Please can I share here as no one else is noticing!

I’ve just tried to support another member here and realised that I’d like to feel supported too…
I live on my own and now that active treatment is over there is no one in my world that has any idea how I’m feeling! Not even here on the forum.
After a very shaky start recovering from my mx in February with countless problems en route I’m free of treatment and hospital visits.
It took some time getting used to being without the medical nurture that visits offered, returned to more work where a professional face was needed and generally tried to locate aspects of my old life and initiate new activities more suited to the new ME!
I’ve attacked it with vigour and recognised that there has been so much learning through this journey… I’ve tried hard and done well but the sadness creeps in…
I have to work really hard then to stop this sadness becoming a low mood. My danger is a low mood can lead to depression. I try and keep busy and stop the sadness overwhelming me but I’m so tired.
I’m so very tired trying to keep my emotional fire burning brightly!

No one in my world has any idea that this is happening…
Everyone thinks it’s glorious when your treatment is over and I looked forward to it too but it’s far harder to sustain an even mentality than I ever thought.
Maybe my expectations were too high.
Maybe I tried too hard to become a ‘normal’ member of society again.
Maybe I’m an attention seeker because I miss the nurture.
Maybe I’m trying too hard too soon…

It’s a year since my dx and my first mammogram is approaching… I keep wondering whether this anniversary is triggering such thoughts of self criticism which are spiralling out of control???
I wouldn’t speak to anyone else like I speak to myself, would I?
I would praise and support another woman who has gone through such a journey and yet here I am constantly full of guilt that I’m not managing better… The spiral of self criticism!

I just know that this new stage of recovery brings so much doubt, anxiety and confusion. I am no longer the woman I was and I feel I’ve lost my sexuality. (That’s just a little side issue!!!)

Who am I now?

I will stop now before I write into the morning light…
I could write so much more!
I feel as if I’m in a confessional…

Wobbly Welsh girl x

Dear Welsh girl,
so sorry to hear that no one is there to support you .it is really a lonely process going through treatment,even if you don’t live alone because we always try to put on a good face for our families and friends.Many people on these forums can appreciate the feeling of let down after finishing treatment which we think will be wonderful.you already have a lot of insight into the way you are feeling and are so determined to overcome,I hope you can find a friend soon who realizes that you shouldn’t have to hide your true feelings,meantime on here you can say anything you want!!I am sure that others will also reply when they see your post

Bless you for responding Looking Lovely!

I’m wondering why you’re still up at this time??!?
Hope you’re ok.
And thank you for reaching out to me.
Your kindness makes me cry.

A Wobbly Welsh girl feeling heard at last! xx

Dear Welsh girl,
I’m up because I live in Malaysia although I am a brit,it’s quarter to one in the afternoon now,and I just picked my son up from school which finishes early on friday here.I have finished treatment after mastectomy,chemo and radio,and now have heart problems caused by the chemo,not to make you worry it’s not common.I really admire you because you can express yourself so well.after going through all these problems I learnt I had to allow myself to admit to my real feelings in order to deal with them.keep in touch

Hiya wobbly welsh girl,

I will support you in any way I can. I am sure every single other member of this forum will do the same. I think what you are feeling is normal. It must be hard feeling so alone with it, and early hours are a time when most people feel alone. You are right that we judge ourselves much harsher than we would someone else and it is great that you have that insight. You write your post really well. Maybe a blog might help you get your feelings out there. Or a counsellor? That article from the cancer counselling trust is great too, it explains about post treatment and a period of recouperment for mind and body. There is a thread about it. I think you have always helped others. Why not read your post again this morning and pretend it’s from someone else and then answer as you would for them?

Lots of love and support down my broadband for you

vickie
xxx

Hi Welsh girl,

I just wrote you a great long response and then the website went on a wobbly and didn’t post it - grrr.

What I wanted to say was that you’re not alone. You just needed to reach out and people would hear you and support you. What you describe is exactly how I feel and I think you’re spot on with your analysis.

