The post op effects

On Thursday, I was ‘released’ from hospital. I’d been in for 4 days and by then I felt very anxious to get home. Like I would walk in the door and magically start to feel better… That didn’t happen. What did happen, was a big dose of the reality of what I’ve just gone through. In my last post, I mentioned ‘the operation’ but didn’t go into details of what that entailed.
I had a prophylactic (risk reducing) mastectomy with immediate reconstruction. The mastectomy was done horizontally through the middle of my breast. As my cancer was ductal in origin, it was decided that the surgery would remove my nipple completely (this can be reconstructed at a later date if I choose to) as this would be the highest risk area for a new primary tumour. Once all of the breast tissue was removed, an implant was placed in under the chest muscle and then stitched into place using a synthetic stratice. A drain was inserted under the wound which allows excess fluid, tissue and blood to be pulled away from the wound site by a small vacuum to decrease the chance of any post op complications.

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A diagram of how the implant and starting work

This is the same surgery I had on my ‘bad’ side just after diagnosis but unfortunately, the chemo meant my ability to heal was seriously compromised and, after several attempts to save it, my implant had to be removed. Couple this with the damage caused by radiotherapy and you’re left with one seriously knackered boob. The next option for me is to have this reconstructed using donor skin, tissue and blood vessels from another part of my body, most likely my back. This is the next conversation I’ll be having with my surgeon once he’s happy I’m healing from this operation. I might give us both a bit of a rest for a few weeks before I start hounding him to put another date in his diary though.
So, physically that is what I’ve been through. Mentally, it’s been even tougher. On the days running up to the operation, I suffered from a couple of extremely frightening panic attacks. The fear and uncertainty of more surgery as well as the flood of bad memories was consuming. I try to be a generally positive person but the truth is, this is an awful thing to go through. It’s extremely painful and limiting and, having been through it previously, no amount of being told “you’ll be fine” did anything to lessen that fear. Actually, it just kind of annoyed me. I understand it’s in our nature to try to make people feel better, but sometimes it’s more helpful to just acknowledge that it’s a shit situation and offer to listen. If in doubt, ask. I’ll never be offended by someone showing an interest. If that interest is followed up with cake: even better!
The recovery from this operation is likely to take several months. At the moment, I’m taking lots of painkillers and resting as much as possible. The physical trauma means that my body is working extra hard to mend itself so I’m very tired and sleeping lots. This is good because I’m not very good at doing nothing. I’ve already pushed myself a bit further than I really should and been told off for it by a few friends and by my infuriatingly always bloody right, mum.
Mum, I’m listening to you. If you need me, I’ll be on my couch, doing NOTHING. Well, maybe eating that cake I mentioned.

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A cake made by my lovely friend, Leigh

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The Mutants

During radiotherapy, I was asked to go and have a chat with the genetic counselling department at the Western General in Edinburgh. I had heard of other ladies going but expected they would tell me I wasn’t eligible for testing due to my limited family history of cancer. I had found out a few months earlier that my Mum’s cousin (on my Grandfather’s side) had been treated for breast cancer in her early 30’s but that was all I knew of.
However, due to my age, the severity of my diagnosis and her age at diagnosis, I was offered the test.

There are a few known genetic alterations that can seriously impact the risk of developing breast and ovarian cancer. The most well known, at the moment, are the BRCA1 and BRCA2 gene alterations. You’re probably thinking ‘is that what Angelina Jolie has?’  I’m assuming this because I’ve been asked this question at least 200 times. Yes it is. I’m glad she has used her BRCA1 diagnosis to raise awareness but it’s important to note that she hasn’t had cancer. She has the genetic mutation and has used this knowledge to allow her the opportunity to take preventative measures.

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I was called back in around 3 weeks later and told that I had tested positive for the BRCA2 gene alteration. I’ll be honest, it was another blow to find this out but I was almost relieved to find out my cancer had developed, not because of something I’d done wrong, but because of my dodgy, inherited genes.

