Well my lovely bloglets,
Today 6 years ago I stopped drinking and I have been thinking about everything that I have given up.
Smoking. I loved it. Getting up making that first mug of tea and having a fag. A sore throat at some point led to me to menthol filters. I was a roll up girl but couldn't roll no matter how much I tried so had a rolling tin. And after that sore throat and the discovery of being able to buy menthol filters I never looked back. And it decreased the amount of people who crashed a fag off me by well, 100% really. So that was a massive plus!
And then I stopped. My body hated it. It made me feel sick. My mind loved it. It still does at times. The thought of sitting in the sunshine with a glass of red wine or a pint of cider with a fag. Bliss. But my body was being clever. I gave up officially in the March, had my last drag that New Years Eve and then 19 days later, my cancer diagnosis.
The body tells you everything, if you can just listen.
So booze. I stopped. To start with it was just going to be a few months and then it carried on and now, today, it's been 6 years. I do miss it at times. Especially recently. But I think that's stress. And it's a good job I don't have booze as a go to.
I do miss not having to explain to people that I don't drink. Especially when the other person is slightly pissed and finds someone being in a pub or club sober a terrifying thing...
It's good I don't drink. I was a maniac and not in a good way. Drinking to cope is not a good thing. Getting so shit faced my memory was wiped instantly is not a good thing. Hating myself because booze does not make you a rational person is not a good thing.
I am much happier now that I don't drink. I like me on a night out and more importantly I like me when I get home and when I wake up the next morning.
I have given up a lot over the last 7 and a half years but giving up booze was the best thing. And also, forgive me if I'm not impressed when you don't drink for a month because it's so hard. It isn't. I've done it and continue to do it without asking for regular recognition or money for charity.
So today is an achievement and one I am proud of. Today I will shout about it because I have done what I didn't think was possible and what many can't.
With love and hope,
Me XxX
Monday, 30 June 2014
Friday, 20 June 2014
New Drugs
Well my lovely bloglets,
I sort of wish I had written this yesterday when I received the email from my consultant that my leukaemic rate has gone up from 0.016% to 0.038% so I have to start the new drugs.
Today I feel calmer. Resigned. I don't want to take them but I have to. I don't want to because of the fasting twice a day. For two hours before and an hour after taking them. And because it's highly probably I will be intolerant. So now I will be on high alert. How do I feel? My legs are aching. But they were anyway because I'm exhausted. Shooting pain in my head. That's the fatigue. What else feels different? Or will I begin to manifest symptoms because I'm expecting them. The mind is a very powerful thing. Obviously I don't want to be intolerant to them. Two consultants have said I probably will be so I'm not hopeful. I just hope it's not like the first lot I was on. That would be fucking awful.
I have to get through the next 6 weeks.
I also don't want to take them because I have been denied the drugs I should be on. How dare they. The NHS will treat the effects of type 2 diabetes and other lifestyle related illness that can be fixed with dietary changes and exercise with pharmaceutical drugs. And I have fucking cancer and the drugs my consultant wants me to have I can't. That might be different soon depending on how I am... At least she listens to me. And communicates with me. Her last email ended with 'sorry :(' You have no idea what that means to me. She understands. Finally, someone on my side.
Always waiting.
I might have lost a bit of my hope and the idea of a bird tattoo is fading.
It seems that my body can't cope on it's own to kill the remaining cancer cells awake and dormant in my body. Maybe my dream, my want, my hope of coming off treatment is something I will have to give up on. Maybe my life will never be fully mine again.
And this hurts the most.
But I'm still here. When many aren't.
What's 2 pills a day.
XXX
I sort of wish I had written this yesterday when I received the email from my consultant that my leukaemic rate has gone up from 0.016% to 0.038% so I have to start the new drugs.
Today I feel calmer. Resigned. I don't want to take them but I have to. I don't want to because of the fasting twice a day. For two hours before and an hour after taking them. And because it's highly probably I will be intolerant. So now I will be on high alert. How do I feel? My legs are aching. But they were anyway because I'm exhausted. Shooting pain in my head. That's the fatigue. What else feels different? Or will I begin to manifest symptoms because I'm expecting them. The mind is a very powerful thing. Obviously I don't want to be intolerant to them. Two consultants have said I probably will be so I'm not hopeful. I just hope it's not like the first lot I was on. That would be fucking awful.
I have to get through the next 6 weeks.
