Breast cancer

Affected by breast cancer? Join this group to share experiences and ask questions to people who understand what you're going through.

AWAKE.........

HappyFeet1
Posted by

Well that is surely a load of b*******. What on earth was the point in seeing you at all if they have nothing to offer? Nothing even to try?? Sad days indeed.... HFxx

HappyFeet1 xx
Don’t be afraid to cry. It will free your mind of sorrowful thoughts. – Hopi
grannylara
Posted by

So sorry Sal, , what a load of rubbish, no one seems to be telling you anything you don’t know, and no one seems any help. Surely some be with half a brain would say this lady really needs help, we will do our best to help her out. There must be answers somewhere. Xxx

Love and hugs Jenny xxx

“ We don’t know how strong we are, until being strong is the only choice we have.” xx

Lacomtekp
Posted by

I can't understand why no one has any suggestions.......surely you can't be the only one who has had difficulties with these drugs? Have you had a break before?  I don't know anything about what these drugs actually do......if you have a minute sometime to explain them Londonlass, I might not be the only one. Lots of newcomers on the site lately. Will the break help or not?

It's seems such a waste to go and see a 'trainee' however much she was interested.  It was a locum who missed the warning signs for my neuropathy while my oncologist was on holiday. I know they have to train but it's your life they're training on.

I hope you don't feel too fed up tonight. At least some cooler weather will help a little. .......Had you tried the bamboo nightwear? I really do feel a lot cooler in it and it's warm if I get cold.

Bank holiday here tomorrow.  Luckily it's warm and sunny. My husband wants to take me out to lunch.....I might let him.....

Take care of yourself. Cyber hugs....

Love Karen

LondonLass
Posted by

I’m not going to waste anymore energy on discussing what happened at my appointment today! Although I will explain more about the drug and taking a break, tomorrow Karen ()!

Instead I wanted to share with you, something I wrote in my journal last night. After sharing the picture with you yesterday I thought I would share this.....

A Special Little Sleepsuit

My Dreams
My Hope's
My Purpose
My Heart
My Love, all my Love.......
That's what this little sleepsuit means to me!
No tiny fingers
No tiny toes
No little heartbeat and
No button nose
Just a soft cotton suit and
A soft fluffy bear.
Leaving a 'could of been' mummy
With heartache to bear xxxxx

I spoke with a lovely lady at the hospice today, who said buying the Sleepsuit wasn’t weird and that if it helps me to grieve then it has to be worthwhile. She suggested getting a Special box to put things in, then if I wanted to get anything else I could! Made me feel a lot less self conscious and feeling weird about what I had done! 

Goodnight my friends, Sleep Well Fruit Loops xx

WhatHappened
Posted by

Owww Sal, ,

These words show us of your headache, it is here for all to see, 'it may be a sleepsuit' to someone selling it in a shop or someone looking at it on a rail for sale in a shop, this little sleep suit was put there for you to see and find...

Reading your words shows just how much, more, much more, it is than 'just a little sleepsuit'.

I will say reading your words made me think and fill up, please you Sal, you will get through this, its going to take time thought - and we are here for you.

I think you should type and print these words on some special paper, even frame it and keep them with the sleepsuit.  

Reading your words certainly opens up just how important a place your little sleepsuit holds deep inside your heart.

Wishing you and all the Fruit Loops a peaceful night with restful sleep, xxxx 

AnnJac
Posted by

I dont post in this thread usually, not because I don't care or admire you all,  but because I usually try and keep away from internet at night.   

But just wanted to send my hugs and love through this difficult time for you. 

In case it helps my God daughter who had a full term baby born sleeping she found huge comfort in raising awareness of still birth to help other people and to promote more research.  Now I realise this is totally different but might fund raising and raising awareness etc into childlessness help you a little  - at the right time if course.  The recent fund raising you did seemed to give you a huge amount of satisfaction.  A way of focussing your grief?  

I just wanted to add my hugs and love and hope you begin to feel a little better soon

Anne xx

Snowys Mum
Posted by

Hi Sal,

Hope I'm not saying anything to make matters worse but I think there's nothing wrong with buying baby clothes, and you can buy those beautiful dolls online that look like newborns. I've always wanted one myself to be honest.

Also my friend works on a special care baby unit and they have volunteers who go in just to hold the tiny babies...I would like that as well. 

I will say nite nite now hope I've not said anything stupid xxx

Helen
Frankies_Ducky
Posted by

I don't want to add to your grief but I couldn't sleep without letting you know that I admire you for sharing how you feel at such a difficult time. I've never told anyone about what I'm about to write before now. I hope it comes across as intended, with heartfelt understanding and nothing but love.

When I was 17 my first born son was born too early after 3 days of intense labour and many complications. Despite many attempts to get him breathing, his tiny and undeveloped body couldn't cope and I lost him. Due to the complications, the doctors said I would never be able to have any more children. To say I was devastated is an understatement. I'd wanted 4 and I'd even chosen their names. I had bought many little outfits for him and although they were never going to be worn, I couldn't bear to give them away. For 3 years I cried myself to sleep cradling them before I was able to put them away. Miraculously, I got pregnant when I was 21 and after being constantly monitored had a little girl, who was 3 days late and is now a mother herself. By the time I was 31 I'd had 5 miscarriages (all boys according to the doctors) and I lost hope of having any more children. At 33, another miracle happened and I finally had another son. Unfortunately his birth was tainted with sadness as my father died just before he was born.

I know my experience isn't the same as what you are going through. But I do know that your grief is very real and valid. Please know that my thoughts and love are with you.

