It might be that they (the NHS) have to apply for funding for treatment every time but I know about this one. I know that I'm expensive.Taxes for me are such a small part of the gratitude I feel to being able to get the support and treatment I get. I've always felt privileged and blessed to have the NHS there for me. I don't know how long it can last.
I imagine this is a tiny part of what Americans feel or fear. Not knowing if you can afford the best cure, even the right scan. It's bad enough having to know you need 6 monthly scans and various other blood tests etc. When I get worried about an odd feeling, I, well, worry but I don't worry that when I ask my GP or my genetic nurse to get some advice, do a test and help and I don't expect that I'll have to find the cash.
What do I do this time, what do I do if they say," oops we;'ve really run out of money", or "Sorry the budget just won't stretch that far and there are other people who need it more."
And naturally I'm still waiting. Oh the waiting. Pals, friends all resisting the urge to ask, "do you have a date yet." and then they don't, I suspect because they worry I have got a date and I'm not telling them, or they missed the email or just because, unlike me, they haven't practice patience quite as often.
I'll probably send another email if I don't have a date by Wednesday.
Sunday, September 27, 2015
Monday, September 14, 2015
Melt down Monday
Had a wobble today, the straw that broke the camels back? It was incompetent staff, a waste of my time and their intellect.
It shocked a couple of people - it left them unsure what to do - they could scoop me up and hold me and let me sob which is what I wanted, what I felt I needed, I sat alone and was watched.Their indecision? Well a myriad of reasons. I sucked it up... that's what you do.
One of the watchers was a friend/co-worker who perhaps hasn't seen it before, as I've always managed to hide it better, said I was like one of those penny slot machines, loads goes in, and keeps going in and then all of a sudden that one penny sends a whole load of them crashing through the slot.
It made so much sense, even the fact that you don't even notice where the pennies land and the tray doesn't look full in places, you think, loads more will go and then - oh but not there one more there and then it lands and nope, actually it's holding and the unexpected can bring it all down around you.
If I'd let myself today I think I could have cried for an hour but I was at work and I had to get on so I picked up all those pennies (minus a couple that escaped under the machine) and quickly shoved them back in the slot.
Later that day I said fuck a lot in my office, to a colleague that finds that quite funny, when people just wouldn't stop coming to my door even though I wasn't the person who they should have been bothering. A couple of pennies dropped.
I taught a good lesson, they, the students, made me laugh, one dropped
I called someone and we talked, one more
I cried on the way home, a couple more
I'm writing this - another one
Trouble is, as each one drops more seem to go in while I'm home or thinking about my enemy.
It shocked a couple of people - it left them unsure what to do - they could scoop me up and hold me and let me sob which is what I wanted, what I felt I needed, I sat alone and was watched.Their indecision? Well a myriad of reasons. I sucked it up... that's what you do.
One of the watchers was a friend/co-worker who perhaps hasn't seen it before, as I've always managed to hide it better, said I was like one of those penny slot machines, loads goes in, and keeps going in and then all of a sudden that one penny sends a whole load of them crashing through the slot.
It made so much sense, even the fact that you don't even notice where the pennies land and the tray doesn't look full in places, you think, loads more will go and then - oh but not there one more there and then it lands and nope, actually it's holding and the unexpected can bring it all down around you.
If I'd let myself today I think I could have cried for an hour but I was at work and I had to get on so I picked up all those pennies (minus a couple that escaped under the machine) and quickly shoved them back in the slot.
Later that day I said fuck a lot in my office, to a colleague that finds that quite funny, when people just wouldn't stop coming to my door even though I wasn't the person who they should have been bothering. A couple of pennies dropped.
I taught a good lesson, they, the students, made me laugh, one dropped
I called someone and we talked, one more
I cried on the way home, a couple more
I'm writing this - another one
Trouble is, as each one drops more seem to go in while I'm home or thinking about my enemy.
Thursday, September 10, 2015
Hiccups
I've got hiccups.
I've been getting them a lot over the last few month, perhaps more. I get them at least 4 or 5 times a day, more today.
The interesting thing about hiccups is that there is a group of people who feel compelled to let you know you have hiccups. Then there is a larger group who feel they need to tell you how to get rid of them.
As tempting as it is to say 'it's my brain tumour.' I tend not to, I tend to say yes. I never take their advice. Those people are convinced their way will work and that you have not thought of it yourself, I've never really seen why people feel this is a bodily function that we should try and stop.
Someone pointed out that it might be because we need a thing to say, like ooh pardon or bless you but we don't have a formal hiccups reaction.
I thought that was a good point.
I've been getting them a lot over the last few month, perhaps more. I get them at least 4 or 5 times a day, more today.
The interesting thing about hiccups is that there is a group of people who feel compelled to let you know you have hiccups. Then there is a larger group who feel they need to tell you how to get rid of them.
As tempting as it is to say 'it's my brain tumour.' I tend not to, I tend to say yes. I never take their advice. Those people are convinced their way will work and that you have not thought of it yourself, I've never really seen why people feel this is a bodily function that we should try and stop.
