I can't quite believe it's been six months since I last posted or that this weekend marks my first year canciversary.

This is a long one; you might need a cup of tea or a long journey, and if you don't get to the end that's OK.

I feel quite guilty that I haven't checked in for so long, and I've had so many messages from people who obviously had been reading, were wondering what was going on and presumably waited as long as they could before unobtrusively checking in. I didn't mean to leave anyone hanging and there isn't just one reason that I haven't posted. Life got in the way, work got really busy, and although I still have a positive attitude and a cheerful disposition most of the time, sometimes this illness does get you down. The surgery and recovery were particularly hard. More on that later.

It probably makes sense to start with where I am now, and work back over key events in the last six months. This way, I'll also be able to maximise the shock factor 😀

• Although it is supposed to take 12-18 months to properly recover from the surgery I had (in June) about 4.5 months post-surgery I am living life more or less normally. The way I describe it is that if you saw me in the street and knew me but didn't know what had happened in the last 12 months you'd walk away with a nagging feeling that there might be something wrong with me but you couldn't put your finger on what. But if you walked past me in the street not knowing me, your head probably wouldn't even turn.
• I'm off all my regular pain medication. Last time I posted I was on quite a high dose of slow release painkiller (Targin) and I also took some Endone when I needed it. I gradually reduced the dose of Targin over the last few months. I hadn't needed it at all for weeks, but you can't just stop taking Oxycodone (if you haven't seen it, I recommend you watch the mini-series, Dopesick).
• The steroid is also gone from my life - and good riddance! The neurosurgeon told me ideally I'd be off the steroid before having spinal surgery and sometimes having a clear goal makes you get on with it. I've been to see my oncologist a few times since the op, and he still checks about the steroid. I think he's also in disbelief!!
• I drive - probably more than I ever used to even before I had cancer!!
• I'm still taking the immunotherapy tablets and they are keeping my cancer markers very low. 
• I have still been having the monthly injections for endocrine therapy, but there is either 1 or 0 to go. I have the operation to remove my ovaries booked for 6 December and I won't need endocrine therapy any more after that. I have the injections every four weeks and they are due next on 27 November. I'm hoping this will be close enough to the surgery that I won't have to bother. They are getting more difficult as time goes on - I have lumps that the nurse says are scar tissue: as a permanent reminder of every injection I've had; and more recently I have started to have some quite big bleeds. There is only so much of a pin cushion you can be.
• I'm just back from my first business trip (to NZ) in 18 months and for a few weeks now I've been going into the office once or twice a week, much to everyone's delight (including mine!) I fly to Melbourne on Thursday for a very brief stay, and I feel like I'm back to being in my best work shape.

So, yeah, I'm in quite a different place from six months ago. Look at the photos: the first one, where I'm eating the ice cream was on Mother's Day in May, the other was a couple of weeks ago.

I am very relieved to no longer look, at least facially, like a marshmallow. My face has thinned out as I've stopped the steroids and some of the medication. Although I think the monthly injections, particularly the Zoladex, make it hard for me to lose weight. I've lost some: I was 99kgs in hospital (🤯) and I'm down to about 80kgs now. But that's still a lot - too much - for me versus historically, and psychologically (and physically) it's challenging. 

I ache a lot. Not pins and needles, they went after the operation, but bone and muscle aches. If I sit for a while or when I sleep, lying in one spot, I get very stiff. I think this is what it feels like to get older (a lot older, I mean).  In September my oncologist tested me for early onset of arthritis which is pretty common with some of the medications I have taken. Luckily I can loosen up when I move around, but it means that I continue to prowl the house, every couple of hours at night.

I've still got my hair but my eyelashes have thinned. I didn't get any stretch marks when I had kids but now they are everywhere.

Cancer 😔

It's the psychological feelings that I'm still coming to terms with. I've never been this size (even after Warren was born, when I lost about 20kgs and cut all my hair off to reward myself). People must think I look a bit weird, because of my size coupled with the physical impacts of my neck surgery. Like I've said before, I don't think I'm a particularly vain person, but whenever I catch a glimpse of myself I can't help but wonder where I've gone to. 

But, as Rob continues to tell me, none of this really matters because I am still here. One year on, and I'm still breathing. In the last six months I joined a metastatic breast cancer support group online. In some ways it helps; in many more it doesn't. Breast cancer is one thing and, don't get me wrong, it is terrifying and horrific, and must be a true ordeal to go through. But you can (and many people do) fully recover from it. Since joining the MBC group I now fully understand what I'm dealing with: while there is every possibility that I'll get to have 'No evidence of active disease' - or NEAD - and hopefully for long periods of time, this is the best I can hope for. I won't ever be in remission.