I also don't want to take them because I have been denied the drugs I should be on. How dare they. The NHS will treat the effects of type 2 diabetes and other lifestyle related illness that can be fixed with dietary changes and exercise with pharmaceutical drugs. And I have fucking cancer and the drugs my consultant wants me to have I can't. That might be different soon depending on how I am... At least she listens to me. And communicates with me. Her last email ended with 'sorry :(' You have no idea what that means to me. She understands. Finally, someone on my side.
Always waiting.
I might have lost a bit of my hope and the idea of a bird tattoo is fading.
It seems that my body can't cope on it's own to kill the remaining cancer cells awake and dormant in my body. Maybe my dream, my want, my hope of coming off treatment is something I will have to give up on. Maybe my life will never be fully mine again.
And this hurts the most.
But I'm still here. When many aren't.
What's 2 pills a day.
XXX
Saturday, 14 June 2014
What About Me?
Well my lovely bloglets,
Since I woke up this morning I have been thinking about what to write. I need to write. I don't want to whinge as I was so happy in the last post. I'm not feeling that today. I also need to acknowledge that I'm knackered. It's the final push. 4 more weeks of clinic. 5 deadlines. 6 weeks. Done.
I have a third of my dissertation written and all the appendices sorted. That amazingly takes hours. 2 and a bit more sections to write. It will be done by the 30th. It might not be great. But it will be the best I could do with everything else going on.
A new patient as well to research for and to do my case study on. This assignment will probably end up being longer in page number than my dissertation. But it's great to have a new patient especially as I say good bye to one on Monday. It will be our 20th session together.
Last night I saw my local MP to talk about the Teenage Cancer Trust and legislation and what they do and me. The was I was treated. Being ignored, not listened to, a hospital number and not a person. It brought up a lot. He tweeted saying I am an inspiration. I don't feel it. I have been reflecting on the impact of Stephens death and it still is. A baby elephant named after him. I adore elephants as all my twitter lot know. They are magical. My 10th birthday treat was at an animal safari park and I got to ride on one. Nikka. She was rescued from a circus. And I got to ride around on her with her mahout walking alongside talking to her. No chain. She was free to wonder where she wanted. It was amazing.
And a posthumous MBE. How can I ever better that? And what about me? I do so much for charity. Because I want to. I don't do anything I don't want to. It's an honour to do it. I peer review. I have an impact on the NHS. I'm not going to die from my cancer. I don't have a bucket list that ended up in the media. I have been raising awareness about the lost tribe since 2009.
What about me.
I emailed the old CEO of TCT my blog post I wrote the day Stephen died. I will treasure his email back. Words of wisdom. Encouragement. And understanding. I walk around with cancer everyday. But no one knows. It's invisible. That's the things about chronic old mans cancer. And I'm so glad it's like that. I'm very user friendly. No one knows. And that's also the problem. I don't know how long I will have to live with it. I have approximately 10 cancer cells in every 10,000 healthy cells. It's nothing. And it's everything.
I need a break. I need to survive the next 6 weeks. I need to rest and re-charge. I need to look after me. I need a lot of therapy.
I want recognition. I want to be applauded for getting on with it. For running marathons whilst on chemo. For looking after myself. For surviving my insane degree, my class has gone from 22 to 9. For being a patient voice in a variety of groups to ensure others are treated correctly.
And I am. But still. I want everyone to know my name.
I'm a middle child.
And I'm exhausted. End of a manic degree exhausted. So that's better. This exhaustion is different. It's more manageable. I find out about when I start new chemo this coming week....
I am happy. I just thought I was better about Stephen. And it's not him. It's me. It's all my shit. And I know that. Every time I see a tweet or a Facebook post or an article in the paper about him it all flares up again. This is not to belittle what he did. Or what he went through. It's just the impact it's had on me. I was three years older when I got my diagnosis than Stephen when he died.
I keep on thinking about a bird tattoo to remind me to fly.
With love and hope,
XxX
Since I woke up this morning I have been thinking about what to write. I need to write. I don't want to whinge as I was so happy in the last post. I'm not feeling that today. I also need to acknowledge that I'm knackered. It's the final push. 4 more weeks of clinic. 5 deadlines. 6 weeks. Done.
I have a third of my dissertation written and all the appendices sorted. That amazingly takes hours. 2 and a bit more sections to write. It will be done by the 30th. It might not be great. But it will be the best I could do with everything else going on.
A new patient as well to research for and to do my case study on. This assignment will probably end up being longer in page number than my dissertation. But it's great to have a new patient especially as I say good bye to one on Monday. It will be our 20th session together.
