Saturday, 21 November 2015

New rack

I am so grateful to the women who, over the last year, shared photos with me of the  surgeries they had to have because of breast cancer so I've decided to share my own here. I hope it's useful to someone....

The first time I met my surgeon, I told him I just wanted a bilateral mastectomy, no reconstruction, just get rid of literally everything and leave it. I didn't care. I had cancer and I just wanted everything gone. As far as I was concerned, even if I lived, it would never be ok. I'd never be normal again anyway, why try and pretend? I'd also been looking at photos from the Under The Red Dress Project. Look at this woman. She looks happy, and she is beautiful. I thought maybe if I live, one day I could just look and feel something like that.

My surgeon encouraged me to think about it some more, speak to other women who had had reconstruction, and read all the information they were sending me away with. When he left the room the Breast Care Nurses jumped in. They strongly encouraged me to go for reconstruction. They said I was really lucky to have him as my surgeon because he was the absolute best, and would do an incredible job. I said no, I just wanted rid of everything. They told me to think about it some more.

A week later my cancer treatment plan was changed, and I was to be having chemo first instead of surgery. This gave me several more months before I needed to make a decision about surgery and by the time December came I'd changed my mind. My understanding was I could go for mastectomies with immediate reconstruction, and if it looked awful I could then make the choice to get rid anyway. I figured I'd see how it would turn out, but in all honesty I never had high expectations of it being ok.

Since then I have had three surgeries.

On my left side, in January I had a skin sparing mastectomy with immediate reconstruction using latissimus dorsi muscle flap and a temporary expander implant. My nipple was removed (the cancer was right there) and the reconstruction included a circular skin graft (using skin taken from my back). The expander implant got expanded a couple of times and the corner of it protruded. It looked ridiculous. My surgeon assured me that the permanent implant that would replace it would not be like that.

On my right side, in July I had a skin sparing mastectomy with immediate reconstruction using temporary expander implant. My nipple was removed but the areola skin was left. I had one straight line scar from the middle to the side. This implant also got expanded a couple of times, but it was still lumpy and bumpy and to me, looked and felt deformed.

Here's some photos from these first two surgeries. I know they're awful but stick with it - things get better.

This was 2 days after the surgery in January. You can see two of the drains I had coming out of the side.

This was about 10 days after the surgery in January when I had the big dressings removed for the first time. The wounds at the side are from the 3 drains. The dressing under my arm is from the lymph node removal. My skin is crinkly and yellow because of the dressings and iodine.

This was a month or so after the surgery in January. You can see the skin graft scar which was pretty dark at the time, and the shape of the temporary expander implant through my skin. The inside corner poked right out. It just got worse when it was expanded again.

This was about a week after my second surgery in July. The expander implant on the right side was only very partially expanded at this point. It was horrible! You can also see again the corner of the implant on the left hand side poking through.

A couple of weeks after the surgery in July. Flat and horrible and I still have a drain and my skin is falling apart.
More drain wounds
The wounds heal, the scars fade, but frankly the expander implants looked shit! I wasn't looking forward to more surgery - but I couldn't wait to be rid of them. That surgery was Wednesday - 3 days ago.
Pre surgery mark up.
The expander implants were replaced with permanent implants. Surgery was I think 3 hours. No drains! I came home the next day, covered in microfoam dressings to hold everything in place. Even with all that microfoam I started getting my hopes up...
1 day post implant exchange surgery.
And the next day the microfoam was removed. I still have a couple of dressings but when they were replaced yesterday I saw underneath them just a few steri strips covering the stitches. They are where the existing scars were so no new scars.
3 days post implant exchange surgery.
The difference exchanging those implants has made is incredible. I wanted to share it for anyone who has those horrible expander implants at the moment. I just wanted to say don't feel down about them! The surgery to exchange is easy, and the permanent implants look and feel amazing. (Well, I thought so anyway!)
I'm not quite done yet. There's the matter of nipple reconstruction/tattooing. I wasn't originally going to bother with that either but I trust my surgeon and his judgement 100% now and I am happy to let him do anything he wants haha!
And when I feel shit about my scars I just try and remember this:
"Never be ashamed of a scar.
It simply means you were stronger than whatever tried to hurt you"

Monday, 16 November 2015

I've cracked open the Stellisept again....

