In a bid to be prepared for my consultation I referred to the trusty internet and as always went to Cancer research and NHS as I feel I can rely on them. Not great stuff, but there are very few good side effects. (the tan is one!) But now I'm thinking maybe I should have buried my head in the sand.
A shunt, swelling, severe headaches and more besides. Traditional surgery anyway... Side effects that could happen straight away, months or years later. All seem bloody horrible.
Loss of function, not being as focused as you were, concentration etc etc
Will I be allowed to drive... with that list I know I bloody wouldn't say I could.
This disease is such a pain in the arse.
Today I cried quite a lot. I called my mum and despite her calm and sensible advice and warmth I know I worried her senseless.
'It's so hard mummy.' and 'I give up.' fell out of my tired mouth. I really did feel that way this morning. If I hadn't been invited to a party I might have had yet another sofa day.
I read a post on depression, so much of what the blogger talked of applied to so much of how I feel. I felt hopeless and lost this morning. This evening I'm looking up side effects so I know what to ask.
I understand why people talk about fighting cancer, it isn't like you can will your white blood cells to attack, it's much more about getting up and getting on with your life even when that is the last thing you want to do. The days are very hard. If I could switch my brain off for just a little while I might get some rest but even sleep doesn't offer me that comfort. My dreams are vivid and frighten me, I wake up crying, angry and afraid.
Perhaps that why when I feel there is a glimmer of happiness I run towards it, when there is a chance to feel numb I take it and when I need to I call my mum, sister or a friend. In spite of all of this I have them, I have that love.
Monday, August 31, 2015
Saturday, August 29, 2015
Home alone
I'm at home on my own which is rare now that I have a little girl. She has gone on an adventure with her father and I'm staying put.
Not that I don't like adventure, it is just that I'm more of a worrier and I don't want to ride a bike that far to get wet and not have cups of tea.
He is an amazing dad, the best and he always will be. I hope and I need to know that because who knows how long I'm going to be here to be the mum. I'm hoping ages, I'm hoping medical technology keeps me alive and well but as yet there isn't a cure and so I know there is a chance that I won't be physically able to be one type of mum and in my darkest moments I wonder if that sell by date might just come true.
I've bee getting pins and needles again this last couple of weeks and at 11.4mm I think that brain tumour of mine is doing a bit more than giving me hiccups. I'll keep a note.
A medium mood day.
Not that I don't like adventure, it is just that I'm more of a worrier and I don't want to ride a bike that far to get wet and not have cups of tea.
He is an amazing dad, the best and he always will be. I hope and I need to know that because who knows how long I'm going to be here to be the mum. I'm hoping ages, I'm hoping medical technology keeps me alive and well but as yet there isn't a cure and so I know there is a chance that I won't be physically able to be one type of mum and in my darkest moments I wonder if that sell by date might just come true.
I've bee getting pins and needles again this last couple of weeks and at 11.4mm I think that brain tumour of mine is doing a bit more than giving me hiccups. I'll keep a note.
A medium mood day.
Wednesday, August 26, 2015
A down day
Letters arrive for those of us with VHL on a regular basis. Appointments, follow ups scans. In these days of electronic communication it is a surprise to have so many piece of paper. Today three came with NHS written on the envelope and I hoped at least one of them would say when I was going to see the consultant and at last I'd feel we were moving forward. But no they were not and so I'm still waiting, waiting, waiting and I don't even have the distraction of work.
I've been trying to fill up the next few weekends to help with the passing of time.
And the disappointment of these letters today have taken their toll on my mood. Luckily for my little girl she has friends over and they are being silly and laughing and she hasn't noticed I'm grumpy. Oh and I am so very grumpy.
I tried calling other people but I couldn't shift my mood. I thought this might either force me into a good cry or cheer me.
Nope, neither yet.
Ah well, I'll grump on and feel sorry for myself for a bit longer.
