Plans 

It’s been almost a month since updating this blog, mainly because I’ve been  busy busy! 

The first thing I need to mention is that my brain scan came back clear….phew! One less thing to have to worry about. Now I’m just waiting on hearing what my next plan of action is, still waiting to hear if I’m eligible for a trial. It’s been four weeks and the waiting is now becoming unbearable and it’s not great for my mental health! I just want to be on some sort of treatment,  anything as  my paranoia is working overtime thinking it’s spreading by the day. 

To try and take my mind off all the bloody waiting, I have been focusing on living and what things I want to do whilst I’m still living. I’ve started compiling my new ‘fuck it’ list and thinking of ways to start ticking them off. Here they are, so feel free to help out if you can 😉 

Disney world Orlando 

Lapland

As many different premier inns as we can(jacks fav hotel :))

Paultons park/peppa pig world

Alton towers and stay in hotel 

Rent a motor home and drive up to Scotland & stopping along the way. 

Take kids to Lion King in London 

Make lots of scrapbooks/photobooks 

Centre Parcs 

Decorate the house with loads of xmas lights at xmas 

Watch every (popular) Disney film

Use up all my craft supplies making freebies 

Make dave take more photos!!

Have a massive party with all friends and family…..must be black tie so I can wear a posh dress! 

Tattoo with mum

Get on tv 

Ladies day at Ascot to wear a big fuck off hat 

Go to a festival 

Take mum to fancy afternoon tea

Meet Olly Murs – didn’t get around to ticking this off my last list so thought I’d better put it back on! 

Watch all the films on Film4’s top 50 films to see before you die 

Go searching for sea glass on beaches 

I’m sure I’ll add some more when I think of them but these are good for starters. I have tickets to Ascot Ladies day so just need to find a hat and I have tickets to see Olly Murs at Newbury races so need to stalk him a bit beforehand! Me and my mum have (I think) decided on a tattoo to get so need to get that booked in before I have to have any kind of chemo and we have been researching Orlando! All the planning is keeping me nice and busy. 

We have also just got back from a family holiday on a cruise. It’s been lovely getting away as a family (bar the two days the kids were bloody awful!) and I’m already looking forward to the next time we can get away. 


So for now I’m stuck still waiting for answers……whilst planning on how to live the rest of my life with as much fun and excitement as I can! 
K xx
Ps…..I’ve decided to go over to a facebook page to blog….so come over and find me at https://m.facebook.com/flatfabulousandlivingwithcancer/ 

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It will not break me.

I will not let it.

The last few days have gone past in a bit of a blur. They have been the toughest few days of my life but somehow we have still managed to have fun at times, that is the wonderful thing about having such amazing friends and family. We are so lucky on that front, we really are blessed with the best support network, which is good as we wouldn’t be able to do it without them.

You think that once you get the devastating news we got that you wouldn’t smile or laugh again, well we were smiling and laughing with our friends on the Wednesday evening just a few hours after our hospital appointment. I will not let this bastard deprive us of fun because then it has won.I do worry that I’m just in denial and soon I am going to have a breakdown or something. I’m worrying that I’m not crying all day and panicking. When I have a few hours off from worrying……I’m worrying that I’m not worrying. It’s fucked up! I am however compiling a new ‘fuck it list’ to keep me occupied. It will have lots of fun stuff for the family and also ones for just me 🙂

The amount of messages coming through from people has been amazing it really has. Just because you don’t know what to say doesn’t mean you don’t do anything, you just send a message saying exactly that. And that what I’ve been getting, the amount of love we are feeling is huge and we really appreciate it. Also the presents and flowers I’ve received has been really lovely and put a big smile on my face, thank you all so much.

When you get a cancer diagnosis, birthdays become tough, well they did for me anyway. Every one that came around I felt I had to celebrate the hell out of it ‘just in case. I wanted everyone else to acknowledge it too. I wanted them to be a big deal, who knew if I’d see the next one. To be honest I feel everyone should be like that with birthdays as you never know what is around the corner. This year however feels different. My birthday is on Wednesday, just a week after being told my cancer is incurable. I’m torn between wanting to celebrating it and also feeling so scared to do anything. The pressure of doing something great for it ‘just incase’ feels just a little bit too real now. I think it’s a bit too soon to be organising something big and grand, the emotions would have far to big for me to cope with. Maybe I’ll arrange a big belated birthday party once we have a plan in place.

