First real blog of 2010 and its a moaner - you have been warned.
Things have just been pants lately, our car broke down before Christmas and cost us £320 to have fixed the day before Xmas Eve. Then there's our fabulous large American style Fridge/Freezer that works when it wants to. At some point before Xmas Eve it had gone off......defrosting everything! So a massive cookup on that day and make do for Boxing Day when I had family visiting (they bought some with them too thank goodness). Oh my new C903 mobile phone no longer gets a signal when I am sat in the lounge, I have to go to my bedroom or the hall to make or receive calls....so that went in for repair - only got it in June - and has been back with Sony since Dec 15th and no sign of that reappearing yet!
I started to wake with headaches just before Crimbo and Mr. B my brain surgeons words echoed round my head - "waking with a headache is classic brain tumour symptons" - just over a year to the day when this rollercoaster ride started. After much barracking from the family and my FB friends, I rang my specialist neuro-oncology nurse who reassured me. My headaches have gone, but they were there for two weeks solid, all over the holiday period. Anyone with/had brain tumour knows how you start to torture yourself with every headache! Still I was being scanned early January and seeing my onc on the 22nd for results.
In full panto season it goes "OH NO YOU'RE NOT".....oh yes I am I say, the registrar told me late November I was.......still the panto voice shouts back "OH NO YOU'RE NOT!" and panto voice is right. My appointment for my MRI with gandolinium (contrast) came through for 4th February........two weeks after I am seeing my oncoligst for the results of said MRI. So are the NHS now relying on telepathy as a requirement of consultants??
I rang my nurse back who said she would look into it, but not to hold my breathe as the MRI department is heaving under its workload at the moment. But should the worst happen and they have to move the oncs appointment, it would only be one or two days after the scan.......not bad I thought.
Its a week later and I ring Kim to see if she has had any joy moving the MRI, Kim's out of the office for a few days this week so I get passed onto my oncs secretary who is very brusk (is that how you spell it lol)....pretty much told me the MRI department is busy and my GP has received a letter to say I am finished treatment and will be scanned around January!
OK I know I have finished treatment, but my condition will never be gone.....Buttercup will come back at some point and right back at the beginning of this journey I was told I would be scanned every 3 months until I die basically.......well its been 6 months since I had one and only you guys know what its like living scan to scan.....I am probably not their most urgent patient..........nor do I expect special treatment, I guess I just feel a bit down and bit poopy about everything right now. Gimme a few days and I will bounce back.
So my next MRI is 4th February at 5pm and I see my onc (not a few days after like I was told) on Feb 12th for my results. I just wish they wouldn't tell you things and then go and do something different or move the goalposts.
Whinge over - normal service shall resume again soon - besides today is the first day in a week that all of my kids have been back to school - its lovely and peaceful at home. The photos are just some of the snow lately
Thought for today:
Life has no smooth road for any of us; and in the bracing atmosphere of a high aim the very roughness stimulates the climber to steadier steps, till the legend, over steep ways to the stars, fulfills itself.
W.C.Doane