Again as Rob still often tells me, even though it's MBC the source breast cancer I have (oestrogen positive) is still one of the easiest to control. So while I will have scans and blood tests for life, and I'll live every second of every minute of every hour and day with the thought of cancer always in  the back of my mind, I also know I stand as much chance as the next person of living for many, many years.

My CA15-3 cancer marker, the one that started at 120, got to a low of 25.8 on 22 August. As so much time has passed my readers probably won't remember, but a level of 24 is normal. Normal means I'm not producing any more potentially cancerous cells than someone who doesn't have cancer; that I'm responding to treatment. If I were to get to 0 that wouldn't mean all my cancer was gone. 0 is a misnomer. In this scenario. 0 is no better than 24. I last saw my oncologist at the end of September, when my mum and dad were visiting us for a holiday, and at that point my CA15-3 had gone back up to 30. But I'd been off the immunotherapy tablets for a short while, for reasons that I will get to.

The best-case scenario is my CA15-3 stays around about where it is (some people in my MBC group have levels in the thousands) and the PET scans won't light up like Las Vegas Boulevard.  I'll be on the immunotherapy tablets for as long as they continue to keep my cancer markers suppressed and my body can tolerate them, which might be 10 years or more, or it might only be a few more months. But if the Ribociclib ever stops working, there are different treatments to try. In MBC world, they call it 'lines of treatment'. I'm on my first (second, if you include radiation) and there are many, many more.

At my oncologist appointment in September, Dr A told my parents that my response to treatment has been really good, and he seemed very impressed (almost surprised) at how I'm managing without the medication.

Visitors from home

I'm not sure if it was a coincidence of timing but I have always thought that when I really started to recover from the spinal surgery was when my parents got here from England in September.

I had barely driven since June and not only did I want to do more but to get us around I really had to. I think it was similar to how dangling the carrot of surgery set me free from the steroid. That makes it sound like surgery was something I wanted to have: it would be more accurate to make the surgery the stick - but I'm sure you get the idea.

Of course having my parents here also gave me a huge psychological boost. It was the first time we had seen each other in four years and being bookended by COVID-19 and cancer felt much longer. There are all sorts of reasons Rob and I moved to Australia (and many more outcomes that make us happy we did - including cancer treatments here), and this is mostly a dialogue for outside of this journal. But it always has been a difficult choice to make to live so far away from our family; not just my side but Rob's side as well. 

We had the best few weeks with my folks. My dad found his new favourite TV programme: Farmer Wants a Wife. Anyone who knows him, please ask him about it. He'd be delighted to regale you in detail, episode by episode. It's great that he found something on TV to watch as it offset the weather - it was really terrible; cold and wet. I think it was warmer (it was definitely drier) in England 🙄

It is a great thing for the world (including us!) that travel is starting up again, but it's really so much more difficult than it used to be. Thankfully my parents' luggage got here as they did, on the same flight and everything; mine, bound for Auckland from Sydney, failed a scanner to be put into the hold twice. I got to Auckland and my case did not.

Well, it did eventually. On day two of a four-day stay, when it was still in Sydney, my husband told baggage control to leave my case for me to collect on my way back. The next day I received a call and email from a delighted man at Queenstown Airport who was putting my case on the next flight to Auckland. I was supposed to be reunited with it at the hotel that night. By day four it still hadn't arrived; luckily I checked at Auckland baggage control on route back to Sydney. 

Air New Zealand will be reimbursing me for my shopping. Cancer takes a lot of the fun out of shopping.

The irony is that for many, many years I have carried a spare set of clothes in my hand luggage if ever I put a bag in the hold. Not this time 🙄

I fly to Melbourne on Thursday. Hand luggage only.

Finally caught by the bug

About three weeks before my parents arrived, Rob and Miss L went to Qudos Bank Arena to see Kiss on their (now apparently not) last ever world tour. Kiss has been Miss L's favourite band for as long as I remember and it was a real treat for her to see them live.

They brought back lots of Kiss paraphernalia, and COVID-19.

They both got sick within a few days and within a few days of them going down, so did I. 

It wasn't pleasant. Obviously with a severely compromised immune system I got straight on the phone to organise antivirals, but they didn't help. A day later the doctor put me on steroids (again). Although I abhor steroids for reasons that are well known, for me they really do the trick. Within about three hours I was out of the bed I'd been in since I'd tested positive, and in another day or two I felt much, much better.

