Monday, 24 December 2007

I should be sleeping

Well folks, I'm home. I have been here since Friday but the t'internet was down so I couldn't get online to do the blog (how frustrating!).
The operation was successful, the full title of it was Right Total Mastectomy and Right Axilla Node Clearance +/- LD Flap.
I went in EARLY on the Tuesday with Mum and Ash. We waited in the arrivals lounge with a load of old people and then were taken through to the ward. I didn't get a side room in the end (boo!) but I was in a bay with 4 other ladies. I was near the door which I liked and there was no-one opposite me so when the curtains were round it was quite private, also I could see the nurses at the desk and hear what they were talking about!

I got changed into a lovely hospital gown (you know the ones I mean!), and some very sexy surgical stockings (knee high only, not thigh high) and even better - some paper knickers! It was the whole experience! I saw a couple of doctors, did consent forms and Mr D came and drew all over my boob (where he wanted to make incisions etc). Surgeons always mark their patients before they go into surgery as it is easier to mark someone when they are conscious and can move around. Especially with lumps and bumps, they need to be able to poke you and stuff. Anyway, with that done we just waited around, I wasn't first to go in in the end as they were waiting for my breast implant to arrive! Somehow Ashley managed to blag a cup of tea from the domestic (and said hello to most of the staff as he knew them all).
Tommy, one of the theatre porters (and someone else that Ash knew) came to get me about ten to ten, I kissed Mum goodbye and it was off to theatre. Picture it, there's me sitting in bed, lovely and cosy and warm, expecting to be pushed to theatre when Tommy goes 'have you got slippers?'. 'Yes, why?', 'because there's only me and I can't push the bed on my own so you'll have to walk and we'll get the bed later'. The cheek of it!!! The last lady was pushed into theatre, why not me!? I moaned a bit cos I was REALLY warm and cosy and so in the end Tommy got Ash to help push (well, it's his field of work anyway!). So the boys pushed me round to the theatres (a weird experience when you're used to walking WITH someone).

The anaesthetic room was cold but had a brilliant view over the houses and down the hill. It was a beautiful sunny morning as well. Dr Martin the anaesthetist was lovely as was Dawn the ODP (Operating Department Practitioner - anaesthetic assistant). It was interesting chatting to Dawn as she will be working at the Day Surgery in January! Small world!

I went off to sleep pretty quickly, it is a lovely experience having an anesthetic, there was a slight sting as they put the drugs in but then the lovely sensation of falling asleep. I'd recommend it to anyone!

I woke up at 4:15 on the ward, I vaguely remember being moved from recovery to the ward but then I went right back to sleep. In fact, Tuesday was probably the best day as I was totally drugged up with ALOT of morphine and so I was pain free and a bit high. One of the side effects of morphine is euphoria, it was great. Mum, Ash, Ophelia and my brother were all there, I kind of had conversations with them although it was difficult with an oxygen mask on.

*UPDATE*UPDATE*UPDATE*
OK - I was writing this on Christmas Eve but got distracted with, like Christmas, you know. After the big day I wasn't too well, felt a little bit rough. I woke up on New Year's Eve in agony early in the morning so I got taken to A&E by ambulance. I had an infection, my drain was full of gook (i.e. pus, blood, fluid). The doctors made the decision to operate to remove the implant they had put in at the previous surgery.
So, once more into the operating theatre. A much quicker op this time and I was on a surgical ward at the PRUH. I had to stay in a couple of days and they let me out yesterday. STILL have a drain and am in pain and have restricted movement etc etc but I do feel a lot better. The real downer about being in hospital was that NYE is Ash's birthday so he spent the entire day with me, bit crap for him but I will make it up to him next year.

Now I'm home and just bored and annoyed that I can't do all the things I want to properly. I will blog all this later on I expect. For now I'm going to lie in bed and watch TV.
Lots of love to you all as always
Liz
xxx

Monday, 17 December 2007

Tomorrow and tomorrow and tomorrow

Hello everyone,

Well, one last blog before the surgery. Just to clarify as lots of people have asked me - I do have someone with me on Christmas Eve, I kind of forgot to mention that I had sorted it out. My mum was going to come over but Ash is not going out now so he will be here and I think a couple of people are going to pop in so it should be a lovely relaxed evening. DVDs, maybe a glass of wine and some nibbles. Anyway - IT'S OK!

