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mastectomy & recon on 22nds Sept - totally Terrified aged 38

Jennyg
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

thank you .... will add to this 'journal' a little later tonight as I MUST make a start on the tidying up !!

sofadoc
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

Hi Jennyg
I am sorry that you are having such a rough time coping with things. I had a mastectomy and bilateral diep flap reconstruction 8 weeks ago and was absolutely terrified going in to the surgery. My op lasted 14 hours and I spent 5 days in High Dependency Unit and another 5 days on the ward. It wasn't pleasant, but I got through and while I would not do it again, am glad that it is done. I am getting chemo now.
Anyway, the point is, it's not pleasant, but it needs to be done and you will get through it. Thing is how to make it better for yourself. Things that worked for me were relaxation/ visualisation. Pick a CD of relaxing music ( start from now), take nice deep breaths in and out(don't forget to breath out) and then just try to visualise something that calms you - like sitting on a quiet beach at sunset, listening to the waves, lying on your back in a grassy meadow with youur daughter watching the clouds, Think of taking control of your fear - holding it and putting it in a box and putting it away and taking out a box of calm. After the op I spent a lot of time visualising myself in a healing pool of golden life elixir and imagined my body pain free and healing. It kept me calm, let me sleep and recover and passed the time. If you use the same CD all the time, after a while you will find that you automatically calm down when you put it on. By the way the Maggies centre offer a relaxation therapy / stress management course. Is there one near you? Might be helpful for after.
I also good a lot of solace from a book called "Conversations with God". It's a bit deep and some might call it new age spiritual so I guess it's not for every one, but there were some things in there that comfort me and still help me to cope.
Good luck. It will all be well.

Molennium
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

I did a plastercast of my mangled boob, don't know why it was very difficult dangling it into the plaster of paris and it came out looking squashed. I also took before and after shots. I think it is worth doing something out of character once in a while

good luck

Mole

Jennyg
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

Hi Girls
keep the messages coming PLEASE!!! I am stuffing my face with chocolate because come monday morning all that fat on my stomach is being removed anyway....
Not quite sure how I am feeling today. Im resigned to this happening now, but as I drove home from work this evening I just wanted to be any other normal Wedsnesday - lookign forward to the weekend and planning what my daughter and I would get up to etc etc ...My house is a total TIP as I have been just zombified in the evenings... my parents are going to be staying in my house to look after my daughter and Im very concious that its not clean and tidy at the moment... plus there are some certain items I need to hide... !!! its SO stressfull !!!
as for taking time off work - unfortunately being the manager in my office this is just something I cant do - Im almost ( in a wierd way) looking forward to having a few weeks off work so that I dont have to get up early each day ... I can just lie in bed !!! I think the best way to tackle this is close down mentally about it... i was so terrified at the time I had my lumpectomy that I dont actaully recall a whole conversation I had with my friend before I went in !! I just remember being more frightened about that op than I had been about anything else in my life - so you can imagine how this impending doom is making me feel. I think my vital organs may just close down through sheer terror!!!!!
anyway - mustnt keep banging on about this as Im doing well to not shed any fear tears this evening. I hope I will be back on here in the next few weeks to reassure anyone else that is facing this... This time next week the op will be done... deep breaths.... maybe I should take some pics of my boobs... or streak up my road .... or waggle them in the faces of passers by..... I feel i should do something wild before ..... I cant !!!

dotchas
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

Jenny,

Do you need to be working just now? I know you probably feel it takes your mind off things but you need sleep and rest as its best to be fit for your operation.
I tried working after diagnosis and before my op but when I went to GP for something to help me sleep he signed me off as he said I probably wasn't safe to be at work!
Might be worth thinking about.
Hugs
Dot
xx

anon1
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

hi jenny, i have been checking in every day to try and see how ur coping as i will be the same myself soon. i was due to set date for op next fri but got letter yesterday saying appt has been cancelled till 31st oct( not what i need). anyway outwith working hours i speak to nhbc u can find their number online and the lady there si fantastic. she works 24/7 and deals only in genetics.. please take care im thinking of u and will be on sun. then hopefully after its all over with and ur feeling better u could come on a nd reassure me.
p.s i had a period when i went in for ovaries to be removed and i too was so embarrassed but the nurses were amazing and explained to them its nothing. loads of women must go in with a period. and i also think after op u wont care whats happening with ur period and just making sure ur ok and thats all that matters. speak soon xx

ForumMember
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

Hi Jenny

You can speak to one of our helpliners on a Saturday between 9am-2pm.