But before I can turn 33 I have a brain scan and right there reality smacks me in the face! I’m having an MRI in the morning and I’m scared. I have no reason to worry about the results as I have no symptoms to make me think it is up there too but I cant stop worrying. The scan is so my oncologist has all the information to give to the guys that do all the trials. Please can everyone have everything crossed that it comes back clear and we are only dealing with the one place!

So for now we are carry on carrying on. Doing what we do best and not let this fucker get us down. We have a cruise with the kids at the end of this month and already discussing where abouts we can go after that. Life is for living and that is exactly what we are going to do!

 

K x

The one I never wanted to write

This feels so surreal writing this, its as though I am writing it for someone else.  It’s taken quite a while to compose this one, had to go away and come back a couple of times.

The day before I flew to Vegas I got a call from my breast care nurse. I was shopping in Superdrug for last minute holiday bits and saw an unknown number calling me. Normally that means the hospital and as I had mentioned I didn’t want any results until I was back I thought maybe she was phoning with good news so I could go away happy.

Nope.

She asked where I was and did I want to phone her back when I got home. Err….no thanks, from the tone in your voice I know its bad news and I wont be hanging up the phone until you tell me. In the meantime I have walked out of the shop with my basket full off goodies….whoops! There are some new lung nodules that have popped up and it doesn’t look good, can I go into see my oncologist tomorrow. Think you’ll find I’m off to Las Vegas tomorrow. That’s when it hit my BCN that she has done something that I asked not to, she felt awful. She apologised so much but the damage was already done. I can’t be too mad though as she is normally an amazing support to us.

That night we were off to stay in a hotel at Heathrow ready for our flight in the morning. It was there (well the pub down the road) we got drunk and decided to not let it affect our holiday and to try not to mention it whilst we were away. I mean what would it change?!

So we did it, we went to Las Vegas and had a bloody amazing time. We ate, we drank, we laughed, we did a zipwire (which was terrifying for someone petrified of heights!) and we renewed our wedding vows! All in all an awesome holiday with two awesome friends who were able to take our minds off what was going on back home.

 

When we got back my breast nurse managed to squeeze me in for an appointment with my oncologist on Wednesday.  There was a tiny part of me that thought/hoped that he would say there was a possibility that it could be something else.

No such luck.

Cancer.

Fuck.

The changes in my lung are tiny, so tiny that they can’t biopsy but they can see enough to know its cancer.

This means, its spread. Stage 4. Secondary. Metastatic. Incurable. Bollocks.

It’s early stages so there are quite a few treatment options to try. First thing my oncologist wants to go for is a immunotherapy trial. He is going to contact the correct people and hope there is something out there for me. If there isn’t at this time then it will be standard chemo until something becomes available. But I will be having some sort of treatment forever more now.

At the moment we are in complete shock and walking around in a daze. I don’t know what I want to do but what I do know is that my body doesn’t want to sleep or eat at the moment. I’m terrified of turning the light off at night and shutting my eyes, so I don’t.

I think if I write down exactly how I feel right now and seeing it in black and white I would break down. So for now we wait, we wait for me to go in for a brain scan that will be needed for any trial people we go to and we wait to be contacted to see what the next step is going to be.

I’m sorry if we didn’t get to speak to you personally about this, it has been ridiculously hard to tell people.

Life has to carry on, especially for my two gorgeous boys who do not deserve any of this shit. So around them we are trying to be as normal as we can…..very tough at times as I just want to hug them and never let them go.

 

It’s that time again.

Scanxiety time!

My time of living a relatively normal life is over for now. All I can think about is my scan which is on Sunday. All my thoughts are consumed by the utter dread I have about having it and what they are going to find on that scan. I’m a realist, I know the chances of it finding something is quite high. I know it’s only a matter of time before I get the dreaded news again. Everyone will say ‘oh it’ll be fine’ but they don’t know. I read enough stuff in my support groups to know that the odds are not in my favour. I know that the way my cancer keeps fucking coming back is not good.  I try and live the best life I can without these morbid thoughts taking over too much but scan times make it almost impossible.

The nights are the worst, as soon as the lights go out my brain wakes up…’hello! lets think about death instead of trying to get to sleep….yes that definitely seems like the sensible option here’.  I’m just so thankful for smart phones at this time, thankful for social media, podcasts and games. These keep me sane and from waking up my husband in the middle of the night with an anxiety attack. Probably the reason why I’m constantly tired though aye!