I'm washing myself in Stellisept, sticking weird gel up my nose and digging out the big cotton knickers. This can only mean one thing!

I'm back in hospital on Wednesday for Surgery #3! Eek!

If you don't want the gruesome details stop reading right now!

A recap:

The first surgery I had in January was (deep breath) a skin sparing mastectomy with immediate reconstruction using LD muscle and expander implant, plus full node clearance. In plain English, the surgeon cut a circle of my skin out all around the nipple which was home to the cancer, then chopped and scraped out all the breast tissue from that side, leaving just the skin. (It all had to be removed, what with me being a genetic mutant of the crappiest kind - ie no known superpowers, just boobs that aim to kill me). He then sliced my back open, took some of my latissimus dorsi muscle and swung it round to the front of my body. He wasn't happy with shape or size or something though so he also stuck in a temporary expander implant. (More on them in a minute). Then he took skin from my back and did a skin graft where that circle of skin/nipple had been removed. He then took out all the lymph nodes under my arm because that's the place cancer cells temporarily squat in before going on their travels around your body. And then he stitched me back up. It took 8 hours, I was in hospital for 5 days, and I had 3 drains for a week. I thought it would be hell and it was actually, overall, a piece of piss and I strangely enjoyed the stay in hospital.

The next surgery was in July, and dealt with  the right side. Skin sparing mastectomy (but taking away the nipple because I now seriously distrust nipples what with their ability to let cancer cells set up camp and breed there) and immediate reconstruction using a temporary expander implant. Again - this surgery was to prevent me getting any more breast cancer in the future. It was a 3.5 hours operation, 2 nights in hospital. I thought it would be a piece of piss. It was HELL. I spent 3 weeks with drains in, and a few weeks off my face on tramadol to deal with the pain.

This surgery:

This is to exchange the temporary expander implants for permanent ones. The reason I was given a temporary expander implant on the cancer side is because I needed radiotherapy asap after surgery. Radiotherapy often damages your skin (in some cases it can break down entirely leaving you with open wounds like serious burns). Expander implants can be put in empty or nearly empty, then filled over time with saline, to stretch the skin gradually. (As it happens, despite the fact I can get sunburn within ten minutes even when covered in factor 50, my skin didn't react at all to radiotherapy. Big up to my hardcore skin for not putting me through the horror that some of my friends have been through. Shout out to Miranda here).

The non-cancer side had an expander too so that the surgeon could basically fiddle about with adding and removing saline from the expander implants on both sides until they match. Symmetry is the goal!

The thing about expander implants is they are horrible. They are rock hard, lumpy, bumpy, and there's a big metal port on them for where the needle goes in to pump them up (technical medical term). Once you're all healed, they get exchanged for permanent implants which from what I understand are all like soft and natural and stuff (here's hoping).

So that's what's happening Wednesday. Surgeon goes in via existing scars, takes out yakky, horrid temporary implants and replaces with lovely, nice new ones. The operation takes 2 hours (so in the case of my surgeon maybe 3 because he's a perfectionist - one of the many reasons I love him to bits), I should be home the same day and get this.... NO DRAINS!

I repeat: NO DRAINS!

I'm hoping to only be off work a couple of weeks. And then... all being well.... no more boob-related general anaesthetics. (I daren't think too much yet about the whole matter of "nipple reconstruction" and tattooing although for those of you that I've discussed this with previously, I have some good news. 1. They're only local anaesthetic jobs. And 2. I've been pissed off that the circle skin graft is too big and I asked Mr K if he could just chop it out and leave me with a line scar like on the other side. Turns out that the skin graft is for the nipple recon. Which is weird. The whole thing is weird, obviously. But this is definitely not as weird as the foof option. And so, fuck it, since he'll not be going anywhere near my vajayjay, I think I'm gonna go ahead with nipple recon. - For anyone that I have not already had this conversation with (which is probably all but about 5 of you).... Yes you read that right. Nipple recon is often done using skin from your foofoo - because you didn't lose enough dignity when going through all the original cancer treatment. Anyway... I'm not gonna think about it right now. Save that joy for the new year.)

