Well my lovely bloglets,
It’s been a while I know. It’s strange I have so much great stuff going on at the moment but have been feeling a bit meh. It’s definitely to do with not sleeping enough and I can only blame myself for that. I suppose also slight money worries. I have had two patients a week for a few weeks which is really good and I’m thrilled about it! But as it happens with what I do, and part of my ethos is to educate, so I’m no longer needed, the decision was made that enough has been achieved with one for them to carry on alone. I know I will get more, I’ve only just started, I know I’m doing what I’m meant to be doing, it’s still a bit daunting. I’m also writing a weekly nutrition blog post which is amazing and a really good thing for me because it reminds me how much I know, and keeps me looking for new info etc. If you are interested in me and a Naturoptahic approach to nutrition it’s here: http://theyellowdressproject.wordpress.com/youtrition-with-katie/
So, it’s been a pretty cancer-tastic time recently. I have finally started writing my book/guide thing, so hopefully I can keep working on that writing regularly and get something decent done. All has gone a bit quiet with the publisher who contacted me, but if I have to find another, I will and just hope that what I write is of interest.
I have been doing more things with Leukaemia & Lymphoma Research. I don’t know if you remember but I’ve been to a couple of focus groups with them. They are now expanding into patient experience rather than just research, so of course, being the gobby person that I am, I go and give them my opinion. Whether they want it or not. So guess who is being filmed next week?!? ME!!!!! Ha ha ha. I’m so ridiculous. They are doing films on the different blood cancers and obviously my experience is so important, if not THE most important EVER so I’m going to be on their website talking about it. Obviously I’m ignoring the fact that I’m not the only one who has been asked…. I went in last week to talk about me, myself and cancer, and as always, when I talk, I’m thrown back and things process. It’s good. It’s why I do it. It needs to be done. And it’s so amazing that my bad experiences as well as the amazing can help others. Talking about the bad can help change that for the good for someone else. And that’s why I do it. Not for me. For others.
I have also been at another interesting focus group thing but I’m not sure how much I am allowed to talk about, so will be annoying and won’t. I also have the monthly steering committee for the research study I am a part of on Monday. AND I’m speaking for Macmillan at an event I think on Thursday at a place in Borough Market that basically only does chocolate. I know. Amazing.
I also got a bit of rage. Unsurprising I know. I saw on Facebook that Facebook and Apple are going to pay for their female employees to have their eggs frozen. Part of me understands that it’s an amazing thing to be offered and paid for. Another part of me thinks that it’s outrageous. I had IVF ( and I can’t actually put into words how grateful I am that that happened and I have my eggs and if I am infertile I can hopefully have my own baby ) as part of my cancer treatment and I had to pay. It makes me SO angry. Couples who can’t seem to conceive naturally have a go free on the NHS and….
I do my best not to abuse the NHS and take responsibility for my health and do the best I can for me. I also don’t want to be taking my drugs and hate that I cost so much. However, it does upset me a lot that his happened. But. Breathe and relax. It was years ago. The money borrowed has been paid back. I have them. Why should I get angry? Well. It’s not fair. That’s why.
I have my check up in just over a week and I will hopefully find out if I am able to extend my egg storage or not. The hospital agreed with me 10 years, and in 2 years, unbelievably, it’s up. If I can’t extend the freezing then I will be having a baby, fingers crossed, in the next two years. Which is terrifying, but also maybe what’s meant to happen. I will also have to negotiate time off treatment as I will want to, if I can, breast feed for at least 3 months. I don’t know if I will be allowed a year or a year and a bit off treatment. As I say, this discussion might not to happen yet, but it’s there in the back of my mind. As well as the cost. Will I have to pay for that part of the IVF as well?
And on a baby note. My niece. I am so in love. I get to see her about once a week and she now smiles at me when she sees me. Seeing that, I mean, there are no words. Babies are a little bit of magic.
In so many ways I am free, I am lucky, I am here. But my life is not fully my own. And that is hard.
An angel wing…it’s still with me, I have had a little look at pictures but there hasn't been one that has grabbed me. Maybe I will get someone to draw one for me.
So as you may be able to see I’m a bit up and down, but in general all is ok, and it will be better after I’ve had a few nights catch up sleep of 11-12 hours. And apparently I was hungry and didn't know it so have now cheered up immensely! I love food.
With love and hope,