It’s funny, when I got the appointment letter in the post I was actually relieved they weren’t scanning my head. So at least for the time being I wont know about any cancer that may be in my brain. I was happy that maybe my oncologist thought there wasn’t a real reason to scan it. Little things bring a little positivity in the complete shitstorm that is my life.

So Sunday is the scan, some of my favourite people are taking me so at least we might be able to make it slightly fun……until the time comes when I have to go in that dreaded room all by myself (off my face on Diazapam) and lie there whilst they scan me for cancer.

I do however go to Las Vegas on Wednesday. I have asked for my results after I get back as I don’t want anything to ruin those 5 days! I’m hoping I will be having so much fun out there that I won’t have time to even think about my results. What I will be doing though is renewing our wedding vows over there 🙂 .We’ve been married 5 years and we were talking about renewing our vows last year and having a big party, but unfortunately the cancer coming back ruined that! So we thought as we are in Vegas, why not do it there with Elvis. Totally tacky, totally awesome!

elvis-impersonator-wedding-chapel-vegas

 

So the next week or so is going to be strange, a complete mixture of extreme lows and highs. I know it’s crazy to worry about things that I cant change but it’s human nature.

 

Finally, I thought I would leave you with this snapshot. I wouldn’t normally share it but I loved it so much. We were upstairs watching TV on my bed and my youngest who is 3 years old was cuddling me and just started stroking my mastectomy scars. He was so sweet and caring, kids are so resilient in tough times they really are and I am so grateful for my two amazing boys.

18010430_10154285051640855_8393879523588854392_n

 

K xx

 

A Moment Like This

Tomorrow is Mother’s Day and it really is a double edged sword. I love the fact that the kids and hubby will be spoiling me and I get to spoil my mum too, but then there is the other part of me. The part that gets upset thinking that it may be the last one and next year the kids wont have a mummy to buy flowers for. I also think about all those mummies that are not with us any more and have left small children behind or parents that have sadly lost a child.

Yesterday I had an invitation to go to my 5 year olds class for a Mother’s Day treat. We all went into the school hall and they sung us a couple of songs and then went to do some craft activities together. I was sat there looking at him and trying not to cry. I couldn’t just sit there and enjoy it, I was constantly thinking ‘what will he do if I’m not here next year?’ and ‘ I hope the teachers will look after him if that happens’.

I wish I could just enjoy the moment but I cant and I think this is going to happen at every significant event that crops up, it’s just what happens when you are faced with your own mortality.

 

In other news….

I’ve had my blood test all ready for my CT scan in a few weeks….arghhhhh!! I’m now shitting myself even more now. Every single day  I take some time to try and think if I have any new pains and could it be sinister. I don’t have headaches or a cough though…..that’s got to be promising hasn’t it?! F**k me it’s exhausting!

Oh and I got my bucket list tattoo done……..it’s so shit I cried……..it’s getting re-done on Monday! Will update you all once I’m happy with it!

 

K  xx

It’s a new dawn, it’s a new day….

…but I’m not feeling good.

Its 1st March and another new month. It shouldn’t fill anyone with fear should it but it does me. A new month means we are getting closer to my scan. Being in March now means I have to go have blood tests done THIS month ready for my scan NEXT month.

I’m already preparing for the worst and I still have two months to go until I get the results. I have requested my scan to be just before I fly out to Las Vegas at the end of April and get the results when I’m back.  I knew it needed to be done that month but I didn’t want anything ruining my time away!!

I’m petrified I really am. Everyone tells me to think positive and that it’ll be fine. But how can I?! It’s come back twice already and really quickly so why would it decide to fuck off now.

I feel like my timer is running out of sand and I need to squeeze as much as I can in as short time span as possible.

We’ve just done New York which was bloody amazing and hopefully we’ll get to do it again as we have so much more to see there. We walked through Central Park in the thick snow, we went up The Rockafellar Centre and viewed the city at night.  We saw the Statue of Liberty, Grand Central Station, Empire State Building, 9/11 memorial and so much more. We also went and watched Avenue Q and Drunk Shakespeare (this is brilliant btw!) and ate shitloads of amazing food. We were shattered but had a truly wonderful time away together. Flying club class on the way home definitely helped…..and also ticked something off my ‘fuck it’ list!

