Whats going on in my world

Again its been a while since I have blogged and quite a lot has happened!! I’m going to do two separate blog posts…. one about me…. and one about politics

Kings Appointment – All going well 🙂

Yesterday I went to Kings to get checked out. My bloods were great; wbc 5.2, hb 127, platelets 122. They are really pleased with how I’m getting on. My fatigue seems to be getting slowly better and other ailments are reducing. I’m beginning to feel a tired version of normal!!

We discussed the idea of having my one year bone marrow biopsy just to check if everything is ok. I think I have been almost persuaded to have it; my argument was y bloods are great so there’s no need, their argument was that the biopsy can detect any problems a lot earlier than blood tests so we would have more chance t0 nip any problems in the bud. We have agreed to wait and see if there has been any improvement on my chimerism (% donor) if no improvement then I will have the biopsy just to check everything is ok (JOY!!)

We also discussed iron collation. Currently my iron (ferratin) levels are over 3,000 which is over 10 times the amount it should be. Once my Haemoglobin levels have improved a little more then we will start doing venesections once a month to draw off a pint of blood and lower the levels.

Dodgy Sinuses

I went to see an ENT specialist at Guys hospital the other week about my sinuses. I still have problems with post nasal drip (a.k.a lots of mucus dripping from my sinuses into my mouth), a lot of mucus in general and fluffy hearing. Unfortunately he says there doesn’t seem to be a great deal wrong with the anatomy of my nose, the left side could possibly benefit from being operated on to widen the canal but it might do more harm than good. The main part of my problem is due to inflammation which is why it gets worse when I am run down or unwell. The only real treatment that can be offered is similar to that for Asthma which is steroid sprays and a regular wash out with nasal saline sprays/ neti pots.

Fitter and Stronger

Every week I seem to be getting fitter and stronger. I am back lifting weights, running and teaching classes again and boy does it feel good!! I’m starting to feel alive! Granted after a class I might need to rest up after, but I enjoy it so much its definitely worth it! I can also see that my muscles are returning and I am getting stronger. Heck, I even managed to do a handstand the other day!!

Brain Power

As well as all the fitness I have also been testing my brain with my PT/Yoga qualifications. It was my theory papers the other week for my level 3 anatomy and physiology and nutrition exams……. Amazingly I passed first time!! I still have some brain power left in me. I do already feel like that the knowledge has already escaped my brain though, need to work on retaining information for longer than a week!! Any tips welcome!

Really enjoying using my brain again though. Its giving me the confidence to feel like I am ready to take on work again. Still waiting for all the HR stuff to be sorted out, but hopefully should be looking at getting back to work by March, all being well!

 

Feeling Thankful!

Today marks one year from receiving my new stem cells. The one year anniversary of my “rebirth”, my new life, new beginnings, my third chance at life!

Here I would like to say thank you to my two stem cell donors. Without both of them I certainly would not be here today. I would also like to say thank you to all of those who have joined the register as you could have been a match for me, but more importantly you could still be a match for someone else.

I am also so grateful and deem myself so lucky to have had the funds approved for this second transplant. At the time, I didn’t realise quite how lucky I was. It is only now where I am having to watch people die and suffer whist waiting for funds to be approved (if they get approved at all) that I do realise.

This time last year I was in a hospital bed, feeling lousy, but not yet the full effects of my chemo. I was weak from the past 4 months of hospital stays with various infections and previous rounds of chemo but my spirits were relatively high in the hope that this would get rid of the cancer for good.

As I write this (3^rd Jan) I have just been planning a step aerobics class to teach tonight. Who would think that one year on I would be back teaching aerobics again? I certainly didn’t! As this was the 3^rd time my MDS had relapsed and after a rocky recovery period I thought I would be a participant for the rest of my life especially given that at some points in my recovery I could barely walk a mile. But yesterday I taught my first freestyle aerobics class and tonight I will teach my 5^th step class!

Fatigue is still an issue but can be worked around – teaching an aerobics class is one hour out of my day so it’s easy to nap around it! The next step is now in progress with setting up a plan for returning to my main occupation in loyalty analytics. This is a huge step in getting me back to normality, however I have already decided that this will only be part time. After going through so much in the last 1.5 years (well 12 years if you consider the whole journey!!) I have realised that I want to ensure I make time for me and my health and working part time is part of this.

So back to work in the next few months – fantastic – BUT the main take away from this is that I’m well enough to work! I’m not stuck in a hospital bed. I’ve managed to fight off some mini infections without having IV antibiotics being pumped into me. I’m physically strong enough to teach an aerobics/weights class. I’m mentally strong enough to be considering taking on new challenges of going back to work. Ignoring work I’ve managed to travel abroad . Heck – I’m doing my own washing, driving myself around, going shopping, cooking my own dinner, reading books again, crafting again, etc etc! Anyone that has been through similar illnesses will know what big wins these are 🙂

However all of this could not have been achieved without the generosity of my two German donors. (And yes German – because there aren’t enough of you Brits on the register! If this isn’t a good enough reason to sign up then I don’t know what is!!)

Thank you!!!

 

 I had a group of friends from work come in to support me (much frowned on by the nurses but we managed to convince them to let them all in!) and we had a good giggle and celebration as my new stem cells entered my blood stream!