The Next Best Thing

7th June - I had a very painful night, I was dosed up on IV painkillers and was screaming out in pain a lot of the time. My back is so so painful. God this is so shite. 

Mid-morning I have a chest x-ray to see if the fluid on my lung linings is behaving or not. After my chest x-ray Michelle and Rob come and visit me. I have been missing Fagin and Poppy terribly and the lovely Michelle brought me a cushion as a pressie! She said if I could not go to the borders then she would bring them to me in cushion format! The next best thing - thanks so much Mish - you rock!

My awesome cushion!

That evening, the book club girls come to visit. Because I can't go to book club at whoever's turn it is, they bring book club to my bedside! We chat about the book for a tiny bit and then spend the rest of the time gossipping. Such a nice idea - thanks girls.

That evening I have the most dreadful sleep. In the ward next to mine there is a man with severe Alzheimer's. He calls out his wife's name over and over again. He also shouts "nurse, nurse, nurse" constantly. The nurses go to him and he asks where he is and why he's there. They gently explain but then 5 minutes later the same thing happens again. It's absolutely heartbreaking, but selfishly it's also annoying as i really need to sleep. I feel hideous saying that. He then asks to leave, many many times. He starts offering bribes to the nurses and to people each side of him. People tell him it's not possible and he starts to get really angry. He starts talking about killing people. He talks about his past as a "gangster" and says he is going to get his people to follow everyone in his ward and the next and kill them. He also says he is going to "start killing at random unless he's let out". Now I know this is his Alzheimer's talking and that he is unable to get out of his bed, let alone kill anyone, but it's still a pretty scary thing to be listening to.

8th June - Today I was determined to actually make a real effort with my walking. I manage to walk (with my walker) all the way to the end of the ward. I am bloody proud of myself.

Because of the amount of blood i keep having taken from me, I asked one of the nurses to find out what my blood type is. No reason other than curiosity. I'm 34 years old and have never found this out, so i might as well take the opportunity where I can. Turns out I am B+, the same as my mum .

Back in February, I had an appointment where I found out I had neurofibromatosis type 1. The doc at the time said it was highly likely I had it based on my skin. However they wanted to test me to 100% confirm. Today I got the news that they were somehow able to test the 3 tiny drops of blood they got from my shitty veins and it's been confirmed that the reason I have NF1 is due to a gene mutation. It changes zip, but I suppose it's nice to have the explanation. Dr P will love this for her write up of me for her case study!

A Mixed Bag

Colin took me to my appointment today, bit of a mixed bag. They still aren’t sure if my spine is better or worse! I’m a complicated beast it turns out. Basically one of my tumour markers CA125 has risen a fair bit since they were last tested, however the other tumour marker (CA153) has gone down! They really aren’t sure what’s going on! So my onc wants me to have another MRI and a CT. These actually tie in with my regular scan checks anyway so all good. If the area at the base of my spine has got worse, then I’ll have to have some radiotherapy. Rads is fine though, I can defo cope with that.

My onc has asked me if I can be a case study! I’ll be written up (completely anonymously), as an example of not rushing into unnecessary treatment. So if another less savvy onc than mine had seem my brain scan and assumed it was mets, they could have gone straight to treating them. However, mine looked at my notes and considered my potential neurofibromatosis. Thank goodness she did.

Basically I have cytomas in my brain which are benign and are as a result of my NF1. She could have just assumed they were brain mets. So that’s why she wants to write me up! I’m interesting medically because:

- I was diagnosed young first time round, just 28

- I have secondaries

- I have neurofibromatosis type 1

Then we went up to Comet Ward for my denosumab, easy as ever, injection in the tummy and that’s it.

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....

Fun in London

After the gig yesterday Rob and I went to a really funky place for breakfast called The Cereal Killer Cafe. There were loads of retro cereals there and also Rob and I shared a pretty wicked hot chocolate!!

We also went to Fortnum and Mason as Rob had never been before!

Rob treated himself to a lush new perfume and some marzipan fruits!

We then wandered around a few shops and Rob bought me a new hat because of the snow (which was crazy heavy at this point!), I think I'm rocking it.....

In the evening we went to Alex and Milly's engagement party and then for an awesome curry at Dishoom.

Tomorrow we have the meeting with the neurofibromatosis doctor to see if I actually do have it or not. I'm not really nervous about it as I'm pretty sure I do have it and as I don't have to have any treatment for it, for me it's more of a box ticking exercise.

White Coat Syndrome

What is it about hospital appointments that fill you with dread? On the day the NHS stamped letter arrives in my postbox detailing my latest appointment, that familiar feeling: racing pulse, sweating, shaking and that dull, nauseating stomach sensation takes over. I'm starting to move on, to adjust to a 'new normal' and this just jumps in the way of my pathway. 

There are days when sometimes I don't think about the cancer, when I don't constantly touch my 'bad' boob, and when I don't convince myself that every last ache and pain, cough and cold is the bastard rearing its ugly head again. But there are also days when I do.  

I got my latest appointment letter for my June check-up in January. I dutifully wrote in my diary when it was, asked the hubby to diarise it as well, and filed the letter away in my cancer folder. Oh yes, the world is such a fun place when you have a 'cancer folder'.... Last week they phoned up to tell me that the location of my appointment had moved from Crawley to East Surrey. You would think by the way my body reacted that I had just been told some awful news, I felt ridiculously sick. I'm such a planner that changes in general make me a bit nervous, so I think when it comes to oncological ones I'll always be even worse. Plus East Surrey is the place where I was told I had cancer, and where I had my two operations. It doesn't really hold good memories for me you could say. But, thinking about it, it was also the place where my surgeon told me that he had cut every trace of the fecker out of me. So I should turn it on its head and make it a positive.

This morning was my 6-monthly check-up. Had been feeling okay since the 'location blip' but as soon as I woke up this morning, I felt the nausea, the heart rate and the pulse rising. I've been feeling very well in myself and noticed no changes other than the rib swelling. But still. I tried to centre myself with some of the CSP techniques and controlled my breathing as much as I could. This calmed me a little. 

Rob drove us to the hospital, we checked in, waited and were seen (on time!) by a super helpful member of Dr Houston's team. I'd never met him before but he was great. Answered all my questions, talked me through the 'proper way' to self-examine and just really put me at ease. In the appointment we mentioned my various medical pre-history like neurofibromatosis and increased blood iron. He didn't seem concerned but sent me for a blood test anyway. It was good to have someone that actually listened, and that I felt cared, unlike previous 6 month check-ups where I've just felt like a tick on a list.  

Anyway, all signed off now until next mammogram in January. It was due in December but they moved it for me as I mentioned the last one being in December had really put a dampener on Christmas.  It's definitely the little things that people in the medical industry do which make a massive difference.

Heart rate and pulse are slowly returning to normal now! Back to reality, on a train off to the busiest part of the wine trade calendar, London Wine Trade Fair. Then this weekend it's time for one of my bestie Amy's hen party, mega excited.

New normal, over and out. 

P.S. It's actually got a name and everything so guess it's not too strange I feel that way...