Living when you're dying.

I've always hated the idea of "battling cancer", or people saying they "kicked cancers ass". There's no battle.. if cancer wanted to take you out it could do so with ease. If you have an aggressive cancer and don't die of it you've been spared. I don't think I could ever kick cancers ass, but science can. I hope no one says "after a battle with cancer..." when i'm gone. No one wins, and no one loses. You just keep on keepin on, there's no fighting.

I feel like so much has been taken from me that I can't actually be me anymore. I can't do anything I want to do, go anywhere I want to go. I've been feeling so frustrated recently. The weather has been amazing and in any other circumstances we would have dropped everything and taken the camper van up the north west coast. Or i'd be at work, checking the owl boxes in the sunshine. I feel a bit bad for being so agitated about it, it is what it is and I have to accept that. I spent a day in my garden and we had some music on, had a BBQ whilst Robin played around and Davy planted up the veg patch a bit. It was a wonderful day but I just had to sit there in my wheelchair and couldn't move and it just made it all so bitter sweet. It was a lovely way to spend an afternoon, but just a reminder of everything i'm going to miss this summer. Cancer can take a lot from you but it can't take your love. So I think that's the main thing I should focus on, love. And focus on the things I CAN do. I can spend time with my family, even if it's just sitting around. And I have been. We've been to the beach, we've been for ice cream, we've been out for sushi (it was really romantic cause my tumour is pushing on my oesophagus so i often choke and then have to throw the food back up... well that happened) we've been home enjoying our garden, went to my mums for family dinner. Just... living.

Collecting Robin from Forest School... my beautiful boys! 

Sushi in the park (shortly after I puked in a cup)

It was really easy to LIVE with a terminal diagnosis when I could just function as normal.. or knew after treatment i'd be back to normal and could plan to live life to the fullest then. And thats what I did, I made the most of my time when I felt good. But living when you're actually in the process of dying, like your body is stopping working... is hard!

I listened to the first playing of the new radiohead album the other day. MUSIC! I've not been listening to enough music in hospice. And as soon as I do I kick myself because it's so good for the soul. So, when my cancer first came back, I had bought some tickets to see Arcade Fire's last gig of their Reflektor tour. We'd been to quite a few of their gigs in the UK and volunteered in Laaandaan for a night. Every single show was different and they hit it out the park every time. Being at an AF gig is my happy place. The night at the barrowlands!!! Anyway, So the last show was in Montreal, and we had tickets to the show and flights and everything (we were going to visit family over there) and then I had to cancel it all to start treatment again. So one of those amazing pals i mentioned earlier (Meg!) contacted her 'people' and managed to get me a get well soon card, thanking me for volunteering over the years and it came with a jumper and some badges and stuff! It totally put a smile on my face when I was at a bit of a low point.

That seems like a lifetime ago! Fast forward a year and a bit and i've been living with the cancer for ages and we've got quite used to each other... I'm functioning and living a normal life on pazopanib. So, much to my delight I see that arcade fire are coming to Europe and playing at a festival with Radiohead!! So i instantly bought two tickets and flights and got excited. Then.... my cancer went ape shit and spread. I think every time i buy tickets to an arcade fire gig in another country I GET CANCER somewhere... in my body. I've been to loads of gigs in the UK with no cancer dramas. So twice, some lucky bugger has got my tickets for free cause I've not been able to make it and given them away. Anyway... So i just turned 30, and Meg worked her magic again! She gave me a card that I was convinced Lisa had written saying it was from the Acrade Fire mob.. and they'd sent me one of my favourite tunes on vinyl (Sprawl II) a reflektor t shirt, a wee mini disc and a HUGE poster. What an absolute bunch of legends :) Especially Meg! 

