My dear Treeze - Goodness - you are soo welcome.
I still shed tears. It's only natural and important to. I sooo understand what you say about reminders. Be they smells, music, places, all sorts of things that spark off memories. Please bear it in mind, that no-one, at such a time of traumatic loss, can expect you to "hold it together". Don't ever think it a sign of weakness - it's actually a sign of just how much you loved and cared about your Dad, that person. The more you love - the more you grieve for their loss.
I also still laugh at many shared memories, the daft things I shared with them. Equally as important and all part of.
You really and truely are in my thoughts and heart at such an awfully upsetting time. Hope you can and do bring out some of the "joyful", humourous side of your Dad at his funeral, and that it gives you some comfort to do so.
Much love to you and everyone else here
Delly, that is a lovely piece of writing, I've copied and pasted it to save to file. Words are hards to find sometimes arent they, so having some ready can always help.
My Dear Treeze, I don't know if you've yet had your Dads funeral. I read these words at my Dad's, Mum's and bruvs funerals, and it's really helped me, in my own current state, to revisit them again. Hope they give you some comfort, dear friend.
"I am so sorry for your loss"
A loved one is a treasure of the heart, and losing a loved one is like losing a piece of yourself. But, the love that this person brought you did not leave, for the essence of the soul lingers.
It cannot escape your heart, for it has been there forever.
Cling to the memories and let them find their way to heal you.
The love, the laughter, the joy in the togetherness you shared, will make you strong.
You'll come to realise that your time together, no matter how long, was meant to be, and that you were blessed to have such a precious gift of love in your life.
Keep your heart beating with the loving memories, and trust in your faith to guide you through.
Know that, though life moves on, the beauty of their love stays behind to surround and embrace you.
Your loved one has left you that . . . to hold in your heart forever. (Debbie Peddle)
Much love to you and all others who are also grieving.
Oh, flippin 'eck Treeze. Jeeez, have just caught up on another post that you lost your Dad Ooooh, my darlin girl. I can't tell you how sad and upset I am to hear that. Am choked up for your loss. You must be feeling totally and absolutely gutted and distraught. Can't find the right words. There was me trying to gee you up with suggestions for when he'd recovered - so sorry. Tragic. That's on top of what you're going through yourself. Gonna have to break off for a while xxxx
Treeze - I think I'm with you on that. In that it's something we can't ever control, so just have to take it it, "if and when" it should - Yeh ??
I like your 'go forward with confidence...' quote Delly. It s tough isn't it, you / we could spend the next 10 years fretting for nothing. So, I'm trying SO hard to adopt the attitude that there's little point in worrying abOut something that a) may never happen and b) I can't do anything about APART from be vigilant.
Yep, couldn't agree with you more, Kiki, in the need to "connect" with fellow experienced women, when the need arises or even doesn't, but we have our fears of it doing. On here, we can have a heart to heart exchange of notes and can actually "empathetically" support, as opposed to "sympathetic", because we've actually shared and experienced the same - that's soooo invaluable.
Listen - any of you who keep thinking it IS going to RETURN, please stop it. Yes, it may very well do, and we have to be "sensibly" aware that it "can/could".BUT, if you have any concerns about pains, wherever they are in your bod, go get them checked out. This is what I keep referring to in my repeated use of the phrase, "Remain Vigilant" - Just go get it checked. But please stop "imagining" the WORST, before anything may even have developed!! If there is ANY sort of concern or doubt . . with "owt" (note the clever rhyming - I'm desperately "trying" to make light here!! ), before you've even had anything further checked - do please try not to worry.
I may be lucky, in the fact that my doc, is with me, in being very conscientiously aware, of any secondary possibilties with me. But they do sometimes need to be kept reminded!
Worrying about something physical, without being sure or certain of what it IS, and what you THINK it could be, is such a waste of energy that could be put to faaar more productive use to yourself.
Reading your posts really echoes the thoughts that I have had too in my darker moments. I am two years post op now, (DCIS, mx with immediate recon and tamoxifen) and I have found that on the whole my whittling has decreased and only peaks at times of mammogram or other tests. I think more than anything it has changed my perspective on life, I have reduced my working week to two days. (Lucky enough to be able to afford to do that) which has given me a better work/life balance and I have been on and planned some great holidays, determined to see the world and not wait till I retire just in case! I have been lucky with the tamoxifen in that it hasn't caused me painful side effects, but it did cause womb thickening which led to a stressful round of tests last summer, thankfully clear. I think maybe at the back of my mind I do expect the cancer to return one day, certainly the fear is always there, which is why I don't want to put things off but hopefully, if I've beaten it once I could do so again. Certainly for the first year I know I thought about it every day, but occasionally now I stop and realise I haven't thought about it for a while. Having the recon of course is a constant reminder. I still find using this forum, or talking to friends who have had BC the biggest help because you feel you can't burden friends and family with your worries once everything is "normal" (even though we know it never is). Best wishes to you all, Nic xx
Evening Ladies, from another 10 yearer.