Someone pointed out that it might be because we need a thing to say, like ooh pardon or bless you but we don't have a formal hiccups reaction.
I thought that was a good point.
Tuesday, September 08, 2015
zap away
We met with the man... dad and I and we have both signed the consent forms. The big yellow sheet that means you understand that you are letting them do something to you.
I'm currently having my first online CBT session. So far so like a blog!
I'm currently having my first online CBT session. So far so like a blog!
Monday, August 31, 2015
You shouldn't look up side effects
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.
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.
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.
Monday, May 12, 2014
Kidney Cancer no more?
Post op check up today and good news, no more cancer, well not in the kidney. That's the issue with VHL isn't it. No matter how happy we can be that that bit is done and dusted we know that won't be the end.
VHL will continue and so must we. Time is something I struggle with, how much have I got.
I know, I know, we all have that, any one of us could be hit by a bus... you'd have to be blind but it could happen. You could have a fatal accident with a tea cosy.
But VHL isn't likely to kill me, despite scaring the shit out of me from time to time. No, it is much more likely to destroy plans, ruin events and delay what I want to do.
Not many people get it, not many people live with a distrust of their own body.
I do
VHL will continue and so must we. Time is something I struggle with, how much have I got.
I know, I know, we all have that, any one of us could be hit by a bus... you'd have to be blind but it could happen. You could have a fatal accident with a tea cosy.
But VHL isn't likely to kill me, despite scaring the shit out of me from time to time. No, it is much more likely to destroy plans, ruin events and delay what I want to do.
Not many people get it, not many people live with a distrust of their own body.
I do
Thursday, December 12, 2013
Operation postponed
I was all ready, bloody nervous but ready. I'd organised everything at work. I'd got plans in place for home. I did a big shop for the people in the house who would need to eat and I'd packed my bag. (a few times)
I set my alarm and said goodbye to my little girl and father. Then we went on the train and found our way to the right ward. There we sat and I had bloods done, blood pressure, temperature. I spoke with a lovely anaesthetist and managed to sort out my concerns about being sick
I met with one of the surgeons and he very kindly went through all the risks - I hate that bit but oddly I felt better, less at risk. I got it; he explained it well. He drew an arrow on me - the letter R in the right place.
I got into my gown and stockings and had the wrists band on.
Then my husband went to get those that could drink and eat a coffee and we joked that that would be when I was taken down. I kissed him goodbye just in case and off he went. Then 2 surgeons I recognised turned up and we went into the side room.
No HDU bed.
They wanted to talk options. We could wait (nil by mouth) until the afternoon but everyone would be pissed off, tense. They were pissed off. And so we agreed that it just couldn't happen. The fog perhaps had caused too many staff to be absent, too many new patients, accidents and people who really needed surgery or they would die, they wouldn't last another night without the amazing NHS staff?
I got dressed. We went and got something to eat, I had a cup of tea.
Then I came home.
My prediction came true, I didn't die on the 11th December.
I set my alarm and said goodbye to my little girl and father. Then we went on the train and found our way to the right ward. There we sat and I had bloods done, blood pressure, temperature. I spoke with a lovely anaesthetist and managed to sort out my concerns about being sick
I met with one of the surgeons and he very kindly went through all the risks - I hate that bit but oddly I felt better, less at risk. I got it; he explained it well. He drew an arrow on me - the letter R in the right place.
I got into my gown and stockings and had the wrists band on.
Then my husband went to get those that could drink and eat a coffee and we joked that that would be when I was taken down. I kissed him goodbye just in case and off he went. Then 2 surgeons I recognised turned up and we went into the side room.
No HDU bed.
They wanted to talk options. We could wait (nil by mouth) until the afternoon but everyone would be pissed off, tense. They were pissed off. And so we agreed that it just couldn't happen. The fog perhaps had caused too many staff to be absent, too many new patients, accidents and people who really needed surgery or they would die, they wouldn't last another night without the amazing NHS staff?
I got dressed. We went and got something to eat, I had a cup of tea.
Then I came home.
My prediction came true, I didn't die on the 11th December.
Tuesday, November 26, 2013
ready for a fight?
Ready for a fight?
The waiting is what nearly kills you, never mind the cancer. And this time the cancer in my genes is sitting waiting to piss me off.
It is so different this time, having a daughter makes this process so very very different. Before I realise that all I worried about was me, what would happen to me, how would I feel. I don't think I really thought about my family. I was of course conscious of them but the focus was me. Now, each time I hear a new piece of information I think of her, I worry more about the impact on her. And each time I feel so blessed that it stopped with me, she, oh thank all you can thank, she isn't cursed by VHL.
And just to add to it that ominous knowledge that the pins and needles I am feeling more and more often might just be the next battle. The fight continues.
It's so hard to explain to others that this is an on going fight. Even other cancer victims don't really understand.
For a while I was convinced I was going to die, and soon and during the operation. The bleeding out, the cut that finishes me off. And I now need to trust, I need to believe and I need to get ready for a fight. My last day on this planet will not be 11th December. My last day is a long way from here.
