Sunday, 13 May 2018

Sister Stories: Melody Byl

My name is Melody Byl. I was 42 years old when I was diagnosed.  I am also mom of 4 kids; 23, 22, 15 and 15. I've been married for 18 years and I'm excited to have a grand baby on her way in June. 

It all started when I went to my yearly mammogram on September 21 2017 but first I want to rewind just a bit to tell you about my mother in law. She was diagnosed with DCIS May 2010. They found hers with her annual mammogram, she had a double mastectomy in July 2010 with expanders. 

October of 2014 it returned but this time we found out that it was in mets to her bones. She had a broken spine and ribs but the doctors could not find the source of her pain until one final fateful trip to the ER and an X ray showed the fracture. A pet scan revealed our worst fears - her cancer had returned, this time to her bones. Sadly she was stage 4 and it was terminal. She lived 2 years to almost the day of her diagnosis. She passed 10/4/2016.

I had gotten my mammograms since I was 38 years old . When I reached 42 , I realized I had forgotten the past 2 years to get one.  Something kept moving me to get one. The pamphlet from my dr's office told me I could get one after work and there is no waiting. In and out.  Perfect, I thought.

I went in on October 21, 2017 for a 3D mammogram. My insurance paid for it. Why not!! October 2 I get the call that something abnormal had shown up on my mammogram. I was asked to go in to get another scan of my right breast. I went in a few days later but as I was getting dressed the radiologist, the technician, and a nurse navigator appeared and told me that I needed a stereotactic mammogram guided biopsy. I was taken into another room. I was by myself with no other family with me. The nurse was talking to me and I was just in shock. I needed my husband and I needed him now!!! I called him, he was at work just down the street.  He rushed over to be by my side as the nurse explained the procedure to us. Unfortunately, they had no one available to do this type of biopsy for 3 weeks. 3 weeks?? That was insane!!! 

3 weeks came and I went in. My husband waited in the waiting room. During the procedure the radiologist cut into my breast & a large needled was inserted to get enough calcium cells to be able to biopsy. The problem was, I bleed a lot. I sprayed the entire room with blood. They were supposed to get 5 samples but because there was so much blood they could only do one. The radiologist told me that he really thought it was not cancer and that the previous radiologist had overreacted so not to worry. Go home, relax & your PCP will call you by Tuesday (October 31, 2017).

October 31, 2017 came.I had completely forgot that I was supposed to get my pathology report. My phone rang, it was the voice of my PCP.

"Is this Melody?"
"This is she, yes."
"This is Dr Varley, I have your pathology results back & it doesn't look good."

He then went on to say... bla bla bla bla pathology, bla bla bla bla, DCIS. Nothing felt real, I was in a sort of trance. What brought me back was when I heard my doctor say that a nurse navigator was going to call me to set up my appointments.

What appointments? My PCP said a surgeon and an Oncologist. It wasn't processing. 

"Wait," I said "Why do I need these appointments?"
"Because of your breast cancer."

I swear on my life I thought he was reading someone else test results not mine. 

My appointments were made. It was now October 31 and the local surgeon said he could see me in 2 days. He told me I needed a breast MRI because I had tons of calcifications in both breasts.  I was given an appointment right after Thanksgiving. I went and had the MRI and the next day saw the Oncologists in my small local town. He said my MRI looked bad and I needed to be referred to the breast center and their team at University of WI, Madison.

My 1st appointment was December 10. I saw the breast surgeon and the oncologist and I also had several more biopsies which confirmed I did not have breast cancer in my left breast, only in my right breast. They weren't sure how extensive the DCIS was. They were not very definitive, therefore I decided to have a double mastectomy with reconstruction which is also called DIEP Flap.

It is a 12 hour surgery and they scoop out the tissue in my breasts and use the fat and tissue in my tummy. I got a tummy tuck and new boobs. Win Win. 

I did not need chemo or radiation.

It was hard after the surgery. I was in theatre for such a long time so I was told the recovery would be very long too. I was in the hospital for 7 days. Typically patients don't leave their home for about 3 weeks. I am not typical and left the house with my mom about 3 days after surgery. Lol.  It took about 2 months for me to get to feeling like myself.  I am a Real Estate Agent and I started showing homes again about a month after my surgery which blew my doctors mind.

During surgery one lymph node was taken from my left and 2 lymph nodes from my right. On February 28 I was told I had no cancer in my lymph nodes. I had 8 cites of DCIS (Ductal Carcinoma In Situ).  This put me at a stage 1A. 

My breast cancer was Estrogen positive so I have to take a hormone blocker, Tamoxifen, for 5 years. I also plan on getting a hysterectomy July 9, 2018

I did not need chemo or radiation.

I want breast cancer patients to know and understand that there is a beautiful rainbow after the storm. It's important to remember to be positive and always surround yourself with a positive people but also remember it's ok to cry! I cried a lot on my husbands shoulder. 

This has been the hardest and scariest thing I have been through personally in my life. I felt like I was in an ocean with many life preservers thrown at me with names such as lumpectomy, mastectomy, radiation, reconstruction. I had to choose the right one to save my life and prevent recurrences.  I chose Diep Flap because I was able to get a tummy tuck and a boob job. Lol. My new breasts match my big butt which I am trying to loose with diet & exercise. 

I owe my life to my mother-in-law who's spirit guardian angel told me to get a mammogram & my Savior Jesus Christ. He got me through this storm. 

Tuesday, 8 May 2018

Sister Stories: Heather H Brown

July 28, 2016 my life as I knew it, turned upside down. I had gone in January 2016 for my annual mammogram. I had a baseline at the age of 35 and have gone annually since I was 40. My mother had some issues with her breast but hers always turned out to be benign. I had a great Aunt who died as a result of breast cancer but as far as I was aware, those were the only two issues in my family. So, the results came back in January and I was advised that I had calcification that showed up and had not been there the year before. The doctor did not seem too concerned but stated they would like to see me back in 6 months. I was not concerned either but did come home and do some research about calcification. In the end, I felt comfortable with the doctor’s suggestion.

Fast forward six months… we decided to sell our house, my oldest was graduating from High School in May, we had a graduation party on the books for June, and a cruise planned to celebrate my son’s graduation. Sometime in May 2016, I felt a lump doing a self-check. I had my husband feel the spot and he agreed he felt something. Not overly concerned because I knew I had another mammogram scheduled for July plus all that we had on our plate, I pushed it out of my mind. The house sold, we moved, lived in a hotel (Davidson Village Inn), moved into the new house, son graduated, had the party, and went on the cruise. Now it’s July 2016 and time for my mammogram. I had a normal mammogram, paid to do the 3D mammogram, but then they did not tell me to change back into my clothes, no, I set in a room and then was called to the ultrasound room. It was not until then did I ask the doctor, “So, what brings me to this point?” She said, “The calcification from January has turned into a mass and you have formed a new set of calcifications.” As I watched the screen, I knew the mass did not look good, it’s shape was off and the lump was grayish in color. The doctor asked for me to come back for a biopsy. I went for the biopsy on a Tuesday, my husband was out of town and my father was here with me. During the biopsy (not the most pleasant experience), I asked the doctor if someone should come with me for the results, she advised, “It probably would be good to have another set of ears with you.” I asked if she was concerned and she advised, “Yes, I don’t like how the mass looks.” I still was not concerned; my husband was not due back until the evening on Thursday but he insisted on coming back and going with me. Thursday comes around and the three of us (my husband, my father, and myself) head to the appointment. Out walks the doctor and another lady in a white lab coat, it was not until that moment that my heart began to beat really fast and my mind thought for the first time, “I am not going to hear good news.” Sure enough, my husband and I head back to the room and the doctor tells me I have invasive ductal carcinoma as well as ductal carcinoma in situ. What does that mean? Well, I have cancer and need to meet with a surgeon, oncologist, and plastic surgeon. Life started spinning out of control, everything was moving at a records pace. The surgeon advised I would need chemotherapy and a mastectomy. The oncologist wanted to start chemo 2 days after I meet with him. My husband knew I did not want to lose my hair, we had watched his mother go through breast cancer six years ago, so we kind of knew what was in store for us. He had a friend whose wife had been diagnosed with breast cancer and she keep her hair by using something called the penguin cap. My husband began to do research and found out that Wake Forest Baptist Hospital had just finished a study using the DigniCap. So, we set up an appointment at Wake Forest to meet with an oncologist there. I loved everything about the doctor at Wake Forest, she reminded me of my mother, whom passed away approximately 10 years ago. We were told we could use the DigniCap but that it was self-pay and not covered by insurance. My husband and I discussed the cost and both felt it would be worth it to give it a try, if I could keep my hair. I wanted things to remain as normal as possible and keeping my hair would be a big step in allowing that to occur.

