The minefield that is reconstruction….

As a naive and very scared 26 year old in the world of breast reconstruction I was clueless. I was incredibly lucky to end up with a fantastic surgeon who did a great job. However having done this blog I now know this isn’t the case for hundreds of women.

meeeeeee

For those who haven’t gone through with the surgery yet my main advice is take your time doing plenty of research and finding a surgeon who you have faith in and they make you feel comfortable. I have spoken to ladies who have left appointments in tears because the surgeon just didn’t give them that confidence. Its a good idea to know yourself what you think would suit you best before you see somebody. Everybody deserves to be happy with their surgeon and have a great big smile on their face like I did when the ordeal is over.

murhy

One interesting fact that is that as a patient your are eligible to go to any surgeon in the UK to find the treatment that suits you. You aren’t pinned down to your area just because you live there. You can be referred anywhere.

When I went to see my breast care nurse she had a gallery of photos on an iPad which were separated into specific techniques. This was really useful but I still think a bit of research done at home and speaking to others is really important. There are various forums on the internet where you can speak to other women going through the same thing.

One forum which is very useful is : BRCA umbrella This resource is specific to those carrying a BRCA mutation such as myself. It is very confidential and you must be able to prove your joining for genuine reasons. This makes women comfortable such as myself in opening up and posting photos of your journey knowing they will remain confidential. There is also a gallery of reconstruction for you to browse through.

Another great website is : ABC After Breast Cancer Diagnosis. This website is brilliant and is trying to focus on bringing together all the relevant info for women going through this process. Including which surgeon offers which reconstruction etc, it is all done from the writers personal experience which I think is so important and valuable to other women.

  
There are two main types of reconstruction:

Some patients if they are having radiation or chemo may not be able to have reconstruction at the time due to the integrity of their skin.

  • Implants
  • Flap reconstruction- tissue used from another part of your body.

Nipples?

With most surgeries you are able to decide if you want to keep your nipples. Keeping the nipple adds on about a 1% risk of getting breast cancer. My surgeon had not seen a case of BC appear in this site after such surgery (which doesn’t mean it doesn’t happen) but this assured me slightly so I decided to keep mine.

A Nipple sparing mastectomy is what I went for. There breast tissue is scraped away very closely behind it and the nipple itself remains.

Nipple reconstruction is also an option. Nipple reconstruction is done after the reconstructed breast has had time to heal — at least 3 or 4 months after reconstruction surgery.The surgeon makes small incisions and then elevates the tissue into position, forming and shaping it into a living tissue projection that mimics the natural nipple.The new nipple can then be tattooed to add color and create the areola around the nipple.

nipple-cv-flap

A nipple tattoo. Instead of using tissue to rebuild a nipple, some women choose to have a nipple tattooed on the reconstructed breast. Some women decide to have a star, a heart, or another meaningful image tattooed on the reconstructed breast instead of a nipple. I have seen some of these and they look amazing!!!

nipples

A breast cancer survivor has recently been in the papers with her floral nipples.

Daily mail. Flower nipple tattoos

More info on nipple reconstruction/sparring/tattoos can be found here Nipple options

When you are in the room with the consultant you kind of go blank, and you know they are the expert and just go along with what they say. Don’t get me wrong the main aim of this op is to reduce your risk of breast cancer/remove your cancer, however the reconstruction part is still a HUGE part for a women.

I am not an expert but from my research the main techniques I’m aware of are……

DTI (direct to implant) This is what I had and it requires only one operation as your breast tissue is replaced with a silicone implant. This was then secured with strattice which is a piece of pig skin which acts like a sling to support the implant. As far as I am aware you can’t go bigger with this, but I wasn’t bothered at all about this. This surgery has the quickest recovery time, but as always has its risks.

Read more: Implant reconstruction

Photos can be found here :Implant reconstruction

LD Flap- In a latissimus dorsi flap procedure, an oval flap of skin, fat, muscle, and blood vessels from your upper back is used to reconstruct the breast. This flap is moved under your skin around to your chest to rebuild your breast. The blood vessels (artery and vein) of the flap are left attached to their original blood supply in your backIn most cases, a breast implant has to be placed under the flap to achieve the desired shape, size, and projection. A latissimus dorsi flap procedure leaves a scar on your back, but most surgeons try to place the incision so the scar is covered by your bra strap. This type of surgery can leave you with some weakness in certain movements so isn’t suited to everybody.

