Avastin Diary 6 – BSL Nurse and 5th Treatment

This is the latest instalment of the Avastin Diaries Blog series, to read the previous articles click the links below:

Avastin Diary 1

Avastin Diary 2 – First Treatment

Avastin Diary 3 – Second Treatment

Avastin Diary 4 – Teamwork and Third Treatment

Avastin Diary 5 – Waiting, Trainees and 4th Treatment

[Picture Description] The lovely picture attached today is the tiles that decorate the corridor at children’s oncology – I love them every time we go!

18th May 2023.

Sam emailed to say she was doing Oscar’s bloods in school this week & she asked how Oscar had been. We knew what time for Avastin this week as I had previously emailed them.

Hoping for a clockwork week this week, but it definitely wasn’t to be! Luckily I had a supply of food and drink today!

Oncology was a bit busy again today, I was immediately greeted by nurse Izzy, explaining I was deaf she proceeded to fingerspell that Oscar had come for his “Bevacizumab” (see Notes below) – it got a bit long and confusing so we resorted to pen & paper like the olden days! – And I said “Avastin” is far easier to spell and remember!!!! (Don’t make work for yourself!)

Nurse Emma is on today also. We sat down, nurse Izzy checked Oscar’s BP, temperature, pulse, weight, and urine. Izzy was fab we had a great conversation that she had learnt some sign language a few years ago. I love it when people make an effort to sign or communicate with me being deaf. It really makes my day when people make such an effort, it’s the thought that counts – even if its slow, not quite right or whatever!!!. I commended Izzy and said how lovely it was that she tried. She was great at fingerspelling and knew a few basic BSL signs – but it all makes a massive difference to me when I meet someone who may even only know basics! Just a signed “please” or “thankyou” is great!

After the usual checks the on-duty doctor came for a quick chat and to make sure Oscar had been well. She talked about drinking and especially how it was even more important now the weather was warming up.

We then tried for the cannula at 2.45pm, but more problems after trying 3x in both hands!! Oscar got very upset this time and cried because he was having a difficult time. The doctor spied a nice vein in Oscars inner elbow/arm so it was decided to put on the quick numbing cream on there and try again.

We had a small wait for that to work before finally 3.45 and the cannula was in but it was a messy affair and lots of blood this time. I had a feeling Oscar was going to be showing some bruises from all the prodding.

Oscar finally started his 30min infusion.

I was right about the bruising though which appeared Friday morning.

Learnings from this week…….. (Another steep learning curve)

  • Expect the unexpected still!
  • Need to try and get to the bottom of the cannula problems and why its not easy because when we have cannula for MRIs & there is no problems – so need to investigate a bit.

 

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

NB – Avastin is also known as bevacizumab

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. 6 – Half term and 3 appointments!

 

This blog has been created as a way to share real 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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