So, Wake Forest Baptist Hospital was our choice for my chemotherapy treatments. My first chemo treatment began August 30, 2016, my husband and I arrived at the hospital bright and early. We checked in and I paid for the DigniCap (we did this at every treatment, as I could choose to not continue with using the DigniCap if I did not like the results). I signed disclosures and then was taken back to a private room to be fitted for the cap. It’s an experience, you have to wet your hair, in the small sink in the room, then sit on the bed with your hair dripping wet until they figure out the right size cap. There were many tries, the cap coming off and on several times, one particular nurse was about to cry because she felt the cap was “not perfectly fitting on my head as it should,” I told her “absolutely no crying.” That process took about an hour or longer, then we had to wait for the machine to cool to it’s proper temperature, negative 3 degree Celsius. Once the machine reached the desired temperature, they could begin the pre-meds and then the chemo. I had four chemo drugs that I was receiving, which took about four hours, then I had to cool down for two hours, still wearing the cap. Needless to say, the day was very long.

In between chemo treatments, I would go to the Oncology unit here in Huntersville NC, to receive fluids and have blood work. My chemo schedule was every three week and every week getting blood drawn. There were times my blood work was very low and potentially I needed a blood transfusion, I did not want one, so i asked all my friends and family to pray as well as myself that this would not be needed. Every time, God came through with my prayer request. I also have to have my heart checked every three months due to one of the medications I receive could damage my heart. I have had two of those and so far, my heart is just as strong now as when we started. My six rounds of chemo stopped on December 13, 2016. Overall, the process was manageable, it definitely got worse as the treatment accumulated but I could manage it with medication. I am happy to say that the DigniCap allowed me to keep 90% of my hair. I cannot tell you how much this affected my mind set, attitude, and overall well-being. I looked the same, acted the same, maybe a few pounds lighter but overall, I was me.

During my treatment, my half-sister, whom I knew of but did not seek out as my mother felt since she had to give her up for adoption, it would not be right to up root her family if she did not know she was adopted, found me on September 16, 2016. Talk about God’s timing, it could not have happened at a better time. Our biological mother had died 10 years ago, so she did not get to enjoy getting to know her first born.

Following treatment, the next step was surgery- scheduled January 13, 2017. Bilateral mastectomy plus the start of the reconstructive process and removal of ovaries and fallopian tubes (all other parts had been removed six years earlier). I needed three doctors to complete my surgery. The surgery would take approximately six hours. I stayed one night in the hospital and came home the next day. I will be going through the expansion process for a couple of weeks and then I will have to wait eight weeks before I can do the exchange surgery. During all this, I still go and receive my Herceptin infusions every three weeks until the end of August.

After my surgery, the pathology came back that there is “no evidence of disease, NED.” Praise the Lord! Throughout this journey, I looked to my faith for comfort of the unknown, I knew he had chosen me for this diagnosis and I knew the outcome was in his hands.

Closing, this journey would not have been possible without the loving support of my husband, Charlie Brown, my boy’s Conlan and Keegan, my father, Bill Howard, my newly found sister Seanette Meserole, and my Flock (Jo Ann Darby, Cindi VanWingerden, Stephanie Edwards, Nila Grier, Shelley Hartsell, Rena Taylor, and Jen Hellar), as well as Stephanie Bradley and Jenny Bodenheimer, plus a whole slew of family members and friends. As they say, “it takes a village” and it sure does.

My official diagnosis was:

Right breast
- High grade invasive mammary carcinoma
- Nuclear grade 3 of 3
- Mitotic rate: High
- Combined histologic grade High (9 of 9)
- Minor component of high-grade DCIS with lobular extension also present
- HER2+ amplified

Also had high grade DCIS with terminal duct lobular extension
Nuclear grade 3 of 3


Following my NED status I have since formed a nonprofit 501 3 (c) called Hope for Hair Foundation. Our mission is to provide support to cancer patients at risk for hair loss as a result of chemotherapy in two ways: Financial aid for DigniCap (or other cooling cap methods) and by educating and providing products that will help ensure successful hair retention.


For more information check out our website at www.hopeforhair.org.

Tuesday, 1 May 2018

Can I still have a massage if I've had cancer?

There seems to be a lot of confusion over whether or not you are allowed to have massages if you have cancer, are going through chemo or have had cancer and had lymph node removal. Someone had told me that massages can spread cancer around the body (although there is no evidence medical evidence to suggest this), another told me I couldn't have any massage at all anywhere on my body in case of lymphadema.

In fact so many people had told me I wasn't allowed a massage following my surgery so when I was approached to review a fantastic Balance and Calm Signature Treatment in partnership with Wellness for Cancer™ at The Midland Hotel Spa in Manchester, I jumped at the chance.

Prior to the spa day and treatment one of the therapists contacted me by phone for an initial consultation to go through all of my health concerns and ensure the treatment was tailored specifically to my needs. Knowing that I had spoken to my therapist before the session really put me at ease. The spa was fully aware of exactly where I was up to in terms of my illness so I couldn't wait to get there.

Treating my mother-in-law to a trip with me to the Spa we headed to The Midland Hotel. It's worth noting that you entrance The Spa at the side of the building.The first thing that hit me when we arrived was the amazing smell of aromatic oils. We headed down the beautiful winding staircase and were greeted by the reception team and shown around. The Spa has a gym, relaxation room, jacuzzi, pool, sauna, salt-infusion aromatherapy steam bath and an amazing lifestyle shower.

After being allocated a locker containing a robe, slippers and towel, we changed and headed to the pool area to relax before our treatments.

I spent most of my time in the pool and the jacuzzi however I was feeling a bit sniffly so thought I'd try the salt-infused aromatherapy steam room. It was fantastic for clearing it up. It's hot and dry but felt really good. To cool down, despite saying I wasn't going to get my hair wet I decided to head to the lifestyle shower. This is a huge shower that stimulates your circulatory system. It feels like being caught in a tropical storm - very invigorating!

At 1 o'clock we headed back to the reception area. I was greeted by Hayley my lovely therapist and we headed to the treatment room. The place is huge! The room was lovely and warm and I was told to take a seat so we could run through some further health questions. I explained that I'd had a unilateral mastectomy and sentinal lymphnode removal. Hayley explained that because of the few lymphnodes I'd had taken away she would adjust the treatment and avoid massaging in that direction. She explained each part of the Balance and Calm Treatment to me so I knew what to expect.

I was left in the treatment room to get changed and hop on to the heated massage table. Unfortunately I was really uncomfortable as I lay face down because of my expander implant but as soon as Hayley returned I let her know and she arranged some towels underneath my shoulders to take the pressure off and the first part of the treatment could begin.

To start the Balance & Calm Treatment I was given an amazing full body massage (back, arm & hand and legs & feet) using ESPA Nourishing Body Oil. I can not tell you how relaxing this was. The best massage I've ever had and I certainly needed it. All of the tightness is my muscles seemed to disappear and it seemed to go on forever, I almost drifted off I was so relaxed. Once the massage was complete I needed to move on to my back. Hayley held up the towel to protect my modestly so I could lie down ready for the next phase of the treatment, the facial.