As soon as I received the news, my Mum, Sister and Gran were all invited to be tested. My Gran tested negative but unfortunately Mum and Irana tested positive. Our family are really being pushed to their limits with this cancer crap!
It was a really tough time for us all. I felt guilty (despite knowing I couldn’t have done anything to change it). Not only was it directly affecting my life, it had now weasled it’s way into the lives of the people I love most.

Having the BRCA2 diagnosis has the following main implications:

1. Women who have the gene change have up to an 85% chance of developing breast cancer in their lifetime.

2. They also have up to a 30% chance of developing ovarian cancer.

The diagram below breaks down risk by age too.

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I think this really brings home the amplified risk having this gene change, particularly with regards to breast cancer.

Having this knowledge is frightening. It’s like knowing you’re probably going to get hit by a car but expected to continue crossing the road.
The bonus of knowing this, however, is that you are now in a position to take measures to reduce your risk.

Having a bilateral prophylactic mastectomy has been shown to reduce the risk of breast cancer by at least 95 percent in women who have the BRCA1/2 mutation

Having a bilateral prophylactic salpingo-oopherectomy has been shown to reduce the risk of ovarian cancer by approximately 90 percent and the risk of breast cancer by approximately 50 percent in women at very high risk of developing these diseases.

Not bad odds!

So, another mastectomy is in my immediate future, followed by a reconstruction of my ‘bad’ side. The oopherectomy isn’t offered to women under the age of 35 so I’ll need to wait another year for that. My mum and sister have already had their oopherectomy (and are both healing nicely)
Irana is having her double mastectomy with immediate reconstruction soon.

I personally think that the risk of developing cancer vs the risk reduction from surgery makes it a no brainer. I won’t lie, having the surgery is painful and the healing time is long, but this is a decision that could potentially extend my life to that of a ‘normal’ person. I want that. I want it for me, for Steph, for my family and friends.
If that means being a menopausal, hot flushing, scarred, silicon boobed crazy lady, that’s the price I’ll pay.

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The visit


My Dad lives in Atlanta and I can’t imagine how difficult it was for him to be so far away when his youngest daughter was going through such an ordeal.

He wanted to come over as soon as I was diagnosed but I convinced him to wait until after my surgery so that I could spend time with him in my own home rather than in the hospital surrounded by all those sick people…

My limited mobility after surgery turned me into a clingy child. I wanted my Mum, Steph or my sister to be with me constantly and I would secretly cry if they had to go out. I’ve always been a very independant person and enjoy my own company but during this, I was anxious and scared and didn’t want to be alone for a second.

Seeing my Dad was wonderful. Knowing he was nearby was so comforting.

We have a lot in common, Dad and I. We love nothing more than a good camping trip with a bit of kayaking, walking, whisky drinking and guitar playing. I wasn’t able to do any of this while he was over and that was grim. I felt really guilty about sleeping on the couch beside him while he watched TV or played guitar. I know he just wanted to be with me but I was already desperate to return to normal. I’ll let you know when that happens!

We did manage a few little walks and got out to eat a few times too. This felt pretty enormous after being in hiding for the past few weeks. I even did a test run of one of my wigs in preparation for chemo starting.

dinner with dad

Dad went home and it was a really emotional goodbye. I can admit now that I was terrified I’d never see him again and tried to hold on to every moment in my mind. Cancer is a great giver of perspective and I can tell you that the most important thing in this world is being loved and loving others in return. A bit Cheesey McCheese but it’s powerfully true.

OK, go and hug someone. Do it, you’ll feel good x

The BIG op

This post is about my mastectomy surgery. Be prepared, there is bed pan chat!

I was told I’d be in hospital from the Monday and all going well I’d be home on Wesnesday afternoon. Obviously, i packed enough for a week!

Now, when I’m anxious, I organise and I buy stuff. Those things give me a sense of control. I was so nervous I packed my little case about 25 times.

Part of the reason I’m writing this, other than to remind me of facts when I inevitably forget them in about 6 months time, is to help guide/prepare/support anyone else in my situation so here is my packing list.