Much love & gentle hugs, Frankie xxx

Sometimes painful things can teach us lessons that we didn't think we needed to know. - Amy Poehler

I'm only focusing on the positives of the things I can control - as for the negatives of those I can't, well they can do one as life's too short to worry about them!!

moomy
Posted by

Dear LondonLass,

those words are just lovely and I too think you should have a pretty box to put those special things in, with the words typed out on a pretty paper.

sending hugs xxx

Moomy

grannylara
Posted by

Sal, , that is so beautiful, bought tears to my eyes xxx

Love and hugs Jenny xxx

“ We don’t know how strong we are, until being strong is the only choice we have.” xx

Lacomtekp
Posted by

Londonlass......if we were ever in any doubt about how you are feeling those beautiful words sum them up.......I love the idea of the memory box.....( I wish you lived nearer because there is a beautiful one in a local shop....white with large pink Rose's and ribbons. I would treat you.)... ...and I think you should add some of your special mementos of the children you looked after too. I think you are grieving having to stop doing a job you loved and gave so many years too as much as not having children yourself. Putting those mementos in a special place might help.

Normally, we would say to you to take all the time you need to grieve these losses....years if necessary.. . but perhaps in your current situation that isn't the best advice. I have been reading a lot since Tuesday in an attempt to understand the problems caused by your treatments and the menopausal symptoms.  I read French and thought I would look at what the French health service has to recommend.  I'm sure you've read everything too.The French system is more preventative in it's approach than the NHS. It is also very caring  in circumstances where treatment was necessary.  I know the NHS is valued but it is certainly a postcode lottery.....Annjac is an example here.....So looking closely at the suggestions, the French definitely don't recommend taking any normal menopause alleviants for breast cancer patients although there was some mention of sage? However, .....and you know what I going to say.....they really did recommend the removal of the ovaries to improve the quality of life. Their argument was that with the menopause childbearing will be unlikely but where menopausal symptoms are ruining your life, the op could allow the sufferer to start living again. I was thinking that for you London.....whilst your bone mets are stable....a reduction in the symptoms would improve your sleep, therefore your energy. Might it possible that you could do some voluntary work at a nursery if you felt better? Or foster a child at weekends? Because you feel so awful I guess it's impossible to tell but would it be worth taking the risk? 

I expect you ( and possibly other fruit loops) will think I am being insensitive here but I am very worried that you are losing something as precious as the ability to have children.....time. Quality of life is one of the fundamentals to the French health service......but you can't have that quality if you feel physically unwell all the time.

I'm sorry I couldn't offer you a solution that you haven't already been offered. I do understand much better your dilemma than I did on Tuesday. I know grief shouldn't be rushed but sometimes ......sometimes we have to do the things we don't want to make things better in the future. 

Go out and choose that box ......or create one....do you keep your children's drawings that could decorate a shoebox...?.This could make the box really special and something you could celebrate later on . I have the picture from a little boy in my Sunday school class on the fridge door. I don't  have grandchildren ...... My sons have all decided for various reasons they don't want to bring children into this self destructing world and respecting that, I have share everyone else's....

I had better go now. My husband is suggesting lunch out but I'm not sure as it will be sunnier tomorrow. 

It will be sunnier for you tomorrow Londonlass........

Cyber hugs. Take care of yourself.

Love Karen

LondonLass
Posted by

Karen () Sat here crying and feeling blessed at having such amazingly wonderful friends. Your kindness has touched my heart. Particularly today when I am feeling so low!!

i think i have stopped the Venlafaxine too quickly! Don't get me wrong I didn't decide when to stop the GP guided me, however she was doing it with the thought that I would be starting the new drug, she even said shes reducing it quicker than normal. Of course now I'm not taking any new drug and boy is my body punishing me!!

Headache, fuzzy/dizzy, feeling sick  and of course the flushes/sweats oh and my Blood Pressure seems to be all over the place! Oh and no concentration!! Already taken 30mins to try and write this......I apologise now if this makes no sense!

Karen one thing that Exeter seems sure about is I don't NEED an oopherectomy (ovary removal) but I suppose the bigger picture is  surely this should be about what I want or NEED!!

They are telling me I don't need the one thing that could help with the menopausal symptoms and yet they are the ones saying "sorry there is nothing else we can do"!! 

I am going to speak to the acupuncture lady who has offered to try Full Body Acupuncture to see if that helps. If not, during those weeks I will work on my feelings re not having children with the counsellors help. 

Then if theres no change I will hopefully have a secondary breast care nurse by then and will chat to her and armed with as much info as I can gather I will go to see the onco and TELL him I would like to see someone about having the surgery!

Whatever happens I can't go on like this and I don't ever want to feel like this again!!

moomy
Posted by

Bless you, dear LondonLass,

like AnnJac, you’re having to be your own advocate and it’s sooooo wearing! 

Keep talking on here, if need be then print out the whole thread and let your new nurse read it!!!! As your feelings come over very strongly and really should be recognised by those folk who are medically caring for you. And about caring. When did the NHS give up caring? As it doesn’t seem to these days.....

sendinv you love and hugs xxx

Moomy

wombat.23
Posted by

,

Don;t ever stop posting - this is your thread. I think a memory box is a nice idea - fill it with special things. 

I find it hard to empathise with you, because as you know I have children, so I find it hard to imagine what it would be like without them. But this thread is all about supporting and being there for each other, and we are all here for you, even when I don't post that often anymore. 

I don't regret one second having my ovaries out. Better that than putting up with the zoladex injection every month! I don't notice any hot flushes any more. Op is really simple and straight forward too. 

Can I share my good news today without appearing too insensitive because it is about my daughter? She got into university today, her first choice, very, very proud. 

Cwtches to all,

Gay xxx 

LondonLass
Posted by

CONGRATULATIONS () Gays Daughter! Wonderful news and definitely something to celebrate!   xxxxx