Hi All
I am 47 years old, was dx march 07, had lumpectomy , followed 2 weeks later by lymph node removal and more removed near to tumour as margins not clear, no lymph node involvement but possible lympho-vascular invasion, so had chemotherapy 6 cycles followed by 20 rads. am now on monthly zolodex implamt and letrozole for 5 years.
My problem is certain people keep telling me I need to get back to normal, go back to work, forget about what has happened and move on. However, i
I don,t think I can at the moment. you see I feel like a totally different person, I was very patient before and now I have not got any patience at all. I live in fear of it coming back. I cannot just relax anymore, I feel like I have to be on the alert all the time. I have very little tolerence when people are talking about what I now consider to be mundane things. I cannot concentrate for long periods of time and get bored easily. At the moment I cannot stand to be near big groups of people and feel like running away. Sometimes I feel like I am a stranger to myself. Will I ever be myself again?
Not at the stage you are yet but have a very good friend who is three years down the line who has warned me of this and it seems its quite common to feel this way.
Have you been offered or have you had any councilling (spelling) this is supposed to be really helpful in moving on - other ladies on here have tried various relaxing techniques which Im sure someone will come on and update shortly.
thanks for your reply
I am still in the process of sorting out some counselling, apparently the one in this area who was for oncology patients is now only allowed funding to see patients with cancer who are being given palliative care. I have been having relaxation and reiki at the local hospice which has been very helpful, but I think maybe I need to tell the specific people who are saying these things to shut up because they have not got the faintest idea what they are talking about.
I unfortunatley can agree with your last comment I get really miffed with people who talk about for example not getting their house work done as a major problem!!!
Have you noticed that everyone is suddenly an expert LOL!!!
Is there a delicate way tht you can say what your feeling without upsetting these people OR if you are not worried about upsetting them just go for it.
Hi Dawne,
Had lumpectomy mastectomy and rads which finished on Feb 13th and now back to normal - not!
First of all what’s normal?
Secondly, can anyone go thro bc and come out the other side the same as they were before it happened? I don’t think so.
In physical terms there is a daily reminder that I am not the same as I was 6 months ago and just as there have been physical changes so there have been mental changes and adjustments. Its a challenging and often difficult journey for many people. Personally I don’t want to forget what’s happened, hopefully I can use the experience to help others I meet in a similar situation having been there myself.
People around us want the best for us but in doing so see it in terms of getting back to normal, putting it behind us and moving on. At the start of bc I read a very helpful leaflet from BCC which talked of the different ways people coped, there being no right or wrong way, whatever works best for you. I think its similar as the treatment comes to an end, we are all so different and its important to deal with things in our own way, with help when needed, but not pressure from people who have not been where we have been.
I’m sure we will all be ‘ourselves’ again but perhaps a little different than we used to be and maybe even a little ‘better’ having been on this journey.
lots of love
Magsi x
Just wanted to send you some (((HUUUGGGSSS))).
and also to say that you are not the only one to feel like this.
I am now two years from diagnosis and am still not back at work.
My energy levels are all over the place; despite having dietitian’s help.
My memory is also all over the place. My oncologist says that this may happen because I take arimidex and am now diabetic.
I have had loads of counselling and it really did help me. But I’m still in limbo.
I know that we have been through so much and it’s no wonder that we are a bit different to how we were pre cancer.
But I also have noticed that the people who tell me to move on are often the ones who haven’t had the disease.
Just wanted to say I know how you feel. I finished radiotherapy end of Feb 07 after WLE and chemo and foolishly thought that I would return to being the same-NOT. I went to my GP in March and she signed me off for another 3 months and so far I’ve had 1 session of counselling. This has helped but I do wonder if I can move on. I hate being in busy places as I feel I’ve got no confidence. I also think that after treatment has finished it is a time of reflection and it suddenly hits you for six what you’ve been through in a very short period of time.
I am still having Herceptin and also on tamoxifen and currently waiting for surgery on my good boob. Whether or not that will help who knows.
Just a thought to add into this do you think it would help if we attended support groups or are you already doing that? You know to talk with someone who understands.
I am just about to finish with my oncology appointments and am feeling awful at the moment. I went through a pretty overnight menopause whilst on chemo and it has left me with no libido or desire and very short tempered, I also have sleep problems. My GP refused to let my oncologist refer me for counselling because he says I don’t need it - I managed to remain positive all the way through the treatment and says I need to just be positive again and get on with it. I was referred to a consultant gynaecologist for the menopause via my onc last week. She was appalled by my GP’s attitude and is writing to him to say she too is recommending I be allowed some counselling to get me through the last push.
What is it with GPs at times? I was sent off with a flea in my ear and 2 weeks worth of Tamazepam.
Hi to you all
Thanks for all the support it is what I really need right now.
Serendipity
I do not know how to whisper back I am afraid could you explain please. I have read the article you suggested and there is loads of relevant stuff in it, I think I will print a copy and give it to those I have mentioned.
owls4eva
I know what you mean, someone told me it was a good drying day the other day and I wanted to strangle them, then I just felt sorry for them because really, they have no idea how trivial and sad that is. have not been to a support group meeting as yet, might pluck up the courage in the near future.