Read more : LD flap breast cancer.org

Photos can be found here :Ld flap reconstruction

TRAM- This stands for transverse rectus abdominis, the muscle in your lower abdomen between your waist and your pubic bone. A flap of this skin, fat, and all or part of the underlying rectus abdominus (“6-pack”) muscle are used to reconstruct the breast in a TRAM flap procedure. This is a very common technique however I feel the down sides are two sets of “open wounds” and it leaves a big scar. I could not have this type of reconstruction as I already have a scar going across my abdomen and have had 7 surgeries here due to bowel perforations, so it is a no go area.

Read more : TRAM

Photos can be found here:Tram reconstruction photos

There are also other reconstructive techniques which I am not too sure about but there is lots of info here Breast Reconstruction

I hope this helps anyone going through this decision at the moment or considering it soon

xx

10 weeks on….

I’m feeling great. My boobs look and feel good. They aren’t perfect and never will be but that wasn’t the aim  …. They are always really cold too which is weird. I used to enjoy feeling my warm boobs when It was cold outside , now it’s like feeling two snow balls, of a less saggy nature. I wouldn’t change them for the world though, even if I am part pig now! 

I’m still raising awareness which is working really well. 
I’ve put on 10 pounds since my op and blame all my friends for bringing round so much chocolate, which I obviously had to eat out of politeness. 

I feel vile and need to join a gym to get rid of the weight but  don’t know if I can do things in the gym yet. That’s a blatent lie, I just can’t be arsed. 

  

Here’s a few bits and bobs I’ve been up to…. 

   
This bin the bra campaign is great. People give in their old bras which are sent to third world countries and money is raised towards breast cancer research

 

    
This is see saw in hale displaying my drain dollies which are proving super useful for lots of ladies undergoing mastectomys 

 
Becky want from BBC radio manchester . I did a live interview which was quite scary but I managed to keep it together 

   
http://www.itv.com/news/granada/update/2015-10-08/the-breast-cancer-research-that-could-lead-to-a-major-breakthrough/

This itv piece is brilliant and the research spoken about is so promising for future generations. I’m so proud my mum was the front picture with me as a baby. 

  

    
I continue to get feedback like this on my blog which literally has me in tears. To think I’m helping and giving other women the confidence to act is so heart warming. 

I email so many women a day answering there questions and worries. My emails are littered with boob images- an outsider would think I was a right perv. I’m not a doctor but people have so many questions before going into the unknown,  it’s really helpful to speak to somebody who’s been through it. I had my sister to speak to which was useful even though we had very different operations we still both had double mastectomys, and it appears both like to sport the off the shoulder look too

  

I got a message from a girl a few days ago. It broke my heart how petrified she was but just speaking to somebody who has been through it put her at ease…

“I been so depressed because I’m trying to accept the fact how my body looks like with the scars and everything else

And with scars do they go away and was it hard to find bras as well,im so sorry for messaging you all these questions but this is my first experience going through it and with talking to doctors it’s not the same because when you actually talk with someone who with through it they understand you more”

 

https://likes.asos.com/14228/meet-the-girl-who-had-a-double-mastectomy-at-26/

This asos article is really fun and I think a lot of young girls will be able to relate to

I was also contacted by the editor of Cosmo in New York which was quite crazy 

http://www.cosmopolitan.com/health-fitness/advice/a47123/double-mastectomy-charley-wood/
I am also now writing for huffington post which is cool

http://m.huffpost.com/uk/entry/8221344

I have been told referrals in manchester have doubled since I put my story out there. I bet admin hate me. 

 There is no way I can bring my mum back , but hopefully raising awareness can prevent other people from losing their mums too 🙏🏼

A message from heaven

So my story was published on the daily mail online, the point being to raise awareness of genetic mutations and also to make other people feel at ease in the same situation…..

Daily mail

From some of the comments it is clear a lot of people have no clue about the BRCA1/2 mutations, and feel the need to comment some bizarre stuff…..

http://www.cancer.gov “inherited mutations in BRCA1 and BRCA2 increase the risk of female breast and ovarian cancers”


  

 

As you can see theres a lot of people out there who don’t have a clue, and a lot of nasty people too. Its quite clear this article is trying to raise awareness not “get my picture in the paper.” As it happens “Michael” I don’t think I look particularly attractive in those pictures carrying round bags of blood,which of course was a completely needless exercise wasn’t it? Also “Michael” I think your a knob.

