Small victories help, in a massive way


Gather round everybody, let me tell you my tales of woe.....

Please do not worry, I am not looking for sympathy, the aim of this blog is to hopefully be uplifting to other BT warriors in some small way. I am by no means an expert, I am just trying to find my own way through.

The past 2 months have seen my family and myself have to deal with my first full seizure as a result of my Grade IV GBM. I am now 21 months post diagnosis. Having a seizure was one of the scariest prospects of the disease for me and has been one of the things that I have feared the most. However, it was strangely reassuring to have it, knowing that I knew nothing about it taking place and remembering nothing about it since it happened. I have always feared that the children would see me having a seizure and the effect that this might have on them. They were at school when it happened, but when we told them, all that they took from it, and what they thought was highly amusing, was the fact that I fell off the toilet during the seizure! It was amazing as to how sobering this one.

Since then, what has been difficult for me to deal with and to manage has been some lose of bladder control and the need to increase my steroid prescription, which in turn has presented some further unwanted and subsequent side effects. This has included an increase in confusion - I am now unable to put my clothes on the right way round, including my pants (much to the amusement of my wife) and I have no idea what day of the week it is. I can no longer navigate myself around once familiar places, and have been known to walk into cupboards in an attempt to locate the nearest convenience! I can also no longer walk unaided and after numerous visits to the toilet with my father, who has seen my naked arse now on too many occasions, I have succumbed to the need to use a walking stick. At least the kids have an extra toy to play with now, in fact they won't leave it alone! As a result of these side effects, I have had to admit the need for further support from outside agencies. The scariest of these for me, has been to enlist the support of Arthur Rank Hospice, as I had certain perceptions on a hospice and what service they provide. I could have quite happily hid on the day of my first visit to day therapy there. However, I am happy to report that the support I have received from them has helped me no end and I can't praise the staff enough for the work that they do.

My treatment currently continues, three weekly chemotherapy sessions at Addenbrookes hospital (this via IV this time). My next scan is at the beginning of December, which always presents anxieties but in the meantime, we continue to do what we can, when we can and embrace the hills and headwinds that are sent our way. Until the next time..........

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