Hard Days.

Happy Easter everyone 

Life has been pretty challenging lately. I think that having had a blocked Hickman Line for a couple of months and not being able to access treatment has meant that my GvHD (Graft Verses Host Disease) has been very active. 

How this Manifests itself is that my muscles and joints ache like mad. My wrists and shoulders and ankles are particularly bad. I’m also suffering from a sore throat and blocked runny nose. My nose has been like a tap probably for the best part of 8-10 months. I’m presuming the GVHD is making it worse. I have dry blurry eyes. As you are aware from my last post I also have a very sore mouth. I’m exhausted all the time. On top of this I have horrible belly ache every day and I’m quite wheezy and breathless too. What a crock! 

This week is a busy hospital week. Tues I have haematology clinic. I have to be there 2.5 hours before my appointment time in order to ensure the doctor has my blood results by the time I’m called in to see them. Weds and Thurs is ECP (extra corporeal photoperesis) at Guys Cancer Centre and then Friday I’m in the Chemo day unit for my first of 4 Retuximab infusions over the next month. The first one has to be given over 6 hours as it often causes a reaction and needs to be slowed down. 

I feel like I’m dragging myself through life sometimes. My quality of life is poor. I’m desperate to go on holiday to a warmer climate and gently paddle and stroll on the beach. It’s been 3 years since I’ve been able to leave the country for that reason. I shouldn’t moan because I’ve had some lovely treats recently too. I went to Glasgow with MDS UK for the BSH Conference. The following week I went to Suffolk and spent some quality time with the extended family. This weekend I caught up with my cousin and dropped her back home to the Kent coast and went on to have a nice visit to the beach followed by a meal and Red Joan at the cinema. 

So even though I’m feeling rubbish I still try to do some nice things to create a bit of balance. 

I’m also aware that to day is World AML Day. This is what happens to some MDS patients whose disease progresses. Not everyone makes it and those I’m aware of being on borrowed time are held in the light by me. 

All any of us can do is make the most of the good days and enjoy our blessings as well as accept the love and support around us to help with the struggle. 

Sending light and love out into the darkness.