I have to admit, I've never had a facial at a spa before - I usually spend my money on massages. I was surprised by how relaxing the facial was as I am usually quite funny about people touching my face! After completing the facial cleanse and massage with ESPA Tri Active Night Booster, an ESPA Overnight Hydration Therapy Mask was left on my face while my therapist moved on to a head massage.


Wow! I cannot tell you how amazing the head massage was. Hayley used ESPA Pink Hair & Scalp Mask and advised me to leave this on my hair for as long as possible. Luckily I had a hair bobble with me so I tied my hair up for the journey home.

The Balance & Calm session was just perfect. Everything I needed to relax after what has been the most horrendous 6 months of my life. I was transported away from my every day worries and felt so calm and at ease. I can highly recommend the treatment, I will certainly be going back again. My skin was just glowing and my hair had a new lease of life.

I know when I had mentioned in some of my online support groups that I was having this treatment some of you were asking questions so I made sure to ask them on your behalf...

Can I still attend the spa day if I'm receiving active treatment - chemotherapy or radiotherapy?

Yes, it is ideal to come just before or close attending a treatment as this is generally when you may feel ‘well’ or be feeling less affected by the treatment or side effects.

What if I've had full lymphnode removal?

It is important for us to understand if Lymph nodes have been removed or radiated so we can adapt the treatment to suit. In some cases it may be better to you touch therapy such as Reiki rather than a traditional massage however every single Balance & Calm treatment is bespoke and tailored to each individual.

Can I use the sauna/steam rooms/jacuzzi if I've got or had cancer ?

It is not recommended to use the thermal facilities as the heat exposure may make you feel unwell but it is entirely at your discretion if you feel well enough.

Is there anything in the spa that should be avoided at the spa for certain patients?
We would not recommend to have a rasul experience and certainly no nail treatments that include any cuticle work to minimise the risk of infection.

If you have any other questions then be sure to ask in the comments below and I can get an answer for you.

After the treatments we headed to the relaxation room. It's divided in to 4 seperate areas, all very calming and dimly lit to help you just escape your everyday.

Feeling really relaxed from our treatments we headed to the 'Big Sleep' area first. There are three small beds tucked away in the corner. Such a great little area to close your eyes and continue to leave your stresses behind.

In the relaxation area there are a number of complimentary teas for you to drink. We took some tea and then I headed in to one of the 'Hanging Pods' to chill a bit more. There are 4 pods enclosed behind a voile curtain.



There is also two 'Time Out' areas where you can kick back and relax in that the spa can actually close off for groups if you book ahead and a 'Lounge Seating' space where you can relax in a sound cancelling egg shaped chairs.

I absolutely loved this room, the only non relaxing part was trying to get out of the hanging pod. Let's just say I had the grace of a baby elephant!

By 3pm we were getting really peckish so we headed to the dining area for our afternoon tea.

We were served THE most delicious treats. Sandwiches with delicious fillings, cakes to die for - a manadrin cake slice, jaffa cake chocolates and pistachio and pear crumble cake.

We were so full that we had to take the scones, jam and clotted cream home with us to eat later on.

It was truly scrumptious and the perfect end to the day.



We could have headed back to the spa for more time in pool and sauna rooms or the relaxation area but we decided to head home.

I cannot recommend the Midland Hotel Spa's 'Wellness For Cancer' spa day highly enough. I feel amazing. I wish that everyone going through this horrible breast cancer journey could experience this. I can't tell you the difference it has made to me. For the first time in weeks I feel like my anxiety has taken a step back and I've been able to take a step away from the everyday pains and worries that this horrible disease brings.

If you are interested in booking for yourself or a friend then there are a couple of options, you can either book the treatment on it's own or book a full spa day.

Balance & Calm Signature Treatment
The Balance and Calm experience combines a personalised consultation, mindful touch and breathing, tension releasing back massage, nourishing facial including skin analysis with a
scalp and hand massage to leave you feeling refreshed and rejuvenated, enveloping you in calm.
and a soothing facial.

85 minutes for £105

Wellness For Cancer Spa Day

Including
* An 85 minute signature Balance & Calm treatment (as above)
* Either a light lunch or afternoon tea in the spa café
* Full use of the relaxation room, spa facilities and gym all day

Monday-Thursday £135pp
Friday-Sunday £155pp

Book online now

Disclosure: I attended the spa day free of charge in return for an honest review.

Wednesday, 25 April 2018

Drain Dollies -THE Mastectomy Must Have


Prior to my mastectomy operation I did a huge amount of research, in particular I was keen to understand exactly what happens after the op. I knew that I would definitely be having at least one drain inserted but I wasn't sure how I'd manage with something so strange attached to mt for over a week.

I'd seen so many women posting in forums about their drain struggles, having to pin them to their bras and their clothes and it seemed like so much hassle.

Luckily enough for me, I came across the Drain Dollies website.

Drain Dollies was set up by a lovely lady called Charley who went through a preventative double mastectomy back in July 2015 after she tested positive for the BRCA1 gene. It was when she was searching for something to assist with her drains that Drain Dollies was born and her first drain bags were made.

Fast forward a few years and Charley has now set up her own online store selling drain bags in lots of gorgeous quality fabrics and fantastic prints.

Just before my surgery I reached out to Charley and she sent me a gorgeous grey Drain Dollies bag to review post op. It was my saviour. I honestly couldn't have gotten through my post surgery journey without this amazing little polka dot Drain Dollies bag and that's why it was included as a must have on my Things To Pack In Your Mastectomy Hospital Bag post.

So how does it work, well I think the worst thing about having a drain in is that it could potentially restrict you. Just because I had drains,I didn't want to have to hide myself away from the world!

In hospital a few hours after my op
I started wearing mine as soon as I came around after the operation. Once I'd been assigned my bed the first thing I did was get changed out of the hospital gown and in to my PJs and popped on my Drain Dollies bag.

I just had a single mastectomy so I wore mine like a cross-body bag but if I'd had a double mastectomy I would have just worn a bag on each shoulder.

The great thing about Drain Dollies is that you can adjust the strap length. It's virtually impossible to lift your arms after your operation so these are perfect.

When I headed to the support group at the hospital the next morning all of the ladies were so jealous of my gorgeous bag.

Wearing the drain bag meant I didn't have to consciously think about my drain all the time. I could just get up and move around without getting caught on anything.

The best thing for me was that my drain was completely hidden away so I wasn't going to scare the children with it because I had it safely tucked away - no one wants a big bag of bloody fluid on display! It's great that you can just trow them in the washing machine too, I was really conscious of keeping everything clean so I knew I could pop this in the washing machine at any time.

I had my drain in for over a week and I honestly don't know how I would have coped with the Drain Dollies bag. Thank you Charley for making my post op experience a hell of a lot easier.




There are so many different fabrics to choose from, headover to the Drain Dollies shop now to pick your own.

If you're about to embark on a mastectomy then I wish you all the luck in the world.

Take care x


Disclosure: I received a free Darin Dollies bag to allow me to post this review.

Thursday, 19 April 2018

Sister Stories: Kim Hamilton Mennillo

Greetings, fellow breast cancer warriors! My name is Kim, I live in North Carolina, married with two marvelous children and four fantastic grandkids! The biggest blessing of all that came from having cancer is that I completely changed careers and went into the healing profession of massage therapy. Cancer has been a gift is so many ways!

My life with cancer begins . . . well, it begins in 1959 when my grandma was sitting in the back seat with me on a car trip, patted my thigh and said to my mom, "Mother, there's something wrong with this child's leg." I was four. The tumor was benign, but its removal was not the end.