We do expect too much of ourselves, especially as we were fit and healthy and successful before all this happened. We do miss the nurture and attention of the medical people that have treated and supported us. Some of the other threads on this have described it as post traumatic stress syndrome and the article that Vickie mentioned is absolutely brilliant in explaining why we feel the way we do. It is still on the Cancer Counselling trust website and is called ‘After Treatment Finishes - Then What?’

Please don’t be so hard on yourself. I think Vickie’s suggestion that you should look at your own situation and think about how you’d help someone else with the same feelings is very wise. Give yourself a great big hug and I’m sending you a cyber hug too!

E xx

just wanted to say i tried to post 3 times before it got on, and have been having real probs getting on the site today, so am sure many other forum members are suffering that problem today!

Hi Welsh girl,

I started a thread yesterday about 3 yrs on- please have a read and take hope from it as I felt like you do now when I finished my main treatment (I have secondaries so have ‘maintenance’ treatment which involves a lot less visits to the hospital). It’s like your safety net is pulled away from under you and because treatment is finished, people around you assume everything is hunky-dory and acn’t understand why you feel like you do.

I was very lucky in that my consultants understand this part of the whole bc thing and have both said that this stage can be worse than the chemo/surgery/rads etc (obviously depending on how you coped with chemo). You seem to go on to auto-pilot at diagnosis and keep going til it’s finished and then collapse when the impact of what you’ve been through strikes usually at the most unexpected moment - it’s a form of PTSD or bereavement.

Round here we have a charity called Cancercare and they provide all sorts of support for people and their relatives and friends who are/have been affected by cancer. They offer free counselling, therapies like aromatherapy, craft classes and so on. My bcn referred me 18 months down the line and for the last 18 months I’ve been going to a silver class once a week. It’s only for a couple of hours but I love it and it has been very therapeutic in a discreet way. Sometimes some of us compare notes but most of the time we just have a good natter about non-cancer things, a brew and a bit of silver work…

Anyway, you are not alone and your feelings are perfectly normal. I think most of would say to you, ‘been there, felt that’ when we were at the stage you are now. It will get better as you adjust to a new normal post-bc life - honest !!!

Liz

Hi

I finished treatments a month ago - lumpectomy, chemo and rads. It is almost 12 months since I found the lump and treatments have been OK. There was always an appt in the next few weeks, see doctor, chemo, etc. Now finished I expected to feel elated but didn’t. My last appt with doctor was when I just finished radio and she said it is perfectly normal to feel low and sad.

However, now after a month thought I would be OK. I had a break of about 4 weeks between chemo and rads, and after 3 weeks I felt fantastic. More energy than I had for months. I expected the same now but I am still feeling really tired from time to time and get days when I feel totally demotivated and lonely. I think everyone looks at me moving on but inside I feel a bit lost sometimes. I keep thinking I will get better in time but when ???

Wanted to share my story as I reading yours can see I am normal, it is not just me.

Liz mentioned a Cancercare charity. There is something similar near me but unfortunately they are only open 3 days a week - the same days I work.

Hope you can keep smiling and hopefully as time moves on, we will all feel brighter.

Annie

Hi Wobbly Welshgirl,
I am so sorry you feel that no one understands, but I think we do. My first time round was in 2003, and the most difficult time was when all was finished. I have posted before in the same vein. But to sum things up. I had a bottle of champagne ready to celebrate finishing treatment, but I never drank it. Everyone around me gave me the impression that they considered that I was cured and had just had a blip (of a few months), The long term psychological scar is there forever, and I (who always thought I was so strong) needed help to come to terms with everything. There is a lot of interesting stuff out there about after treatment has finished, but I’m not sure where (sorry)
All I can do is send you cyber hugs and remind you, you are not alone.
Love Maria

Thank you to Looking Lovely. I’m disappointed you’ve experienced further problems since your treatment ended. You have a lot to deal with and yet your time to listen to me was truly appreciated. I’ve had years trying to understand my moods and feelings and with my intellectual brain I do understand why I am feeling like this after a year of ****** BC. I think it is the fatigue and slowness that lower us so much. Everything becomes a bit more of a burden and less gets done but there is still as much to do as ever…

It’s a constant struggle to keep ‘life’ going when you’re so weary!

