A bit of a false start.

Had my blood test today and as I had already guessed from the shocking way I feel at the moment my HB is back down to 8. This is a pain as it means I now have to have another blood transfusion so instead of iron tomorrow I am now getting blood. Then I am away next week to watch my amazing friend do her bit for the Olympic torch carrying and the following week I am booked in for the dreaded colonoscopy. Apparently I cant have iron within the 2 weeks leading up to the colonoscopy so it is now going to be another 3 weeks before I get my next infusion. Feels like the one I had was a bit of an irrelevance now as it is no use as a one off. I also had my serum ferretin tested today but I won't find out the result until tomorrow, I'm not expecting any real improvement in that though. I am happy to be getting a transfusion as I feel terrible but its a shame that it puts everything back so much.

                                                                      My alter ego!

I have also had blood taken to test my CA125, this is the marker for ovarian cancer and I have so far refused to find out what level it is at. In a healthy person it should be below 30, the last time I found out the result of mine it was over 3000! I think I am ready now to find out, all being well it will hopefully be back into normal range, that for me would be a dream come true as it would be a good sign that I am doing OK at the moment. I have also been booked in for my scans in 3 weeks time to have a good look around and see if everything is looking clear. On top of this I have asked for a second opinion on the surgery they want me to have. So far I have dug my heals in over this but I do want to do the best thing for my health so have decided to get some more information and keep an open mind :)

Sometimes having blood transfusions really freaks me out, when I think about all the different blood from different people that has gone through my veins it really blows my mind! It is incredible that it is even possible to do it and even more incredible that there are so many lovely people out there willing to give blood in order to keep me and many others alive. Amazing! Back in the day when I used to donate I never imagined I would ever be on the receiving end and now I have lost count of how many pints of red cells I have had, not to mention the platelets on top of that. An amazing number of amazing people!

This really is a long road but I guess if I keep plodding along I will get there in the end!

I guess I better get my butt to the gym tomorrow night and use that juicy goodness while I am bouncing off the walls lol!

Becoming a local...

So here I am for the 1st time in quite some years living back in a tiny little village. Its not just any old village its a lincolnshire village, you are not classed as a local unless you can prove at least 6 generations back have been in the area!!! Moving here was a big decision for me, I had quite a nice life in Peterborough, despite not being a big fan of the city itself I had some good friends, a lovely gym, easy access to everything I wanted and brilliant travel links. I guess really I could have carried on as I was, quite happy but deep down I knew I needed to change some things, in particular my job. There were some exciting, fascinating and truly amazing aspects to my job in the prison but on the other hand it really could be a disturbing place to be. I had reached a point where watching another human being cut themselves and ligature themselves and generally harm themselves, even try to end their life would not evoke any feeling inside me. That is not the person I want to be and so I needed to get out. Anyway, I digress! The main reason for my move was time out and that is something I could not achieve living on my own. As much as I value my independence, I needed so time where I didn't have to stress about work etc and could just take some time to fight.

Well, the move was not without hitches, I left my job, had my phone stolen, crashed my car, moved house and scored myself a week in hospital with a nasty infection all within the space of a week! Eventually though, I ended up here in a lovely little wolds village called Hagworthingham back in the mother ship, surrounded by beautiful countryside, 20 mins from the beach and able to spend as much time as I like with my little sister. Surrounded by dogs and horses and chickens. It didn't take long for me to settle into the pace of life (it has taken a little longer to adjust to the absence of shops, cinemas, a Virgin Active etc!). I am taking a great deal of pleasure in the simplicity of my life at the moment, other than the obvious, there is nothing stressful. Its all good, clean wholesome living and I am starting to feel an inner calm, its nice. My life for the past 13 or so years has been the biggest roller coaster ride, the craziest things have happened and I have been through such a lot. This time now has literally been like a medicine for me. I was mentally and physically drained but gradually my zest for life is being revived.

Despite coming  here for a break, I seem to have crammed my schedule full to bursting, I am working in the local pub around 30hrs which I love and is a brilliant way to get to know the locals, find out the gossip and to generally start to fit in, I volunteer at the primary school around 20hrs a week which I am also enjoying and learning a lot. I am also volunteering at the local swimming group and am training to be a coach! Plus I have some work for a friend and I am about to start a GCSE so all in all I am more busy than I was before but the difference being everything I do now makes me happy. In between all of this I am fitting in as much gym, horse riding and dog walking/running as I can! I don't know where I'm fitting in the resting though but never mind!

                                                    Life in the country is suiting my soul

As for becoming a local, that is a long way off but I love that everywhere I go, people know who I am, I am starting to make friends and I can honestly say this was a good decision. I miss my friends a lot but hopefully when I have my car back and a bit more money we will be able to see plenty of each other, I'm not so far away. Not once have I looked back and regretted leaving my job. I am poor but I am happy. That to me is the most important thing. I have no idea what is around the corner, but I look forward to finding out :)

                                                       I think I have mastered the above :)

The big E.

