The Unveiling….

So today was the big day – Bandages off and pathology report.

My drains were taken out last Monday, which is just as well really cos i kept catching them on baby gates and my feet and god knows what else. I’m far too clumsy to have great big tubes hanging from both sides.

My best friend came with me, She is an Intensive Care Nurse and has a end of life specialization (I know optimistic aren’t i!) but I figure if anything I don’t understand she will be able to explain, and she tells it to me straight.

First things first was the bandages coming off. The surgeon was pretty pleased with the healing, and its all quite low and smooth so no worries there.  I had the obligatory cry in the van on the way to the appointment so I wasn’t too upset during the appointment. It was weird to see the scars. Morbid fascination I suppose. I kept looking into the mirror but the breast nurse in there kept asking if there was an issue – which made me conscious of looking more. I thought Emma was going to say something to her about her manner at one point!

Next came the pathology report…. deep breath… well it wasn’t as great as I hoped. Now basically this appointment means you go in, they tell you what the lab found – tell you Congratulations there is no sign of cancer, and off you go on your merry way, mentally marking every day off on a 5 year calendar waiting for your remission date…except well they didnt.

The underarm tumour was 8cm at removal, the primary breast tumor was 2mm… yes.. the same size at removal as it was at diagnosis the chemo  had not affected it. Both were Grade 3 Stage 3 Invasive Ductual Carcinoma.  21 Lymph nodes removed – with all 21 showing signs of cancer scarring or active cancer.  There was also evidence of cancer in my lymphatic and blood stream, then came the most worrying bit. There had also been a breach on my chest wall. So basically I have had 6 cycles of chemo, lymph nodes removed along with both breasts… and the cancer was still there.. well that sucks! Not sure how I feel about this.. it might take a few days of processing.

Whilst I was trying to work out how I felt  they decided that my chest area shouldn’t wibble wobble like a hot water bottle and that I needed some post op fluid draining. The nurse went off to do that whilst Emma and I did some more looking in the mirror.

Now Emma and I have found the Humour in my cancer right from the start, she was the first person I told (straight from the hospital – she got the manic panicky snotty Tracie… we had lots of tea and biscuits!) From Emma calling me a tit, then going ooh I cant do that, to likening me to Mrs Potato Head, its all helped to make everything a little more bearable. But today she outdid herself, it was an appointment that I’m sure the breast nurse will never forget and we were in tears of laughter

So we were discussing randomly about how a couple people Emma knew has since been diagnosed with cancers etc and how it had become more heard about. So I ask if she thought its because it IS more “common”, or there is better diagnostics? Emma’s response was that  maybe its just more talked about now… and then came the fatal words

” Well yeah its just more heard about isnt it like lots of things that werent ever talked about before.. when you think about it”…. and at this point Emma doesnt hear the breast nurse open the door and enter the room so finishes with “cancer is just like Incest”

The nurse draws back the curtain with the biggest look of WTF on her face, and thats it Emma and I are gone… tears rolling down my face and I can barely even speak. The nurse remains stoney faced.. which of course sets us off even more.. She jabs me with a huge needle, drains 150ml of fluid and is gone

I get dressed and its time to go, head is buzzing. We get outside and I say “its not great is it” no she admits, it could be better.

Think this might take a fair bit of thinking through and accepting.

 

 

 

Rubbish at updating

I know I know I haven’t updated since July how rubbish am I .. anyone would think I was busy recovering or something!

Watch out for the influx of blogs posts again… I ready to carry on with the story…

 

(disclaimer – my posts are written at the time and posted later so altho they are posted now they were actually written back in July etc)

Still Alive Saturday?

So it appears whatever they gave me in theatre worked… really really well. at 9pm I was still in recovery out for the count – only rousing to vomit.. nice!  I remember them trying to wake me and trying to talk but every time I moved I was sick.. then back to sleep again. They kept giving me anti sickness meds, then realised that they would be making me drowsy too! Eventually I woke up enough to leave their care as was transferred down to a side room on the women’s ward.

I don’t remember much that evening – I slept lots, vomited even more. But i dont remember waking in huge amounts of pain, it was uncomfortable dont get me wrong and I was dosed up but it wasn’t as bad as I was expecting.