Vickie I do use the services of an oncologist counsellor but I decided that I didn’t need her as much now,so I booked a longer space between appointments! Big mistake!
Reading my post again made me feel it was still accurate in the daylight but I think I’m trying to do too much. I need to shed some of my workload and social activities but not until after this weekend when I have my stall open. Still designing and producing until midnight tonight!
More time to just be…

Elsk, how lovely to hear from you again. I read the article last night and it did confirm everything I felt but it was necessary to call out last night. Today I feel heard and that is a wonderful feeling to know I’m not alone.

Liz, I read your post and it was truly uplifting. Thank you for remembering the times after treatment ended and reassuring me. I will get through this but it is lonely…
Your silver work sounds great. I need my artwork to give me that buzz too. The creative side is very stimulating, isn’t it?

Annie, this state is normal and it’s good to feel supported by others who understand what this stage entails.
Finding it hard to smile at present as I have an uphill load until Sunday and then I’m going to give into the restful state of ‘pottering’ where nothing ‘has’ to be done…
I hope you can all give up a bit of the pressure and take a breath or two. Thank you for all your support. I feel heard and that is something that I all too often miss out on.
Bless you all.

With love from Welsh girl xxx

Hi Welsh Girl

Sorry to hear how you are feeling. I think that your feelings are perfectly normal, for a year you have probably lived your life around hospital appointments and have been supported by a series of professionals. You are now facing that ‘unknown’ stage and without support this is possibly more difficult. You have had a year focusing on Breast Cancer and it is hard to switch off from this. It will still be very much part of your life, which is hard for anyone who hasn’t been through it to understand.

I found finishing my treatment as a bit of an anticlimax, I was excited about a forthcoming holiday but still was in shock everytime I looked in the mirror and although I returned to work at this point, I wasn’t the same person.

We all understand on here, so please do use us to rant or for sympathy at any time of night or day, turn to us,

Take care Nicola xx

Welsh girl

This is the link to the very helpful counselling article. I am posting this one because it is a fuller version and covers things like returning to work. I am so sorry you are having to deal with these feelings alone. I do understand how you feel, though. I am also nearing my first post-dx mammogram. I am not alone but that doesn’t always help. It is only we who truly understand how we feel. I think distance and time is helping me to cope and I hope it does for you too.

cancercounselling.org.uk/northsouth/extra4.nsf/WebResHarvey?OpenView&ExpandAll&Count=500

Good luck.

Ann xxx

Whoops! Just realised you were directed to the actual website. I thought you had just been given the link to the article. Sorry!

Ann x

Thank you Maria for your understanding. I think our posts crossed!
Here I don’t feel alone today but previously I felt I couldn’t post my feelings when I was busily supporting others. You feel glad to help others when you’ve finished treatment and you want to let them know that it will get better…
So it is a real ‘wake up call’ when you realise this recovering business is so much harder to maintain than previously thought…

Really hope you’re coping ok today. I know from your other posts that you have a great deal to cope with this second time around.

Hug from Welsh girl x

I was (still am!) single when I was diagnosed and had very similar feelings a year after I started treatment (have finished Zoladex and am still on Tamoxifen). My oncologist said that around 30 per cent of patients can get depressed/overwhelmed at this point. I was bullied/flattered into seeing the psychologist attached to the oncology department and whilst the process hasn’t been easy I am glad I’ve done it. I’d had conselling too, but this has been much more rigourous but also interesting.

Dear Welsh girl,
I am about a year ahead of you in this game, and posted on this forum recently about fatigue and people expecting you to be as you were previously.
Hearing that you had an mx in February, in healing terms thats practically yesterday! Everything, mentally and physically will still be wondering what the hell happened!
It is hard, but be kind to yourself and get plenty of rest.
We can be “poster girls” for treatment and recovery, but it still takes lots of time, thats my fourpennrth,
Love,
Mimsy

Hi Welsh girl,
sometimes it just helps to write things down doesn’t it? reading through what you have typed, l think you know why you are feeling low, you have lost the ‘old‘ you, the person you had known so very well, your whole life was mapped out, then breast cancer came along. From that day you were never the same person, that person has gone forever, or so it seems!

