What Does Cranio-Spinal Radiotherapy Look Like?

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.

A Brief Glance at My Story

After months of feeling generally unwell and relating that to another condition I have, and then experiencing some psychosis, I was sent for an MRI scan of my whole brain just to check everything was ok. This scan came days after booking our wedding venue and showed a 2.5cm tumour in my cerebellum. 6 months prior to this scan, I had an MRI of my pituitary which apparently missed the part of my brain with the tumour by a mere slice of the image! 

I was called onto the ward that ordered the scan and told about the tumour by a doctor that seemed very nervous and upset by the news. Within 15 minutes of this news, I was whisked up to Neurosurgery in a wheelchair (they insisted, even though I felt fine!) and was admitted onto the ward. I remember this as a bit of a whirlwind and suddenly found myself surrounded by what felt like 8 surgeons and juniors (I'm sure it must have been less than that). After further scans of my brain, spine and then whole body, I was allowed home on pass, to return in a few days for surgery to remove the tumour.

I remember that I was not in the slightest bit perturbed that this man was about to cut my head open and slice into my brain, but rather the final straw was the fact that I would have a urinary catheter inserted for during and after the surgery! The surgeon managed to get every visible part of the tumour out and I spent about 10 days in hospital after my surgery and returned home to await the pathology of the tumour.

On the same day that I bought my wedding dress, the tumour cytology came back and I was told that I had a (grade 4) medulloblastoma and would required further treatment. 

I went on to have begin craniospinal radiotherapy treatment but this was discontinued due to my sickness being so bad. I then attempted it again around 6 months later but again, I did not continue this. The treatment involves me lying face down with a mesh plastic mask over the back of my head, I couldn't move, or see, and setting up and receiving the treatment took 30-40mins - I'm very claustrophobic and it just got to the point where I could not cope with it any more. 

As a result of not having the required treatment, I've been told my tumour will definitely return and now have scans every 4 months. 

During all this, I don't recall feeling scared or upset but now that I am feeling better, I am experiencing a lot of the emotions - such as grief - that I didn't experience at the time. This can be quite challenging since it's a bit disjointed.

No one can give me a prognosis, as I presume there isn't any recorded data about the prognosis of patients who haven't had the prescribed treatment. Despite this, I am trying to crack on with things, at uni, working a little and volunteering.

Recently, I had picked up a little but a few weeks ago, I had a seizure and seem to have taken quite a few steps back. It's frustrating seeing my peers graduating and having families, but I'm trying to adapt and make the days count. This was my first ever seizure and came totally out of the blue. Annoyingly, it's put my driving license application even further away but that's not really the end of the world!

'Failing' the Battle?

When I first saw this on my feed, I initially felt the need to defend myself and thought it was a bit out of context to what I originally wrote but after thinking about it, it's not out of context at all. I couldn't cope with my treatment any more and that's the truth. I find the problem with the battle-cancer analogy is that it leaves those of us that didn't complete prescribed treatment, for whatever reason - taking on the perceived 'battle' - feeling like we failed, let our loved ones down, weren't strong enough and so on. In reality, we did our best, with what we had at the time. The treatment is sometimes devastating and for me, it is sad to bear the consequences of not having that treatment but I could do no more and that is the raw, and perhaps harsh truth of it. No one should cause you to feel guilty for doing what you could and being honest about that. @trekstock #trekstocknetwork#MelvinandMe #cancerrightnow #braintumourwarriors

New Year, New Me/New Symptom!

Trying to put my life back together after #MelvintheMedulloblastoma - studying and planning on being back at work in Feb after 16 months off, then BAM I'm back, stuck at home all week after having a seizure last weekend. Other people's bucket lists are to have some amazing adventure, ride a hot air balloon, see the world etc but all I want is to achieve my degree and work to make a difference for other people, and unfortunately, doing all that requires me to be well! I'm not feeling sorry for myself, just frustrated that I am trying to move on and yet again, something outwith my control is being thrust in the way! I merely existed and survived until now and think it's time to thrive 💪🏻 A new tumour wouldn't be big enough to be causing this new problem but I have to wait until (maybe) Monday to get the results of my scan so I'm trying to think about all the glitter I'm going to put on my 'I Made it to 25!' birthday cake. ✨✨ #lifeaftercancer #braintumourwarriors

The Pollyanna Positivity Fallacy

Recently, I've become increasingly distressed with 'peoples' insistence on positivity! (When I say people, I am generalising but I have recently come across this quite regularly)

People want to hear, that your cured, you kicked cancer's butt and you did so with grace and decorum.

