Day one done…

…..6 more to go!

Is it strange that is still doesn’t feel quite real that I’m starting chemo again. Even when the nurses were injecting it into me it didn’t feel real! I cycled to work and the hospital like normal (nurses think I’m nuts!). Granted I’m a bit tired but that’s from my besties Hen party at the weekend, nothing much to do with my illness! To be honest I wouldn’t even really know i was ill if it wasn’t for bruises and the blood test results!

Today went without any issues…… Signing the consent form first. Doctor taking me through all the various things the chemo can do to me….Reduce my bone marrow function (reducing red cells, platelets, white blood cells), cause gastro issues, blood clots, organ issues, soreness around the sight of injection, potential hair loss etc etc etc…. What fun it is to go through that! Luckily the last time I had this drug I didn’t suffer too much other than mostly fatigue, so hopefully it will be similar this time round.

Then the nurse hands out my take away drugs….. something to make me poo…. something if I can’t stop pooing….Something to help the nausea…. steroids for inflammation….. And then two nurses stab me with way to big smiles on their faces as I’m whinging that the steroids are going to make me fat!! ha ha!! (Steroids didn’t use to be part of  the regime with this drug, and to be honest I think I might ask to not have them as they weren’t necessary last time. Will see how I go and if I think they are being helpful or not)

Its always with mixed emotions I go to haem onc. I love a catch up with the lovely nurses,  and randomly a good friend I met during previous treatment, but don’t like some of the memories and associations! For the time being I’m just going to try and focus on well I’m feeling and not to dwell on the past. No point!

I did manage to have a little 2 minute chat with my consultant at Peterborough today. i asked him for his opinion on my treatment plan, and he has a similar view to me…. We have tried the aza twice before, maybe now its time for something different. But the problem is what is that??!?! He says there are drugs being trialed in America, etc. Potentially kings might be able to access some of it??? We will see. I’m keen to get the full results of my biopsy and talk to my kings consultant again soon. See what they have to say.

In the meantime, I will slog through this first round of aza, get my top up of donor cells and hopefully be working towards keeping it at bay for the time being. But I’m looking forward to a proper action plan, with a bit of grunt behind it!!

5 thoughts on “Day one done…

  1. Lesley Kalina

    You are crazy but amazing…was good to see you today looking so well. I’m angry and gutted Emma but you will get through this and I’m seriously here for you lovely. Lots of love. X

    Liked by 1 person

  2. Interesting to read about your chat with your consultant. I’ve been on aza for four and a half years until recently when it was decided that it’s become too toxic for me. I’ve been offered a chance of a clinical trial for Guadecitabine. It’s from an American company. I’m in France and I don’t think there are any trials of this drug in the UK at the moment. I’m a little worried as it’s a blind trial. More chance of getting the actual drug but could be intensive chemo or best supportive care! I’m too old for a SCT at 77. Here’s a link to the drug. https://astx.com/research-development/clinical-pipeline/guadecitabine-sgi-110-dnmt-inhibitor-relapsed-refractory-mds-or-cmml/#top

    Hope the aza does what it’s meant to do for you – you’ve managed so well with all your other challenges. x

    Liked by 1 person

  3. Lucy

    Hi Emma, I’m really sorry to hear you are having this setback. I hadn’t checked your posts for a while so came on to get some inspiration and positivity after a not-so-positive visit to King’s for me. And despite the fact that you aren’t having a smooth ride your determination and optimistic approach remain a boost to people like me. So much of dealing with this disease is a rollercoaster ride and the mental side of it is currently the toughest for me. I read a lot about mindfulness etc but have to get better at actually doing it. I figure if I can reduce my “suffering” by learning to train my mind to stay present rather than create horror-movies then that has to be the right approach. Anyway, perhaps we can meet at King’s for a coffee one day…In the meantime I’m willing you on and will keep checking here for how you are getting on. xx

    Like

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