Brain Inflammation

I am in two minds about these health posts, and not everyone wants to read them, depressing subject that it is. On the one hand, I don’t really want to talk about it, but I have found similar posts by others helpful and informative. Doctors talk about symptoms and treatments, but they rarely experience them first-hand. Bloggers have. They share parts of their lives with you, and you are concerned for them. And, like with medical reality programmes on television, I suppose some of us wonder how we would cope in these situations. The supportive comments are therapy in themselves. Thank you everyone. 

It is three years this month since my health disaster kicked off with an unexpected seizure. Until then, I was walking regularly around our lovely local countryside and further afield, riding my bicycle through our quiet local lanes, swimming each week, driving to my favourite shop (Screwfix) for DIY parts, doing jobs around the house, gardening, playing concerts and ceilidhs in a band, and trekking up mountains on holiday in locations such as Scotland and North Wales. We made plans now that the kids are fairly independent. We were going to book holidays and visit friends and relatives around the country. Most of it had to come to an end. 

I now wonder how long I will be able to continue this blog. Some days it poses no difficulties; others seem impossible. The same with commenting and responding. It can sometimes take me ten minutes to make a single comment; there are often things I want to say, but it is too difficult, so I read but do not comment, for which I apologise, but that is how things are.  

The problems are caused by pressure from brain swelling due to inflammation. It causes mental exhaustion, and I have difficulty recognising letters and words, and using numbers. Thoughts don’t flow freely as they should. 

So far, the inflammation has been reduced fairly successfully by Dexamethasone steroids, and I have been a lot better within two or three days. In February when I last wrote about this, when the (then) latest MRI scan indicated changes, I was given a 20-day course of 4 pills a day (8 mg) for 5 days, reducing to 3 for 5 days, then 2, then 1. Two years ago, when things looked really bleak and I was sleeping most of the time and unable to concentrate on anything, I was told to start immediately with 8 pills a day (16 mg). That is a very high dose. That was when the nurse practitioner, who says things she perhaps should not really say, said the MRI scan looked “awful”. I appreciate someone with the confidence to say what they think, rather than giving options without advice. On a previous occasion when it was realise what I had, she said “I would not go down the lung surgery route if I were you”. I would not have sued the NHS if that had been wrong. 

Because Dexamethasone has a tendency to irritate the stomach, it is normally recommended to take Omeprazole beforehand for protection. I don’t get on as well with Lansoprazole which is an alternative. They both reduce the amount of stomach acid secreted. 

As I wrote in February, the scan indicated a blood clot, a new tumour, and increased activity in existing areas. Disheartening, to say the least, but it turned out not quite that bad. When more recently they were able to get a cannula past the oedema and obtain an MRI scan with contrast dye, which gives a clearer image, they concluded that the new “tumour” was in fact associated with the blood clot, and was being re-absorbed. However, less encouragingly, the existing areas were continuing to show signs of activity. This has been going on slowly since the start, although now held in check by the targetted chemotherapy. 

Some days ago I began to struggle with letter recognition again. When I started to write a comment on another blog, I was unable to locate a particular letter on the keyboard. I then forgot which letter I wanted, and then what I was trying to say, and what it was about. The comment was never made. But I usually know what is happening and remember. The comment was that not many yet realise that international trade tariffs will give a massive boost to the BRICS economies, and their eventual divergence from the Dollar. 

With a few Dexys left, I decided to take one a day for 5 days before it got any worse. It seems to have helped. I did not mention it to the doctors because all they would have done is ask me in for more pointless tests, and possibly kept me in all night, and most of the next day until a doctor was available to sign me free to go. It is like a prison in there. 

How many more times will it happen, and how often? Will I eat the tomatoes and runner beans I have sown, see our pears and apples this year, make it to my next birthday, and then Christmas? How long does it go on? 

I looked back through Weaver’s blog. By this time last year, she was posting infrequently after posting brilliantly every day for many years. In July, she announced her final post. In November, we learnt she had passed away. I may be on a similar trajectory, but her condition was different from mine. Some years earlier, her husband’s brain tumour gave him only weeks, rather than months or years, but his condition was also different. 

I can only stay positive and hope. A few patients on the internet say they have been on my particular targetted poison for over five years. There are not enough of us to really know.