My last day is not soon.
The waiting is what nearly kills you, never mind the cancer. And this time the cancer in my genes is sitting waiting to piss me off.
It is so different this time, having a daughter makes this process so very very different. Before I realise that all I worried about was me, what would happen to me, how would I feel. I don't think I really thought about my family. I was of course conscious of them but the focus was me. Now, each time I hear a new piece of information I think of her, I worry more about the impact on her. And each time I feel so blessed that it stopped with me, she, oh thank all you can thank, she isn't cursed by VHL.
And just to add to it that ominous knowledge that the pins and needles I am feeling more and more often might just be the next battle. The fight continues.
It's so hard to explain to others that this is an on going fight. Even other cancer victims don't really understand.
For a while I was convinced I was going to die, and soon and during the operation. The bleeding out, the cut that finishes me off. And I now need to trust, I need to believe and I need to get ready for a fight. My last day on this planet will not be 11th December. My last day is a long way from here.
My last day is not soon.
Tuesday, September 10, 2013
Limbo
The waiting, the horrible endless waiting. It's been a year since I found out that the little bugger is growing and all this time I've wanted it out.
And life has been a bit of a fug since. I don't know how I felt last time, last time I wasn't a mother and last time the risk was mine alone.
Now what do I do, how do I look after myself and be selfish like you need to be when I need to be strong for my baby girl?
This is the hardest, since the 'life expectancy letter' it has been so difficult. I carry on of course, I work and I play.
I've begun writing a diary to my daughter, in case.
And life has been a bit of a fug since. I don't know how I felt last time, last time I wasn't a mother and last time the risk was mine alone.
Now what do I do, how do I look after myself and be selfish like you need to be when I need to be strong for my baby girl?
This is the hardest, since the 'life expectancy letter' it has been so difficult. I carry on of course, I work and I play.
I've begun writing a diary to my daughter, in case.
Friday, June 14, 2013
Operation number 7
It feels very different this time. I have a 5 year old I need to think about and although it means I have no chance to show I'm worried at home I am more worried than I have ever been before.
I have been told it makes sense to prepare. I suppose all parents should but the advice was given with care and terrified me. I'll write her a diary and use it to give her memories I might not be around to express in person.
Having children makes you contemplate your own childhood and I had a great one until high school, where some bits were really shit. There were some bad memories from when I was younger but actually overall it was great and now I type that, high school had some fantastic bits too.
I have been told it makes sense to prepare. I suppose all parents should but the advice was given with care and terrified me. I'll write her a diary and use it to give her memories I might not be around to express in person.
Having children makes you contemplate your own childhood and I had a great one until high school, where some bits were really shit. There were some bad memories from when I was younger but actually overall it was great and now I type that, high school had some fantastic bits too.
Monday, May 13, 2013
Making Memories
I went on a school trip. I had to leave my little girl behind to make it happen, well it would have happened without me but I wanted to be part of their memories. I made them be in a group picture; "you'll thank me when you're older" I said to the girls and boys who didn't want to be in a picture, didn't have the confidence to see themselves there.
Making memories is really important to me, having things to look back on and feel happy about, to feel proud of. Life is after all a collection of memories...
Making memories is really important to me, having things to look back on and feel happy about, to feel proud of. Life is after all a collection of memories...
Saturday, March 09, 2013
First sight of a cortisol crisis
A couple of weeks ago I saw, first hand what it looks like when my dad has a cortisol crisis. No blood or passing out but he suddenly, and I'm talking minutes, got very cold, blue lips and finger tips, shivering. As luck would have it we were already in the hospital for a test and so I went to get the Dr, the one that had seen him just half an hour before.
He had an infection, something that most people would simply overcome but for my dad it knocked all the cortisol out of his system. I sat by his hospital bed for hours then, telling him gently where he was and what was going on, and then telling him not so gently that we needed to get blood from him. I had to be firm. The NHS so often gets critisied but for me they continue to show how much they can do.
I was struck, as I sat there, how few staff were on but how important it was that they were there, how busy different people were on the ward we were on. They get paid, like all public servants but they don't get loads and they saved him.
My dad has been saved lots of times and I know he still isn't sure if he should be sometimes but when I get a text from him that makes me smile or I hear him bash into a wall on his way to the toilet in my house I know he still has something to give, give to me. He is my dad and I love him.
He had an infection, something that most people would simply overcome but for my dad it knocked all the cortisol out of his system. I sat by his hospital bed for hours then, telling him gently where he was and what was going on, and then telling him not so gently that we needed to get blood from him. I had to be firm. The NHS so often gets critisied but for me they continue to show how much they can do.
I was struck, as I sat there, how few staff were on but how important it was that they were there, how busy different people were on the ward we were on. They get paid, like all public servants but they don't get loads and they saved him.
My dad has been saved lots of times and I know he still isn't sure if he should be sometimes but when I get a text from him that makes me smile or I hear him bash into a wall on his way to the toilet in my house I know he still has something to give, give to me. He is my dad and I love him.
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