I've been trying to fill up the next few weekends to help with the passing of time.
And the disappointment of these letters today have taken their toll on my mood. Luckily for my little girl she has friends over and they are being silly and laughing and she hasn't noticed I'm grumpy. Oh and I am so very grumpy.
I tried calling other people but I couldn't shift my mood. I thought this might either force me into a good cry or cheer me.
Nope, neither yet.
Ah well, I'll grump on and feel sorry for myself for a bit longer.
Saturday, August 22, 2015
Counselling
I've asked for some.
At first I thought it was a sign of weakness, despite giving others the advice to get some but it has been along time now that I don't feel I am able to cope all the time.
When you ask, who am I? Not in a philosophical way but in a, I don't recognise who I am sometimes and I don't know if I like myself, then it's time to admit that with the best family and friends in the world, maybe you need a bit of extra support.
I don't feel like that often and I've had a few days of late where I feel quite positive, right now in fact I feel happy and well.
Well... as happy and as well as I am capable of with all the waiting.
I'm not sleeping and I haven't done for a long time.
I can go to sleep now, for a while, when I had the cancer I used to stay up late (for me) watch TV and have a couple drinks so that I would sleep. A friend gave me some lavender spray to try instead. She was worried, as was I. I stopped using TV and drink to lull me to sleep.
I still wake up, wide awake at 3 or 4 or 5 sometimes all 3. Wide awake with a head full of everything and nothing. I've tried various suggestions, counting back from 500, naming things with each letter of the alphabet, remembering mundane lists of facts, doing my timetables (mine you note) and running happy memories over and over.
They help to distract me but sometimes the various emotions just hang on and I toss and turn, get irritated with my husband for breathing, snoring, moving and being asleep.
Sometimes I go and sleep in the spare room. I refuse to get up before 5:30 as that would be giving in.
I went to my GP and made it clear, I don't want to be on anti depressants and I don't want sleeping pills. I want to have a private space to vent and cry and say some of the things I can't even say on here. Can't even write in my diary and it isn't all VHL. It's other stuff because my life isn't all VHL. Despite feeling like it right now.
I am capable of being a very happy person. I'm known for it... I am just full of self doubt and at times loathing and I want to make sure that full feeling gets a bit more balanced,
Yesterday a colleague and potential friend came over and she has had that kind of support and said it was the best thing she ever did.
I've had it before, not long after my brother died. I learnt that I was desperate for a boyfriend! My counsellor cried, I didn't. I just told her my life story, it was already longish.
I've since learnt that VHL has given me a sense of never wanting to need anyone. Do you thnk that is ok? I've said it often enough, I can get over anything. (I've changed my mind on that, if anything happened to my little girl I'm not sure I would be able to)
Do I get over it or just push it down with all the other repressed emotions?
Who knows. I suspect that's what I'll see if I can find out and well, if it all starts to flood out then I might be happy with me again.
I currently feel like a fraud.
Complex aren't we, humans.
At first I thought it was a sign of weakness, despite giving others the advice to get some but it has been along time now that I don't feel I am able to cope all the time.
When you ask, who am I? Not in a philosophical way but in a, I don't recognise who I am sometimes and I don't know if I like myself, then it's time to admit that with the best family and friends in the world, maybe you need a bit of extra support.
I don't feel like that often and I've had a few days of late where I feel quite positive, right now in fact I feel happy and well.
Well... as happy and as well as I am capable of with all the waiting.
I'm not sleeping and I haven't done for a long time.
I can go to sleep now, for a while, when I had the cancer I used to stay up late (for me) watch TV and have a couple drinks so that I would sleep. A friend gave me some lavender spray to try instead. She was worried, as was I. I stopped using TV and drink to lull me to sleep.
I still wake up, wide awake at 3 or 4 or 5 sometimes all 3. Wide awake with a head full of everything and nothing. I've tried various suggestions, counting back from 500, naming things with each letter of the alphabet, remembering mundane lists of facts, doing my timetables (mine you note) and running happy memories over and over.