The following morning the nurses appeared with two heart pillows for me. Now I knew about these pillows as my lovely friends at Breast Friends York make them, the shape is very important as they sit under your arm and support the area. The relief once I stuck one of them under each arm was amazing.

I had a drain coming from each side, this was to drain post op mank and fluid etc that my body would send to the expanse of space where my  boobs once were. The nurses had helpfully put them into carrier bags (no 5p charge!) so that I could toddle about easier with them.

I toddled off to the toilet feeling very strange. It hurt but not in a OMG who chopped off my boobs way, but in my arm and my shoulders, and across the top of my chest – a weird tightness. I had a look in the mirror in the toilet, and if im honest had a little cry. I couldn’t see anything as it was covered with bandages but it was flat, and strange and not me… and OMFG who fed me like a prime foie gras whilst I was in theatre cos Im damn sure my stomach wasnt that big when I went into theatre!

You see when you are a HH as I was, you see very little past your breasts –  my feet, my stomach.. all there of course but not in my eye-line, my clothes didn’t hug my stomach cos it was overshadowed by Mount Mamarries, but suddenly that was gone and all I could see was my huge stomach! I cried again.. balls this is getting to be a habit. I was also surprised at what felt like a huge dent under my arm pit. The doctor reassured me that if needed it could be sorted when I have a reconstruction, and I suppose removing a large lump will leave a hole but it took my by surprise, oh well I suppose I have somewhere to keep my phone now rather than in my bra!

The kids came to visit and were surprisingly un bothered by it all, they looked at my bandages and that was it. My hospital stay was longer than I expected, the pain although not excruciating was pretty bad across the top of my chest, but the tramadol etc had little effect – I expect cos I have been on it years so somewhat immune. This meant that my option was Oramorph, which was making me sick.. and they wouldn’t discharge me whilst I was still being sick. I was also anemic, coupled with surgery blood loss and the fact that the last 7 months has been like a high speed train ride I was shattered.. like properly exhausted, so in a way the rest helped.

Whilst I was in a breast nurse appeared from the unit – she brought some handmade drain bags so I no longer looked like a wino with my carriers as well as a pair – apparently a rare occurrence! – of soft prosthesis. She brought two sizes with her a c and a d cup.. i went with the bigger pair as I was already dealing with a lot of changes and felt going a lot smaller would be a step too far.

Millie adored them! she tested them for softness by laying her head on them and exclaiming awwww soft and squishy.. it remains to see if they look OK!

Flat Friday

So its here.. Flat Friday .. thank god its a Friday cos I’m too tired to think up a witty name for it had it not been .. whip them off Wednesday maybe?

As expected I slept badly, I cried a little, had a jiggle of the girls for the last time, fell asleep the woke up to my alarm 10 mins later.. you would think even sods law would give me a break today!

Determined that even today I was going to carry on as normal I got dressed in one of my favourites and donned a colourful wig. Was Nil by mouth so no chance of breakfast.. so went and sat downstairs waiting for my lift. Whilst waiting I took the obligatory selfie.. looked weird… went back upstairs realizing I had forgotten to draw any eyebrows… back downstairs .. much better!

My lovely friend Matt had offered to take me this morning – the original plan was I was going to drive myself and Carl was going to walk up later with the kids to collect the car, but Matt wouldn’t hear of it and said he would take me. The mad fool was up for ungodly hour circuits classes anyway apparently. Now you cant be grumpy with Matt around cos even at 7am he is like tigger, on speed, in a really really good mood.

So off we trundled, more selfies and up to the admitting ward. Now its a bit rubbish and you cant have anyone stay with you on the ward till you go down. The admitting nurse spent ages going thru the list of numbers to call to check on my progress, that I was second on the list and due down about 10.30 and where I would go after the surgery. We grinned, neither of us wanting to break her spiel to tell her he was my friend. Later on she told me how lovely my husband was.

 

And that was it – hugs and he went and I was led to a waiting room… then I felt sick!

People came in , but no one really spoke, just a polite smile as they came in and left again. My consultant came in and took me to a room. She went back through what surgery I was having, how it would be done, how long it would take and what not. If im totally honest I wasn’t really listening, zoned out I guess, all i remember is thinking omg her hair is amazing – she always had it up but today it was nearly at her waist! random!

