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