At age 17, a senior in high school, I discovered a lump in my right breast, as well as another one in my left thigh in the same spot. There were actually two lumps in my thigh all wrapped up in muscle. All benign again, but the doc advised me to eliminate caffeine from my diet as the diagnosis for the breast lump was fibrocystic disease. He was also way ahead of his time, sternly urging me to never wear underwire bras so lymph fluid around the breasts would flow the way it should to keep them healthier.

Time passed, I married in 1977, and had my first baby in 1979. On a trip home to Ohio to see family, I caught the flu bug from my grandfather. Sick as a dog when my son was only four months old, stressed from being a new mother and facing a major move, my immune system attacked again and when my son was six months old, I was diagnosed with hyperthyroidism and Graves disease. No amount of medication brought it back to normal, and after another major move in 1981, I was given the option of having my thyroid removed surgically or swallowing radioactive iodine. I opted for the later and became hypothyroidone month later. I was also told to wait a year before being allowed to conceive the second child we wanted.

Our daughter was born in 1983 shortly after we moved into our new home. One day, a year later, as I stepped down on my left foot while carrying a load of laundry upstairs, I felt a familiar "pop" in my thigh. "Oh, not again!" I sighed heavily. More surgery, larger tumor, this time not so good a diagnosis—malignant neural sarcoma. The tumor was sitting on a nerve and it was the size of a goose egg! Quite concerned about my tumor-prone history, the surgeon recommended removal of part of the vastus medialis (inner thigh) muscle so these tumors would not keep recurring. He noted how each time the tumors came back, they were in areas north of the previous surgeries. If that continued, he was afraid the cancer would eventually return farther up my thigh and into the lymph nodes of my groin, which then would be much more serious and difficult to fight.

Believe it or not, all of my past tumors had clean margins and the cancer in my thigh had not spread, either. Regardless, he felt preventive surgery was necessary, so two months after the removal of that very large lump, a divot-sized section of muscle and skin was removed from my thigh. A divot! Leave it to a doctor to describe one’s surgery in golf terminology!

I rehabbed quickly, needed no chemo or other adjuvant treatment and prayed my cancer journey was over. I did have one slight scare. A couple of years after the preventive surgery, an x-ray picked up a spot on my femur. The doctor was concerned and ordered another test after a period of time to see if it changed in any way. I came home, told the kids we were going to do some Shakespeare and they would be allowed to swear! I asked them to get very close to my leg and shout, "Out, out, damned spot!" They loved it. And yelled it. Over and over (after all, I never said how many times they could swear!) We all giggled, but I couldn't stop their fun. It empowered them to take part in Mama's healing process. Don't you know that spot was not there at all when the next x-ray was performed! My little miracle workers!

So, no more cancer, right? Bwah ha ha ha ha ha! But, hey, not in my leg, anyway. Five years passed and while doing my routine monthly exam, I thought I felt a lump in my right breast. Saw my OB-GYN who said, "No, but you do have one in your left breast." Ordered a mammogram which showed nothing, then sent me to his wife's surgeon. He didn't think it was anything, said I was too young for breast cancer (I was 32) and advised we "just watch it." (Ladies, NEVER let your doctor say that. Please insist on a biopsy.) I went home happy, thinking I was free and clear.

Six months later at the city pool, I turned over onto my stomach while tanning and jerked right back up again. THAT HURT! My hand went immediately to my chest, in pain from lying on hard concrete. At home, with my thumb and fingers around my areola, I could move the lump all around in any direction. That sucker was directly behind my nipple. I had my mom check to see if she could feel what I was feeling. She did, and she cried, hugged me hard and begged me to go back to the doctor. Her mom (my grandma who discovered the lump in my thigh) passed away in 1975 from metastatic inflammatory breast cancer because she, too, was told it was "nothing."

Naturally, I went back to the surgeon who, upon examination, said, "This needs to come out." I didn't say anything, but I was thinking, "No shit, Sherlock!” He ordered another mammogram which again showed no tumor, and scheduled the surgery. I had since turned 33 and my first devastating realization was, "I'm the age Jesus was when he died on the cross!" And yes, this time the tumor in my breast was malignant (ductal in situ). The surgeon was standing over me, crying, as I awakened in recovery. He apologized profusely and said, "I really didn’t think you had cancer, but you do." To which I looked up at him and groggily replied, "I know." Somehow I knew something wasn't right. For a long time I had just felt soooo extremely tired, which I came to find out later is one of the most common symptoms of cancer.

At that point, the doctor gave me two options: 1) go home and discuss your options/treatment/etc., or 2) have a mastectomy the next morning. When he told me the removal of the tumor pretty much destroyed what was left of my very small size A cup breast, I said, "Take it off. Nothing to think about." I knew my family would just want me to live. I was done with childbearing and nursing, and having a breast or not made no difference at all to my husband.

During the first appointment with my oncologist, I begged him not to give me chemo. I remembered the horrible experience my grandmother had with it and didn’t relish the same for myself. Fortunately, he agreed and said a five-year course of Tamoxifen should do the trick. (I was actually in the first study group of PREmenopausal women to take this drug. The results were so positive for postmenopausal patients, the medical community was eager to try it with younger women.) I was so excited about NOT taking chemo, I called my mom to give her the good news. She said, "Honey, Grandma didn't have chemo, she had Cobalt treatments." I replied, "Oh! Well, ignorance is bliss, huh? The doc said I don’t need chemo anyway."

My breast cancer tumor margins were clean, there was no lymph node involvement and I pretty much sailed through Tamoxifen. For four and a half years of the five, anyway. I started having every side effect, including the rare ones (the most bothersome being vaginal discharge every damned day—truly, it’s a wonder I didn’t have toxic shock syndrome!), and asked the doc on March 17, 1992, if I could please stop taking it. He replied, "Yes, you're doing very well. I believe I can safely say you're cancer free!” I smiled and said, "It's St. Patrick's Day...what a lucky day to stop taking a drug!"

Shortly after my first mastectomy in 1988, I started to attend breast cancer support groups. Alas, the only groups around were filled with women in their 60s, 70s and 80s. I had little in common with these women other than the fact of breast cancer. I was young, my children were still home, I was still in the workforce. Fortunately, I found three other younger women who felt the same way, and the four of us co-founded a support group for pre-menopausal breast cancer survivors. It was such a wonderful thing to have this kind of sisterhood, camaraderie among women the same age, with similar concerns and questions. We laughed and cried together, grieved when someone in the group died and worked with the medical community to reach out to as many young breast cancer patients as possible. The only problem after our first meeting is that we didn't know what to name the group. And this is where humor during recovery comes in. I told my husband we had an amazing group of women but we didn't know what to call ourselves. He looked at me and deadpanned, "How about 'The Young and the Breastless?'" I was mortified and declared, "We can't name ourselves that! How is that going to look on a brochure?" Well, much to my surprise, the group loved it! And I learned a valuable lesson. NEVER take yourself or your illness or your treatment too seriously. Lighten up. Have a good sense of humor and share that with others. Laughter and humor will get you through cancer better than almost anything else. By the way, our literature read The Y & B Group and we told everyone in the medical community that stood for The Young & the Beautiful, but those of us in the group knew what it really meant!

A year after my mastectomy, I had my right breast removed prophylactically. Every month when I did my self exams I drove myself crazy with worry. Am I feeling something there? Or is that just scar tissue? WHAT is this? I decided enough was enough, underwent a second mastectomy and had saline implants (Becker tissue expanders) put in on both sides. Five years, ten, fifteen, twenty...with each passing year breast cancer was less and less on my mind. Except for in my career as a massage therapist where it took on a whole new meaning.

