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....

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.

MRI Scan and a Gig!

Today was a bloody weird mixture of a day!

First thing I had a delightful MRI at East Surrey hospital. It has been snowing here for the past few days, luckily yesterday Rob put winter tyres on Beppe (my little Italian car!) and we drove to Redhill. The MRI was of my head, spine and chest. It was awful. Normally I am okay with MRIs, I just get on with them because there isn't much else you can do. But since my denosumab last week, I have been having massive pain flares. I had to lie very still on the hard MRI bed, with my head strapped into a thing that felt like a scold's bridle and a weight thing on my chest for two. fecking. hours. When you are having extreme pain in your spine, not being allowed to move whilst lying on something hard is not fun at all. I could cope with the beeping, whirring and clunking noises but it was unbelievably painful to lie that still for that long. Anyway I did it. Legend.

We then drove in the snow to Gatwick as we are having a few fun days in London. We caught the train from Gatwick up to London and got to our funky hub hotel. We chilled out for a bit, had dinner at The Diner and then went to a tiny venue called Hoxton Hall to see a singer Rob and I love called Aurora. There must have only been 250 people there so it was intimately awesome.

She also sung one of my motivation songs called Warrior. Have a listen

Denosumab

I had my latest bone strengthener today. It is *so* much better than Zometa! My poor veins were just not playing ball for Zometa any more. Last time I had it they tried about 6 times to get a cannula in and eventually it worked. I felt like a total pin cushion!

This one is called denosumab, it's something called a monoclonal antibody and it is a quick and (almost) painless injection! Whereas the zometa was done at Guildford (which meant the schlep up there, the being hooked up to an IV, the sitting in the treatment room feeling like a cow being milked), this one is done at Crawley. A quick 20 odd minute drive. They then prepare the injection, jab me in the tummy and away I go.

Obviously like any cancer treatment, it's not without it's side effects. The drug in simple terms aims to rebuild my bones that have been eaten away by the cancer.

In normal bone, two types of cell work together to shape, rebuild and strengthen existing bone:

• osteoclasts, which break down old bone
• osteoblasts, which build up new bone.

Secondary bone cancer occurs when cells from the original (primary) cancer spread to form a new tumour (secondary cancer or metastasis) in the bone. Cancer in the bone causes the normal activity of these cells to change. As a result, osteoclasts begin to break down too much bone. This increases the risk of fractures (breaks) and can cause pain in the bones.

Denosumab works by targeting a protein called RANKL, which is needed for new osteoclasts to be made and to function. Denosumab binds to the protein and stops the production of osteoclasts. This helps to prevent further breakdown of bone and reduces the risk of problems caused by secondary bone cancer, such as fractures or compression of nerves in the spine.

The main side effect I have is pain, pain that needs quite a lot of painkillers, including oramorph (oral morphine), pain that wakes me up crying in the night. The cold weather we are having at the moment exacerbates the pain as well. I'm tough though, I've got this....!

Making Memories in Mexico

¡Hola from Mexico!

Who would have thought it. I have gone from being a frightened, scared to leave the house, agoraphobic mouse to travelling on a plane for 12 hours to Puerto Vallarta in Mexico.

Rob and I have had a fantastic time making memories in Mexico. We have been whale watching, fed iguanas, driven buggies through the Sierra Madre mountains, been to an island powered only by candlelight, bought bread from a traditional Mexican bakery with the ovens built into the mountainside, seen 12 hour old turtles released into the sea, seen petroglyphs from 450BC and sunbathed just a bit.

Happy, happy times xxx

Shining Stars

There are two shining stars in the sky tonight. Caroline, Sophie, it was an absolute pleasure xxxx

Merry Christmas!

I am starting to feel more and more like me every day, Merry Christmas!

Good Results!

I'm very very pleased to let you know that the lesions in my brain are not mets. After two brain scans and some terrifying waiting (6 weeks!!) I received the good news. I'd been waiting for so long because the second set of scans had to go to neurologist specialist teams at St George's. They confirmed that the lesions certainly do not look like mets and that they will scan me again in 3 months to keep an eye on things. Huzzah!

Flying

The light has been switched on! The drug I was prescribed (Efexor SR/Venlafaxine) to help with my (quite frankly debilitating) hot flushes and night sweats is also helping immensely with my mood. I have been more like me now for the past 10 days. I am not scared of going out any more. I hadn't been to the cinema in about 6 months and last night I went. Simple things like going for dinner sent me into a tailspin. I was doing it but I was scared before. At the weekend and last night, I actually looked forward to going out for dinner. It felt like a massive step to be doing it but after it was done I wondered wth all the fuss had been about. I feel like me again! 

Stepping out of the shadows

So I haven’t blogged properly in a long time. The truth is it’s been a difficult ride of late. So, what’s new in JojoLand:

1. I’m no longer on the trial. Ribociclib had some seriously severe side effects which were impossible to cope with. I had already dropped down to 2 pills but it made no difference. We ended up having the “quality vs quantity discussion” but in the end it was taken out of my hands as TC made the decision. It’s supposed to be a wonder drug but with the side effects it causes it’s just not worth it.
2. I’ve been in A & E 3 times in as many weeks. First time for severe back pain, sent away with oramorph. Second time for either a reaction to the contrast I had during or a severe panic attack. My heart rate was at 130 and stayed high for hours.Third time (ie now, blogging from my hospital bed) was for suspected spinal cord compression. It’s now been confirmed it’s not that thank goodness! My MRI scan did show a “white spot” at the top of my spine though, I found out a few hours ago it’s not mets, I burst into tears when they told me. Apparently it’s just “an anomaly” that could have always been there...
3. I had a brain scan. The most noisy, claustrophobic scan ever. I’m waiting for further results on this. They have come back already as “abnormal” which is obviously shit scary. Cross fingers for me please.
4. I’m going to need a new treatment plan. Once I find out wtf is going on with point 3 above then I’ll be in a position to move forward but for now I’m stuck in limbo land.
5. I saved someone's life. I gave a man CPR and made him breathe again.

