Some partners "do get it"!! Hi Nessa,
so very sorry to read of your struggles in trying to get well again.
I was dx 4 years ago with invasive bc, and at the time was going through a bad flare with Crohn's disease - the dx of bc threw me into a steroid induced psychosis (which is very rare and often suicidal) and I was nearly sectioned. It was a very bad time for my husband and I and we nearly split up. He thought I was mentally ill and couldn't understand that I knew I was out of control mentally but couldn't control it. Somehow we got over it.
However, after getting the police involved late one night, and me fleeing to a neighbour's apt, we slowly got things together, and since then he has been my absolute tower of strength. He "got it" very quickly, after helping me deal with Crohn's for some 32 yrs. I can talk to him about my bc, which is not nearly as complicated or embarrassing as Crohn's, and he went with me to every chemo and surgical appt, although he is 78 yrs young, and disabled.
I have a "soul sister" friend in America, whom I met when we lived in Spain for some years in the 1980's, and she has been the carer for her husband who was dx with stage IV terminal lung cancer 6 years ago. He even picked out his burial plot and she had to arrange for funeral directors. He has proved all the medics wrong and is still here today, at 78 yrs old.
Besides my husband, she is the only person I can "talk" to about cancer (via internet or phone and occasional visits to and fro across the Atlantic) other than my husband. She has been there and done it, like no-one I know. Her husband had a lung and kidney removed, but now, some 6 years later, has mets to his remaining lung. I am now giving back the support and caring she gave to me.
I think, because of our very nature, it is somehow easier for women to empathise with illness and identify with a close partner, relative, or friend, than men. That just seems to be the way it is. I guess I just got lucky in my husband, who absolutely understands my complex medical problems and is always there for me. However, I don't talk every day, or even week, about my health problems, just occasionally when he needs to know certain information. He always asks me every single morning: "How are you feeling today?" I always try and say:"Just fine", because I don't want my illnesses to take over and control our lives.
As for other close friends - they do still ask how I am - as I am in remission for bc (and no-one wants to know the nitty gritties of Crohn's problems) I just smile and say I am okay. It is the only way I know how to cope.
Some 2 months before I was dx with bc, I met a young Scottish lady living in San Francisco, on an American internet hospital Crohn's forum. She was in the process of being dx and e-mailed me privately for information and advice. That was the start of a wonderful friendship, albeit some 6,000 miles away. Within a few months I then got breast cancer, and she pancreatic cancer, so we had even more in common.
We e-mailed each other at least once a week, with details of our lives, which were so different (I was 58, retired from business,she 35, with 2 young kids and working full time for a charity that helped abused children) and could discuss our Crohn's problems without embarrassment. Sadly she died this past January and I miss her e-mails terribly and the involvement we had in each others' lives. She was planning to come and visit me in Cornwall this summer, with her two young children and husband, but sadly that was not to be.
I think you may be surprised if you reach out to other people, what genuine friendship and caring there is in the world at large.
I sincerely hope the counselling will help you to come to terms with your illness and allow you to move on with your life, as you are relatively young and have a long future ahead hopefully.
. Thank you for your kind reply.
I have felt a bit better these last few days - and having just got my first period for a year (!!) I think that may have been the cause of the deep depression. No use charting my cycle as once a year makes the pmt a bit long 🙂
I have signed up for counselling but due to my period being so bad I can not make the assesment day - typical.
The pains are a bit better but the doubt remains, I have also made an appt with my (lovely) gp to discuss my fears and hope I am brave enough to tell all.
It is good to know people are here to chat to, the site i used to use has gone all wierd these days and I have lost a lot of people that used to post - I shall migrate to here in future and try to be of help to others as you have been to me.
Love to all.
Oh Nessa, Sweetheart. I am so sorry you feel so scared. I can't help you medically or from my experience as my mum is the one who has BC.
In you question does non Cancer people 'Get it' do you mean understand - If so then they certainly do and I am sorry your partnet doesn't understand your fears. Maybe its their way of coping too and by letting you discuss your fears it will open theirs up too.
Have you spoke to your doctor or hospital about counselling - They are fantastic people and really do help you get perspective onto life again and give you the strength you need to be you.
