mention something slightly different, I get packed off for more tests or to see another specialist! Today was for two MRIs, fortunately just shoulders up but still 70 minutes in that machine - one department wanted just an image, oncology wanted the same but with contrast dye!!
I never wanted to ring the bell - I knew it wasn’t over. It seems endless, we have HT to remind us, let alone our scars and extra treatments like zometa, and we have a sword of Damocles hanging over us that only a fortunate few (myself included, until recently) can put in a box and ‘forget’ about. I guess that aspect of living with fearful possibilities improves with time? It’s something you need to work at, getting the experience into perspective and moving on. ‘New Normal’ covered it beautifully - no it’s a cheap soundbite for inconveniences like sitting spaced out round a pub table or having to step back to avoid crossing one’s path (not quite what we had to go through).
I wish you all the best. Give it time, have the experiences of a few clear mammograms, and you’ll find it brings a different perspective on life.
Jan xx (I had a rant about the new normal a while ago lol)
Diagnosed Dec 2018 so two years now and coming up to mammogram time so the anxiety and fear is back . It really is hard and people do not get it my thoughts with you . I also have mild lymphodoema which is a daily reminder as of course is altered shape. I think lockdown has amplified things and given us way too much time to brood
I know exactly how you feel. It was September 2019 when I was diagnosed. Double mastectomy October then lymph node clearance in November. Chemo December to March. Then having to deal with lockdowns due to Covid-19 and not being able to get back to some normality. It gives you more time on your hands to sit around thinking. I also find it difficult to move on. I also feel like I keep letting work down because I have to isolate due to being vulnerable. I am struggling with my new normal, new shape, white hair, I want to colour my hair my family love it but I can't get used to it, just another thing to overcome. I have lost my confidence the only place I have been by myself is work. I struggle going out alone. I feel so strange with a new shaped body, I wear prosthetics but feel uncomfortable. Because my treatment is finished everyone else thinks its all over and that I'm okay. I do try to just get on with it but its not easy. My 4 grandchildren are all under 3 and after seeing them I feel totally worn out. Unless we've been through this no one understands and they just expect you to get on with it. But its not that easy.
Happy Sunday, a very happy and healthy new year.
very well, done for getting this far, unfortunately I think many of us on this site, understand only to well how you are feeling, you have been through a lot in the passed year, after treatment we all wait for good news and find it hard to accept. I know I feel just the same, it’s easy for some to say move on, I always say one day at a time.
Wishing you lots of love, health, and happiness. Tili x
Tomorrow will be a year to when I was told ‘we found cancer’ and my world was turned upside down.
After chemo, surgery and lymph removal and radiotherapy, I am cancer free but I cant quite jump for joy or accept it.
Almost feels surreal.
Anyone understand this?