Best wishes
Lucy

sammysaurus
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

Jennyg

Wish there was somebody who could help you. Hope that the messages on here have helped even a little bit.

I had a mastectomy on the 26th Aug with immediate reconstruction and the removal of 2 lymph nodes. I was told I would be in theatre 3-4 hours. I found out my results on thurs and they were not as good as we hoped they would be and I started chemo yesterday. At my results I was told 26 lymph nodes were removed and all this was done with a total time in theatre of 3 and a quarter hours so is there somebody you can talk about the time scale you were given to try and reassure you.

I am 33 myself with 2 young children and was mid-cycle fertility treatment when I found out. Plans were initially put on hold for 3-4 years but it appears that this is very likely to be more an option. Sorry, what I'm trying to say is that when i found out about my op, I looked at it in the sense as that it was going to be taken out and removed so hopefully gone & I told myself (in a funny sort of way) that when I left hospital I would be healthier than when I went it because a lot of the cancer would be taken away. I know inside that having no-more children is a high possibility but I intend to be around for a long time for the ones I have.

I think there is an e-mail facilty to talk to a counseller/nurse on here which might be easier for you.

Wish you well

Jennyg
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

Hi everyone thank you SO much - I am SO comforted by hearing from you who have had this done - I am STILL terrified and am going to bed early to try and sleep away the fear... but find myself waking up and sobbing at 3am - being totally zonked out for work all the time! But its good to hear it wasnt 'as bad' as you thought it would be. I know the surgeons who are doing my mast and recon do this all the time etc etc ... but even so....
To cap it all I will be on my period too .... oh the humiliation of having to be helped with that nuisence as well as the pee bag... and the drains... and crying like a 5 year old ....
thank you for the offer of calling the breast care people, but I work 8.30 - 5.30 and I cant possibly phone during work hours as i put it all to the back of my head / stick my head in the sand duoring work hours.. is there anyone to take calls on a saturday??? although this is also tricky as I have my 8 year old .... and I dont want her to see me upset... Its so hard ... I need to talk to some one who can reassure me at 10pm when it gets to me worst of all....
I was told by the hospital at my pre assesment that the breast care nurse would call me this week to make sure Im ok etc - havent heard anything from them... have been joking with friends about stick on nipples and the fun we could have with them etc etc

dotchas
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

Jenny

(((((BIG HUGS FOR YOU))))))))

Wish I could give you a real one but remember we are ALL here for you.Its Ok to be scared but I found my operation was nowhere near as bad as I expected.
Some friends rallied round me and others (family!) were nowhere to be seen.
As for the op,once I had the needle in and the anaesthetist started with the magic potion,I remember nothing until I came to in recovery and I just felt sleepy not sore just pleasantly sleepy.
Concentrate on the practicalities for the next few days ,packing bags ,organising the family etc.And be kind to yourself!

And you will soon be back on here helping newbies who will feel the way you do now,

Hugs
Dot
xx

marygettingbet
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

Jennyg, you'll be fine. I felt the same too. When I look back on it now, only 6 weeks ago, it's nowhere near as bad as you think. I know if a few weeks time, you'll feel the same too and be able to offer support and good advise to others. I've had my mx but got recon to come yet so hopefully, you'll be able to let us know how it was at East Grin. Lots love and positive thoughts x x x

Pancake
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

JennyG, it’s OK to be scared

I understand it’s the operation you are scarred of, I don’t blame you, I too was scarred, I had a mastectomy about 2 months ago but not a reconstruction, but it turned out to be OK, not pleasant but honestly OK.

I am sorry your friends feel unable to support you at this moment, it’s difficult for others as sometimes they are not sure on what to say, cancer is such a horrible disease. People like to feel needed, why not ask your friends for physical rather than emotional support, could they help with shopping, cooking etc after you operation.

You do know that this group will give you oodles of love and support and be with you on every stage of your journey.

