Tag Archives: mastectomy

9 Months On

I realised today that it is almost 9 months since I had my bilateral mastectomy operation. I originally thought I would post a ‘6 months on’ update but that was basically the week before my implant swap operation in December so it seemed a bit redundant. I saw Smithers last week though and was finally signed off as essentially ‘act as normal’. I am allowed to do whatever exercise I would like and have moved on to just general check ups with him every 6 months. I’m still seeing the physio for a related neck / shoulder problem but that’s improving too so now seems a good time to look back and talk about how I feel about it all now the actual stabbing and chopping bits off etc has stopped.

So how do I feel?

Physically – I’m ok. The surgery in December was a lot easier than the original operation obviously but it did cause me some issues. I was not able to raise my arms above shoulder height for 6 weeks and also had to wear a sports bra 24/7 for that time period. Once I was free to move my arms a bit more I realised I had some mobility issues. Basically my left side is knackered. It is not surprising – I’ve had 5 operations and the left side was involved in all of them. I couldn’t stretch my arm up properly and to compensate I was sort of hitching my shoulder up. This has caused problems with my neck. Pretty painful and also has been giving me horrible headaches. When it got to the point I was up crying in the night because it hurt to lay in bed I decided enough was enough and called in the physiotherapists again. I initially saw the one who specialises in breast cancer surgery patients and she did wondrous things to my armpit which has massively improved the mobility issues. She then said I needed to come back and see her AND the specialist neck physio. So a week later I was back being variously pummelled by both of them. The neck specialist is great though. She did some pressure point stuff with my head which was horrific while she was doing it but has definitely helped with my headaches.

Other than that it has just been a matter of getting used to the change in my body. It is almost impossible to describe how it feels having bits of yourself hacked off and replaced with fake stuff. The new implants are more comfortable than the expanders were – but they still don’t really feel part of me. It’s not like I am constantly aware of them or in massive pain – in fact large parts of me are numb now – but depending on what I am doing it can feel very very odd. If I am using the muscles that have been moved around that is when it feels very strange and I am really aware of it – say if I am carrying something. I am hoping this will improve now I am allowed to do some exercise. I need to be careful though. The physio said that if I want to start going swimming I need to do just a couple of lengths and then revert to the ‘kicking with float’ initially – work up to doing more with my arms slowly. It is really frustrating but I know that doing too much too soon is a BAD idea and will almost certainly cause more problems with my neck so I will follow orders. What I actually need to do is break out the physio band things they gave me last time and start doing the muscle strengthening exercises every day. It helped loads after the last op so I expect it will again.

In terms of how the foobs actually look… well in clothes I don’t think I look like too much of a freak. I would ask other people but I don’t know if anyone would actually tell me truthfully. I have noticed a difference in how things like vest tops look across the foob area. I think it is because they are sort of individual blobs stuck on my chest – they don’t squidge together like normal boobs do and so the material has to stretch across the gap and sort of wrinkles. Probably no one else even notices but it has been bugging me. I need to go shopping for underwear really. I don’t need a bra at all in terms of support but it helps with the wrinkling and if I want to wear anything light you can see the massive scars through the material. I had to wear sports bras after my recent operation and I also have some of the comfort bras you can get everywhere now and a few normal ones from Asda that I got when I had the expanders – various different sizes! – but I don’t have any ‘nice’ ones. Smithers says he hopes the current foobs will last for about 10 years though so I think I can safely go shopping now for some fancier options. Maybe I will do that this week. Not really sure what to get. I don’t need underwire but non-underwire ones tend to be ugly. Like the comfort bras – MASSIVE thick straps. Not pretty.

Out of clothes obviously I do look pretty freakish. I have scars essentially where your underwire would be – about 6-7 inches long, and then also vertically up the middle from the bottom to where nipples should be but aren’t. The vertical ones have healed pretty well considering they have been opened up twice (I was pleasantly surprised after my op in December – I thought it would look far messier) but the ones underneath are pretty hardcore. They have healed well – they are just big. The scars affect the shape of the foobs too obviously – and as I said before you can see them through certain lighter clothes. I’m ok with the scars though. I know a lot of ladies really struggle with even their partners seeing them but I don’t have any issues with that. My other half doesn’t seem repulsed and I don’t want to hide away from him. In a way I’m quite proud of my scars. They remind me of what I’ve done to protect myself and I am quite proud of myself for the decision I made to have the most extreme surgery I could even before I knew my genetics results. It was not an easy decision at all but I think it was the right one for me. I remember receiving a mastectomy information pack after one of my appointments with Smithers. It was when I went back towards the end of chemo to start talking about it again. I took the info pack into the toilet to open it in private and ended up on the floor just sobbing and rocking. It was a low point. Obviously I had known for months at that point what I would be having but there is something about seeing it in black and white in front of you that really makes it feel real. Didn’t help that I was a physical and emotional ruin from chemo either… but I digress. The point is that it was a horrific time but I didn’t take the ‘easier’ option of trying the breast conserving surgery one more time – and I am proud of myself for making the tough decisions when I was dealing with so much already.

