Battle of the brains

I've started this post a million times and always run out of words. I've started it this way for at least the last half dozen times. Sometimes I've got to here and stopped under a flood of tears, while other times I've got almost to the end only to be interrupted by my crazy toddler princess or her whirlwind brother, and then I've just never got around to hitting 'publish post'.

But they're both tucked up in bed, the rest of the family are dispersed around the house, and I've found some quiet time to type. I'm all cried out, no more tears left - so there's no threat of a flood! So here goes.

I don't know how long I'm going to be able to keep typing on my blog. I'm not sure there are many people reading it anyway, but it's kinda nice for myself just to get things down. A little bit like a diary.

Sorry, I digress.

I have news. It's not good news. So I'll just hit y'all with it - it's in my brain now. My bone cancer has gone from bone, to lung, to lymph node, to brain. Not necessarily in that order, of course - but it's slowly but surely working its way through my body.

I've got the headaches, I've got the dizziness, I've had the nausea and the actual throwing up. I've lost a lot of feeling down my right-hand side and have currently given up on even trying to walk. I've started to get slight blurring of vision, which adds to the headaches. I'm good for nothing most mornings until the pain in my head has eased and, on some days, the sickness has passed. Last time I was throwing up in the mornings it was because I was pregnant!

I'm getting frustrated with myself now. I'm bored of not being able to respond to "how are you?" with "I'm great, thanks, how are you?". Well, I could - but I'd be lying. I'm boring myself to tears with all my ailments and aches and pains. My little step-son is so confused about why mummy can't sit on the carpet for too long and play cars with him. He cries when I have to be lifted back up to the sofa - he wants to play some more, and so does mummy! It's not fair that I can't.

But on the other hand, he loves playing doctor. He's so sweet and caring, rubbing my fuzzy head when I'm crying in pain and bringing me a blanket when I fall asleep in the evenings, as I often do. There have been numerous times now that I've woken up with a glo-worm teddy pushed up against my chest thanks to him. I'm so lucky to have such a caring little man.

My little lady is younger than her brother and doesn't understand the same, but she's caring in her own way. Her hugs with mummy always last that little bit longer, and not always because I'm clinging onto her! I'm terrified that each hug will be my last one with her. I so dearly want her to remember how my arms feel around her, but I'm not sure she will... not when the last doctor I saw was predicting I have only 4-6 months left with my family.

Since getting this news, I've been trying to spend some time writing for the children. But where do you start? "Mummy loves you" - yes, of course I've written that. "Mummy is so proud of you" - goes without saying, but it's been written. "Mummy didn't want to leave you" - I'm making sure that's written into almost every line. But how do you even begin to tell your children what they mean to you? How can you make your own flesh and blood (or not, in my step-son's case, but might as well be) understand the intense feelings you have for them, and have had since the day they were born? There's just no way. I've done what I've been able to though.

And, of course, I have started other letters. For my dad I could write a book, but I've started with a few notes. Baby girl's daddy - that's been a tough one to write. It's done though. His is the only one that's complete. There's one that's been fairly easy to begin, but I'm not sure how it's going to end. The reason it's been so easy to begin, is because the start of it isn't much different to things I tell this person every day. And I know how it should end, but it's not easy. I'll get that one finished though, it's important.

I have a few other writings to begin, one or two more "in the pipeline", and one that breaks my heart... when I imagine him reading it... it's just brought tears to my eyes just thinking about him. My family and closest friends have done more for me than I ever could have asked, but this one particular person... I can't even begin to explain all of the sacrifices he's made for me. It's quite amazing. I find it embarrassing and humbling, all at the same time. I'm so thankful... I don't think I can ever repay him. I hope he understands what he means to me.

Anyway, I think I'm rambling quite a bit. I meant to tell you about the next step with treatment and how they're going to try to extend the predicted 4-6 months, but I'm tired now and this has taken me long enough to write. I'll have to come back another time and fill you all in.

Heartbreaker

This weekend was meant to be a bit of father/daughter bonding time down in Norfolk for me and my pops. Bonding, it certainly was... I don't think we've ever been closer or more similar than these past couple of days.

Saturday morning, dad had a heart attack. He's fine, he's going to be ok. But it was scary. We were on our own, just back to the cottage we were staying in after having viewed one house (dad's looking at investing in a property on the Norfolk coast). And it just happened. Dad had been feeling a bit off-colour all morning, and said he'd had a restless night, but he put it down to the time of year, and maybe he was picking up a bit of my baby girl's bug that she had last week.

