He’s back!…

I sound like Cornelius Fudge from Harry Potter when he realises Voldemort has in fact returned. (Those who know me well know I love HP!). My initial scan after my second craniotomy in December was really promising and so I got out of hospital and was home for Christmas which was just wonderful. Very quiet New Year so fast forward to 10-Feb-2025 and first post op MRI Scan and results on 13-Feb-2025. The wee bugger is still there/or its grown back. Bloody brilliant and Happy New Year 2025 Ali!! But a silver lining, PET Scan and result 17-Feb-2025 still shows No evidence of disease! So my liver and lungs are good – I just need my brain to play along and stay stable for a wee while. Thankfully Dr Herbert was able to treat it with radiotherapy – 5 sessions over 5 days starting Thursday 20-Feb-2025 in Oxford.

Unfortunately one of the side effects of radiotherapy which I had forgotten about is hair loss at the treated area. I noticed my hair on Friday and I am now showing off a rather fetching bald spot!!

So I have now had two craniotomies and radiotherapy or gamma knife to the same area at least 3 times. So now the risk increases for radio necrosis – a risk I am prepared to take if it keeps me alive. So the bottom line is my options for treating my brain tumour are becoming limited, but Dr Herbert said if and when we need to look at options he said if he can he will. Since this part of my journey started in May 2024 – 10 months – it has been a roller coaster and to be honest the reality has really set in and it has scared me more than you can know. I am not ready to die, I am not going to die and I will continue to fight with every breath I have.

I heard this song on one of my support facebook pages and it really touched me so thought I would share it.

I am still hugely positive and have no intention on giving up but at times you hit on a reality check and a reminder of what I am living with every day and the fragility of life.

My next scan is going to be in May but I am not going to spend the next 5-6 weeks worrying about ‘what if’ when I don’t know the outcome so we will deal with whatever it may be when I get my results. Live for the moment, live for today.

Myself and the whole family including Winston went to Centre Parcs at Longleat for the weekend. We all had a great time including a Cabana in the swimming pool which was a great base and somewhere private where we could sit and have some drinks, food etc brought to us. I went on the rapids and one of the slides and I didn’t ‘drown’ this time!!