05 Waiting For The Next Move
So back to waiting for the next appointment. I am being referred to Bristol for Gamma Knife Treatment, I'm feeling good about this from all I have read about the treatment, tried, tested, high success rate etc. so what's not to like?
I'm having a bad few days, my blood sugar has gone weird, off the scale and making me feel very tired and sick. It started in the hospital after the op and has continued erratically since. It was highlighted again by our local nurse when I picked up the thrush issue which is related to blood sugar issues coupled with steroid intake. It is Saturday now and I finished the steroids last Thursday so I was hoping for some progress. I woke around 3 this morning with a banging headache and couldn't get back to sleep, it just dragged me down for the morning. We have to test my blood sugar twice a day, it is around 20 all the time which is borderline (so I was told), one reading hit 25 but has come down since. My body is acting very strangely now, hopefully not for much longer please. I've not had a lot of bad days so can't complain.
I had almost talked myself into going to Lymington Market on Saturday but a combination of feeling crap and bad weather changed my mind. Probably for the best I guess. It was never a good idea.
After Tuesday's meeting with the consultant and the news of the tumour count my emotions are back on edge again. Why wouldn't they be?
The headaches are hitting daily, I do not handle these well, never have. On a scale of one to ten these are only a four or five but they just plain make me feel ill, getting a few a night, they wake me up and I cannot get back to sleep.
Had a great weekend, my Brother Mick came over to see us on Friday, he's around for the weekend so I will see more of him. Our eldest daughter Siobhan drove down to see us on Sunday, so great to see her, first time since February. So good catching up and made up for me feeling rubbish and the never ending shielding.
Into the week and the blood sugar seems to be having bad effects on me. No energy whatsoever, even walking up and down the stairs is a challenge. Just generally feel sick with loads of headaches which really are my Achilles Heel, always have been and will drag me down regardless. My GP has been in touch and is appalled that I think just under 20 is a good blood sugar reading, I now need to get this below 5! So totally removing any sugar from my diet is the only way forward. The steroids should be almost out of my system now so they should not be interfering with by blood sugar (I'm not convinced). After a few really bad headache days we get the readings down below 8 with the best 5.1 and averaging around 7.5 so panic over for a while. Unfortunately this will not be the last of steroids as most brain tumour treatments seem to call for them. We'll manage that when we get there and I have agreed to discuss and monitor with my GP going forward.
One good thing though since coming off the steroids. I can sleep the night, in fact better than I have ever slept, even if I wake up I go straight back to sleep. Perfect! Seven to eight hours a night, a whole new world for me.
The next week is all about managing blood sugar and waiting for my next appointment, I seem to spend a lot of time waiting but in reality I'm just being impatient. I am coming up to eight weeks since the tumours were discovered and so much has happened since so I have no idea why I should be impatient. Calm down eh!
I'm called for a meeting with the Oncology Team on Thursday 9th July, Video link again so no travelling, I was almost looking forward to going out!
We met with the senior Consultant and Doctor that I'll be working with going forward. They are aware that I have been referred for Gamma Knife treatment but want me to start Immunotherapy as soon as possible. They believe that this is a good way forward and I get the feeling that they have a preference for this treatment over the Gamma Knife. A good meeting that lasted around an hour and a quarter, lots of information and probably the best meeting so far. The nurse contacted me on Friday and has booked me in for a blood Test on Monday 13th and pencilled in Tuesday (TBC) for the start of the Immunotherapy treatment. That was quick!
We had a few friends come over to see us on Friday (Social distancing in the garden) and on Saturday all the family, partners and my brother came over for a BBQ and birthday celebration for Aislinn, our middle daughter. The weather was great and a fantastic day was had by all.
Focus on the positives
There are too many negatives in life
Negatives drag you under
Positives raise you up
Current default position: Laying on settee listening to CDs just for a change......
Current Favourite CD: Pink Floyd - Dark Side of the Moon
I first bought this album in 1973 when I was still at school, I had only three albums then, this one, Mike Oldfield Tubular Bells and Status Quo Piledriver, played them all to death and knew every note, lyric and guitar break on them all (OK not much lyrically on Tubular Bells).
I still love this album, even today it sounds so fresh, it has aged very well.