I have been writing a blog about my experience of cancer. 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 January 2021. I have outlined 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 to await the next stage.
As ever I have written this in the spirit of citizen journalism and I thank the Orkney News for the encouragement and support to bring this to you.
The blog helps me to outline and describe the treatment process and I hope it is of some use to people who have similar cancer or who just want to know more about something that up to now seems very mysterious.
It’s also very helpful for me to get perspective on the journey itself. I look back to where I have come from and where I’m going this week. It all been about preparation for my radiotherapy and ongoing follow-up treatment and I spent a morning in the hospital talking about the process and getting to understand the stages that I would go through.
Part of this involves actually moulding a mask which helps to focus the radiotherapy onto the right part of my brain where they want to do the business. Secondly, I got some input about and what would come next if I needed chemotherapy as well. Highly likely in my case.
The mask itself was a piece of plastic that gets put onto your face and feels quite warm and then it is air-cooled down so it forms a rigid face mask with a hole for breathing and allows the radiotherapy to be focused onto the scalp in my case. It will be used to administer very focused short bursts of therapy over the next 3 weeks. I also got a CT scan and an MRI scan to help with the alignment for the treatment. The ‘ba’ shaped head is a product of the steroids but more of that later.
Reconnecting and building positivity
Throughout this process, I’ve noted how pleasant people are and how professional, confident, relaxed, and very, very kind they are. At no stage did I hear the words, delay, waiting, or cancellation. So well done NHS Scotland. Yet the technical and process part of it much as it’s very efficient all could disconnect with the human part. You have to work on that.
I had an extraordinary conversation with another patient today. She was behind a Covid mask the same as me but I recognized her name being called out as someone who was a community activist in a part of Ayrshire I worked in for many years. She was an inspiration because she had several issues to deal with in different locations of her body but like me had just discovered an issue in the brain. I felt like I had just reconnected with a big network from my past. It was like being given a jump start from a battery charger. The world was opening up again to reconnect with me.
I drew strength from it and I realized immediately that I was not doing enough of the positive stuff despite waxing lyrical about it. Part of this connection happens naturally. I had reconnected with someone at a different stage of their journey and not only drew strength from it only but realized I had the untapped potential to go much further and also do the same for others. In fact, everyone in the hospital was connected on the same mission to extend or save a life our own.
The positivity rubbed off on me in and I realize that as I was embarking on my treatment I needed to massively increase my positive attitude as up to now I have allowed myself to wallow a bit because of the perceived hardship of the treatment I was getting. You can get lost in the process and disconnect from what brings you strength and courage. I resolved that it was time to get with the program Daddy-o!
Another milestone passed
I should say the preparation for the treatment today was a bit of a milestone and encouraged me to be more positive going forward but it has not been easy.
Part of my issue with treatment has been the psychological issues and the general feeling of anxiety I have accumulated over the last 3 to 4 weeks since being diagnosed. As I’ve said before it’s a bit like you’re on a journey but you don’t have all the answers and you don’t have the destination. These include a range of issues such as employment, finance, looking after people you love, and communicating about the changes you are experiencing. You know roughly the direction of travel but you’re not being positive about it because of the unknown variables. it can be overwhelming. Now I am beginning to see the road ahead a bit better.
Part of the problem is having to use a steroid drug every day to slow down the effect of cancer while they undertake the therapy. It is essential but quite unpleasant.
I have now also shared information with my family about the day-to-day impact of the damage on my left side of my brain which impacts the right side of my body. It’s important to point this out and acknowledge the changes otherwise my behaviour could just be seen as annoying.
This left-right effect is to do with the different hemispheres of the brain. I still do not know to what extent I will have such issues including numbness.No one can tell me that categorically. The part I was most worried about is relating to my understanding of language and speech. As I go through the day I start out strong but by five or 6 o’clock I certainly do feel much weaker
The resilience of people is a constant source of amazement to me but personally I must come across as a bit of a ‘scaredy-cat’ when it comes to MRI scans. I believe it came about when I had an MRI scan once and the people administering it didn’t really explain properly what was happening. I had what you could call a panic attack and since then I am very cautious about scans. I explained my situation and people were very kind and organized for a mild sedative which I now have and can use all my treatments. This is a great relief as it means I will have a ‘little helper’ in pill form should I require it.
The effects of steroids
Dexamethasone is an effective and widely used agent that is administered perioperatively to improve the quality of recovery after surgery
Impacts on Daily Life
XTC Senses working overtime
The Beatles Fixing A Hole
“The Road goes ever on and on
Down from the door where it began.
Now far ahead the Road has gone,
And I must follow if I can,
Pursuing it with eager feet,
Until it joins some larger way
Where many paths and errands meet.
And whither then? I cannot say”
― J.R.R. Tolkien, The Fellowship of the Ring
- 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)