Please try this route - Life is for living and not fearing. Make your doctor listen and get him/her to understand your fears which again will affect your wellbeing and may well even be causing the pain - Stress is a funny Bugg-at-r!!
Nothing can take over your life unless you let it - So don't - Grab this fear with both hands and make it go away by using counselling, support groups and getting the confidence to get what you want!!
just been reading your post and i could have written it myself, as i know just where you are coming from. i was dx 11 years ago this may and have not been able to work since due to my constant obssesion with thinking what if? like you have no one to talk to about it only these forums which i only found late last year . i also convince myself that with every pain cough or headache that its coming to finish me off and then feel guilty about having these kind of thoughts, i still have to see onc every 12 month and feel stupid mentioning trivial things that some how have got blown out of proportion in my mind , but cant speak about as i would worry every one close to me!. hope it helps to know that your are not the only one with these feelings,
take care my friend
Thanks again everyone It is good to know that others feel the same and understand. I have been here before with the worries, when I was working full time I actually got to the stage where I forgot appts at the hospital, to the point where they would ring me and remind me! Amazing, but now I am home all day I seem to be getting worse each day.
I am now not fit enought to go back to work as bad thoughts have worn me out.
I am also convinced that my liver is affected as the pain in my ribs is also joined by shoulder pain - which (thanks to the net) I know is associated with the liver. The internet is a blessing and a curse!
I have had a really bad tooth infection for over a year now and at times think that is making my liver vunerble but can not afford to get the tooth sorted. (no NHS dentists round here)
I am trying to see my doctor and be brave enough to admit to my fears, I tend to wimp out when I am there as I realise how daft I sound.
Likewise although I have tried counselling I fail because I can not let the 'brave face' slip in front of others.
At the moment I dont really know what the answer is, I just seem to be living my life in fear and it is stopping me living my life!
My son sort of understands as he was an addict a few years ago and now he worries about pains being related to that point in his life and damage he may have done, but I can only talk to him so much as I dont want him to have the stress of worrieing about me.
What is best ? surround ourselves with people from 'our' world or people who have no contact, or inside knowledge of cancer? sadly these people are becoming less and less. I had one friend years ago who made the best comment ever - she said 'I have absoloutely NO idea of how you feel, but i am here for you' Much better than those who tut tut and say 'I know how you feel' - they dont!
Sorry for rambling, i'm up too early !!
I don't think 'non-cancer' people ever do get it.
I'm still in treatment but have recently been having nightmares and dark thoughts about recurrence/mets and have tried to explain to family and friends how it feels to face the rest of my life living in fear.
If I hear the phrase 'but any one of us could get cancer' one more time I will scream. I'm sick of telling them my chances of recurring are far greater than their chances of getting cancer for the first time. But they just seem unable to hear it. I guess people's perception of how they think THEY would be in our shoes is just too different from how it actually is.
My advice would be to request a referral for a scan which I don't think you will have trouble gettting as the protocol now is no scans unless there are symptoms. As you have symptoms (even though the likelihood is it is something else) you should be tested.
If your scans are clear but you still find yourself obsessing about recurrence it may be worth considering counselling. No-one can tell us our cancer won't come back again but a good counsellor will be able to teach you techniques for refocusing your mind on non cancer related things.
Sorry you are feeling so alone at the moment.It seems to me that 3 yrs down the line everyone wants to forgot l had breast cancer.This is there mechanism-sub consciously- for coping with the trauma of what could of happened .However we sometimes get faced with worries about has it come back when we get aches and pains.Its something we have to find a way to live with.I had some counselling and this helped a lot-but it still worries me-as my recent posts show-had decided l had secondaries and planned funeral etc.SO maybe you could get some counselling where you can be open and not feel you must not say things for fear of upsetting partner.Also Breast Cancer Care have a peer support system and this might be very valuable for you as you would be matched to someone with similar history and you would be able to talk in complete confidence.
always come here and we will support you as well.L can honestly say l know how you feel.
hugs sharon x
Nessa joint pain is probably due to lack of Oestrogen. Most people over 38 have some osteoarthritis.
