Double mastectomy soon

Ok flo, youre normally the words of wisdom here, and it seems like you have though this through. Youre right to go ahead with it though, I would be the same.

Im sorry to hear that it has come to this stage with you, but you know you will just do it and come out the other end.

Im sure there has to be some sort of help for you. Have you spoken to the social worker, one should be for the breast cancer clinic, another with the oncology department.
They will be able to advise you on your rights to maybe having some home help or practical advice for you.

If I think of anything Ill get back to you.

Hi Flo
I am so sorry that you have to go through with this. It was tough to have to decide to have the dbl mastectomy, the waiting must have been hard but I'm sure you feel now you just want to get it over with! It sounds like you have it planned very well, I have no words of wisdom but would say that as you know hospitals, recovery times, ops, kids, all have their own timing and you may hve to be more flexible over things than you would want.

Are there any mature teens/students etc you could call on to help wt ur son? What about local resource/community centres - any volunteers based there who could be of help? same wt churches, even if ur not religious, some will have community care visitors. I know time is a pressure here & u dont want strangers coming in but maybe this might spark off something helpful for you.

Also unfortunately be prepared for a clingy tearful Kevin when you do get out of hosp who will need lots of reassurance and who may not be too keen on school for a while. There will be days when you have energy to motivate him and days when you don't, and I know none of mine suffered from the odd day off school when life occasionally became too overwhelming & they wanted a duvet day!

You have been so positive and helpful to others that I hope in the real world that you will find the help and encouragement that you need.

Hi Flo

Am only reading this now (and yes it is the middle of the night and I cannot sleep...reason set out below).

Cannot think what else you might do to get organised but I do think you should put a call into your local public health nurse ASAP who should be able to organise some home help for you and kevin for 3-4 weeks post op. I had hope help after my mastectomy and during treatment and it was a LIFE SAVER. The home help did housework - she came twice a week for 2 hours. I know this woman also did shopping for some of her other clients and prepared lunches / dinners as well as housework. You may not need it but you can get home helps to be care helps ie helping you shower etc - but you might prefer to manage that yourself.

As for my nocturnal activities - am due into Beaumont on Tuesday 24th for my reconstruction all being well with bed availability. Operation scheduled for Wednesday am. I cannot wait for it - to feel slightly more normal again and not lob sided. Am getting the Lat Dorsi done!

Best of luck with your op!

Hello Flo. I remember you as well from my early months. I had a single mastectomy three weeks ago and so far all is well. I think the advice given in the other letters is good - a home help seems to be the best way to go. And I do feel for you with a young son. (Mine are all adults.)

Good luck tomorrow with your operation. I will think of you and send positive thoughts and light a candle.

Elizabeth

Thank you everyone!

I did contact my local health nurse and she thinks that she has someone who will call every evening for 2 hours to help cook dinner and clean up and then help do Kevin's creams and PJs for bedtime. Hopefully for 2-3 wks after I get out of hospital. So thanks for the suggestions, I would never have thought of that!

Getting nervous now, my back and neck are starting to get really sore because I am getting anxious and always carry tension there. Before my first op in 2006, I could hardly walk but was fine once I woke up after the anaesthetic!! Roll on Tues wk.

I'm hoping to have a lend of a laptop to keep me occupied while in the hospital. I'm not going to have many visitors because most of family and friends will be occupied minding my little man, are away that wk, or can't make it all the way to Dublin.

Anyway, if anyone is in the Dublin or the Mater and has a few minutes to spare, I'd be happy to see you 'in the flesh'! I'll be in the Mater Private so I think its open visiting hours. Monday evening BEFORE the surgery on Tues, WED if you don't mind seeing me zonked on pain killers, Thurs, Fri, Sat - I am hoping to come home on Sunday. Fingers crossed for quick healing and low drain output!!

Hugs,
Flo.

Hi Flo, is it this tuesday that you are going in?
Hopefully that help will be sorted out for you, it will really make a difference!
I can imagine youre nerves must be up to ninety alright, although its a means to an end. Hopefully all will go well and you will be flying afterwards.

I havent been on here much, my laptop lead is broken and im using an itouch, its not great for surfing.
I started Taxol last week and to be honest im in agony with the bone pain, the painkillers arent doing much. But I think it must be doing its job properly...lol.

