Yearly Update 2019

Hi all,

Yet again 2019 was a busy year and haven’t managed to do a update until today.

Firstly I’ll start with the main thing, my Brian tumour remains stable. Even though inside the tumour has now got a new cyst the team say it is post treatment and everything has remained stable.

I have had right sided facial weakness with some mild dysarthria. This has effected my smile, feeling on my tongue and speech so the Oncology team referred me to have a video fluoroscopy. This is a swallowing exam that looks at your ability to swallow safely and effectively. The results from this exam came back ‘normal’. So at least I know I’m not going to choke to death. All these thing have now been noted and I am waiting to have a full speech and language assessment. Oncology wise the team say I have probably had a microscopic bleed in my brain and the above are effects of this.

I have been prescribed new medication. I now take methylphenidate to improve alertness and attention. So it was trail and error to find a balance that worked for me. First was 10mg in the morning and 10mg in the afternoon, but this effected my sleep. They then decided to change it to 20mg in the morning which still didn’t work so then my dose was upped to 30mg in the morning and still remains at this. Up until I ever started taking this medication it wouldn’t have ever cross my mind that I wasn’t alert but taking this medication made me realise the difference. Cognitive problems have also occurred and mental tasks, related to attention spam, thinking and short term memory are now be an issue for me. Even though I still struggle daily with all of the above my Neurologist has told me there is other medication I can take or higher doses I can be put on. I have chose to leave my medication as it is at the moment though as I already know the long term effects of what I take and unless things progress and get any worse I don’t want to be putting more medication in my body.

Endocrine…. This is has been the biggest effect of having a brain tumour. At the beginning of the 2019, after a blood test, I was told I had a low B12 and so I had to have a B12 IM injection in my butt. Low B12 can be a rare side effect of long term use of Metformin. I last had my B12 checked in November and all was good. In October I found out that my Iron Serum levels were low and therefore I have Iron-deficiency anemia and now have to take Iron tablets. Another diagnosis to add to the list is Gonadotropin deficiency. Gonadotropin is a hormone released from nerve cells in the brain. It controls the production of luteinising hormone and follicle stimulating hormone from the pituitary glad. Obviously if you are deficient of this it means the individual will not go through puberty, leading to long term health problems. Dr Didi decided that he was going to induce puberty and get a dexa scan done. A dexa scan is a low dose X-ray to see how dense (or strong) an individuals bones are. They are used to diagnose or assess your risk of osteoporosis, a health condition that weakens bones and makes them more likely to break. I was told the results of this scan came back fine, which is a good thing. The treatment to induce puberty is a Estradiol Patch that was placed on my skin and changed every 3 days. After having my patch on for 2 days I became very itchy and had hives where the patch had been. An alternative of tablets were provided. My dosage started off at 2mcgs, then was upped to 4mcgs, then 6mcgs to then be told that the 2mcgs tablets were no longer available in whole if the UK. I was then prescribed a 5mcgs tablet that I managed to take for 2months before that became unavailable (just like many other medications in the Uk) So at the moment I am a 17 year old with no puberty. However there s no guarantee that even if the tablets were available that I would ever start a monthly cycle of periods. I now have a pump cream as another alternative but until I have another blood test I do not know if this is working.

In September I also started Sixth form on an exceptional entry. I enjoy going to college and at the moment my route is to become a lab technician. I wanted to look at jobs that would be able to be done part time and this job is one that can be done part time and is also a job I was interested in.

please feel free to leave comments or contact me for those of you who can through email, social media etc