After my third operation in 18 months, I now have no real breast tissue to speak of. I'm just like Angelina Jolie. Though without the beauty, fame, money and gorgeous husband. Obviously.
I'm not a BRCA mutation carrier like Ange, however based on my age and the fact I have already had breast cancer, the geneticist I saw in 2014 put my lifetime risk of a new breast cancer at 25%. This is twice that of the average women in the general population. Based on this, psychological (the constant at worry of finding new lumps and bumps) and aesthetic reasons, I argued my case for a preventative mastectomy. To be honest, my team are pretty good and I didn't have to argue too much - I think they know me too well now - dog with a bone springs to mind. Or woman with a boob.
My risk of a new breast cancer has now been decreased to about 2% - lower
than the average woman in the general population. However, it
doesn't have any bearing on the one that I have already had. In other
words, I still have as much chance of dying from that one than I did before this operation. Whatever that chance is I don't know -
for once I'm preferring to live in ignorance (for however long that is)
and have chosen not to discuss my prognosis with my team. I know some
people find this a strange way of thinking, but prognoses are based on
often outdated statistics and can have little relevance to individual
situations. I'd rather not scare myself any more than is entirely
necessary!
The operation was delayed until this year, rather than being done at the same time as my first mastectomy because the priority then was to deal with the cancer that was there. My team understandably wanted to avoid risking extra surgery which could cause delays to my treatment.
I managed to enjoy an amazing six weeks travelling in Vietnam and Cambodia at the beginning of this year - which I'm going to write about on a separate blog - during which there were no hospital appointments or prodding and poking (well only in a good sense!). It was an incredible feeling to just be 'normal' for a while. To spend time on beaches and sightseeing rather than sat in hospital waiting rooms. The only time I had to get my boobs out was in a bikini. Bliss.
However, my return home was met with another hospital stamped letter informing me that my surgery had been booked for the end of February (leap day to be precise) and that my pre-op assessment was due the next day. Therefore, I dragged my jet lagged arse down to the hospital the day after I got back from my travels to spend over two hours having blood taken from my poor shriveled veins. Yes, I had to spend over two hours at the hospital whilst attempts were made to take blood from my arm, the back of my hand and finally from the inside of my wrist. Needless to say I would have much rather have been sleeping off my jet lag than being repeatedly jabbed with needles.
As well as the quest to get blood from my wizened, chemo-ruined veins, the pre-op also consists of the taking of swabs to check for MRSA, which unfortunately in my case came back positive and led to my surgery being delayed. Here commenced five days of scrubbing with a corrosive pink shower gel and sticking stuff up my nose to try and rid my body of the little bugger. And also days of my head being up my arse and not knowing which way is up, waiting for yet more results. Luckily the re-swabs came back negative and my surgery was confirmed for the 14th of March. It seems so backwards to actually be excited and happy to have it confirmed you're going to be having another bit of your body cut off, but as I've learned, the strangest things are a cause for celebration in the breast cancer world.
Apart from the usual 'what if i don't wake up?' panic and messaging my friends about what I want my funeral to be like, the morning of the operation was pretty uneventful. After the operation was pretty uneventful too, to be honest. Not a great deal of pain and sadly therefore no morphine drip. Dammit.
I even managed to take a selfie form my hospital bed.
Ah, the calm before the storm. What followed was an entire night deprived of sleep (ironically hospitals are not the most conducive to restful sleep) - followed by a complete and utter meltdown the next morning, culminating in a very sympathetic Breast Care Nurse finding me in total and utter hysterics - I'm talking gulping-not-able-to-speak-or-breathe-properly crying - and hugging me until I managed to calm down. I think the complete lack of sleep played a huge factor, but it was almost as if the complete reality of what I had chosen to do to my body had sunk in all at once. However, a talk with the BCN, a move to a private room and good ol' temazepam helped the rest of the my hospital stay pass a little more uneventfully.
Because I only (!) had a mastectomy this time and not a node clearance as well this time, I only had two drains instead of three, one of which was removed before I left the hospital.
This photo was taken just before the nurse removed one of the drains - the important things first obviously!
