have been through lumpectomy. lymph node extraction, chemo and now going through rads. Have just been told I need my ovaries out as can’t have tamoxifen and have really fallen apart.
Just want it all to be over and yet every time I feel it is ending something else comes up and destroys me again.
Feeling so low and isolated at the moment. The friends that were there for me 7 months ago seem to have disappeared.
is there anyone who has been through this as well ???
K x
Hi Kay
Well you have given me enough support, so l thought l had better get on and give you some!
Although just words that cant help in any practical way, but l hope they help you from feeling low and isolated.
Although how can you be isolated on this forum, always someone comes along and supports you.
Was there any mention of the ovaries before? or was this out of the blue! either way it is an absolute pain and the last thing you need after all you have been through, you think you can see a light at the end of a tunnel and someone turns the b****y thing off!
Strange with our friends, l am only 4 months down the line, but l have noticed some of my friends make the odd call, the ones l thought would stay the distant have so far proved to have done just that. But l have had the odd few who find it easier not to think about ‘it’ wish l could not think about ‘it’
I don’t think they are being nasty, just people carry on with their lives, l went through bc with a friend over 10 years ago, and while l was with her at every appointment, and all through chemo and radio. l can honestly say now, l never really understood what she went through! It is only now!
Just looked at your profile, see you have three childrens, how old are they? and a tortoise, l also have a tortoise, how old is yours? mine is over 45 years and a male called Toby, he was called Homer for 44 years, then l got him and grandsons didn’t like his name, hence the change.
Hopefully someone will come along with some useful information for you, until then l send love and hugs to you
Sandra xxx
Hi Kay
Sorry to read that you are feeling so low at the moment, please do call our helpline for further support and ‘listening ear’ which may help, the number to call is 0808 800 6000, weekdays 9-5 and Sat 9-2.
Take care
Lucy
I am sorry you are having such a tough time. Cancer really sorts out who your mates are and who is worth bothering with. I have been astonished by the unselfish support of some and hugely disappointed by the behaviour of others. On the plus side it makes the Christmas card list much shorter.
Having your ovaries removed is usually a very simple procedure - a day admission unit jobby. No pain. 2 tiny stitches. Out of all the stuff I have had done it is the part I actually forget about because it was so uneventful.
Being tossed into surgical menopause is no picnic though.
Good luck with it all.
Hi kay
It is never ending is it? Just when you get your head round one aspect of all this s**t and another one appears to floor you!!
With regard to ovary removal, the operation itself is very straight forward. I had mine removed last year, it was just an overnight stay. It was keyhole surgery and 2 tiny incisions, I was recommended to take 2 weeks off work, but felt a bit of a fraud as I didn’t have any pain at all, a slight pulling feeling if I was doing things I had been told not to!! In fact it must have been exactly this time last year because I remember sitting relaxing watching the whole Wimbledon tournament, something I hadn’t done since finishing A-levels!
I had one bad day the following week when I guess my sudden oestrogen loss got to me and I cried all day. Then had no real side effects after that at all. I was changed to Aromasin then.
I am sorry to hear that you feel that your friends are not there for you, as others have said, they are probably just too busy. Can you arrange a get together and let them know how you are feeling? I know if I found out that one of my friends felt low and I hadn’t been there for them I would feel awful. They would too, sometimes it’s hard for friends to know what to do, they are often not wanting to instrude but are waiting on the sidelines waiting to be asked if you need help.
Take care I really do feel for you,
Remember to use your new ‘cyber friends’ who are there for you!
Nicky xx
Hi Kay,
I’m really sorry to hear you have not yet finished. From what people have said the op doesn’t seem to be too bad, but it’s the thought and the results that are not much fun. I am facing the op later too, but I will not know if I need it until August, when I get my gene results back.
As for friends, I am so sorry some of them are not longer there, I find I have to rekindle things from time to time, just organizing an evening out or coffee or something. My friends mostly live a long way away, so there is no popping in and out anyway.
Any way we are all here for you
hugs
Maria
Thanks for your messages. I keep telling myself to stop feeling sorry for myself and that the op is simple but still finding myself in tears !!
Sandra - knew there was a chance that I would have to have them out but it was still a bit of a shock. Yes I have 3 mad kids, Adam is 21 and just finished uni, he will be starting work as a paramedic in Derby next month. Glen is 16 and is a bit of a nightmare. He has special needs and can be very difficult !!! Mary is 10 and is a little poppet, she was my little miracle child as had her after I was sterilised. My tortoise is 7 and is called Tortilla (red wine moment !!) He lives indoors in a vivarium and is totally mad. We also have a hamster called raticus. She was originally called misty but got nicknamed raticus by a mate and it has stuck.
Just spoken to hospital and it looks like my op will be the day before my birthday. Great !! They are checking to see if they can move it for me.
