Reaper

Nearly 23 months ago I was diagnosed with breast cancer. 18 months ago I finished chemo. 17 months ago I had the big surgery to remove the remaining cancer and my lymph nodes. 14 months ago I finished radiotherapy, marking the end of active cancer treatment.

Since the end of that active cancer treatment I have remained under the care of all 3 of Leicester's hospitals, with more appointments than I can remember or count. I had a second surgery 11 months ago (mastectomy and reconstruction on my "good" side) to reduce my risk of getting breast cancer again. A third surgery 7 months ago to exchange the temporary implants I had on both sides for permanent ones. And a fourth surgery 3 months ago for nipple reconstruction.

I've spent the last 14 months on Tamoxifen - a tablet I take each night containing a drug that blocks estrogen - to reduce the risk of my cancer returning. I'm pretty much in the menopause as a result. Following a number of appointments with Genetics and Gynaecology over the last few months, I am now on a waiting list to have a hysterectomy later this year - to reduce my risk of ovarian cancer.

Despite all this, it's a long, long time since anyone officially discussed my cancer with me.

The last time I had a scan to check for cancer spread around my body was a CT in October 2014. The last time I had any kind of scan was an ultrasound of my tumour (or lack of, to be more precise) in December 2014 after my last chemo. And the last time my cancer was really discussed was at my sign off towards the end of radiotherapy last year. It was a 10 minute appointment where the oncologist gave me my first Tamoxifen prescription, told me I'd be taking it for 10 years, and basically wished me well.

That now feels like it happened to a different person and my 2016 couldn't be more different to my 2014 and 2015.

I am working full time again, project managing my organisation's biggest project, as I should be. Work is generally my biggest and only stress these days which on the one hand is not good but on the other hand is so nice and normal.

My hair has grown back and my next goal is a short ombre bob like Alexa Chung had. I'm now obsessing more over colour than length which for anyone who has lost their hair through chemo will appreciate is a major change for the better.

Also, I, erm, fell in love 🙊🙈. According to my best friends I have become a fluffy, gooey twat, which is a bit embarrassing and I probably need to pull myself together, but I am insanely happy and a big part of it is him and all the fun we are having. I never expected that post-cancer - and everything that comes with it - that someone would love me. I was expecting to end up a Crazy Old Dog Lady. But I've been proven wrong. (Take note, young, single women with cancer.)

My friends are amazing and now I really feel like I am just back to being just one of the gang, rather than The Poor Friend With Cancer. I still take every opportunity to go out and enjoy myself. Since cancer I've not actually completed a single box set, or a single book. I can't sit still and quiet for long enough. I want to go out and see people and get drunk and be silly. I want to go to places I've never been before, and do things I've never done before. I'm ticking things off the Bucket List but it doesn't feel at all like a Bucket List any more. It's more like an "I Want To Try Everything Because I Don't Want To Miss Out" list.

So you can maybe imagine my "dismay" * when I remembered I have to go for my first ever "check up" at Oncology next week. I have to go back to the place where I went for chemo. The waiting area is the most oppressive and depressing place on the face of the earth. I'll be sitting and sweating there for too long, because inevitably the appointments will be running at least an hour behind. I'll be examined and asked a string of questions to try and determine how worried they should be on a scale of "Nyehhhh Go Home And Try And Forget About It For Another Year Unless You Get Literally Any Symptom Of Anything For More Than Ten Days In Which Case You Need To Let Us Know Immediately" through to "I'm referring you for a Bone scan/CT scan/Biopsy" (aka "Soz, I'd Put Money On You're Going To Die").

* "Dismay" doesn't really cover it. I feel sick! That cancer bullshit happened to a different person. I'm a different person now and it's not fair that I have to go back in to that world where I don't belong any more. Can they even make you go? What happens if you refuse to go? I'm tempted to find out. I've got the day off work next Wednesday and better things to do than sit in Oncology Hell. 

