Shit....

I'm such a bad blogger. Must try harder.

Firstly I must wish all of you gorgeous wonderful followers a very Happy New Year. I know a tad late but got there in the end. Christmas and New Year was lovely even though I had a stint in hospital just prior and was released on Christmas Eve. The best part was of course having my most wonderful brother and sister-in-law over from Oz. Such precious times were to be had and make you treasure them even more.

Unfortunately the fun was not to last and I was readmitted to hospital on 2nd January. The law of crap luck is still with me and the endocarditis is back. Apparently this almost never happens. Just me then! Treatment = 6 weeks of antibiotics. Ah but they have to be iv so means staying in hospital for that time. Thankfully I'm back at The London Clinic so am in exceptional hands.

Great start to the year eh?  Well apparently that still isn't enough for me to be getting on with.  My body decided that my ureteric stent should block resulting in the need for a Nephrostomy (yes kids my right kidney is peeing out of my back!). And if you are still keeping up, then a small bowel blockage decided to try and kill me (eek). A quiet sunday evening resulted in surgery which "saved my life". Quite a sobering thought really. I am now minus another 2 feet of small bowel but alas have gained a colostomy.

Yes folks I am now officially a bag lady.

So another chapter begins. It's a lot to take in. A lot to deal with. A new lifestyle and a new body image. I am now too posh to poo! Weird thought that! I have a lovely stoma lady Becky. She makes it all matter of fact and so easy to get on with. It's a good job I am not squeamish and I am now getting very familiar with my bodily ablutions. How this all will all work with my wardrobe is another matter but seeing as currently I am sporting the arse out gowns then it doesn't matter. A steep learning curve ahead I feel.

As for what now. Well potentially another op - even bigger than this one. An exenteration. It's my best chance I think at getting rid of this bastard sitting in my pelvis. The radio has curbed it from wandering off so we want to get it gone. But that is another time. Firstly I have to get over this. Drs Tummy and buddies are now filling me with calorie shakes to get my weight up. The alternative being a feeding tube - re no!

Meanwhile in the background of all of this has been my amazing husband. I can't begin to imagine what it has been like for him to watch me in pain and distress. He is truly incredible and I can't thank him enough. He is my world and there are no words.

Also I mustn't forget my family and friends who are on this hideous roller coaster with me. I hate that we are doing this together but together we are and for that I am truly thankful.

Anyway, I best nip off for another dash up the corridor. Keeps the physios happy and helps to build up my weedy legs!

I shall keep you posted. Thanks for reading.

How are you feeling?

This is how I am greeted now. No "How are you?" Or "How is work?"  I have become all about the illness. It's as if all other aspects of my life don't matter any more. Here I am trying to put the evilness back in the corner again and everyone else is dragging it back out so it can ruin the party once more.

Ironically I have a standard answer which was really emphasised at my work Christmas do this week. I was greeted by a colleague with the standard "How are you feeling?"  And I responded with my standard "Not too bad thanks". He then asked if that was true or just my standard response. At this point a very close work mate asked the same and gave me a massive hug. And my response then was "Shit", to which the first guy laughed and said "ah the real answer."

It got me thinking. Are people asking because they genuinely want to know or because they feel they should ask? And why do I tend to give my standard reply? Why do I not tell the truth? Is it to protect others from my reality, or not to admit that this is difficult and that I am struggling.

The truth is I don't know the answers to these questions. But what I do know is that there is more to me than this evil disease. Please don't forget me.

10 days

....to go until I get to go the happiest place -  and collect the fabulous Millers.

Yes, this time in 10 days my gorgeous brother will be here, and just thinking about it brings tears to my eyes.

There is some pretty amazing stuff in amongst the crap.

The Force is Strong in this One

.....well sometimes. And sometimes not.

Another meltdown occurred in chemo this week as I was running a temperature as well as the low Hb (7.4 for those that wish to join the guessing game). So 3 units ordered and if my temperature spikes then I will stay in for iv antibiotics. Hence tears and bad language.

I've been back at work 2 weeks and trying to have a life that it not totally ruled by this evilness but it seems that isn't so easy. I think the fact that I have been ill since June and there has been no respite, I have just had enough. I know another stay in hospital isn't the end of the world but having to cancel stuff and be unreliable really gets me down.

So here I am on unit 3 and the temp is wavering. However the TV is keeping me amused as I'm watching Return of the Jedi. For those that don't know the Star Wars theme was what I walked down the aisle to on the most amazing day of my life. The best part was that Darrell didn't know this sneaky plan that was cooked up on my Hen Weekend. He had the most enormous smile on his face. That was a very good day. 

Holiday = Over

Why can't things just be straight forward? Why can't I just have a 2 week holiday and then come home and go back to work?

Because my life is simply not like that. And sometimes it pisses me off.

The last few days of the holiday I was getting increasingly more breathless and more frustrated with how unfit I felt. So I made a plan to get my bloods checked when we got back, so if I needed a transfusion that could be done on saturday and we still had sunday to enjoy.

One crazy drive later and a walk to oncology (without vomiting or passing out) I am told my Hb is 6.5. Fuck. It has become a slightly odd game that Darrell and I play - called, very imaginatively "guess the Hb level". I have the slight advantage as I know how shit (or not) I feel but hey, sometimes I'm allowed a head start. So I went for 7 - not bad eh?!

However 6.5 is very nearest the lowest I've ever been (6.4) and not good as my last transfusion was 2 weeks ago. Anyway - plan was for 4 units, 2 each day of the weekend. Plan royally buggered.

I have to admit that at this point I sat and cried. Not ideal in the Oncology department but sometimes I have just had enough. Sometimes I just want a break. It's bad enough needing transfusions virtually every fortnight but to bugger up an entire weekend is crap. I want to be normal. I want to be able to plan to return to work on monday, without something coming along that threatens that. Let's be honest - I just don't want to have cancer and all the shit that goes with it. Mind you, who does?

So 3 units down, last one tomorrow. Lovely Dr Evil came in and asked the nurses to give the 3rd unit tonight so I can get home as soon as possible tomorrow. Is it inappropriate to want to hug him?



Beach Hut hot chocolate

Spent the evening watching the usual saturday night Strictly and X Factor and sorting my holiday pics. Here are a couple just so I can remember what it was like to feel slightly normal for a while.

Reflections



Unexpected tears

Sometimes things are ticking along and suddenly BAM. Something happens, or is said or read that totally floors me. Leaves me overwhelmed with emotion - be that sadness or anger.

This evening that happened. A quiet mooch through Facebook announced the birth of an old school friend's daughter. Now that in itself is ok - I'm somehow getting used to the gut wrenching heart break that goes with every pregnancy and new born. Putting my grief aside, I'm always thrilled.

No, what got me was her name.

Harriet.

The name of the daughter I will never have.

How does that get any easier? It doesn't.

This is the life

Just a quick hello from The Land of the Pasty. I am currently sitting on a very squishy sofa with sun streaming through the windows overlooking the beautiful beach of Watergate Bay.

I am relaxed, eating too much and trying to ignore the evilness. This holiday is well overdue, well needed and providing some respite for the soul. For both of us.

I love it here. I may never leave.