Hello,
I wonder if anyone can give me any practical tips on how to cope with a mastectomy panned for 5th October. I have to have dye/node at the same time and get the results later so I will need another op if it has spread. I hate people fussing and seeing me ill. How can I help myself??
Hi 1234
So sorry you’ve got to have an mx. You don’t say this but if you’re anything like me then you’re probably grief stricken and in shock. I had an mx in july and am just about to start chemo.
I too am used to being in control, and hate being ill or having to rely on friends or anyone else. This, and the thought of being mutilated which is how I saw it, was quite hard to deal with. there were lots of tears although only my (new) husband saw them. On the whole I was ok but dreading the op.
In fact, once I had the mx it was fine. Really, it was much easier mentally than i thought it would be. I was Ill for a couple of weeks with an infected seroma which wasn’t nice, but mentally ive been fine. I have a temporary implant because I’m having chemo and radiotherapy then reconstruction in a year or so. I think i found the physical aspect easier to deal with than I thought, partly because I have a bump and am not completely flat. But that’s a matter of choice for everyone and lots of women decide not to go for any reconstruction at all. Nw having had the mx I understand that more. I care much less about people noticing im lopsided than I thought I would. I have a sortie to put in a bra but because I was so swollen for a long time I couldn’t put any sort of bra on.
The being dependent on other people and the fussing is something you have to have strategies for! I delegated some of the telling of friends to a couple of friends who could be trusted to tell others in a way that I would have done myself but I found telling people very tiring and stressful, you have to deal with their natural upset and worry… But then the offers of help flooded in and I’ve come to reslise that accepting their help is a way of showing them you care about them and that they’re important to you, and it makes people feel useful. If you don’t
Feel in control imagine how they feel!
I’m lucky in that I have a lovely and very supportive husband and family who’ve dealt with it all very well. I found that by trying to plan for things, looking up how to tie scarves for when my hair falls out, ordering an organic box of vegetable, just small things, made me feel as if I had some control over my life which the diagnosis had robbed me of. Looking on this forum was a mental health saver, so many helpful, kind and funny women posting about their experiences here, and I’ve found that tremendously helpful even if I mostly read rather than post.
Re the practicalities’ there’s a great list of things to take into hospital with you somewhere on this forum, it may be under undergoing surgery, ill try and find it for you. I was very sick from the anaesthetic, and stayed in five days because I was draining so much fluid. And my general advice would be to take in more things than you think you’ll need just in case you have t o stay longer. If you don’t need them then you’ll feel lucky!
I too had the dye thing and went a bit pale the next day, apparently some women look like smurfs the next day according to one of the nurses, which made me laugh a lot, even though I was being sick at the time. I was very sick after the anaesthetic, I think it’s the morphine. But some women are up and about a few hours afterwards so it’s very variable. Chrystallised ginger was the only thing I could eat for 24 hours.
Everyone has a different experience, even down to their treatment by the nursing staff. I have been in two different hospitals since the op and can say that I have nothing but praise for the nurses Ive come across - truly remarkable people who treat you with real kindness and allow you as much dignity as they can.
There are so many aspects of dealing with a big illness like this that this could be a really long post but if there are other specific things you’d like to know then please do ask, someone here will know something!
Very best of luck,
Aison
I can’t speak
Ha ha, sorry , the 'I can’t speak ’ was the beginning of another sentence which I couldnt see - I’m on my iPad and it’s not the best for writing long posts. please be assured - I can speak!
Alison
Thanks Alison,
Not too bothered by the change in my body…on the plus side my BMI will improve after the removal of a boob!! Sorry, the only way I deal with things is by joking. My family are really supportive but they are a long way away. My kids -17yrs and 14 yrs are naturally apprehensive about what I will be able to do/not do and as the only car driver in the family and living in a small village in the middle of nowhere they are aware it will impact somehow.I sEem to ahve struck a mental block re the followup , if its spread I think that wil be crisis time for me…
Hi 1234
I found the post which has lots of tips about what to take into hospital it’s
share.breastcancercare.org.uk/forum/viewtopic.php?f=27&t=31100
Re afterwards, you can’t really lift anything for a couple of days and then nothing heavy for a while after that. Een things like putting the kettle on takes a bit longer than normal! Mobility in the arm and shoulder is very limited, and you may get a bit of pain in the form of what feels like severe pins and needles in the area as the nerves knit together. Take all the paracetamol you can ! And I found gentle stroking of the area really helped.
I was very tired afterwards so did a lot of sleeping and lying in bed. Ad didn’t feel much like talking to people, it took too much energy. I wish I’d thought to make lots of easy to heat up meals and put them in the freezer before I went in to hospital . my husband does cook but not all that well and didn’t really understand that I wanted quite plain food. I wish I’d made some chicken soup, shepherds pie - that kind of thing. I was about to send out an email to friends to ask if they’d bring round a meal! Everybody wanted to help and would have done it, then I had to go bak into hospital with an infection.
I found I recovered quite quickly, until I got the infection! I was feeling very chipper about a week afterwards and two weeks afterwards was walking for fifteen mintues at a time. I didn’t feel I could drive safely though - I ws told not to until I thought I could do an emergency stop and didn’t think I could for two weeks at least. I was just feeling almost normal and then hit by and infection 3 weeks after op which put everything back.
But I had a tissue expander put in and that I think caused more problems than the mx, and I think if you just have an mx then it’s a much quicker recovery time. I say ‘just’ , it’s a fairly big deal!
I’m glad your bmi went down!
Hi 1234,
I had bilateral mx in march, and like imopatiens I found it ok psychologically, although I’ve had a couple of ups and downs.
Physically, the best advice I can give you is to really be careful in the first week or so. Most people seem to feel pretty good after the intitial anaesthetic stuff has passed, then there is a slump where you feel like you’ve been hit by a truck, especially if you’ve overdone it because you were feeling good.
In general I needed help with things like lifting (especially away from your body). The exercises are really important, but be slow and gentle with them. I think you have to BE KIND to yourself.
I was out walking after 4 days, just slowly and short distances at first. I got nerve pain after a couple of weeks, which was annoying and sometimes not very nice but it did go. I also had seromas, but I only had to have one side drained. I then got phlebitis (inflammation of the chest veins) which stopped me doing my stretches very well, but this eased gradually and I just kept on with it all and did what I could manage. I still have phlebitis now, but it’s not affecting me physically.
I didn’t feel helpless, just very curtailed in what I could do. I drove after 3 weeks because I too live in the middle of nowhere, but it was really a bit soon for me. Again I had trouble pushing my arms forward from the shoulder, so I had to lean forwards to change gear.
My advice is really to accept a bit of help when it’s offered, but keep moving as much as you can but carefully. For me the first 2 weeks were the worst, then I improved in big jumps and felt generally much better. Now I’m fine.
Lots of luck with the op,
BT xx
Sorry I forgot to say, front-buttoning tops are essential in the first couple of weeks especially - it’s quite hard to get your arm over your head at first!
Also, it can be hard to sit up from lying, so I had a pile of pillows and slept and rested almost sitting up. Some people recommend the V pillows for this.
Thank you for your help !
Went for my pre-op today, ecg, bloods and chest x-ray.2 weeks today 5/10/2011 my op is scheduled for. I shall be filling the freezer as suggested so my kids/hubby can heat something up.The practical tips are good, if you think of anything else let me know.
I just wanted to say thankyou for the practical tips too, I`m having prophylactic bilateral mx & recons in the next 6 weeks & my sis has hers on 5th Oct too - I will pass all of these on !!!
Best of luck for the op, I will be thinking of you both on that day now. XXXXX