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.

4 sleeps

.........until we go to the Land of the Pasty for 2 weeks and I can't wait.

It seems a bit daft to need a holiday after having 3 months off work but it's been what can only be described, quite frankly, as a shitty three months. We haven't had a holiday since January so are in desperate need. And it's been FAR too long since we visited our spiritual home.

My mind, body and soul can't wait.

Freedom

10 days. The longest that I have been out of hospital since July. How crazy is that?

I was finally released last saturday evening after a final stress of making sure my temperature was normal all day. Also on the understanding that I have to keep a temperature chart as if an infection was going to raise its ugly head, it would happen now that the antibiotics have finished. So twice daily I have to check that I'm not burning up again - remembering to not do it straight after a cuppa! And without wishing to tempt fate, so far so good.

My lovely cardiothoracic medic warned me that being home would be much harder than I anticipated. I have essentially existed in one room for the last 12 weeks so living in a house is a big deal. And man he wasn't wrong. Bit of a shock to the system to have to make a cup of tea! I am used to asking some lovely person to sort all my needs. However - I am managing and being a good patient and not doing "too much" - whatever that means!

Today I have taken that to the letter and have spent the day in my PJs on the sofa, under the Quilt of Love! I could get used to this!



Super soft PJs and UGG slippers from Oz - chosen by my lovely brother

You couldn't make it up!

Well the good news is that the 5 weeks of radiotherapy is done and has actually gone quite well. All the pain has gone and I no longer look like I ate all the pies! The most recent CT shows the tumour resembling swiss cheese! Weirdly the frying of the evilness continues for another couple of months after finishing actual treatment so we can't judge the full effect. Everyone has been pleased with how I've done - even my skin hasn't suffered too badly. I just have a perfect square peeling sunburn on my bum! Very glamorous. The facilities are amazing and treatment each day only took about 15 minutes.


Not very comfortable at all!

The radiotherapy room



Being lined up and positioned

My View lying on the table

And the incarceration hasn't been too bad actually. It's amazing how many people pass through London or visit London, so I have been really lucky to have had loads of visitors - some old friends that I haven't seen in many years too. Weird how there are some good things to come out of the evilness. My amazing work colleagues got me some vouchers for here so I could have some pampering whilst in hospital. It was such a lovely thought and very much appreciated. 

So I have actually been quite busy hence being rubbish at blogging!

Now it all seems rather positive doesn't it? Well, those of you that know me, may know that I tend not to expect good news, and this time is no different! About 3 weeks into evilness frying, I started to spike temperatures. After many blood cultures, bodily fluid samples and tests, it was eventually discovered that I had Endocardititis. A big lump of yuk inside my heart. Arse. I mean seriously, you couldn't make this up. So 2 more consultants to add to my collection - heart surgeon and heart medic. Onto a shed load of iv antibiotics to try and get this thing to bugger off - all the while being warned that it could break off and travel to my lungs. This would be a very bad thing. 

Much head scratching and phone calling and general discussion resulted in the antibiotics not really working and the lump staying the same which meant that the nice surgeon that I met (just in case, but you won't need me) got to step up. 

So I had my final frying on monday and then tuesday dawn was transferred to another hospital in london - The Wellington. This was necessary as they have bypass there - holy crap as I soon realised that we were talking MAJOR surgery here. Cracking my chest and bypass etc - the stuff of ER and Holby City. Just what is recommended after 5 weeks of radiotherapy when your body is in tip top form!

It must be said, the goodbye at the theatre door when you are heading into a thoracotomy is terrifying. I am not scared of operations etc but this was one time when the thought was there that I may not wake up. Fuck.


Back in the ward with a central line sewn to my face!

But wake up I did and for once I had GOOD NEWS. There had been musings that maybe this lump of yuk was actually a little gang of yuk and evilness. It's always there in my mind so I wasn't exactly surprised when the seed was sown.

But NO. For once the evilness didn't get to join in the fun and it was just yuk. O.M.G. and all other such shock related type exclamations. After all the shite I finally get a little bit of good news. I know that endocardititis is a big deal and I need 2 more weeks of iv antibiotics but evilness of the heart would have been very bad indeed. Very bad.

Yum!

And in the midst of all of this madness my amazing internet weirdies have been there every step of the way. Not content with gorgeous flowers, and yummy cupcakes, they blew me away with a hamper of home made goodies and really thoughtful gifts. There was a Cath Kidston explosion and a beautiful necklace from Tiffany. I was stunned. It is truly incredible that people that are to a degree, strangers, can do such an incredibly thoughtful thing. I am so blessed and honoured to be part of the community. Thank you never seems enough.