I have no idea how this works.

Earlier this year, before I was diagnosed, I had a couple of tiny but eery experiences that I keep coming back to in light of this week's news. At the start of the year, around the time I'm usually breaking resolutions and making new plans, I started to draw a blank whenever I tried to picture my longterm goals. I've always been a big daydreamer, and keep notebooks full of lists and bullet point plans broken down into ridiculously detailed steps; it's hit and miss as to whether I follow any of these plans and how many points I manage to tick off the lists, but there's always some kind of project/work in progress/pie-in-the-sky idea at the heart of the lists, something that I can visualise / daydream about. I had been focusing on buying my first house and thinking about how to progress at work for a while, but this seemed to vanish overnight. Even when I made a concerted effort to think through the logistics of house-buying plans and other longterm goals, notebook in hand, I had a complete mental block. Instead of the usual onslaught of ideas and bullet points accompanied by zooming off on tangents, I couldn't even begin - my mind just emptied  This lasted for months, and I remember joking to myself "maybe I no longer have a future?!". I didn't truly believe that of course, but this mental block around planning for the future both worried and puzzled me.

A couple of days before I was diagnosed, a colleague was going through some paperwork from HR, and read out some blurb about 'death in service' protocol. Someone in the office made a comment along the lines of "as if we're ever going to need that", and the thought flashed through my head "that's me. I'm going to be the death in service". It startled me, as I couldn't understand where on earth that thought had come from - I was feeling fine and in a good mood, but that line about death in service echoed through my mind at unexpected moments for weeks afterwards, and made me feel really uneasy and a little bit daft. I know that these things are just coincidences, but they play on my mind all the same...

I had a feeling that Tuesday wasn't going to go the way that I hoped. I thought that the fact that I was being called in to talk about my scan results rather receive the all-clear over the phone told me all I needed to know. I was wrong. What I expected was that my consultant would tell me that the cancer had reached the bone at the base of my skull (per the anomalies on my CT scan), and then talk about a new plan of attack. The news he delivered was worse than I had anticipated. Hearing that the cancer was inside my skull, in the dural layer of my brain, took my breath away. When I asked about prognosis and heard that I have 6 months at best, I felt frozen to the spot. This was so much worse, so unexpected, and I was in complete disbelief, unable to process the fact that their words related to me - I felt detached from the diagnosis being discussed. I glanced at my brother, who'd come with me expecting to hear good things about my scan, and he looked so sad and hurt. During the rest of the appointment I shed a few tears, but it wasn't until I got back to Dad's house and he hugged me that I lost it. I sobbed and sobbed in the doorway while he kept saying 'I'm sorry Hannah'.

Since then, I have been all over the place. I'm trying to stay positive and make the best of each day (I've even been changing out of my pajamas before midday!), but I am desperately, indescribably sad.

The day after the consultation was my niece's birthday - 7th - and I went round to spend some time with her and drop off my present. It was so, so difficult. I was trying to be engaged and happy and chat with her and my nephew, while the whole time blinking a lot to stop myself from crying, and feeling sick and stomach-achey with distress. As I arrived I had thought "this is the last birthday of hers I'll be here for", and "I feel so normal, yet this time next year I won't be here. I don't understand", and then "perhaps I'll buy a present to leave behind for her on her 18th...but that's 11 years away (!) - will she even remember me then?!". Thinking about my niece and nephew, realising I won't get to know them as teens then adults, won't know what subjects they like, what music they get into, what their first Saturday jobs are or how their personalities will turn out hurts me physically - I get a headache and stomach ache thinking about it.

More than that though, the thing that distresses me the most is knowing that my dad and brother have been through all of this all before, and only 5 years ago. I know how hard that was and what a toll it took, and I hate the thought of them having to deal with it all over again. I worry about them both anyway, but now more than ever, knowing I won't be able to look after Dad as he gets older, or hang out with Ed when he's feeling sad about his sister / mum. I'm not ready. I've not had enough time with them.

The final recurring thought swimming about in my head is about my friends, and all of the things I had taken for granted that I would experience with them - marriages, kids, parties, holidays, New Years eves, house warmings,  annual trips to the eco shed with the horror that is the bucket toilet... I have, without a jot of tongue in cheek/irony, major FOMO. By the time my friends reach retirement age and start taking SAGA holidays to cat conventions together I'll be 30 years gone, a very distant memory. I've never had huge ambitions or felt that I needed to leave a major mark on the world, but it's horrible thinking of being forgotten, gradually fading from memory as life goes on.

I don't know how other people do this, I don't know how they begin to accept and come to terms with it. I want to, but this is hard.



FECing hell...

