Thursday, 10 June 2010

The Hospital Stay

At about 8.30am (I think) the Doctors came on their rounds.

They checked my drains (I had 3 at this point with 2 collection bags - one for my right breast where they had put in the regular implant, one for my back, and one for my left reconstructed breast). The back and the reconstruction drain were both filtering into the same bag, and when the doctors measured how much fluid had drained they seemed rather alarmed at the amount and started talking about blood transfusions and possibly a return to theatre as there was much more than expected.

So back on Nil-by-mouth for Emma then (great, just as my appetite was warming up).

Nobody seemed able to make a decision as to what was going to happen to me, so I was left with instructions not to eat or drink until they found out what the surgeon wanted to do with me. In the meantime they asked the nurse to put the 2 drains that were currently sharing a 'blood bag' (as my sister-in-law lovingly referred to them) to be separated in to 2 separate bags to help them ascertain which site was the one that was loosing the large quanities of fluid).

Lunchtime came and went, no news from the nurses as to what was happening (apparently they were trying to get hold of Mr Javaid my plastic surgeon) and still no food for me :(

I think it must have been about 2 or 3pm before I was finally told that my surgeon was going to come and see me and decide if I needed to go back down to Theatre.

(Bearing in mind during all this, visiting hours don't start till 2pm and I've been sitting in my bed alone texting all the people that I thought should know that I could be having a blood transfusion - in hindsight I realise this was a pretty mean thing to do as it sounds pretty serious and no one dared text to find out how it had gone so were just waiting for more details).

To those that received that text and spent hours unnecessarily worrying, I'm very sorry x In my defense at the time it all seemed quite definate and I was just pleased to have something to message people!

Anyway the surgeon finally came up to see me, checked my new blood bags, said all was fine and no blood transfusion or further surgery would be required, and yes I could now eat! AARRGGGGHHHHH!

I think at this point I then rang mum and asked her to bring in a cheese sandwich for me as I had missed lunch (which she did with the crusts cut off and everything!!!) That was the BEST cheese sandwich I think I have ever had or will have again).

I apologise now that I don't remember who came in to visit me on which day but would like to thank everyone that did for the cards, flowers, gifts and chocolate (and those of you that texted etc) all I can say is that I felt like a celeb in my own private room as there was very few times during the 2-8pm visiting hours over the whole week where I was actually without visitors, so thanks very very much xxx

Here's where the rest of the week turns into a bit of a blur as I've left it so long to write this post since coming out,but here are some high(and low)lights that I feel are worth mentioning.

The Cathetar -
This was such a godsend, the nurse that was looking after me on the first day thought I was mad as I was raving about having it. Compared to the issues I had during my QEII stay with the bed pan etc it was amazing not having to worry about needing to wee. Not quite so sure about the positioning of the bag of wee that was on full display to any of my wonderful visitors and anyone else that happened to glance into my room. I was quite sad to have to have it removed.

The first time out of bed -
They were very good with me as I was quite apprehensive about getting up after fainting in QEII the first time I got up. There were two nurses and they let me do it really slowly.
Infact it was nowhere near as bad as my previous experience and I managed to make it onto the arm chair next to my bed without any problem.
When I was comfortable they ceremoniously placed the 2 blood bags onto my lap (by this time the drain in my right breast had been removed)and said lunch will be round in a minute, you can have that in the chair.
Now I don't know if you have any mental picture of these blood bags but they are semi opaque silicone sacks full of blood and puss and really the worst thing you can think to have on your lap when trying to negotiate hospital provided roast turkey, mash and gravy!

I'm quite aware that I have yet to give any details on the sucess of the surgery, I plan to dedicate an entire post just to that so don't worry. (I'm also considering posting photos (non sexual I promise)of my new boob etc but as yet haven't decided if I should or not.

The emptying of the blood bags -
Every morning they have to empty the drains and similar to the lunchtime situation the nurses are clearly unable to comprehend that actually the patient might not appreciate this being done quite literally under their nose. They are obviously used to the spluttering sound of nasty body fluid being emptied from a drain into a bed pan (and the visual aspect too) however I am not! Yuk.

The 2nd day of doctors rounds -
On my second day of recovery (Weds) there were about 15 people on the doctors rounds, it was the weirdest of experiences as I was still a bit spacy from morphine. They all gathered around my bed in my little room and stared at my boobs, talking about me yet at the same time manage to make me feel like I'M imposing by being in the room while they study me! I really wanted to wave my arms in the air and shout "I am here you know and I am a normal person with a brain so don't talk through me". I felt quite dizzy when they all left it was like an out of body experience.

