What's Next?

The bastard is in remission! After my last bone marrow biopsy it showed no signs of leukaemia. As nice as it is to hear, it’s also very scary. I can’t and I won’t allow myself to get my hopes up, because this bastard could rear its ugly head again at any stage. It’s a sneaky cancer that can be unpredictable. It’s because of this unpredictability that I need to have what they call the maintenance phase. After speaking with my team of doctors in Melbourne today this is going to start sooner rather than later, but the good news is I'm going to have treatment here in Ballarat! (insert happy dance here!!)

So far, I have tackled 10 months of treatment which has included:

·       25 x intravenous chemotherapies

·       Massive steroid doses on and off for the entire 10 months

·       2 different chemo tablets on and off also for the entire 10 months

·       22 x Blood transfusions

·       12 x Platelet transfusions (1 with a reaction)

·       12 x Lumbar Punctures (with chemo into spine)

·       6 x Bone Marrow Biopsies

·       3 x Hickman Ports

·       1 Stroke

·       2 x MRI’s

·       5 x CT scans

·       6 months of twice daily blood thinning injections

·       43 x Days in Melbourne Hospital

·       11 x Days in Ballarat Hospital

·       28 x Days Living in apartment in Melbourne.

·       Infinity Blood tests

The maintenance phase is another 6 months of treatment which will be 1 x intravenous chemo a month, as well as steroid treatment and then 2 different chemo tablets also. In comparison to what I've had so far, this should be a walk in the park. My liver hasn’t liked these chemo tablets when I have had them in the past, so we will be walking a very fine line taking these, but they are necessary. I will be very closely monitored which means more blood tests and more often, but better to be safe than sorry. I have been apologizing to my liver for some time now and now I’m praying very hard that it hangs in there and doesn’t give me any trouble for the next 6 months.

Life is somewhat returning to normal. Just the other day Gem said she felt like she has her mum back. This made me smile but on the inside, I broke a little. I carry so much guilt knowing I took so much away from my girls. I’ve been struggling a little of late with not allowing myself to get too far ahead. I’m scared of letting my walls down and allowing myself to look forward to things because I don’t want to be disappointed. As it is I feel like I am behind schedule because I should have started maintenance phase a month ago, but I couldn’t because of this bloody lurgy that took up residence in my sinuses. It wasn’t safe to start treatment as I would have got sicker and the lurgy could have killed me. I know, I know that sounds dramatic but it’s the truth. A small cold that is a hassle to many, could be fatal to me.

 I am feeling fairly good, but still getting very tired easily and not able to do what I would like to do. Each day I can do a little more, but I still have to be super careful of being around others and I can’t go out in public without wearing a mask and keeping my distance. I’m still a recluse and am now suffering anxiety again just at the thought of being out and about. A sinus infection has managed to flick the anxiety switch and drive it home to me again how easy it is to go backwards, so I need to think about what I'm doing and go slowly!

This beating leukaemia thing is a long haul. I knew from the beginning that it was going to be. I hate that I haven’t got an end date as I don't have something to work towards. I have had to go back to the mindset of taking one day at a time and not getting too far ahead of myself.

I hate that I am about to go back onto steroids. I was just starting to see my cheekbones again and wearing jeans but now I am going to go back to wearing stretchy pants and having to be ok with a moon face. Sleep will once again be nonexistent, and I will have the appetite of a pig! To top it all off my hair will thin and I’m hoping to God that I don’t lose it all again, but it is a possibility. It also looks like my crocs will still be getting a workout as my feet will be swollen and the kankles will make a return, but …..I’m trying to see the positives. It’s only for 6 more months.

Life is still on pause. I can’t make plans too far in advance because I don’t know what’s going to happen or how I am going to feel. So that family holiday I have been dreaming about will have to wait a little longer. I suppose it gives us more time to save for said holiday … see still trying to find the positives!

So, that is where I am at. I’m in the treatment chair for at least another 6 months, that is if we don’t have any hiccups along the way and my liver is kind to me. At the end of that 6 months, my treatment will only consist of chemo tablets and life will free up considerably. Until then my dreams won’t be as big, but I promise I will continue to fight and when I take that final tablet and all tests are clear, the celebrations and party of all parties will be planned! I will dance up a storm in my crocs, drink mineral water all night so I can be kind to my liver and enjoy hugging each and every one of you without worrying about germs and let me tell you those hugs will be long and awkward. I have some making up to do!

Keep praying, keep reaching out because I’m still here, I'm still me, I’m just in protection mode!

Kate xx