Thanks Seabreeze and Songbird for your replies - what lovely names you have both picked.
Good point about the blood levels, I will think about asking the doctor to check them.
As you say Seabreeze, it would be good i they did follow ups after rads are finished. I felt very strange on the last day of rads as we weren't seen by anyone, you just walk out. I did have a short clinic appointment with the consultant on day 7 of my rads but it would have been better to get that at the end of treatment.
Songbird - your comments regarding fatigue and anxiety, I think that can be half of the problem, I do agree, I think a lot of us seem to be suffering with coming to terms with all that has happened and the shock of it all.
I am 65 so at least I don't have the worry of trying to get back to work like a lot of you do. I finished working just under a year before I was dx. I had worked almost all my life except for a few years when I had my daughter so it was difficult retiring - you do feel strange, not having any structure to your life and then I was dx with bc at my regular screening last January so perhaps a lot of this is connected to the way I feel. Too many changes in a short time, something I need to get my head around.
Hope you are all having a good weekend and wishing you all the best
I haven't posted for a little while but read the forum regularly and just noticed this thread which I can relate to a lot of things that have been said.
I finished rads in June and although I was lucky to escape chemo I became very tired a couple of weeks after finishing rads. I also suffered a tooth abcess not long after and then a cold and cough which wouldn't go away for a while. The fatigue has been really hard to deal with but I think I am now slowly starting to come out the other side but it's about 5 months since my rads finished. I have been trying to go out walking daily and that is helping and now I seem to be able to go for a walk and not feel quite so exhausted as i was a few months back.
I've always been a bit of an anxious person and also finding it hard to come to terms with all that has happened this year and like all of you who have been dx with bc, my mind runs wild sometimes and I find it hard to move on.
It's good to come on the forum and realise I am not alone with my thoughts as family and friends never mention it now.
Thanks for reading and hope you are all ok
I think it's entirely understandable that you feel angry. I have felt that too. I hope you find a way to get through it all.
Sending you my best wishes.
I had rads but no chemo and was really, really tired. I cant remember exactly how long I took off work as it was some time ago but I went back part time initially. Then I prob went back FT a little too early and found it really tiring. It did gradually ease up a little but i was on tamoxifen, which probably contributed to ongoing tiredness.I think part of me either wanted or thought I should be getting back to normal but I learnt that it isnt about going back but about finding a different way forward.
Basically it can take longer than you think, so just be kind to yourself.
Try not to put pressure on yourself. Think about starting back at work gradually if its possible and dont rush.
Hi Seabreeze how are you today?
You are not long out of treatment, so really very early days for you.
Just because you escaped chemo, doen't mean you should be back to work straight away. It can take some months for the mind and body to heal after something like this, so don't go rushing in if you don't feel A1.
Gentle steps each day is the way to recovery..
Jenny how are you? XXXX
Hi Jenny - I've sent you a private message - interested in the post-treatment fatigue programme that you mentioned.
Hello Seabreeze, sorry you are also so tires etc. Naz, thanks for your kind words.
Me... well I felt so lousy on Thurs i must of cried for about an hour, anyway my lovely BCN has put me in touch with someone- I am so lucky- they are running a programme in conjunction with macmillan at a hospital nearby specifically dealing with the fatigue side of post cancer-think it is the first in the country, so i had an appt last Monday, and have another on Fri 5 Dec( away in between for 10 days) then in New year, will hopefully be on a 6 week programme. I will try anything at the moment, I have had all the blood tests.also in the process of changing GP. had appt with new one on Friday, he is going to sort out all the transfer of notes etc, then arrange to see me again. so trying to be positive and tell myself that things can only get better in 2015.
Seabreeze, my OH thinks they took my only braincell out when they did the first op. for once i think he is right. it is definitley very foggy in there.
Naz I hope you are feeling brighter.
This site is a life saver, at least everyone on here understands.
