>Following yesterday’s down day, I’m feeling a little more perky today. The kids help no end….you just can’t sit around moping with them and that is so good for me at times as I think I would otherwise!!
Yesterday was so hard though. I didn’t seem to be able to stop crying all day. And then interspersed with that would be the thought of throwing a glass across the room!!! Nick asked if I could make sure he wasn’t around if I did that! It all just seemed so unfair and so wrong. Why had I gone through 4 months of tiredness, sickness, and feeling rubbish to get this sort of result. I just felt exhausted and like I didn’t quite know how to keep going with it all. Silly really. My lovely sister sent me a bouquet of flowers all the way from Beijing (well I’m thinking it was probably from here somewhere, but you know what I mean!) and even those made me burst into tears.
But today has been a little better. I cancelled my plans for the day and the kids and I have just been having a nice day doing jigsaws, playing games and reading. I’m not quite ready to be talking about it all with people at the moment, so it is so nice to just be with people who don’t get it…bless the little lovelies!!!
Nick and I wrote to the Marsden last night to see if they could give us an indication of what they thought of the figures. Funnily, this morning, I got a copy of the letter that they had sent my GP after last weeks appointment, and that made me realise even more that it was likely they’d pull me off the revlimid. By 10am this morning, I’d had a response from them saying that they agreed that it looked like I had only achieved a minimum response to the Revlimid and that I would probably be put through to the next part of the trial with the randomisation to velcade/ transplant. They have arranged an appointment to see me next Tuesday which is great. They also acknowledged my concerns at going straight to transplant at this stage and that was something that was worrying me as I thought they may bully me into it. Hopefully if that is what I get chosen to do, they will help me with the right decision as I would imagine I’d have to come off the Myeloma XI trial.
I was so impressed that they came back to me so fast. It makes you feel like you are vaguely important and that it isn’t all about people through the door. So off we go again next week. Here’s hoping Nick’s work are ok about all the time he takes off to come with me. I’m a bit nervous about that, but he really wants to be with me for the appointments now (understandable!) so hopefully his work will be ok with him.
So, next step could well be velcade for me….I wonder what that will be like….arrgghh….must stop getting ahead of myself!