I think I did everything right when it happened. I was terrified, but I stayed as calm as possible, called for an ambulance and followed the 999 operator's directions for how to help pops. The ambulance arrived really quickly, in hindsight, but it felt like an eternity.

I really thought my dad was going to die right in front of my eyes. Scared isn't the word.

It turns out it was only a "mild" heart attack (what a drama queen!), so dad's doing great. He's still in hospital in King's Lynn, and his partner is with him now - I called her as soon as we'd got to the hospital. It was only then that I cried... well, sobbed. J brought her straight over and stayed with us Saturday night (thank god - I was all over the place by then, and exhausted!), and then J and I came home last night and dad's other half is staying in a bed and breakfast near the hospital as long as dad's being kept prisoner ;)

Yesterday dad got really upset and was apologising to me and anyone who would listen... just like I do when I'm in hospital. I appreciate how annoying that is now! And he's climbing the walls to get out... we're more similar than I ever gave credit for.

So that was my weekend. It didn't quite go to plan, and I'm sure pops has a little road to recovery ahead, but he's doing fine and he's going to be just great.

Oh, and my radiotherapy treatment starts today - wish me luck!

The norm

I think I've forgotten what it's like to be normal.

Most people's response to that statement will be something like "...whatever normal is...", or "...no such thing as normal...", and I guess they're right. My response to that is that "this" - everything that's going on in my life now - isn't how I remember normal life being. Though I suppose it's becoming my norm now.

What's prompted me to feel like this? Someone has talked to me recently like I'm "normal". Everyone tiptoes around me at the moment. They're careful not to upset me; they go out of their way to keep me calm, not provoke an argument so I don't get upset; and I'm pretty certain that their poor little toes must be hurting from all the eggshells they walk on!

But just recently, these past couple of days, someone pretty close has taken a different approach with something not related to the illness. They've given it to me straight, just talked to me as they would have done 14 months ago.

I think I appreciate it. But, to be honest, I've become so used to being talked to "nicely" that it's come as a bit of a shock and I'm not quite sure how to handle it!

When something that isn't your norm becomes your norm, how do you handle the abnormal... or how do you ask somebody to help you deal with it, because it's probably their norm!

I'm confusing matters now.

I'd gotten [sorry, R - that word!] used to the nicey-nice treatment and was shocked by the bluntness of this person. Shocked into silence, in fact. Which of course came across as being "A Silence". It wasn't meant like that. I'm just not used to people treating me like "any other person" anymore.

I can't decide if that's a good thing or a bad thing. I know it's probably my own doing, because sometimes even the most nicely asked question can result in me biting someone's head off.

I need to get out of the mindset that I can use Cancer as my excuse for being sharp-tongued.

Anyway, aside from all the abnormality, radiotherapy starts on Monday. I've attended all my pre-radio hospital appointments, so I'm ready to be zapped! I hope I respond well to some musical notes being played through me... I wonder if I get to choose which radio station they tune me in to? I am joking... I know radiotherapy isn't really anything to do with music, but please allow me that little imagination...

I'll report back on Monday to let you know how my first DJ session went ;)

A fond farewell

I realise it's been a while since I last wrote on here, but fear not - I'm still around!

What's been happening in the last month...? A few hospital visits; crippling chest pains; a blood transfusion; realising that I can no longer walk without aid, whether it be my crutches, my wheels or an arm; planning a radiotherapy schedule with my consultant; making the decision to take no more chemo and have my Hickman line removed.

Almost nine months I've had that line in for... so I feel a bit strange now it's gone. It only got removed today, so I'm a little sore at the moment. And I feel like something's missing. I think I'd got used to it being there. And it took me so long to get used to having it in the first place!

The removal itself was straightforward and pain-free. I could feel it being wiggled to free it, and could feel it being slid out, but it didn't hurt.

And now... well now I can take my baby girl swimming, and she can rest her head on me while we're having a cosy snuggle without me having to move her to one side.

It'll be strange not having to tap her hand away from tugging on it, too!

I think it's a bittersweet farewell - I'm thrilled that it's gone and I can start to look a bit normal again, but I can't help thinking that by refusing any further chemo this is going to be the start of the end.

Who really knows...