Deb

XX

Jo_BCC
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

Hi Jenny,

I'm sorry you're feeling so scared and worried at the moment, but I am sure it's only natural. Please do give the helpline a ring and have a chat with one of the nurses here who I am sure will be able to put you at ease and answer at least some of your questions. The lines are open again tomorrow morning at 9a.m. until 5 pm (Mon to Fri) and Sat 9am to 2pm. The calls are free, 0808 800 6000

I'm sure you'll also get lots of support from your fellow forum users.

Kind regards,
Jo, Facilitator

vertangie
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

seriously try not to think about it too much, think about life after all this, think about being back at home, think about anything BUT sunday.

You might dream but you won't remember it. I was terrified of dying on the table so to speak but my Mum correctly pointed out that there is extremely rare nowadays and loads of women choose to do these kind of ops just for cosmetic reasons it's so safe now (didn't help me not be terrified but it's still true). I had wonderful boobs too, they were almost perfect actually but this is playing for keeps, for your life and nothing short of it. If it really bothers you you can have recon.

As for friends I'm afraid that this journey will show you which ones are real and which aren't. I've let a load of mine fall my the wayside and I'm not going back for them, on the other hand I've had some support that was unbelievable unexpected and kind, the best of humanity is in some surprising places.

Hold on, try your best to distract yourself this week and you'll get there.

Lots and lots of love.

Angie

Jennyg
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

thank you all so much for your messages ... Im finding it hard to deal with knowing that this time next week the operation will be over and i will be recovering... GOD HELP ME I AM SO FRIGHTENED.... when I think about making the the journey to the hospital on Sunday afternoon ( they want me in the night before) I just start shaking and crying. My eight year old has just seen me crying here and said '' I know you are scared about the operation Mummy, but you will be ok'' Sudden role reversal going on in this house at the moment!! And I know she is really scared too because she is really playing up - which isnt helping as my patience threshold is zero.
Being out cold for 7 hours .... such a frightening thought... will I dream? will I die? Im SO scared ( and usually very rational and in control!) I really dont want this op and yet I know I have to have it.... and my fabulous boobs? they will be gone - I am / was very proud of my chest... Im having a very 'feeling sorry for myself' moment....

dotchas
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

Louise79 ,Thinking of you today and hope everything goes well and hope you keep us updated when you get home!

To everyone else facing surgery,I wish you all the best and hope soon you will be back on here reassuring newbies facing the same surgery.

Hugs to all

Dot
xxx

CassieJL
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

HI Jenny,

I had a mast with LD Flap recon 6 weeks ago and can safely say that the fear of the op was a hundred times worse than the actual experience. There is nothing wrong with being scared, it's all part of the process you need to go through emotionally but my advice is make friends with your fear and then let it go. This is what I tried to do in the run up to my surgery...it sounds like you are partly upset because you haven;t confronted your fear completely, so perhaps you need to sit down and give yourself 10 minutes or so to brainstorm all the things that scare you about it and write them down...even the really awful stuff, if you;re scared of dying, write that down too, then when you are finished read it all back to yourself, then rip up the piece of paper and throw it away.

That doesn;t mean you can;t be scared again, it just means that you have a choice of when you choose to let that fear in. You govern the fear, not the other way round.

Just a thought but it may help.

x

Sam_BCC
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

Hi Jennyg

In addition to the support you are receiving from your fellow users on the forums please give the BCC helpline a call. Here you can talk to one of our trained members of staff who will offer you understanding and a 'listening ear' as well as support and advice. Sometimes just sharing your fears and concerns can really help.

Kind regards

Sam
BCC Facilitator

anon1
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

to santitos, i am not a very religious person but i do agree that we are only given what we can cope with, what a nice thought. it helps to think i will get there..

angie
-
i have read ur threads on other discussions and u seem so positive. this sight is amazing it helps to know im not alone..xx

santitos
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

Hi Jennyg

I had the masectomy last year, and I too was like you very devestated as there is no history of breast cancer in the family and I'm the youngest in the family. The first two weeks following my diagnosis I cry at night when my two girls were sleeping so that they wouldn't see their mom cry and during the day I kept calm and strong for them. One thing that I have learned in going through this journey is that most of the time the cancer doesn't kill it's our nerves and not being able to cope with the situation, so my advice to you is be strong , pray and leave it all up to the lord. The lord won't give us anything more than what we can handle once this is all over you will look back and be proud of yourself for having beat the disease for your daughter and yourself!!! And don't be afraid to ask your family for help and tell them how you feel and you are expected to cry but remember that you have the most beautiful gift one can have a daughter, so keep that in mind!