I have had a weird weekend as I have been super-busy seeing people and trying to get ready. I have managed to do lots of cleaning and stuff in the flat and it is looking pretty good. My room is ready for my return with the TV, DVD player and Sky box (which still needs plugging in).
Today Sarah visited me in the morning (caff brekkie and DVD), Gemma and Phoebe (age 2 and 1 month) came over for a cuppa and both my sisters dropped in so it's been busy. Probably a good thing because after Sarah left and I was alone for about 5 minutes I started panicking a bit. Luckily Ash was home from work earlier than I thought so I haven't really been alone today.

There were a couple of things I wanted to say in this blog. One is, the other day at work I met another patient of Mr D who had a mastectomy and tummy tuck at the same time. She was in the DSU as a patient and she kindly let me see her scars and chatted to me about the whole experience. I had seen her pictures in the book the Breast Care Nurse has of people post-op so I recognised her from her tummy tuck scar as it is unusual to have the two procedures. Anyway, they used some of the skin from the tummy tuck to do the graft on her boob and she said it was a bit weird because sometimes she gets hairs growing on her boob. Now if you know where they do a tummy tuck you will know that this means that the hairs that are growing are in fact PUBES!!!!!! She was lovely and said that I should take her number from her notes and give her a call if I needed to.

The other thing I wanted to write, and this is a bit gross, is that if you squeeze in the right place you can feel the tumour. It is weird because you can sort of feel how big it is. And it aint small. I have taken a picture of my boobs but as I can't find the data cable for my digital camera I will post it up post op when I have found it. (This is the problem with tidying up - now I can't find anything. i probably put it in a 'sensible' place!)

So now all that remains is a few bits and bobs around the flat to sort out (Ophelia and Ash have their instructions!) and to pack a bag. It is such a weird feeling to be going into hospital (it's not something I've done before). It's a little like going on holiday as I want to get the flat sorted and a bag packed but the weirdness is that I am only going to be down the road (literally) and I can't leave if I want to!

I might just add at the moment that Ash and Ophelia are in my room discussing putting up my curtains and are behind me now while I am writing this. In fact they are both goading me because I can't whistle and they can so they like to take the mickey every now and then to remind me that I am still me and not to feel too sorry for myself. Things are mostly quite normal in the flat which I am eternally grateful for.

OK, I'm going to sign off now as I am getting tired fingers (and did I mention that I need to pack!!!!!).

Thank you all for your messages today (8-9pm was text time).

Lots of love
Liz
xxx

Thursday, 13 December 2007

Last Day At Work

Hi guys,

Well, here we are again, a week later. Lots has happened and when it does I always try and make a mental note to remember it for my blog. Of course, now I'm actually sitting in front of the computer I can't remember a thing!

So, wow, what HAVE I done this week???? Actually the first thing that comes to mind is that I managed to have a really BIG cry (and it felt good). Ash and I were discussing Christmas arrangements and I realised that I may be alone on Christmas Eve night and therefore Christmas morning. Not good. Anyway, that set me off and I was away. Bless him, Ash is so good. He just lets me get on with it. Let's face it, there are no words that are going to make this situation any better.

What I have had this week are a couple of days where I feel like I haven't had cancer. Ash and I spent last Saturday with some friends of mine who have kids and the focus was on the little (very little) ones all the time, you know, making sure they didn't hurt themselves or each other!
Then on Tuesday we went to Ikea with another friend of mine who has recently separated from her partner so yet again, the focus was not on me and it was lovely. I'm not saying 'don't pay attention to me'. Quite frankly I am loving all the messages and support etc etc but sometimes it's nice to forget that I have a life-threatening disease.

Apart from anything else, seeing people has taken my mind off the surgery which is really looming large now and is scaring me. It's not the actual surgery that's a problem, I have total faith in the people who will be looking after me (although I don't want to be completely monged out afterwards... well maybe a little bit!). It's the scars and the fact that I will have restricted movement in my right arm for a while. Just a note for those who don't know everything about breast cancer; (shame on you all if you haven't been researching tut tut! :) ) when you take lymph nodes from the axilla (the polite word for armpit), you increase the risk of infection into the arm (because the lymph is part of your immune system) and you also increase your risk of lymphoedema which is when you get swelling in the armpit where fluid gathers. PLEASE do not ask me to explain why or blah blah blah as I really do not know. OK so I just looked on the NHS website and you get lymphoedema because fluid that would normally travel through your body in the lymph system can't. Because you don't got none. OK? Anyway, lympoedema is like having a tennis ball in your armpit and it has to be drained surgically most of the time (although I think there are alternative medicine methods). So I will have to be careful after the surgery but I don't know all the advice yet as I think they are waiting until afterwards to tell me about it. I will also have a massive scar and it takes time to regain full movement anywhere you've had surgery because you have to protect the stitches from ripping... mmm what a lovely image!

