Downward Slide of November

This is a month I wanted to write so many things because so much has happened. On the way back from Staffordfordshire we witnessed from literally feet a way a fatal car crash and spent hours by the road with the police which really makes you think!

My husband and I got imagine it tattoos on our hands of the dandelion clocks.

We had our first years anniversary and my birthday..... Each and every one there is so much to tell and new plans and achievements with the Bucket List!!!

However, the biggest news is always going to be the medical, I really wish it wasn't but it is now unavoidable as last Monday proved! I have started lots of new drugs to control my Cushing's and the first round of a new chemo. In the week after I then caught a chest infection. Long story short by Monday I find myself in Norwich hospital on fluids IV antibiotics and oxygen for 24 hours just to breathe.

I am home now but stupidly weak and tired under the influence of all these drugs. My husband has his last half marathon challenge tomorrow and the whole thing has thrown out his training and then we leave for Rome on Wednesday as our anniversary celebration so all I can do is rest up and try not to be in the way. I hope this is passing and not the signs of times to come!!

Xx

Some truly amazing experiences

Know this is going to cover quite so weeks; writing this blog has got so far behind that I worry it is impossible to do justice to everything that has passed recently although I will do my best.

Since leaving hospital and having to make some really big decisions there have many people striving to make sure that whatever the medical turnout that my bucket list still gets achieved. Some have made very generous financial contributions and others taken it upon themselves to gift me with the experience itself. Above all I have have felt unbelievably privileged, loved and I have to say guiltily undeserving!!!

Where to start?

Oh yes my husband gave me half my birthday present early in the form of matching tattoos, just in case chemo ruled them out! They are on our hand and are the small dandelion clocks that represent our Imagine It venture. So tick another off the list!

We went full out and dressed up in the whole gear for a fancy dress party as Star Wars characters, I went as Leia in a long white dress, knee high boots and of course the pretzel style wig!! We danced and I faced up to the camera and yes there is another resounding tick on the canvas.

In other news I had a free lesson on a silver medal winning classical equation horse which is the equine equivalent of driving a highly tuned sports car and was able to perform all sorts of movements I would only dream of on my own steeds, with the invitation to go back anytime!

My husband and I spend a couple of days in Staffordshire with family and friends at a lovely hotel and visited monkey forest, an outdoor beauty spot where mountain monkeys wonder freely around you!!

To be continued ........ With anniversaries, birthdays, high speed crashes, near falls, plans for travel and cake (every story needs cake) xx

Thank you's

First before I start explaining just how much has gone on in the last few weeks I really want to express my thanks to all the people who have helped us through the whirlwind that has been October.

People have gone out of their way to make sure my husband and I have been fed and watered, caffeinated ( ;) - very important!). We have gifted with love and a great deal of money from charitable causes including money for the ACC research project.

The bucket list has been able to see some new ticks and there are great plans in the making especially with our trip to Rome at the end of the month.

And for our lucky stars and a some excellent medics and a true blue policemen for seeing us through two frightening road incidents ( we are fine but witnessing them was not! )

I hope you all know you are and if you've touched our lives thank you.

Xx

Not so much behind as trailing in the distance...

I have so much to say the next few blogs are starting to feel like everest but today I will get started so watch this space!

xx

Bittersweet friend of Mine

Medically there has not been much to update you with recently for the direct and simple reason no one has updated me. I have been making weekly trips to hospital for day series blood tests and it it is dependant on these results how they decide to treat my symptoms. The treatment of the tumours being a different ball park altogether.

Now however, now there is a plan or at least a start of one.

1. I will start phase two of chemo next week. Different drugs, different side effects, different timetable; all exciting new instalments to come!

2. However part two however is my dear old friend mitotane. This innocent chalky white pill was my former nemesis post surgery for over a year. It is an adrenal inhibitor and when taking it without active tumours is very much like functioning after a night out on tequila. For some it is effective and prevents the cancer growing but the didn't appear to be the case for me and earlier this year I stopped taking it. Ironically it does seem to have been having some effect because it had kept some of the tumour not growth but activity lower.

So here you are mitotane... Back.. (From outta space, your prescription just walks in, the nurses apprehensive look upon her face.... Ok no more Gloria I promise... It's five am I'm a little addled.......).and not alone. Along with blood pressure pills, metyrapone, ketakonazole, and spiralactone. Not to forget the odd high dose potassium supplement. Let's see if you can keep me not just surviving but living that much longer!

Xx

Waiting waiting waiting

It is all the waiting game now. They have to run some serious lab magic on my bloods; you know light of the full moon, double, double, toil and trouble; fire burn and cauldron bubble..... and hence we are looking at Thursday for complete results. In the meantime I have been let out to wait. The results will allow detailed analysis into the tumours activity and then my endocrinologist can make further adjustments and more tests.

Once I am balanced the next stage of potential treatment to attack the tumours can be arranged if I want to go down that path. There is plenty of time for me to ponder on that and see how it will fit into plans. I am still the boss, still in charge, my life, my body, my decisions.

Xx

Not with a Fizz but with a bang.

Yesterday I had a conversation with my consultant. There are not any blood results to make any useful decisions at this point but we do have a the results from a scan. I won't go into the details but the result of having a break and or the lack continuing treatment whichever way you want to look at it, has meant that my tumours have increased in number and hugely in size. I can't really say what this means yet but it is not good. It explains the pain and swelling in my abdomen especially after eating. It explains my unbalanced hormones and my puffy face. Hopefully next week the doctors tests will have some more specific answers about what those chemicals are and which drugs may help control the symptoms.

This weekend I have been allowed home until Sunday night and will be carrying on as normal not least because my husband is running in the Great Eastern Run.

After that there is some waiting and some big decisions. I will do my best to keep this updated.

Xx