She then got me a gown and drew all over me with a green sharpie – I laughed and asked if i should be worried when she said she was writing ANC/MX on one side and MX only on the other to remind her what side to do the nodes on.  I didn’t understand what the markings were, she explained the central one marked the mid point, and she did it by eye and then was very impressed when she measured it and was spot on. I also reminded her that I needed to know the weight for our fundraising. She thought it was a great idea and promised me she would let me know.

I was taken by the nurse then to another room where they measured me for stockings – no sexy seamed ones for this 50’s chick – explaining the risks of DVT and that I would be given fragmin back on the ward. They went through my allergies, again I had to sign to say I understood what the surgery entailed, they put a tag on my bag, one on my wrist.. none on my toe thank god! The nurse gave me 2 paracetamol – explaining i would be given some now, pain killers in theatre and then on the ward, so that I was covered.. always makes me laugh considering the painkillers i normally take

Then a trip to the anesthetist who asked me how wide i could open my mouth (ooer!) and tip my head back and more form signing

And back to the waiting room to wait for someone to say it was time

A young theatre nurse came to collect me not long after – I couldnt tell you if it was near 10.30 – it certainly didnt feel like I had been waiting that long but my brain was pretty mush by now – it takes a lot of effort not to think you know! We walked to theatre, took a lot of doing not to run in the opposite direction… and i don’t run!!

I was taken into theatre and laid on the bed whilst they all pottered around. The anesthetist was a friend of a friend so small talk about her holiday helped me take my mind of the fact this was it. More double checking that I was fully aware of what was about to happen.  She explained that I would be given morphine now. As she put it in the cannula everything became fuzzy and strange. I remember her asking if it was kicking in and only being able to nod. She said they would be putting the mask on now.. and thats all I remember

 

Flat Friday Eve

So here we are the eve of Flat Friday (yes I know it’s gone midnight but shush!). This week has gone so fast it seems I haven’t had time to do anything let alone think.

Such lovely messages this evening being left for me by some lovely people, it’s really nice to think I am in some people’s thoughts. It’s also amazing how many people have supported the fundraiser for York Breast Friends. The raffle is going on until the end of the month so please get involved .. you can find out more here https://m.facebook.com/yorkbreastfriendsfundraiser/

Someone asked me tonight if I’m worried about the op. In honesty.. the op..no it’s just surgery, the doctors know what they are doing and I’m sure will do it well. It’s what comes after that is terrifying me.

As I’ve said before I’ve always been Bertha big boobs, I’ve never tried to hide them and infact actively displayed them on more than one occasion.

 I have always been proud that no matter what I weigh my hips and bust have been equal with a smaller waist. Damn it I am proud of my hourglass figure, and the whole vintage 50s thing I have going on works because of it. (Also check out the hair and eyebrows too.. damn you chemo!)

Yet tomorrow afternoon I will wake up and it will be gone. I will be more hourglass with all the minutes at the bottom. I will be flat… and I’m not sure how I will deal with that.

I know it’s only temporary until I am reconstructed and that the cancer is better gone etc etc but they are a big (obviously!) Part of me and my personality and I’m gonna miss the cheeky pair. 

Where am I gonna keep my spare change? Where will my crumbs fall now? What will blokes stare at in the pub!! These are all answers I do not have.

I am not too proud to admit I am scared. I’m scared that I won’t be able to look at myself, I’m scared my whole style that I fought so hard to keep will change, I’m scared I’m going to go back to that time and headspace again where I hated myself. Yes there are prostethics.. but there will always be an edge.. a break between where my bust should be and where they begin. I will look and be different.

I’ve fought so hard to keep me throughout this whole process, yet ultimately cancer gets to take a big part of me and I can’t stop that… not without risking my life anyway. Fuck you cancer.. what right do you have to do this?

I know, especially tonight with the atrocities happening in Nice, that sat here crying about my boobs is vain, that in the grand scheme of things it shouldn’t matter but tonight it does, and I’m sure over the next few days there will be lots more whilst I adjust to being less Jessica Rabbit and more Olive Oyl.

Thank you all for being along for the ride with me and knowing you out there helps. This is just one more step and my story is far from over. 

