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!

Wednesday, 11 January 2017

Blown Away!!!

Oh My! Adam and I have been absolutely blown away by the support, love and messages since I wrote the blog on Monday evening and even more so since the crowd funding page last night. we can not thank you all enough for your kind words and making disney happen for us. We've not told the boys's all happened so fast!

The irony is certainly not lost on us that today is the anniversary of my 1st Chemo selfie with Jo... how long ago that all feels.

So all we can say from the bottom of our hearts is thank you!

We have also been blessed with lots of kind offers of all sorts of things that will make amazing memories..

Obviously we have already done the build a bear which has been a big hit with Luke and he is taking Mummy bear (mine to bed with him) and traded one of his old bears to sleep with me!

But some amazingly kind offers of practical help and making memories and momentos which is just amazing.

SO thanks go to the following for:

Everyone who has given and shared the crowd giving page... amazing.. lots of your messages on that have caused leakage in a nice way

- Kath who is coming to help the boys with making memory boxes.
- Carli at Mac&Maddy who already made a beautiful present for Adam for Christmas after the order books closed and is doing the finger print keepsakes for the boys for me.
-Glenda at GC Craft Cabin who we are visiting next week to make pottery as a family.
- Noemi Dorgu who is taking a walk with us all and her camera to capture some family time at the weekend.
- Carl who I am yet to fully chat to but we have a plan that may come together.
- Adam B who has put feelers out re Disney..

so things I have booked up already are:

Sunday family time walk and a trip with Nana and Pops to Bletchley Park
Tuesday - Spa day with Jo! then Jake and I are off to a Parkrun celebration evening with Kate and Ash
Friday - Date lunch at Luton Hoo for Adam and I
Sunday - Girlie Take That Evening while Adam is out at a gig too.
Feb Half term - Disney Paris!!
18th Feb - Family canal boat trip with my brothers and families and Pappy and Grandma with fish and chip delivery!

So already lots of nice plans that are in the making.. and so many more in the pipeline...

Oh and Adam made another lush meal from our fresh tasty box last night too... so the skills are improving!

Monday, 9 January 2017

Bit of a shocker..

So on the whole I've not been completely honest with you all! Todays blog is brought to you by the power of alcohol and chocolate..

All my nearest and dearest know that on the 2nd of December we got more information that I let on. It's taken time to get our heads around this and certainly knowing where to start with certain things!

On 2nd December I was told that my persistent cough is actually secondary  cancer in my lungs and liver,

All the staging tests (MRI's and CT's along with bone scans) were redone the same as last year and on the 13th December the news ramped up again and it was indicated to me that time is going to be very precious with my beautiful family and friends,

All the results are in that matter now and my care is long term.. again not a concept to want to deal with 12 days before Christmas. We kept the whole picture quiet from the boys until after Christmas so that we could all make the most of the family time, and we certainly had a wonderful relaxing one catching up with so many special people over the festive period it was really magical.

Cancer has once again given me quite some insomnia so I've been up in the middle of the night, organising and planning, tidying and doing all the things you never round to doing!

As a bit of a spoilt brat and diva this doesn't sit well with me as I just want more.. More hugs, More time, More everything!

I continue to be blessed with having amazing people caring for me and the boys, thank you!
We are also being supported by Rennie Grove Hospice who have already been to see us and will continue to look after me and us as a family.

Over time Adam will need cookery and ironing lessons and a bit of help learning to be a domestic god! (He's been a bit spoilt it's fair to say!) So I trust you my friends to keep an eye on my beautiful boys.

My Chemo this time round is Gem-Carbo which is being much kinder to me on side effects so far and the aim is to keep me as well as possible for as long as possible. A concept that just seems fairly odd at the moment because I DO feel mostly well. I am on daily steroids to control my cough and backpain. if I get in a kitchen cupboard I struggle to get off the floor which is doing my head in, as is going up the stairs as it is more effort than I think is acceptable!

So you may have seen I made bears with the boys at the weekend, It was about making memories with them and each of the bears has some of my hair inside so that they are all linked and unique.
For Luke especially I think that has been a big part in understanding some of what is happening as Jake is much more aware of what we have told them and what it means down the line.. the hardest conversation I have ever had to have for sure!

So our aim is to try do as many nice things as possible to really create lasting memories together while I am feeling fit and well.. so if you have suggestions let me know.. I need to hear them!