This is the latest instalment of the Avastin Diaries Blog series, to read the previous articles click the links below:
Avastin Diary 2 – First Treatment
Avastin Diary 3 – Second Treatment
20th April 2023 – The weeks are really going fast, and every 2 weeks comes around quicker than you can imagine!
After the last treatment we managed to get a few days away at the coast, its just what was needed after a busy few months! Oscar didn’t get any side effects, so we were just able to chill!
We were on the case this week following the previous complications. Drinks like they are going out of fashion – Oscar made a list of what he “wants” to drink as opposed to what I want him to drink! and we got loads of advice about keeping hands warm from the NF2 community – who continue to be AMAZING for advice!
Our community nurse, Sam, came the day before infusion to take Oscar’s blood test at school, she text me to ensure all was ok first – with instructions to drink, drink and drink and ensure hands were kept warm.
Avastin day, I collected Oscar from school, put his numbing cream on at home, put gloves on him and we arrived to an empty clinic! (We had walked up the 16 flights of stairs (4 floors) as apparently exercise gets the blood flowing!!!)
Anna, the oncology nurse was on duty again, she came to see us, did BP, temperature, pulse, height and weight check followed by urine check.
We saw Dr Emmanuel again and had a quick chat about side effects and today’s infusion before putting Oscar’s cannula in. Took 3 attempts today as there seemed to be a lack of blood in his right hand (luckily I had put numbing cream on both hands – bonus points to me!)
We were then ready to start. As Oscar had tolerated it well last time the infusion time was bought down again to 30mins this week.
Just 1.5 hours from start to finish today. Bluebell bear accompanied us to oncology this week & ensured Oscar kept his hands warm! It was all about the teamwork this week and sticking to the advice the NF2 community had given us!
NB – Instead of having a cannula at every visit you can ask about having a port line – I explained this on the 1st blog
NB – If your little person does not like needles etc you can have numbing cream (EMLA) or spray which numbs the area before they insert the cannula
One of the side effects that many told us about is tiredness and fatigue after treatment. Oscar wasn’t particularly affected by this, but its something we will look out for in future.
Next time –Avastin no. 4 (but physio first)
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This blog has been created as a way to share stories, ideas, positivity and even sprinkle in some science. Everyone is welcome here and warmly encouraged to join us in contributing to our community through this blog. If you would like to add anything (anything at all!) then please contact myself, Grace Gregory, at grace@nf2biosolutions.org and we can pop it up on our blog. Watch this space and please join in helping us all connect and share with one another!
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