Keep in touch and let us know how youre keeping.

Hi Flo

Good luck with the op on Tuesday.

Unfortunately I wont be able to visit - recovering from my recon op on 25th Aug which includes no driving!!

Wishing you low drain output - make sure you take plenty of pain meds as the drains are a curse. Got the last of mine out last Friday 9 days after my op. It was SO SO SO uncomfortable - unfortunately I dont think I was taking enough pain meds.

Great to hear you can get some home help. Suggest you make a list of things for the home help to do eg laundry, ironing, vaccuming, dusting, cleaning bathroom, changing bed linen as well as the cooking dinner and looking after master Kevin. Home help could hopefully do one major task each night eg ironing as well as the cooking. Actually after my recon op (only one side tho) I was able to manage the cooking - it is the rest of the household chores that I have a problem with as you cannot lift or push or pull for up to four weeks post op.

Will be thinking of you Flo

LindyLu

hi flo,

just wishing you all the best for your operation on tuesday pet, u
take care and stay positive.

will light a candle for you, sending you love and light,

take care and stay safe,

mega hugs,

huggybear xx

Hi Flo and all my friends
Sorry I have not been on site the mood is not great. Flo I could give you a hand with Kevin for a while as I am only over the road. I will text you.
Evelyn x

Oh everyone,

Thank you all so much for all your messages of good luck, etc.

Evelyn, you are NOT 'just over the road' you're MILES away girl. But if you want to come over early for one of your Tues appt, you can make us a cup of tea and we can chat! Sorry to hear your mood is not great, hope to talk to you soon.

Huggybear,
Thanks for your good wishes. And the candle, I'm not religious but there's something about the lighting of a candle for a loved one that is still special to me.

LindyLu,
Great to see you posting. Hope you are not too sore after your op last week. How did it go? Details please!

Hugs,
Its not this Tuesday, I'll go in the evening of Mon 12th for the op on Tues 13th. Tell the nurses you are having a hard time with the bone pain, they can change/increase your pain meds and also look at giving you a low dose of Diazepam to help relax you which decreases the pain. My sis is finding it worst on days 4-6 when she comes off the steroids so she takes Tramadol and Diazepam those days. Just remember not to drive when on those two!

And if anyone can't guess, I am getting totally WIRED as the date comes closer. I am typing and talking at TOP speed! And not sleeping great. Its due to anxiety about the op and having a load of stuff on my mind that I have to do beforehand. Unfortunately, it isn't helping me to whizz about to clean and sort out my house, etc before I have to go in to the hospital.

I think its time for a relaxation tape or yoga session....
Flo.

Hi Flo,
I'm so pleased u have somebody to help with Kevin & housework, that must be a load off your mind. I hope all goes well for you on tues and after. I realised some years ago that the worst part of any difficult event is not the event itself but the 'anticipation' i.e. the anxiety coming up to it. The anxiety and negative thoughts fed on each other and made me feel even worse. But as the old cliche goes, things are usually not as bad as we expect. That's not to downplay your surgery, I think you are very brave and very organised but I hope you are able to find that you can even relax for these last few days
Lots of love
Janeymac

Hi flo, thinking about you at the moment. I hope the op went well, and youre not in too much pain. Come back and let us know how youre getting on xx

Hello everyone,

I'M BACK!!!!!

Hope everyone is doing ok. I had the op on Tuesday at 7.30am and everything went well. I got out of the bed as soon as I could and started walking and when my surgeon accidentally mentioned on Wed that there was a possibility of getting out on Fri, I latched onto that idea and stuck with it doggedly. Despite a very scary episode on Wed evening (when it appears I had a reaction to morphine and had to have a 'reversing agent' injected to wake me up!) I got out as hoped on Fri morning. I felt really weird and groggy in the hospital the entire time and have never felt the need to check out so quickly before. But I am fine now I am home and have my wonderful cousin still here to help me out.

My home help also came to visit for the first time today and will come 7 days a week (wow!) for 2 hours to do anything necessary. I have very little pain at all at the moment other than muscle spams in my ribs and chest. I have to really watch that I don't do any moving or lifting that could cause shifting of expander of slow up healing in any way.

I am really, REALLY glad to be home with my little honey. Thanks to everyone for your good wishes and support.

