1 week ago
Friday, 5 March 2010
Well fed
Yesterday I started eating properly again. I had a very frustrating mid week experience where I wanted to eat more than just toast but my stomach was really struggling to take it in. Last night someone made us fish pie. It hit the spot.
Whilst I have been FED UP, the other member of our household has been very WELL FED all week. We have been so touched by the kindness of the church community who are reaching out with love at this time. For over a week we had Jonny's evening meals delivered for him and this has been a huge help. There have been pangs of guilt. You may have got by now I struggle with accepting help. But goodness. The boy has eaten well.
Obviously this illness doesn't just affect me. On our wedding day we had a phrase from dove poem which read "two parts of a loving whole, two hearts and a single soul." And whilst I am camped out in chemo land at home, the other part of us is working 12 hour days, coming home to try and look after me, as well as dealing with his own emotional fears I know. So having a good proper meal sorted has REALLY helped.
So we say thank you. Thank you. And thank you again.
Tonight we will be eating in Pizza Express. And that feels like a massive treat of a different kind too.
Whilst I have been FED UP, the other member of our household has been very WELL FED all week. We have been so touched by the kindness of the church community who are reaching out with love at this time. For over a week we had Jonny's evening meals delivered for him and this has been a huge help. There have been pangs of guilt. You may have got by now I struggle with accepting help. But goodness. The boy has eaten well.
Obviously this illness doesn't just affect me. On our wedding day we had a phrase from dove poem which read "two parts of a loving whole, two hearts and a single soul." And whilst I am camped out in chemo land at home, the other part of us is working 12 hour days, coming home to try and look after me, as well as dealing with his own emotional fears I know. So having a good proper meal sorted has REALLY helped.
So we say thank you. Thank you. And thank you again.
Tonight we will be eating in Pizza Express. And that feels like a massive treat of a different kind too.
Thursday, 4 March 2010
Belonging
One of my experiences of the past few days has been letting local hospice care help me at home. This has been hard. Emotionally. It's that word. Hospice. Is that where I am? Is that what I need? How can this be?
It turns out that this is Ann's job though. To visit people like me who are dealing with side effects and symptoms at home. And she was really helpful. She just got it on many levels.
I had been putting a lot on myself about how badly I have been coping recently. Whilst the reasons were not what I wanted to hear, to have someone who knows there stuff tell you it is not you, it is your body and everything you are going through, gave me some acceptance that it is not just me. I'm really sick. And that isn't my fault. So we are pleased and so grateful for this help. Even if it is a hard one to accept.
She left some leaflets on the coffee table. Some of which were hard to read even the title of. She also mentioned the day hospice. I am sure for some who are isolated and alone these are a real life line. But for me, right now, I'm not sure. You see I have tried various cancer support places before and it turns out I don't really fit in there either. Why not? Well one reason is my age. Believe it or not I can find myself in a situation were the staff and other visitors all treat me like some sort of "weird special case" because I have this dreadful disease at such a young age. So I end up feeling like I don't fit in the one place where in theory I should. But I don't think it is just my age. I know of others in my situation who that kind of thing is not for them. That's not to say that this support is wonderful for many. And maybe I will change. But right now - it is not a place I feel I belong.
For me this disease takes over enough. And I long to be free of it. And when I feel well enough (which is not that frequently right now) I want to see those friends and family I trust. Who I know just see Jo and not the cancer.
I believe most of us yearn to belong, wherever we are in life. For me, heartbreakingly, doors have been closed. But that is not to say I don't belong anywhere. There are special people and places and moments where I totally do. Not defined by illness or labels or what I look like or whatever. A level beyond any of those temporary things that seek to destroy my human spirit.
Where I do belong.
It turns out that this is Ann's job though. To visit people like me who are dealing with side effects and symptoms at home. And she was really helpful. She just got it on many levels.
I had been putting a lot on myself about how badly I have been coping recently. Whilst the reasons were not what I wanted to hear, to have someone who knows there stuff tell you it is not you, it is your body and everything you are going through, gave me some acceptance that it is not just me. I'm really sick. And that isn't my fault. So we are pleased and so grateful for this help. Even if it is a hard one to accept.
