Younger Women with Secondaries Together - Bristol

This weekend I was privileged enough to be able to attend an event in Bristol organised by Breast Cancer Care for women aged under 45 specifically with Secondary Breast Cancer. I have actually been on one of these awesome weekends before in November 2012 in Brighton when I had my primary diagnosis.

Whereas in 2012 I was pretty apprehensive about going to the event, this time because I’d connected with most of the ladies going on this one via my YBCN Facebook group I was more excited! We’d all chatted in advance and worked out where we were going to meet etc so my planning side felt pleased 😂

Channelling a French vibe:

I made the mammoth train journey down to Bristol, jumped in a taxi and headed to the lovely Mercure hotel. As before in 2012, everything about the weekend was funded, the hotel, meals, speakers etc. As soon as I arrive to check in, I was met by a huge sweeping hug from Mairi. Had never met the lass in real life before, but everyone’s Facebook connection is so strong it felt like I knew her already 😊

I went to my room, dumped my stuff and headed to the bar. Spotting my girls, we all hugged and started to chat, it was awesome to be with them all for real! Hugging Pilar, Nina and Lisa after chatting for so long was incredible. I also met some “newbs” who weren’t part of the YBCN group who I recruited into the fold. We all got to know each other very quickly and our sense of humour matched perfectly. I knew I’d made lifelong friends when I hugged Bubbles, laughed until I couldn't breathe with Bev, Dom, Steph and Myra, talking about Elmer Fudd & Popeye 😂, Boo's cider shits, our tits, nothing off limits - I think I got to bed about 2am!

The next morning I headed upstairs for the official start of event. I was given a name badge that was immediately adjusted to Lily by Bev! The night before Bev was convinced she had met me somewhere before, she couldn't work it out until about 4 hours later when she shouted Lily Allen at me 🤣

We were called into the main room where the running order of the weekend was explained, there were a few general sessions about treatment, trials etc and then various break-out groups which we had specifically chosen as of interest to us. After a chat about medical advances and other topics we headed down for some lunch. My afternoon breakout group was about Palliative Care and the misnomers about what this is. Other options could have been:

• Adjusting/adapting to a life-limiting illness
• Relationships & communication

Mine was interesting and clarified a few things in my head, however it was a little Bristol-focussed. I understand as they obviously could not cover all areas in the country, and different areas have different levels of care etc. What was good was the explanation that palliative is not literally as you are dying, it’s everything they can do from right now to help.

I also then did a session on exercise and what was possible with my mets, and as a result I have bought some resistance bands.

We then had chill time so Lisa, Boo, Bubbles and I got some snacks and drinks and relaxed in Boo's room. Then I went back my room, got ready for dinner and had another wicked night full of fun and giggles.

The next morning I got ready into a pretty dress 🙂 Lisa loved my priceless £2 watch and ordered it in about 3 colours, good old Amazon from China 🤣

 

We started in the same large room where we had an interesting session on clinical trials. If anyone would like the presentation on this, please get in touch and I will happily share.

We then had our breakout groups where the options were:

• Talking with/supporting children - sadly obvious not one for me 😪
• Adjusting/adapting to a life-limiting illness
• Sexuality and intimacy 

I chose the life-limiting illness session. It was interesting but felt a little more like a group therapy session rather than actually getting coping tips. It was very helpful though and I got the chance to speak about this blog and how cathartic it was which was very cool. 

Then we had lunch and the event was over! It went so fast but it was so good. My heartfelt thanks to everyone at Breast Cancer Care for making the weekend happen. I got some amazing information but the best thing by far to come out of it was connecting to people and making amazing friends.

The Bristol Bitches Mascot is living with Boo  😂

04/08/2018 - I can't quite believe this. RIP Mairi. Shine Bright. I don't know how the fuck this happened so fast. I am in shock. You were so well at Bristol and the first person to hug me. Fuck you cancer you utter utter bastard 😓

Giant Polo of Joy

My 3 month check-up CT scan is due, joy. Plus it ties in with the one the onc said I needed to see if my spine is actually better or worse.

I know it’s needed, I know a CT is quicker than an MRI, still not fun though and there is just so much hanging around waiting for all the different elements.

I work in the morning and then head over to Michelle's who is kindly taking me to the scan. We head to East Surrey and the waiting room is absolutely packed and so boiling hot. I have to drink a litre of water ready for the scan. Mish and I are so sleepy waiting as it’s so warm!

Eventually I’m called through for my scan. They actually get the cannula in first time, I am amazed! I answer the usual joyous question about being pregnant 😞 and get on the bed, go through the giant polo and get it done with. It all feels so routine now! It’s over within 20 minutes. 

