It's been a tough week so far, hanging in limbo once again. My mum is staying with us at the moment which has been amazing. She is one of those people who just rolls her sleaves up and get the job done. Beyond that it's been a comfort to have someone close to talk to about all this. Don't get me wrong, friends and family have been overwhelmingly supportive, but there's certain things that only your mum understands. I've been really struggling to sleep this week. I'm finding that I'm waking up at exactly 2:15am every night and it takes until about 5.30am until I can get back to sleep. This is leaving me tired and grouchy through the day and it makes it much harder to keep a positive outlook about the situation. The kids have been struggling to. Joel has become very rude and aggressive towards everyone, much to our despair, as this is not the little boy we know. I'm still not feeling that well. I walked into town day before yesterday and met with friends. I have to say, it felt like running a marathon. I got home and slept all evening. This lack of energy plays a big role in Joel's attitude at the moment. It's clear to see he's angry because he doesn't have acsess to his dad in the way he needs. This only adds to the enormous guilt that I feel about putting my family through this. It also hightens my awareness that things are going to get much worse before they get better. It's easy to say "you shouldn't feel that way", but I do. I see and feel the daily impact this is all having on everyone and it saddens me. The hardest thing in all this is not the pain or the risk of the treatment, or not being able to do the things I love, it's this overwhelming fear of my family losing me. The thought of the pain that would cause in them is what keeps me awake at night. I know this is very upsetting, personal stuff, but I need to vent this as I'm so tired of dragging it around with me day and night. I know 'it ain't over till it's over' and I'm going at this full tilt with regards getting on with the treatment ,but there's no escaping the severity of what is going on here.
On a slightly lighter note. I forgot to mention in the last post about 'Nasal Dooching'... yeah, me either??? During the last meeting with Peter Clarke he mentioned that I should now be nasal dooching twice a day. This involves boiling up water and letting it cool to body temperature, adding a perscribed mixture of salt and bicarb soda to a special steril plastic bottle. Then, while inserting the nozzle of the bottle into one nostril, squirt the contents up there in one go allowing it to drain out of the other side. If you need to, YouTube it. Aparrently it's a bit of 'a thing'. Expecting this to be a complete nightmare, I set everything up and went for it. As odd as it sounds, it was actally quite pleasant! The stuff that came out was incredible, but my nasal space and sinuses were left feeling amazing! Anyway, apologies of this post is s bit of a bummer, we are expecting the call with the all important results either Monday or Wednesday... so until then.
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