Right, so I was talking about being scared - yeah, well I am, naturally. I haven't ever had major surgery before. I have found out through ways and means at work that I am going to be first on the list which means that they will start operating at about 08:30 - 09:00. I am mostly grateful for this because pre-surgery you have to starve and at least I can do most of my starving overnight when I will be asleep. It might be a Night Nurse night that night. There is no way I am going to sleep.

The other thing that's bugging me about the surgery is that because I am having an implant (yay fake boobie!), I will have to lie on my back to sleep for a few weeks afterwards. That is not normal for me and I tend to snore when I lie on my back - oops, sorry Ash! The reason is because (and I asked Mr D about this) if you lie on your side the implant can move. So he said to me that unless I want a breast on my back I will have to lie on my side!!!! That's enough information for me!

I have been in to work all this week, in between going to a few appointments. I had a pre-operative assessment at Orpington Hospital (which is the same thing I do to people that come into the Day Surgery). I had to have bloods taken (to give them an idea of how I am generally), be weighed and measured (no comment!) and have an ECG (Electrocardiogram) which looks at how well your heart works. It's weird because I have done countless ECGs and having one done on you is a totally different experience (it did involve getting the girls out again as they have to stick things to your chest and around your heart - if I see any of you non-nursey types and you want me to explain how an ECG works I will happily do so!).

Today was the last day at work. It wasn't really a normal day as it was an Academic Half Day which means we didn't have any patients in, we have a staff meeting and do some training. There weren't that many staff in and I didn't see the point in doing any training as I am not going to be there for a good couple of months so my manager let me go home early. I was standing at my locker, having a mini-clear out and I got all upset thinking that I wasn't going to be back for such a long time. A couple of my good friends were there today and they were brilliant but today has been a 'Careful- Fragile' sort of a day. It started off with me getting a message from my Dad this morning through Facebook so I was crying at half seven this morning. Not a great start to the day.

I saw a doctor in Occupational Health today who has written a referral letter for me to have some extended sick pay. Let's hope that all goes ahead OK. It is in the hands of my managers now. I will update all of you as soon as I know. It's one of the small battles in part of the bigger war. The weird thing about cancer is that it is just getting from one bit to the next so you can never really see the whole picture. I have literally NO idea what next year is going to be like and I don't like that! As many of you know, I like to be organised and the lack of things in my diary is a source of consternation to me!

I am really going to miss being at work. Just the people and having a laugh and the in-jokes and stuff. I'm scared that when I go back things will have changed. They change all the time in that place anyway. There will be some staff gone, some new people, some new procedures and things like that. Whatever happens, it won't be the same. I don't like the feeling that I will be missing out.

Okay, I'm going to wrap this one up pretty soon as it is long. I won't be able to do a blog next week as I will be in hospital. I'll try and do one Sunday or Monday before I go in but, just so that you all know, I do have a VERY busy social calendar this weekend and may not get time.

As always, keep messaging, just because I don't reply doesn't mean that I don't read them. I do read ALL of them and am grateful to everyone for their support. I'll maybe post up a note soon about contact whilst I am out of action.

Love to you all (especially those people who complimented my writing skills, which was almost all of you!)
Liz
xxxxxxxxxxx

Thursday, 6 December 2007

Some Good News

Hello everyone,

Well after a week of not-very-much-happening, I had my next appointment with the consultant yesterday.

To fill you in on the story so far... I have had to wait two weeks to see Mr D again and in that time I have mostly been expending my energy on trying to sort out my sick pay at work and arranging my flat ready for me to slob/recuperate post-surgery. I am only entitled to one month full pay sick leave at work then two months half pay. As most of you know I am a nurse now so the pay aint great anyway but I can't really afford not to work. Mostly the NHS is an easy ride if you are sick as after about five years service you get six months full pay, six months half pay. Sweet if all you have are a few colds and you elect to have some non-essential surgery which gets you six weeks off.
As I have been officially employed by the Trust for less than one year I am not getting much. It is a bit of a pisser. Mostly when people at work come and say 'I didn't expect to see you here, why don't you just have a day off?' and I have to say (through gritted teeth) 'I CAN'T have a day off"! I am pretty much going to have to work up until the day I go in for surgery and I am VERY annoyed about this. Given half the chance I would have stopped working the day I got my diagnosis and not gone back until I really had to. When I think about it more, I could have had this time to organise an osteopath appointment (my back is giving me gip again) and perhaps arranged some counselling and stuff like that. Anyway, that's the way the cookie crumbles and it's shit but since there's not a lot I can do about it I am just going to make the best of it. There are benefits to being at work of course, I have friends there and I am not doing a lot of actual 'work' as I am supernumerary so I can float around and help people without the stress of having to look after my own patients.
The other thing to mention is that my managers have been BRILLIANT and are really trying to get me some extra support as there is some leeway for managers to grant extra sick leave pay. It is a difficult time for the Trust, they are in deep financial trouble so for that reason I might not get anything. Bad timing on my part!