I'm with Roadrunner's not allowing it to rule or run your life. I'm with Butterfly with use of the word vigilant in the being aware sense.
I have other probs, mental and physical health wise, but as far as BC goes, someone gave me these words years ago and they stuck - "Go forward with confidence and deal with more, as and when you need to".
Love to everyone and have a good weekend.
Thanks for that Rubycat. Very similar here with Ostepenia. Had a Dexa May 2015 at that time i'd been on Tamoxifen 2 years (even though i was already post menopausal) and was changing to Letrazole. I know this is unusual but my Consultant was pretty insistant on this treatment route, even though not strictly NICE Guidelines. Some spinal deterioration 1/2 are moderate to severe deterioration and 5/6 mild to moderate. I'm having a Naproxen free period..... Will consider Amitryptyline. Thanks for the information. It is reassuring to have a supportive GP.
Take Care Butterfly. x
Hello Butterfly - hooray, at last some things I know the answer to!! My back pain appears to be due to osteoarthritis which was found on x-ray. I also had an isotope bone scan, which showed something 'likely benign' - blimming hope so. This was because I'd had continual back ache for months & Doc wanted 'to put my mind at rest', bless her! Had convinced myself I had bone secondaries, so very grateful it was just the arthritis. I've seen a physio, and going to a Back Clinic, so am now doing back exercises - which actually do seem to help with lessening the pain. I did have some Naproxen when my back completely went and I could hardly walk, or crawl. I try to take the minimum Ibruprofen. Doc has also referred me to Orthopaedics, and I have an appointment next week, so will see what they say. For the first two weeks that I took one tablet (10mg) Amitryptiline at night I found I was out like a light (something that never happened) and if I had to get up to the loo, then I fell asleep again really quickly. Hmmm, these last 3 nights I have been lying awake feeling ouchy, so not sure whether to increase to 2 tabs - doc did say 1or 2, but might give it a couple more nights. So, would recommend the amitryptiline, trying to keep on minimum doseage, as a good night's sleep is a wonderful feeling! Going for my 2nd DEXA scan in May, first one showed Osteopenia, so wonder what the wonderful anastrozole has done to that!! (I take Adcal d3 too). Have wittered on, so if you try the amit, let me know how you get on, and do hope it helps you.xxx
So glad it's helpful to know how things are for others. I really try not not to use medication except Letrazole and AdcalD. Prescribed Naproxen for the joint pain. Rubycat can i ask do you know what is causing your back pain.
I am currently having abreak from Naproxen but really struggling with poor sleep and pain in feet / legs from Peripheral Neuropathy. My GP regularly suggests Amitryptylene, do you mind me asking what dose you are on.
Thank you so much for all your meaningful replies, and I'm listening and acting on them. I know I tend to feel down when my back hurts too much and I can't do my normal things, but (touching wood), aches and pains have disappeared, so I do feel so much more positive and able to cope. That has been due to my lovely Doc listening to me, sorting out back x-rays etc, physiotherapy and now amitryptiline (which has given me sleep, ahh, not had that for months). I have my 2nd mammo coming up, and I will not be fretting as I did last year. I'm going forward and not going to let the 'what ifs' dominate . Onwards and upwards, but thank you so much.xxx
Butterfly and roadrunner, thank you both so much for taking the time to reply. You've both provided some very constructive mental approaches, and lots to think about there. Of course, thats the point isn't it, what we want to hear is that 'theres nothing there, adn won't be ever again', but nobody in this world ever has that guarantee, me, you or people we pass in the street. I will read your replies over again, as they merit careful re-reading. Thanks so much again, it does much such a difference.
Thank you from the bottom of my heart, I have been struggling the last couple of days but not really knowing why, and this is very unusual for me because throughout my journey, as a lot of you know, I have been very upbeat and positive. I have been reading all your posts, especially Butterfly, and I actually feel sooooo much better, I feel as if a cloud has lifted today because I think that it is perhaps, even though my Oncologist told me I was cancer free, what I have been feeling is this fear of it returning.
I am only 6 months post diagnosis so have yet to go through the potential anxieties of that first mammogram etc., but I know with the support of you all I will get through that part and move on again
I have made some very special "friends" on here, and the support throughout the time I have been on here has been absolutely second to none.
Dear Rubycat and Charys
I'm not sure who it was said, many years ago, The answer is always in the question and definately in your posts you are answering some of your questions. Road Runner thanks for posting and great to know you ae doing so well.
I was diagnosed is 2012 Chemo, surgery and Radiotherapy. Reconstruction which is needing to be done again differently, probably taken from stomach (trade name evades me...).
