What are the main types of treatment you have had so far on your brain cancer treatment journey?
Straight after my initial diagnosis by MRI I had neurosurgery followed by standard of care treatment which involved 6 weeks of daily radiation treatment to the area of the brain where my tumour is located. At the same time as the radiation, I also took low dose oral chemotherapy (Temozolomide).
Once the 6 weeks of radiation treatment was finished, I then did a few months of higher dose Temozolomide treatment. Due to the tumour coming back, I have also had a second neurosurgery.
Because the tumour has started growing again, more recently, I started on Avastin treatment.
What has been the hardest physically and mentally treatment type for you and why?
For me, radiation treatment has been the hardest. I think one of my specialists said it best when he said, seeing me after one of my radiation sessions, that “it has really taken a bite of you hasn’t it?”.
What made the radiation treatment so tough for you?
I am not sure how other patients experience it, but after each treatment, I felt like my head had been zapped (which it had obviously) but it made my head and brain feel very heavy and foggy and experiencing this daily for 6 weeks was tough physically and emotionally. There were some days that I really had to drag myself like someone was pulling me along to make my way to the appointments. Once I was there it was ok.
What made going through this treatment easier for you?
The biggest thing was location from my cancer treatment centre. I was very lucky that some friends let us use their apartment for the time of my radiation treatment. Their apartment was close to my cancer treatment centre. This made it so much easier to get to and from the daily radiation appointments, otherwise it would have been at least an hour’s drive each way. Most days after treatment, I just wanted to get back to the apartment straight away to recover on the couch, so being so close to the treatment centre was an absolute blessing.
It sounds like you had to dig deep to get through this treatment, what techniques did you use to get to the end of the treatment?
Because you know that the treatment happens over 6 weeks, in your mind, you can break it up into chunks of time, like I am a third or halfway through treatment. Admittedly about halfway through I was ready to throw in the towel but somehow, I got a second wind and managed to change my mindset that although I was hating this treatment that it was an important part of my treatment. So, I managed to keep on going.
It was also good to know from the radiation team that many people also find that the treatment seems to get harder in the last stretch so that made me feel less alone.
I know in North America; it is common for patients to ring a bell at the radiation clinic when they finish their six weeks of treatment – I don’t know what an Australian equivalent would be, but I think having something to look forward to once you finished treatment is a good idea.
What tips would you give other brain tumour patients who are about to start their radiation treatment?
The biggest thing if it is possible for your situation is to find somewhere to stay close by to the treatment centre because if you are not coping well with the treatment then it is great to have somewhere easy to get to. But each patient is different, and I know some people went straight from their radiation treatment to work. You will need to work out what is right for you.
What self-care tips would you give other brain tumour patients and carers?
In terms of looking after yourself during treatment, make sure you try and do a bit of exercise after treatment, even if it is just a 5–10-minute walk around the block. Also, listen to your body. If you need to rest or sleep during the day, then do that. Also drink lots of water during the days that you are having treatment. Also make sure you try to eat as healthily as you can. This can be a bit tricky because your appetite may decrease or you may lose interest in particular foods, this is probably due to the chemotherapy that you are taking at the same time as having the radiotherapy. Also, if you are finding that the radiation treatment is irritating your skin, make sure you ask your radiation treatment team about it as there is a special type of cream you can use to look after your skin.
I also had my radiation treatment during the summer period, and to avoid any sun radiation damage, make sure you wear a cap anytime you are out in the sun.
Did you feel or smell the radiation beam during treatment?
I really didn’t know what to expect once the machine started working. I could hear it move into position and hear the noise of the targeted beam, but I did not feel it hitting my head, there was no sensation, it was not painful. I know that some people can small something, but I didn’t get any smell from it.
Looking back, is there something about that time that brings a smile to your face about going through the radiation treatment?
Yes! Two things really stand out. The first is that as awful as I found the radiation treatment as an adult, there were kids also there having their radiation treatments. The cancer centre that I went to, took such great care of them. As I was waiting to be called in for my radiation treatment session, I would often hear in the distance one of the cancer centre staff playing an acoustic guitar and singing a happy song while one of the kids was brought in for the session. I thought that was very special.
