A Painful MRI

My 3 monthly MRI is due. Yay. Not. Pfft. I hate MRIs, they are so claustrophobic and loud and painful, bleurgh. This one also ties in with the one my onc requested I had at the mixed bag meeting.

Beppe is currently broken 😞 There’s an issue with the coolant or something so Lesley at work has very kindly been driving me to and from the office. She kindly takes me to work today and I work all day until Rob picks me up at 16:30 and drives me to East Surrey for my scan. 

As this scan is my 3 month check, it’s a long one too. The nurses take 7 bloody tries before they get the cannula in. It’s not their fault. I hate my veins and I bet the nurses do too! 😥 I’m in the tube of hideousness for almost 2 hours. It’s loud and bloody painful. Painful because I cannot move and my back is so ruddy sore at the moment. Also painful because they strap a chest plate type thing on me that pushes on my sore chest. They have also properly clamped my ears in and they hurt too! The music that sometimes plays through the headphones to mask the noise is broken so I just have to lie there listening to all the loud noises. I try to pass the time by singing to myself, but then that makes me dance my feet. I get told off for moving and they have to restart part of the scan. Oops. Poor Rob is just sat outside, playing on his Switch, bored out of his mind. Eventually it’s done. I am helped off the bed because I feel like I could collapse. I am busting for a wee, I get dressed, go to the loo and as I am getting up I catch the cannula and it rips out of my arm. Blood pours everywhere, all over the floor, Rob goes grey, uh oh. The nurses clean me up and we are finally allowed to go.

On the way home in the car, I reflect that I’m actually fully expecting to see progression when I get the results of this scan. My back is immensely sore at the moment. I just cannot see how the spine has not got worse. I take pain relief constantly. At work I use a heat pad non-stop. I am fed up of popping so many painkillers, taking nightly oramorph and disturbing both Rob and my sleep, it just cannot carry on this way. I have already made my mind up that when I see Dr P tomorrow I will be asking for a blast of palliative radiotherapy on my back, progression or not. This will mean I probably have a week of awful pain whilst the rads do their thing but then hopefully some pain will ease. 

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.

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

Not Again....

*Spoiler Alert*

When I was younger, I used to have something called Trichotillomania. Basically, when I got anxious, nervous or worried, I used to twist my hair round and round my finger and pull it out at my crown. It led to me having a big bald spot in the centre of my head which I covered by brushing my hair over it. I eventually grew out of it, but I've noticed that now when I'm in the same anxious state, I continually touch my bad boob. Not in a sexual way but in a squeeze it, feel it, search it, sort of way.

About a fortnight ago, I found out that the company I work for is merging (in truth it's an acquisition) with another company, and as a result my job is at risk. SBG (Self-Boob-Groping) goes into overdrive. And then I find it. A lump. No no no. Oh please no. Shit. My already stressed out brain goes into meltdown. How in the heck am I supposed to process this much stress. We have just moved house (said to be one of the biggest life stressors), I am potentially losing my job (another stressor) and now another lump. The trouble was, as soon as I found the lump/ridge/oddness, I couldn't leave it alone. Which made it swell. Which made me feel even worse. Which made me touch it more. Complete vicious cycle.

As it was my time of the month, I decided to leave it a week before calling the doctor. During your period, hormonal changes and fluctuations can cause your breasts to feel lumpy. I put a massive plaster over it to stop me touching it, and hoped against hope that it would disappear.

I desperately tried to put it out of my mind over that week but I couldn't. I didn't tell many people about it (I had to tell HR at work because of the impending job loss), because admitting I'd found something and saying it out loud somehow made it more real.

A week passed and I peeled the plaster off. It was still there. Felt myself about to break, but managed to centre myself and use some of the calming breathing techniques I learnt on my Cancer Survivorship Course last year. I waited until 8am when the doctor's surgery opened and made the call. I had to call 24 times as it was permanently engaged, when I finally got through I was given an appointment for that afternoon.

I went to the doctor's and was sat in the waiting room for about 15 minutes. I could feel my heart rate rising with every minute sat there. I was eventually called through, and as it was a new doctor's surgery (as we have moved house, I also moved doctor) they didn't know any of my medical history. The male doctor took notes and then called in a chaperone. He gave my boobs and armpit a good feel and confirmed he could feel what I was talking about. He said to me that he didn't think it was anything significant, but as it was definitely *something* and given my medical history, he had to refer me.

When a doctor suspects a Breast Cancer, you have to be referred under the 2 week emergency referral period. I was called the very next day (Wednesday) and was given an appointment at the breast clinic for the following Thursday.

The next day a letter arrived in the post, the NHS stamp in the right hand corner, familiar and sinister, instantly recognisable. I open the letter and it tells me everything I already know. I have an appointment at Mr Ball's One Stop Clinic at 10h20 on Thursday next week and it details all the procedures I *could* go through. I read the letter. A One Stop Clinic does mean you get the results on the same day which is something at least. I digest all the info. But I know all of this already. Which is what makes it worse. Last time I thought it wasn't anything. What if it is again....