I meet Mish in the CT waiting area where you have to wait again in case of a reaction to the contrast. It’s all fine as normal so they remove the cannula and we are free, huzzah. 

The Greek Dyno-Rod

⚠️ Epic post alert ⚠️

We had been in the Isle of Wight for a few days and I noticed I was getting more and more breathless.

Rob, the doggies and I went for a lovely coastal walk along the cliffs, but it involved scrambling, stairs, stepping stones, pebbles along the beach and steep climbs. The end of this walk was a steep hill, and at the top I was so breathless I thought I was about to vomit and/or pass out.

In the end, just walking from the bedroom to the toilet in our holiday flat was leaving me out of breath. Rob made me go to a local GP on the island and thank goodness he did.

I got to the GP and she examined me and then requested I do a blood test called a D Dimer as she was worried I might have a pulmonary embolism! They were able to do it then and there in the doctor's surgery. So they did the test. The result came back in 20 minutes. Normal results are less than 500µg/L and mine was 1,200! My heart rate was also about 135. That meant a trip to A & E.... 

We rushed back to the flat and let the doggies out to pee and then headed off to the island’s only A&E in Newport. We waited for a small amount of time and then after triage I was taken straight to the ER beds where I had to have a blood test and a cannula.

Then I had an x-ray of my lungs. Basically the result was that I didn’t have a pulmonary embolism but I did have something called a pleural effusion:

Pleural effusion, sometimes referred to as “water on the lungs,” is the build-up of excess fluid between the layers of the pleura outside the lungs. The pleura are thin membranes that line the lungs and the inside of the chest cavity and act to lubricate and facilitate breathing.

Image from pedilung.com 

So that explained my shortness of breath. Basically as the effusion grew larger, it meant there was more fluid in the lining. It meant it was getting harder for my left lung to expand and therefore more difficult for me to breathe. There was chest pain because the pleural lung was irritated. 

The xray results showed that I had 2.2l of fluid on my left lung! That’s over a big bottle of cola in my lung. Think how heavy that is. And I’m only 5ft1! No wonder I was breathless and sore....

The procedure to get rid of the liquid is called a thoracocentesis, basically they insert a ruddy great needle into the pleural space around my lung and then drain off the fluid. Sounds simple enough but pretty ruddy painful. Now you should understand why the post is named Greek Dyno-Rod!

The only drain option on the IoW was a slow drain and I would have had to have been in that hospital until Sunday. Our accommodation was due to run out on Friday, this was all happening on a Wednesday. We had the dogs so obviously would have had to have found dog friendly accommodation. Therefore we put our foot down. We wanted to travel home. The doc was unsure as if there was an issue on the ferry I would have had to have had a helicopter called out! He asked his consultant who gave us the okay to travel. As soon as we got the okay and they had contacted East Surrey to arrange the op there we were out of there!

We rushed back to the flat, Rob heroically packed it all up and we drove to the ferry terminal, crossing fingers all the way that they would let us on. Thank goodness they did.

We turned up bright and early at East Surrey on Thursday only to be told there was no-one there that could do the op!! As I was breathing without oxygen they told me to go away and come back the next day! So as we were on holiday still, we made the most of it and went and saw the new Avengers movie 🙂

Try again! Friday we turn up at East Surrey and this time they say we’re on the list and can come in! Rob and I wait for a while and then I’m sent for another x-ray. Normally when you have a scan of any kind the people taking the images are pokerfaced and say nothing. This time, the man takes the image and then says "how long have you felt this poorly?" I say "oh a few days, I know about the fluid as I have had a scan already". He then says "Ah okay, I was wondering! Most people complain about fluid at 300ml, you have 2,200ml; you're hardcore!"

I then go back to Kingsfold Unit, wait for about an hour and then go through to a side room. The doctor and a trainee explain the procedure, ask me to sign a consent form, give me an ultrasound over my ribs so they know where to shove the ruddy great needle and it begins!

The doctor gives me an anaesthetic and some oramorph and then puts the 15cm screwdriver type needle into the pleural space and attaches a drain. Loads of liquid begins to drain out and I'm taken to the recovery ward.

Just a small needle.... 

The liquid continues to drain out and then the pain begins. As the liquid dissipates, my left lung begins to reinflate. The pain is fecking hideous and I roar and shout a lot. I also cough continually as the air begins to fill back in. It hurts so much.

The doctor comes over and gives me some more oramorph. The morphine makes me feel groggy and I have a sleep. About an hour later I wake up and we're told we can go home.

Here's a photo of me smiling (wtaf!) with the drain in, the 15cm needle and the liquid, which I promise you is not pee!

Thank you Mish xx

The Isle Of Wight

A wonderful trip that deserves a proper post when I am strong enough.

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.

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!