Take care
K x
Hi Kay
Have no experience of what you going through as triple neg but just wanted to say don’t be hard on yourself - not much wonder you are teary. Just let them all out your deserve a good weep and better out than in. None of us asked for this b… disease. Your kids sound lovely and will help you get though the next stage of your treatment.
I do hope they can change your op date and wishing you all the best.
Love and hugs Anne x x
Kay you dont have to do anything you dont want to… what are the reasons they are giving you for ovary removal?
i see you are saying you cant have tamox if that because it interferes with other health probs or medication?
you can ask for an appointment with a counsellor and this is often recommended for women having prophylactic treatment… you have every right to feel sorry for yourself and i remember feeling like that back in january when i found out i was a brca2 gene carrier and would benefit from oophorectomy…but dont feel pressurised or rushed into anything.
i was seeing my gynaecologist yesterday as i am opting to have my ovaries out as the brca2 gene causes breast and ovarian cancer… but its entirely up to me whether i chose to have them out or not…
im in a bit of a dilemma myself though too as i have the option of ovaries and tubes out laproscopically or having a hysterectomy as well which would be done through an open procedure with a 3 month recovery.
it took me a couple of visits to the psychologist and lots of soul searching to come to my decision (also having bilat Mx at end of the year too).
take care sweetie
Lxx
Hi Lulu,
I have got a blood disorder which means I can’t have tamoxifen. I guess I do have a choice but feel that anything that will help prolong my life I will do as I have 3 kids I totally adore and want to be with them as long as possible. Very scared about it coming back if I don’t go through with it.
Have just spoken to the surgeons secretary and have to see him tomorrow. She has told me he will give me the same option as you re hysterectomy. In some ways think I might as well as won’t be having any more kids but financially don’t think I can do it as would mean even more time off work and already been off 7 months.
I am so sick of all this and want to go to sleep and wake up when it is all finished.
K x
you may find that there is a waiting list so you would have to go back to work before you would take the time of for the surgery… i only started a new job last month and not really wanting to take a lot of time off but as my BCN said to me if it wasnt about money/work etc what would you do?
it will prob be august before i can have surgery but still not made my mind up.
is zoladex not suitable either with your clotting disorder? not sure if it is contra-indicated in bleeding disorders but may be a good alternative to consider before going straight to oophorectomy… it would certainly give you a bit breathing space to decide how you want to proceed.
Lulu x
so sorry that you have to go through more surgery! Ive not had my ovaries removed. Although i do have my endometroisis back, and am waiting to see what the dr says about my ovaries. (Mine are always covered in endom)
eva
Hi
Just to say I’m so sorry you now have this to face after everything else, it must feel like it’s never ending, & they just never seem to have anything good to tell you, just another kick in the teeth. It may be a small op., but it’s just the grind of it all, on & on, with you struggling to get up & feeling like you just keep getting knocked back down. No wonder you feel tearful, why wouldn’t you ? Don’t worry about feeling sorry for yourself, you’re well entitled, & as for friends - we’re all here for you.
Thanks for your most recent p.m., I will respond soon, but hope all is going well meantime.
It’s such a worry with work too isn’t it when we need the money & don’t have many options. I was off for 8 months myself, & didn’t really want to go back when I did. It seems such a waste of time now, but I need the income so got no choice.
Try to keep your spirits up, remember, we Leo’s are strong old pussy cats !
Hi all
saw surgeon today and operation booked for 16th July. Just ovaries though. My oncologist had rung him and told him the op was urgent due to the grade of cancer in my breast. That worried me slightly but at least it will be done soon.
Feeling a bit braver at the moment probably due to the 2 glasses of wine !!
K x
sending big hugs Kay
and also on the wine tonight so will raise a wee glass to you.
Cheers hunny
Lxx
Hi Kay,
Whatever it take to get it done quick! and after all your ovary removal is more urgent to someone just having there ovaries removed, so that is probably how he meant it, well that is what l would like to think anyway!!
I will also raise my glass or orange juice to you
Cheers and Hugs
Sandra xxx
PS. well you have your hand full, and a miracle child! she must be very special, as they all are!
My tortoise lives outside, does yours ever go outside, have only ever had garden ones!!
Love the pet names, my Toby is a bit boring, but then again he was named by my 5 year old grandson!! xxx
Hi Kay,
Whatever it take to get it done quick! and after all your ovary removal is more urgent to someone just having there ovaries removed, so that is probably how he meant it, well that is what l would like to think anyway!!
I will also raise my glass of orange juice to you
Cheers and Hugs
Sandra xxx
PS. well you have your hands full, and a miracle child! she must be very special, as they all are!
My tortoise lives outside, does yours ever go outside, have only ever had garden ones!!
Love the pet names, my Toby is a bit boring, but then again he was named by my 5 year old grandson!! xxx
My thoughts are with you. Be thankful they are taking you seriously and doing it quickly.
All the very best for the 16th.
Hugs
Maria
Hello Kay,
Best wishes for your op on the 16th.
Thinking of you I hope things get better for you soon.
Isabelle xxx