I want to start this post by saying I’m ok. I wish I could say I had some good news though. Sadly my Hickman Line is still not working!Those of you following my story will know this is the 3rd Line I’ve had inserted in the last few weeks.
Today I went for my 5th cycle of ECP treatment and the first time this line was used. Despite the best efforts of Ali and Anna who are fantastic nurses, the damned line would not work. They are completely perplexed and were going to email the great and the good for some advice as to what to do next.
It took a few attempts to cannulate me but eventually we were up and running. It took 2.5hrs to complete the treatment today which was good because we got away just before the rush hour.
As for my GVHD symptoms. I still have sores in my mouth. They are slowly getting better but occasionally flare. The paste and glue which goes on is really effective. My eyes are often dry and feel out of sorts. My guts really hurt most nights after eating. It’s a horrible pain but only lasts about an hour. I find a hot water bottle helps. My muscles and joints are still out of sorts. It’s like the skin is tight on my legs and I cant bend them properly. I also can’t make a fist in the mornings. When I get out of bed the ministry of funny walks kicks into action.
Despite all this I remain as cheerful as I can. I try to get out and do ordinary things. The other day I went to see the film Breathe. If you haven’t seen it, do make an effort. It’s inspirational. Absolutely amazing what the human spirit can endure and overcome.
I have met two brand new human beings in the form of William and Bonita and had some lovely cuddles.
One of the things frustrating me just now is loosing things. I guess it’s the last vestiges of chemo brain. The latest thing I’ve lost is my rather expensive car key. If you are the praying type please pray I find it. Maybe we need to evoke St Jude who is the patron saint of lost causes. Lol.
As the evenings close in it can be easy to only see the darkness. What helps me is knowing that it’s only when it’s dark that we can see the stars.
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