We are all so very different, some find it easier to cope than others, l think living by yourself must be a terrible struggle, l have a husband who is supportive, but in a way l still feel very alone, l remember a friend saying, you have all your lovely family, but this journey is your journey, and it will be very lonely, because only you know how you feel. Only you feel the pain of having cancer, the results the treatment, the emptiness after treatment has finished. To everyone else the treatment is finished, so get on with your life! but we know that is not possible, we know the worry of every ache and pain! Every mammogram, every anniversary of our diagnoses, operation, treatment, it is never ending memory, so how can we be the same person we once were?

I know l have to live with this, it will never leave me, l feel today that l will never be the person l once was. That doesn’t mean that is a bad thing, not many people get a chance to re start their lives, not that we would have chosen this way to re start our lives, in time l am sure you will begin to feel stronger, as time goes on hopefully the breast cancer and all its worries will find their way further back in your mind.
I know doesn’t seem like it! But what else can we do? We may not know exactly how you feel, but then you don’t know exactly how we feel, but you still come on the forums and give support, and that is all we can all do.

Still very early days, our body has taken one hell of a shock, in more ways than one, so l think the sadness will keep rearing its ugly head. You are allowed to feel sad, don’t feel guilty for feeling sad, let it creep in and let it creep out as quickly as you can.

We do have that British way don’t we, stiff upper lip and all that! Same with putting on a happy face! Someone said to me yesterday, you always look so happy? I said, ‘inside l am crying’ we are, we will be sad! We are allowed!

It is glorious when the treatment has finished! l cant wait, but…….others don’t see what we feel, they just try and help us along, and that is good, if the whole world were like us ‘at the moment’ we would be a pretty miserable world

No your expectations are not too high, just takes time!
Maybe you have tried to be ‘normal’ too soon, again, just takes time!
Maybe you are an attention seeker? Because you miss the nurture! And maybe like us all it just takes time!
Maybe you are trying too hard too soon, so give yourself some time, after all it just takes time!

And there of course is another reason for how you feel, a year since your dx and first mammogram coming up. Oh what a better reason to worry, worry, worry,
You are no different from us all, you just feel different at the moment, another day you will be on here supporting another person that is having a ‘down’ day

Far too early to be feeling your ‘old’ or ‘new’ self, after all welsh girl
IT JUST TAKES TIME! So give yourself some!

Lots of Hugs and Love
Sandra xxx

Hi Welshgirl,

Just thought I should let you know what happened to me today.

I had my last dose of Herceptin this afternoon and shortly after a neighbour came in and gave me a hug and said, " well it’s all over now, you are back to normal" Could you not just scream? Unless one has been through the horror of mastectomy, chemo, rads and 12 months of Herceptin or other adjuvent therapy one has absolutely no idea. Am I supposed to be the person I was before just because my treatment has finished? I think not. I am left with Lymphoedema in one arm and the other one looks awful after all the times a needle has been shunted in for whatever reason. My hair is grey and straight and I hate it. I do not look the same at all and I hate seeing myself in the mirror. I am lacking in energy, have a slightly leaky bladder when I cough, am not able to sleep for long enough, my nose keeps running, my toenails are still coming off etc etc etc. I saw my GP last week and at least he said to me that I may feel dismissed and unwanted when all my treatment is over and that he would help in any way he could.

So Welshgirl, you are not in any way alone in your feelings and if I could give you a hug I would. This forum and the people on it have kept me going through the bad times. It does not help though that I have lost 2 ‘friends’ on here from the nasty cancer and neither did it help to be told “well you did not really know them”

All we can do is our best with a little help from the people who actually know what we are going through.

E

Hi Welshgirl

I cant add to the wonderful elequent posts that have already been on and your own description of what we go through after active treatment is over. The neighbour with the hug for E - OMG how awful!! Some people have treated me after treatment like I’ve had the flu - your treated now your better - what a joke.

Just sending my support to you and good for you posting how you are feeling. It is so important to let it out and we all understand.

Love and hugs Anne x x