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. My story had gone from someone who had a spinal condition that was debilitating to someone who received a very unexpected diagnosis of brain cancer in mid-January this year. 

Despite recent press in the political pages about difficulties in getting access to cancer care, I can only say that I have been accelerated through the system after being diagnosed with parietal lobe brain cancer. The cancer was described to me as primary cancer i.e from one source. It is not lifestyle-related or genetically transmitted. I was operated on immediately to remove a mass tumor and after recovery in the hospital, I returned home and I am now one week into radiotherapy. I also started ‘concomitant’ chemotherapy on Wednesday i.e. taking drug treatment to run alongside it

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.

Last week I got a special mask moulded to wear in order to get my daily dose of radiotherapy delivered to the correct portion of my head. The machine looks like the medical equivalent if a large Hadron (spelling check fully engaged!) collider. It involves lying flat on your back on a platform like the one illustrated for a session of about 10 minutes at a time. This involves a journey to the hospital which takes about 20 minutes for me. Many people have to travel miles for this. I am using patient transport because I have poor mobility.

You get allocated a time slot but can get slotted back in again at any time to accommodate other things like meetings with consultants, blood tests etc,.

I get three blocks of 5 days of radiotherapy and now chemotherapy as well which may go on for a bit longer than that. I have always heard some negative stories about the side effects of chemo but I am told there have been great improvements made. I am also getting Homecare services to help me in the mornings.

The chemotherapy is administered at home. I have to take a special anti-sickness pill first then wait half an hour and then take the full anti-cancer medicine followed by another wait before taking anything to eat. Then and only then can I take my other normal medicines including dexamethasone which I have written about before. This is a steroid which causes you to feel more hungry than usual and it’s quite unpleasant to take. 

The specific drug I am taking for chemo is called temozolomide which is for post operative treatment. I am taking 150 mg a day in one dose in the morning. The National Institute for Health Care Excellence has a website where you can get the cost of all medication but I am not sure if the costs only apply to NHS Scotland alone or is UK wide. Costs of drugs can vary through local procurement arrangements. As an example however the cost of just one days dose of my anti-cancer treatment works out at £318.65. This to me is worth getting up in the morning for as there is a chance it could extend my life by a few years.

I do not have enough fingers and thumbs to add to all of the costs of staff at the hospital from the consultants, pharmacists, specialist nurses, radiotherapists, blood clinic staff, admin staff, ambulance crew, and volunteers.

So far so good. We await the results of the first phase of radiotherapy and chemotherapy and the good news is they may cut down on my steroid use in the middle of next week all being well. I am told that I will have more than one cycle of chemotherapy to follow up the radiotherapy and hopefully this will improve my chances in the longer term.

People Watching

Observing human behaviour has been a hobby of mine for a very long time I know that I find myself in a group situation where I am part of a process of healing I find it very interesting to see how other people take part in the same thing.

If someone had said to me how would you organise a system whereby people would come in individually to a hospital and receive a very personalised dose of radiation for a specific part of their brain I would have thought it could have made a subject of science fiction story. 

A 60s or 70s science fiction writer such as Ray Bradbury could have described a process whereby people come into hospital and almost like on a conveyor belt where they come along at the right time and the right place to receive their dose and go home again. The whole operation would run like clockwork and be quite robotic. 

Reading that same science fiction book might still seem fantastic if you didn’t actually witness it yourself. The reality is that the real system of organisation not only runs like clockwork but has a social element of connectedness which is really lovely to watch.

Everyone is wearing a mask of course and there is eye contact going on all the time. As the same people are in for blocks of three weeks or more then there is understanding social interaction between people and you see people waving maybe without even knowing each other’s names. In the socially distanced waiting areas people strike up conversations about where they come from how their treatments going and how are they getting home et cetera. It’s amazing how eye contact and non-facial expressions have come into play here. You cannot stop human beings from being human beings.

The journey continues and I hope to continue telling you about it.

Also by Dream Angus

Taking it to the next level. A personal cancer story continued.

My Cancer Story (to be continued) 3

My Cancer Story (to be continued) 2

My Cancer Story (to be continued)