During my 1988/89 recoveries, I was re-evaluating my life, trying to decide what I really wanted to do or be. In the fall of 1990, I enrolled in massage school after the relief I got during a very painful period of my reconstruction. The release of the tension between my shoulder blades felt so good, I knew early in my education I wanted to take this career in the direction of helping others who had breast surgery. I have been blessed to offer my specialty in breast surgery massage to many clients, as well as teach this modality to other therapists. This year is my 26th anniversary of being a licensed massage therapist and it has been very rewarding and humbling. I truly feel it has been my way of giving back to the cancer community.

Aaaaand then just when you think everything is going so well, a new wrinkle messes up your freshly pressed life. It was the morning of Pi Day, March 14, 2015. My hubby and I were all set to get up, get dressed, go out and get a pie to share. Not so fast there, Skippy! Stretching to get the kinks out before I got out of bed, my hands ran down over my shoulders to get the circulation going, when, UH OH! "Honey!” I called out to my hubby. “I've got a flat tire!" The right saline implant had completely deflated after a well-behaved, 26-year run. How dare it give up on me! My "girls" were nicely rounded, high and perky on my chest and I hadn't worn a bra in 26 years! Now I'm going to have to wear one to hide this defect until I can get it repaired? NOT FUN!

Quickly, I called a friend who used to do bra fittings for mastectomy patients to ask if she had any fiberfill inserts I could borrow. Also had to find bra in that long forgotten section of my lingerie drawer. I was surprised it hadn't deteriorated after so many years of non use! Asked her, too, for plastic surgeon recommendations here in Charlotte. I knew no one as all my surgeries had been done in Ohio. After doing a bit of research, I realized the deflated implant would have to be removed, preferably within two weeks to avoid any possible infection. God love my friend, she helped me with all my requests and kept checking with me to see if I needed anything else!

The Becker tissue expander is no longer being used, and my new plastic surgeon recommended the "gummy bear" implants. He had a difficult time on the right side with scar tissue and the surgery took longer than expected. For whatever reason, these new implants never felt right. The year after they were installed, I needed a capsulorraphy to keep them from falling to the sides when I lay down. The one on the right still sat lower, so I asked for an inframammary fold lift. The doc agreed, but said he might have to use mesh to hold it in place. Then the bombshell! The implant on the left had developed capsular contracture, so it would have to be removed and a new implant put in. I was NOT expecting that! My body was rejecting them. However, not knowing what else to do, I was all set to have that surgery in early January of 2017 until I was giving a massage to a client who had the DIEP flap procedure. I was so impressed by the way she looks, and after speaking with a couple more DIEP flap patients, I scheduled that surgery for early March. Since implants have to be replaced every 10-15 years, and I would be 70-75 years old had I decided to go that route, I am so glad I had an operation using my own body's tissue. One and done! And no more foreign objects. Hallelujah!

Phase 2 of the DIEP flap surgery was done in November of 2018. The only existing challenge at this point is a bit of lymphedema above the abdominal incision. I am currently seeing an occupational therapist for relief from this swelling. She is using manual lymphatic drainage techniques and kinesiotape to redirect the lymph flow, and cold infrared therapy to break up underlying scar tissue. At home I’m applying scar reducing tape along the abdominal incision and breast scars.

My story will continue, I'm sure. The BRCA 1&2 tests I finally had done show no hereditary connection, so my daughter and granddaughters can breathe a little easier. I realize I am extremely lucky that I have not had to endure the horrible side effects of chemo and radiation of most of my fellow cancer warriors. My experiences, nevertheless, have been challenging in their own ways. Truly, I fret more over my thyroid condition and its continuing impact on me than I ever have with breast cancer concerns. Eternally grateful for the path God has, in his infinite wisdom, deigned me to take, I fully expect to enjoy a long and healthy life, serving others through support, massage and any way I can be of service on their journey to health and wellness.

NOTE: I purposely did not cite any or all possible risk factors I might have had for getting breast cancer. Suffice it to say, there were many, including hereditary, environmental, and occupational ones. I was born and raised in a very polluted area of southeast Ohio, but I do not and cannot place blame there. Yes, there was cancer in my family, but genetic testing was not done when those relatives were alive. It is pointless to lay blame anywhere. All I can do and continue to do, is take charge of my health and do everything I can to stay healthy. I hold only myself accountable and my faith in God is firm and unshakeable. I’ll be 63 this July and count every birthday as a precious gift. Never will I be one of those women who doesn’t reveal her true age. I’m eternally grateful for every one that rolls around! And if you count my age in years as a breast cancer survivor, I’m really only 30 years old!

To everyone, I wish you good health, a sparkle in your eyes, a smile on your lips and joy in your hearts as we walk this journey together. And be sure to keep your sense of humor! May God bless us all!

Kim Hamilton Mennillo
Cornelius, NC

Wednesday, 18 April 2018

Free Mastectomy Pillows - Jen's Friends

Those of you that have read my What To Pack In Your Mastectomy Hospital Bag post will know that I classed my mastectomy heart shaped pillow as one of the most important things on the list.

Post op I was really sore and used the pillow under my arm whilst I was lying down. When I was on the move I tied the ribbon diagonally, across my body, sitting under my arm to take the pressure off.

The great thing about my pillow was it was FREE! Each pillow is hand mad eand comes with a handwritten note- they are just beautiful.



If you are having surgery and think you could use one of these fabulous heart pillows (or two if you are having a bilateral mastectomy) then head over to Jen's Friends Facebook Page and drop them a message stating how many pillows you'd like along with your address.

The pillows are free but all they ask is that you contribute to the postage. You'll need to donate a minimum of £3.50 towards postage and packaging if in you're in UK or $7 if you are in the USA. Payments should be made through Paypal.



I can highly recommend these pillows and I think that Jen and her pillow army are doing a fantastic job!


Monday, 16 April 2018

So I found another lump...

These past few days have been hard. I've been in a lot of pain because I'm having issues with my expander and my scar tissue.

That however is the least of my worries. I have a new lump. A lump in my 'good' breast. I tried not to panic, but that's easier said than done, life after cancer is hard - especially since losing Dad within weeks of his diagnosis - it makes you realise just how fragile life can be. Every lump, every bump, every twinge, every freckle, every pain, every single out of the ordinary thing sends me in to a panic.

I'd hoped... imagined... that after getting my 'no evidence of disease' status that I'd be euphoric, I'd move on with my life, go back to 'normal' - whatever that may be. Sadly not, I'm stuck, I'm still in pain, I'm feeling low and the anxiety that 'IT' is coming back is surely going to send me insane.

So was lying in bed on Wednesday doing my usual boob check and something had changed. There's a new lump - in the 9 o'clock position on my right boob. There's something else too - like a thickening inside my boob across that right hand side.


I panic.

So I call the breast nurse team. As usual when I call, I'm greeted by a voicemail message. The message says if you leave a message before 3pm they will call you back the same day. It's lunchtime. I was out of breath and clearly upset on the phone as I rattled off my concerns.

Then I wait.

I know the breast nurse team are really busy so I don't want to call again but I'm so anxious and really need some reassurance. Sadly the clock reached 6pm and I knew they definitely weren't calling back that day.

Thursday morning I'm woken to my mobile ringing. I'd hardly slept a wink with worry and knew the 'PRIVATE NUMBER' on the screen would be my nurse. She'd got my message. She tells me not to worry, I have an appointment with my surgeon anyway on 3rd May so they will just check it out then. Groggy and half asleep I agree and say my goodbyes. Then I realise that that is 3 whole weeks away!!

I had an appointment with the nurse at my GP surgery on Friday morning so I decide to mention it to her. She agrees to have a feel and immediately she is concerned too. Not only can she feel the lump and the thickening, my lymphnodes are swollen in my armpits and my groin too. She tells me to call my breast team and insist on an investigation asap.

I call the breast nurse line, one of the team answer. My usual nurse isn't available but I've met the nurse that answered and I explain whats just happened. I tell her I'll actually be at the breast clinic at 2pm anyway for my post op physio session and would be really grateful if she could have a feel and hopefully put my mind at ease. She tells me that's fine and to ask for her once I've finished my session.

