Thought when I started this that I would be upbeat and cheery- FAILED!!! So many apologies to all for not being consistent. Can't even remember what I said last time I was here- but quite a lot has happened since I last posted. SO HERE WE GO!!!
Had all my three weeks of I/V antibiotics - boring and to be honest don't think it did a thing - cos still getting chest infections (which I ignore until I feel I am on the top of Everest and oxygen is failing miserably) - allergic to so many antibiotics I just up my inhalers/go on nebuliser and hope it passes- which it usually does. Had another PET scan following I/V and pleura glowing bright red/hot but primary (although it had grown showing nothing??). SO they decided - following a rather terse e-mail to onc- they would do another CT biopsy aaagh! I thought after first one pebbledashing the room etc. BUT that biopsy came back "cancer free" - although onc said another inch either way may have had a different result. Previously had the T790M test and - negative- so no Tagrsisso. Also initial tumour tested for PDL1 - negative SO no immunotherapy. All round feeling a bit in "no mans land". Next CT this month and if that shows growth again then they will probably do open surgery to try and get to the primary and get a new sample biopsy. Derrh! Sorry - perhaps you can see why I'm been a bit in the doldrums (lovely word that).
Meanwhile lots of changes on the home front! My dear Grandson Max celebrated his 18th (Oh my God have I had him that long??) and passed his driving test second time - despite being instructed by me !! I know AMAZING - as far as he is concerned I learnt to drive with square wheels and possibly in a tank! He also passed his AS levels and had enough of college and started a Business Admin apprenticeship on Sept 5th at a Junior School - loves it and is doing the apprenticeship through a local college (doesn't have to attend), which he's ecstatic about- hated college. It will give him a BTech in Business Management at the end of 14 months and he's getting paid for it (always a bonus)!! Suddenly I have lost my taxi driver/lodging house for friends status- VERY weird!!! I suppose it's what is called "empty nest syndrome" - BUT is hasn't helped with the doldrums??!
Have started to lose quite a bit of weight - without trying- so a bit concerning BUT I love being a stone lighter. Seeing GP tomorrow for investigation re constant "runs" HAPPY DAYS!!! and anaemia - looking a bit grey- but that's what happens when we don't see the sun too often huh?? Kidney function went down to 30% but with Vit D3 now up to 45% so don't think I'm looking forward to an early end. Also to get another DS1500 - never thought I'd be doing that after 3-4 month prognosis LOL!!
As we should all remember the longer we hang on in there the more likely some new drugs will come along to help us. Keep positive.
Apologies again for dipping under the radar - all happening BUT nothing happening if you get what I am saying.
Chins up everyone - we must (and I'm giving myself a kick up the proverbial) continue to support each other!!! Together we stand divided we fall!!!
Love and Massive Hugs to all that read this Diz xxx