Pyjamas: 3 pairs. Make sure they are at least 1 size too big and button down the front. This will make them much easier to get on and off and allow you easy access for the many many people who will want to see your wound for the next few days. Also, you will have a drain coming from your wound site (sounds worse than it is) and that needs to be accessible too.

Pants: 5 pairs. I don’t know why. I panicked and bought a multi pack from BHS

Slippers

Dressing gown: I was really glad of this as I felt up to having a little wander and freedom from the ward after a few days but not up to getting fully dressed to do it!

Clothes for coming home in: I took jogging bottoms, a vest top and a zip up hoody. All things I could quite easily dress in with limited movement

Bras: the bras I bought were terrible! They advise you to buy unwired bras as they will be more comfortable post surgery. If you can find a bra with no wires in a 38F that offers any kind of comfort or support, then you’re doing better than me. I’ve worn them a total of twice and I look truly mental when I do. All I can do, is pull at it and try to make it sit properly. Within ten seconds it’s managed to tuck itself under my other boob in medieval torture style death grip. I’d have been better off bandaging it down.
Once I was home, I worked out I was better with a wired bra. I pulled the wire out of my op side and some still had support on my other side. I was very swollen and needed one of those dodgy Betterware type bra expanders. If you’re buying a bra specifically for post op, buy it at least 1 back size wider than normal.

Slipper socks: I didn’t need mine as it was roasting in my room but they might have been handy if they kept the place at non ‘depths of hell’ temperature.

Toiletries: All the normal stuff you’d take for a weekend away.
One bit of advice I got from a wonderful friend who, unfortunately, has had far too much hospital experience having been treated for bone cancer, is to take sanitary towels. Something to do with the general anaesthetic… Anyway, I’m glad she told me as it did bring on my period and I managed to save myself from a potentially very embarrassing situation!

Other things that might help: face wipes, dry shampoo, moisturiser, lip balm, nice smelling hand sanitizer (the body shop have a lovely coconut scented one) These will make you feel a bit more human if you get really hot or feel a bit grubby.

Entertainment: This is probably the most important thing on the list as 3 or 4 days in hospital is equal to 2 months in the real world. It can be very lonely and boring so take things that will help alleviate the boredom.

My top recommendation is an audiobook. A lovely customer of mine sent me a memory stick with a Harry Potter audiobook on it which I downloaded onto my phone. This thing is about 20 hours long so no need to worry about getting through it too fast!

After my operation, I woke up at around 5pm. I was extremely drowsy as it had taken almost a 5 hours. I wasn’t up to sitting up to read, or even hold, a book so popping on my headphones and heading off to Hogwarts was amazing. That was a long night as I as being monitored on an hourly basis so having Stephen Fry reading me a story was very welcome company.

I also had my iPad with a bunch of films and music downloaded onto it, some books and magazines. I’d rather have way too much to choose from than way too little!

Snacks: I didnt have much of an appetite but did have the odd fudge or sucky sweetie. I took a bottle of lucozade and diluting juice too. During the op, they put a tube down your throat to help you breathe and when you wake up it can be quite sore and dry for a few days so drinking lots is essential!

So, on the morning of the operation, we arrived at the hospital at 8am. It was a whirlwind of activity for the first hour or so. I met the nurses, the aneasthatist, the surgeon, the physio. I had bloods taken, temperature, blood pressure and pulse. The surgeon drew a huge downward facing arrow on my left collarbone to make sure he got the right side… That was reassuring. He then drew a load of lines all over my boob, had a conversation with me (directed at the boob) and then we were left to wait… and wait. At just before 11, the nurse came to get me. I changed into my fetching gown and my dressing gown and walked to the theatre. I said goodbye to Steph in the hallway. The fear well and truly set in at that point but there was no going back now. I had my 25th cry of the day. I don’t know how I didn’t dehydrate and wither away in those first few weeks.

I walked through the double doors and into the unknown.

