Please note - I am not a clinician and this blog is my personal experience, and understanding of the my treatment. For medical guidance on the treatment and what to expect, please speak to your oncology team. The Brain Tumour Charity are also a valuable source of support and advice.
My brain tumour was a medulloblastoma, which usually presents in the cerebellum, CSF and spine. This is a common childhood brain tumour but also can rarely, present in young adults
Cranio-spinal radiotherapy, is radiotherapy delivered to the whole brain and spine. It is important that each radiation beam is precisely lined up so as to avoid damage to surrounding tissues. The brain is bathed in Cerebrospinal fluid and cells from this tumour can appear there, so it's for this reason, that radiotherapy was prescribed for the whole brain and spine, rather than just the area the tumour was.
In order to have this treatment delivered, I was required to lie on a special bag that is sort of like a fancy bean bag; it was deflated and the beans mould to fit my body. This ensures that the body is in exactly the same position each time the treatment is delivered.
Along with this, I rested my face on a chin and forehead rest and a mesh, plastic mask was placed over the back of my head and shoulders - again, this was to ensure that I was in the same position each time and also so that marks can be made on the mask, for the beams to be lined up with.
This is a quick snapshot of my mask from a distance - unfortunately, the only one I have!
I also had two small tattoos placed on their spine, again, to ensure that the isocentres line up in the same place each time.
These photos were taken during my visit to the Mould Room - here, the radiographers have ensured that my hips and spine are aligned, have already placed my tattoos and are moulding my mask to my head and shoulders. This is a plastic material; it is heated up in a water bath, which causes it to soften. Once it is a comfortable temperature to put on the skin, it is then placed over the head and shoulders, and clipped to the plinth below. I think it takes about 10-15 minutes to set and harden again, and then voila! The mask is made!
Below, you can see me during my radiotherapy planning session - as far as I understand, this is done to ensure that the computer plans for my radiotherapy, made using a CT scan of my brain and spine, are correct. Here, you can see me lying on my specially made bag and the radiographer is about to put the mask over my head. This mask is clipped down to the plinth and is quite tight.
I don't have any photos of the actual radiotherapy itself because I couldn't have someone in the room with me but it took 20-40 minutes - the actual radiotherapy treatment itself, takes seconds but the radiographers must spend time carefully aligning the isocentres to the body, to ensure the radiotherapy is targeted to the right area.
As I'm sure you can see from these photos, it's not the most comfortable experience! I am very claustrophobic and despite being given diazepam and lorazepam, this became unbearable for me and I did not complete the whole course of treatment. Not everyone will have the same experience as me but if you find you are having similar issues, talk to your neuro-oncologist and support nurse - sedatives such as the ones I mentioned, are available. After my treatment, I was prescribed Midazolam for my MRI scans. Unfortunately, this was not suggested during my radiotherapy and it certainly would have meant I could have continued. However it is a very strong sedative and wouldn't normally be the go-to option. If you find that what you've been prescribed hasn't helped, it is worth discussing this with your team, as there are several options.
At the time, I physically and emotionally didn't have the capacity to push for more help and alternatives, and that's something that I do regret.
Despite my experience, I would stress that the majority of people could find this uncomfortable but may not experience the distress that I did. As you know, I share my personal experience but it's important for me to make sure that doesn't make someone else's experience more challenging so I try not to focus too much on my claustrophobia, except to mention it briefly.
I hope this gives those that know me an understanding of why things panned out the way they did for me, and to my followers going through similar, some info on what you might expect at a planning session or radiotherapy. If you are receiving this treatment, you should get a leaflet from your team explaining the treatment and planning in detail.
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