Thank god.

Physio was horrendous. Agony in fact. I explain to my physio about the new lump and surprisingly she basically repeats the conversation I had on the phone 2 days ago. Don't worry, your seeing Mr M on the 3rd May anyway so he'll check it out then.

I tell her that I was told the nurse would see me after the session but she said, there's no one here, you'll have to just wait now until you're back in May. What the hell?!

I leave the consultation room, heart pounding and feeling sick. As I walk out I see a friendly face, a lady called Allison that had her operation the same day as me. I explain my anxiety at finding this new lump. The physio calls me back in to fill out a survey on my progress and while I'm gone Allison asks at the reception desk if one of the breast nurses is free to see me.

When I come back out, Allison tells me there is someone free. Thank god. So I head to reception and ask for myself. She heads through to the back to ask, I see the nurse there that I spoke to on the phone, the one who told me she would see me. The reception then returns telling me that I already have an appointment on 3rd. For Gods sake! She said if I'm still worried I can call back Monday. If I'm still worried?! Oh why would I be? Let's just forget that cancer has already stolen one boob and carry on as normal even though I could have something horrendous growing inside me!

So here I am, 2.30am in the morning, unable to sleep because in my head it's back. Fantastic.





Wednesday, 28 March 2018

What happens during a breast expander fill?

So today was my final breast expander fill following my mastectomy. A few people have asked exactly what happens during the short appointment so I thought I'd share the procedure with you.

Breast Expander Implant
Firstly, left is image of what my expander implant looks like, this should help you understand how the procedure works.
The outer part of the expandable implant is made of of silicone gel and inside is an inflatable, inner chamber. The inner chamber is where the saline collects as you have your fills. The darker part of the expander that you can see on the image is the valve or port. The saline is injected through this valve and in to the inner chamber, stretching the muscle that is holding the expander in place. Once full, the full expander stays in for around 3 to 6 months before its replaced with a full silicone implant.

The fill procedure may be done by your surgeon or the breast nursing team. Usually the first fill is done in theatre when you have the implant inserted the you return every week for a top up. My expander takes a maximum of 400cc of saline. 250cc was added during my surgery and this will be my third 50cc injection at the clinic.

So here we go, here's what happens during a breast expander fill appointment...

Once in the consultation room I head behind the curtain and remove my clothing - just everything on my top half - no full nudity required! Your nurse will give you a gown to cover up and once you have it on you can lie down on the bed.

Get comfy and relaxed, you don't want to have to move midway through the process.

Once your comfortable the nurse will use a special device called a 'Magna-Finder' to locate the valve in your expander.

Locating the breast expander port

The nurse will move the Magna-Finder across the breast and as she does the vertical magnet will be pulled towards the magnet in your expander. When it is completely vertically straight, its in the correct place. The nurse or surgeon will then mark up the injection site - usually using a biro!


A larger needle is used to draw the saline

Next the nurses will prepare the syringe. Everything is sterile and is laid out on a trolley. To fill the syringe with the saline, the nurses use a large needle. Do not worry about the thickness of this needle! This is just the needle that is placed in to the saline solution and then as the nurse pulls up the syringe plunger the saline is drawn in to the syringe.

The needle they use to fill the syringe is much wider than the needle that goes in to your body during the procedure. In fact the nurse told me the needle they use is just the same width as a needle they use to give immunisation jabs.

Once the syringe is filled with the correct measure (this final fill was 50cc for me) the nurse will switch the to the finer needle and you're ready to go.

Lining the needle up to the pre-marked area, the nurse injects the saline directly in to the implant. The fill takes less than two minutes and for those or you that aren't queasy, you can watch the clip I recorded of my final fill below.

Friday, 16 March 2018

What To Pack In Your Mastectomy Hospital Bag

Now that my surgery is over thought it might help for me to share the things that I needed during my stay in hospital.

Try to remember that after your operation your arm movement will be really restricted and you'll have drains in place. Here are my top takes:

For the Hospital

Slippers - make sure these are non slip. The last thing you need is a fall when you've just come round from anaesthetic.

Dressing Gown - in the UK you are usually asked to wear your dressing gown to walk to theatre before your operation.

Underwear - an obvious one I guess but if you are having DIEP flap surgery then big Bridget Jones knickers that go over your tummy scar are best.

Front Fastening Post Surgery Bra
- It is virtually impossible to wear a backwards fastening bra after surgery because of your restricted arm movement. In the UK your breast cancer nurse will provide you with one front fastening bra the day after your surgery. I've found this the most comfortable post surgery bra I have and I sleep in it every night at the moment as it supports the weight of my expander.

Button Up Pyjamas - as soon as I woke up in my hospital gown I wanted to get changed. There was blood on my surgical gown and I needed it off. I waited for Chris to arrive and help but again, ensure its front fastening and button up so you can get in and out of them yourself. I bought a pair a size up as I knew that I would be swollen and carrying my drain around. Elasticated waist is a must too so that you can pull your pants up and down easier.

Drain Pouch Bag - Literally THE best thing I had in my bag. I've heard so many stories of women having to pin their drain bags to their tops, their bras etc but I researched and got myself a Drain Dollies bag. I just had a single mastectomy so I only needed one but if your having a bilateral mastectomy then get two - one for each side.

Mastectomy Pillow - When I came round after my op I was quite uncomfortable under my arm - possible due to having the sentinel node biopsy. Luckily I had ordered a FREE mastectomy pillow from Jen's Friends. Again I only needed one but if your having a double mastectomy then get two.

Snacks - If you've read my Mastectomy Day Diary then you'll know that I had to wait for ages to be fed after my operation. Pack some healthy snacks in your bag so if you're feeling peckish outside of hospital meal times you don't have to wait on someone else. Make sure they're individually wrapped if you can - for hygiene.

Straws - lifting a cup to your mouth is hard so straws are a must. The hospital will probably have some but I packed some in case.

Medication - always take any regular medications with you and hand them to your medical team so they can ensure you are taking everything you need to whilst you are in their care.

Toiletries - again seems like an obvious one but the things you are most likely to forget! Toothbrush, toothpaste and wash things. I took face wipes so I could freshen up through the day.

Make Up - Some of you might thing this is daft but I wanted to feel more like myself for visitors and for the journey home.

Mobile Phone & Charger - I took my own portable charger in case there were no sockets available. I hate being out of contact with my family so my phone was a must.

For Heading Home


Front Fastening shirt - again this is for ease - to assist with your drains and with your arm movement. It's impossible to pop anything over your head because you cant lift your arms. Again I bought oversized because of swelling,

Elastic-Waisted Pants or Leggings - do not make the mistake of taking button up jeans. It's impossible to do up the buttons and pull up the zip! Elastic pants are easy to get into and out of and wont have you splitting your stitches.

Slip-on Shoes - avoid laces and anything that needs effort to pull on. Bending is hard and sore so the easier to put on the shoe, the better.

Pillow
- I took a normal bed pillow to put over my front and fastened the seat belt over that to protect myself. I could feel every single bump in the road as we drove back.

When You're Home

Pillows, pillows, pillows - I had to sleep upright for two weeks post surgery and for some people its longer. It can be really difficult to get comfy. Thankfully my painkillers knocked me out most nights. What pillows are best is really down to you. Some people prefer v-shaped pillows to prop them up. I personally used two really firm memory foam pillows vertically behind my regular two duck feather bed pillows.

Prepared Meals in the Freezer - you must remember to eat to stay strong. Having some meals already stocked up is a winner as you won't be able to lift and cook as usual.

Medication
- I kept all my meds close to me in a toiletry bag next to my bed. It's worth remembering that you are unlikely to be able to open anything with a child proof cap so try and transfer anything in to an easy access container.