Getting set up for this operation was a little different to the egg retrieval one. As it was such a long op, they had to wrestle me into some fetching compression socks to avoid any blood clots. There were 5 people in the pre op room and they were all wonderful to me. Lady GaGa was playing on the stereo and it was such a buzzy, positive atmosphere, it was almost hard to feel afraid with them! My biggest fear is unmanageable pain. They assured me that I would be so full of drugs that there was absolutely no chance of that happening. With that reassurance, I felt ready. Well, as ready as I was ever going to be. They slipped the mask over my face and asked me to take she deep breaths. I felt warm, happy, a little drunk….and I was out.

My next memory is waking up and feeling like my head was full of fog. I was moved back onto my bed and taken back to my room.

It took a while to really feel like I’d woken up and there was a nurse waiting with a glass of water which was heaven as my throat was so sore a dry. I drank a lot over the next few days.

This lead me to my encounter with the bed pan. Oh dear. Not the most dignified thing in the world. I was so drugged up, I couldn’t get out of bed so it was a necessary evil. I had a bit of stage fright and the nurses had to leave me to have a word with my bladder. Peeing whilst lying in bed must be one of the most unnatural things to try to get your body to do. Luckily that was the one and only time I had to use it during my stay.

Steph called the ward to find out if I was awake and he came in to see me at around 7:30. It must have been a huge relief for him. I was fine, I was unconscious, he had to wait all that time! He was visibly relieved to see that i looked pretty normal and by that time, I was sitting up and had had my first (of many) cup of tea. He stayed with me an hour or so but I hardly remember anything we talked about. Just of being glad to see him.

I was being monitored a lot so there wasn’t much rest but I did doze a lot in those first few days.

The next morning I was helped into the shower and got my first look at what was left of my breast. The wound itself was still covered over with dressings and there was a drain coming out of it. It was quite a shock but not as bad as I’d been imagining. Mostly it was just so much smaller than the other side. I’ve always had a big bust so it feels very strange now. My implant was quite heavy though so weight wise it’s about the same.

The next couple of days went along without much excitement. There was a bit of a panic moment when my drain got blocked and I started to swell like violet from charlie and the chocolate factory. The surgeon was called to come and have a look and he recognised the problem straight away. I had a new drain fitted and started to feel better straight away. Unfortunately this resulted in spending an extra day there so they could keep monitoring me.

The only other part of my hospital stay worth noting was the fake boob and all the tears.

Marlene, my breast care nurse came in to fit me for my temporary ‘softie’, a boob shaped cushion to pop in your bra to balance out both sides. She asked me if I’d really looked at myself yet. I said I’d seen my wound while I was in the shower. She asked me to stand and look in the mirror and really have a good look. The reality of how much of a physical change id gone through started to crush me. She asked me to put a bra on (the first time since my op) and I realised how massively ‘missing’ I felt. She then showed me how to place the softie in my bra to achieve a bit of a balance. All I could see was the gap between my wound and the cup of the bra and how much was gone. I cried. A lot. I cried so much, a nurse came and closed the door to the bathroom and the door to my room to try to muffle the sound from the the main corridor. Being the type of person who cares massively about what people think, this public display of emotion is something I would rarely show. I felt as though all my strength and courage had evaporated and in that moment, I knew my life had changed. Not just because of the physical difference but that I, regardless of the outcome, had come face to face with my own mortality. The weeks of tests, facts, appointments and procedures had pushed me too far. Marlene watched me patiently and told me “that was going to happen at some point”. She left me to have some time to myself. One of the nurses came in a few minutes later and without saying a word, hugged me. I cried again and clung onto her. I can’t remember her name but I’ll never forget the compassion she showed me. I needed that hug as much as I needed the painkillers she came in to give me.

Luckily, it got better from there. I let go of a lot of mounted up fear and anxiety in that hour or so and all I felt from then was tiredness and a burning desire to go home!

And so, after 4 days, home I went!

Our timing for the surgery coincided with us getting new windows and doors fitted in our house and due to the dirt and dust, I went to stay with my mum for a few days to allow Steph time to get the duster out. It was lovely and peaceful there and I got spoiled rotten.

After 2 nights, I finally got to go to my own house which was beautifully clean and tidy. It was so nice to be back. I got to spend a few days relaxing and healing and sleeping a lot!