Tuesday, 12 April 2011

Just another long day ....

Well I'm at the hospital again. We got here nice and early in the hope that we could get out by lunchtime and enjoy some of the last sunshine in the local pub. I can't believe we haven't learnt our lesson...it's now 12.30, we've been here 3 hours and I havent even had my Zometa and fluids, let lone the velcade!!

Apparently something went funny with my blood so I had to redo them! I have seen the doctor though which is good. She seemed pleased that I've been well enough the last two days to clean our patio slabs and surprised that I've got the peripheral neuropathy already. It looks like my neutrophils are back down at 0.9 which is very low and means I have to self inject again tomorrow ....don't like stabbing myself with a needle but looks a necessity for me nowadays. I don't know my other results yet but will ask for them in a bit!

so at this rate it looks like we could be here for at least 2 more hours...hmmm that'll be a nice £10-£15 on hospital parking...I swear they delay us on purpose!!

Well, we finally got out 5.5 hours after we walked in, with a £12 parking ticket.....like you said below Sandy, it really isn't fair, but nevermind....can't do much about it. We're lucky that a lot of the time my sister will drop us in (she lives 5-10 minutes round the corner) and pick us up and that helps out loads.

Anyway, I managed to self inject myself no problems today so I no longer have any worries about doing that again in the future. The needle is really thin and you barely feel it go in, so it sounds much worse than it really is!! There has to be one benefit to the stone I've put on since I started treatment! The belly is perfect for injections....lol!

I got them to give me my total protein leveles too. Now, as I think I've said before, these are not clearly linked to paraprotein levels, but they seem to have been to date for me, and are often used as a cheats method of assessing what the paraprotein (pp) might do. Now when I saw my consultant she was getting me ready for the worst.....and I'm trying to stay that way. Her view was that whilst my pp's may go down a little, that they could just as easily stay the same at the end of this first cycle and that I shouldn't be disappointed if they did. They are at 27 at the moment.  Now, (and don't get too excited here), if the total protein, little cheat that it is, was to suggest decreases similar to past experiences, I have a feeling that my pp may go down to under 20!!!! And with that I would be really pleased. REALLY REALLY pleased.

Just to clarify, we want my pp's to be as close to zero as possible by the time I have my transplant. And if possible we want that to happen within the next 4 cycles, so that I don't have to go through any further chemo before the transplant. As you know if you read this a lot, it really takes it out of me, being on the velcade, so if I can get down to zero in 4 cycles, it would be fantastic. If I don't, they may put me on up to another 4 cycles (each cycle is 3 weeks) until I either get to zero, or show a plateau. So we will see, but the perfect scenario in my head, as much as the transplant will be tough, is to get on with it as soon as possible!!
So today has been a long day, but a pretty good day, so long as my thoughts on my pp's are correct. Tomorrow I get my kiddies back who have stayed with the grandparents since Saturday night, and I have to say, I can't wait. I have missed them loads and whilst it has nice to have some peace and quiet, I do feel so blessed to have them both. I may not be saying that by the end of the Easter holidays, but for now......bring them home!!!

1 comment:

  1. They ought to give patients a break on the parking!!! It's one thing if it's just for a visitor, but it seems quite unfair if you have to go there for a necessity.

    As frustrating as it is to have to wait, at least they checked your blood first. Intending that things speed up a little so you can enjoy that sunshine. It's raining here...


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