Live one day at a time, don't look back because yesterday with it's pain and heart aches is forever gone, tomorrow is the other day, it has problems and possibilites;but until the sun rises it is unborn and unreal. Today is the only day left and ANYONE can fight a battle for just one day and only when we add those other burders of those two days were are likely to fail...

Don't know what your beliefs are but this is what helped me get through those tough times:

With god behind us, and his arms beneath us, we can face whatever lies before us..

Lord, remind me that nothing is going to happen to me today that you and I can't handle together!

Best of luck to you tomorrow and god bless you and your daughter...

vertangie
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

Wow what memories you all bring back. I had bilateral mastectomies 8 months ago and was terrified but you just get on with it don't you and try your best not to let it show too much. The morning of the op I felt so sick, nil by mouth really wasn't a problem and it was only then that I found myself unable to hold back the tears. At 33 I'd never had a serious op in my life and was terrified of the anaesthetic as much as anything else.

If you do feel really shaky on the day they have preop meds that can help calm you, they don't interfere with the anaesthetic, quite the opposite actually they help.

I am now in awe of the recovery nurses and the surgeons who did my op. I was in a pretty rare situation as I had a tumour in each breast so removing all of the cancer from both sides had to be the priority, recon was not possible at the time but they did such a great job that I really am very happy with the results and actually every day that goes by I feel more comfortable with my body. I can have recon later if I want but I don't think I will actually.

I came round and was in no pain, I didn't need any morphine and was allowed home after 2 days. I wouldn't like to do it again naturally but mainly because I couldn't sleep with everything going bing all night (tip take some ear plugs and an eye mask if you're on ward with other people, they're bound to snore).

Then came the wait for the drains and bandages to come off (no baths!) and the results. the waiting for results was horrid but just try and stay calm and distracted (movies, books, TV.. anything that works) and then the day of the results... I was as scared as the op day but went in and there was my wonderful surgeon with the news that they got all the cancer from both sides , the lymphs were nice and clear and as far as they could say it was a perfect text book op that all could be proud of.. I sobbed harder then that when I was diagnosed, strangely it was the happiest day of my life.

So I'm really sorry you're here and at the start of a very scary journey but the start was the scariest bit for me so far and I think that's very common so do your best to keep busy and talk to the people here every time you feel wobbly and you'll find some amazing ladies and get through this I'm sure.

I remember the night before the op so well, I remember being in the car and even wondering if I could maybe jump out at the lights but somehow you find the strength to go and do what you must... good luck to all of you.

Angie

anon1
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

That is awful its such a big deal and u need as much details as poss. on the morning of my ovaries being removed i too had to call in at 7am to make sure there was a bed. i can accept there are emergencies BUT we prepare ourselves mentally for this.. i hope all goes ok and am glad i havent yet set my date as i will be so nervous as soon as i do that let alone the night before x

lolabelle
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

God I'm even in denial as to what i am having done - need to speak to the surgeons but it all sounds so HUGE!! flaps and tattooed nipples and things, i know i need top start reading up on options but its like i've been brave so far but this part has got me....

louise79
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

I'm having a latismus dorsi flap recon. I'm not actually fretting about the op. I think its amazing what they're going to do, i love biology and have researched the procedure in detail. Its the losing my nipple bit that is really bugging me. and the poss of something going wrong afterwards. and the actual fact that its ME they're doing it all to.

I am also fretting about the fact that although i've discussed the date etc with the surgeon and 2 BC nurses they haven't actually sent me any paper work so i'm not 100% sure i'll have a bed. The BRI have been shit with sending me anything in writing so far, so i'm trying to console myself with the fact that at least they're being consistent!