SO. What I've been calling 'phase 1' of my chemo has finished; of the 12 weekly doses I managed 11. In the final week my routine blood tests showed a liver issue and anaemia, so my doc decided that I should take a week off and start afresh with 'phase 2' - FEC - the week after.

The three forms of chemo I've had so far have been in the shape of a tablet and two IV bags. I took the tablets at home, and the nurses hooked the IV bags up one after the other with a saline flush in between, and left me to drip away and infuse over an hour or so before putting  up the next bag. The FEC process is a bit different, and from the start seemed a bit more intense. The three types of chemo (F, E, and C) arrive in multiple tubes (like massive syringes), inside plastic bags. The E tubes are bright Tizer red, the C tubes are in bright yellow packaging, and the F is clear and colourless. So far, so colourful.

Before the phase 1 doses I'd be given 5 or 6 pre-medications - little vials that were infused via my IV line, to prepare my body and try to minimise rejection and reaction. A nurse would upload the first pre-med, set the pump going, and then tend to another patient until my alarm went off, signalling time for the next pre-med. This was a fairly drawn out process, especially when the ward was busy and there were alarms pinging left and right - in theory my chemo prescription took 2hr40 if administered back to back, but in reality it was always longer due to the volume of patients and delay between drugs. ANYWAYS. These FEC tubes need to be administered back to back, and there are a load of them (I didn't count, but am guessing about 8 or 9). This meant that a nurse sat with me the whole time, prepping and uploading tubes and checking me for any bad reactions. Mostly I was completely distracted by the novelty of E (Epirubicin) and it's bright red colour - it looked so odd to see something that shade in the IV tube and heading into my body, and made my wee bright pink (glad for the warning about that!).

I didn't feel too bad coming out of the appointment - Dad drove me home, I got ready for bed, went through the 9 or so meds I'd been given to take away, and then went to bed.

And then.

After dozing for a while, I woke up, feeling very, very sick. Curled up in a ball, too-sick-to-be-sick sick. My head hurt, and I felt all-round unwell. I've heard the 'chemo's basically a poison' line of conversation several times in the last few months, but this was the first time I'd truly felt as though I'd ingested something really, truly toxic - at one point I lay there thinking 'is this what it feels like to be poisoned?'. What followed was several days of feeling too ill to shower, dress, leave the house, reply to messages... my one goal, for a couple of days, was to get out of bed when I needed to go to the loo - I've never felt so weak or flattened, and it was frightening. For all of the side effects I accrued during phase 1, nothing prepared me for this. Although there have been days in the last few months (mostly when anaemic) that I've slept a lot and felt utterly drained, this was the first time I felt I couldn't look after myself, and like I needed help.

Wonderful friends brought emergency groceries (boiled sweets and yogurt for sickness) and did my laundry and washing up. Mostly I stayed in bed (going downstairs to the lounge was a no-go due to the whole going back up the stairs issue). By Wednesday this week I was well and truly fed up, and so after Dad took me to my hospital appointment I went back home (proper, Dad's house home). On a practical level, my house has two lots of stairs (you have to go upstairs for the kitchen and lounge) which has been a fucking nightmare. Dad's house still has a stairlift from mum's last illness, and while I'm trying to put off using it as long as possible, it's reassuring to know that it's there. Aside from that, it's just really, really comforting to be home-home, and to be able to lean on family a bit. I still feel weak, but things have definitely improved in the last 24 hours.

"One day at a time" has been my mantra throughout this, but am using it even more so at the moment, sometimes 'one hour at a time' when it's particularly tough. For now I'm not thinking about the other side effects I've been promised with FEC, or about the next dose. I uploaded a pic to Facebook of the bright red E going through my IV during the session; I've been unable to look at the comments on the picture as catching sight of the image now makes me feel very sick - just the thought of having that inside my body and the effect it had. For now it's definitely a day at a time.

Can't end a post without a relevant Jovi, and this one's one of my favourite morsels of ripe cheese. RIDICULOUSLY GOOD BONUS: Springsteen joins them on this version. All it's missing is a cat and Jessica Fletcher. Who says you can't go home?!


Side effects: trying to appreciate chemo while it's beating the shit out of you.

This first phase of my treatment has involved three types of chemo: Olaparib (tablet), Carboplatin (IV drip), and Paclitaxel (IV drip). I had my last dose of Carboplatin last week, and am taking my last Olaparib tablet tonight. Finishing the Carboplatin didn't really register, but the Olaparib has been playing on my mind - taking the final dose feels like stepping off a ledge and not knowing if there's a steep drop awaiting...