Tonight i am doing something that i have not done for a very long time- babysitting overnight, we have the 10month one here- so her mum can go to a reunion with friends- she used to work for GWR- our local radio- hoping she has a good time- we certainly are. the little one is so happy and all smiles.
Huggles to you all jenny.x
What a long old road it is isn't it? Yes, you will sort yourself out my lovely, but as you know, it all takes time and that i think is the most frustrating part for survivors because more often that not, we are not able to just bounce back and pick up where we left off.
Have you been to your GP re; your fatigue at all Jenny? Maybe have some bloods done check for anaemia or such like.
The emotional recovery can be long and hard. As you know, i am 5 years on from DX. Had been doing great for weeks, but got over tired, travelled miles for a 2 day work event, got overwhelmed with all my seemingly clever colleagues who have heaps of confidence, had to listen to them rattling on about all the courses they were doing etc and i thought 'what i have i been doing - oh i know dealing with my new life as a BC survivor' and cried on the train home!
You will get there and you will reach that point of calm, but i can only describe the journey as a rollercoaster. up and down and not in a straight line cos our emotions are not designed that way.
Here if you want to chat ever.
Hello Ladies, Hope you are all well and ok. I am now 2 years from Dx and first op. and all clear, only my nipples to be tatooed on. I hit a very low patch just after last op -end march this year, had some counselling,and was plodding along nicely. BUT... I feel as if I am back where I was. I get so very tired, and now it is making me emotional again. Will I ever sort myself out and find myself. old or new. and how much longer is this journey.. is this how you all felt?
Naz you sum it all up to melly. so guess I need to be patient.
Sorry for the winge, just totally fedup. Thanks
As always sending bundles of warm huggles. Jenny.
Hello Naz, and Skinnyminx, So sorry that you are both feeling so mixed up. I'm only 18 months down the line but it is as if you have said all the things I keep thinking and saying, so you are not alone, I think the stages after all the treatment are as hard if not harder than the surgery and everything. I was doing fine, then suddenly it all hit me, and now I seem to get upset at the smallest thing. I've asked the same question, who am I, I'm not the old me, as no longer got 2 e cups. now have 2 size B very nice when dressed BUT thats where it ends. My GP and BCn suggested some counselling -been going for last 5 weeks. so maybe something for you to consider, mine is through McMillan, and she is very nice. think it is working,
I am not back to the swimming yet ( cracked some ribs!) but have been going to a very gentle yoga class, that certainly calms and relaxes me, I would recommend it, but you need a good teacher, i go to a small studio, not at the main leisure centre. or try a DVD at home,
Take Care and enjoy the sunshine. and as always sending warm Huggles
Ah Skinny, thanks for your reply, it does sound as though we are kind on the same wave length here and i am sighing a big sigh of relief!
The truth is, i feel as though i have felt every single emotion there is to feel on this journey so far and even after 5 years, i still wonder what an earth happened to me! Like you, i never in my wildest dreams, ever imagined that i would have to force myself to find positives in my life or find some kind of acceptance with my new body, it seems to take forever doesn't it? You ignore your flat chest, i ignore my reconstruction (was not mentally prepared for an implant for a replacement breast).
What type of work do you do now if you don't mind me asking? I used to be a school teacher, then i had children, then came BC. I would like something nice and calming for my brain (but not sure if such a job even exists!) will continue to search though.
I agree, a looming diagnosis date always sends my head into a spin. I question my existence, being and all sorts of mad things! I do the 'why me' thing, then get really angry that lots of women won't ever have to experience the traumas we have faced. I feel bitter at times, almost envious of women who live free of the worry of recurrance, of those who live outside of the cancer world. Of women who flaunt their natural cleavages in public and who can feel both breasts and those who are not scarred here there and everywhere.
I am not sure whether more frequent mammograms would help to reassure me or not really ( i get very stressed once the letter drops on the mat) so perhaps not.
I suppose what i am seeking is some calm from the storm, a calmer brain and in many ways, that is coming, but not fast enough i guess. It doesn't take much to set me off and this is something i need to work on.
