Need some advice

Hi Ladies.

I was diagnosed 5 years ago, had chemo and radio. I had just turned 38 and had a 1 year old and a 4 year old. I was triple neg but nothing else was mentioned to me about genetic testing. I can't believe I didn't even think to ask...I guess a lot has been learned by all in the past 5 years.

Anyway, I was tested earlier this year when we found out some family history, and low and behold, I have the BRCA1 mutation.

All I can say is...thank goodness I survived the last 5 years!

Anyway, I am nearly 4 weeks post surgery. I had a skin sparing bilateral mastectomy with tissue expanders and the latisimus dorsi. So, no nipples here.

The radiation from 5 years ago has made movement in that arm more restricted.

I found chemo extremely hard going. I've forgotten all the different chemo poisons but Fecc was one of them and it makes me want to vomit even now, just thinking of it:-)

So, I was thinking the worst for this surgery but was really relieved when I woke up, after the 8 and a half hour operation. My hospital stay was great. So well looked after. It's so nice not to have to think of anything. The nurses keep on top of it all, of course.I had a bit of nausea but once again, I was given drugs to stop that. I think that was mainly from the pump...pethadine perhaps???... And only really when they tried getting me up for a walk or just to sit in the chair in the first  few days.

I dreaded coming home. My kids AND husband were sick and my husband had had a heart attack only a few weeks before! PLEASE stay in hospital as long as you feel necessary. I stayed an extra night and day as I couldn't imagine the hour's drive home. I'm so glad I stuck to my guns. You will  really improve rapidly in that first week. Each day it's amazing to see how far you've come. ( I'm sure it will be the same for you!)

When I did get home I fell to pieces and couldn't stop crying. My kids were whingeing and my hubby was a big grouch. I wanted to find a retreat and hide away!!! Well, my friends came to the rescue. Without asking they came over the next morning (school holidays!), made me stay in bed, cleaned my house and looked after my kids.

That first week at home turned out to be better than expected. I got advice from our pharmicist friend and he advised how and when to take my meds. I wrote down on a notebook, every time I took my meds...time taken, how many and what sort. Then I began to write it out in advance and tick it off once I got into a good routine. Although, half an hour before meds were due I could feel it was nearly time!!! 

Last week I fell in a heap. I'd been doing so well and wasn't prepared for the sudden dive. I think the medication from the anaesthetic had worn off and the slow release pain killers had run out:-( I saw my plastic surgeon's nurse to have the bandages changed and she sorted me out...Panadeine Extra and Nurofen to the rescue. It sounds like common sense but remember, you're taking a lot on just going through the surgery. I wasn't able to think outside the square! Oh...and COLOXYL for constipation, caused by the panadeine.

I was really depressed last week and everyone was telling me not to overdo things...well, it doesn't take much to overdo it in the first few weeks. I ended up asking friends not to come over to visit until I was feeling stronger and that helped. Mind you, my phone has become an extension of my arm so I haven't felt left out or unloved!!!

I'm not up to driving yet so I guess it's like with anything else...this is my story and yours will be different again. I don't feel I can turn my body easily enough and I'm still struggling with the backache. Don't let that scare you though. It's all doable, just as the other ladies have said. I'm not in agony, it's just that it's constant. My favourite time of the day is late afternoon/eveniong when I take the endone. This, for me, has been the most effective of the meds I've brought home.

So...I'll be back!

I hope this helps.

PLEASE remember that whatever anyone else tells you, it's only their point of view and from their own experience. It's very easy to compare. Try not to! Take one step at a time.

Much love to you all.

Thank you for starting this group...sorry, I can't remember who that was.

Pink Hope also has an amazing closed Facebook group, in each state I think. I'm on the WA one.

Sometimes you just need to chat with someone who can truly understand!

XXX

Welcome to the world of Grandma PJ's, it was all I could find. I also had trouble finding ones that weren't flannelette. These tend to make me hot. Eventually I found some in K-Mart prepackaged cheap as chips less than $20 for the top and bottoms together. They were a poly cotton I think and much lighter than the flannies, still in a lovely Grandma rose print though. The only thing I could suggest is zip up tracky jackets perhaps if you are expecting visitors. Good luck!

Hi I had skin sparing (not nipple) bilateral mastectomy with expanders on 30 May this year. The first day is the worst but you will probably sleep most of it. I felt mainly pressure like I had a truck parked on my chest. By day 2 I was up walking around slowly. I was very stiff but pain was managable with pain killers. I found it hardest when I tried to do without the medication so learnt quickly it was better to take it. I spent 10 days in hospital and I think the worst part is the drains and waiting for pathology results. I am now at 8 weeks and feel almost like before. I have suffered from all of the nerve endings being cut and damaged and I'm taking Lyrica for that which has improved it greatly. The fear of what is to come is the worst part, once surgery is over it is such a relief. So many of us on this site have had this surgery and it is definitely doable. You have had babies so I am sure you will be fine. Try to focus on getting ready for hospital rather than the surgery itself. Take all medication offered, rest and be kind and gentle on yourself. It seems you have already endured so much with chemo and radiation I hope you have an easier time with this surgery. Don't expect to drive for about 2 weeks. You won't be able to lift any more than 5 kilos and doing anything that requires upper body strength will be a struggle for about 6 weeks. This can include the simplest of tasks like pushing in an electrical plug or unscrewing a jar. Hope this was helpful all the best Lara xx