Avastin Diary 16 – December & Scanxiety
Treatment 19 & 20 – December 2023
The first thing I wanted to talk about in the months blog is Imposter Syndrome.
Imposter syndrome is the internal psychological experience of feeling like a phony in some area of your life.
So what am I getting at?
Well we are sat in oncology (regularly) having Avastin and I often get the feeling that people think we are fakes – imposters and should not be here!
Afterall – Avastin is not chemo is it?
Bevacizumab is a type of drug called a monoclonal antibody or an angiogenesis inhibitor. It is also used to treat some types of cancer. The reason that we think it is effective in the treatment of growing schwannomas in NF2 is that it stops the development of new blood vessels in tumours. This reduces the supply of oxygen and nutrients, which means that the tumour shrinks or stops growing. It does not prevent blood vessels from growing in other parts of your body as it works specifically on a chemical secreted by tumour cells (similar to how your antibodies work when attacking an infection).
So why do I feel like a fake? Well, I get the feeling we are largely ignored on our oncology visits. That we aren’t important enough, but of course have every right to be there. Often those coming to the day care ward at similar times to us (or after us) are treated before us – even if the unit is empty when we arrive. We are very often the last to leave the daycare unit. So I don’t feel we are treated the same. Maybe it is just me?
As you know we also have several problems with regards to cannulation and (some) doctors could certainly use work on their bedside manner. Do they treat other patients the same??
Is it because NF2 tumours are benign?
Benign tumours are noncancerous growths in the body. They can occur anywhere in the body, grow slowly, and have clear borders. Unlike cancerous tumours, they don’t spread to other parts of the body.
But they can come with serious implications. People with NF2 are affected by Brain Tumours, Spine Tumours, Optical Tumours, Deafness, Blindness, Seizures, vocal chord paralysis, mobility problems, chronic pain, cataracts, facial palsy, mobility problems, muscle atrophy … & much more! Often and nerve damage caused by tumours is permanent and life changing.
NF2 is a life long genetic condition There is no beginning, middle or ending to any of our stories, no remission or breaks. Treatment options are limited to surgery/radiosurgery/chemotherapy which often results in loss of function of the involved nerve. (That can literally be ANY nerve in your body!)
So taking all this into consideration, we have every right to be at oncology and to be taken seriously and treated like other patients. But I am still made to feel like a fake !
Please do let us know if this is the feeling you get too.
Our first treatment in December went ok and our favourite doctor was on, so some happy chats about Nottingham Forest – but we are having more cannulation problems. Dr Emmanuel suggested his veins were getting tired and needed longer to heal. I am therefore counting down the days until we might be able to just do this by moving to a different treatment pattern.
Our Next scan is 5th January. And clinic January 8th and then we will find out whether we can spread this out so the veins can heal more between treatment.
Other than this it was a straightforward treatment day.
On 21st December we had a neurology appointment before Avastin, we then went up to daycare – but the numbing cream was put on a bit late.
Oscar has been down with a stinky head cold all week, so I mentioned this to the nurses. We were swiftly moved to a side room – so as not to spread germs to the cancer ward. His stats were all normal so we were allowed to go ahead with treatment.
The oncology doctor tried a couple of times with the cannula on the inner elbows but had no luck and she called for backup before anxiety settled in.
Then some kind of miracle happened!.
We didn’t put numbing cream on hands this week because Dr E said to rest them, but the backup doctor suggested we try the hands – with the numbing spray. Now both myself and Shaz stayed talking to him telling him to remain calm! Telling him that it might hurt but if it did it would only be for a very short time. The Dr got the infra-red machine out and in darkness guided the cannula in spot on, yes it hurt for a few seconds then he realised after that it didn’t hurt at all.
I am so proud that he remained calm and did not get anxious and cannulation went fine – this is a first for us – hoping we have taken a massive step over the anxiety barrier plus the doctor was lovely and I made sure he knew how thankful I was keeping Oscar calm.
So, remember I talked about Imposter Syndrome above? Turns out that they had now “forgotten” to take our treatment off hold, so we had to wait nearly 2 hours for them to get it through the system (treatments are placed on hold if they are unduly expensive – which Avastin is). I was not impressed! – so after the jubilation with good stats, good bloods and cannulation being done with very early – it was back to waiting. I don’t know if this is a something that happens for others that they have been forgotten about?
Treatment eventually started and we got home late and in the dark.
Looking forward to the lighter nights again!
Up next – January!, Scans and clinic – where we go from here?
I wanted to also write about the Sandcastle Trust Home – Sandcastle Trust
The Sandcastle Trust walks alongside families living with a rare genetic condition to help them build lasting positive family memories, strengthen their family relationships, and improve emotional wellbeing and resilience
Check them out today! I found them when scrolling the internet for something else, but sounds like another useful place where kids and families can make memories and its especially for those with a rare disease diagnosis.
I@ found this, thought it might help someone or a family – feel free to investigate!
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
— Joanne Ward
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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 Grace Gregory, at grace@nf2biosolutions.org or Joanne Ward (NF2 BioSolutions UK and Europe’s COO) at joanne@nf2bisolutions.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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