God forbid some of these peoples loved ones get cancer and they feed them organic food, tell them not to get any fillings and oh of course, stop wearing that bra for such long periods of time! Because these are the things that cause breast cancer, right? Im sure if they were personally put in a similar situation they would be putting their lives in the experts hands and having things such as risk reducing surgery or regular screening.

I hope any women reading that article for guidance were not put off by the idiotic, pathetic uneducated people above.

Thankfully despite the above there were tons of lovely comments both on the daily mail, through Facebook, emails and my blog. Heres a selection….

        

    


As you can see the blog has helped a lot of women and I’m so glad. Awareness of genetic mutations making people more likely to get cancer is so important…I live without a mum which makes me even more passionate to make other women aware that this whole process CAN be done, meaning other children won’t grow up without a mum either. Lots of women put it off and then its too late and they already have the cancer. Other women don’t even want to get tested and would rather not know, which is obviously personal choice…..Im just trying to make those who have thought about the preventative surgery see it in real life and not be scared.

If my mum & grandma were more aware at the time and had the preventative surgeries (mastectomy & hysterectomy) they could still be here now, instead all I have is a memory box…..

It appears I have taken on her love of wine!

My grandma and I down in Poole one summer. I have no idea what my hair is doing.

My mum when she was on holiday, shame I didn’t inherit this gene!
  

My memory box

I have the dairy the year my mum was diagnosed. She was still working as a pharmacist and attending all her appointments. It appears she was getting Paul to decorate the bloody house too! One thing that got me was that she wrote a note in her dairy reminding her to take a book in for one of the nurses at Christies, she was always thinking of others even though trying to battle terminal cancer and run the family home. She took me down to London to watch the Lion King obviously trying to protect me from all the devastation surrounding everyone back at home.    


This was the last birthday card I received from my Mum.

Lastly a poem my sister wrote and read out at the funeral.

 A Message from heaven.

I know my time was short, I left sooner than I planned,

but il always be here with you, please try to understand.

Theres so many things for you to learn,ways for you to grow.

Remember me, be happy, miss me but let me go.

Dont cry because I’m gone, don’t be full of sorrow

smile because I loved and lived,look ahead onto tomorrow,

I live in the sparkle in your eyes, I live in what you do

Wherever you go in life my girls, il always be guiding you

My strength is now within you, I sent it from above,

I also sent my wisdom with my unconditional love,

so when your hearts are heavy, filled with the tears you cry,

Remember I’m apart of you, which means I did not die.

A breeze blowing gently across your face, a snowflake upon your skin,

these things you take for granted and never look within

Its time to stop and and wonder if theres anything you missed

that gentle breeze across your face, it was your mothers kiss.

By Vanessa Wood

8 weeks post op- bra shopping!!!! 

I thought now was the right time to go and look for bras. Although I have been told I can’t wear underwiring for 6 months I wanted to have a look anyway.

First stop- Victoria’s Secret!!!! 

  
I found lots of gorgeous bras in here, some styles just didn’t suit the implants. As foobs don’t give you as much of a cleavage because they don’t really move much, certain bras just don’t look great. 

I ended up with this collection !

  
The bra in the bottom of the photo is Rosie range by Mns. It a cute bra and has no wires so I can wear it now!

  

I also got a few sensible non wired bras. 

After a whole afternoon of yanking Bras on and off they were really sore! 

My friends mum made me a gorgeous quilt , it’s so thoughtful 

  
This is the lady who helped me Come up with the drain dollies design and showed me how it’s done!very talented sewer. 

I went out for dinner with my friends in the evening 

 
I wore my new lace bralet which was comfy but when I took it off every line of lace had indented into my boobs!! They looked like a train had ran over them in every direction! I guess that is because of the implant and it being so soft?! 

After wearing sports bras for 2 months I don’t think I will ever be happy in a bra again, they are just too comfy !! 

Xx

Genesis 

As you know genesis is the UKs only charity dedicated to breast cancer prevention + prediction

Now if we are hoping to eradicate breast cancer by a certain year, surely research into prevention is the most important thing.

  
Their research is split into 4 parts

Gene research 

Early detection and screening 

Preventative drugs

Diet and lifestyle 
   

  
Genesis invited me to their research event on Thursday evening which was put on for those who help fund the charity to understand what they do. It was so interesting and I’m so glad I went. 

Gordon burns presented the whole thing and interviewed various key doctors and professors involved in the research being carried out. 

