Hi, I'm James. 54 years old, Retired based on medical reasons. Four children with my wife as my full time carer.
Diagnosed with benign brain tumour nineteen years ago.
Experienced 3 de-bulking Operations4 months of radiotherapyand 9 months of Chemotherapy.
I've signed up hopefullyto offer support from the experiences I've gained. I certainly would not classify myself as an absolute expert.
I am an avid sports fan and try to keep fit,
Thanks,
James.
Hello Hammer:
Wow, 19 years, 3 debulking surgeries, Radiation and Chemo? My Lord! I can't imagine. May I ask what your quality of life is like? I have decided I am done despite reoccurring tumor, because I fear further loss of quality.
Hey Mimi,
Thank you for posting your personal message sharing such personal thoughts. It's great that you have the confidence to open up about this delicate situation. Believe me there is a lot of love and best wishes being sent across the pond to you this Christmas so please don't forget all of us over here thinking of you. When I first read your post I felt very sad, and even more so when I reflected upon your words.
Sorry I've taken so long to respond to you. My quality of life has been fairly normal over these last 20 years. As normal as it could be with an MRI scan every 6 months and taking the necessary tablets morning, noon, and night. I've done my best to stick to doctor's orders being Eat correctly, Exercise routinely, and get out regularly for some fresh air. I'd also add spending quality time with friends and family doing all those activities you used to love doing. I must admit I'm not perfect, my diet hasn't always been as advised and I know I can do better with the exercise. I feel at my best once I've been out walking in the fresh air with my headphones on listening to my music.
As for side effects the steroids contribute to weight gain, not massively if controlled by exercise and diet, but it's still there. Also a lack of testosterone flowing around my body which would not impact you as a female but is a cause for rather embarrassing 'shrinkage' issues where testosterone would normally do it's work! I apply testogel as a gel to help improve things but no real joy. Seems a good time to pose a question that if any of our lads have experienced the same thing can you share what worked for you. Sorry Mimi, that bit is going to be of no help at all to you, but a good opportunity to share and seek advice! I think most people will tell you the toughest side effect is fatigue. I monitor my activities and can generally tell when I'm going to need a bed day. Social occasions when I end up trying to focus and converse with 30+ people is a real killer. Again, I may end up in bed for the entire next day. This is fact so let the people around you know in advance how you're going to be feeling. It's no bad thing taking the odd day and listening to your body.
I believe that everyone on this planet is deserving of a wonderful happy, fulfilled life and although many of us experience the dark murky depths of depression we must fight it. Talk to the professionals as well as your family and friends. That certainly won't do you any harm but may well help you see the brighter side of things. Hopefully even bring back all of those warm and wonderful memories you may have.
And keep posting. Let us know how things are going. You may be finding things really tough but please do share if you can. This is really important to us all. Don't forget about us.
Try and have a lovely Christmas. Thank you, Mimi,
James