From the start Olaparib is the medication that we've pinned all of our hopes on; it's a new, as-yet-unliscensed-for-breast-cancer (I'm on a clinical trial) gene therapy - super clever stuff developed specifically for patients with the BRCA genetic problem. While most chemotherapies kill off healthy cells alongside cancerous cells, Olaparib can switch off the cancerous cells' ability to repair themselves / survive, without damaging healthy cells. A lot of the side effects associated with chemo (esp things like hair loss) are due to the chemo being unable to discriminate between healthy and unhealthy cells, killing off anything fast-growing. In theory, this new approach ought to lead to a more targeted, 'kinder' chemotherapy.

This week I gathered another, very worrying chemo side effect - a suspected blood clot in my chest. I'm due to have a scan this week to determine exactly where it is, and in the meantime am on blood thinning injections. I once read a Kylie Minogue interview in which she described chemo as 'like a nuclear bomb going off in your body'. I get it. It warps and reconfigures everything, nothing is out of bounds - from fingernails to blood, nose lining to bum, all is at its mercy. In spite of this I have a real emotional struggle when people are negative about chemo. I've had so many well-meaning people try to empathise, saying things like 'urgh, chemo's just horrible', 'chemo's such a bastard isn't it?!', 'chemo just sounds like the worst', and all I can think is 'WAIT!...chemo's the one thing trying to save my life!'. The side effects are brutal, and some days they make me feel absolutely desperate, but without chemo...

Anyways. In honour of my last Olaparib, and the last week of Phase 1 of the treatment, I've compiled a list of the side effects that these last 11 weeks have thrown up. If you've yet to have chemo - don't panic. They're not a given. For those experiencing some / all of these - you're not on your own. Starting with the three I've found hardest to deal with, and then just going nuts:
  • Anaemia 
  • Anal fissure
  • DVT / blood clot in chest
  • Menopause 
  • Hair loss
  • Facial rash
  • Dry skin
  • Shiny, tight skin
  • Nosebleeds 
  • Neck pain
  • Bone pain
  • Joint pain
  • Muscle spasms
  • Chest pain
  • Back pain
  • Nausea
  • Fatigue
  • Constipation
  • Bloating
  • Dizziness
  • Broken nails

Tired, tired, tired, tired, tiredness.

Let's end this with a topical Jovi (and one of my favourites):


Diagnosis Murder (ok, cancer)

Yesterday I went to the hospital to have a breast abscess drained. I had first noticed it 3 weeks ago, on the first day of my holiday. I previously had mastitis around the scar tissue on my other breast, and assumed that this was more of the same - especially as I'd just spent a very long, hot 24 hours travelling from home to a small town in upstate New York. It had all of the hallmarks of mastitis - red, swollen, sore, uncomfortable. One thing that was different this time was that there was a hard mass in the breast. That made sense though - the internet told me that mastitis could result in breast abscesses.

So, for the two weeks of my trip I meticulously applied antiseptic cream, washed my bra every day, drank loads of water and slept whenever I felt I needed to. By the time I got back things were looking a bit worse, but I'd already made calling my GP a priority, and so first thing Monday morning went and displayed my manky boob to the doctor. His first reaction on seeing it was "Yep, you've got an infection there". After an examination, he confirmed that I had an abscess, gave me a stonking great prescription for antibiotics, and told me to come back in 48 hours if there was no improvement, saying that I may need the abscess draining.

48 hours later was my birthday (hurrah!) and so I treated myself to another trip to the GP, once again flopped my frankenboob out, and stated that nothing was improving. He agreed, and phoned through to the City Hospital, to have me admitted to the abscess clinic the next morning. I am so, so, so glad that he did.

Having read / looked at / watched everything the internet has to say about breast abscesses, and the merit of fine needle aspiration vs incision and draining, I was feeling queasy but pleased to be getting rid of what was by now a very swollen, uncomfortable lump. I also was secretly hoping to be able to watch the aspiration, as a closet Dr Pimple Popper fan (I know, I know).

After undressing and lying back on the table, the unfamiliar but very nice doctor jellied-up the ultrasound wand, and began to move it over my breast. The images on the screen meant absolutely nothing to me, and I had to resist the urge to shout "is it a boy or a girl?!". Having located the lump she plunged a skinny needle straight into it, which was surprising but not painful. She immediately had trouble, saying that she was having to apply pressure as nothing was appearing, then fished around a bit, and withdrew the needle with what looked to be only a small amount of blood within it.