What followed was the longest week ever. It made me remember the wait I had before. Not only did I have this to contend with, but in the middle of the wait, we also found out more about the new work structure and my role as it is now doesn't exist. How much stress is one person supposed to cope with :(

I don't know how I got through it, but Thursday eventually arrived. I spent the morning feeling sick, being sick and crying, as I was very much aware that within a few hours, my world could be right back in 2012 again, but this time with the threat of not having a job. Rob drove me to Crawley hospital and we were told that the oncologist was running half an hour late. It's always the way but it does absolutely nothing for your nerves.

Eventually I was seen by Mr Ball. He ran through my medical history and then felt my boobs and my armpits. I just about held it together, lip quivering and a few tears falling. He then said to me that he thought it was scar tissue but to be 100% he wanted me to have a Mammogram and Ultrasound. He said that if the radiologists thought it was serious, then I would need an MRI as well which would involve another weeks' wait for results. I knew this was coming, but I feel horribly sick. There's a term called Scanxiety, it's the fear cancer patients face when they know scans are approaching and would 100% say I suffer from it.

I walk round to the x-ray department and am told where the mammogram waiting room is. I know already. I've done this before. Rob and I walk there in a sort of brain fog. And we sit for another 40 minutes. The wait is excruciating. I'm the youngest person there by a country mile (what is a country mile anyway?!) I'm called into the mammogram side room to confirm my details and I burst into tears. The lady doing the mammogram is lovely. She tells me she remembers me from before. I suppose you would do seeing that I was 28 at diagnosis and everyone else in the waiting room looks over 50. She also tells me that as my annual mammogram was due in December/January, this one would be replacing it. I sit in the side room for 5 minutes and then I'm called through to the room. It's hideously familiar. My boobs are scanned and squashed, it hurts but I know it's what's needed. I try and read her face but she gives nothing away. She must have her game face completely perfected as she does this every day.

I then have to wait another 30 minutes for the ultrasound. I am called to the room. I take off my top and lie on the bed. Tears fall again. The doctor doing the ultrasound walks in and tells me that the mammogram looked clear. A little bubble of hope rises in my chest. He then spends a good 10 minutes performing an ultrasound on the area I have found the lump in. He is very kind in the way he talks to me. He has a soothing voice which calms me a little. He then turns to me and smiles. "It's scar tissue Joanna" he says. I fully burst into tears. Overwhelm. Happiness. Relief.

They want me to keep an eye on it anyway, just in case. I have my follow-up appointment in 3 months that I had booked in anyway (it was due to follow my January mammogram), and they will no doubt check in on it again then. But for now, I have one less life stressor to worry about.

Panic over.

Good News

Hoooooooooooray!!

Today I went to the surgeon to discuss the results of last weeks' MRI & mammogram to see whether I would need an MX or a Wide Local Excision (aka WLE). When we last met (because of the microcalcifications that were present when I was first diagnosed) they were erring towards the MX. However, chemotherapy has worked its magic :) I appear to have had 'a complete radiological response to chemotherapy' so the whole MDT are really pleased & I am now having a WLE instead.

Am booked in for surgery on 18th December, so although I'll feel tired for Christmas, at least it won't be the larger operation they were contemplating. Does mean I will need around 3 weeks of radiotherapy in Guildford every day (100 mile round trip) starting sometime in January, but that'll be another road bridge to cross when I come to it....

Little postcard from Han     

The MRI

Today I went to East Surrey Hospital for my après chemo MRI. It suddenly occurred to me whilst I was in the MRI waiting room, that if you haven't had one before, then the prospect of it must be pretty blimming daunting (& to be honest, it still is fairly horrid even if you have had one before).

So, although I had had an MRI before, it was right at the beginning of this rollercoaster, and to be honest with you, I couldn't really remember what had happened. I thought therefore, it would be a good idea to explain exactly what happens, to try to alleviate some potential fears.

Firstly, what is an MRI? Well, according to Wikipedia, an MRI (Magnetic Resonance Imaging) is a way of seeing the body's internal structures in extreme detail.

An MRI scanner is a device in which the patient lies within a large, powerful magnet where the magnetic field is used to align the magnetization of some atomic nuclei in the body, and radio frequency fields to systematically alter the alignment of this magnetization. This causes the nuclei to produce a rotating magnetic field detectable by the scanner—and this information is recorded to construct an image of the scanned area of the body. Magnetic field gradients cause nuclei at different locations to rotate at different speeds. By using gradients in different directions 2D images or 3D volumes can be obtained in any arbitrary orientation.

MRI provides good contrast between the different soft tissues of the body, which makes it especially useful in imaging the brain, muscles, the heart, and cancers compared with other medical imaging techniques such as computed tomography (CT) or X-rays. Unlike CT scans or traditional X-rays, MRI does not use ionizing radiation.

To start with, you are sent your MRI appointment letter and given a questionnaire (similar to this one) to fill in.

When you turn up at the MRI department, the image radiographers explain what is going to happen. I was told that I would be inside the MRI for around 20 minutes - but I have read in some cases people can be in the tube for around an hour, so it must vary from person to person.