Jennyg if you have felt like i do now for weeks then i really really feel for you.

anon1
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

hi louise, i think we all try and make those jokes as our way of coping. i will be exactly the same as you when i set my date..did the hospital not suggest u going in tonight and having some pre op's? do u mind if i ask which recon u are having? x

louise79
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

I'm going in for my mastectomy and recon tomorrow, in 13 hours to be precise!
I have felt ok....until last night when i woke in a cold sweat and thought i was going to throw up. For a minute i thought it was a bug until i realised it was the fear kicking in. I know i've been lucky to have successfully buried my head and kept calm till now but i keep getting waves of panic crashing over me and i can't stick at anything for more than 10 seconds. I'm 29 and have realised in the last few hours that all the jokes i've made about stick on nipples really arn't very funny but as i've been so light hearted and made a joke of everything up until now everyone thinks i'm fine. I wish the docs could just knock me out now......i think its going to be a long night.

anon1
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

i totally understand when u say its as though ur speaking about someone else. i think i feel nunb at times. its ironic when i think about it to be told we have such a high risk of cancer. it's unfair. i know i dont have cancer and other people always remind me of that and i know im lucky in that respect. but on a bad day i think why cant i have the same risk as other people. it is a big big emotional issue but we will be fine and there for our kids. you look after yourself and when it's over with and your feeling up to it come back on and let us know u are ok.xx

Jennyg
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

am sorry to hear your news ... its really crap isnt it. I make jokes about it all at work etc because if I didnt do that I would collapse into an emotional heap at my desk!
I am sure we will be ok because so many women seem to have to go through this and do come out the other side - but you NEVER think it will EVER happen to you. It still feels as if Im talking about someone else when I tell people!
Hang in there xxx

anon1
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

Hi jennyg, i havent had mastectomy yet but its looming i have just had ovaries removed and setting date on 26th sept for mastectomy and like u i am so scared. i have an 11yr old daughter and 12yr old son and they are aware of some things but the truth seems to hard to tell them. i try and put a face on for everyone else as it seems kinder on them but i bottle it all up and when alone i then cry. its not easy and nothing anyone can say will take it away. i am lucky i have a husband but at 32yrs old it just seems unfair. i really wish u well and hope all goes ok best wishes xx

Jennyg
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

thank you!!! I cant talk to anyone at the hospital because i just start sobbing !!! And they look at me with their head on one side and I just feel like a fool... but honestly I am going to be a total wreck this time next week... I have blocked it all from bothering me over the last few months knowing its looming, to the point where i have blown loads of money going abroad twice in 2 months!! ( a mental escape i think!)
And now everytime I think about it - and think I must really get my house in order and pack a bag etc or a well meaning friend or family member asks if there is anything they can do to help , I just avoid it, dont talk about it and change the subject. My daughter is upset because I keep crying ... its just all horrible and scarey and I wish it would all just bloody well go away...

lolabelle
Member

Re: mastectomy & recon on 22nds Sept - totally Terrified aged 38

Oh honey I so feel for you as i haven't had mine booked in but its looming, in fact I am the one who has to arrange the appt and i have a mental block as i know how scared i feel about it. Not sure if its the wholoe out for that long either aspect or just the whole thought of it as what they are doing to you when you are out but i do feel for you and i don't know what to suggest as iall i can say is that the two ops i have had so far have been soooo much easier than what i expected to them to be so i try and hold onto that but i know deep down how scared i am. Try to speak to someone at the hospital - do you have a doctor/consultant/nurse that can arrange maybe a chat with the surgeon to go through some questions that might make you relax a bit but i know its something that right now probbaly feels unsolvable. I'm thinking of you and knowing i feel the same but without the date so really do understand that feeling you described x

Jennyg
Member

mastectomy & recon on 22nds Sept - totally Terrified aged 38

I can hardly breathe right now as I am SO frightened. I am having a mastectomy next Monday at East Grinsted. I am absolutely terrified and cant stop crying every night about this. I cant express how frightened I am. The only way I try to express the terror is comparing it to that terror you get at some nightmares you get - night terrors - its the most awfull terror... and I know Im rambling and sound like a mad woman ... must remain calm and try to breathe.... deep breaths....
I think the fact Im going to be out cold for 7 hours + bothers me... not knowing how I will feel afterwards worries me.... not having a boyfriend/husband to help support me makes me sad and I feel very lonely at the moment. Not sure how I am going to get through next week at work - being a manager of a busy office means I have to stay very focused and be BRAVE!! Not sure why Im telling you all this because I dont think anything anyone can say or do will stop me feeling like this... I feel like I am about 8 years old and I need someone to hug me and make it all better.... except I am the one who is having to hug my 8 year old daughter and assure her everything will be ok ...