She left some leaflets on the coffee table. Some of which were hard to read even the title of. She also mentioned the day hospice. I am sure for some who are isolated and alone these are a real life line. But for me, right now, I'm not sure. You see I have tried various cancer support places before and it turns out I don't really fit in there either. Why not? Well one reason is my age. Believe it or not I can find myself in a situation were the staff and other visitors all treat me like some sort of "weird special case" because I have this dreadful disease at such a young age. So I end up feeling like I don't fit in the one place where in theory I should. But I don't think it is just my age. I know of others in my situation who that kind of thing is not for them. That's not to say that this support is wonderful for many. And maybe I will change. But right now - it is not a place I feel I belong.
For me this disease takes over enough. And I long to be free of it. And when I feel well enough (which is not that frequently right now) I want to see those friends and family I trust. Who I know just see Jo and not the cancer.
I believe most of us yearn to belong, wherever we are in life. For me, heartbreakingly, doors have been closed. But that is not to say I don't belong anywhere. There are special people and places and moments where I totally do. Not defined by illness or labels or what I look like or whatever. A level beyond any of those temporary things that seek to destroy my human spirit.
Where I do belong.
She's out
So. After a week at home in grimbles land, I have made it out of the house.
And it was SO nice. Coffee (ahem well sparkling water) with friend at the local Vic this morning, followed by being driven to Marble Hill Park and the very pretty coffee shop where I managed to share both a main and a cake - like real proper food and everything. Look at me everyone.
My friend asked me what kind of things I like to do. I said "things like this." Share life. Share living. Share cake.
Yes there were tears today. But I felt better for letting them out.
I really need to invest in some better blusher though. Seriously I put a lot of that stuff on this morning and apparently I still look really pale and washed out. Need to consult my make up expert.
And it was SO nice. Coffee (ahem well sparkling water) with friend at the local Vic this morning, followed by being driven to Marble Hill Park and the very pretty coffee shop where I managed to share both a main and a cake - like real proper food and everything. Look at me everyone.
My friend asked me what kind of things I like to do. I said "things like this." Share life. Share living. Share cake.
Yes there were tears today. But I felt better for letting them out.
I really need to invest in some better blusher though. Seriously I put a lot of that stuff on this morning and apparently I still look really pale and washed out. Need to consult my make up expert.
Wednesday, 3 March 2010
Take me to the seaside
Last night after much sobbing, I went for a walk. Around the dining room table. Yes the dining room table. It was quite an achievement.
I couldn't quite make it back to the sofa so ended up on the floor near the sofa on the grimbles carpet. Jonny reached out to me to help.
I wailed "you need to take me to the seaside." And again, "the seaside!"
Bless he said he would. Just not last night.
Simple dreams hey. So far we have the field and the seaside. Although sunshine is needed for both.
I couldn't quite make it back to the sofa so ended up on the floor near the sofa on the grimbles carpet. Jonny reached out to me to help.
I wailed "you need to take me to the seaside." And again, "the seaside!"
Bless he said he would. Just not last night.
Simple dreams hey. So far we have the field and the seaside. Although sunshine is needed for both.
Tuesday, 2 March 2010
Fed-up-ville
There are things to blog about but not sure I want to right now. The line between private and blog is a fine one. But one which I am in control of. Maybe there are things I will write about of the last few days when I am feeling like I can gather my thoughts better.
Let's just say I am not feeling well and bloomin fed up with it.
Hence living in fed-up-ville.
Think I need to find something else to blog about in the meantime. It is hard when I have spent days now in this place. I am missing the winter Olympics. It got me through quite a few days. It's all quite crazy though. Our girl Amy Williams got gold in the skeleton bob sleigh. This basically means she lay on her stomach on a tray with some runners on the bottom. The then hurled herself as fast as she could down the bob sleigh run. Seriously. Crazy stuff. Well done her though.
Water biscuit anyone?
Let's just say I am not feeling well and bloomin fed up with it.
Hence living in fed-up-ville.
Think I need to find something else to blog about in the meantime. It is hard when I have spent days now in this place. I am missing the winter Olympics. It got me through quite a few days. It's all quite crazy though. Our girl Amy Williams got gold in the skeleton bob sleigh. This basically means she lay on her stomach on a tray with some runners on the bottom. The then hurled herself as fast as she could down the bob sleigh run. Seriously. Crazy stuff. Well done her though.
Water biscuit anyone?
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