Hi Cleanas
This last round of chemo has wiped me out too. Been 2 weeks and still suffering side effects, some different to before and I've had to start taking anti sickness tablets yet again as feeling sick although I'm managing to eat now the mouth ulcers have gone, but of course the upset stomach has started instead! :(
I had an hour and a quarter wait at the hospital on Wednesday to see the consultant plastic surgeon (for a 9.15am appointment!?). Given I wasn't feeling great and had an hour's drive to get there I was almost asleep by the time I got seen. I've not got a date for the op yet, but I am on the waiting list...
The reconstruction awareness meeting was very helpful - I spoke to a lady who was only 3 months post op and she was already back at work (having gone back part time and now full time). She hadn't had chemo or radiotheraphy though so my time scale may need to be adjusted somewhat. Although her scars looked very red there was another lady there who was 7 years post op and her scars were very faded. Undressed you could see the results weren't perfect, but then show me someone who does have perfect natural boobs! So I was actually happy that I would have a normal shape afterwards and certainly under clothes no-one would be any the wiser, and undressed I'd be happy with the results I saw too.
I didn't know about the nipple reconstruction option, and saw one lady who hadn't had it yet, and all the rest who had. Also who knew I'd have to have my belly button cut out and moved as it will be in the wrong place after the tummy tuck!? They also confirmed that no driving for 6 weeks is about right, as you can't lift your arm high enough to steer. Also simple tasks like lifting the kettle are out for at least 2 weeks. They stressed how important it is to do the exercises as if your scar tightens up your movement will be much more restricted and it will be harder and take a lot longer to fix of that happens.
There was also a lady there who had had two mastectomy's, both with reconstruction - but several years apart. She had got a lump on the other side some years later, and they did the reconstruction from her back for the second and her tummy for the first. So that showed me that it would be possible to have a second reconstruction at a different date, should it ever be needed.
More helpful to my decision re the double was the second opinion my breast consultant suggested I needed. The doctor I saw for that was much more matter of fact and straight talking about it all. He gave me facts and figures and explained how having a double mastectomy wouldn't actually extend my life or stop me getting cancer again. He also explained that it was an even bigger op that having the mastectomy and reconstruction to one side and that it would therefore take even longer to recover and needed serious thought rather than a snap decision. Especially having that after chemo, which affects your body's healing rate, it was something to take into account too.
He also said that if after going away and wighing everything up that I still wanted the double, because the stress and worry was too much, they would consider it still. So it's not ruled out. But the procedure I'd need to go through to request it (and get the panel to agree to pay) would mean a severe delay if I wanted both at the same time.
So he explained that, although still a small chance, the higher percentage is for the original cancer to return somewhere else rather than for a new one to delevelp in the other breast; either in a bone or an organ etc. I asked how they could tell it was the same rather than a new cancer and they said they can tell from the biology of it - ie if it matched the biopsys already taken. He also said the more years that go by without it returning the less chance it has of coming back.
It was after that meeting that I realised how significant this whole operation is and was faced with my mortality in terms of percentage chances of surviving a year, two years, ten years and the cancer returning or a new one coming in the other breast.
He also said he wished more women considering as double would ask the sort of questions I did. Because often they make a decision based on emotional feeling and not the facts or without understanding the outcomes. So if you are considering it too then do ask lots of questions but be prepared for some uncomfortable answers.
I am having the single for now, but haven't ruled out having the other side done later. I feel happier that there's no need to rush the decision though and I am going to have the gene test done privately to help me make that decision. I will need to save up some 600 for that which will take me a while!
So please do speak to your breast care nurse - I'm really surprised they've not been in touch with you already. Do they have the correct phone number for you? Tell them of your thoughts and what you're considering.
I too feel like everyone who was there and supportive to start with have pretty much vanished now. I know it's been a while, but it worries me how much support I'll actually get post op. My parents were looking to go on holiday after ds's exams (they are going to help get him to and from them). Until I pointed out I'd not be able to drive for 6 weeks and that simple tasks like lifting a saucepan or pushing the hoover about meant I'd not be able to cook, clean or even put home delivered shopping away. So they've not booked anything as yet...
I've had no texts or calls from friends, work colleagues or 3 of my 4 siblings this last two weeks. It's quite depressing but I kind of expected it after the initial 'rush' of help and support. In fact I told my breast care nurse at the start that it was upsetting that after 16 years as a struggling single parent, it had taken cancer for my family to rally round and support me and ds. I also said that while it was appreciated, I did wonder how long it would actually last for and whether they'd be there still afterwards... Guess I already have my answer!
On a separate matter, I finally got my will sorted out. I am going to sign it at the solicitors on Tuesday. People saying it won't come to that, doesn't help. Of course I'm hoping it won't, but not having anything in place for ds has been on my mind and worrying me, so it's good to finally get it sorted so it is one less thing to think about.
Sorry have waffled on for ages! Hope you are coping with the side effects. Even if they are bad remember this will be the last time! Will let you know when I get my operation date through. They said the same 30 day guideline comes in 3 weeks after chemo finishes so should be around 4-6 weeks after mine/your last chemo. Stay strong. The final straight is coming up and hopefully the finishing line will soon be in sight for us both.