Anyway... You know I like song lyrics. Well, I'll end with some from Sia - "Reaper". The song I will have on repeat for the next week.

Don't come for me today
I'm feeling good, let me savour it
Don't come for me today
I'm feeling good, and I remember when

You came to take me away
So close I was to heaven's gates
But, no, baby, no, baby, not today
You tried to track me down
You followed me like the darkest cloud
But, no, baby, no, baby, not today
Oh Reaper

So come back when I'm good and old
I got drinks to drink, a man to hold
I got good things to do with my life
I wanna dance in the open breeze
Feel the wind in my hair, hear the ocean sing
I got good things to feel in my life

Don't come for me today
I'm feeling good, let me savour it

TTFN

Writing this one feels a hell of a lot like tempting fate, and I reserve the right to change my mind on any of this at any time if I need but, I want to move on now and to do that I need to offload some baggage...

 

First of all I owe some apologies.

 

Sorry to everyone who I have been terrible at keeping in touch with. I am consistently shit at replying to messages and emails. I regularly have good intentions of taking a day out to write back and call back everyone but I fail to get it done every time. No excuses really beyond being a bit tired, a bit forgetful, and often these days just not often being in the mood to talk or think about anything much. During cancer treatment, writing and talking got me through but now it's becoming the last thing I want to do. I'm really sorry for being so rubbish, especially to all the people who regularly get in touch with me even when they hear nothing back.


Sorry in particular to my friend Kayla who has been working her arse off producing a documentary called Vincible about young adult cancer. I've been no help whatsoever. And another sorry in particular to Elliot who has been working his arse off setting up a charity in honour of my friend Rosie who died last year. I've been no help whatsoever.


Another sorry in particular to my friend Danielle who died a few weeks ago. I wanted to put in writing on this blog all about how amazing Danielle was. But I've not been able to face sitting down and writing another one of those posts. Maybe one day I will, but for now, just this: The Crazy Ones by Paloma Faith.


I'm also sorry to the people who have sent in blog posts for the Young Women's Breast Cancer Blog and had to wait ages for me to upload them.


Generally a big, massive sorry to everyone!


Getting cancer turned my life upside down, and at times it broke me. But I am lucky enough to be here now and I will never take it for granted. I'm 1 hair cut, 2 nipple tattoos, a lipofill, and a few months running and dieting away from being finished with fixing up (as best as will be possible) the mess that breast cancer treatment made of my body. The events of the last 19 months have probably changed me forever but I don't want them to be part of my day to day life any more. New me just needs to get settled in "new normal" life.


I'm going to put this blog to bed for a while, also the Young Women's Breast Cancer Blog. I'm leaving most of the online breast cancer groups I've been part of. I'll be unfollowing all the cancer accounts on Twitter and pages on Facebook. I'm not doing any more media stuff either hahahaha (soz Anne Robinson, soz!).


When I'm not working or sleeping, all I want to be doing is having fun with my amazing friends and boyfriend and dog. (BTW you should all expect me to be taking lots of photos. I need to replace all the ones around my house of me in that fucking wig.)




Lots of love, sorry again, and TTFN xx

Potato

My favourite account that I follow on Instagram is health and fitness guru @deliciouslystella....

 

 

 

Haha!

Anyway, I've been reading people's statuses on Facebook today. Everyone is being very sentimental and deep this New Year's Eve and there are some very admirable new year resolutions being made by my friends. Well done and good luck with that!

I thought about it and to be honest I'm pretty happy with my attitude, perspective and priorities in life. There's only one thing about me that I want to change in 2016, and that's my body, which has been completely trashed over the last 18 months - partly from all the chemo, radiotherapy, surgeries, and various drugs, and partly from me being wholeheartedly dedicated to living the Deliciously Stella way in 2015.

This could not be more true:

So, my resolutions are a combination of obvious/bog standard:
1. Eat healthily.
2. Exercise every day.