Then then asked me to strip down to my pants, pop on two gowns, and remove all metal objects. This means you need to take off all jewellery (including your watch) and then put them into a locker.

After that I had to get onto the bed and they told me they were going to put a cannula into a good vein. It took them a while to find one, but they eventually found a good one in my hand. The cannula was put in because I was having what is known as an MRI with contrast, where half way through the scanning I would be flushed with dye. (What the dye basically does is enhance scan images).

I was then led through to the MRI room where the scanner was (East Surrey have this year had a new £750,000 MRI scanner installed which is unique in the UK) & they put a marker (which looked like a cod liver oil capsule!) on the side of my breast.

This is what an MRI scanner looks like:

I was then asked to open my gowns, lie face down on the table (which looks like one of the ones you find in spas when you're having a massage) & position my boobs. The compartments I had to put my boobs into can only be described as feeling like the salad drawers in the fridge!

I then had a huge pair of headphones (no music, just to block out the noise) placed on my head, given a buzzer to squeeze if I felt I needed to, and told to lie very still. This is probably a good point to remind you to use the toilet before you have your MRI as you can't move during it, and needing a wee isn't very conducive to staying still!

I then had a cushion out under my legs which the automatically inflated & asked me to position my arms above my head. The table then automatically moves you backwards into the scanner & it begins. I can't tell you if it was dark or not because I was facing downwards & I kept my eyes shut the whole time. I had to also keep reminding myself to breathe as I found I was holding my breath!

The noises are very loud and sound almost electronic or like computer game sounds. They are also not rhythmic and are different lengths & frequencies, so rather than listen to them, I tried to just block them out by thinking of other things. I found this YouTube video helped prepare me for what it would sound like.

About half way through the MRI radiographers spoke to me, asked if I was okay and then explained I was going to be having a scan which would last about 8 minutes. That happened and then they spoke again & told me they were going to automatically start the dye going in. The dye felt cold up my arm but nothing else. Then I had around another 15 minutes of scans and it was finished.

The table then releases you from the scanner & the radiographers sit you up very slowly (as my legs had gone to sleep). They then took the cannula out of my hand, I got dressed and (after being told to drink lots of water to flush the dye from my system) I was free to go.

The thought of the MRI is definitely worse than being inside it but I'm still very glad it's over and done with.

Part Deux

It's coming into week 3 from my last chemo & today I had a meeting with my surgeon at East Surrey Hospital. The surgeon is pleased with my response to chemo & all the signs say that the lump has really shrunk.

This means that my next steps are an MRI & mammogram within the next fortnight (I hate MRIs, so claustrophobic!) Once I've had those, the results will determine if I have a lumpectomy or mx (mastectomy). This is because although the lump has shrunk, I do have some microcalcifications behind the lump which they want to investigate in case they are DCIS. If they are, then an mx will be on the cards, which is (yet) another thing to contend with. However, everyone I've spoken to through my forums, at Olivine, & through a young women's group on Facebook, say that chemo is by far the biggest challenge (compared to surgery) & I've already completed that mofo.

After the meeting with the surgeon, we met up with Carole, my Macmillan BCN, who explained a bit more about surgery, the mx, reconstruction & a few other bits. I also showed her my nails (which have completely yellowed), but she said she thought they looked pretty good compared to others she's seen, so fingers crossed on that one.

All a bit overwhelming but at least I have the start of a plan for the next stage in this journey.....

Poking & Proding

Rob drove me to East Surrey Hospital with us both feeling like this was still a dream. We went into the Outpatients Area which was the most dreary, dull and depressing waiting room I had ever been in. We got called in 20 minutes late and saw Dr Stacey-Clear (who we had seen privately at Spire before Florida) who said that the mammogram had shown up something "suspicious" that they wanted to look closer at.

He said that I would immeadiately be having an MRI, an ultrasound and a biopsy. It was then that I started to actually get more concerned, why would I be needing all these tests if it was just nothing.....

There was also a Macmillan nurse called Carol in the room which also concerned me, why would she be there if they weren't seriously concerned about this...?! Carol took Rob and I to a separate room and explained a little to us about why we were doing the things we were.

They led me to the MRI room where I had to have an injection to open up my vein in order for them to put red dye into me so that the MRI images were more clear. I was then asked to lie face down, given headphones (no music - just to block the noise) and the dye was flushed through my arm. The MRI was noisy, claustrophobic and seemed never ending.

Afterwards I was led to the waiting room for the ultrasound and biopsy and I broke down in tears in Rob's arms as I realised what this could all mean.....

They called my name and I went into the ultrasound room. The lady scanned my boobs and armpit and commented that it didn't appear to have changed since before Florida which was a good thing. She then asked Rob to leave and I was injected twice (as there were two lumps) in my left boob with a local anaesthetic and she then took samples from each lump in a procedure called a core biopsy.

I was then wrapped up in bandages and told that Carol would call me with an appointment time to discuss the results on Friday.

Let the waiting begin...