The Nasty Nurse (NN) -
On Friday I was starting to pine for Amber. We had kind of decided that it was best not to bring her in to see me as it would upset both me and her and she was quite happy at home, but on this day I was really missing her, so I asked one of the nurses (NN) if she would be allowed in to see me. She said flatly "No, she can't sorry".
Later that day my bestest friend Shiv travelled up from London to visit me, we were both really looking forward to spending the afternoon chatting and catching up, which we did for about an hour uninterrupted which was lovely.
I think Mad then joined us and my dad came a little later, then 'Nasty Nurse' came in and said you have 2 more visitors outside. So I said great, send them in! She said "You are only allowed 2 visitors at a time, I didn't realise you had 3 people in here but I'll let that go, however 2 of these visitors will have to leave before anyone else can come in"
I was quite shocked by this and said as much to her, stating that I didn't realise this was the case as I had been having more than 2 visitors on several occasions since I had been on the ward. She (quite rudely I felt) said "It's in the bedside manual" and walked off leaving me to decide who to send away. I didn't even realise there was a manual, let alone that I was meant to have passed some exam on the contents!
Later that evening I spoke to one of my 'Lovely Nurses' about the situation and she said that my visitors could have waited in the day room (or Shiv could have waited in there rather than going home earlier than planned). Thanks for making that rule clear NN.
Ironically later I came across said bedside manual in the bottom cupboard of the bedside table (which I had no need to look in before this time) and read the section on visitors. Which for the record states that due to lack of available space around the beds they kindly ask for no more than 2-3 visitors at any one time per patient. Do I need to say it again "I'M IN A PRIVATE BLOODY SIDE ROOM AND I HAVE LOADS OF ROOM!"
Just to twist the knife a little bit further the NN later came in and said (rather triumphantly I felt) that they needed my room for another patient and I would be moving out onto the ward so I needed to pack up all my belonging immediately ready to be moved.
Anyone that came to visit me in that room will know that I made myself at home, there were bags, cards, flowers and magazines everywhere in that room, luckily Gail and Becky were still around so they helped me pack, I wasn't offered any help from NN or anyone else for that matter. About an hour after we had finished rushing to pack everything ready for an 'immediate move' they finally shifted me out into the ward.

I will probably come back and add to this post as I think of things but it's getting late tonight and I will end it here for now.

Wednesday, 2 June 2010

Enlargement of Reconstructed Boob NEW

Three weeks after the op I had my first expansion appointment. The procedure is very straight forward with the doctor simply inserting a needle into the valve/port that is attached to the the implant and injecting saline solution to expand the implant.
There was 225 ml capacity remaining in the implant and they would do this over a couple of visits. 100 ml today and then they would reasses the size comparison when I returned. Basically this is because the newly constructed boob’s skin needed to stretch with the implant increase.

It was the most bizarre feeling and it was exactly as I imagined it would be – like a balloon being blown up inside my boob – I felt like I did when I was breast feeding and my boobs engorged, I used to call them my Pammies, it was the same sensation but only in one boob. Its really strange though as my other implant was a set size I was really concerned that they would over expand it and I would be lobsided.

When one boob is tight and feels stretched it feels bigger even if it doesn’t look bigger and I was convinced they wouldn’t need to put any more in. More worryingly I only had a week and a half until I was going on holiday and wanted my boobs to be as equal as possible.
After the op they were quite evenly matched but as the swelling reduced there was definately room for improvement size wise on the reconstructed size.

A week later I returned for them to see if they could or should put any more in, they had said that often they over expand it then take some out again once the skin has stretched. I wanted to avoid this at all costs.

The doctor that expanded me this time was a young Scottish guy and he was really funny. He said as he was injecting the saline “There is something quite satisfying about watching a breast grown right infront of your eyes!”. That did make me chuckle. They managed to put the remaining 125ml in and thankfully I didn’t look lopsided, I did however feel very buxom all of a sudden and walked away from the hospital in the sunshine, in a vest top feeling really pleased with my new ‘rack’.

Thursday, 20 May 2010

The Dressing Clinic NEW

A week after my op and 5 days after coming out of hospital, I had to go in to the dressing clinic to check my woulds were healing well.

It was a very straight forward appointment having to wait only 5 minutes to be seen. I mentioned that the valve under my reconstructed breast was really uncomfortable, to the point of it making me wince if I moved in the wrong way, and that it was in a awkward position in regards to where my bra lays as it digs in.

The nurse explained that the valve had a magnet on it and that the surgeon would be able to reposition it next time I see him and not to worry. Phew.

They booked me in for a weeks time and said that in a couple of weeks I would need to come back for my reconstructed boob’s implant to be expanded (this is not filled to capacity straight away as there is obviously lots of swelling etc, meaning they don’t know what size it will end up). So they wait until all the swelling has reduced then they expand the implant via the valve mentioned above with saline to match the other regular implant in my case.