And a couple that are a little more personal:
3. Stop being lazy and actually use all the various creams/oils etc I have bought (every day) to strengthen nails/moisturise skin/protect hair/fade scars. 
4. And seeing as some things will take time to change and some things can't be changed.... Do not allow hatred of body to get in the way of being happy and having fun.

Starting tomorrow.

Happy new year peeps! xxx

Attitude

I've titled this post "Attitude". What I really wanted to call it was "I'm happy and I love my life and if you don't like it then you can just Fuck. Right. Off." but that seemed a bit too wordy.

Today I've been told I have Stage 4 breast cancer. Stage 4 breast cancer, also known as secondary breast cancer or metastatic breast cancer, is incurable.

Luckily for me the person who dished out this news was just a random person on Twitter, and not any of my actual doctors. This Stage 4 diagnosis that was delivered to me was not based on any scans or tests. It was based purely on a negative attitude.

I sat here and wrote a big, full explanation of what made me write this post and I've just deleted it - because it doesn't really matter. These are the things I want to say that matter:

I had cancer. It was scary. I could have died, but I didn't, and I'm glad I didn't, because I love being alive, and I love my life. Having had cancer I feel this more deeply and strongly than I think I ever could if I had not had cancer. I LOVE BEING ALIVE, AND I LOVE MY LIFE. And I feel that and know that in my heart and in my bones and my gut Every Single Day.

I am happy. I am having fun. I'm excited for my future. Tomorrow, and next week, and next month, and next year. I am plotting and planning all the things I want to do, all the people I want to do them with. I'm going to have fun, and I'm going to try new things, and I'm going to challenge myself, and I'm going to surround myself with people who also want to have fun, and try new things, and challenge themselves too.

I'm not worried about my cancer coming back. I know full well that breast cancer is a nasty, sneaky thing, and the risk of recurrence will always be there. But FFS, I'm not gonna dwell on it! Even if I live til I'm 80, my time is precious. Every single day of it. I'm not going to waste any of it worrying about something that will probably never happen. (If it does, I'll just deal with it then. Probably by getting drunk and inappropriate, but you wouldn't have me any other way, right?!)

I'm not angry that I had cancer. I will be pissed off if it does come back, but unless that happens then I can't really say that it's been a bad thing for me. Don't get me wrong - there have been some difficult and frightening days. And I'm not overjoyed by the weight gain, short hair or scars. But as soon as I'm ok to run again the excess weight will be lost, the hair is already growing, and the scars will fade a little at least. And on a personal level, my cancer has given me much more than it has taken away. So I really don't feel that my own cancer diagnosis is anything to feel angry about.

I do reserve the right to be in a bad mood any time I please. I reserve the right to feel sad, insecure, afraid, annoyed, oversensitive, and irrational any time I please. If it's how I feel it's how I feel. But I also reserve the right to feel happy, and grateful, and excited - and not feel guilty about those feelings. I am rejecting any feelings of "survivor guilt" - the friends I have lost to breast cancer this year would all kick my arse if they could if I were to waste any time feeling guilty for being alive, or for being happy.

My heart is absolutely bursting with buckets and buckets of love for all the wonderful people I am so lucky to have in my life. Old friends, new friends, I love you all to bits.

Good. Glad to get all that off my chest.

I shall now continue dancing round my bedroom singing along to Mariah's greatest hits, looking forward to plenty of fun and silliness over Christmas and in 2016.

And I'll leave you with a few pictures from last weekend which I spent with over 40 other women who have had breast cancer this year. My wonderful friends who know how to enjoy life. (#WeAreTribe)

 

 

 

 

 

A totally epic year

This is what I was doing a year ago today:

 

 

Yup. It's been a full year since my last chemo.

