Friday, 3 February 2017

Busy couple of weeks... and Disney is a week away!

Well gang, It's been a busy mental couple of weeks since We told everyone the full scores on the doors, started the crowd funding and booked Disney, and in that time there have been some significant changes in my treatment plan and things and a lot of frustrating visits including appts and admissions.

So lets start at the beginning..

15th January - We enjoyed our family day our at Bletchley Park which was great but following om from the previous week when I had seen the Oncologist I notied my eyes had got worse, over the course of the next 2 days they went massively worse and a call to the Rennie Grove nurses who with my team at the hospital acted very quickly.

By Wednesday 18th I had been for my regular bloods for Chemo, My friend Gina and I had just settled down for lunch when I was told due to the swift deterioration they wanted me seen in A&E that day.. So we finished our food, and pottered back to L&D. We were fast tracked but 4 hours later (and one dishy doctor later) had a new MRI on my brain  to look forward to on Thursday morning and the new issues that my own oncologist has only ever seen in four other cases.. liesions on my retinas causing the vision to be awful and the need for my super lovely reading glasses.

Thursday 19th January MRI and a lot of waiting (4+ Hours)  around for the Chemo team to speak with the Oncologist Chemo was delayed and I was to be reviewed on the Friday...

Friday 20th January - Jo and I went for the morning appt with the oncologist again.. armed with a long list of questions we needed answers to but didn't really want to hear about too..
A new plan was hatched and I was sent to Mount Vernon for the first of 5 sessions of daily radiotheraphy that afternoon including the planning phase, another long afternoon but a plan and progress was back in place!!!

As part of radiotheraphy to the brain and eyes I had a beautiful and very claustrophobic gimp mask made for me! What a treat! It constricts you to the bed and holds you in place while you are blasted. Luckily the blast it's self takes no more than 10 minutes really.

My appointments were mainly scattered at rubbish times for having family but we got round them with various help,.. and of course the fog was terrible the days we had teatime appts!

We managed a lovely weekend cacthing up with a big group of friends for curry Friday night, a spot of parkrun including baby cuddles, chilled out Saturday, Photo walk sunday, got rid of my car sunday and went for roast dinner with family in the afternoon..

Other changes which have been keeping us busy is that due to steroid use to manage all the other side effects of my cancer by blood sugar has been very high, although I am NOT diabetic I am now being treated as such and Adam has been having to help me monitor my blood sugars.. on Tuesday night after more out of hours support from the Hospice and out of hours GP I was admitted  via A&E for 20 hours... poor Jo took me in and there was a distinct lack of any good looking Drs on duty.. very disappointing.  Eventually I got a bed and Jo left me bleary eyed at 2am,,, always grateful to my sister for taking care of me and protecting me.

On Tuesday am I had my Chest and Abdo CT scan ready for working out the treatment plan Post Disney with the Oncologist this afternoon.

The admission was not a great one, I'm always happy to shout about good service saidly this was not!
Gina and Heather came to visit, and were just in time for the insulin pen lesson.. and to see the nightmare I was having with my mad (bless her.. I was ready to ring her neck) ward neighbour and deliver me a cup of tea..

So that is where we are at. I had one thing planned in this week to look forward to and that was a trip to see 'The Girls' which is just opening in London this last couple of weeks and finishing it's previews.. that was for last night and to really make sure I was going to be up to it I left the decision on it we would be going until lunchtime, and then booked the taxi door to door.. a great way to travel and made the evening possible with my friends.

Disney is now one week away.. super excited and lots of rest next week to really make sure I can be in the right place ready and rested for it. Packing will get underway today ready, along with hoodies arriving for us all ready to remember the trip which are staying a surprise for the boys until we arrive now.

So onwards and upwards, after a rough 2 weeks, cinderella did get to the show.. food is very boring avoiding un-needed sugar so no wine and cake and goodies at the moment really, but I continue to plough on and make the most of what ever I feel well enough to do while taking enough rest on to not miss out on the super important stuff!