I've had the same kind of reconstruction as last time. A tissue expander which will be filled gradually over a period of weeks. The aim will be the replace both tissue expanders with permanent implants a few months down the line.You might just be able to see that the implant hasn't yet been filled. It currently resembles a party balloon that's still hanging on the wall two weeks later because no one can be bothered to take it down. It means I'm currently very lopsided and hibernating a lot of the time because most of my clothes look terrible and I can't currently wear my Spanx because the drain site hasn't healed. If I do go anywhere (usually to the hospital) I'm dressed like an aging Goth in baggy black clothes that hide my boobs (or lack of) and my menopause belly.
Because the veins in one arm have been annihilated by chemo, and the other arm is a no go because of my node clearance and risk of lymphoedema, I also had to have a cannula in my foot. This was thankfully was put in when I was under anesthetic and completely none the wiser:
They even cut a little hole in my sexy anti-embolism stockings to accommodate it.
The many attempts at cannulising me - both failed and successful - left me with some cracking bruises which haven't yet faded entirely three weeks later. Here they are in their glory when I returned home from hospital:
I think the foot bruise definitely wins the prize.
Like last year, I came home from hospital with one drain, but unlike last year had a number of problems with it. The first came when I got up in the middle of the night to go to the bathroom and noticed that the pipe had become detached from the drain. Hence a 2 o'clock on a Sunday morning trip to A&E clutching a plastic bag full of drain bottle and drain bottle juice. I have to say that the staff at Birmingham City A&E were brilliant and I was in and out with a brand new drain bottle within an hour. The same can't be said for Rotherham A&E where I ended up on Good Friday evening after I noticed the vacuum had gone on the drain bottle whilst staying at my mum's. Basically, the drain bottle has to have a working vacuum on it to ensure that the fluid is drained from the operation site and in to the bottle.
After waiting for almost two hours without even being triaged, with a broken drain and fluid leaking out of the drain site and through my clothes, we were told there was nothing they could do at that hospital to help me and basically we should just sod off elsewhere. By this point I was crying very frustrated tears, so when a bystander chipped in with 'she needs t'calm 'er sen down' - he felt the force of my post-surgery-fed-up-with-cancer-and- hospitals-and-everything-else wrath.
Over six hours later and a trip to Northern General Hospital in Sheffield, I was sorted out by a very thorough surgeon who basically glued the drain tube to my body and taped it up to create a seal to stop the vacuum on the bottle from failing again.
Needless to say, I was not sorry to see the drain go when it removed (after much picking off of glue and tape) by my surgeon on Wednesday. Unfortunately, ever since then I've had quite a lot of fluid coming out of my drain site, meaning I'm constantly having to patch it up with dressings to stop it soaking through my clothes. Yeauch. Warning - gross photo of a dressing coming up:
Despite this, the rest of it seems to be healing OK (touch wood). Physically, I'm sleeping A LOT and still manage to feel completely knackered. My chemo brain seems to have inexplicably got worse since my op - the most recent example being me leaving my credit card in the chip and pin machine in the supermarket the other day. And just to say - if you message me and I don't message back it's nothing personal (well depends who you are..;-)) - likelihood is I've just forgotten to reply - so please don't hold it against me! I really do appreciate people checking in and asking how I am.
Mentally, things perhaps aren't healing so well. I guess the assumption might be that because this time around it's something I've chosen to do, rather than the choice being forced upon me, it's easier. It really isn't. When there is cancer there, it's an easy choice to make - you just want the breast gone. When you've made a choice to remove what is at present healthy tissue with nothing wrong with it, the sense of loss is greater and more acute. I've spent a long time shedding tears and doubting myself and my decision. These feelings are even more pronounced when I look in the mirror and see what is left of my body. I can't tell you how much I wish that I had not had to go through this. But believe me, if I felt there was any other option that I could live comfortably with I would not have undergone this surgery. No one would put themselves through more pain, scarring, lack of sensation, risk of infection and countless hospital visits if they felt that there was another feasible option.