The other special moment was that it was coming up to Christmas when I was getting my radiation treatment at the cancer centre I was at, in the appointment check in area they had a Christmas tree as well as craft supplies where you could help create a Christmas decoration to be added to the tree as kids and families arrived for their radiation appointment.
While it was bittersweet, it was so cool to be able to help decorate that tree with kids and their parents.
Was the radiation treatment that you received explained to you in a way that you understood what was going to happen?
Yes. I was very lucky to have a great radiation oncologist who spent lots of time before I even started my treatment to tell me and my partner and I about what to expect from the treatment as well as explaining how the radiation will only target the areas of my brain where the tumour is growing, or put another way, the rest of my brain will not receive the radiation therapy. Once the dates of my first radiation treatment were scheduled, there was also a separate education session for me as a patient and my partner.
I have heard that you need a special mask to be made, is that true? What is it for and how did it make you feel?
The mask is used by the radiation treatment team to help line you up on the table below the radiation machine to make sure that you are perfectly lined up to the machine where the radiation beam comes from.
How did it feel on your face during the mask preparation phase and then when you were getting treatment?
The process of making a mask can vary slightly between hospitals. Most often they use a special kind of plastic heated in warm water that it becomes soft and pliable. Your technician puts the plastic mesh on to your face so that it moulds to fit your face exactly. It feels a little like having a warm flannel put onto your face. It was a weird feeling at first but then the plastic started to set around my face.
On radiation treatment days, the radiation treatment staff would welcome me into the room, ask me to lie on the table, they would put the mask on, sometimes I would have to wriggle around a bit to get the mask in the right positions. Once I was in position, the radiation treatment team, who would often work in pairs, would then read out and double check measurements again to ensure that the radiation was going to be targeted to the right part of my brain. Once all that preparation was done, the technicians would then leave the room and the radiation machine would start moving itself into position.
I have heard some people keep their radiation mask after their treatment has finished, did you?
No, although it was kind of a cool thing to have had made up as it was moulded completely to my face, I couldn’t bear the thought of keeping those memorabilia.
What was your patient experience like when arriving for appointments?
Turning up for daily radiation appointments is not something to look forward to but there were a couple of things that made it much easier from a patient perspective. The first was that the appointment check in staff were always so friendly and because you see them daily, they get to know you after a while. The other thing that I really liked was that at the cancer centre I went to, they had a great system of letting you know if there were going to be delays in the days appointments. Like any machine, radiation machinery can sometimes have problems so if one machine was down that day, it would delay treatment until the machinery got sorted.
Did you lose your hair from the radiation treatment and what impact did that have on you?
Yes, I did lose hair from my radiation treatment, but the hair loss was only around the area where the radiation was targeted at. The biggest impact was not about how I felt about myself or about how I looked, but more about other people’s reactions to it.
There are a few moments about what other people said about my hair loss I can particularly remember that upset me.
The first was at work when I went into a meeting with a senior manager, and she said, referring to my hair loss, that she never knew what hair style I would have each day. Perhaps that was her way of making light of the situation but if only she knew how awful receiving radiation for brain cancer is.
The second moment was having a nice, relaxed breakfast while taking a well-deserved getaway, a guy at the breakfast table next to me came up and asked, again referring to my hair loss, if I had lost a bet with mates. I thought about telling him why I had very patchy hair loss, but I thought it wasn’t worth the emotional effort.
Have there been any funny moments?
Yes. The hair loss only really occurred where the radiation was targeted to my brain. This mean that the rest of my hair grew as it naturally would. So, I went to the barbers one day, and this was at the time that the show ‘Vikings’ was quite popular on Netflix. The barber said that I was his third customer that day that was trying to go for the Viking look. I laughed and said this style is not intentional.
So, I asked them could they just give me a haircut that tidied things up and evened out what hair I did have left which is exactly what they did, and I kept going back to the same barber.
The other make fun of myself moment was that I had to start wearing a cap not because I was worried about what people would say about my hair but because as I would eat some lunch or dinner, clumps of hair would sometimes just come out and so the phrase, “waiter there’s a hair on my plate” came true!
Image supplied by the author, MJ.