Last night I saw my local MP to talk about the Teenage Cancer Trust and legislation and what they do and me. The was I was treated. Being ignored, not listened to, a hospital number and not a person. It brought up a lot. He tweeted saying I am an inspiration. I don't feel it. I have been reflecting on the impact of Stephens death and it still is. A baby elephant named after him. I adore elephants as all my twitter lot know. They are magical. My 10th birthday treat was at an animal safari park and I got to ride on one. Nikka. She was rescued from a circus. And I got to ride around on her with her mahout walking alongside talking to her. No chain. She was free to wonder where she wanted. It was amazing.
And a posthumous MBE. How can I ever better that? And what about me? I do so much for charity. Because I want to. I don't do anything I don't want to. It's an honour to do it. I peer review. I have an impact on the NHS. I'm not going to die from my cancer. I don't have a bucket list that ended up in the media. I have been raising awareness about the lost tribe since 2009.
What about me.
I emailed the old CEO of TCT my blog post I wrote the day Stephen died. I will treasure his email back. Words of wisdom. Encouragement. And understanding. I walk around with cancer everyday. But no one knows. It's invisible. That's the things about chronic old mans cancer. And I'm so glad it's like that. I'm very user friendly. No one knows. And that's also the problem. I don't know how long I will have to live with it. I have approximately 10 cancer cells in every 10,000 healthy cells. It's nothing. And it's everything.
I need a break. I need to survive the next 6 weeks. I need to rest and re-charge. I need to look after me. I need a lot of therapy.
I want recognition. I want to be applauded for getting on with it. For running marathons whilst on chemo. For looking after myself. For surviving my insane degree, my class has gone from 22 to 9. For being a patient voice in a variety of groups to ensure others are treated correctly.
And I am. But still. I want everyone to know my name.
I'm a middle child.
And I'm exhausted. End of a manic degree exhausted. So that's better. This exhaustion is different. It's more manageable. I find out about when I start new chemo this coming week....
I am happy. I just thought I was better about Stephen. And it's not him. It's me. It's all my shit. And I know that. Every time I see a tweet or a Facebook post or an article in the paper about him it all flares up again. This is not to belittle what he did. Or what he went through. It's just the impact it's had on me. I was three years older when I got my diagnosis than Stephen when he died.
I keep on thinking about a bird tattoo to remind me to fly.
With love and hope,
XxX
Tuesday, 10 June 2014
Feeling Hesitant
Well my lovely Bloglets,
I have now been feeling lighter for over a week and happy again. It's quite strange. The sun it out, I'm now doing a daily photo on Blipfoto (SwearingQueen if you wish to have a look) and it's really helping. I didn't realise how much I would enjoy the 100 Happy Day challenge and it certainly didn't feel like a challenge to me. Maybe it's because underneath all the cancer and chemo shit there is a genuinely happy person who has just needed the space and an outlet to get out.
I can't remember when I started to enjoy photography. I think it was after my gap year when I got all the film rolls developed and I went though them with my parents showing them everywhere I had been and was complimented on the photos I had taken. I didn't have a particularly special camera. I don't even think it had a zoom. I can't remember to be honest. I know I am by no means the worlds most gifted photographer but it makes me really happy. I can't wait to be free and in August to spend time wandering around London taking photos again. Having no time limit or destination in mind. To just wander, looking, capturing moments. Just me, my iPod and my camera. Freedom. I long to go abroad again, as I did in the summer of 2011. 6 weeks away, 3 on my own, 3 with friends. Just seeing where I ended up each day. Always with my camera in tow.
Yesterday I amazed myself by handing in a piece of work on time. That's the second time I have managed it this academic year. Being ill in October and then the grey cloud of burnout and being, well, depressed, descended. My dissertation cut off for draft work is Monday and I took a new patient yesterday, and then there is a case study, a financial plan, a communication and marketing plan, and a continuing professional development plan to write. But I feel ok about it. My new patient will be my case study. I don't think it's going to be particularly good, but the patient isn't complicated, thank fuck, which makes it easier.
I have 3 sections of my dissertation to write in just under 3 weeks. I will get there. I will get it done. I had a good meeting with my supervisor last week and also bumped into the module leader, neither are worried about me getting it done. They have faith in me. So I should have it in myself. I am getting there. Shifts are happening. My wonderful clinic supervisor was in clinic yesterday. He has always been in my corner. And he is so knowledgeable and wise and he gets me. It's amazing. He told me it's now time to let go. I don't need what I carry around with me any more. It doesn't serve me. It's not necessary. I am now me. And I should trust me. I know what's right. I know what to do. I am ready. And I feel this as well. Tentatively. It's a bit strange. Time for change.
