In some ways I need to get used to relinquishing control a bit..... the brain tumour is going to do what it wants to a certain extent. HOWEVER, that fact does not mean I cannot help myself. I’ve been learning this the hard way a bit, but learning all the same..... my rollercoaster has tended to go from me being hugely optimistic, running at 100 miles an hour, and then promptly face planting.... then having to start ticking back up the frame all over again.
I remain hugely frustrated at the lack of guidance and the totally disjointed approach of my supposed ‘experts’ in Belfast. Thankfully the local medical team continue to come through in spades. My dedicated Hospice Nurse is great, my GP is stepping up and even Macmillan continue to take an interest in my case. This ‘above and beyond’ attitude is helping me now start to get myself very much back on track again after the setback of breakthrough seizures a few weeks ago.
Along with the never ending support from family, friends and work colleagues, I have now very much set myself up a ‘programme of work’. Although that’s kind of a contradiction in terms as it largely involves slowing down and doing less!
Moving forward now, these are my key goals;
- Reduce how much I try to do in a day. Learn my limitations. Take breaks. Don’t over commit. Be the tortoise.
- Go easy on myself. Relax. Daily meditation again. Stop apologising to everyone who helps me. Lose the guilt.
- I’ve got my anti seizure medication reduced a bit again. It’s definitely improving my sharpness, but I don’t sleep at night for more than 2 hours at a time, so I’m still often exhausted. This exhaustion impacts on everything - concentration, dizziness, mobility, seizure threshold, risk of picking up infections, mood and wellbeing, ability to function in general. And it becomes a vicious cycle as I end up putting more pressure on myself to sleep...... which does not help insomnia! I’m keeping an eye on the impact of all changes and making sure I keep being demanding about making more changes if I feel my body is trying to tell me something.
- Next up is the steroids...... I’ve been on them far too long and am convinced they’re doing me more of a disservice at this stage. Tying into my previous point..... it’s very difficult to get a good night’s sleep when you have to use the bathroom every 2 hours. We’re starting to very slowly drop the steroid dose again from next week.
- Getting my diet sorted out. I know I can partially blame the steroids, but it’s my hand that’s constantly grabbing the biscuits! There’s lots of conflicting information out there about cancer and diets etc. The reality is that the big trials haven’t been done, so the hard, scientific evidence just isn’t there yet. Far better to pay big pharma companies for more drugs than to see if cutting sugar or particular fruits/veg might help cancer patients.......?! Regardless, a healthy diet can’t hurt, so I’m aiming towards one third starchy carbs (whole grain bread, brown rice/pasta, potatoes), 5 portions fruit and veg, 2-3 portions protein rich (fish, chicken, eggs, nuts), limitations on high fat and high sugar, lots of water, and 6 smaller ‘meals’ per day.
- I won’t do it overnight, but I’ll get there. I’ve got all the time in the world and need to take personal responsibility for the bits I can.
All this personal decision making and help from my ongoing ‘Support Team’ has left me feeling very positive today. I know it’s going to take determination, but I’m good with that! I know there’ll be some more dips, but hopefully I’m moving from Alton Towers to Barry’s in Portrush, at the very least.....
Onwards, upwards. Slowly. Gently. Stay with me Team..... I still appreciate, love and need you. Keep within catching distance and I’ll work on not needing the safety net Xxx
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