It's knocked my already fragile self confidence back down into the minus numbers. It's another loss of something that makes me female. Along with the fact I have to take medication that suppresses the production of the very hormone that makes us women, just to try and stay alive. I very regularly envy women with 'normal' reproductive systems - i.e. ones that aren't trying to kill them!
Guilt is a very prevalent emotion right now too. I feel guilty for moaning about when lot when there are women who didn't even make it this far. I know I'm luckier than many of the women I've met over the last 18 months. I hate that I just can't be happy and thankful right now. Maybe those feelings will take over the negative ones the more time goes on.
I feel guilty for continuing to be a burden to my family. I feel guilty for still not having much to give to my friends, for not having 'got over this' yet - for still being the cancer bore.
I feel guilty for slobbing around and sleeping a lot and basically not contributing anything useful to society.
All this emotional turmoil and complete lack of confidence has lead to me being some what of a hermit at the moment. I'm more or less hibernating right now - like a tortoise. I definitely possess the energy and get up and go of one right now that's for sure! Someone wake me up when it's all over will you?
After a brief foray back in to the ridiculous world of online dating, I felt that I wanted to write a post with a different flavour than my usual ones. It is quite possible I have had the worst luck over the last nine months with internet dating. I seem to be a total pillock magnet (Me? Bitter? Never!). Also, as a woman living with a life threatening disease which has irreversibly altered my body, I get to experience pillocks of the extra special variety.
Oh yes, the right man may come along one day and change my mind - blah, blah -but until then I reserve the right to be completely sceptical abut online dating.
I'm not the only one. The following post has been compiled using not just my own opinions, but those of many other single ladies I've spoken to.
Don't get annoyed, lads. Just a bit of friendly advice. After all, it's all about the bantz, innit? YOLO. Don't hate the player, hate the game. Or something.
Top Ten Tinder No No's (for men)
1.
Kids
Including multiple pictures of
your children on your Tinder profile is a massive no-no. You may be proud of
the fact you have managed to pass your genes on to the future generation,
however this is a dating site, not a photo shoot for your family Christmas
card.
2. Men with fish
We're not sure when or how the
current epidemic of men holding fish photos started, but our desire to go out on a
date with you will not be affected in the slightest by your ability to catch something for our
dinner (even though you’ve probably nipped to Tesco and got your mate to take a
photo in front of your garden pond). Give us a good old chippy any day of the
week.
3. Multiple drunk / fancy dress
photos
Let’s face it -anyone who is
anyone likes a good old dress up once in a while. And a beer or two. But if
your entire dating profile consists of you in varying themes of fancy dress
outfits and / or repeated photos of you looking slightly worse for wear, this
doesn't make you look like a 'fun guy'. It makes you look like a bit of a fool
who hasn't quite grown up yet. We're looking for a date, not a babysitting job.
4. Men with cars/bikes
Again, you may be proud of your
machine, but for the majority of women, the
type of car you drive will have no bearing on whether we want to date you or
not. Unless, or course, you are Marty McFly.
5. Photos with loads of mates
Ah, the ‘here is me with twenty
mates’ photo. When deciding whether to swipe right or not, knowing which one of
the llikely lads you actually are helps. We’re after a date, not playing a Spot
the Ball competition.
6.Gym mirror selfies / topless
selfies
It’s very laudable that you
work out and how sweet you are to show us your gainz, but the cloud of
testosterone wafting from these photos makes our eyes hurt. Try leaving a
little to the imagination, lads. If we want tickets to the gun show, we’ll ask
for them.
7. Photos with women
Whether it’s your sister/best
mate/ mum or auntie’s sister’s boss, photos of you with other women on your
dating profile is a no. We don’t want to be wondering who that woman is you
have your arm draped around before we
go on a date with you. Save that for when we’ve got access to your Facebook
profile.
Oh – and you might think that
photos of yourself surrounded by PR models makes you look desirable,
but really, wearing women like accessories in your pictures actually makes you
look like a bit of a creep.
