Tuesday, 5 October 2010

Hangin' On The Telephone

The last few days have been more than a bit frustrating. I am simply fed up of putting my life on hold for this disease. My plans for the next few months have been put in jeopardy because of the lack of support I am receiving from the NHS. I mentioned before that I was due to do some travelling for a few months with friends around Asia and then Australia. As I was told my next lot of Rituximab treatment would be given in September/October, I was forced to cancel the Asia part of the trip costing me money to change flights etc. So the plan was to catch up with friends to go to Australia for four weeks at the end of November. This, I believed, would leave me plenty of time to have the treatment and recover and would mean I didn’t miss out on seeing a bit of the world with my good friends.
I could not have been more wrong. Having RA and making plans has never really been a good combination for me. I previously have had to cancel a trip to Glastonbury festival because of a flare up, had a holiday in Egypt ruined because of a flare up and now it seems my ingenious plan of going to Australia is going to come back and bite me in the ass. You see, after calling (and calling and calling) the hospital where I am supposed to have my treatment to find out the dates I finally got my answer on Friday. And you’ve probably guessed that it wasn’t good news.
My treatment has been arranged for November the 12th with the second infusion following on the 26th. This is all well and good but I will actually be on the other side of the planet for the second treatment (as I am due to leave on the 21st). What an absolute cock up. I am only going by what I was told by doctors that I would be fine to do the Australia trip and that it wouldn’t take that long to sort out the treatment but I guess this was not the case. I am now fighting to have the treatment moved forward so I can still go on the trip. I am frankly sick to the back teeth of not being able to plan anything because of a flare up or impending treatment. The last thing I needed was a patronising nurse telling me I am not the only one in this position and they would get round to sorting it out when they had time. I have honestly never been so infuriated. When I questioned why they couldn’t do it earlier she was rude and unhelpful telling me simply they would get back to me in the next few weeks. Well that is not good enough.
I am now in Limbo. Unsure of what to do about my trip, as the treatment could be sooner if a home care company can take care of it, and I have no way of knowing what is going to happen. All the while, my trip draws closer and my upcoming plans are facing cancellation if I am suddenly told I can go in and have it. (They have a habit of leaving it till the last minute to tell me what’s going on).
So, once again…. I have no idea what to do and the thoughts of being left behind fill my head. Will this be the way I have to live my life? Always hanging on the phone, waiting for someone else to decide my fate?

1 comment:

  1. Ugh that's terrible, and Im so angry at how rude that nurse was to you. I dont have any constructive advice, but I hope you get something sorted and can go on the trip. For now, do something fun with your friends who are still in the UK to take your mind off the day's troubles! Try not to think about this incident as something that you're doomed to repeat your whole life.. things constantly change and there's no point worrying about the future.