Thursday, 15 March 2018

UK Benefits - What Can I Claim if I'm only on SSP?

As if worrying about your health isn't bad enough when you're diagnosed, we then find ourselves in a constant state of worry over our finances. For me it was a huge burden because I am the sole income earner in the family. I have a great job but having 3 surgeries means I've been signed off for a few months and unfortunately being new to my job means I'm only receiving SSP.

First of all I found a great website called Turn2Us that allowed me to calculate what benefits we might be entitled to. Still I was worried because I would still be employed just on a very low income so I wasnt sure if we could even claim for benefits.

Luckily following my Dad's illness I was aware that Macmillan had a help line that would be able to assist and give me some guidance. The helpline is fantastic, it offers help and support on everything from your illness and treatment through to employment law and finances.

 Macmillan Helpline: 0808 808 00 00 

Macmillan took all of our details and as we were in a qualifying area for the Universal Credit roll out, we would be able to apply.

You can find out if you’re eligible by using the Citizens Advice eligibility checker

The application process was relatively simple for us as we're online savvy. Just head to the Universal Credit site and click start. You'll be asked loads of questions about your circumstances, your earnings, savings, number of children etc. If it's a joint claim then at the end of your application you will be given a reference number so that your partners application can be linked to yours. They will need to complete the same questions and their income and earnings will also be taken in to consideration.

The amount of Universal Credit you receive will be made up of a standard allowance and any extra amounts for children, disabilities or health conditions and if you need help paying your rent.


STANDARD ALLOWANCE



ALLOWANCE FOR CHILDREN




ALLOWANCES FOR DISABILITIES & HEALTH CONDITIONS








You may also be able to claim money to help with housing costs - it's all dependent on your age and circumstances but it can cover rent, mortgage interest, some service charges and interest on loans secured against your house.

The final step you must do to complete the process is verify your identity. This was the only thing that really caused us issue as we had to have our Passports and Driving Licences available to photograph. Chris had lost his passport and I couldn't find my driving licence so we both used different apps to verify. I used the Post Office Gov.UK Verify app whereas Chris used the Experian Verification.

Once you (and your partner if its a joint claim) have completed your online application you will then need to call the Universal Credit helpline on 0800 328 9344 to arrange a face to face meeting at the Job Centre. This appointment is for you to have your ID checked again and you will each be given a claim number.

Each time you receive an updated sick note (now known as a 'fit note') from the doctor you will be required to log it on the Universal Credit website and then physically take it in to your local job centre for them to verify and approve. You must do this otherwise your claim may not be processed. Once you have been your online journal will show as complete. I took mine to our initial meeting they just check it and then hand it back, then you'll need to send it in to your workplace so you still get your SSP.





It takes around 5 weeks for the first payment to come through and was paid direct in to the bank. Our Job Centre advisor was lovely and explained that if we needed help to pay our bills or cover any other costs while we were waiting for our first Universal Credit payment then we could do that with him.

In addition you can also apply for free school meals for your children and a council tax reduction while you are claiming Universal Credit. To apply you will need to contact your local authority. It's worth noting that claims are only backdated to the date you apply to try to do this as soon as you apply for Universal Credit.

If you have any questions at all just leave a comment below and I'll get back to you straight away.


Wednesday, 7 March 2018

Mastectomy Results Day

I wake up apprehensive and still tired. Our appointment isn't until 3.10pm which just prolongs the agony. We arrange for Grandma and Grandpa to pick the children up from school and head off. It's a strange journey. Chris and I hardly speak, we just listen to The Greatest Showman CD for most of the journey. When 'This Is Me' come on the lyrics hit me.

I've learned to be ashamed of all my scars
Run away, they say
No one'll love you as you are...

These past few months have been so tough. I've piled on weight which hasn't helped but more importantly I've lost myself. I feel different, less confident and despite my positive and bubble personality, I hate what I see when I look in the mirror.

Soon enough we arrive in the car park, we hold hands as we walk in to the hospital. I give my name in at the desk and head to the usual waiting room. My heart begins it's usual pounding. I hate the waiting, its agonising. For me not knowing is worse than knowing. I hate the unknown.

Despite our usual hour in the waiting room, today we are called out of the packed waiting area after about 10 minutes - this never happens.

"Leanne Nash"

I real of my date of birth and head in to see Mr M. Today as well as my consultant and two nurses there is another man in there, he's introduced as the Lead Registrar. I'm asked firstly to head behind the curtain and take my top clothes off. It seems daft that they pull the curtain over so Chris - my actual husband - is the only one that can't see my baps!

Mr M says everything is looking good. They had added 250cc into the expander during surgery. Today he would add 50cc more. The needle is huge, so much so that Mr M makes a joke about it being like the needle from Pulp Fiction.



Looking at that image though, Id say my syringe was definitely bigger. Don't panic though ladies - the needle itself is no bigger than the needles they use to take blood.

It's a strange sensation as the saline goes in. The expander moves around inside as it's filled, it's uncomfortable but it's nothing compared to what I've been through so far. My heart is still pounding, wondering the outcome of the results so the syringe moves up and down as my chest moves.

Once complete I get dressed and head back out beyond the curtain. It's time.

"Ok, we've got the histology results back. There was more DCIS in your breast - another 10cm - so in fact it was basically right through your entire breast...

...BUT... (I cling on to this 'but' for what feels like an age, awaiting my fate)

...we have managed to get it all. We've discussed your case in the MDT meeting this morning and because no invasive cancer was found and the lymphnodes we took were clear, you will not need and radiotherapy or chemotherapy."

THANK GOD. SCREAM IT FROM THE ROOFTOPS. DING DONG THE CANCERS GONE.

He continues to tell me I definitely made the right decision having the mastectomy. There was always a chance that there would be no further disease at all and that my breast could have been saved but in my case my whole left boob had been riddled.

The only remaining treatment -  should I decide to take it is a tablet called Tamoxifen. Mr M tells be approximately 13 times that one of the main side effects is vaginal dryness. No word of a lie - they are pretty much the only words I remember from that discussion. And, whilst vaginal dryness is certainly no laughing matter, I did struggle to contain my giggles.

Rather than deciding what to do straight away, I'm given a leaflet to take away and decide over the week what to do.

For now though, with my aching filled up boob, we head home with the best news we've had in 6 months.

Another Sleepless Night

I can't sleep... again. Tomorrow is results day. I find out what histology has come back with from my bad boob and my lymphnodes. There's every chance it could come back completely clear but there's always a chance that they find something nasty - an invasive cancer. Even if it's clear there's still a way to go with treatment - maybe radiotherapy but definitely tablets for 5 or 10 years since my cancer is fed by Oestrogen.

I feel sick to my stomach but I'm really trying to stay positive. Hopefully I will get some sleep tonight.

Tuesday, 20 February 2018

Mastectomy Day Diary

Midnight
I stayed up late to have a bowl of my favorite Weetabix Minis Chocolate Crunch. Now matter how hard I try and so nervous about the operation that I can not sleep. I listen to my Calm app but it doesn't work. Chris lies next to me tossing and turning too. I just remember that I don't need to worry - I'll be put to sleep tomorrow anyway so tiredness isn't an issue!

2.00am
Still cant get to sleep. Tomorrow is so huge. What if it all goes wrong? What if I don't wake up?

6.00am
I wake up to my alarm. I feel like I've only just got to sleep. My eyes are heavy. I get dressed and re-check my hospital bag. I think I have everything. I can sense Chris is nervous too.

7.00am 
After de-icing the car we set off. We're even nervous talking to each other on the journey. We make small talk. It's so odd.

7.30am
We arrive at the hospital at and suddenly I feel strangely calm considering what I'm about to go through. There are 3 other ladies in the waiting area also having breast surgery and lymph node biopsies today. Chris and I sit in the waiting area, the Winter Olympics is on the TV.