Even though it knocked me for six, I agree with what several others have told me about COVID: that the thought of getting it was far worse than actually getting it turned out to be. I think it might have been worse if I'd got one of the earlier strains, so lucky for me I didn't.

I was midway through my fifth cycle of Ribociclib when I caught COVID and so with the antivirals and steroids I was instructed to stop (as it weakens the immune system). Hence the reason for the slight increase to 30 on the CA15-3 test I referenced earlier on.

Rob and Miss L were both left unscathed by the COVID experience. Miss L's had colds and Rob a flu this year that both say were far worse.

Neurosurgery

So finally to where the story finished on my last journal entry: my neurosurgery. I was due to go into hospital on Tuesday 31 May but I caught a cold and so it was postponed for a week. Then the surgeon caught COVID. So, later than planned, on Friday 10 June, Rob and the girls drove me to hospital for the first of two surgeries.

It had been a long time since I'd had a general anesthetic and what with my neck being very fragile (and still being kept on my shoulders with a neck brace) I was pretty freaked out about what might be to come. The girls had the day off school to take me in to hospital and saying goodbye to them was awful. They went to the movies to watch a film that they probably didn't enjoy very much.

I was first on the list for my neurosurgeon, Dr P, that day, so I didn't have to wait very long. The first surgery was a long one - about five hours - but I don't remember anything about it being particularly difficult. I was under the impression that the relaxant I had in the holding bay before the main anesthetic had knocked me out cold, but by all accounts I was lucid and chatting away while they really put me under.

The next thing I knew I was in recovery. Although it was long, it was by far the easiest of the two surgeries immediately afterwards. I had some butterfly stitches on the front of my neck and I think they gave me some relatively standard painkillers. 

Hospital is odd, in the sense that time either flies by or it moves at a snail's pace. I'm not quite sure where most of that first day went, unless my surgery took longer than planned, but I was on the high dependency ward by about 7pm. Each ward in the hospital only has four beds, and my three neighbours were in high dependency for a reason. One, opposite me, kept pulling out her drain. The lady next to me had cancer and very little time to live (in fact, she was moved to the hospice while I was still in the hospital - I ended up chatting quite a lot with her family) while the lady diagonally opposite became my first hospital 'friend'. She'd had a back surgery, under the same surgeon as me.

I'd been looking forward (sort of) to being forced into resting, reading, knitting and binging TV. But I found it so awful being away from home - so lonely - that I couldn't concentrate on much at all. I fell asleep a lot. In the first few days after both operations I had wires everywhere, making doing things challenging. The food was quite bad, made a lot worse by my feelings of nerves and unease, such that I barely ate a thing. Rob brought me in a good meal once he realised, otherwise I don't think I'd have eaten anything at all.

Rob brought the girls to visit on day two to my first bed: 24. The hospital still had quite strict rules around COVID-19, the main one (that I didn't realise until it was too late) being that no-one under 12 was allowed to visit. I was too preoccupied with working out the best configuration for Rob and all the kids to come and see me, seeing as I thought the only restriction was two people per bed.

I was already covered in wires and I was having an antibiotics infusion (the second of about 40 I had of those) when Rob and the girls arrived, and so to be yelled at by the nurse that under 12s weren't allowed was just about the last straw for me and for Miss F. Nursey agreed to let them stay for those visiting hours but what with my wires, the woman opposite with her drain and the poor lady and her family next door it was all too much for the kids and they went home.

On the second day after the first surgery, I was really struggling to get any food down and so the speech pathologist came to see me. I had been warned that this might happen - it was impossible to get anything (even water) down my very swollen throat from surgery. The speech pathologist made me drink thick water. Honestly, it sounds like I'm making it up but it was the most disgusting thing I've ever had. Water but with a thick, oily consistency. If there was one way to get me back to drinking normal water...

While my throat recovered they put me on a diet of soft food, so the already terrible hospital food experience became even worse. I wasn't eating, my stomach was so bad. I actually messed the bed one night. It was bright yellow - just like baby's poo.

By day three, my throat was less sore and I was up and walking about. I was showering, with the help of a nurse. I had one more wire to lose before I would finally be free. Next to the incision on the front of my neck, that was still covered with the butterfly stitches, was a surgical drain. I still had to wear the neck brace after the surgery so having the drain out was a bit of a mission. I had to have a physio remove the brace and hold my head so it didn't move, while I was lying flat on the bed, while the nurse removed my drain. It was so incredibly painful as he yanked it out so much so that I worried about it for the next surgery from that moment on.

The nurse who removed my drain after surgery number two couldn't work out why I was so worried about it. Her removal wasn't sore at all. It turns out that nurse number one hadn't deflated it first.