8. Wedding photos
We’re not sure why men include
photos of themselves on their wedding day on their Tinder profile. It smacks of
one of three possible scenarios – 1. You are desperate to show that one day,
once upon a time, someone wanted you. 2. You and your wife are looking for a
third wheel to spice up your sex life or 3. Your mates have put you on Tinder
for a laugh. Whichever one is true, for the majority of women it’s going to
guarantee you a big swipe
left.
9. Quotations / memes
You may think that filling your
profile with photos of inspirational quotes instead of actual photos of yourself will make us believe you is all
deep and shiz innit, but mainly it just makes you look like you have something
to hide.
And the sexist jokes and
comments about how mean women are because they never go for the ‘nice guy’?
They make us want to stay in and pull our leg hairs out individually with a pair
of tweezers, rather than go on a date with you.
10. No photos
Next time you want to have a
productive conversation with someone, try sitting on the other side of a door
whilst doing it. Don’t think that would work that well? Same goes in an online
situation. If we have no idea who we are talking to, we are not going to feel
comfortable engaging in a conversation with you. It also smacks of someone who
has something to hide – normally or wife or girlfriend. So, unless you actually
look like a white silhouette of Tin Tin or you’re the invisible man, having a
photo on your profile is a definite advantage when trying to get women to speak
to you.
On Friday I attended my
fourth Christmas party of the season- my office Christmas party. Last year I
attended this do feeling incredibly tired and ill and with a big fat steroid
face, as it was four days after my last chemotherapy treatment. Needless to say,
this year I felt a whole lot better, not least because the year previously I'd
been wondering whether I would actually be alive to see this Christmas.
However, one of the main reasons for my good mood was my secret Santa gift. As
well as a gorgeous silk scarf, I also received what it possibly the nicest and
sweetest letter I have ever had. I still don't know who it was from, but I know
the person who wrote it reads my blog because of some of the things they
referenced, so I'm hoping that they see this post.
To give you an understanding of what was written in the letter, I've copied one
of the paragraphs below:
'Santa respects how very brave you are but realises this can be tiring. Just
remember you don't always have to be brave your friends will understand and be
there to give you a hand or a shoulder to cry on when you need it. Santa can
reassure you that you are not a shadow of the person you used to be. You are
still beautiful, loveable and definitely not fat. So don't hate your reflection
and as to the men who treat you like a leper they are fools and not worthy of
you.'
To my Secret Santa -
I just want to tell how much your words mean to me. I know I can come across as
brash and loud sometimes, but inside I struggle. I hate the way I look right
now and the limitations that cancer has placed on my life and it's very easy
for me to sink in to depression. Every now and again I just need kind words and
reassurance, which is exactly what you have given me. It's impossible to put in
to words how important it is to me to hear comments like yours and what a
difference it makes. So I just want to say thank you from the bottom of my
heart. You made my day xxxx
I'm fed up of being in pain.
I'm sick of hot flushes and being menopausal at 33 years old.
I'm tired of having a deformed body and hating my reflection in the mirror.
I'm sick of cancer taking my friends.
I've had enough of side effects.
I'm tired of aches and pains.
I'm sick of anxiety and worry.
I'm fed up of my friends getting bad news after bad news.
I'm tired of men treating me like a leper.
I'm sick of feeling unloveable.
I'm fed up of feeling fat and ugly.
I'm sick of being told ' well does that really matter in the grand scheme of things?'
I'm tired of brain fog and memory issues.
I'm tired of being tired.
I've had enough of feeling lonely.
I'm sick of people's assumptions that 'it's all over now'.
I'm tired of being brave.
I've had enough of being a shadow of the person I used to be.
A couple of weeks ago I went on holiday by myself. It was something that I deliberated over and took me slightly out of my comfort zone. I've travelled in Thailand alone but travelling is a different animal. There are lots of people navigating places like South East Asia alone and inevitably you end up meeting like minded people to hang out with during your stay.
Most of my friends are married, have long terms boyfriends or children. Or all three. Therefore a holiday companion was not forthcoming. It was either a case of go it alone or not go at all. After the last year I was completely desperate for a break. I'm single and childless and I was slightly worried that going on holiday alone would be the start of the slippery slope towards eternal shelf life and owning twenty cats. However, I bit the proverbial bullet and booked a week in Santorini, a Greek island I've wanted to visit for a good few years.
