I hate to say I told you so…..

And I really do hate it this time, because despite being right I’m the one that ends up losing!

So on Friday I received a phone call from King’s with (almost) the full results of my recent bone marrow biopsy. Unfortunately despite the 3 rounds of chemo I have had, the results show that the level of cancerous blasts in my bone marrow is the same if not slightly increased. They are still trying to do some cytogenetic testing, but apparently the sample taken wasn’t the best and they are struggling to get the results.

So what does this mean? I’m not entirely sure yet. The doctors are still discussing me. They are suggesting moving on to more intensive chemo but haven’t decided what yet. It is a bit of a balancing act trying to kill the disease, without losing the transplant. They have been discussing going for a third transplant. They have been discussing some clinical trials, but unfortunately I don’t tick the criteria boxes for those having already had a transplant. The have been discussing some weird and wacky options where they harvest my blast cells and essentially make a vaccine! So treatment protocol wise I’m in a bit of a state of limbo until they decide what is best to do!

But in a nutshell….. I was right…I wasn’t convinced the aza was going to work. One good thing is it has probably stopped the disease spiraling out of control, however it hasn’t got rid of it. But I really didn’t want to be right!! I really had hoped the doctors would prove me wrong!

In the meantime I’m currently sat in a hospital bed, hooked up to fluids and IV antibiotics and fluids. The back end of last week I started to show signs of the common cold. Sore throat, runny nose, bit of a cough and fatigue. By the end of the weekend I was running a fever and had to be admitted to A&E. Its “only a virus” but my body is trying to fight this virus with 0.2 WBC and 0.1 neutrophils! So I will likely be here for a few days being kept a close eye on!

To end on a more humorous note….. I just found one of those ecg stickers under my boob when I just had a shower. This was despite having a conversation with the HCA about finding these days after and us both being careful to try and remove them all!! ha ha!

Watch and wait

Just a brief one today from me…..I didn’t want to jinx it earlier on, to be honest i still don’t want to! However, my blood levels have been stabilising over the last few weeks. My platelets are soaring back up at 107 again. I am still neutropenic (have a very low immune system) but they are slowly creeping up. This means that I haven’t YET been admitted for my ATG treatment. It doesn’t mean I’m completely  out of the woods. My chimerism still hasn’t improved. However, it is fantastic news and I’m trying to enjoy my time at home!! My bloods will continue to be checked weekly and will have my chimerism re done in October to see if any improvement……. will just have to wait and see……

Post yoga weekend I’ve been sleeping like a baby so I’ve had a lot more energy floating around to try and focus on getting a bit stronger. Even been hitting it back up at the weights in the gym.

In other news I decided to attack my mop of hair today…… it was beginning to look like a mop head! Hope you agree it looks a lot better!!! If nothing else it looks like a hair cut, rather than just a grow out attempt. Might even go get some jazzy flowers shaved into my head or something! (before anyone panics I haven’t lost any length on the top so it is still growing, the sides will catch up later!!) One good thing…. when you realise you are bothered about your hair style then you know you are starting to feel a bit better 🙂