August/September 2008 Update
Its been a very up and down month or so. I've moved house, resigned and left my job, Harry started a new school, we've just come back from a week in Spain and after having my most recent clinic appointment with my endo, I am not moving forward. Its incredibly disheartening and as I am a person who has to have some sort of focus I am finding it incredibly difficult coming to terms with the fact that I may never be cured. I am running out of options big time. The next step is for me to start HRT and I will hopefully begin oestrogeon replacements in the coming week or so. The next step arfter that is to go through testing for GH again. They feel I will meet the eligibility criteria but the fact it is taking sooooooo long to get on the stuff is mind boggling. My endo and I first discussed GH a couple of years if not more ago!!! I have always believed it was a major factor and why I feel so exhausted all the time.
Right now I am seriously contemplating a BLA. MY endo, neuro and Prof Grossman at Barts advise against it. They are of the belief that something will happen 2yrs after my radiotherapy - which is this November and having my adrenals is suppressing the growth of the pituitary tumour. Right now I am losing hope and just want to see some improvement. On the ketaconazole and the small amount of dex I am taking, I am able to function normally although I do get tired and weak every day, I am not doing too bad and can carry out normal daily duties like housework, shopping etc. However, its not ideal. I have even lost 5 lbs in weight. Not being a good swimmer and rather nervous in the water I pushed myself to try and swim a few widths on holiday and am proud to say I did it. My muscles killed me but I did it. I also walked alot too. I hope to carry on now I am back and see if I can lose some weight. I am currently 19 stone 3 lbs, the heaviest I have ever been in my life and it scares the hell out of me being this heavy. What it is doing to my heart and organs I dread to think, but the fact I am 36yrs of age and get breathless walking up a flight of stairs terrifies me and I need to get control.
I have a tough few months ahead but I am up for the challenge. I am fortunate that I am able to stop work. Its a struggle for us financially but the fact that my hubby is so, so supportive is a big plus and I hope I can do him and my family proud.
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