So... finally home, finally able to see and spend much needed time with family. I can't really express what it's been like having to try and switch off all those thoughts and feelings about missing home and the kids and just trying to knuckle down into the last few rounds of Radiotherapy... but we did it, and to be honest, even though it was only last week it already feeling like a long time ago. As I think I've explained before it's not uncommon for radiotherapy to continue working for a fair few weeks after treatment has ended. This seems to be the case this week. My throat and mouth are feeling very sore and the back of my throat seems to have a whole new set of open sores that have appeared this week. This is making eating a painful and challenging ordeal, but I'm determined not to end up with a stomach feeding tube (PEG) like I had last time, so I'm sticking at it. I've only lost about 7kgs in the last four weeks, so I'm hoping I can keep it at that rate for the next month or so until things start to settle. I've pretty much lost my voice to. I think the strain of hacking up a good couple of pints (no exaggeration!) of rubbery green and yellow phlem during each night are playing a big part. I remember this phase well from last time and I'm just trying to hang on the knowledge that it's not for ever and will improve in time. The burns on my face are sore and itchy but settle quickly using an Aloe gel a couple of times a day.
No voice, facial burns, fatigue, and random painful spasms in the back of my neck have made it not just difficult to get out and about, but has made me pretty reluctant to accept visits or be around people at the moment. I really want to see people, but Im not sure I can actually offer that much in return... other than someone who will most likely whisper for a few mins and then pass out. I came to the conclusion the other day that I'm best off hanging on till things improve. It's still been really cool getting texts and messages via other means. At least I can respond without running myself into the ground.
I wish there were more to tell, but between lots of hugs with the kids, sleeping a lot and watching films there hasn't really been too much going on. Each day at the moment is a tricky obstacles course of trying to eat 1500 cal, getting medication done in the correct order at the right time and trying to stay positive in some way. All these things have required more effort than I remember this week. Despite being home and having everything I've missed for so long right in front of me its been very frustrating in many ways as Ive not been able to engage with it all in the way I want to. It still feel is like I'm sitting on the sidelines of daily life unable to fully participate.... but again, I know it's there, it's just a case of being patient and committing to the seemingly endless daily routine... Take the drugs... try to eat... get the rest... REPEAT!
Bethan and the kids have been great, really helpful and very understanding. I've had a few enquiring conversations with Joel that usually begin with questions like "So what if you still have Cancer and he doctor can't give you anymore treatment...?"... those ones are real tough to find an answer to in my own head right now, never mind providing a rational explanation to a 7 year old who needs you in his life. It's all very tough at the moment... and I keep having to say "things could always be worse" to myself, but It been s heavy week so far and I know it's far from done.
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