Hello
I don’t expect any replies to this thread, but feel i need to write it down somewhere once and for all.
I was DX with grade 2 BC three years ago aged 38, had left mx and node clearance, chemo and currently on tamoxifin.
During this time i was offered tissue exander recon, i went along with it and it failed. To cut a long story short i had to have emergency surgery last September to rectify some of the problems created by my then surgeom. It was horrid and extremely stressful to say the least.
I have also involved a solicitor to look the case to see whether there is a claim for clinical negligence and i am currently awaiting the report from the independent PS to confirm one way or the other.
I never once really spoke openly and honestly about my feelings, hardly cried and got on with life as best as i could with my two young children and parter. I like many ladies feel i was swept away from one surgery/appointment to the next.
Now three years on, i have had the last of many operations including new reconstruction (which i am still coming to terms with)and everything is catching up with me.
My mind is plagued events from the last 3 years and it is beginning to affect my sleep.
Everyone has said how brave/strong etc i have been but i don’t feel it now!
I suppose what i am trying to work out is how i can lay everything to rest (when i have a potential clinical negligence case to deal with)?
I want to put it all away in a big box and close the lid - does that make sense?
I wish i had addressed my feelings and ‘dealt’ with things better back then, instead of being ‘brave’ and strong’.
For those of you who have had counselling- has it helped in any way?
I am sure your fellow users will be along with shared experiences and support for you, you may also find it helps to give our helpliners a call, you will be able to talk over your feelings and get some ideas regarding further support to help you through this difficult period, lines are open 0808 800 6000 and you can call between 9-5 during the week and 10-2 Saturday
I can understand exactly where you are coming from on this - the logical side of your brain is saying its three years ago, get on with life and draw a line under it - (and that is where friends and family cone from) whereby your emotional side is still mourning the life you had and the carefree days and you can never go back to where you were then. I haven’t had councelling either and in January it is three years since my Diagnosis and I think about cancer, and what has happened to me almost daily. I don’t think there is a ‘normal’ we are all different and we all handle it in a different way but I think we all have to find a way with living with the uncertainty - Councelling may help or may not - I know some ladies who have found it very helpful others who haven’t and felt ‘patronised’ by someone who they felt had little understanding of what they had been/still going through. You obviously have the added negligence issue to deal with too so its not surprising you feel as you do. What I would say is don’t be hard on yourself and allow yourself time to feel the way you do without feeling guilty about it and why not try and councellor and see how you get on with him/her? xx
Thank you so much saffronseed - what you say rings so true.
The logical side of my brain does indeed say get on with it - it was 3 years ago, you have a new chest and you are alive.
But my emotional side does is struggling with that…
Other than possibly seeing a counsellor i do not know how to deal with these current feelings - will they pass over time i wonder?
I am so glad that the last of any big surgery is behind me as i have found that after each one, INCLUDING the follow up appointments, everything comes to the forefront of my mind when i am trying to push it away and forget!
My mammogram is due next month so that is another reminder - i really don’t want any further hospital visits, checks or anything EVER!
Hi Naz,
I had counselling, as I was diagnosed only three weeks after my mum had died of cancer, so it was a hard time dealing with both. I had it through a local cancer charity, having been referred by my oncologist at the suggestion of one of the nurses on the breast surgery ward after I had broken down in tears on my last day there after my mx.
I’m not sure if the counselling per se helped, but it was useful to have an hour of ‘me’ time each week, when I could express dark and difficult thoughts that I didn’t want to burden my family with. At home I was playing superwoman, as my children were 12, 14 and 17 at the time, and I thought, rightly or wrongly, that if everything at home stayed as normal as possible that would be best for them. So I tried to stay as strong as possible for them at home, with as little disruption as possible, playing it all down, so my hour of counselling was a good outlet where I could show if I was scared and not coping well.
Hi NAz,
I have had counselling and it really helped me - when i was diagnosed we had just moved house into a building site - literally two weeks before - and we lived in one room with the builders all over the rest of the house for a year while i did mx chemo rads - evryone siad i was strong etc etc - and then i crashed - counselling if you get the right person can really help but also you have to let it help - allow the exploration of the fellings and fears you have been managing so well -
miy fears anger etc haven’t gone away but i know them better and am able to deal with them better, and my OH and i have a much better understanding of how we are with it all individually and as a couple -
very best of luck with it, make sure you get a reputable counsellor who is a member of BACS
n
Thanks Road Runner and Moorcow
I am not sure if counselling is for me or not yet.