Speaking of that list I compiled a while ago I’m hoping to tick off a couple more too. I have booked tickets to Ascot Ladies Day so I can wear my big fuck off hat 🙂 and I am booked in to have a tattoo this Saturday! I’m definitely ticking more off that list than I thought I would. Just need to get on with meeting Olly Murs….! 😉

We have also just booked a cruise with the kids. Me and hubster have done 4 cruises and I really can’t wait for the kids to get on board!

The first half of the year is going to leave us skint but with plenty of memories and that’s what it is all about.

K xx

Scaredy Cat

It is bloody exhausting work being scared.

I’m scared of this cough that just won’t bugger off for good, scared it is something more sinister. Everyone seems to have a stubborn cough at the moment so why wouldn’t mine be any different……but I just cant shake the feeling that it’s bad news. It went away and it’s now back again but only a couple of days ago so trying not to panic too much.

I’m scared to shower. I know, sounds crazy doesn’t it. Since I found my original lump in 2014 in the shower I’m always very apprehensive washing that area in case I find other lumps. I check my whole chest area and neck and then finish up as quick as I can.  I wonder if this will ever get better but it’s been 2.5 years now so probably not!

I’m scared to open up Facebook in the morning in case anyone in my support groups has had bad new. There are good and bad points about being in a few support groups and getting to know the girls on there. The good points weigh out the bad points massively but unfortunately the statistics show that some of us will have the cancer come back and some will get taken far too soon. It gets harder the longer I am friends with these amazing girls.

I get scared to book anything far in advance. At the moment anything I book after April (when I have my next scan) makes me nervous. Am I tempting fate booking something? Am I going to be well enough to go? Am I even going to be here to be able to go? I’ve booked to go to Ascot Ladies Day in June and even that is making thinking about my future.

I’m scared when it’s time to go to bed even though I am always shattered by the time this comes. I personally hate night time, the dark brings out all my nasty thoughts and insecurities. I lie there trying to go to sleep but my brain decides that is the time to wake up and think about death. To be honest I cant blame it, it has been the same since my teens, not as much but it’s always been there. Thank god for podcasts and games, they keep me from having a massive panic attack and waking my husband up.

I’m scared my kids might have to grow up without their mummy.Every time they are crying for me my heart breaks that one day I might not be here to make everything better.

I’m scared that I get jealous of people around me that don’t have to deal with this shit. I wish I could go back to being naive about Cancer and not have the constant black cloud over me.

 

I’m trying my best to get on with life and not let these thoughts take over but man, it’s f**king hard!

K x

Isn’t it ironic….

I never thought the day would come when I would be posing topless in The Sun….but that is exactly what happened last week! Pretty ironic seeing as I have zero boobage! ;o) I am not normally a fan of this paper but thought it was too good an opportunity to pass up to show that living without reconstruction is not crazy or strange. Click here to read the article.

I had a wonderful day in London with three other ladies showing off just how amazing we all are! It was a loooong and tiring day but it was lovely to get my hair and make up done and tbh have a day out!

 

The response was incredible and I’ve had some really lovely messages from family, friends and strangers. It was all made  more worthwhile when the support group I’m in called Flat Friends gained new members because of the article and that was one of the main reasons I did it. If you, or anyone you know, is living without reconstruction after a mastectomy (single or double) please come and join us!

Now at the weekend I went to the wedding reception of an amazing woman and her partner. Heidi is one of the BBB’s and has been through some bloody awful shit but right now she is making the most of life.  If you don’t already know her she has an amazing and funny blog called Storm in a Tit Cup, go check it out. Me and Dave didn’t know anyone but that did not stop us having a fab night. The band were amazing and we just danced all night. Oh and I also met The Unmummsy Mum who was just lovely.

 

I remember when one of our group, Danielle,  found Heidi’s blog and knew instantly that she belonged with us. She stalked her, got her contact details and told her all about our awesome group and that was it, Heidi was a Badass Booby Bitch! Unfortunately Danielle has since passed away and it is coming up to the 1 year anniversary of her passing. There is not a day that goes by where she is not missed in our group. She was such a huge part of our lives with her awesome sense of humour and her amazing way with words. She is missed so very much and we still can’t get our heads around the fact that is is gone.

