So much to do, so little time

Now I know it’s the same for everyone but I’m really struggling at the moment to find enough hours in the day. Thank god I’m not back working yet! What with looking after the kids, trying to organise the ball and being ill, I just can’t quite keep up!!!

But generally things are going well at the moment and I am actually considering whether I could hold down work for a few hours a week. I need to see that I’m well over the next month or so, but assuming I am, I’d like to try to get some work. I’d hoped to do some voluntary work but that hasn’t come to anything so my first port of call will probably be to go back to hsbc whil I suss out how I cope. If they don’t want me, I want to get back into proper old fashioned personnel so may well offer my services to some companies for free to see how it goes while I get myself up to scratch again with HR law!!

But in the meantime, my health. Well, I had my appointment last tuesday and it went pretty well. I had asked to see my consultant as I wanted to talk through being ill so much to understand if the revlimid was the cause. Funnily she had wanted to talk to me anyway as my neutrophils had dropped to nearly 0.6 which is very low. She wanted me to have an injection to raise them but we also agreed to drop the revlimid dose. This was for 2 reasons. One is that she felt strongly that maintenance therapy is supposed to give you a good life, not make you ill. My transplant in the summer was supposed to mean that I could hopefully get a couple of years at least where life goes pretty much back to pre-diagnosis levels. And so far that’s not happening. Secondly it turns out that with at least one of the trials that showed revlimid to give a benefit, they had started patients on 25mg and dropped them to 10mg after 3 months. Well, I’ve been on 25mg for 3 months so I’d be doing exactly that. So my one fear that I’d be losing an opportunity is redundant which is great. Also, where I thought it extended my life, wrong again! They don’t know that yet. What they do know is that they think it can extend remission by up to 2 years. And they hope that will have a knock on effect of extending life prognosis too. Every year they extend it for me gives me the hope that just perhaps I’ll still be here when they find that cure!!!!

Right, I’m writing this on my iPhone which takes forever so I think I’ll leave the ball update till next time! Busy week ahead so I need some sleep.

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About Deb Gascoyne

I am wife of one, mother of two and a person in my own right :-) I have used my diagnosis of myeloma to allow me to focus on what I CAN achieve and not what I can't. My blog is a way of me spilling out....it is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-)
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4 Responses to So much to do, so little time

  1. Scott Haigh says:

    Really good to read you are on the mend…….
    Debs, how is your memory?
    Mine is awful, I am having to use the calendar on my phone more and more!

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    • Deb Gascoyne says:

      Hi Scott
      Thanks for the message. The memory isn’t too bad but then again I rely on my iPhone for appointments anyway. I do find I can’t remember what I have going I from one day to the next, but then again I do tend to keep pretty busy with the kids fundraising etc!!
      Hope you’re doing ok??
      Deb x

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  2. Until recently, they did not have studies that showed whether maintenance extended life. Studies did show that it extended TTP (time to progression) but the logic was that then one was not responsive to that drug anymore so it was not in the arsenal once the patient relapsed. I just heard recently though that studies are starting to show an increase in OS (overall survival) with Rev. maintenance so these protocols are starting to show evidence now that they
    have been in use long enough to show what happens later. Still early in this game as Rev. has not been around too long but the news looks good for extending life.

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  3. Scott Haigh says:

    Hi Debs,

    Yeah I use my phone for all my appointments too – and yes I can’t remember what I am doing day to day. I go to University a couple of days a week and sometimes can’t remember which rooms I have to be in, even though I was there the week before. I’m sure it gets better…..

    Just had another checkup and all is ok, I feel quite stressed when I go and see the specialist, and I am sure most myeloma patients are the same. I’m not on the maintenance arm of the the trial so its all left to nature now.

    Nearly eight months post transplant and I feel as though I almost have the energy to exercise properly again, two stone I have added to my stature in the last 14 months – how scary is that??

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