I Have a Mutation!

Here we are again, day 14, the end of another cycle with cycle 5 beginning tomorrow.  So how has this cycle gone?  To be honest, not well at all.

To begin with, there was good news.  When I got to day 1 of cycle 4 not only did I not need a blood transfusion, but I was told that I had a mutated gene.  This means that Iam a suitable candidate for some kind of superdrug they could add to the chemo which has the potential of expanding my life expectancy up to a year.  So from 3-5 years, we go to 4-6 years.  Great news right?  Cause for celebration.  Of course, there are side effects, so much so that this superdrug comes with it’s own compulsory add-on antibiotics!  Fine, for another year, we’ll take the antibiotics, a few more pills aren’t going to make much difference.

The problem has been that the tiredness brought on by the new combined chemo regime has made life as I knew it non-existent for the past 2 weeks.  Here at day 14 of cycle 4 I am still unable to find the energy to do anything.  Mikael has taken me out for coffee a few times, which has meant I walk a few steps to the car, a few steps from the car to the coffee shop, and then back home again where I collapse on the bed as if I had ran a marathon.  Another of the worse side effects this time has been the amount of mouth ulcers which meanst it hurts to talk, and eat.  Not being able to talk to Mikael, and more especially our boys (who like to debaate philosopjy, history, religion etc for hours) has been really hard, and despite the pain, I have still had to talk with mam every day for an hour otherwise she would speak to no-one and become more confused about things like what day it is.

So today we were at the hospital for the routine bloodwork ready for tomorrow, and told the nurse about what happened.  I feel such a hypochondriac when listing out all the side effects I have had this cycle.  She will talk to the Dr about it.  I told her that if the superdrug gives me no life while it is being taken then there no point in taking it because without it I have 8 days out of every 14 when I can forget all the problems and just get on living a more or less normal life with my family.  However, given that it may be doing some good I’m willing to compromise with a half-dose and see if my body tolerates that better.

I have to say that Mikael is a star.  When he’s at home he’s in and out of the bedroom to see if I need anything and keeps the cream cheese and crackers coming.  He’s also pretty much single handedly running the house.  Despite the exhaustion, I have managed to do supper this past week, and that’s been a struggle, but otherwise, Mikael’s taking care of everything – especially me.  I am so blessed to have him as my husband.  I try not to be needy but some days, well some days he probably wishes he was somewhere else – especially when I ask him about the state of laundry room……!

In other news I bought a new toy for myself.  It’s going to make such a difference to my stitching because it die cuts fabric. No more wobbly edges.  I am so excited to have it, but I haven’t even had the energy to take it out of the box.  Also another side effect has been that the tops of my fingers have been affected by the drugs – it attacks the skin so really I have been incredibly lucky not to have faired worse in this regard, but it has meant that I can hardly type never mind hold a sewing needle or crochet hook.  I really hope we can do something with this coming cycle so that I be more productive.

I’m prepared for the worst though.  I know that maybe this new cycle may be as bad as the last, and so I have Amazon prime video, and a number of TV series and movies already in my favourites box all ready to distract me if that’s the best I can do.  Acceptance Katie, accept what is inevitable and move through it with as much grace as you can muster.  Bright light at end of tunnel, only one more cycle after this next one, and then it is assessment time to see what improvement has been made. 😊

Thanks to everyone who continues to support my journey.  Your good wishes help get me through the rough days.

11 thoughts on “I Have a Mutation!

  1. Katie-Anne, you chose your blog name well, Grace and Serenity seems so apt for you just now, I’m in total awe. I popped in to visit Hazel in Newbiggin yesterday, she sends her love…. she is running through her own problems with dementia and mom at the moment, so she will feel for you on that score! Huge and very gentle hugs my lovely. Each day as it comes, I feel quite helpless at the moment but you are in my thoughts and prayers.

    1. Thanks sweetie. Please tell Hazel I’m asking after her. You are not helpless, you sent a message of support. That means so much. Yes I chose the name because that’s how I want to handle this. It’s something I have to hold myself up too. On the real crappy days I struggle and then at some point in the darkness a little voice says “and exactly where would you rate yourself on a scale measuring serenity and grace today Katie?” And that makes me chuckle and I start to fight a bit harder against whatever is pulling me down that day. Hugs to you my friend.

  2. If you can’t get milk of Magnesia, I’ve got the replacements for the stuff I shipped and hasn’t arrived (and I know why, but I’ll get the official email first cause the gits are refusing to give me it in writing, so I’ve kicked off), I’ll send some. I can send you some dermocare stuff as well for when I was really sick with staph and my skin was peeling on my face and chest (eurgh) if you like?

    Kai

    1. Uh oh, what went wrong? Don’t stress yourself on my account or will ban your ass! Seriously! You have enough to deal with. I love you little sis, but you have so much on your hands at the moment that I don’t want you worrying about me. I’m still here and fighting on. For the moment, all is fine. I’m handling it. REALLY! 🙂

  3. I have nothing really useful to say. You’re in my prayers, my thoughts. It’s all I can do from here, I know, but it seems so useless. I love you.

  4. Big hugs.

    I know advice is probably the last thing you want but I just thought this might be of some use – my son had a serious bout of mouth ulcers and the doctor recommended swishing with milk of magnesia mixed with liquid tylenol (usually sold as baby tylenol).

    1. Thanks Sara. I will see if they have milk of magnesia here in Sweden. It’s not something that I have so far come across. I know we don’t have Tylenol, but we do have a liquid painkilling equivalent.

  5. Kämpa på Katie! Känner verkligen med dig – hoppas nästa omgång blir bättre. Massor av kramar från oss.

    1. I’m fighting the cancer, but sometimes fighting the side effects just takes too much energy – better to let them run their natural course and then I can move forward. Doesn’t help that I am missing all the family birthday parties! 🙁 Hope there will be some sweet treats sent from yours this coming weekend! 🙂

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