Which I guess brings me quite neatly on to my mental state about the whole surgery side of this madness. I don’t really know what to say about that. I’m generally ok but I am definitely still dealing with the experience. I find myself thinking about it a lot at the moment. For instance the other night I could not sleep and I was essentially replaying the days directly after my mastectomy operation. It is still very vivid in my memory. I remember the horrible experience of going back to surgery for the hematoma and how I felt the day after that when I was so weak from losing all the blood. I remember having multiple blood tests a day and how badly my veins deal with intravenous antibiotics. I was driving along in the car the other day and randomly started thinking about why intravenous antibiotics hurt so much and remembered that the tubing they used for my PICC line was the same size they use for babies as that’s how delicate my veins are. That’s why it hurt. It is not like I want to dwell on these experiences but it is like my brain is still trying to process what happened. It was a huge experience to go through and even now it just seems really surreal but I do get these moments of sort of blinding clarity where I realise what has happened and frankly, it was fucking shit. One of the things I still struggle with is that by choice I have been private about my surgery. Very few people know the ins and outs. This is fine but there is a weird feeling I get when I’m around people who have no idea about my surgery. I don’t want to tell them – but I kind of do want them to appreciate what I’ve dealt with. It is difficult to explain, but it just feels wrong that they could have no idea about this massive experience I have gone through.

Another element is intimacy. I’m not going to say much about this as I think my other half deserves a bit of privacy – but it has obviously been something we’ve both had to deal with which has had its challenges. I also struggle with the fact that obviously I would never be able to breast feed. This is dwarfed by the fact I am probably infertile though so it’s not something I dwell on much.

It has also really affected my confidence too. I am very up and down. Partly I feel like I have handled this massive experience so why the hell would I worry about trivial things. Partly though I feel really socially inept and self conscious. Throughout the whole thing I have ended up making my world smaller – even more so after the surgery than chemo because I was off work and home alone. Now I am back at work basically full time and physically recovered I am trying to expand my world again but this has its challenges. I’m working on it…

So I think that is everything covered. I am obviously really happy that the operations are over for now. I could have elective surgery to have fake nipples created but I’ve decided not to bother with that at the moment. It would mean another general anaesthetic and more recovery and I’ve just had enough. Maybe later I’ll change my mind but I think I’ll give myself a bit more time acquainting myself with the current foobs before making any changes. I’m also not sure how I would explain that to my boss. I don’t want to talk to him about nipples. I think I would just have to say I needed revision surgery! I am however also pleased that I am going back to see Smithers for a check up in May though. He and my oncologist are like a security blanket. I will see them alternately every 6 months – along with the geneticist and gynaecologist in between. You’d think I would not want to see them but in a way it is reassuring that these people are on my side. There is no point pretending it is all over because it just doesn’t work like that – and seeing Smithers always makes me feel a bit better. He is a wonderful man and I can’t thank him enough for what he has done for me. No one would want bilateral mastectomy but if you are having to – I can highly recommend his skills… and personality. What a legend…

 

 


“It has to be done”

I swear if one more person says “It has to be done” to me today I will stab them in the eye with a biro… or maybe set fire to their nostril hair and force them to snort sambuca.

 

It’s surgery day tomorrow. Of all people –  I am more than aware that “It has to be done”. That’s why I’ve spent the last few months attending various surgeon, nurse and psychologist appointments to convince everyone to chop off my boobs and agree on how to reconstruct them afterwards. It’s not something I’d be doing if I didn’t have to.

 

So how am I feeling? Slightly psychotic at this point. I’m internalising it though so hopefully no one else has clocked it. I have spent a large part of my bank holidy weekend trying to find sodding button up PJ’s that aren’t lurid, silk or costing £40. Oh, and that are short sleeved as I’m still in the world of the hot flush. Call me a skinflint but I’m not shelling out that much for something I don’t want and what I want is surprisingly hard to find. It’s bad enough that I’m going to have to pay for part of the aneasthetists bill for putting me under but at least that is something you wouldn’t want to scrimp on! Friend to the rescue re the PJ’s though – suggested I get mens shirts which was a great shout. Got a couple in Primark – cheap and cheerful and much less stressful than actual PJ shopping.

 

Other than the PJ trauma  I have been up and down on the emotional front. Got the call last week to confirm I am indeed a BRCA2 mutant which obviously hasn’t helped with the positivity. I’ll write more about that another day but lets just say there was a lot of crying.  At least I know now that bilateral mastectomy (mx) is completely the ‘right’ choice. Doesn’t make it any better but I am vindicated and would like to go and point this out to my original surgeon who implied I was over reacting when I first asked if I should consider it due to my family history. I think the answer is a resounding YES.  What a nob that man was.

 

In terms of the actual surgery though I just can’t believe it is actually happening. I don’t know when my life became so ridiculous that this is really actually happening. This is what you read about other people having done and you think “poor them” and have another biscuit and forget about it. I mean diagnosis and original surgery and IVF and chemotherapy have all been surreal – but this is a whole new level of freakish shit that frankly I want no part of… but obviously I don’t get that option.

 

I don’t really know where this post is going – I don’t exactly have a point. I suppose I should say what I am having done. Tomorrow I am having bilateral mx with immediate reconstruction with expander implants. The reconstruction isn’t all that immediate imo though as the expanders will then be expanded over about 6 – 8 weeks and I will need at least one more surgery in about 6 months time to swap to permenant implants.  See – it’s utterly fucking ridiculous. May I wallow in self pity for a second and ask what on earth I did to deserve this? I’m not sure but it must have been pretty bad.

 

I guess I should try to name some positives. Erm… well hopefully this means I won’t get a recurrance or new primary cancer. It doesn’t eliminate the risk altogether – I think it brings it down to 5%. I should probably know these stats shouldn’t I. The point is that I won’t need to have annual scans or find more suspect lumpy bits and have to go through the stress of getting them checked out.

 

…and that’s all I’ve got in terms of positive thinking. Here’s hoping things look brighter on the other side. I’ll let you know.


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