Magsi
Your comment about people putting pressure on you is so true. I think they are well meaning but they do not know how it can bring you down. It makes me feel inadequate when they say these things as if I am somehow at fault because I have not “come to terms” with it yet.
Lambkin
Thanks for the hugs and good wishes. Have they held your job open for you? I have still got a job to go back to, so far, but I have still got to go for a work focused interview at the job centre next week otherwise they are going to stop my incapacity benefit. The letter says it is to advise me of the health, social and financial benefits of work. Are they real, if I was well enough I would be there already.
Angela07
I am glad to hear that your counselling is going okay, I have arranged for a peer counsellor to contact me from breast cancer care.
Cherub
Sorry about your GP think he needs a personality transplant. My GP has been very good but he says that government regulations have made it impossible for him to refer me to a psychologist, but that I would have to be referred to the mental health team first and that they would give me some assessments to decide whether I should see someone, which I do not fancy doing as I have had enough at this time without someone assessing my mental health thank you very much. So I am still trying to sort something out, might mention it to my ONC when I see her.
A couple of years ago a poet who herself was dx with BC wrote this poem .Its one of my firm favourites -just because it says all of the things we feel but are meant to ignore somehow. A cancer diagnosis -no matter how small the cancer- is devastating . But sometimes others dont appreciate this
FREEFALL
Hurtling unprepared through frozen air,
Propelled in unrestrained and undirected flight,
The ice-rope slithers through the hand,
A momentary grasp,
No crampons to give grip.
No way to know if it is going to be
A gentle slope or headlong slippery slide;
No way to know how long it lasts
Nor how it all will end,
The only certainty that once begun
There can be no return
To that clear and firm plateau
Where others walk unknowing
The ravening crevasse beckoning below.
Some find the precipice and peer
To watch the downward feared career,
And wonder how it feels to fall so far.
They cannot hear the falling calls,
The breath choked in the throat,
Nor feel the loss of ground beneath the feet.
There’s no exhilaration in the slide,
The slick and sickening helter-skelter ride:
The waking sleeper’s horror finding nightmare real
Only knows the terror of the fall.
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Hi unafitz
Thanks for the poem, I think I will give a copy to a few people. It gets better the more I read it.
Hi molennium
My GP has been very good to me, even does the zolodex injections for me so I do not have to go to the ward where I had chemo and I could not face going in again and that was where my ONC said I had to go as she said most GPs will not do them because the expense comes out of their budget. However I think that cherub’s GP is definately someone who I would not want to see.
It is an article written by a consultant clinical psychologist to explain the emotions we go through after the treatment has finished, and why this can be such a difficult time. It is quite long, but well worth it. You may find it useful to print it off and give to those who think you should move on. I gave a copy to my boss, as well as family, so they would understand that it is not over when the treatment finishes.
In Sept. I bumped into someone I hadn’t seen since I told her of my diagnosis in May. I had just finished Chemo and was waiting for Masectomy. I had my wig on as was completely bald when she said she liked my hair that colour and style, I laughed said it was a wig she asked why and I said because of Chemo. She replied was I still on about that, I think she thought Breast Cancer was like the flu and should all be over and forgotten about in a couple of weeks, I finished Rads end of Jan. and still get tired walking a short distance, havn’t seen her since.
Yes Valxx, unless it touches peoples lives personally they usually have no clue about it, I know I didnt.
I,m sick of people saying " Gosh you are soooo brave " you smile sweetly and say ohh I,m not really .
What you really want to do is scream " Brave, I,m bloody shitting myself"!!!
Love Andrea x .
Hi, ive only just started my rads and was asked last night if im “opting” for all this treatment!!! cos its going on forever, also the same person told me to get over it, and think of others, her mothers friend has just been diagnosed with BC in both breasts and spread to lungs and bones and they wont give her chemo, of course i was sympethetic, but this person i was speaking to then revealed this other lady was in her 80’s and i should feel lucky the hospital was trying to save my life!!! im 35.
Please tell me im right at being upset by this person
Anna
Hi Annamarie,
I think its almost impossible not to be upset by such comments and I’m sure we have all had similar. Even my husband tells me I’m lucky because I didn’t need chemo only mastectomy and rads - I think in saying that he is really re-assurring himself . Yes compared to others I am but compared to where I was last year I’m not.
Its all relative isn’t it ? And of course comments are made to us when we are still feeling very vulnerable despite the fact that it may be several months or even years since the original diagnosis.
At least we have this site where we can be real and are able to share with others who understand where we are coming
from.
Magsi
Before Christmas an aunt of mines told me about a neighbour’s daughter who has breast cancer. She finished by saying “I mean though, compared to you she has been really ill because she had a mastectomy”. I said my goodbyes and left. Thsi aunty is 85 and has been a hypochondriac all her life, as is her daughter. I stopped seeing them when I was ill because it just gave them the opportunity to tell me all about their ailments (aunt injured her arm a few years back and maintains she can’t use it, yet it doesn’t affect her life - when I mention my arm it gets in to a “my arm is worse then yours” conversation). I just dropped anyone who was toxic like that as soon as I found out I had BC.