Nightmare day & a break Saturday, 4 June 2011 at 19:39
Taken from my original diary on Facebook
We were up at 6am Friday & left at 7 for the journey to Southampton. Mum picked us up in her car & then I drove. However some engine problem lights came on so had to come back 1 minutes on ourselves to swap to my car. We just about made in time for 8.30 after Charlotte grizzling and crying all the way for food & drink. She was nil by mouth as she was to have a general anaesthetic when we got there. We saw Dr Sheila and was really pleased to be told Charlotte was 1st on the list for her bone marrow biopsy. She was in & asleep by 9.20 and awake eating breakfast at 10.15. We then saw our consultant Jan who is a really lovely lady. She explained that if Charlotte's results weren't what they were hoping for she would have to go back there Tuesday for a new additional chemo drug.
After the stressful journey there it was great to go straight in and then give Charlotte the food she was begging for. But then things went wrong again. There was some uncertainty over whether they or Poole were giving Charlotte her IV chemo drug, once clarified they ordered it up from the Pharmacy. What no one had told us is that they don't administer IV chemo drugs until all the bone marrow & lumbar puncture procedures had been finished, so that takes you to nearly mid-day. I checked a couple of times if they had come but was told that the drugs don't necessarily come up in order from the pharmacy. By this time I really had had enough of the noisy play room on top of Charlotte's steroid grumps. By 1.30 was really losing it as so frustrated & tired...after complaining was told there had been an error & her drugs hadn't been sent up so they had to send a nurse down to collect them. It was our first visit back there effectively as an outpatient and I just wasn't prepared for all the waiting and coping with Charlotte's behaviour in such a busy place. The other children have been on treatment longer so the daft thing is that I was uncomfortable because of Charlotte's behaviour but the other parents have already been through this phase and fully understand. You look at the other children and its good to see them so calm about the whole thing so have to remember Charlotte will get past this phase, but then its hard as the other children have all lost there hair and we have that to come. I'm sure she will manage it better than me. I think the hair loss is like the main obvious sign as to the fact that Charlotte has a cancer. The ironic things is that she is familiar with hair loss due to my alopecia and mine is starting to show so maybe I'll shave mine to match Charlotte. Charlotte was finally given her chemo meds at nearly 2. By the time we had dropped Mum off it was 4pm when we got back to Poole. To add to the frustration I was told that as a one off the bone marrow results wouldn't be done the same day as the consultant who reviews them had a lecture...so the time when the result is one of the most vital we're being kept waiting.
Saturday: What we really needed today was a few hours away from the hospital. We spent a lovely few hours at my Mum's with Victoria & the boys. Charlotte loved seeing Harry & Louie, she's really missed them. I enjoyed some big cuddles off of them both. After lunch Mum took Charlotte for a walk in her pushchair & I went back to mine to sort out some washing & enjoy a lovely Radox bath. We got back to the hospital at 5 just in time for the meal (the food here is actually very good for hospital food).
Found the following prayer on here today from the Sisters in Christ page at a time when some peace would be good.
Heavenly Father, we come before You...the God of Peace...and ask for an extraordinary filling of Your perfect peace...the peace that passes all understanding to blanket our hearts and minds. Father, we KNOW that we have the mind of Christ; it is ours in You. So we claim that mind this day. So when we choose to move our focus from You ...to our calendars and our circumstances, TURN our faces back toward You. Direct us to Your Word or a song or grant us a sweet nudging of Your Spirit. Keep us focused only on that which is excellent, lovely, and praiseworthy. When we feel anxieties rising up within us, lead us by still waters, quiet our hearts, refresh our souls. We KNOW peace is ours in Christ; we believe it, now help us with our unbelief. We love you, Father, and thank You in advance for the precious peace that will fill each of us each and every day. And Lord, use us in the midst of our busyness to be a blessing to others!!! In Jesus Name I pray, Amen.
Saturday: What we really needed today was a few hours away from the hospital. We spent a lovely few hours at my Mum's with Victoria & the boys. Charlotte loved seeing Harry & Louie, she's really missed them. I enjoyed some big cuddles off of them both. After lunch Mum took Charlotte for a walk in her pushchair & I went back to mine to sort out some washing & enjoy a lovely Radox bath. We got back to the hospital at 5 just in time for the meal (the food here is actually very good for hospital food).
Found the following prayer on here today from the Sisters in Christ page at a time when some peace would be good.
Heavenly Father, we come before You...the God of Peace...and ask for an extraordinary filling of Your perfect peace...the peace that passes all understanding to blanket our hearts and minds. Father, we KNOW that we have the mind of Christ; it is ours in You. So we claim that mind this day. So when we choose to move our focus from You ...to our calendars and our circumstances, TURN our faces back toward You. Direct us to Your Word or a song or grant us a sweet nudging of Your Spirit. Keep us focused only on that which is excellent, lovely, and praiseworthy. When we feel anxieties rising up within us, lead us by still waters, quiet our hearts, refresh our souls. We KNOW peace is ours in Christ; we believe it, now help us with our unbelief. We love you, Father, and thank You in advance for the precious peace that will fill each of us each and every day. And Lord, use us in the midst of our busyness to be a blessing to others!!! In Jesus Name I pray, Amen.
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