They really don't like to hear that someone is living with active cancer or has been told it will most definitely return.

Telling someone "Oh no! Don't think like that; be positive!" is not helpful. It's not negativity; these are bare facts, and telling someone to be positive, completely invalidates their experience.

Living with an active cancer or knowing it will return, sets your life on a whole different trajectory! I'm not saying, that it has to hold us back but what I mean is, that's a whole other emotional world to work through.

Cancer throws up so many new questions and emotions for anyone. And as a young person, living with an active cancer/knowing it will return just jumbles those questions up even more. Do I date? Do I tell this person about my cancer? Do I allow this person to love me? Do I have kids? Will my illness return/get worse, just as I'm starting to put life back together? Can I even plan ahead? (I'm writing from a young person's perspective but I'm aware that these issues come up for older adults also)

When you tell us to be positive, you not only invalidate our experience, but you also ignore what this diagnosis means for our young lives, and the decisions or considerations we need to make.

It is a complete fallacy telling someone with such huge life changes going on, to be positive. This is is our reality.

I have felt quite stung recently, when those I do not know very well, have said such things. I understand why they say these things but it doesn't make it any more pleasant to be on the receiving end of! It's difficult for people to hear, and by saying 'be positive', they get to keep the rawness of reality at arms length.

So I guess , as a young person,  next time someone says something similar to "be positive!", don't allow this to discredit that muddle of emotions and big questions. This is your experience, not theirs and you are entitled to all of those feelings, even if that other person doesn't want to hold the space for the truth of what you are telling them. It also doesn't mean that you are not positive or you are pessimistic.  And even if you are, for one moment, not being positive, you are absolutely entitled to that!

And if you're one of those people that persistently touts positivity, please have a wee think about what you're really communicating to that other person when you suggest mindless positivity as a way forward.

15/05/16

I've been feeling really awful all week, which is why I haven't posted.

I'm mainly completely exhausted and lacking a proper appetite.

I'm appreciating having the weekend because it means I don't have treatment and I get a bit of downtime.

I'm currently trying my hardest to psych myself up for this coming week but giving up is certainly never too far from my mind....

Fraction One, Take Two

I'm back, having not blogged for a long time. I haven't blogged, mostly because I didn't know what to say any more and I haven't really accepted my diagnosis. That sounds ridiculous, not accepting something when I'm having all these procedures done to me but I don't feel real and I still don't quite believe my cancer diagnosis.

Anyway, I'm back tonight because after a lot of consideration and preparation, I'm restarting radiotherapy and I'm determined to get to the end of the seven weeks this time. So, take two...

Today's treatment went ok but I had to be in the mask for half an hour as they needed more images of my head. This is quite difficult for me because I'm claustrophobic. The heat outside made the radiotherapy department sweltering, and in turn, my head was boiling beneath the plastic mask! 

I don't feel much when I get the radiotherapy except a strange, metallic smell and taste when I get the beams to my head, and a slight heat when I get the beams to my spine (although I might have imagined that one).

I had a syringe driver put in this morning, which is a special machine that delivers anti-emetic medication subcutaneously, for 24 hours. I was also given 3 oral medications that should help with the sickness and nausea. 

We're now 2 hours since my first treatment, I've eaten and I've not been sick so I'm hoping that means that all of these medications are working!

1st March 2016

Hello all,

I've not been blogging of late as I've been having a bit of a meltdown! I'm a bit better now though and  feeling more positive.

Together with my neuro-oncologist, I decided to give radiotherapy another go. This is deeply unpleasant and claustrophobic but somehow, I must dig deep and find something within me to make me get on the table every day for 6 weeks. I'll be admitted to the hospital this time because I was so sick with it last time. Hopefully they can manage side effects better this time and I might be able to get home.

Anyway, this post was about showing the practicalities of radiotherapy. This YouTube video is similar to how I receive the treatment however, I am lying on my front, with the masked strapped over the back of my head because I'm having craniospinal radiation - which is radiation to the full brain and spine.

https://www.youtube.com/watch?v=eN2qOr1qjJQ

My radiotherapy planning begins next week so I'll have to power on through somehow, to get through the claustrophobia!