So wherever you are please think of me at 7.30 am as I am admitted, maybe say a little prayer if you that way inclined, if not at least offer a quick message up to ask that my surgeon not be suddenly struck with a case of hand tremors. 

For now I’m off to try to sleep. I’m kidding… I’m going to lay here and worry for the next few hours and fall asleep about 20 minutes before my alarm goes off.

See you all on the other (flat) side xx

It’s not just the treatment

I was scrolling thru my phone this morning and found a picture.. and then remembered I was going to write a blog post and didn’t. Damn you chemo brain (I can blame loads on that!) 

Anyhow as I’ve said before I had pretty much just prior to diagnosis decided I was pretty happy with me and how I looked. I was still actively trying to lost a few of the jiggly pounds but I didn’t look in the mirror and retch anymore. 

Now this is either irony at its best or straight down shitty but I didn’t realised how vain I was until cancer started stripping that away. Suddenly I looked ill.

I had to wear make up if I wanted to avoid the sympathetic head tilt that people often threw in my direction.

My eyebrows and eyelashes went (apart from one.. hang on in there dude!!), my finger nails are falling off, my face is ballooned..although going down a little now. 

But you know what it’s a small price to pay. If my options are be a little more heavy handed with the trowel and polyfilla for a year or so.. or take my chances with the reaper.. pass the blusher brush and chain me to boots make up counter. 

I took this photo before my make up and after to show the reality of cancer. Some days it’s just like a big game of dress up! 

Next time bagsy me the cinderella dress! 

Line in..line out!

Today is the day.. finally my Hickman line is coming out! 

I moaned like a stroppy teenager about having it but there is no denying it.. it did make things easier. I even managed to get rid of the district nurse visits and was taught how to flush my line myself.

But it is a pain in the arse (or chest!) .. I do catch it, and pull it, or fiddle with it, so will be nice to be tether free! 

The process isn’t nice. They literally numb you, seperate the cuff from any skin grown over it and pull it out. Not painful but a very bizarre pulling feeling. Then they put lots of pressure on your neck to stop you bleeding, dress it and you are done.

As with all cancer appointments then comes the cup of tea, pack of biscuits and please sit there for 10 minutes so we can make sure you aren’t going to die… that’s my favourite part! Maybe they would let me still come in for the tea, biscuits and don’t die sessions if I asked nicely?

However the following day I noticed the dressing was itching, and sore so popped back to the unit. Oooh said the nurse as soon as she saw me.. allergic reaction!

Wtf.. my body has had this exact same dressing on it for 15 weeks and now it decides it’s allergic. Give me a break! It’s sore and blistered but now has a different dressing on it which hopefully won’t make me look like I have the bubonic plague or a bad case of something lumpy and gross.

And already it’s Wednesday.. how did that happen.. 2 days to go till flat Friday.. holy mastectomy batman!

The result!

So Thursday came and my phone rang…

It’s the breast nurse.. we fed back your information and feelings, and your surgeon examined everything to them..and they agree that full surgery is the best thing for you!

Well I could have cried! I don’t want to spend the rest of my life worrying that it’s still there hiding in tissue. At least this way if it does come back its just really crappy luck!

She asked if I could go see the surgeon that afternoon. So off I toddled to the hospital again.

The surgeon was lovely and wanted to explain that it wasn’t her and that she wanted to look at all options. Apparently the decision makers had also suggested an immediate dermal sling reconstruction and had I considered it. 
I politely refused. Many reasons that implants had never been my choice – the risk of problem with radiation, the fact I would need them replaced regularly, the fact it retains the very tissue we were trying to remove..and the big one.. it would mean weekly hospital visits to be inflated like a leaky tyre! 

It sounds silly but I’ve done so much hospital visits I want to have my surgery have my rads..and be done. Have our holiday, relax.. deal with a life that isn’t based around cancer.. then when I’m ready I can start the reconstruction process. If I am going weekly for a pump up there is no “end of treatment”

She agreed and the consent form was signed. Practically a walk in the park..only half a sheet of a4 side effects..compared to the a3 chemo ones it’s all good. Oh she says we can also bring the op forward to the 15th

That’s next week? I could avoid thinking about it when it was 2 weeks away but next week?! Ermm

I’m handed an appointment card full of appointments.. hickman line removal, pre op, bloods, admission….OMG this is actually happening.. and really really soon!