Nobody understands br ca neurosis except other br ca victims- your partner is probably doing his best but like all non sufferers believes in cures - thinks you're done and dusted since your onc signed you off.
If GP no help with bone [not joint] pain phone Breast Care Nurse and tell her about BPs.
Best wishes, dilly
Thank you Thanks for your reply,
I dont actually have an oncologist - I had a Surgeon that I used to see and a breast care nuse
Now I have been discharged I get a sort of 'ho hum' reply when I ring with worries - my doc is very good and I shall talk to her about it.
I am not on Tamoxifen anymore - can it still cause/have caused damage?
What I meant about a partner 'getting it' was not can they catch it - lol I mean do they ever fully understand why we still think about it? Mine thinks it should be over and done with by now!
He doesn't talk about it much as he doesn't understand it, he can explain most things as per the book, so I shouldn't worry about things that aren't there.
I shall look into the suplement thing when I see the doc and get the results of my x ray.
Thanks for your help and I shall think about ringing the helpline next time I get the brush off from him indoors.
Nessa pain in bones needs a bonescan/MRI so you must push for one. Phone your onc's sec [don't mess about with GP referral], tell her about bone pain and ask for an immediate appt.
Try not to get too worried about bone metastases -though they sound terrifying they won't send you off to the pearly gates and can be controlled by bisphosphoonates.
Your hip pain sounds to me like osteo arthritis damage to joint. Try to keep hip moving while waiting diagnosis and go to your GP for helpful medication. OA is due to cartilage damage so you can help yourself by taking Glucosamine- on line is cheaper and I find + sulphite much better than +Chondroitin. You'll need to see if it helps and which sort suits better. Starting dose 1500 mg daily- but would recomend twice this for a week or two.
Joint pain [not bone pain] is often caused by hormonals -Tamoxifen, Arimidex etc. If you're on A you should be taking Fossomax/Alendronic Acid for bone loss [GP will prescribe].
And no partners don't catch cancer from their ladies.
Get on the blower for onc appt pronto, best wishes, dilly
For Nessa Hello Nessa,
I am sorry to hear you are so lonely and worried, the Breast Cancer Care helpline is available to you where you can talk in confidence to the trained staff who are either breast care nurses or people who have experience of breast cancer so you can talk about both technical and emotional issues. Do give the helpline team a call on 0808 800 6000 the lines are open now, Monday to Friday 9am - 5pm and Saturdays 9am - 2pm.
I am sure you will also get lots of help and support from the many users of this site.
I hope this helps.
I'm very frightened and have no one to talk to Hello all,
I really need to talk to some people who understand, I had BC 6 years ago.
Lump/rads/tamoxifen no spread - so why am I so scared?
I can not get certain pains out of my mind and having been discharged from the hospital I am very unsure who to see about them.
I think I just want someone to tell me it s 'normal' to worry all the time. My partner does not really understand and every time I try to explain that I am frightened it ends in a row. In a bizzare way I feel I am being punished for 'exposing' my fears.
I have terrible back pain, yes I do have damage to my back but it is not that bad, and the doctor usually puts the extra pain down to stress, saying my surrounding muscles are tense.
I also have rib pain on both sides, (rad site on one side and lower rib on the other) sometimes it is so bad I have to go to sleep to make it go away. Occassionally it occours after lifting something as mundane as shopping.
I spent three years as a chairty shop manager and lifted things so much heavier!
I now have a strange pain in my pelvis - it means I can not lift one leg to put jeans on or cross my leg without pain. If I try to let my legs fall apart, one wont go without hurting. I have had an x ray but no results yet.
The bones in my shoulders hurt and I sometimes put that down to age (46) and sometimes think it is a knock on effect of the surgery (lymph) making my body lop sided.
I am now convinced I have bone cancer and lie awake at night feeling like it is my last night.
I never had a bone scan as there was no spread, so no need.
The thing I need help on is - does a 'non cancer' person/partner ever actually 'get it'?
And also - are these pains something I should worry about and who on earth do I see?
I feel that this wretched thing is once again taking over my life.
I do not have friends I can talk to as basically there is no one anymore, iI lost everyone when I stopped working.
I feel so lost and lonley.