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The Beat Goes On

Radiotherapy and chemotherapy for brain cancer during a global pandemic my journey continues.

Some of you will have seen my earlier blogs about my experience of cancer treatment. I am commenting on my experience of both radiotherapy and chemotherapy which are processes many people will go through in their lives. In my case, this relates to brain cancer in the parietal lobe on the left side of my brain which translates to functions on the right side of my body.

These blogs help me to outline and describe the treatment process and I hope this is of some use to people who might have similar cancer or who just want to know more about the process. I get that this is a bit self-indulgent so I have tried to keep the informative part to the first section of the article. The second part of the article is mainly observational and may go on a bit so I apologize in advance.

So how am I doing?

Now at the halfway point I better explain the process a bit more. Radiotherapy happens as I have described every weekday lasting about 15 minutes. Chemotherapy started two days after two days and is administered at home.

Blood tests every Monday and you get some feedback on a Tuesday. You get given a number when you arrive for the test. Mine was 57 so I went away and came back later, much later. This puts the ‘well-oiled machine’ under considerable pressure and as an ‘outpatient’ you can spend a lot of time there on busy days. So after waiting to be seen for an hour, tired and sore, I was not that receptive to the good news I was to receive. But it was very positive. 

I am making good progress , having had little or no bad reactions to the treatment. Now entering the third and last week of the radiotherapy and the transport that goes with it. Everyone involved seems to think I am doing well.

This might also translate into a reduction in the dose of dexamethasone (steroids) in which case I have ‘won a watch’ and will be very happy indeed.

The intention is to continue the chemotherapy and review. The temozolomide pills will have cost £956 by then but these drugs can add three years to your life in the right circumstances so who is counting? 

New drugs are coming out all the time even in the global pandemic. Despite my moans about waiting it still is a wonderful but creaky system. The important parts of it are the human beings that make it work that is why they all deserve as big a pay rise as can be afforded.

People watching

Two metres apart and wearing masks it is hard to get to know people. Or is it? Everyone is on a 3-week cycle it seems and you see the same people coming and going. I swear the old woman wearing the brightly colored plastic raincoat and see-through ‘rain mate’ headgear is very fit for her age. She comes in every day and we exchange greetings. She seems to have been reading the same magazine over and over for the whole time. When it is her turn for radiotherapy she is up smartly and off like a shot.The magazine is in lieu of a mobile phone which she may not own. Everyone else is younger and displays some kind of digital device now and then. In fact when someone takes out theirs a ripple effect occurs all the way along the line of waiting people with copycat behaviour. 

The radiotherapy people have it down to a 10-15 min turnaround. Name, date of birth then lie back and think of a part of your brain being zapped.

Over Easter, I was in and out quickly before being deposited in a seating area to wait for patient transport. Someone from the Beatson charity came up to me and offered me a Cadbury’s creme Easter egg. So if you donated it I thank you .

There is another woman about my age. Her treatment is early on in the day and she has to go back and forth perhaps to have blood tests. She is always the last person to be served at the cafe and always has something to eat. Speaking with her came easily and she enjoyed talking. It was clear that staying on was preferable to going home to an empty house. She must have gathered some amount of stories over her paninis and carrot and coriander soup. There was a good energy about her and it was not morbid curiosity at all. She was absorbing all that people wanted to share in her daily cafe conversations. In some bizarre way this made it socially accepted given the two metre distance to raise my voice among others like me and say ‘yes I have brain cancer’. Affirming it has to be part of doing something about it. So the next two weeks for me will give me more information to grapple with and help me to make choices about my future. Yes I definitely do have a future and I will shout that from the rooftops.

More progress updates to follow. 

The Beat Goes On. 

Let’s hope so! Thank you for reading.

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