Change. It doesn't sit so well with me but I am getting better with it. Change this week, I am waiting to find out about if I have to start the new chemo. I'm nervous. Side effects have hindered me for a long time. Not sure I'm ready to deal with more now that I feel, well, happy. I don't want to lose this. Someone pulled me up on twitter for posting so many photos of myself. I know I do it. I know why I do it. And yes. It is for compliments. Not in a narcissistic way but to confirm what I am beginning, with baby steps to believe about myself. And feeling good about me, well, that's amazing.
Next week I say goodbye to my patient that I have had since September. I will have seen her 20 times. It's sad but also it's time. She is ready. I have helped to get her there. I'm not solely responsible and would never say that I am. I have been a part of it though and that. Well. That's why I am what I am, a Naturopath. And I am well enough in myself to support someone else and to get there to where I am. I must remember that. I feel like a bird sitting on the edge of the nest getting ready to soar into the sky, and soar I shall. And it's terrifying but perfect.
And so with love, hope and happiness,
XXX
I have now been feeling lighter for over a week and happy again. It's quite strange. The sun it out, I'm now doing a daily photo on Blipfoto (SwearingQueen if you wish to have a look) and it's really helping. I didn't realise how much I would enjoy the 100 Happy Day challenge and it certainly didn't feel like a challenge to me. Maybe it's because underneath all the cancer and chemo shit there is a genuinely happy person who has just needed the space and an outlet to get out.
I can't remember when I started to enjoy photography. I think it was after my gap year when I got all the film rolls developed and I went though them with my parents showing them everywhere I had been and was complimented on the photos I had taken. I didn't have a particularly special camera. I don't even think it had a zoom. I can't remember to be honest. I know I am by no means the worlds most gifted photographer but it makes me really happy. I can't wait to be free and in August to spend time wandering around London taking photos again. Having no time limit or destination in mind. To just wander, looking, capturing moments. Just me, my iPod and my camera. Freedom. I long to go abroad again, as I did in the summer of 2011. 6 weeks away, 3 on my own, 3 with friends. Just seeing where I ended up each day. Always with my camera in tow.
Yesterday I amazed myself by handing in a piece of work on time. That's the second time I have managed it this academic year. Being ill in October and then the grey cloud of burnout and being, well, depressed, descended. My dissertation cut off for draft work is Monday and I took a new patient yesterday, and then there is a case study, a financial plan, a communication and marketing plan, and a continuing professional development plan to write. But I feel ok about it. My new patient will be my case study. I don't think it's going to be particularly good, but the patient isn't complicated, thank fuck, which makes it easier.
I have 3 sections of my dissertation to write in just under 3 weeks. I will get there. I will get it done. I had a good meeting with my supervisor last week and also bumped into the module leader, neither are worried about me getting it done. They have faith in me. So I should have it in myself. I am getting there. Shifts are happening. My wonderful clinic supervisor was in clinic yesterday. He has always been in my corner. And he is so knowledgeable and wise and he gets me. It's amazing. He told me it's now time to let go. I don't need what I carry around with me any more. It doesn't serve me. It's not necessary. I am now me. And I should trust me. I know what's right. I know what to do. I am ready. And I feel this as well. Tentatively. It's a bit strange. Time for change.
Change. It doesn't sit so well with me but I am getting better with it. Change this week, I am waiting to find out about if I have to start the new chemo. I'm nervous. Side effects have hindered me for a long time. Not sure I'm ready to deal with more now that I feel, well, happy. I don't want to lose this. Someone pulled me up on twitter for posting so many photos of myself. I know I do it. I know why I do it. And yes. It is for compliments. Not in a narcissistic way but to confirm what I am beginning, with baby steps to believe about myself. And feeling good about me, well, that's amazing.
Next week I say goodbye to my patient that I have had since September. I will have seen her 20 times. It's sad but also it's time. She is ready. I have helped to get her there. I'm not solely responsible and would never say that I am. I have been a part of it though and that. Well. That's why I am what I am, a Naturopath. And I am well enough in myself to support someone else and to get there to where I am. I must remember that. I feel like a bird sitting on the edge of the nest getting ready to soar into the sky, and soar I shall. And it's terrifying but perfect.
And so with love, hope and happiness,
XXX
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