I know i can't go back and i have no idea what lies ahead, so living for now seems to right thing to do, but at times this is hard, harder than i ever imagined, when i cant shave under my left arm or i have an itch which can't be scratched because the area is numb. I long to feel both breasts, to feel whole and complete, but know that will never happen, so no point going down that road! I get angry with those who have drawn a line under it all years ago, but for me, it is never really over, but more continuing to get used to the new me.
Thank you Skinny, you have helped loads just by posting stuff which i can totally relate to and understand.
Oh Naz - I could have written almost exactly the same post. Not sure I have any tips but I do empathise.
I'm nearly 5 years post-diagnosis too (mid July) and as far as I know NED. I'm still getting used to the new 'me'. Just not something I expected to have to do. I suppose that, early on, it's all about the surgery and treatment and concentrating on getting through that and staying alive. Later on it's more about adjusting to all the new stuff - physical and mental.
You've been kind enough to post on a thread I opened about reconstruction. I do sometimes wonder if we ever get used how our bodies look and feel post-surgery? I haven't had a reconstruction and realise that I just tend to ignore the flat side of my chest, I have also gradually become more accepting of the appearance but I still essentially hate how my chest now looks.
My confidence also took a massive knock with the cancer diagnosis. My head often feels 'muzzy' and I am definitely slower on the uptake these days. I look back to the job I was doing a few years back (full-time in a cut-throat corporate environment) and wonder how I ever did it! It sounds like a good idea for you to look for a more relaxing job and I wish you luck with that. I changed jobs 18 months ago and that has helped alleviate some of the fatigue.
Yes, the fear of recurrence also lurks with me - especially around this time of year when memories of the sudden diagnosis are in my mind. One thing that brings some reassurance is ensuring I will continue to have yearly mammograms after the 5-year point (something my geneticist is sorting for me), rather than just reverting to the NHS national screening programme (3-yearly mammograms). Do you think you would gain some reassurance from having more frequent mammograms going forward or would it just feel more stressful? Maybe this is not relevant (can't remember if you've had double recon). If you wanted it, could you arrange more frequent screening? (Perhaps you already have it in place?)
Don't know where you are age-wise/hormonally but chemo and oophorectomy shoved me into the menopause very rapidly and I'm on AI so my poor sleep is probably a result of this - and the fact that, like you, my brain is not calm.
When I say "I don't feel like "me" any more", my husband reminds me, quite rightly, that I am "me".
So, in summary, Naz, you are still you. You've had a massive adjustment to make in your life and something that you probably never expected. Psychologists probably have all sorts of fancy terminology for what we're going through but I think "finding the new 'you'" is a perfect way of describing it.
Wishing you the very very best.
It's good to hear from you again. I've attached a link to an article which I thought you might find helpful.
Very best wishes
I don't often post any longer, but do lurk from time to time
I was dx almost 5 years ago now. Left MX, node clearance, chemo and 2 lots of reconstructive surgery. I am NED as far as i know and getting on with life.
The issue i have, is that i have lost lots of confidence since my BC dx (not that i was all that confident before hand) but now i have lost more. My sleep is poor, i find concentrating for any length of time quite hard and i am always almost tired. My children are 9 and 6 and keep me busy and i have a part time job, which involves supporting others (online) and can be quite mentally draining. I am on the look out for a different job, something more relaxing, but have not been successful so far.
I am sure part of the reason why my sleep is poor, is because deep down, under the surface, i do fear the cancer returning ( i know i shouldn't, but sometimes i do). Also, i am not confident with my reconstruction, even though i am more accepting of it now. I am not sure what the issue is, but i do not feel like 'me' any longer..i am not the person i was and i am having trouble finding the new me.
I need to relax, i want my brain to be calmer and happier inside and i want to like my reconstruction,instead of disliking it!
I do the living in the moment thing, i keep busy, love doing stuff with the kids and try and stay positive, but sometimes, well it gets too much...Is it just me? (pretty sure it is!)
Any tips most welcome