So - I'm in hospital on Wednesday, then hopefully home that night. This might not technically be cancer any more but fuck it - if you've read this far you can see why I'm fully entitled to still be playing the cancer card. If you're local and you fancy stopping by and walking my dog for me during the next couple of weeks please do!

Lotsa love xx

Monday, 9 November 2015


My beautiful, kind, bright, fun, sparkly friend Kate died on 26th October. Today was her memorial service, and I was honoured to be asked to contribute to it. I found it difficult to write about Kate, because it felt like no words were enough - she was truly one of the most amazing people I've ever met.



Less than a week after I was diagnosed with breast cancer myself last July, I started chatting to Kate online through the Younger Breast Cancer Network. Like anyone newly diagnosed with cancer, I was terrified. She realised I lived in Leicester and suggested we meet up, so we went for a drink a few days later. I will never forget that day because meeting Kate changed my life. All I could think when I went home that night was, "I want to be just like Kate". And that has stayed with me ever since.

In the couple of hours I spent in the pub with Kate that evening my whole perspective changed. It went from one of fear, dread and assumptions that I'd be leaving my bed only for visits to the hospital, to one of hope, positivity and determination that like Kate, I'd be out and about and living my life to the full. She was truly inspirational. Kate had not quite finished her initial cancer treatment herself at this point- she was still having radiotherapy. But you wouldn't know it. I'm sure that everyone here will know what I mean when I say I thought she sparkled. That incredible sparkle is what made Kate stand out in a crowd.

While I am the one stood here speaking, I am really doing this on behalf of the whole Younger Breast Cancer Network. YBCN has well over a thousand members, but there are a few who really stand out. Kate is one of those, and I know she has made so much difference to countless women, through her thoughtful posts, kind, supportive and positive comments, and funny, up front and honest blog. Myself and Laura along with many others all know how lucky we are to have really gotten to know Kate and be able to call her our friend.

Many of my happiest times over the last year have included Kate. As I think back I realise that most of them have involved drinking wine or cocktails and talking extensively about important matters such as men! Newly single for the first time in 12 years, I loved listening to Kate's stories of online dating! One in particular of course... I am so glad that Kate and Adam met - the first time I got to hear all about him was when Kate visited me in hospital at the beginning of January after I'd had surgery. It was early days but I could tell from Kate's complete inability to stop smiling that Mr Gibraltar was someone special. I mentioned to Adam that one of my favourite Kate moments is when she told me and Laura all about the art print he had bought her. Adam summed it up better than I could when he said "She was so kind but she also had that little bit of devil in her that I loved - I remember when she told me she hated the picture - I loved that honesty!" (Kate did absolutely wholeheartedly hate that picture!)

Alongside Kate's honesty and sparkle, one of the things that really stood out was her kindness and compassion. Kate was incredibly active on the YBCN forum, constantly reassuring others that treatment was do-able and that they'd get through it. As a friend she always remembered when you had something going on - a scan, a chemo appointment, a meeting with the oncologist. She'd always get in touch with words of encouragement and support.

She also gave great perspective. Kate told us about how when she was initially undergoing treatment for her primary breast cancer, she was in touch with another woman who had had a secondary diagnosis. This woman had told Kate that she regretted spending the time between primary and secondary diagnosis worrying so much and letting fear about cancer take over her life - even when she was well and not having any treatment. Kate took this on board, and made sure the rest of us did too. When she got her own secondary diagnosis, she told us how glad she was that she had made sure to live life to the full every single day, something that she absolutely continued to do. 

I will think of Kate every day, and it will remind me to be bold, to be bright, to love with an open heart, and most importantly to have fun and enjoy life. None of us know how many days we have left. But I cannot think of any better way for each of us to honour Kate than by going away and making sure each one of them counts.