A week later I returned to the dressing clinic, this time waiting over an hour to be seen and then when I mentioned to this nurse about the magnet and getting the valve moved she explained that the other nurse had given me the wrong information. Aarrghh what is it with this hospital and just making up information as they go along?

She explained there is a valve that is magnetic but I don’t have one like that – my port will have to stay there for a few more months until all my expansion appointments are done but the surgeon will have to remove it completely for me to get rid of the discomfort. In the mean time all but 2 small sections of dressing remained, one on my back and one at the bottom of the reconstructed boob.

Monday, 10 May 2010

Post Op

7.45pm Monday, 10th May
5 hours 45 minutes since being knocked out I was coming round in Recovery.

Unsurprisingly I remember very little from this time apart from feeling very sleepy and being told I had a button to press that I could use every 5 minutes or as necessary to deliver a dose of morphine into my bloodstream. I think I was in recovery for about 45 minutes and every single 5 minutes that passed I pressed that little button.

I was taken up to ward 11b and put in a side room (number 6 for my memories sake).
I knew it was meant to be a warmed room and I had been told in recovery that it already had the heater on in the room so it was all ready for me (it wasn't of course and they had to run around trying to sort it out as soon as I arrived on the ward).

I asked the nurse to call Jay and my mum to come in as I knew they were both waiting at home desperate to know I was ok. The nurse that rang wasn't very clear so only Jay came along at first but when he arrived she asked him where mum was and he called her and told her to come over too.

Again I remember very little except for eating half a jacobs cracker with a little butter and drinking quite a lot of water, and having a very frustrating moment trying to get comfortable with about 10 pillows propping me up and not knowing what I needed my mum or the nurses to do to make it any better.

I know I tried to sleep but every 5 minutes (possibly as soon as the morhpine started to be processed) I opened my eyes, every time certain that at least 30 minutes had passed up until about 1am when I gave up and asked the nurse for some kind of sleeping tablet.

Even with that I think I woke up a few times but remember waking in the morning with no abiltiy to move without any pain (as obviously while I had been asleep I hadn't pressed my little button and the morphine had worn off). That morning was the worst, I felt awful, I was extremely stiff and just didn't know what to do with myself. The nurse tried to reposition me but I had a repeat of the last nights strop with the inability to explain what I needed her to do with my pillows to make it bearable for me.

Not long after that I think my drugs must have kicked in as I don't remember feeling that bad for very long. I managed to eat a custard cream and drunk a bit of water but didn't have the appetite that was so lively before my op which was rather disappointing to me, I felt quite cheated that finally I could eat and my body wasn't that bothered anymore. Typical!

Pre Op

7.00am Monday, 10th May.
I arrive with Jay at Lister Hospital EAU (Elective Admissions Unit) to "check in?" for my operation.
I had been told at my pre-op assessment that I was first on the Surgeons list for the day so should be going down at about 8.30am - quite a manageable waiting time 1h 30 mins.
They weighed me and measured my height (for the 3rd time this week?!) and put me in a bay next to a window in the pre-op waiting area.
I found out after about an hour that actually I was 3rd on the surgeons list and should be going down to theatre after lunch. A nice term I thought to use with someone that was nil-by-mouth and hadn't eaten since 7.30pm the night before. Great.

Anyway they gave me a snazzy gown, DVT prevention stockings and some paper pants (sexy) and told me to get changed, my surgeon would be round soon to see me and do the necessary markings on my so far fairly unscathed body.
The aneasthatist came round first and confirmed I'd be having a general anaesthetic and what to expect when I came round etc etc.
I asked her if I would be having a catheter as in the pre-op assessment I was told this was an option, she said they prefer not to use them due to infection risk - dammit.

Not long after this my wonderful surgeon Mr Javaid arrived with his equally wonderful assistant who I'm afraid I can't remember the name of. They had me stripped to the waist and started drawing all over my boobs and my back, I'm pleased to report they were very specific and really made an effort to make sure the section from the back was neither too large nor too small for the 'hole' that was going to be left after the original breast tissue was removed.
They also explained in more detail exactly how the procedure works, so here you go...

The breast tissue is removed by my consultant (Mr Agarwar) at the same time my Surgeon (Mr Javaid) and his assistant (Mr Noname) put the silicone implant in my good boob (soon to answer only to fab boob!).
After the initial surgery is complete, Agarwar goes off for his break and Javaid and Noname flip me over (gently I hope) cut an eliptical (eye-shape) section of tissue away from my muscle and skin, just under my left shoulder blade, leaving the armpit end attached along with the blood vessels and nerves (to allow a lesser chance of the reconstruction being rejected). This 'portion/slab/lump' of flesh is then rotated 180 degrees and fed under the remaining skin under my arm and relocated in the space where my boob used to reside. They then swiftly stitch the gap on my back together leaving a rather long but very neat straight line scar across my back (horizontally) which when healed will lay under my bra. I am then flipped back over again for them to build the mound that will become my new boob. At the same time inserting the expandable implant under the tissue ready for pumping up at a later date. Phew.