Gordon burns is a great journalist and was on the news everyday was at school  

  
 

Genesis vision is to prevent breast cancer for future generations. If research wasn’t carried out into gene research, I may not of been able to have a preventative double mastectomy to reduce my chance of breast cancer, and I could have it right now and not even produce any future generations…

Lester Barr gave an overview of the evening he is the founder and chairman of genesis. 

Gareth Evans – Gareth is the genetic lead researcher. He discussed genes which give you high risk of breast cancer such as me, brca1 and 2. He is involved in a particularly interesting study at the moment called the RnA study looking closer into BRCA 1/2 genes in a different section. If there is a missed mutation in the gene the technique at the moment for testing may not pick this up, this research delves further into the genes looking into the rna as opposed to dna. Hopefully helping those patients who fall into this category

I’m hoping to see Gareth soon in the family history clinic. I would like to ask him more about BRCA1 and my ovarian risks. I’ve been told there’s no screening, so really if I got ovarian cancer I wouldn’t no until it was there, like my mum. 
Dr Michelle harvie discussed the importance of diet and exercise in the prevention of breast cancer. She wrote the famous book the 2 day diet. The aim of this was to make dieting easier with it being mainly focused on 2 days. Her area is particularly important as nobody relates eating well to not getting breast cancer? They relate it to not having a heart attack. 

Cliona Kirwan. Cliona is a breast surgeon but also researcher. She is looking into breast cancers link to blood clotting. She looks at certain anti coagulants and their impact on breast cancer. Obviously anticoagulants have side effects but if that particular property of the drug could be identified that helps with breast cancer, maybe this could be a big break through.  She’s a very busy lady! 

Dr Tony maxwell. Tony discussed a new screening technique which may  become the norm for women. Tomosynthesis allows the breast tissue to be seen in three dimensions as opposed to two. 

  
Professor Tony howell. Tony talked about drugs preventing breast cancer. He discussed tamoxifen (Discovered in manchester!!) which reduced your breast cancer by 40% but also mentioned another drug which could reduce it by 60%. The issue surrounding the latter drug has not been passed in parliament and is due to be discussed again on the 6th november. Let’s hope the off patent drugs bill goes through. 

It must be very frustrating for scientists  to know this drug exists and could help so many but due to certain barriers it cannot be used yet. 
I found all this info very interesting and promising for the future. All the doctors were so passionate about what they do and I really don’t know how they fit it all in! 

  

If it wasn’t for dedicated people like this I may not even be identified as high risk and could still have my breasts and more than likely get breast cancer.

I am glad I chose this charity to support with my drain dollies and look forward to keeping up to date with all their research 

  

Helping raise awareness. 7 weeks post op 😁😁

Time has flown since my operation! I have managed a week in Spain and got myself back to work so things have gone pretty well!!

I have been chatting to genesis about supporting their charity and the fabulous research they do. If it wasn’t for research into breast cancer prevention I may not be in the position I am in now- breast cancer free for the rest of my life. Knowledge is power 💪🏼

  
The village I live in during the month of October is doing a “bin the bra campaign” how this works is ladies put their old bras in these bra bins in various shops and the money raised by the weight of the donations goes to breast cancer awareness. The bras are then shipped out to third world countries where women can’t afford bras. I went along to the shop for the photo and to meet a few people involved, it’s a great idea. 
    
The ladies in the shop also had a look at a few of my drain dollies I had in my bag. They loved them! I’m so happy other people think it’s a great idea to produce these bags for women to help them along their journey. The photographer from the magazine took a shot of me “modelling” how they are used 

  

There were some lovely bras in see saw in hale, I shall be trying a few on when I pop in to bin my old bras! 

I’m really looking forward to actually buying nice bras now, before hand when I didn’t like my boobs I wasn’t so fussed what I wore. 

  I still haven’t been to Victoria secret to spend my vouchers I think next week may be the time!😍😍😍

Since my op I have joined various groups on Facebook relating to BrCa. I have met a girl who had her operation done by Mr Murphy a few weeks after me. She’s absolutely lovely and her results are amazing too!!!! (Boob twins) 

Drain dollies has kept me really busy and I have had a few ladies order some and had some great feedback. I’m really chuffed and so glad to help others. The days of pillow cases and plastic bags are no more! 

  
This lady was the first person to order drain dollies, she’s found them really useful and lots of people have commented on them on the ward !! 

I have managed to do quite a few plain colours and a few pattern so there is something for everyone. 