That night I went to sleep and I was woken an hour later by some new nurses packing my things into my case and putting it onto my bed. I was just about to leave the first of five rooms I'd call home in the course of being in hospital.

This move was the best for my headspace at the time, although it probably wasn't my 'favourite' bed of my hospital stay. I was taken to room 7, which was a single room, with my own bathroom. I was there from Sunday night to Thursday morning and although I'm certain that the right time and place made me get my own room, a piece of me still wonders if it was the hospital rewarding me for my long stay and compensating me for what was to come.

Someone from my surgeon's team (comprised of registrars and interns) would come and see me every morning in their rounds. My usual visitor was [first name] M, one of Dr P's registrars, and I have to say I really missed his daily visits when I got home. Rob and I had first met him in my pre-operation appointment, and I found him nice but, in a typical young doctor kind of way, not particularly warm. He first came to see me the morning after operation one and I was so glad to see a familiar face. 

Some days the doctors turned up in a huddle; three or four of them, wheeling around their laptops, a blur of questions, checks, prods and haste. They cannularised me when the nurses couldn't find a vein. That's a whole story for another day. I had so many needles in hospital I lost count, and I almost had to have a cannular in my foot because they just couldn't access to any veins in my arms. 

The closer I got to Thursday, the more worried I was about operation number two. I woke early to shower, and the nurses came in to move me back to high dependency. Beds in the high dependency unit were a rare commodity so while there was a spot I had to take it.

As it was, I was fifth on the operating list and didn't get into surgery that day.

I was still in HDU, though, and spent the night watching the nurses dealing with the neurosurgery ward's sickest patients. The one opposite me - in a sealed room - had COVID. Everything about it was awful. It was hot. The patient had no fresh air. Every time they needed something (bed pan, water, food, company), the nurses would wrestle themselves into a hazmat suit, then take it off and chuck it in the bin on the way out. 

The lady next to me. thin as a rake, spent the night trying to get out of bed and screaming for her sister. She was on a nose feeding tube. I was convinced she was anorexic, but it didn't make sense that she was on a neurosurgery ward. It turned out that she'd had her second stroke in about six months. She was thin, yes, but that was just her genetics.

I was so pleased to see her out of HDU in the last ward before I came home. She was opposite me. We chatted a lot. She had months of hospital ahead of her; she was headed for a rehabilitation centre. She was very sad the night I was wheeled out to go to a half-way house room on a different ward, ahead of going home the next day. 

Friday 17th turned out to be my second surgery day. I was third on the list but didn't go down to surgery until about 1pm. Rob was there visiting me when they came up to take me. 

The porter took me down and the nurse that welcomed me was so pleased to see me again. But I didn't recognise her at all! I was obviously too embarrassed to mention it, so I just played along. 

It was about 1.20pm when I was given the relaxant, but it didn't work as well as the first time because I remember being in the operating theatre. The time on the digital clock said 1.27pm. This operation was to last 2-3 hours.

The next thing I knew I was in the recovery bay. I looked up at the clock and it was close to 8pm. I didn't have a clue what had happened. Poor Rob, expecting the same call he received from Dr P after my first surgery at the anticipated time, ended up calling the ward a few times to find out if I was out of surgery. They didn't know either.

Eventually Rob got the call; I was absolutely fine but I gave the anesthetists some trouble, such that they couldn't start the operation for a good couple of hours. They couldn't get me "under" sufficiently to where they needed me to be.

Even though I don't remember a thing, and one of the questions I'd asked Dr P in the run up to the operation was if it's possible to wake up during surgery (the short answer was no, not nowadays), I must admit, the thought of this still haunts me. 

It was to be the first night of two of excruciating pain. M [first name] had told me in his morning visit a few mornings earlier that operation two might be more painful than operation one. He wasn't wrong. 

I was promised a magic button that I'd press and painkillers would instantly flood me. I pressed the button but nothing changed. I'd been on a high dose of Oxycodone for months and so everyone was convinced I'd built up a strong resistance.

The 'button' is attached to a square box that houses a cylinder, which is attached to a pole. The substance is administered intravenously (cue more cannulas and poles and wires to wheel around with me). I maxed out three days' supply of Oxycodone in the first 18 hours. Still, it wasn't working.

Then I got a second cylinder (more poles and wires, more needles and cannulas), this time filled with Ketamine. I must have built up some kind of tolerance as this didn't really work either. I was still trying with the other button.