They help to distract me but sometimes the various emotions just hang on and I toss and turn, get irritated with my husband for breathing, snoring, moving and being asleep.
Sometimes I go and sleep in the spare room. I refuse to get up before 5:30 as that would be giving in.
I went to my GP and made it clear, I don't want to be on anti depressants and I don't want sleeping pills. I want to have a private space to vent and cry and say some of the things I can't even say on here. Can't even write in my diary and it isn't all VHL. It's other stuff because my life isn't all VHL. Despite feeling like it right now.
I am capable of being a very happy person. I'm known for it... I am just full of self doubt and at times loathing and I want to make sure that full feeling gets a bit more balanced,
Yesterday a colleague and potential friend came over and she has had that kind of support and said it was the best thing she ever did.
I've had it before, not long after my brother died. I learnt that I was desperate for a boyfriend! My counsellor cried, I didn't. I just told her my life story, it was already longish.
I've since learnt that VHL has given me a sense of never wanting to need anyone. Do you thnk that is ok? I've said it often enough, I can get over anything. (I've changed my mind on that, if anything happened to my little girl I'm not sure I would be able to)
Do I get over it or just push it down with all the other repressed emotions?
Who knows. I suspect that's what I'll see if I can find out and well, if it all starts to flood out then I might be happy with me again.
I currently feel like a fraud.
Complex aren't we, humans.
Friday, August 21, 2015
My mother
My mother has started a blog, she was going to write a book but I encouraged her to do a blog, faster and more accessible.
So if you want a different perspective on my life then take a look.
gotchapd.blogspot.co.uk
She'd love you to have a look, I get my attention seeking tendencies from her. I don't really share my one with my family because it isn't for them and I don't mind the idea that no one reads it. I keep a diary for my really private thoughts, just goes to show you how much I trust my husband, he would never look.
He really is the most trust worthy person I have ever met. That's a different post I think.
My mother. I don't know how she does it and I've told her that often enough. How can you loose a child and carry on, for us I suppose, for the two of us left behind. Her life just hasn't been what she ever wanted. She wanted to see the world, be a free spirit and she got this life. I wonder how happy she has been, so must misery and worry and pain.
When I think of her I worry about her. I worry that she is trapped by VHL and will never escape, she may even be more trapped than me.
So if you want a different perspective on my life then take a look.
gotchapd.blogspot.co.uk
She'd love you to have a look, I get my attention seeking tendencies from her. I don't really share my one with my family because it isn't for them and I don't mind the idea that no one reads it. I keep a diary for my really private thoughts, just goes to show you how much I trust my husband, he would never look.
He really is the most trust worthy person I have ever met. That's a different post I think.
My mother. I don't know how she does it and I've told her that often enough. How can you loose a child and carry on, for us I suppose, for the two of us left behind. Her life just hasn't been what she ever wanted. She wanted to see the world, be a free spirit and she got this life. I wonder how happy she has been, so must misery and worry and pain.
When I think of her I worry about her. I worry that she is trapped by VHL and will never escape, she may even be more trapped than me.
Thursday, August 20, 2015
Tragedy is my shadow
Today was GCSE results day.
And strangely was also the funeral of an ex-student, there on site, in my new school.
It's a tragedy, a girl of 21. I know nothing about her but I know she loved school, well at least her parents must have felt so. I didn't stay.
You see I'm not good with coffins, who is? But since I sat and lived through my brothers funeral I'm a mess. I find it hard seeing them no matter what and I cry, all the feelings from that day come flooding back, they fill me and the water spills over. I fill with fear and as usual I fill with the dread of not just my own mortality but that of all the people I love. But I fill with another fear now I have a daughter. I fear leaving her.
At my brothers funeral I promised myself I would live my life to the full.
Have I done that?