  

Unfortunately for me the journey doesn’t end here, I have got rid of my 85% risk of getting breast cancer .However…

   
 I’m seeing a doctor tomorrow about the ovarian side of things. The risk of this for me is 65%. I’m petrified as it killed my mum and has no symptoms. Hopefully tomorrow will bring some hope about screening my ovaries to keep an eye on them. As soon as I have children they will be gone! X

  

Drains Dollies

DRAINS! A patients best friends post op..

IMG_9529

Most patients having breast surgery and certainly double mastectomys will have drains post op. These drains go into the surgical site and drain off any fluid to prevent seromas (pockets of fluid) developing. This then comes out a thin tube and into a drain. I had my drains in for 2 weeks which is quite normal, some patients have them in for longer.

drain pic cut

  • Unfortunately hospitals don’t routinely supply drain bags to patients and therefore you have to carry these around yourself.
  • I saw my sister and various other patients during my times in hospital use plastic bags, pillow cases, all sorts of things. This meant my sister didn’t leave the house for a few weeks which I think is paramount for a speedy recovery.


So I decided I would make drain bags readily available to everyone who has this surgery donating a percentage of proceeds to the breast cancer prevention charity genesis . Genesis is an amazing charity that focuses on the prediction and prevention of breast cancer and is based at wythenshawe hospital where I had my op. If organisations such as Genesis didn’t carry out this important research I may not have been able to have my risk reducing surgery and would probably go on to get Breast Cancer.


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toaster

Having the drains in IMG_2701-0little bags I could carry was invaluable to me, not only do you/friends/carers not have to look at them all day, you can potter around doing things without having to carry them. These are things such as making toast, brushing teeth, and doing your physio exercises (which start from day 1.) I had my drains in for 2 weeks which is a long time to not have the use of your hands!

brushing teeth

This lady is 6 days post op, she kindly sent me the photo to illustrate how useful the drain dollies are.

Because the drains are stitched into your body you are naturally very careful with them. The bags provide a very safe secure place for them with ease of use. Which lady doesn’t have experience with a handbag?! The best bit is you can shove your mobile phone and medication in there too!!

4mandy

Here are some more photos of ladies using their drain dollies out and about.

“My 2 Drain dollie bags have made such a difference to my recovery from risk reducing mastectomies 8 days ago. I had 4 drains – 2 each side, and it would have been impossible to mobilise in hospital and get around now I’m home with out them . They have stooped me snagging my drain tubes and dropping my drain bottles – and kept the bottles hidden from view – so have actually even felt confident to go out in public now Im home . The bags are beautifully made and will make stylish tote bags once my drains are out tomorrow ! The fact these raise money for the charity Genesis , which is working towards preventing breast cancer will mean a lot to anyone buying them . Well done Charley, you’re a genius !”

“These Drain dollies bags are absolutely amazing, such a fantastic idea, no more struggling with your drains. Wished I had these when I’d had my surgery. I’ve just had a dressing pump put on, so I just got a bag, they are fantastic love it, so many people asked where I got it from & what a fantastic idea, thank you so much Charley xx”

When I went in for my surgery I searched high and low for drain bags and found nothing. There are many canvas bags on the market but I couldn’t find anything the right size with the correct strap length to fit the job. The strap length is critical because you are in pain and don’t have much movement in your arms initially, a shorter strap would mean raises your whole arm to put the drain in- ouch!

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IMG_1260

I want women to be able to access the bags easily and feel prepared for the surgery. The softness of the bag is comforting which is what patients need just after surgery. The drain dollies make having drains very easy to live with, and a nice bag afterwards too 🙂

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Some of the bags are plain with others being a bit louder there is something for everyone. I’m so happy to be able to help other women that are going through the same thing I have. Just being able to nip out for a coffee with a friend whilst still having drains can make such a difference to somebody’s recovery . Staying in doors for 2 weeks is no good, a stretch of the legs and some fresh air is fantastic. Drain dollies allow women to do this without the need to feel self conscious in any way.

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Drain dollies  are £6  with 10% of each bag going straight towards Genesis. Drain Dollies can be purchased directly from the website

Drain Dollies website

To like and view the Drain Dollies Facebook page click here Facebook page

The bags will soon be available to purchase on the Genesis website. To read about Genesis and the fantastic research they carry out please visit Genesis

Read more about Drain Dollies in Living edge magazine


Once your drains are out you then have a nice little bag, I have given a few to friends children and they absolutely love them!

bellaemelia

Once my drains were taken out I felt naked! After carrying them around everywhere with me for two weeks it was a strange feeling to be without them!

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