Celebrate

To celebrate my good news, my lovely work took me for lunch today at a gorgeous pub and poured the below deliciousness 😀 #LoveMyJob

Silver Linings

Sometimes in the dark it is hard to see through. This post will be one that I update as frequently as I can with the little (or large) things that are silver linings.

1. The most recent CT scan I had showed some improvement on the cancer fighting front. The node in my clavicle has reduced as has the sternum/chest mass. Although I don't know if it was the trial drug or letrozole that has made this happen, it's a win nonetheless.
2. 10/11/17 - This week I made it into the office 4 times. After my recent A&E admissions and non-stop appointments, this really is a massive win.
3. 24/11/2017 - I had my bone strengthener yesterday. After 8 long weeks. It should have been every six. The win here is that I have been switched to a new drug called Denosumab from the Zometa/Zoledronic Acid that I was on before. It's a win because the denosumab is an injection which is quick and on the whole painless whereas the zometa was an IV infusion which was bloody tricky with my poor crappy veins.
4. Around appointments now I am back to the office full time!
5. 27/01/2018 - I took a 12 hour flight to Mexico and had an amazing holiday!
6. 14/03/2018 - I am loving going to the cinema again. The fear of leaving the house is gone.
7. Probably the biggest Silver Lining of all - I am me again!

Results....

I am fecking delighted to let you know that the cancer in my sternum that was causing the most concern is gone! The cancer in the lymph nodes affected is gone! The rest of my affected bones are stable and there is no spread to my organs. Yes I still have cancer and always will but for now treatment is working!

Rebonjour!

So I have just realised that my posts have not been updating on my blog. They've appeared on my feed but no-one else's! I've hopefully figured it out now so fingers crossed my posts get seen going forward xx

Mother's Day

When cancer has taken away your possibility of being a mum, Mother's Day is particularly hard. The ever continuous rise of social media, the shops, the TV etc means you simply can't escape it. People telling the world on Facebook how much they love their mums irks me somewhat. Please, if you are going to see your mum in person, just tell her. Call her, text her whatever. The world doesn't need to know.

I hate cancer for destroying families that never had a chance to be created, and for tearing apart those that existed before.

Kitty, this means more to me than you will know xxx

Having said all of that, I did have a lovely day cooking a roast with Rob for Mum, Col, Nanny and Granny Clarice xx

CT Scan

Colin drove me to East Surrey for my early doors CT scan. I had to be there for 08:40, which meant rush hour traffic - lovely. When I arrived I had to drink a litre of water. I was asked to change into the lovely hospital gowns and was taken to a waiting room.

After about 10 minutes I was called through, I lay down on the bed, fearing the worst after last weeks' scan and they then told me it would only be 15 minutes long - huzzah!! They also got the cannula in first time - double huzzzah!

I had the scan with contrast which was the giant polo that I have had many times before and then headed back to the waiting room. Once I'd peed and showed them I was having no reaction to the contrast, I was allowed home.

Results from this and the MRI are due next Thursday. Scanxiety time.

Neurofibromatosis

What. a day. I am exhausted. Where on earth to start. Let's take advice from Lewis Carroll:

So, I have been officially diagnosed with neurofibromatosis type 1. (Henceforth NF1).

Rob and I taxied in the blustery snow from our hotel to Guy's Hospital at London Bridge which is apparently a specialist NF hospital. We grabbed a quick brekky and headed up to the NF department. We only waited a little while and I was taken into a consultation room.

The Professor asked me loads of questions, visually diagnosed me and ran a heap of neurological tests. She could diagnose me just by looking at me because of my fibromas, café au lait marks and lots of moles. My case is *very* mild apparently and they want to see me for a follow up in a year (I had to bite my tongue to say "if I'm alive" - morbid I know!) depending on what my latest scans show.

I've had the marks etc (which have never grown or changed) since birth and the only reason I was told to investigate it was because when I had a brain scan *something* showed up. The oncs decided it wasn't mets but were befuddled as to what it could be. So they spoke to me about the potential NF link and contacted the specialists at Guy's. They looked at the scans, said it would probably be a good idea to meet me and that was that. That's also why they're going to look at the scans I had on Tuesday and the CT I have next week.

I also had to have a blood test to check my genes for a genetic mutation. Basically the Prof confirmed I definitely have it through a visual inspection but the blood test is genetic proof. Neither my Mum nor Dad have it so it's not hereditary, it is a genetic mutation so the test is to see where on the DNA or RNA the mutation(s) is/are.

The veins hardly gave any blood though as they're so shit (thanks chemo!) so they might not be able to test after all!!! If they can test the micro amount they got, then the results could take up to 3 months. The results take so long because my NF1 is so mild, they need to find my genetic mutation which could only be one or two strands of wrong DNA. Whereas someone with it worse than me would have more mutations. Needle in a haystack time!

They will stay in touch with oncology in case of any links and treatment plans.

Interestingly, new studies have come out from Finland in the past 3 years showing a link between BC in young women and NF. There are talks in place at the moment to get anyone diagnosed with NF of any type at a young age to be screened for BC from the age of 30. Although I was 28 at my original  diagnosis so wouldn't have been caught by this anyway if my NF had been discovered earlier.... At least all the different teams are talking to one another!

NF1 itself when it's as mild as I have it doesn't require any treatment (thank god!) In a weird way, it is a good thing to have the diagnosis because nf tumours would show up on any scans and could potentially confuse things! It means they will always thoroughly check before any action in case its unnecessary.

So there you have it. I am officially a mutant. I just need to decide on my superpower....