 

It's been a full year since I had to wear this facking thing:

 

 

A year ago since I made my awesome sign:

 

 

It's also been pretty much a year since I hit absolute rock bottom - a horrible dark place I hope I never end up in again. The worst of it barely lasted more than a day but I had really had enough, and I briefly gave up. I remember the night when I couldn't sleep, kept awake by one thought running through my mind on repeat - "I don't like being alive and I don't want to be alive if this is what my life is". The next morning I had to get out of bed and face the world because I had go to hospital for an ultrasound scan and appointment with my surgeon. I went downstairs, saw my horrible, nasty, ugly, cancer face in the mirror and started screaming at it. At hospital, the ultrasound scan was phenomenal - the tumours that had been there before chemo were gone. There was no visible cancer left. I should've been bouncing off the walls, but I wasn't. I actually went to my GP because I thought I had lost my mind, and didn't know what else to do. I was prescribed a big dose of "giving myself a break and telling my friends what was going on and letting them step in and look after me" and it worked a treat.

 

Anyway - back to December 3rd 2014...

 

My friend Laura came round that night to celebrate with me. We had Chinese takeaway and Prosecco. Laura brought me three presents. Nude nail polish because now that chemo was done I didn't need goth nails anymore. A razor, because now that chemo was done I was about to become a hairy beast once again. And this calendar...

 

 

The calendar meant a lot to me. It meant Laura thought I'd stick around for 2015, even though on December 3rd last year I myself didn't dare think ahead as far as December 3rd this year. I decided to use the calendar to retrospectively record everything I did. It's been on my wall in my living room, reminding me to pack as much in to 2015 as possible. And now I can look back and see all the things I have done, places I've been, and people I've spent time with.

 

Think I've done pretty well! 2015 has been a lot of fun. I've found myself in a bunch of situations I would never have expected. I've challenged myself. Let go of a lot of crap. And now here I am, December 3rd 2015, a year clear of chemo, feeling happy, and well, and realising I now really need to get a 2016 calendar.

 

And in the spirit of packing as much into life as possible, I've double booked myself this evening. Drinks with work friends first, and then out with Laura to properly celebrate my one year chemoversary! Yeah! Now bring on 2016!

 

(Still got the sign haha! This time I've got my own hair, eyebrows and eyelashes though...)

 

 

YOLO

xxx

 

PS a little update, 4/12/15:

Laura is the most awesome mind reading friend because she gave me this present last night...

New rack

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

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

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

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

Since then I have had three surgeries.

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

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

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

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

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

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

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

A couple of weeks after the surgery in July. Flat and horrible and I still have a drain and my skin is falling apart.

 

 

More drain wounds

 

 

The wounds heal, the scars fade, but frankly the expander implants looked shit! I wasn't looking forward to more surgery - but I couldn't wait to be rid of them. That surgery was Wednesday - 3 days ago.

Pre surgery mark up.

 

 

The expander implants were replaced with permanent implants. Surgery was I think 3 hours. No drains! I came home the next day, covered in microfoam dressings to hold everything in place. Even with all that microfoam I started getting my hopes up...

1 day post implant exchange surgery.

 

 

And the next day the microfoam was removed. I still have a couple of dressings but when they were replaced yesterday I saw underneath them just a few steri strips covering the stitches. They are where the existing scars were so no new scars.

3 days post implant exchange surgery.

 

 

The difference exchanging those implants has made is incredible. I wanted to share it for anyone who has those horrible expander implants at the moment. I just wanted to say don't feel down about them! The surgery to exchange is easy, and the permanent implants look and feel amazing. (Well, I thought so anyway!)

I'm not quite done yet. There's the matter of nipple reconstruction/tattooing. I wasn't originally going to bother with that either but I trust my surgeon and his judgement 100% now and I am happy to let him do anything he wants haha!

And when I feel shit about my scars I just try and remember this:

"Never be ashamed of a scar.

It simply means you were stronger than whatever tried to hurt you"

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

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

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

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

A recap:

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

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

This surgery:

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

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

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

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

I repeat: NO DRAINS!

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

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

Lotsa love xx