And that's when it all went <ahem> tits up. Both doctor and nurse went from pleasant and friendly, to super-smiley and upbeat, explaining that they weren't dealing with an abscess, and that they were going to give me local anaesthetic and take a core biopsy. One look at the size of the needle (it looked like you could shoot arrows through it) and I was very grateful to be having the anaesthetic. As she took the biopsies, Dr Hamilton told me that she believed this to be a "breast lump" - I was confused, thinking "well yes, it's not a bum lump is it?!" and only realised moments later that she was using "lump" as a euphemism for tumour. At which point, my eyes became exceedingly sweaty. I kept doing that futile thing, where you press your finger up against your lower lid, partly to wipe the tears away but also to stem any further tears. Futile.

She took four biopsies in total, and they were… unpleasant. Not painful, but a very unnatural feeling of pressure as the needle's forced in, and shock as the mechanical hole-punching action takes the tissue sample. It's quick, but feels like it takes an eternity. The doctor that checked the lymph nodes in my armpit, said "yes, your glands are up too" and gave more anaesthetic, taking a biopsy from there too. The nurse swabbed away the blood and fluid, bandaged me up, and the doctor explained that she was fairly sure we were dealing with a breast cancer lump. She nipped out, and came back after I was dressed, explaining that she'd just been checking the MRI I'd had last November. She said that it was completely clear, and that there was nothing to have diagnosed at that time. She also explained that while I'd only noticed symptoms 3 weeks ago, the tumour will have been there a while longer, but had presented very quickly and aggressively, which was worrying. Again, the very chipper reassuring voice that told me "I'm concerned but not telling you." The nurse who'd been present the whole way through gave me an enormous hug, and handed me over to a breast care specialist nurse. The one (Nicky) I've been seeing since the start of my BRCA journey was on annual leave, so this other nurse sat me down and explained what happens next.

In a nutshell: go back next Thursday, collect biopsy results, have a full-body scan to see if it's spread to any other places, and hopefully pick up my chemo plan. The tumour's too big to operate at the moment, so she said it'll probably be a case of shrinking it with chemo, then operating. She said the word chemo softly as though it were bad news; all I could think was "PLEASE, CHEMO, ANYTHING, THROW IT ALL AT ME".

I'm finishing this post (and off to therapy - PHEW!!!!) with You Give Love A Bad Name. No real reason, other than I like it, and I don't have the thinking space to come up with a connected Jovi today:





WiP it real good...

'What's on your needles?!' I hear you bellow. 'More than you could shake a pretty big stick at', I tell you. I wanted to take a work-in-progress shot, so did a quick recce of the house, picking up projects I've thoughtfully left lying around, and stopped when I reached seven.



There are more in the boot of my car, down the side of the sofa, and under my desk at work… I haven't finished a project in ages, and am far too easily distracted. I'm hoping that this blog will make me focus and finish something once in a while. On my needles are:




1. Is This Love jumper, in black Shiny Happy Cotton - pattern and yarn from Wool and the Gang. How can you not knit a pattern named for a Whitesnake song?! Bonus: FRILLS.














2. Almanac cardigan by Martin Storey, in Rowan Creative Focus. So nice I made it twice! I originally made this in a green and pink colourway; this one's a flecked teal and magenta. It's tough to capture in a photo, but these are two of the most beautiful yarns I've worked with.












3. Little Boy Blue Baby Blanket by Marlaine DesChamps, in buttery-soft Malabrigo Aqua. This one's a present; there are six babies due this June, and this is blanket number two *reaches for Deep Heat*















4. Ruby by Martin Storey, in an amazingly bright and fluffy anonymous yarn I bought on holiday Buenos Aires.









5. #24 Bobble Pullover by Carla Scott in a combination of Bergere Alpaca and Rowan Kidsilk Haze. 

6. #24 Bobble Pullover by Carla Scott in a combination of Bergere Alpaca and Rowan Kidsilk Haze. Yep, you read that right. I loved this pattern so much that I began to knit it in another colourway (2016 Pantone anyone?!) before I'd even finished the first. 








7. This one...is a Christmas jumper (The Perfect Christmas Jumper by Susan Crawford) that I started four years ago. I've frogged, reknitted, frogged, reknitted ... but will not be beaten. One day, intarsia, I will conquer you. And then put you in a cupboard for 364 days of every year.














Where to begin?!?

Current vibe: In and Out of Love.





My First Bonj.


I don't have a picture of my first knit (a scarf in three shades of purple acrylic), so here's my first Bon Jovi single. Released in '95, with a live version of This Ain't A Love Song as the B-side, I bought this one weekend in HMV and never looked back. The video is pure 90s nostalgia, and reminds me of the seismic shift caused by starting secondary school.

I have no idea how this works.

Earlier this year, before I was diagnosed, I had a couple of tiny but eery experiences that I keep coming back to in light of this week'...