I am Clinical Nurse Specialist in Psychiatry with Degree in Psycho Social Interventions In Psychosis.... Just means i like to work with a combination of Medication and Psychological approach.... Been flogging them therapies and counselling for years...
I fully expected to be fine in the aftermath. In truth i could not have anticipated the number of decisions we have to make ourselves and the uncertainty of reassurance (or in reality that there are no guarantees in this life : whether you've had Breast Cancer or not).
As Road Runner says it does very gradually get better, stops becoming an all consuming thought. I does raise it's ugly head though even now. I have great GP's and i am going for a chest xray this week, last one was 18 months ago. It was a locum and he looked back at my records and could clearly identify that my visits with background worry about recurrance were getting further apart which was reassuring.
He asked me what it was i wanted and I was very clear that i wanted a blood test, a full picture of my body inside and a cast iron guarantee that it is not going to come back...... He said OK we're gonna have to find some middle ground 'cos you know that's not possible.
I've had this recurring Viral infection that lots of people have had over the winter, bad cough, tonsillitis, laryngittis, flu symptoms and aches and pains. This is the first time i can ever remember getting in bed for a couple of days feeling ill in my life. So of course i think is it something else...
I am pleased to say that for a lot of the time i am able to get on with life and not worry too much. However i have done everything i can to support that and continue to do so. Take Letrazole (2 years on Tamoxifen and then two years on Letrazole (6 years of joint pain and hobbling around to go) I have done every therapy known to man... CBT CAT Person centred counselling i have been to BCC moving forward course and attended a number of residentials. We have a Local Cancer Care Charity where i also had Reiki which was incredibly helpful particularly in the small hours where my mind takes on a whole new life.... I Continue to practice Mindfulness most days and definately at stressful times. I eat well, walk loads and swim a good few mornings each week.
I try not to book things too far in advance but this year for the first time we booked a holiday in July last year with some friends to go in June this year, it makes me anxious if i think about it too much but have just started to buy a few things and think about packing (14 day cruise so some bling and posh frocks required) and have also booked a holiday in October for Mother In Law 80 at Eurodisney. I was fortunate that i was able to reduce my working hours. Full time was stressful and too exhausting so was able to get a 24.5 hour contract, work 3 longer days as Community Psychiatric Nurse / some days in a Nurse Led Clinic and love my job.
It does very gradually and very subtly get easier. I have a friend who had practically the same treatment as me 12 months before so has just had her last appointment and back to routine checks now. She has no idea what stage or grade and assures me she has never even considered he possibility it may come back...So i guess we are all very different but i can only say if you take care of yourself, be kind to yourself, and remain vigilant with your health care you are doing everything you can.
Make sure every day you give yourself time to enjoy things in life it really is very early days following such traumatic and treatment. Take Care Butterfly x
Hello from an old-timer, ten years on now.
yes, the what-ifs do mostly go away with time. I occasionally have a wobbly - if there is an unidentified ache or pain somewhere maybe - but mostly I think about the possibility of a recurrence more in an abstract way now, something that is theoretically possible, but surely won't happen to me (I guess in much the same way I thought about BC before I had it).
I think in the earlier days it helped me to know I was doing everything possible to prevent recurrence - not only from a medical point of view, but also lifestyle. I told myself that everything I did (whether exercise, diet, whatever) was adding to my percentage survival rate, so each thing in isolation might have quite a small impact but taken together they all added up to good news.
And then it also comes back to this - how do you want to live your life? If it is going to be limited by BC (or anything else) would you like to spend your final years worrying, or enjoying life and living it to the full? Perhaps reminding yourself of that will help to suppress the destructive thoughts.
Yes, Charys & Liz, I completely agree.
I've dealt with it by accepting that the stats are completely on my side with this, yes, it could recur, but the risk is low & if it does then I'll deal with it then. There's no point in worrying about it.
At about the time I was diagnosed, someone I knew had a life changing stroke out of the blue who was younger than me. I then realised that my diagnosis was hardly the worst thing to happen & it put it all into perspective.
For me, one thing that has been a bit of an upside when going through this is, feeling more able to put any anxiety into perspective & not to stress about things that I can't control & may not happen.
THanks Lizred, for taking the time to reply. I think you are right, and I've been thinking the same myself...if you loose the panic and fear by accepting that 'things are possible' then you aren't forever chasing around in your head. Before I was diagnosed my husband said to me, and I was furious with him at the time, that I might have bc. I didn't want to hear this, I was terrified, as we all are/ were of that diagnosis. He was preparing me so that the fall of finding out would maybe not be so large, and getting me to accept that I might need to move forward and 'deal with' the treatment. I'm not saying that I ever want to have a positive result for bc again, but, maybe by thinking 'I might do in the future, the statistics don't show that as will, but anything is possible' it means you can focus on the positive that there are treatments and much hope. X
Hi, I don't think Im best-placed to answer this either as I recently had a couple of weeks bouncing off the ceiling waiting for biopsy results and spent plenty of time worrying about the what ifs (same thing, did I make the right choices, what if something was missed, what if something new turns up). I have also done CBT and am not sure how helpful it is as I tend to think, rather than challenging my what if thoughts, that there must be something to the what ifs as its happened once already!!
