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!

Radio star has been set free

It has been an eventful day or so!

I had been liaising with Bloodwise creating a press release about my AA/MDS journey to be shared as part of blood cancer awareness month. After sending the press release around I got asked to call in LIVE to BBC Radio Cambridgeshire at 7:40 am. Now anybody that has stayed in hospital will know that I would definitely be awake at that time, however the chances of not being disturbed are next to none!! I pre-warned the producer of this and one of the HCA’s kindly produced me a sign:

After a not so great nights sleep worrying about not waking for the show and what to say ( and also nurses waking me up at 11pm, 1am, 5am and 6am for observations and antibiotics!!) I got the phone call at 7:35am from the producer checking I was ready to go on live! Gaaahhh!! Nervous!! I wanted to make sure I didn’t say anything stupid, and that I did a good job for Bloodwise and other patients suffering with MDS/AA or other blood cancers.

Overall i enjoyed it and think it went ok. I did feel like I had missed out bits I wanted to say or wouldn’t have said some its if I’d known how short the feature would be, but oh well!!! You can judge for yourself (28 days left to listen – wind forward 1hr 4om)!!

http://www.bbc.co.uk/programmes/p031ssc1#play

After all that drama I then found out the microbiologist had found a different antibiotic my SUPERBUG (ESBL) is sensitive too which meant I could go home!! Woop!! (I also think the consultant walking in on me midway through a headstand in my room probably helped to prove i was “clincally well” too!) So now I’ve been switched to the new IV antibiotics i’m at home and free, I just have to go to hospital once a day to get my IV. I am on strict instructions though that if i start to feel unwell I have to go straight back in. Apparently I am very lucky as ESBL is a really nasty bug that should have floored me, but luckily we seemed to have caught it really early.

So now I’m home….. I had a great nights sleep with no nurses shoving thermometers in my ear and turning the lights on at 3am and feel refreshed. I cycled to the hospital for my antibiotics today (I won’t go into the hospital trip and the 6 attempts to cannulate me!!) and then returned home to do a headstand! After a few months practicing this was the first time i have been able to hold one long enough for a photo to be taken…….

Who would think I got out of hospital the day before?!?!