What does today mean to you...

Yet again it has been a while since I last wrote a post.  I suppose I started this blog for a few reasons, one as a type of therapy, in the hope that if I wrote things down and expressed my feelings it would help me get through the treatment and secondly, to keep friends and family updated on what was happening when I was stuck in hospital and not able to see everyone.

I have been thinking lately that the whole 'writing things down' thing is helpful and have decided to continue on with my blog properly.  A lot of how I think and feel has changed since my treatment and I am now at a stage where I am trying to figure out my place and how to live in the present.  I don't want to come across all annoying and 'new age' but the only way to explain how I feel is like I have seen the light and most of the people I know, or certainly people my age, have not.  I certainly don't mean that in a derogatory sense, I wish I hadn't seen the light to be honest but I have and I need to find a way of living with this new knowledge.  When I say that term, I mean that at the age of 30 I had all my current ideas of life ripped apart, I had to face head on, not only my mortality but also so much sadness, disappointment and huge let down, something that we don't generally have to do until a lot later in life. My hopes for life were wiped out because all I could see was bad things happening constantly.  When I'd get a bit of hope, it was taken from me. How could I ever trust that life could be good again.  It made me have a very pessimistic view of the future.

I remember a particular day before my transplant vividly, it was summer and I was standing outside my work place waiting for a friend as we were going for a drink that evening.  I was wearing a blue summer dress with coral embroidered flowers on it and it was a lovely summer day.  I was happy, i'd started a new life back in Northampton, was settling into a new job at Marie Curie that I loved and that meant something and I was feeling fit and healthy after signing up with a personal trainer.   On that day, in that dress, I had every reason to believe that life was good and that the future would be also.  Don't get me wrong, I've always been aware that bad things can happen but on a daily basis you just get on with life.  Fast forward to now... This is very difficult to explain but I'll try...Now I have lost that feeling of assuming or thinking life will be ok. That ability to live in the present and believe the future can be positive based on the assumptions of the past.  The experience of the transplant process, the first failing, a second transplant, then both my hips collapsing and both being replaced forced meto see life in a different way.  I no longer have those assumptions to underpin my life and happiness.  I have to find a way of believing I can be happy with this new knowledge I've experienced...the 'light'.  I hope that makes some sense!

I want to point out I am not blinkered, I know life isn't always a bed of roses.  I certainly know that from first hand experience but also from common sense.  It's not about wanting to be happy all the time and expecting that now, but about a more simple, paired down life in every sense of the word. Truly, and I mean truly living in a way that benefits myself and those dearest to me.  Looking at what really honestly matters.  It is a bit idealistic really... But why can't I live like that.  Why don't we all live more like that, it's much better for our minds and overall wellbeing.  Why slog ourselves through life, work, wanting this that and the other for some kind of gratification, who benefits? We don't, not really.  I want off that treadmill, I want to call the shots more, as best I can, on my life.  It's short and I'm already on a second borrowed chance. 

I have been embarking on a few things, not to get my life back, which is what I used to wish for, as for me that has gone, but to be able to live my new one.  I am feeing much more positive but I still have bad days when I cannot see a way forward and feel overwhelmed with what has happened, although they are less frequent now.  I know the time has come to move forward and I am taking steps to do that.   It has certainly highlighted that life after treatment is not plain sailing and support is most definitely needed, more so even.  When you are in hospital having treatment you are on a well oiled medical treadmill, it is when you get off that it becomes very difficult. 

I have embarked on a healthier lifestyle for myself and in turn Rich, and with his support we are now choosing a new and different type of life.  I'm not going to work full time, certainly for the foreseeable future, maybe forever.  It is something I feel unable to do, unable to comprehend.  Rather I am going to support Rich in his career and look after our home, cooking, washing, cleaning etc... A bit old school I suppose!  I now plan and cook all our meals so they are balanced and nutritious, bake all the types of bread we eat, plus things like healthy breakfast bars for on the go.  I cook everything from scratch from soups, stews, pasta sauces, curries, even baked beans using dried beans!  I am dabbling with vegan at the moment too and looking into nutrition etc...

I have been vegetarian since I as 12 years old and always been conscious of where food comes from but since being ill I am much more aware of chemicals in our food and environment.  I have had so many pumped into my body through the form of medication and chemotherapy and I basically don't want anymore if I can help it. 

I hope, once my hip/walking rehabilitation is complete, to find a little part time job.  The difference this time is that I will work really to earn a bit of extra cash not for career gain etc... But that I will have a different attitude, that is the biggest shift in thinking.   I just don't want the pressures anymore, why do we put ourselves through it.  My focus will be my life, myself, Rich and my closest friends and family, not money or work or anything else, that will be secondary.

We are also planning our vegetable growing for this year and expanding it so we can be much more self sufficient.  The hope is that we can move, in the not too distant future, to a village as we are looking for that kind of environment to live in now.  Although, I'm really thinking one day at a time right now but it is nice to have some dreams, my aim is to let myself think them rather than being negative about the future and what it could bring, to hopefully embrace that it might not all be bad. 

So that is a quick overview of where I am coming from, I think it is scary but also exciting and a positive way to move forward but most of all I have to do this, I have to find a way of living with my new thoughts, I am thankfully alive afterall! 

I will finish with an update on where I am now healthwise etc... as my last proper update was in June last year... There is lots of positive news actually which has led me to where I am today...

* I had my right total hip replacement on 10 July 2014 and my left total hip replacement on 13 November 2014.  Both operations went really well, I was only in hospital for 2 days each time.  Although it was painful, certainly the first one was worse as I still had one broken hip, it was nothing compared to the pain I had been in.  I am now in the process of pretty much teaching my body, posture, muscles etc how to walk again.  I am doing well, am down to one crutch but I get very tired walking as my body and muscles are weak.  I see a physio who is helping me and I have some ache/pain but again it is nothing like before so I accept it and feel able to cope with it.  I do feel a bit weird about having two artificial hips but there's nothing I can do about that!  The hope is that they will last a good 15 years and I can have each one done once more in my lifetime. 

* Rich and I are engaged! We got engaged on our anniversary, 2nd July at Chatworth House in Derbyshire, a place I love.  The wedding is on 7 November this year and we are planning that at the moment.  I suppose I should say we are also happily living under one roof and my flat sale completed just before Christmas.  We are very happy together, he is amazing, together we are amazing. 

* I am the volunteer member of the the new Anthony Nolan Trust Grants Panel which I find so rewarding and it is great to be able to do something to help those in need who are going through the transplant process, as well as give something back to the charity who helped me.  

So that was a bit of a heavy post but I'm back on track and my future posts will be more about everyday life, progress, things I do, make, bake etc... I hope!

I'll end on something I discussed with my psychologist about the meaning of life... Instead of stressing over what life means, pair it down to think about what today means to you in this moment, that is what matters...