In other news.. I had a scan on Monday to see if I could have some radiotherapy to take the pressure off my heart. I was very excited about this.... had visions of me being able to walk around on my own again.. meaning I was well enough to start the chemo I was about to start, starting that and living for the summer, giving me enough time to have an awesome summer with my boys and either win the lottery to pay for a 3D printed rib cage and having surgery OR find a clinical trial that would completely cure me :)  I went to get the results today. Not quite what i'd hoped (but quite what I'd expected) Everything has progressed very quickly, its spread, its getting ROWDY! (have I bought some arcade fire tickets recently?!)

So no radiotherapy as the tumour is pushing right on to my lung and when you've only got one wee lung thats not working at full capacity you don't want to blast it with radiation.  The scan report was insane though, it mentioned my stomach had collapsed like that was nothing,,, what does that even mean?!? I've got "satellite tumours" on my tumours. Fluid in my stomach, cancer near my pelvis, in my lung, in between my ribs, and my two main tumours are doing very well for themselves. So.... aye. This is where I am, and where I am is here. I feel OK at the moment. Davy seems to think its a bit of a shock and I'll be sad tomorrow but to be fair I did KNOW it must be growing. And i feel better knowing rather than being in limbo. It's easier to accept. This is how we dealt with that news.....

                                            

Also, i had a sneaking suspicion as i'd felt my breathing getting harder the last few days, moving around taking it out of me more :o/ 

We shall see... xx

Planning FUNerals

Why is it so hard. I'm thinking cause it's a funeral everyone expects and a FUNeral I want. I know I don't want everyone watching my old shell being lowered in a box in to the ground. I've never liked that about funerals. Like the body is of any kind of importance?! It really isn't. What I want is for my body to be put in the ground in the quickest composting Vessel possible and no one to witness it like it held any reverence. Then, when that's done, people can then be invited to say by if they wish by coming to share in the joy of creating the new life my old body will nurture (in my case a cherry tree). I want people to celebrate the amazing and blessed life I was lucky enough to have. Not mourn a future I never had a right to in the first place. Of course people will be sad. If it were younger members of my family I know I'd be mourning the loss of something that could still have had more to give! I just don't want that to be the focus. I want the focus to be a celebration of a life. 

We've bought a little plot in a woodland burial site not far from the back fields of our home. I feel good about this. We've also bought a native cherry tree (which, if i don't hurry up and die will end up going in to shock if they have to plant it after it's went in to flower) The planting of a native tree, some plants and then a good old knees up with some music stories and pictures afterwards to celebrate the life that was. I think this would be a good thing for Robin too, rather than everyone in black and him knowing mummy was in a box but not knowing why that was what we we're focusing on. I'm sure for him focusing on the memories and the future for him will make more sense. 

Still getting stronger, although it seems to have plateau'd which is fine.  I’m not entirely sure what the hell is going on. I just can’t understand why one day I was climbing Ben Lomond and the next I couldn’t walk the length of myself.. how can something like that not be gradual? Now I don't need my oxygen, have no pain pump and no catheter. So I've been able to escape for the day which has been amazing for my mental state! I've felt like i've been having some quality time with Robin which is what it's all about :) 

I miss home! I do love the hospice for what it is though. The staff are all amazing, they care about my entire family. I’m sure after i’m gone my family will do what they can to help raise money for this place. Its costs £2 million to run it for a year and its only half funded by the NHS, the rest of the money has to be raised. Its such an important service!! I can’t imagine how i’d be feeling right now if I had been in hospital for four weeks with visiting only allowed a couple of hours a day. Instead I can have my family around me all the time, my beautiful boy sleeping beside me. Safe in the knowledge i’m surrounded by people who specialise in end of life care for when that time comes. They gave us tickets VIP tickets to Disney on Ice, which had been donated to them. So we had a lovely night out as a family which felt nice, Robin really enjoyed it and it was great to see his wee face light up! I've been here for five weeks now. I'm wondering if it's some sort of record. I would love to go home. If i had no stairs in the house, i'd be home right now! Depending on the scan results I think we might try and get home if it looks like I might have weeks left. They said we could do a trial just to see if we can make it work, with the toilet being upstairs and everything. My only concern is I definitely want my end of life care to be here, after talking to them about the differences between dying at home and in here. But if i go home there's no guarantee i'll be able to get back in here when I need to, thats my main concern about leaving. Its like a big family here, we've become quite close to a lot of the staff and I think they're just as keen to be looking after us at the end as we are to have them looking after us. They are so sweet, every time we're leaving its like having four mums fussing over us.

