It has been a few months since I last wrote about my tumour so I thought I would give you all an update on how things have been and since my second MRI is this week, it seemed a good time to do so.
Physically, my tumour is behaving itself. I don’t think I have lost anymore hearing, if I have it is marginal. Overall, my balance is fine; I notice I am getting dizzy more frequently when I exercise but it doesn’t particularly worry me. I just close my eyes for a few seconds, which amuses my coach when I do it still hanging from a pull up bar!
Psychologically I have also been well. I have been seeing a psychologist every 6 weeks or so (courtesy of work) which has given me the chance to get things off my chest that have been bothering me. Ironically, not the tumour. I can honestly say on a conscious level I have not thought about the tumour a great deal. Obviously, I know it is there and it is always in the back of my mind (literally) but I have not been consciously worrying or over thinking about it. I say consciously because I did notice a change over the few months following diagnosis. I found it difficult to concentrate, make decisions and I was experiencing head fog and tension headaches on and off for about 8 weeks. I was tired a lot, I didn’t feel like doing much and I experienced sensory overload frequently. I still find it difficult to be in overcrowded or loud places for a long period of time; I need space and quiet at regular intervals.
I let my GP and surgeons know about the headaches, just as a precaution, and they were attributed to stress. I was not overly worried about this either as under the circumstances I believe it is completely acceptable to experience this. For me it was a case of riding it out and looking after myself.
Since I last wrote I have found myself a coach for the gym, one who I feel my outlook and values align with. My aim is to become as healthy and strong as I can in the lead up to my second MRI so that if I do need surgery soon, I will be in a good place for recovery. When I met my coach I had two specific goals in mind; to be able to do pull ups unassisted and be able to deadlift 80kg (always going to be useful in a zombie apocalypse). These are just a couple of things I want to be able to do in life and I am aware that, after brain surgery, I may not be able to reach these goals and so I decided to have a good try at doing them beforehand.
My coach designed a strength building program specific to my goals and I loved it. But, my body and gut feelings were telling me I needed to cut back a bit. I was getting really tired and started to not look forward to training. Tumour, work, training; It was all a bit much stress on my body. I reached a personal best of 75kg on the trap bar and I was very content with this and given how my body was feeling, I gave myself permission to park my 80kg goal for the time being. At the end of the strength program I discussed with my coach how I was feeling. I cut down to 2 days a week and he designed a program that focussed on higher reps and lower weight, still keeping my personal goals in mind.
Along side the training program he gave me a personal macro/calorie plan and I was able to drop almost 4kgs in weight and I didn’t have to do a single second of conventional cardio. This also means that my diet is better, I have been making healthier food choices and added more veggies onto the plate. I also restocked on my favourite essential oils for stress, anxiety and sleep and really focussed on only doing things I enjoy and spending my time with people I treasure and really like spending time with. Overall, I am beginning to feel much better and more energised. I love training again, I still have my pull up goal and general “I want to be ripped” goal but I am pacing, and it is working for me.
I feel at this point it is important to acknowledge that I know I am very lucky in respect of symptoms. My tumour was categorised as small to medium at just over 1cm in size and I have very mild symptoms. I read a few weeks back a woman in the support group whose AN is smaller than mine and she has balance and vertigo problems and is completely deaf in that ear. I also know that I too could wake up one day with all these issues. Most people in the AN community know that it’s not just size but position of the tumour that causes our symptoms and, as they grow, they move position. I was walking home from work a few weeks ago with my earphones in listening to music. It occurred to me that I was only hearing it through my non AN ear. I thought, this is it, my hearing has gone. I was surprised, I hadn’t felt a change and it didn’t seem all that bad. Although I was a little panicked, I felt relief that it wasn’t as bad as I imagined. When I got home I told my husband and asked him to check the earphones in his ears….turns out the earphones had broken, not my ear! Obviously, I was happy about this and my husband found it very amusing.
Despite the headaches, brain fog and sensory overload, I feel I am doing very well. I have kept a positive outlook, one which the balance assessment Dr said will make me an ideal candidate for surgery as I will recover quicker. I have ensured to pace myself, not overload myself with activities and take time to myself when I want to. I don’t feel guilty if I miss an event or say no to an invitation because only I know how I feel and if that feeling is to be at home then that is what I will do. When I am at home, I don’t wallow, I do things I enjoy and surround myself in calming aromatherapy (and Netflix) and I will deal with the next stage of my AN story when it happens.
My second MRI is next Friday, 8th June and I can confirm I am not looking forward to it. Last time I went in all positive, thinking I would be calm and dignified. Half an hour later, after some f-words and bouncing my legs around I was out and slightly traumatised. I just need to remember the advice the nice Irish guy gave me as he stuffed headphones over my ears and slid me into a tiny hole “close your eyes and don’t open them until you come out”.
Shout out to my coach Brock Ashby for not making me do cardio, helping me see the benefit of fat loss and encouraging me to strive for my lifting goals. My Bronte life coach and emotional intelligence mentor Ixi Avila for satisfACTION and helping me remember what is important and Perfect Potion for filling my home with calming aroma xxx