I stayed in a little village by the beach called Kamari which reminded me of one of the Thai islands. Kamari has a long stretch of black sand and is separated from the neighbouring village by a huge expanse of volcanic rock.
If you ever visit Kamari make sure you have flip flops for the beach. Black sand and the Greek sunshine can make for very sore tootsies!
I spent most of my evenings in Santorini eating fresh seafood and greek salad, accompanied by copious amounts of white wine with the odd cocktail thrown in. However, I managed to get a couple of early nights and got up at 6.30am the next morning to get a three mile run in before the sun came up.
Running along the seafront with that view certainly beats pounding the pavements of the Hagley Road in Birmingham. It was totally idyllic and I just felt calm, relaxed and happy for the first time in a long while.
The picture postcard blue and white views of Santorini that pop up on Google aren't of the beach areas of the island, but of the towns Oia and Fira which are inland. I say inland, but the whole island is very small and inland just means about a couple of kilometres from the beach rather than being right on it.
Halfway through the week I spent one night in Fira and booked a table at Palia Kameni cocktail bar a few weeks before I left England. The bar is set in the side of the caldera and you can sit with an incredible cocktail and watch the sun go down.
Pretty special right?
It took quite a hike up a steep hill to reach the bar but the effort was definitely worth it!
Fira is a lot different from the sleepy town of Kamari. It's busy and bustling with a huge array of restaurants and bars. It's only a 10-15 mile taxi ride to Fira from Kamari or you can jump on a bus. I decided to stay there for an evening to experience a different bit of the island but also not to have to worry about getting a taxi home late at night.
Regarding the holiday itself. Of course I attracted some attention. I'm a woman in my early 30's travelling alone on an island traditionally full of romance and love. But at no point did I feel uncomfortable or unsafe. I was well looked after by the staff at the hotel I stayed in and at the restaurants I visited. I researched the location of my hotel online before I left to make sure I was booking to somewhere close to everything so I wouldn't be wandering around alone late at night.
I never felt lonely or isolated, even when surrounded by lots of couples staring lovingly in to each others eyes. Just relaxed and content and slightly smug that I had the freedom to what I liked, when I liked. The post cancer me has become a lot more comfortable and accepting of my own company and spending time alone no longer causes the anxiety that it once did.
My advice to anyone considering going on holiday alone is to go ahead and book it. It could be one of the best decisions you ever make.
I just wanted to write a post updating on my progress regarding my fundraising challenge.
As some of you may have read in my last post, I set myself a challenge of running 150 miles between the beginning of August and the 18th of October, including the Birmingham Half Marathon to raise money for Breast Cancer Care and Breast Cancer Now.
I am very pleased to say that so far I have completed just over 132 miles and there is still just under four weeks to go till the half marathon! I'm hoping to smash the 150 target this week and I'm aiming to do at least 200 miles altogether. Fingers crossed for no injuries please!!
I'm not going to lie and say its been easy because it hasn't. The chemotherapy and the medication I take to suppress my body's oestrogen production means that I get a whole heap more muscle and joint aches than I used to. A lot of physical exertion can mean that in the subsequent days I find it difficult to get out of bed. And I'm definitely a lot slower than I used to be.
But over the last couple of months there have been achievements that I am proud of too. The evening before I went on holiday a couple of weeks ago I actually completed just over 13 miles - a half marathon:
Not too shabby a time either!
I didn't set of with the intention of doing that many miles, I just kind of had a bit of a Forest Gump moment!
On holiday I also managed to resist having too many frozen daiquiris on a couple of evenings and dragged myself out of bed at 6.30 am the next day for a couple of 3 mile runs down the beach front at Kamari in Santorini:
Beats Birmingham canal I think you'll agree!!
You can donate to my fundraising efforts here - uk.virginmoneygiving.com/rebeccas150milechallenge
You can also follow my progress here - www.facebook.com/rebeccas150miles or on Twitter - @rebeccas150mile