Now I will try to catch up what is happening with all of you.
Hugs,

Flo.

Well done you!! Delighted you're home with help, hope everthing contnues to go well. Just don't rush it, you have a lot of healing to do

Hi Flo

Delighted to hear you got out of hospital earlier than expected.

Hope those drains are behaving themselves and are hopefully gone or nearly gone!

Do take it easy. Four weeks post recon op I am still feeling quite tired. That said my little people (3.5yr old and 2 yr old) have had colds and coughs so have been waking during the night which is definately not helping mammy recouperate! Needless to say there are no lie ons either!!

Take care and make sure you keep your home help busy.

LindyLu

Hi,

Well I spoke too soon. Been having a good bit of rib pain (why?) the last few days and had some terrible diarrhea from the antibiotics. On the plus side, I've lost some weight which was really needed!

Was back for my check up last Thurs hoping to have my drains out but my surgeon said not yet. Just as well, either I had a seroma that popped or the travelling in to Dublin and back stirred things up because the output of one of my drains went WAY up on Friday. Thankfully its now come back down and I am looking good for drain pulling tomorrow. Not looking forward to it but will be glad to see the back of them!

I've discovered that its very difficult to sit and watch someone do work in my house. I guess I'm just not cut out to be a lady of the manor!

Hugs,
Flo.

Right side drain out on Tues 28th. Fluid has built up inside since and moving like a waterbed - if I look at it too long I could start to feel seasick!

Left side STILL in - grrrrrr. Not coming out till Mon/Tues at the earliest.

Getting there....
Flo.

Hi Flo
Well I hope by now you have got the left drain out, you will feel less like an invalid with the drains removed. Don't worry about the build up of fluid, even if you have to have it drained every few days, it will eventually be sorted. But it is kind of weird when its sloshing around isn't it
Hope you continue to make a good recovery. Make the most of your help, its great you can get it, especially in these times
All the best,
Janeymac

Hi,

I finally got the left drain out last Thurs (7th Oct) and had the seroma on the right side aspirated. Its looking like I will need both sides aspirated some time next wk as a bit of fluid is building up again.

Other than that, pain is still there but to a much lesser degree. I have a lots of aches in my neck and back - I think its because I am holding myself stiffly to prevent getting bumped or injured and also from sleeping on my back which I am not used to. I'm making BIG efforts to stretch frequently and try to relax my shoulder and back and it seems to be helping, TG.

LindyLu,
I too am finding I get tired very quickly still; I will be 4 wks out on Tuesday. I guess my original hopes of being fit and able within 4-6 wks was a teensy bit over ambitious! Thankfully, I still have my home help calling for another wk at least. And there is nothing in my calendar that is putting pressure on me to get back to full strength.

Hugs to everyone,
Flo (getting there!)

How are things going for you Flo? Hopefully you are finding that life is back to normal and that you are looking forward to a great Christmas with your wee boy.
x

Hi,

I am doing ok. Finally!!! Had about 9 full wks of seromas, infection and heaps of antibiotics. Thankfully the antibiotics did work so I never ended up back in the hospital.

However, the pectoral muscle has torn and the right expander has dropped down (a lot!) and under my arm. I think it will require some revision surgery to try to sort it out. But my surgeon just wants to leave things alone for a while to let the infection and seromas settle down and I am happy with that. I'll be delighted to have Christmas and New Year without antibiotics. I was really sick of taking them, was on very large doses of them.

So its just the cosmetic side that is not good which is disappointing but not the main reason I chose the surgery. At least I no longer have pain now. And my risk of another cancer is VERY low.

Regards,

Flo.

PS - Thanks for asking!!!

Hi Flo
Glad you out of pain and off antibiotics. This bloody cancer journey not easy . . no matter how well we think we are prepared for it. It seems to throw a lot of s*it at us.
Weather not helping any of us either . . but must admit I am looking forward to Christmas this year. This time last year I was having chemo and bald . . so anything is better than that.
Love and Happy Christmas to all on site
Evelyn

I think a few lines doesn't sum up the 9 weeks of disappointment & difficulty you have had. Sorry to hear more surgery may be needed but I hope you can enjoy these few weeks of relative peace & quiet. Delighted that risk of another cancer is low. Enjoy your Christmas