Treatment 17 and 18 – November 2023
We managed to get a weeks break from Avastin after our results which was lovely before we were back to hitting the ground running again.
Shaz play therapist has been around in November for both treatments which has been a relief. I feel she is a bit of a backup for me with trying to help Oscar with cannulation, she kind of takes the stress and strains away so its always lovely to see her.
We had a lovely new doctor doing cannulation on 9th November and after the normal stats were taken, we got on with treatment and everything went well. The weather is getting colder now so Dr Sarah advised Oscar to start wearing gloves when coming for treatment to make sure his hands are warm.
Our next visit on 23rd truly didn’t go like clockwork at all – in fact a bit of a disaster. To start with ‘live transcribe’ my speech to text app wasn’t working because Samsung had decided to do a software update & the update is not compatible with the version of live transcribe on my phone – grrrr. Battles with the doctor and cannula followed this and a massive 5 attempts for the cannula. Oscar got so very stressed and anxious this time and even Shaz could not talk him round, we had many many tears and he ended up walking out of the treatment room extremely upset because he felt the doctor wasn’t listening to him.
I know many of you follow this journey and we are thankful that Avastin is doing its job keeping the tumours stable, but it really is gut wrenching sitting in oncology every other week watching the Drs trying to get the cannula in for the infusions, sitting and crying with such stress and anxiety because it won’t go in and having to try everything possible. You know how upsetting it is watching your child go through that, trying to reassure them it will all be ok? …. and hoping that actually it will be ok. Sometimes, many times in fact I am lost for words. I have to tell him, yes I want to take your pain away, but I am sorry I cannot do that and we have to find a way to cope – which yes means that getting the cannula in will hurt and for that I am sorry. But equally we are on a different wavelength together. I have been around NF2 for a long time now and I hope that I instil some resilience in Oscar to cope with these things, or indeed anything life throws at him. That he is brave and courageous and an inspiration himself. He has taught me many things along our journey together.
We have the option of a port-cath BUT if we go down that path, Oscar cannot play football because contact sports are not allowed with ports. I cannot take away the football because that’s the only thing keeping him going mentally, physically and emotionally. Sports and physical activity are ESSENTIAL for wellbeing. But Avastin is ESSENTIAL for keeping NF2 at bay.
We did eventually get the cannula in and did eventually start treatment, but it was a late & dark finish.
I am counting down the days until the next scan & results so we can spread this out more so that it does not become the burden it is at the moment.
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
Thankyou to everyone who sent me information about side effects – this has now been published here: Avastin Diary – Side Effects Special
— Joanne Ward
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