So... the appointment... it was to confirm my date for surgery and to give me the results of my various scans and tests. Last week had been an OK week, I am able to get through the days OK but the nights are difficult and so it is mainly Ashley that gets me crying all over him. Things tend to hit me at very inappropriate moments. For example, during sex when I am naked and I can't help thinking that I won't have my boobs for much longer, and will I even want to have sex after the surgery, and will Ash still want to sleep with me, and then I remember that episode of Trinny and Susannah when that woman who'd had a mastectomy showed her husband her scar for the first time in like 10 years and they were behind the screen and everyone was crying as he just said he loved her no matter what she looked like. I was in tears over that episode! It's making me well up even now just thinking about it. The fact that she was so ashamed of her own body but he didn't care he loved her all along. That's not something I worry about with Ashley. He has said (and had to repeat himself) that he doesn't love me for my boobs, it is what goes on in my head and all the other things about me. (What on earth did I do to deserve him??).
Anyway, to get back to the point, these are the things I worry about. My boobs (as I have probably said) are rather an integral part of my anatomy and have shaped my personality too. For someone who's nickname is Tits McGee - boobs are important!

I am totally going off on a tangent here, this is what happens when you can touch type! The point is that I had been having an OK week, this week has been a bit harder as I have been thinking about the results of the scans and scared that Mr D was going to say I had a Grade 4 tumour that had metastasised and that there was nothing they could do and that I was going to die. It's dramatic but that's what happens - however positive you try and be your mind always goes to the dark side. Especially when you are alone and it's quiet (not that that has happened a lot recently).
Tuesday was a bad day at work as I was totally distracted and got a bit upset, especially as everyone was talking about Christmas and I know I am going to have a crap Christmas this year. I was allowed to go home early which was nice but I'd have rather not been there at all.
On Wednesday Ash and I did some bits and bobs around the house, I got quite a bit done that I needed to. The appointment wasn't until 4pm so I had lots of time to be moody and stroppy with Ash. Luckily for me he is a patient man with a good sense of humour! When we got to the Chartwell Unit they said they were running an hour and a half behind so we got a coffee and a sandwich in the canteen and then went back to wait. When you are waiting for an appointment like that the waiting is EXCRUCIATING! I was so nervous and couldn't stop jiggling around. I read every sign on the walls at least 25 times and read the whole of heat magazine! It got to the point where I almost fell asleep as I was shattered.

When they call you, what happens is that you go into another corridor and wait for another five minutes. The Breast Care Nurse, Jane, came out and said 'don't worry, all the scans were clear'. I had to just let out a little cry at that point because I had been so stressed without really realizing it. So at least when Mr D called me in I didn't cry in front of him. That would have been embarrassing, I'm not sure why but I think if I lose it in the actual appointment I won't take in anything he's telling me.

What he did tell me was that all the scans were clear (Phew!), and that I would come in for surgery on the 18th of December to Orpington. The upshot of it is that I will probably be in for about 3-4 days, he is going to have to do pretty drastic surgery as he thinks the tumour could be as big as 9-10cm. He is going to take the lower portion of my right breast so I will have a sort of sideways leaf shaped going across the top of the nipple (think along the tan line), side to side and underneath in the crease. He is going to take some skin and muscle from my back to do the reconstruction and he is going to put in a silicon implant (yay fake boobie!). He will take the nipple away and so I will be nipple-less for a few months. He will finish this off later after all the chemo and everything.
He showed me a diagram of what he wants to do and it is pretty radical. I am pretty scared but I know where the scars will be now so at least now I can get used to that. On the left breast there will be an anchor-like scar just like if you have a regular reduction. This will, of course, be done at a later date. If I can work out how to do it I will try and draw some diagrams and post them up here. I am also planning to take some photos and post them up so for the squeamish or people that know me too well and don't want to see my tits I will pre-warn you when I do it!

I'd better sign off as I have been rambling now for ages and you lot will be bored of reading this by now. I may have to do some midweek blogs I feel!

I'm sure there are some more things I wanted to tell you all but they will have to wait for next week's exciting installment.... I know you can't wait!

Again thanks to all of you for your messages of support, cards, emails, phone calls and texts (sorry that I can't reply to you all individually), it really means a lot to me that people bother and please keep it up!

Lots of love
Liz
xxx