This summer has been insane with the potential of tragedy, and so far not us. When my brave, strong, capable mother says
"I wanted to tell you both together..." and there we are she might have breast cancer oh and needs an MRI for a suspected brain aneurysm. I went numb, I said something stupid like "It will be fine" exactly what people who don't know say.
I honestly didn't feel anything, not a single emotion and I didn't begin feeling until I had to try and go to sleep. Then that feeling of fear began to creep in, selfish thoughts of how would I have home any more. Because the truth is that my mum is home. She's the part of me that I need to feel like I'm ok. She is the bit of my life that I've always been able to rely on and trust and love. She is my consistent and it is the last thing that I could cope with loosing her.
So it reminded me of how I need to be that for my little girl and that, of late, I don't know if I have been.
I told myself recently that in a few years she wouldn't need me any more so I felt that if I went she would be ok but I'm 37 and I really need my mum.
My friends sister too dying of cancer, only 32.
And strangely was also the funeral of an ex-student, there on site, in my new school.
It's a tragedy, a girl of 21. I know nothing about her but I know she loved school, well at least her parents must have felt so. I didn't stay.
You see I'm not good with coffins, who is? But since I sat and lived through my brothers funeral I'm a mess. I find it hard seeing them no matter what and I cry, all the feelings from that day come flooding back, they fill me and the water spills over. I fill with fear and as usual I fill with the dread of not just my own mortality but that of all the people I love. But I fill with another fear now I have a daughter. I fear leaving her.
At my brothers funeral I promised myself I would live my life to the full.
Have I done that?
This summer has been insane with the potential of tragedy, and so far not us. When my brave, strong, capable mother says
"I wanted to tell you both together..." and there we are she might have breast cancer oh and needs an MRI for a suspected brain aneurysm. I went numb, I said something stupid like "It will be fine" exactly what people who don't know say.
I honestly didn't feel anything, not a single emotion and I didn't begin feeling until I had to try and go to sleep. Then that feeling of fear began to creep in, selfish thoughts of how would I have home any more. Because the truth is that my mum is home. She's the part of me that I need to feel like I'm ok. She is the bit of my life that I've always been able to rely on and trust and love. She is my consistent and it is the last thing that I could cope with loosing her.
So it reminded me of how I need to be that for my little girl and that, of late, I don't know if I have been.
I told myself recently that in a few years she wouldn't need me any more so I felt that if I went she would be ok but I'm 37 and I really need my mum.
My friends sister too dying of cancer, only 32.
Friday, August 07, 2015
Telling your child you have a brain tumour
I'm posting a lot today as I've been saving these up.
We discussed telling our daughter of the latest news and I decided it best to make it a matter of fact kind of deal. So a week ago as we were in her bedroom I decided to tell her. We lay on her bed and I said something like "you know when you were at Grandma's last week and I went to the hospital well they told me I have another tumour they need to do something about."
As part of the conversation she asked if I was going to die. Now then, I've always been clear with her that we all die and I don't want her to ever think I lied about it, I said that wasn't the plan, that the Doctors had found this one and were going to do something about it. I told her about when I had one removed before and reminded her that I had had the kidney tumour removed and I'm fine now.
I told her it wasn't a secret and she could talk to me, dad or anyone else about it but reminded her most people wouldn't really get it but if she wanted to talk about it she could.
We both cried a bit, I tried not to but it happened anyway.
She hasn't seemed bothered about it since, I think I handled it well.
We discussed telling our daughter of the latest news and I decided it best to make it a matter of fact kind of deal. So a week ago as we were in her bedroom I decided to tell her. We lay on her bed and I said something like "you know when you were at Grandma's last week and I went to the hospital well they told me I have another tumour they need to do something about."
As part of the conversation she asked if I was going to die. Now then, I've always been clear with her that we all die and I don't want her to ever think I lied about it, I said that wasn't the plan, that the Doctors had found this one and were going to do something about it. I told her about when I had one removed before and reminded her that I had had the kidney tumour removed and I'm fine now.