Today was the long anticipated/dreaded upper GI endoscopy. After 13 hours of nil by mouth I would, in fairness, have allowed anything to be done to me just to be given food lol! Having taken the decision to go sedation free but with a trail of horror stories behind me I went in there prepared for anything but also with the knowledge that the gastro guy is one of those funny, geeky guys who can be intimidated just with a bit if eye to eye contact so I was confident that should he hurt me I could have him squirming in seconds. Just on this note he is a funny fella, big and round and Indian with a very nervous disposition, the more intently you look at him the more he stutters, hours of fun to be had :)

Anyway, I was led away with the nurse and various forms were completed and the same info repeated as I already knew. I then changed into a gown and took up position on the trolly. Surrounded by equipment and screens and gowned people the nerves started to kick in but a few deep breaths and a bit of a stern word with my self and I was all good again. The lovely mother figure nurse (there is always one for these types of occassions) said soothing things and offered to hold my had. Sweet offer but I was not quite at the hand holding stage of distressed so graciously declined! Then it was all systems go, the spray was applied which made me feel like I couldn't breath but once I realised this was not a real feeling and more of an illusion created by the numbing sensation (a lot like taking poor quality cocaine but thats another story!) I was OK. Once satisfied I was numb they brought out the big toys and my mouth was kept open by a clunky plastic thing with a whole in it. Once the camera started to go down my throat I did not like the sensation and it was time to go to that special place where nothing can get to me, a skill I have developed over the years and is very useful in these situations! The whole thing was uncomfortable and unpleasant but not really painful. I wouldn't choose it as a hobby but it was fine. The good bit was I got to see my insides on the big screen, how many people get to do that?!!!

The whole thing was done and dusted in about 40mins, biopsies were take, I had left my special place and I was released back into the community like nothing ever happened. Two of my lovely friends came and met me for lunch with the 2 little ones so a few cuddles, some laughs and a banana milkshake to sooth my throat and the world was fine! My throat feels sore now but not too bad, think it may be worse tomorrow as it feels like bruising that will potentially come out some more but as I seem to have got off quite lightly with the trauma side of things I'm OK with that!

So, after a luch and a lovely catch up, I made the journey home which was the only clue the proceedure may have affected my brain as I ended up lost, twice. Goodness knows how when its a straight road and I have done it a million times but anyway. Its a good job I'm getting highlights, I definitely need to be blonde!!!

So, that was my day... All that worry for something that really was completely surmountable, this is the lesson in life I am learning time and time again. Nothing is ever as bad as your mind builds it up to be and and if you are going to have to face something then face it full on, guns blazing.


http://www.youtube.com/watch?v=vEZDP_NVklc&noredirect=1

This is my kind of life anthem at the moment and I think it says it all :)

Iron and fiddling consultants.....

So, yesterday was a hospital day for me. I know, you're surprised! Anyway, 1st had to see 'my' consultant, I say my but in actual fact I have never seen this dude before in my life and no offence to the guy, I hope I never have to see him again! I miss the simpler times when I had Mr Shafi and he knew me and I knew him and I could be confident that putting my life in his hands was the right thing to do, hey ho, things change. My 2nd appointment was to get my long awaited iron infusion! I have been promised this for weeks but each time it gets close I end up needing a blood transfusion and it gets delayed so I was very happy that it all went ahead, the 1st of many I believe but its a start :)

Looks a bit grim but hopefully it will do the trick and I can stop with my vampire activities!

Anyway, back to the consultants meeting, said meeting was ordered due to last weeks impromptu trip to A&E and the gallons of blood that were pouring out of me... I know, its a lovely image but at least YOU didn't have to wake up to this thinking perhaps you had been stabbed, secretly in the night! All the usual stuff happened at the meeting. The standard tell me whats has been happening question which infuriates me every time as I know damn well its all in the notes which are sat on the desk in front of him but for some strange reason they like to hear it from the horses mouth. This was followed by the standard prodding and poking and the examinging of areas that really should not be looked at on a 1st date! Its a good job I have no shame left! Followed by the ordering of yet more scans and the conclusion that I have yet more tissue build up that is continuosly breaking away, causing bleeding and pain and that the best option is a proceedure to remove it and another proceedure to prevent its return. Brilliant you might say, however I have heard this all before, 3 times infact! 3 times I have had this proceedure that will prevent it from happening again and yet here it is, happening again! So you will forgive me if I am somewhat reluctant to jump staright in there and let them loose on what is left of my lady bits, I think I would rather live with what I have got thank you very much.

So, that was Friday, guess what I get to do Monday, thats right, I get to go to the hospital... Yay! Monday is the big endoscope day, I have been backwards and forwards with thoughts about sedation etc but I have finally decided that I am going to go with the no sedation option, I feel comfortable with my choice and althoughI know many people will think I am off my head, I know it is right for me. This is one of those mind over matter situations, so long as I can remain relaxed it will be fine. Not feeling too nervous, just want to get it out of the way now.... I will report back on whether or not I made the right decision!

As for this weekend, it is mostly work, although I am heading out for a meal for the 1st time since my Coeliac diognosis so this could be interesting. Wish me luck on finding something I want to eat... I'm thinking you can't go wrong with a nice juicy steak... Bring it on!