At the moment i don’t understand why everything is coming to a head now?
Maybe because everything has been supressed for so long?
Or Is it because the legal case is forcing me to keep things at the forefront of my mind?
What i really want to do if forget NOW.
ah yes the wanting to forget bit -i took to Merlot …not really recommended but it got me through a bit of a tricky patch and then i stopped - my stuff came to a head when i was past the crisis, and looking back so i guess your legal stuff is getting you to look back…
distraction activity is great alongside a bot of sorting it out in your head and your heart…lots of films, books etc did it for me,
all the best
Hi Naz. I’m not really sure if I can express this correctly, but maybe everything’s coming to a head now because now is the right time to deal with it? Does that make sense? You had so much to focus on over the years, dx, treatment, children, partner, family life, friends… too much to do and too much to cope with, it’s like it’s been waiting for you to say ‘ok, let’s look at this now’. Maybe counselling with the right person would help? I don’t think there’s any harm in trying it, I don’t see it as being any different to seeing your dr for an illness or the dentist for teeth problems.
I have just read all the posts and Naz I know where you are coming rom.I am 2 years down the line and really struggling with mood swings saw my doc this am and he has given me a number to ring re counselling which I am seriously considering.I have had so much s… going on in my life that I don’t just think its the BC thing but that is stiill forefront in my mind.My G.P did say that its not unusual to feel worse 2 or 3 years later and he is possibly right as some of my friends are no longer here and its difficult to talk it out with family as my children don’t live close and I feel as if other half is probably getting sick of my moods.I hope you get some help and start to address things and thank you for the post as I don’t feel as if its just me good luck Janice x
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My sincere sympathies Naz - you’ve been thru the mill rather more than most. I’m no counsellor but have extensive experience of controlling my own clinical depression and I’ve helped others thru theirs, and I had a pretty time after my primary dx too, with septicemia twice which nearly killed me, and then when I was ready to go back to work 15 months after dx a protracted dispute with my employer over my right to go back.
A couple of things hit me - you say you’re now over your ops and coming to terms with you as you are now physically. Whether its a ‘simple’ WLE and rads or more extensive treatment, there always seems to be a danger time when active treatment stops and you have no diary full of appts to look forward to and focus upon. I put it to others after bc treatment that you’ve been on a steadily moving treadmill which carries you along like it or not, and then suddenly treadmill stops and you fall off and don’t quite know where to go or what to do. This seems the time most people ‘give up’ holding themselves together and let go a bit, and we’re all strong ladies who don’t like letting go and it’s hard. Acceptance that this is the case and you now need some ‘me’ time is vital now to start getting you back. For you this is hard - your treatment treadmill has stopped but you have another to tackle - the legal one - as I did my employer.
I only coped by handing over a lot of the job stuff to my union rep (a close friend I trusted) and trying to chill and get me back. It wasn’t easy, and I didnn’t totally succeed, but I did ease off a bit. I wasn’t so hard on myself, expecting the old me back straight away. The job fiasco lasted 8 months, until they finally made me redundant, and even when that was over I didn’t have immediate relief, and still wasn’t right when my next treadmill arrived - secondary bones. The ‘good’ news with secondaries (!) is they are a permanent treadmill so hopefully I don’t have to get off this one for a while - when I do it will be because there is no more treatment available and we know what that means.
Will counselling help? A lot depends on you and who you get to see. I’ve had successful counselling, counselling I walked out of in tears and struggled to fix in my own head for 2 months afterwards, and counselling which as said above gave me someone outside to talk at. I’d recommend the first or last types!! You might find something like reflexology gives you the me time you need to start the healing process - not just one session but a course. Not really for the reflexology supposed agins but for the time out it gives you without being too intrusive on your body, which if you’re not relaxed you can’t always take.
Good luck however you proceed - writing on here can help too.
Nina
Hello everyone again and thank you!
Thank you for taking the time to reply to me, it means a great deal right now.
I am quite shocked at how i am reacting at the moment given i am so far down the road.
No-one other than you would get it so i am not even going to try - maybe i should? But i feel most would say pull yourself together and get on with it, which is what i have effectively been doing for 3 years!