It’s a funding issue!

So I got a phone call from my breast nurse… she needed to ring and tell me that there was a possibility that I wouldn’t be having a bilateral surgery in 17 days.. say what?! 

Then came the fatal words..”it’s a funding issue” it’s turns out that because the majority of my left breast is healthy with some suspicious.. but not biopsied.. areas that the decision makers in the trust felt that they couldn’t provide the funding to remove healthy tissue. Or if they did the bilateral they may not fund a reconstruction both sides..

Say what again! I was literally speechless. Would this not hugely increase the odds of reoccurrence.. well yes..and would I not look a total prat?! I am a HH – there are no HH prostethics.. and I cannot be reconstructed to that size.. seriously I would look like frankentank boob. 

And that my friends is when, as they say,I lost my shit! I was calm and polite but made it very clear exactly what I thought about the trust putting funding above my survival rate.. and what did they expect me to do with one flat and one HH – stuff it with a small bald man? Flop one side over comb over stylee? Seriously! I told her that should they decide I could have both then I wanted to discuss my other treatment options..

She said she would take my concerns back to the team and that she understood my feelings. I also made it VERY clear that should they decide to protect their “funding” …I would make it very loudly..and publicly.. known exactly how that left a mum of 4…

She said that she would feed the info back.. not to make any rash decisions and she would ring me Thursday with the answer..4 whole days.. 2 weeks before surgery.. man and they say avoid stress! 

Well that escalated fast!!

So today was the day of my oncology appointment with Dr Love God

One question that had been playing on my mind was that I understood when people had surgery to remove the cancer then chemo to “mop up” but I had done it all arse about face… did I face the prospect of chemo again? The Dr promised me I would not have any more chemo for this cancer. Yippee

I also asked him about my prognosis. I wanted to know what my chances were of it coming back. This , said Dr 50shades, was a bit more tricky. Normally the surgeon would remove the offending tumours and measure them, test them,chop them apart.. stick it all thru a database and the computer would spew out my probability.. however these results would be somewhat skewed.. we know the cancer has shrunk my main tumour.. so what should be the probability of a 9cm tumour..maybe be measured as a 5cm one instead..he said given the size, the node involvement etc he would suggest 75-85% of reoccurrence up to 5 years .. balls that’s a bit higher than I was hoping 

However, and here is his saving grace as he was nearly losing his status and being demoted to Dr death…with the bilateral surgery that risk is hugely reduced! Yay right answer Dr .

He was a little annoyed as there was no appointments showing to see my surgeon but he assured me his had sent his secretary “to follow the surgeon around until they got pissed off and made an appintment” and that someone would ring me Monday with a date. Eeek 

With a final cheery wave to the chemo team I headed home. As I got home my mobile rang and for once it was no one offering me ppi – altho as a side note the life insurance cold callers soon shut up when you tell them you have cancer! .. anyway it was the Secretary.. the surgeon would see me this afternoon could I go back now. 

The appointment with the surgeon wasn’t great. I cried , again. I think the enormity .. not just of my boobs!..but of everything was a lot to take in. We decided a delayed reconstruction would be best. For several reasons, the decision is mine and I wanted to have our holiday, lose some weight and ultimately being as it had taking me 6 months to deal with the diagnosis I felt I would need some time to deal with losing my breasts too before substituting them 

Bit like rebound relationships…I was concerned if I replaced Mr myboobs straight away with Mr falseboobs I wouldn’t ever fully deal with the life Mr myboobs and I had built, the fun we had, the places we had been, the jiggly way he sagged.. ahh such memories.. or it is mammaries? 

We discussed recon options and I think I will chose a diep – using the skin and tissue from my flabby stomach to create new breasts. Figure might as well redistribute it there is enough to go around. She also grabbed a handful of back fat and advised there was enough to make a “decent pair” there too.. thanks love now I feel really great .. her later comment of but there isn’t enough fat on my arse or thighs to make a decent size didn’t help redeem her that much.

So just like that, I was given a date of 21st July.. 3 weeks and bobs your uncles fanny’s your aunt, and my boobs are going to be in a bucket somewhere… shit that escalated quickly!