 

At the moment I am finding it quite difficult to live without any hospital appointments or treatment. I know I should be embracing the freedom of not needing anything but it’s like my safety blanket has been whipped away. Only people in the same position will understand how shit scary it is to just be left to get on with life after cancer treatment. Especially with how mine came back so quickly both times I am panicking at every ache and pain. At the moment my back and arms hurt and every scar I have seems to be really painful, I have also had a cough for bloody ages. I’m trying not to worry too much, deep down I know its because I’ve probably done too much and the cough is something everyone has at the moment. Thankfully the cough has now disappeared……phew!!

I’m also feeling incredibly guilty about having no energy/inclination during the week to do anything with my youngest. I have every intention of going out and taking him places like I did with my eldest when he was younger but I get indoors and just end up staying put. I really do need to make more of an effort to get out and about, but for now I have to focus on the fact that he’s fed, clothed and loved and hope that is enough for now.

 

I am off to New York next weekend though….woohoooo!!!!! Will update you all when I’m back.

 

K xx

 

 

What to do now?

Even though we had some proper shite news just before we managed to have a wonderful family time over the festive period. I cooked for everyone on Christmas Day and then headed over to more family for another fun packed day. The kids had such an amazing time, probably had to do with the fact that I went a bit overboard with presents! It felt so special and emotional watching them put goodies out for Santa and opening their stockings in the morning. Everything like that is always tinged slightly with the nagging thought ‘what if this is the last one’. It will never go away, hopefully it’ll start to fade soon!

Seeing in the new year is always emotional but the last couple have been tough. I’m happy that I’m seeing in yet another year but I’m also sad thinking about what we’ve been through and if we’ll be seeing in the next year together. It fucking sucks that I can’t just enjoy the bloody moment!

xmas2

So that now seems like an age ago and everything has gone back to normal. Hubby is at work and kids are back at school/preschool and that also means clinics are back up and running at the hospital. I had a meeting with my oncologist yesterday and it really was an up and down day. First we discussed the possibility of more radiotherapy where the lymph node was removed, I said I was pretty sure I hadn’t had it up as high last time. Turns out I was wrong. He phoned me today to say my first lots of rads did actually cover that area so I wouldn’t be able have them again. This really put a downer on my mood. I was really hoping that I would be able to do something treatment wise to mop up any stray cancer cells. I feel a bit uneasy just having the node removed and carrying on with life, but I trust my oncologist and I’m going to try and live without thinking ‘what if’. I will be having a CT scan in 3 months time to check everything is still as it should be. So got a lot to cram in to that time!

I am going to research into alternative methods though, think I would feel better if I knew I was doing something to maybe help even if it’s just cut down on sugar or take a supplement of some kind. Gotta be worth a shot right?!

I am also going to be booking a weekend in New York with Dave for next month. We need a bit of time together and I’ve always wanted to visit the city. So if you know of any good places to stay or go, please do let me know! I’ll also be working on a new ‘fuck it’ list to give me something to focus on…..always happy to hear suggestions for this too!

K xx

3rd time unlucky

Yesterday I got a surprise phonecall, it really shouldn’t have Surprised me that much though as I know my team at Frimley Park hospital have a weekly meeting on Friday mornings and I often get calls straight after that. I think I was focusing too much I on my meeting I had scheduled next week. It was my breast care nurse to say the results were in from my removed lymph node…..it unfortunately had cancer in it.

Now I was kind of expecting this news but I was also really hoping it wouldn’t be. That maybe we could have a bit of a break from fucking cancerland. But no, it had to come back again!

The postitives to try and cling on to is that it’s out and my scans show that it is nowhere else. I will be forever grateful that my awesome surgeon  went in and got it even though it was a bastard of a job…..my BCN said she was telling everyone all about it in their MDT meeting and was definitely proud of what she had achieved and so she should be.

For now we don’t know the plan or if there is going to be one. She mentioned that my oncologist has said it’ll probably just be follow up scans and be monitored closely but I’m not sure how I feel about that. I did say I will gladly have some more chemo!!

I spent yesterday in a complete daze and now I have to try and snap out of it so we can enjoy Christmas as a family. Even more so now, I want this to be a truly amazing one.

I will be having a meeting in January and will update you all when I know more.

In the meantime please go  hold your family close and have an amazing Christmas.

Oh and please please please check your boobs and bits!!!

 

K xxx