I even started a new job with a gaping open wound and the knowledge that i could develop an infection at any time -0 that is how much i got on with it.
Moorcow, you are right distraction, is a great distraction! I do need to to make more time for me and do things which i enjoy.
Ali - Maybe now is the right time to deal with things - but what does that mean? I am guessing accepting that i cannot change the past, look to the future and try not to panic over every niggle ache and pain…
I will try hard and see how i get on as i so want to put this behind me somehow now.
Jmr - I am glad we can empathise with one another and we now don’t feel so alone. I am kind of relieved that your GP has suggested that it is not unusual to feel worse some time later - no-one ever told me how i may or may not feel some years down the line.
Please do let me know how the counselling goes if you decide to go ahead won’t you xx
Broomstick lady - Thank you for sharing part of your journey with me. Again much of what you say about expecting the old me back so soon rings very true. I am pretty sure the legal case is hindering my recovery -OH says forget about it and put it to the back of your mind. Very hard when you are mutilated by a surgeon and he denies there is a problem and a simple needle and thread will make it all better!
I am stil unsure about going down the counselling route -the person would need to understand my thoughts and be able to empathise with exactly how i am feeling.
You too have been through it and i am truly sorry to hear of your secondary DX.
Once again thank you for your thoughts xx
Hi Naz, just read all the posts and agree with all the above. I would like to tell you if it helps that i have finished active treatment in Nov last year and also felt that “falling off the treadmill”!! I am now seeing a specialist cancer psychologist and it is the best thing i have done for me to be able to move forward. I am able to talk to her about my fears and worries and she really understands and helps me make sense of whats on my mind. i do also understand it is not for everyone but it might be just what you need. Never lose sight of the fact that regardless of what your dx was you have had cancer and it is not just another illness it is very hard to deal with. I hope you can get sorted soon and be comfortable with your life. Take care Maj
Hi majelsty
Thanks for your reply to my thread.
How do I find our about seeing a cancer psychologist?
Will they even listen to me ?
I angry at being mutilated by a surgeon who did not have the knowledge or understanding to recognize that his work was shockingly bad!
I want justice and am petrified I will not get it if my case is not supported by the independent plastic surgeon.
Angry that I have lost my breast and angry that I have had to undergo 8 operations in the last 3 years!
I know I can’t change the past but I am finding it all so hard right now when I should be well on the road to recovery.
What is wrong with me?
Hi majelsty
Thanks for your reply to my thread.
How do I find our about seeing a cancer psychologist?
Will they even listen to me ?
I angry at being mutilated by a surgeon who did not have the knowledge or understanding to recognize that his work was shockingly bad!
I want justice and am petrified I will not get it if my case is not supported by the independent plastic surgeon.
Angry that I have lost my breast and angry that I have had to undergo 8 operations in the last 3 years!
I know I can’t change the past but I am finding it all so hard right now when I should be well on the road to recovery.
What is wrong with me?
Maybe if I stop thinking and get on with my life things will be better?
Perhaps I am dwelling on stuff too much?
Is it really such a big deal to go through all this surgery and fight a legal case?
Hiya , I’m nearly at the end of a course of cognitive behavioural therapy, for much the same issues as you’ve raised. It’s been fantastic and I could heartily recommend it. I was diagnosed march 2010. Why not give it a go? Referral was to a specialist in helping people adjust to life changing diagnosis, and via my breast care nurse. Xxxx
Hiya , I’m nearly at the end of a course of cognitive behavioural therapy, for much the same issues as you’ve raised. It’s been fantastic and I could heartily recommend it. I was diagnosed march 2010. Why not give it a go? Referral was to a specialist in helping people adjust to life changing diagnosis, and via my breast care nurse. Xxxx
My GP referred me back to the Cancer Psychologist at my local hospital and she was brilliant with me and I would certainly recommend it. It took several weeks for me to trust her and then realise that I had to create a new Me. She taught me Mindfulness Training and listened very careful to what I said. These people are special and can help us. Try it , you have nothing to lose but everything to help you feel better. Love Tracy xxx
Hi Naz, I got a referral from my gp to see the psychologist. maby you might be able to speak to your gp and see what they can do for you. Their job is to listen to you so im sure they will. you are very angry (rightly so as you have been through a lot) and that is not healthy so i dont think you have anything to lose by giving it a try. Hope yo get some help
love Maj x