All of this should take approx 5 1/2 to 6 hours.

So, when the surgeons had finished explaining what they were going to do to me and had confirmed that yes I would be getting a cathetar and no they couldn't guarantee what my new bra size would be as they "don't make silicone implants in cup-sizes" apparently.

I was left for another 2-3 hours waiting to be told I could go down to theatre.

At 1.00pm they finally said they were ready for me so off I went with my carrier bag full of belongings and a drafty gown down to theatre, I was put on a gurny (I think it's called) and told we were just waiting for Mr Agarwar to arrive (Arrive? I thought, not being funny but shouldn't my surgeon actually be ON the premises before they take me down to theatre?) Well obviously so as it was another 30 minutes before they did anything else with me.
I was kindly lent a copy of Heat magazine from the staff room while the anaesthatists sat and chatted about what they'd eaten for lunch (does no one in this place realise how hungry pre-op patients are before going into surgery when they have been nil-by-mouth for 18 hours?!) I did actually ask them to talk about something else which they did (I think I was scary hungry by this point so they didn't dare ignore me!).
Finally at 1.30pm Mr Agarwar strolled in and looked totally baffled, as if he'd just woken up and been told he had to go into surgery, which was a little concerning as obviously I knew exactly what he was meant to be doing and felt a little nervous by his lack of conviction.

Just before 2pm I was rolled around to Theatre room 4 where the lights in the Anaesthetic room had blown (you can never get a good electrician when you need one eh)
So they moved me to Anaesthetic room 2 where the lights were working to put me under then back to Theatre room 4 - blimey what a palaver.

Well that's obviously all I remember up to as the rest I was thankfully fully unconcious for!

Thursday, 6 May 2010

The Pre Op Assessment

Just had my pre-op assessment.

All is good to go for Monday. I've got to be there at 7am and will be going into Theatre at approx 8.30am for 5 1/2 -6 hours.

When I come out of Theatre I will be in ward 11b at Lister Hospital for anyone that wishes to come and visit, visting times are 2-8pm every day.

Subject to availability I will be getting a private side room as I need it to be really warm to allow the skin graft to take and I will also have a PCA pump (patient Controlled Analgesia) a little button that will release Morphine into my arm that I get to control (so don't expect any sense out of me if you do come in to see me!)

I also had my official before photos taken today which is quite exciting!!

Its all feeling very real now xx

To Freeze or not to freeze?

The chances of me still being able to conceive another child after Chemo is relatively high 70/30% however because we were so sure we wanted another child we wanted to look into the options available to us to increase our chances.

So I went to see a man called Dr Banagee at Lister yesterday in the Gynae ward in regards to freezing my eggs.
(It should be mentioned at this point that although in my last post I put that I had to wait another 2 years following my Herceptin treatment at the time of meeting with this Doctor I was under the impression it was only a couple of months we needed to wait).

The options available to us are
1 - freezing my eggs - apparently very old school and has a very low sucess rate of actually producing babies at the end of it.

2 - IVF - having my eggs and Jay's sperm clinically fertilised and the embryo being frozen. A much higher sucess rate but a bit more difficult in the lead up for me.

Because we already have a child the NHS will not fund either option for us. It would be a cost in the region of £5k (The money isn't an issue at this stage as my insurance cheque is still in the bank, however it starts to become a different question when we are now talking about 4 years further down the line).

Its true I have always wanted 2 children, but anyone that knows me at all knows I ALWAYS said I wanted them close together. Amber will be nearing on 7 by the time I give birth to the next baby (and thats if I fall straight away) this is not my idea of close (or practical).

Jay and I had some very long and deep conversations last night and have decided that we do not want to put my body through any more treatments at this stage and if at the end of my treatment we still feel that we want a child we are happy to leave that decision up to nature. Yes it's not perfect but I've started to realise through all of this that I can't control everything and once in a while you just need to take it as it comes.

This is a huge decision and a very emotional one to make but we both feel it is the right one for us. We know there will be some friends and family members that will think we have made the wrong decision but we ask that you respect this as something that only we can decide.

This is not a flat out we're not having any more children moment, this is a lets see what happens, we very much doubt that we will want another child that much further down the line and don't feel it is necessary to go through a voluntarily stressful circle of events after everything I will already have been through.

I appreciate this post is extremely personal and apologies if I have given more information that you need or want from this blog. However I have found this the hardest entry to write and feel better for getting it out onto the page.

x