I told her it wasn't a secret and she could talk to me, dad or anyone else about it but reminded her most people wouldn't really get it but if she wanted to talk about it she could.
We both cried a bit, I tried not to but it happened anyway.
She hasn't seemed bothered about it since, I think I handled it well.
Current list
Only if you are interested
1 cerebellum brain tumour - near brain stem
1 resected cerebellum brain tumour
3 spinal tumour
1 optic nerve tumour with full thickness macular hole
1 tail of pancreas
1 liver
1 left kidney cyst
2 right kidney resected through partial nephrectomy
2 adrenal gland tumours resected
what's that now then... 13 unlucky for some
1 cerebellum brain tumour - near brain stem
1 resected cerebellum brain tumour
3 spinal tumour
1 optic nerve tumour with full thickness macular hole
1 tail of pancreas
1 liver
1 left kidney cyst
2 right kidney resected through partial nephrectomy
2 adrenal gland tumours resected
what's that now then... 13 unlucky for some
Relentless
This disease is relentless, well it certainly feels it right now.
https://vimeo.com/118914870
As William Dafoe makes clear, getting told over and over again. So much so I've forgotten what it feels like to not have something happen. What is good news?
The latest is a brain tumour, left cerebellum and near the brain stem. At the same clinic my father was told he needed treatment on two tumours.
My mum wants me to be angry, she is but I don't feel those things right now, I feel sad and scared; since having my daughter each time the news is bad I get frightened I won't see her grow up or that she'll have to live with me as someone I don't want to be and that frightens me even more. My father isn't the man he used to be. It's taken him a long time to loose his body to VHL and he's been very stubborn about that and I don't mean he's fought it I mean he has taken a long time to accept the possible help that is out there to get used to the worse body VHL has inflicted on him,. That means that he hasn't been able to adjust in ways I think would have made him a happier person and has left our family with a very different man to the one we used to know.
That's something I'm determined I won't do, each time this disease steals part of me I'll find a way round it, I'll fight I guess. I'll do my best to be who I am, whoever that is! (Although you can't deny that my dad's body seems capable of withstanding every kind of operation possible)
As always I've told people in my own positive way of the latest bad news and reached out to my friends and family who have gathered round me and made me feel loved and supported, telling me how strong I am and how I'll get through it. And when I really don't feel strong they hold me up, love me and I find that a comfort and a blessing and I know that no matter what I am a lucky person because they are there.
https://vimeo.com/118914870
As William Dafoe makes clear, getting told over and over again. So much so I've forgotten what it feels like to not have something happen. What is good news?
The latest is a brain tumour, left cerebellum and near the brain stem. At the same clinic my father was told he needed treatment on two tumours.
My mum wants me to be angry, she is but I don't feel those things right now, I feel sad and scared; since having my daughter each time the news is bad I get frightened I won't see her grow up or that she'll have to live with me as someone I don't want to be and that frightens me even more. My father isn't the man he used to be. It's taken him a long time to loose his body to VHL and he's been very stubborn about that and I don't mean he's fought it I mean he has taken a long time to accept the possible help that is out there to get used to the worse body VHL has inflicted on him,. That means that he hasn't been able to adjust in ways I think would have made him a happier person and has left our family with a very different man to the one we used to know.
That's something I'm determined I won't do, each time this disease steals part of me I'll find a way round it, I'll fight I guess. I'll do my best to be who I am, whoever that is! (Although you can't deny that my dad's body seems capable of withstanding every kind of operation possible)
As always I've told people in my own positive way of the latest bad news and reached out to my friends and family who have gathered round me and made me feel loved and supported, telling me how strong I am and how I'll get through it. And when I really don't feel strong they hold me up, love me and I find that a comfort and a blessing and I know that no matter what I am a lucky person because they are there.
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