I have not blogged for awhile as I have had alot on since finishing my course and much of it has given me food for thought. As I said in a previous post I requested to see a psychologist as my head was all over the place with the transplant saga. I really did not want to go when it came to it but decided I couldn't carry on the way I was so I took a deep breath and off I went. I was expecting it to initially make me feel worse as stuff got dredged up but I was not prepared for the onslaught of emotion it has bought about. One thing it did do was clarify some of my thoughts about things I needed to find out to help make a decision and what the core issues were. So having worked out the former I went in to see my consultant the following week for my routine appointment and I asked him the questions that had been niggling-some of them unconciously. What transpired was that what I had feared that I had been living a lie for four years was mostly correct. I could have gone on the transplant list then and would never have had to live with what has come to be seen as my core issue. It took quite awhile to come to terms with not being able to ever have a transplant unless some miracle occurred but the most difficult thing to get my head round was the way the surgeon delivering the news went about it. He gave me lots of time scales as to when a transplant would be an emergency and then they would consider it but I would have to be aware that it was 50/50 it would kill me. As I had gone to the appointment with the idea that I was going to be listed for a transplant but wanted all the risks outlined this was the last thing I was expecting. Further more he ranted about how he would have to live with it if the worst happened as well as my family and friends if they did a transplant then when dialysis was working well for me. It has to have been one of the most traumatic moments of my life and for some reason it was an appointment I went into entirely alone as I had a strong feeling I should do so-don't ask me why as I always have someone there but I digress. So this is the core of my distress that I came to terms and coped with something so traumatic and now the anger and upset has kicked in knowing this should never have happened and where we are now we should have been then. I can't even think about the lost time and what my life could be like now as that is pointless but it makes it all the more clear that doctors have to be so careful in the way they say stuff. I actually think if I hadn't had some of these other things said to me at that time then I wouldn't feel like I do now to such an extent.
During the session we also touched on the loss of Sara and the psychologist said that is two massive things to have happened and she doesn't know about all the other awful things too. It is a good job that there doesn't seem to be a maximum number of sessions as there are in some places as there is alot of material to cover. Although I don't think I can completely tell her everything that happened especially where the kidney group is concerned but that is slowly resolving itself anyway.
The group is so far removed from what Sara envisioned now with so much back biting and poison going on I am glad to be away. It no longer feels like what we all started and certainly the idea of patients being supported is at best laughable. The only thing that has the capacity to upset me now is the veiled references by the members left of how important she was and how hard it has been for them all. I totally agree with that and of course I am feeling it too but I don't need to publicly write it on message boards and more over IF they felt bad why can they not see that I did too and treated me better. But to be honest I get the sense it is used when it suits others to do so and to make a point which is too complicated to go into here. I am no longer in touch with any of them and although I thought there was at least one who would stick by me it turns out that this is not to be. I hope we can still be friends but they are now being very distant and I feel completley abandoned. But then maybe starting again is no bad thing when it comes to it.
Anyway onto the good stuff. I am stitching quite a bit and really enjoying having a bit more time to do so. I started my big brother marathon and after two weeks I am making good progress on my Margaret Sherry design. I also finished part 3 of MIX and I am a few hours away from finishing this entire rotation round. Angel of the morning by L&L is the final piece and she is nearly there. I am certain she will be finished this year and hopefully in the next few rounds and I am just in love with the piece. I also only have May on my Mini Kats to do before I order the next two and that means excellent progress has been made there too.
I am also deciding which OU course to do next and keep wavering at the moment. I thought I had made a definite decision yesterday but on thinking carefully about it I saw some flaws in the plan so I am re thinking again lol. We are having a tutor group reunion in Bath next Friday so maybe talking it over then with the students and our tutor may help. This evening is going to be an informal celebration of the course finishing and as I have to work out the logisitics of travel I came clean and said I am not being awkward but have medical issues. They were all fantastic about it which put in stark relief that there are good people in the world who are prepared to help and understand. It is what I expected of people in the same situation so when it didn't happen that was a shock and made me wary of coming clean, but it goes to show that if people are basically decent then it is not an issue.
There is also something else I have been keeping to myself for a long while now and that is that I am going to become an aunt in November. We knew right at the beginning as my brothers girlfriend had quite a few problems so he rang my mum for advice. But she is coming up for the last scan so all is going ok now. It is exciting but hasn't been without some problems here as mum adjusted to the idea, but as she has got her knitting out I am sure it is fair to say she is pleased. :-) Whether they decide to know the sex they don't know yet but as mum is knitting in white it will be fine.
Finally we booked a holiday in Lanzarote for the end of September. The place looks really nice and the dialysis unit has good machines and is staffed by many English nurses and has apartments attached. These apartments are next door but separated by a garden so we won't be right on top of the unit, has a pool and each one has a terrace or balcony. I have dialysed away from home before but never abroad so it should be an exciting experience. In fact I have never been abroad or on a plane before so it will all be very new and I am looking forward to a good break. If anyone has been and knows of some good things to see and do that may not be in the guide books please let me know.
Progress w/e 18th March
4 hours ago