As the milestone of a year since my transplant approaches I can honestly say this has been the toughest year of my life so far both physically and mentally.
Mixed emotions I am eternally grateful to my donor without them my story would be a lot different and possibly shorter! A Thank you doesn't seem to cover it they have given me a chance at life. I am at the same time disappointed that a lot of my ailments I had before transplant are still here with many new ones, I suppose I haven't yet found my new normal as they call it. We had hoped I would be further along in my recovery by now but everyone is different and the timescale is like how long is a piece of string.
My family and friends are my rock without their support I couldn't imagine being able to get through this treatment, it is such a major thing and turns your life and the life of those around you completely upside down. While I am concentrating on staying well and alive they have put their lives on hold to support me whether it be financially, emotionally or the everyday things and many journeys to London. It all takes its strain on everyones lives not just your own.
The main thing is I am still here nearly a year on progress is slow but it is progress and everyday we get that little bit closer to my new normal and life itself. You wonder at the start how will you cope with all the treatment and pain, chemotherapy, bone biopsies over and over again, hundreds of different tests, transfusions, hickman line and all the rest, But you know what you do cope you do get through it a positive attitude goes a long way. Yes you do break down at times I think you need to have that release but you pick yourself up and battle on.
So onto my usual update of progress, since my last blog post I finally know after years of pain what is wrong with my back slightly slipped and bulging discs. Some new meds to try and see what works best for me always a relief when you get a diagnosis not knowing whats wrong is so frustrating.
My bloods are not too bad at the moment which gives me a break from the neutropenia and worrying, at my next appointment I am hoping a decision will be made about my donor top up.
One thing I am struggling with is my joints, my knees and ankles hurt when walking and my knees seem to of given up working properly. Getting stuck in the bath because my knees just wont work and I Also got stuck in the supermarket crouched to get something form the lower shelves and couldn't get back up without grabbing at the shelves. My dog who is getting on bit is now overtaking me on the stairs with a bemused look on his face.
Overall I do feel a bit better as the nausea is so much better, I can deal with pain but I am not great with nausea.