Anyway, the thing I did learn at the end of last year, and actually in connection with some other stuff I was struggling with, was that it helps if you can come to a level of acceptance. I realised I had been searching for a cast iron guarantee that it wouldn't happen again, that cancer would not appear anywhere in my body at any time and therefore all the thinking things over and over was to do with trying to outwit all the possibilities and have every option covered (if that makes sense). And of course you're never going to get that cast iron guarantee. And by acceptance I don't mean just passively sitting back and waiting for the next 'bad' thing to happen - of course we want to do things to give us the best chances - but being a bit more at peace with not being able to control everything that might happen.
Having said all that, I certainly don't manage a sort of 24 hour serene acceptance of everything (wouldn't that be nice) - I still have wobbles and worries (particularly when waiting for test results) but do let go of them sometimes and give myself a break. Hope that helps a little xx
Doh, I'd forgotten that you'd come off hormones Charys. No, not taking the tablets that reminds me, it's the constant painful back making me think it's spreading everywhere (although now I know it hasn't, so that should have helped) and walking like a 90 yr old. I find talking to myself, telling myself all the good things going on, and what bad things have NOT happened, trying to be grateful and being in the here and now, can be helpful - sometimes!!! Ha. xxx
Hiyer dear friend,
well, the thing is, I'm not on hormone therapy as was taken off it.....but therein lies another big 'what if.' Lol so, if your reminder is taking the tablets, mine is that I should be taking them lol Its just interesting hear you talk about it too, so that I can see there are others who have those 'words come back to haunt you' thing. That is exactly what it is....you are going about your business and then it pops into your head that the onc said this or the surgeon said that, and you start reanalysing it.The trouble is you've analysed it 100 times before, and won't come to any satisfactory answer anyway lol.
Someone heelllpppp us lol
Hello Charys, this is the big question, and I don't have an answer even though I'm nearly two years on. I'm hoping someone else will be able to help you (and me). I have been wondering if people with side effects from hormone tablets find it harder to 'move on' (like me). My friend doesn't need hormone treatment, and nearly 3 years on, she says she rarely thinks about bc now - really only if I'm wittering on about it, and is totally getting on with her life - her one stress is that her nipple points the wrong way! It would be interesting to find out whether those of us taking hormones, and having painful side effects, have this constant reminder of bc and therefore find it difficult to forget. Probably not just hormone difficulties, but physical problems too have a bearing in combatting the emotional fallout of our diagnosis.
I found on my notes I had lymphovascular invasion, but no chemo offered, but do remember asking surgeon and she said not to worry about it. These things seem to keep coming back and haunting me, but just have to think that she knows best and to believe her.
In regard to Moving Forward courses, I did a Wellbeing one at my hospital - the best thing was meeting other ladies and talking to them. We still meet up every 2 months. It did offer info on various topics (aaah, can't remember anything except a talk about if you have healthy eating there is no need for supplements) and we also used the gym with 'safe' exercises. It didn't actually tackle how you 'move on'!!!
Someone come and help us. xxx
If anything has done a moving on course, one not offered I here, I'd be interested to hear the tips they gave you...
So, some of you members who've been recovered for years, how do you get over the daily worry and when does it get easier ? I'm a positive thinker, at least I think I am. I know the pretty good stats, I know people are keeping an eye on me, I know there are lots of other treatments....etc....if I was to talk to anybody else who was anxious I would know exactly what to say and how to rationalise things...but can't do it myself at times.
The what ifs are imagining stray cancer cells, ( I was stage 1 with lumpectomy clear margins, no lymph node involvement, exactly a year ago) travelling here and there. Worrying that even though my nodes were clear, what if the cells went via a different lymph route? What if when they did the biopsy or surgery there were cells that got into my blood stream? What if it recurs and I don't know as my boob is so lumpy and larger? I was borderline for chemo and didn't have it....so what if I made a mistake as the cells were grade 3? What if there is something growing elsewhere right now (my surgeon said they couldn't guarantee that cancer cells wouldn't 'pop up' elsewhere) , so that remains on my mind. I know, I know...lots of things that aim stressing about....usually I am just active and getting on with life and not thinking about it. However, it is because I feel so 'normal' at times that the sudden jolt of fear feels so bad.
I know and understand cbt, and with a psychology background I try and adopt strategies which will minimise anxiety, but still it drops on into my head a good deal.....as I'm sure it does for so many women who also come to these forums.
I guess there isnt isn't an answer, maybe just time and slow adaptation to the situation will help?