Strong, Brave, Proud?

I just saw this, it actually feels like someone wrote it just for me....

Missing

I feel like I'm missing. Like the real me is lost. Like I disappeared on May 17th 2017. I keep trying to find the real Jo, the one who found joy in the simple every day things. To stop being selfish and only reflecting on myself and my symptoms. I miss her and I know other people do too. I want to be me again for myself, for Rob, for my family, for my friends, for my dogs but I feel stuck. 

I was talking to my Dad recently and he told me the phrase, "the light at the end of a tunnel is another train coming" and at the moment that's genuinely how I feel. Every appointment we have feels like another shit piece of news. 

I know I'm on "the best treatment in the world right now" for my cancer and that I should be bloody grateful as there are some many people out there who would love to have access to the drug but I'm just finding it really difficult to cope.

Cycle 2 - Mid-way check & cancer elsewhere....

Today we went to Guildford for the cycle 2 mid-way check. Because last week I had some really awful times, we wanted to flag these to TC to get their point of view.

I didn't blog about the awful times because I couldn't, I was physically unable to but I also mentally couldn't. I decided to take myself off zopiclone because I was frightened about the addictive nature of it. So I came off, and then I didn't sleep. I had a few days of absolutely no sleep at all. Not even half an hour. I was taking non-herbal Nytol (diphenhydramine), but it wasn't really working. I was also stressing about my return to work. Even though work have been fully supportive, just initiating an official process was pretty scary. So I was having a combination of no sleep, stress and therefore severe anxiety.

Last Friday, I was the worst I'd even been. I was shaking non-stop all day, it was really horrible, I couldn't get it under control. I managed to do a bit of work in the morning, but I was shaking so much I couldn't really control the mouse or keys. I had awful dark thoughts and couldn't process the simplest of things. Even the thought of letting the dogs in the garden was overwhelming. I felt really very mentally unwell.

Today, a week later, I feel betterer. I still have some shakes, but they are a fraction of what they were. I restarted the zopiclone on Monday and the very night I took it I actually slept. The night after I slept again, less well but still a few hours. On Thursday I got driven into the office (thank you Colin) and worked all day. I'm supposed to be doing a phased return and only doing 12 hours this week, but I've actually done about 24! I need to speak to the "people that be" about this as if I'm doing a "phased return", I need to do it properly!

Anyway, back to today's meeting. I turned up and had my bloods done. The nice nurse found a vein that behaved and took 4 phials and then I went off for my ECG. Obviously I was worried about my QTc given the past issues, but it was 440 which is within the protocol limits. We will get a call later with the blood results, and as long as they are normal, or within range, I'm good to stay on the highest cancer-kicking dose of 3 pills.

We spoke to TC and Avril about the severe anxiety and they listened carefully and wrote down everything I was saying. We discussed it all and they said that going forward they could prescribe me diazepam or lorazepam but that they didn't want to prescribe it immediately because of the addictive nature of it and they want me to try without. Hmmm. I understand why, but I simply cannot have another day like last Friday. TC said that the anxiety is also probably down to my oophorectomy and lack of hormones, which sadly they can do nothing about. So I kind of feel a bit stuck. I need to just constantly take the zopiclone and see what happens.

I think it was probably a combination of no sleep, coming off zopiclone, return to work stress, general anxiety (because wtf not?!), lack of hormones and fear. Now I'm back on the zopiclone and "official" work is actually not as scary as it seemed a week ago I think I can do this.

In other news, TC just casually dropped in to the conversation that when they removed my ovaries they analysed them. They actually had some cancerous cells on them. Fuck. Apparently it changes nothing about my diagnosis as they are now out (and thank god they are) but they have to tell me anyway just so I know. So going through that op was bloody well worth it then. Despite all the night sweats, hot flushes and hormonal changes that I now face as a small part of my daily set of challenges, the fact I had cancerous ovaries would have been yet another battle to face. Bloody hell!

End of Cycle 1

At the moment it feels like I'm having non-stop hospital visits. It's so draining and I just want some normality back in my (and Rob's) life.

It feels like Groundhog Day. We went to Guildford hospital, I had my bloods done again, had an ECG done again and then met with Avril. We talked through my symptoms and about how sad I feel. I just really feel low. I need to pull myself out of this pit of sadness but at the moment it just feels like I'm wading through sand. I told Avril about my tooth pain and she said I was to keep an eye on it. She also checked my last bone scan and there were no mets in my skull or jaw which is a good sign. It doesn't explain the pain though, perhaps I have been clenching my teeth in my sleep but it just feels really localised.

Anyway, after an hours' delay, we met with TC. My QT rhythm was normal so I'm back on the largest dose of ribociclib - 3 pills. I'm bloody nervous of this but I have to try and trust that they know best.

I asked TC about the dependence on zopiclone and he said not to worry, if it's helping me sleep then just to carry on with it and prescribed me another month's worth. I hate how it gives me a metal taste in my mouth though and also that I just don't fully sleep still. Everything I have read about it says that it's addictive, you shouldn't take it for more than 2-4 weeks (I've been on it for about 2 weeks now) and that you should only really take it if you can guarantee 7-8 hours sleep. I definitely am not getting that, I wake up all the time with night sweats. I'm struggling to know what to do!

We then had to wait around for 3 hours(!) for the next cycle of prescriptions to be dispensed and eventually we drove home.