8.45am
"Leanne Nash" I'm called in to the anesthetist first. She puts name bands on both of my wrists and  runs through the usual questions. I confirm the operation I'm having, we discuss past surgeries and my DVT history. All good, I return to the waiting room.

9.15am
"Leanne Nash" Mr M, my surgeon calls me through. He apologises that he may smell of garlic because he was celebrating Chinese New Year yesterday. I take my top off and he marks me up with his marker pen. The comical arrow pointed to the riddled boob. He asks if I have any questions and we talk about lymphnodes. He says he will try and take the sentinel nodes from the main incision so hopefully I'll just have the one scar.

9.30am
"Leanne Nash"
The nurse calls me in to go through everything again. Check the op im having etc. She measures my legs for the DVT stockings. I'm second in to theatre so it will be later on this morning that I'm called. She passes me my tights and down but says I don't need to change just yet so i keep hold of them.

10.30am
"Right ladies. Those you that are having the dye injections for sentinel node biopsy, would you like to follow me?"
I panic because I'm not changed in to my gown. The nurse tells me not to worry but to take everything with me in case I need to go straight to theatre from the radiology department. There are 4 ladies, each with their husbands in tow. We are told to follow two young boys aged about 16 or 17 down to the clinic. They speed off. It takes at least 5 minutes to walk, and we struggle to keep up with them which they clearly find hilarious. I hear them laugh and say they nearly lost all of us. As we walk past the Cafe I can smell bacon and my mouth waters, I'm so hungry!

We are taken to a small waiting room. One by one we are called in. I am the last. Since Chris cant come in I send him off to the cafe. No reason why he should starve himself too.

I go in and the nurse asks my name and date of birth but my brain doesn't work and I forget what shes asked. We have a good laugh.They explain that the needle needs to go in to the cancer tumour location. I explain that I have DCIS but I've already had two surgeries to remove it. We decide that injecting in to the area closest to my scar will work best.

What is a Sentinel Node Biopsy?

To explain, when you have cancer, the sentinel lymph node is the node that the cancer would get to first if it was trying to spread. Examining cells in these first nodes can give your doctor a lot of information about the state of your cancer. During the sentinel lymph node biopsy, they inject dye in to the cancer site. The dye then moves from to the injection site in to the lymphatic system. Blue nodes, or "hot" nodes (nodes with high radioactive counts), are where the dye hits first, these are called the sentinel nodes and all hot nodes are removed and sent to histology for testing.

The injection doesn't take long and then I'm sent back to the waiting area. One of the ladies already in her gown is told she will be going straight to theatre. We are wait for someone to come and take us backup to the ward when I hear the phone ring in the office. I hear my name repeated back and the word theatre. Oh god, I must be going straight to theatre too. I panic! I haven't even got my gown on, it takes about 20 minutes for me to get the DVT sock on usually and Chris is in the cafe!!

I sit there for a few minutes expecting someone to come and let me know but no one does so I knock on the office door. "Excuse me, did I just hear that I'm going to theatre. Do I need to get my gown on?" "Oh yes, sorry love."

The lady that did my injection overhears, she shows me to the changing room and volunteers to go and collect Chris from the Cafe.

I rush as I get ready but feel calm again when I hear Chris' voice outside. I stuff my clothes and boots in to my bag and don my dressing gown and slippers.

A man from theatre arrives with a wheel chair and we head off. The hospital is huge. We go through what feels like hundreds of corridors and up in a lift. Chris and I kiss and say goodbye and I'm wheeled in to the theatre recovery room. Apparently there is a lot of work going on in the hospital so the waiting and recovery rooms are combined fora few weeks.

11.30
I'm checked in at the desk. 2 theatre staff check my name, date of birth and NHS number against my wrist band. There are a number of people in the room, some of which are recovering from surgery and some (like me) waiting to go down. Each person has a member of the medical team assigned to them. Mine is the guy that wheeled me here. I recognise another as the anaesthetist from my last surgery.

12.00
I'm still waiting, making small talk with my new friend when a  new lady is brought back from theatre. The curtain next to me is drawn and i can here the team trying to bring her round. All of a sudden there is a huge commotion. The lady is attempting to get out of bed. They call for assistance, people are running to physically pin this lady down. She is becoming really aggressive shouting at the nurses to get off her and at one point almost pulls her drain out - she's had breast surgery too and I quickly realise that it was one of the other ladies I'd seen up on the ward earlier. After about 20 minutes of constant struggle it becomes apparent that this lady has become aggressive after previous anesthetic before - its on her notes.  I'm on my own, just listening to the poor lady who sounds so scared and the staff trying desperately to calm her down.

12.20
Mr M, my surgeon pops his head around the curtain and lets me know he won't be too long. He takes my notes from the back of the wheelchair that I am still in so he can refresh himself on my journey and diagnosis before he begins.

12.30
The poor lady next door is still fighting so one of the nursing team pops over to reassure me that the lady is ok. Its nothing they have done and it wont be too long now 'til I go down.

12.40
Finally I'm on my way to theatre. Only it appears that I have put my gown on back to front so I have to quickly get half naked in the theatre anesthetic room while everyone looks away. I'm mortified!

Next job is to get the cannula in, I pump my fist to try and assist. Usually I have great veins but since I haven't had a drink for over 12 hours it seems they have shriveled. They get one in but when they try to flush it, it becomes clear that it's not in the right place. They quickly take it out and ask me to pump my first again. As she tries a new place I can feel a lot blood dripping out of the the place shes just tried. The lady realises and asks someone too pass some gauze - there must be blood all over the floor! Soon it's in but it's in a really awkward place at the side of my wrist.

The oxygen mask goes on and the anaesthetic goes in.

SLEEP

15.00 As I start to come around I glance at the clock. I'm told everything went well. Everything feels very numb and I have one drain in place. I'm given a cup of water and I ask for more. I'm so thirsty. I drift back off to sleep.

16.10 I wake up again and ask for more water and more pain killers. I'm really sore. I tell them I'm hungry but they cant give me anything until I'm moved to a ward and at the minute there are no beds.

17.30 I'm still here. Still hungry. They keep me watered but I really need food! People that have come out of theatre after me have already left for the ward. I ask the nurse of they have contacted Chris to let him know I'm ok. She said they usually do that on the ward. I explain he'll be really worried so she goes to get the phone. It won't connect! Typical.

18.00 Still here!! I ask them to try Chris again. This time they leave me with the phone and I get through. Chris sounds so relieved to here my voice. He'd been calling different parts of the hospital and had been really starting to worry. He'd left me over 6 and a half hours ago for an op that should have taken only 2 and he had been thinking the worst.

19.15 At last I hear that I'm moving. I'm the only one left on the recovery ward and I still haven't eaten. Apparently there are no beds on the main ward so I'm going to my own room in the private part of the hospital. Result! Lets hope they have some decent food there because I honestly feel like I'm being tortured. I ask to call Chris again so he can make his way in.

19.30 I arrive. Finally!! They leave me on the theatre bed and wheel me in. I have an en suite room and a TV (although no remote!) I ask them to pass me my mobile so I can call my mum. I tell her I'm ok then buzz for food. They bring me some soup and a sandwich which I devour in minutes. I decided to get up to go to the loo so I pop my drain in my special Drain Dollies drain bag and head in. I'm so glad I have my own room.

20.00 Chris arrives. I'm so relieved to see him. He brings me more food - yay for hospital grapes! The children are at his mum's so I know he cant stay long.

21.30 Chris heads off and I ask for more painkillers. I'm given oramorph but it doesn't agree with me and soon I'm feeling very sickly. I keep drinking water to take the nasty feeling away. My obs are checked and all is well. Although I've slept so much in the recovery are that I'm wide awake.

02:00 After a few toilet trips,more obs and pain killers and a lot of TV I finally turn my light off and head off to sleep.