May the 4th be with you - we celebrated with breakfast in bed and a Lego starwars Marathon! 

I also used my new found freedom to go to clinic and meet my oncologist. We spoke about radiotherapy. She said she'd be keen to try it if i had some pain that couldn't otherwise be controlled. I said I'd be keen to try it to take some of the pressure off my heart and perhaps let me be able to walk around and get a bit of normality again. She said there's no guarantee that would happen, however I have always responded well to RT before. Last time my tumour was visibly smaller in just three days! So she was saying would it be worth one or two weeks of feeling WORSE and then not being guaranteed to recover to e better level afterwards. I say yes. I'm just sitting around a lot anyway, so if i get RT i'll just be sitting around feeling more tired... but still able to cuddle and read and play games with robin which is all I do anyway. Then after the side effects wear off I'll either be back to where I was or hopefully in a better position where my heart isn't compromised and I can breathe easier and walk again. Go home!! Cook food! Bath Robin! A little bit of normality.  I think it's worth the risk as the side effects shouldn't be too bad and the potential benefit could be great... OR... just not much different. So, she said OK lets get  CT Scan and see what's what. We need to make sure it's even an option before we go any further. So thats where I am just now, just waiting on a scan. I had an X-ray and my lung was clear of fluid and the tumour in my lung wasn't visible so i guess it's kind of behaving. I think we could see a bit of the tumour behind my heart. And i can see with my own eyes and feel with my hands that the tumour at the bottom of my ribs is growing FAST! I'm not sure how much of a concern that is, it just depends where it's growing i guess. No point in speculating. I'll just need to hope things stay stable until the scan and take it from there. Trying not to get my hopes up about RT... which is hard, as I'd LOVE a good dose. She said it would only be five days too which is good. Five days of a higher dose. It's always been five or six weeks of a lower dose before. Not so secretly, I hope that I can get RT, and it makes me well enough to get some more chemo. That would be the absolute best case scenario. Maybe get to hang around for the summer. It's unlikely though, I don't even think it's that likely I'll get RT.

I've been up and down over the last few weeks. I get really low initially. I spend almost three weeks in bed, unable to move around much. Then I was able to get out of bed and sit on the chair. Then things just kept getting better and better. Once I was able to get outside it really helped with my mood. I had been pretty low being stuck in here, feeling like I was just waiting to die and not really having much quality time. Robin and Davy were in the other bed and I was stuck in mine with my driver and catheter tubes everywhere. I couldn't even read robin his story because I couldn't breathe well enough. Now we share my bed, i read to him every night, usually after watching a movie and having a hot chocolate together. He's getting pretty spoiled in here and thats ok. It won't last forever and we're having a nice time together. I love watching him fall asleep and waiting for him to wake up in the morning. He's a ball of sunshine ALL the time. I was worried, when i was stuck in here that he was seeing me cry too much.. You know I came here with an acceptance it was time to go, i'd said my goodbyes like the doctors suggested and I was leaving this earth in deep gratitude. Then it just dragged out but I couldn't keep myself busy as usual and found it hard to be so idle. I just had way too much time to think about what I was leaving behind. It's better now though, i've felt happier since being able to spend better time with Robin and get out. And my sister reassured me, kids remember what people talk about.. and no one is going to say "Remember that time yer maw cried fur three days?!" haha.

Anyway, today I feel OK. So... that's good! Just hang in there wee heart until we get a scan! And if yer upfirit tumours, just stop growing for a bit, take it easy!

xx