On the second evening after my second operation I noticed that my bed was really wet, on the side of the arm with the button attached to it. Then, I saw the skin on my arm was all puffy. I asked the nurse, who pretty quickly realised the button hadn't been cannularised properly - so the Oxycodone was going into my arm and pooling under my skin, but not getting into my veins.

Finally, some relief!

The rest of the stay was a blur of blood tests, CT and MRI scans, and people checking my wounds every day. The one at the front - it was about a 3cm incision in the front of my neck, slightly to the right of my throat - was doing well. 

The second operation was shorter but more challenging and trickier. While the scar at the front is hidden in the crease of my neck, at the back the wound was closed by staples, 13 of them over about 10cms of skin. M and team, including my surgeon for the second operation, Dr M (also a registrar but not to be confused with M [first name], the other registrar), continued the ritual of checking on me every morning. 

The best thing about the second operation was that I came out of it without the neck brace. My doctors insisted I keep it, for prosperity's sake, so it's here at home, keeping my radiation mask company, but I didn't have to wear it any more. The most difficult thing about that was it made moving harder and trying to heal a wound on your back while lying on it isn't ideal.

Unsurprisingly it look longer for the wound to heal than I had hoped. It really fought me. I was nine days in the hospital recovering from the second operation. I had IV antibiotics every nine hours, it didn't matter what time of day it was. More needles.

Thankfully I had my hospital 'friends' and the amazing nurses to keep my spirits up. I am a homing pigeon anyway and I was desperate to have my own things around me. On the 11th day I finally went home, after having a local anesthetic, 13 staples out and two stitches in. More needles.

Dr P, my neurosurgeon, came to see me on the ward a few days before I left. His medical team had been sending him photos of the wound and I think knowing how much I wanted to go home he wanted to come and see it for himself. According to the nurse in my room on the shift at the time, it was the first time in about 18 months Dr P had been on the ward. 

I've said before what a lovely man he is and he didn't disappoint that day. Rob was there for visiting hours, and Dr P explained why I couldn't go home yet: if the wound got infected I'd be back on the operating table. He also told me not to be surprised if I suffered a bit with depression when I got home. I must admit, I didn't believe him - I thought I'd be ecstatic to be home (and I was!) after how I felt in hospital.

Back to that thread in a second. I have one more anecdote to share first.

After I'd finished with the button, I had daily meds in tablet form, various different things - I can't even really remember what they all were. But every time the nurse came to administer them I'd have to give my full name and date of birth. Avid readers of my blog will remember the trouble I had with this during radiation. It was no different in hospital 😅

I was so pleased to be home, really - I can't explain quite how much. So it was odd that after a few days I started to feel really sad and sorry for myself. Dr P was right. I wouldn't really call it depression - more of a blue phase. So while I really wanted to journal back then, I just couldn't do it.

I still couldn't read, either. So I sat for three weeks watching the trashiest of TV, not really speaking to anyone outside of my house.

Then one day I gave myself a good talking to, I went back to work, and the rest, as they say, is history.

After all that you're probably wondering about the surgeries I had 🤣🤣🤣🤣

• Part one was a C5 and C6 corpectomy with a C4-C7 anterior column reconstruction and fusion.
• Part two was a C5 and C6 decompression and a C4-C7 posterolateral fusion.

If you have a strong constitution or are very interested, there are plenty of videos on the internet of these two operations. Google at will (just don't look up cancer statistics while you're there).

In layman's terms, though, I had the soft bone removed, a 15x12mm cage inserted, titanium plates on the front and back at four levels (C4-7) secured with screws, a tissue donation (like an organ donation) and a bone graft. 

I went back to the hospital about a week later to have my stitches removed, and we saw Dr P about a month after that. He was happy with my progress (and not at all surprised about my blue days). He told me he'd see me again in six months, which will be January 2023, and he sent me for a CT scan at the three-month mark, in October. He told me I'd only hear from him after this scan if there was something to discuss. 

So that's it. I survived a gigantic surgery, and Dr P's silence means I'm recovering. The brain is a funny thing: just like they say about childbirth, even though I know it was awful I have  forgotten the real ordeal of surgery. Would I do it again? Of course I would.

Which is good, because in three weeks time I am scheduled for the oophorectomy. That's just an overnight stay and home the next day. Assuming the blues stay away, I'll journal again after that.

There are currently two people I know, both of whom I am pretty sure will read this, that are having their own, recently diagnosed, battles with cancer. I've dealt with my hand the way that worked for me but by no means is my way the right way for anyone else. To those people, or to anyone else who knows me in real life, please get in touch if you ever want to talk - about cancer or anything else.

It's been a year - not one I'd predict or that I'd ever wish for. But I'm still here.

🌹