Tuesday, 29 March 2011

Expectations - Day 8 VCD

I've read a lot of blogs since I was first diagnosed. And I'm still not quite sure what the point of them is.....despite writing this one. I'm not even quite sure why I write this anymore....whether it is for me, for other people who want to know what is going on without hassling, for people who have been diagnosed and need to hear how it is......

Perhaps it just doesn't matter. I started writing it because I wanted a diary of what I felt and how this cancer was affecting me, but I'm not sure it has quite ended up like that. It is hard to be 100% honest about your feelings when you know that some of the people who read it would find that really difficult. And to be honest, I'm not the most 'eloquent' of writers!!! I've read some really inspiring blogs recently and for a brief moment they made me question whether I should carry on writing this. Just who exactly am I helping!!!

But I'm afraid I am going to carry on with it....after all, if you don't like the content, you can go and read the inspiring blogs and I can write to myself :-)

Anyway, the good news is that after a major blip on Sunday evening and Monday, I feel a lot more positive today. I slept a little better last night.....still waking every 20 minutes or so, but it felt a bit more restful and a little less stressed! Wierdly I did dream all night about the upcoming transplant...ironically linked to our Occupational Health department at work, the family and all sorts of strange things. But I woke up feeling slightly more refreshed and ready to face the world. Good really as Nick has gone off to Italy today till tomorrow night (back and then off on Thursday to Spain!).

Despite Rebecca choosing today to have her blip with life and with Nick going away (bless her), we all got off to school ok and I made the hospital. I was out in about 3 hours and in that time actually managed to dose for an hour or so which was a huge help to the 90 minute drive home. Still shattered now and will be off to bed in the next half hour or so, but I managed and there were no tears....always a positive! Not even the cost of the hospital parking made me cry today!

I am really loathed to listen to much to what other patients experience are with Velcade as I don't want to give myself an excuse to give up on doing stuff and life for the next 3 months....but the more I have heard, the more I think that perhaps it might be a bit of a write-off and that the sooner I give in to that and accept it, the happier I will be with it. Someone wrote to me today and explained what a powerful combination of drugs I was on. They know a lot and said that it was unlikely I'd be able to do a lot whilst on it. And scarily, whilst on revlimid, my drug free week was a great week, it sounds like on Velcade, you are totally wiped out on your drug free week......god knows what that will look like!!! I can't really imagine being more wiped out than I have been at times this week.

So my new plan is to lower my expectations.....hmmm, yeah right! I still want to go for a walk tomorrow, make fish mornay for the kids and a loaf of bread......oh yes and there's a bit of ironing and swimming after school. BUT, somehow, I feel a bit like if I don't manage one or two of those things it won't be because I'm a failure......and if I can stand by that thought, then I've moved on somewhere over this first week of treatment.


  1. I write a blog about our experience with MM and then throw everything else about our lives in. I think the main reason I do it is that it is cathartic. You write it all out and send it out into the universe and, in a way, it's getting something stressful out of you. Some people spend a lot of money listening to themselves talk in a tharapist's office. While I am not knocking that and did it myself many years ago, it's cheaper and easier to do the blog thing.I'm reading your blog, and interested in what you have to say and how you're doing. You don't have to be a poet or a comic to be interesting and relevant. Keep it up!

  2. Thanks Denise.
    I think perhaps you're right about the catharticness (is that a word???!) of it all. Appreciate you taking the time to comment on this....will try to keep it interesting as much as possible...lol!

  3. I started a crafty blog so I could promote selling stuff on etsy about a week before I anticipated having my stem cell transplant - yes how well thought out was that however it inevitably included myeloma and the mother in law!

    I had the temp spikes and anemia before starting the first cycle of Velcade so feel this influenced things. We'll see how the 10 days off go this time. And remember everyone is different.

    If you keep blogging I'll keep reading between sleeping and crafting of course! ;D

  4. I'm the cheerleader/intender on the sidelines... I have a relative with MM with about three years since DX and finally a successful auto STC about a year ago.I read the MM blogs to stay up with information to be a better-informed caregiver if called upon to do that, and to support finding a cure along with being the audience for the catharsis, I guess.


My family's snow fun!

My family's snow fun!

Snow Fun

Snow Fun