4 February 2024
It feels like it’s been years (or at least a year) between updates! Ha, an update starting with a ~classic new years~ bad joke – it can really only go up from here.
Medical Update
I will jump straight into the medical update – allow those not interested in my ramblings, a chance to get in quick and then leave (for those really not interested, you can just scan for the bold text). I was back at KHCC (King Hussein Cancer Centre*) last week – blood tests, oncologist appointment and my fourth IV infusion. All is looking good with my bloods – the neutrophil levels (type of white blood cells that are a marker of my immune system levels [I cringe to think what those in the medical field are thinking about my explanations]) are the best they’ve been for a few months – so that is awesome. I hope that means I might finally, finally getting used to the medication.
*There have been many a joke around KHCC and what it means. My favourite to date is probably Katherine Harris’ Cancer Cult. I had suggested early on to name the Whatsapp Community that. I think just maybe it’s time.
The appointment with my oncologist went well. My new theory is that she did not love the special treatment she was asked to give me at the start (she was asked to see me outside of her normal clinic hours – not once but twice [second time when Sam and Daniel were in town]). I remember in one of those appointments her telling me at her clinic I would be just like any other patient and somehow, I think she made an extra special effort to show me by treating me ~worse than any other patient~ like any other patient. Maybe she finally realised that I didn’t expected to be treated differently and now seems to be interested in actually treating me (it could also be that she half expected Sam to be treating me so just gave a half-arsed attempt but has now realised that I am also relying on her as my doctor… who knows!). We actually talked through some side effects – aside from the regular I too often complain about, more recently I have being having quite a lot of joint pain. She will check my vitamin D levels next blood test – in case they are low – but could very well likely be a side effect of the hormones (apparently very common). I also told her about some persistent pain in my right back (me telling her may or may not have been a direct result of being highly encouraged by Sam to share this information with her [and if it was, she asked me to pass on her thanks to him for the encouragement]). We are not worried by it but will do an extra scan (bone scan) in March to just double check there’s nothing to worry about. So yep, that’s about it. 19 March is the big scan day – I will do another CT, another MRI and this time, a bone scan.
Finally in medical news, I had my fourth IV infusion (bone strengthening stuff). It seemed to go well. I felt a bit rough after the infusion but manageable. And definitely not bad enough to let me skip out on the work retreat the same day 🙂
So that is about it for medical stuff. No major updates. So for those here just for the medical stuff – that’s it! Feel free to stop reading here.
Non-medical update 1 of 2 😳🫣
This is actually my third attempt at writing an update. I think I struggled to find my hook this update – no fun quotes, no scan results, no epic 90 music playlists (sorry, I know there are some of you just tuning for another 90s playlist).
I did consider doing a run down – or a highlights reel – of 2023. The year that was or at least the year that will forever be a turning point in probably not only my life by my kids’ lives. However, it really came down to me being so fucking lucky for everyone here in this community and for the different forms of unwavering support you have all given me over the year (actually, the past few years). But needless to, cannot thank you all enough for the support. In connection with another side story* and four other tattoos, I got unwavering tattooed on my arm – to remind myself of the unwavering support that I have around me, even on the shitty days (in that I mean the days when I’m shitty) – there are people willing to be around me or talk to me – amazing! Thank you.
*Long story short, back in early 2023 – pre-cancer, post-divorce – I commented to Catherine about how wrong I had been in my 2022 end of year/2023 start of year Instagram post (something around feeling optimistic) given soon after I separated and then divorced. Her response, lots of love and some boosting words including the word unwavering. It has since been a word that has a lot of meaning for us and to me. So much so it is now tattooed on my arm!
Though I still found myself at a loss about what to write. But then two things happened the last week, which – when also thinking about my trip back to Australia over Xmas and my considerations over January about how I saw 2024 – made me start to think that I am slowly learning how to live with the new normality that is living with cancer (that, or I’m just getting even better at the whole denial side of things!?!). And I think that is something awesomely positive to write about.
First, I guess was going home for Xmas. I think I spoke to a few people about how nervous I was to be going home – how I was sure it was going to be an emotional rollercoaster. Seeing so many people for the first time since the diagnosis. It was – in someways an emotional rollercoaster – but not really all that related to me having cancer. Because, life goes on for everyone. Everyone is dealing with their own stuff – some exceptionally amazing things, some good things, some exceptionally bad things. And I came home and also experienced some of those things with family and friends – some of it exceptionally amazing, some of it good and some of it bad. And yes, some also including dealing with my shitty cancer stuff but it was not the be-all and end-all of everything. All in all, for a few moments during the trip, I could almost forget that I had cancer and just be someone’s daughter, sister, aunty, friend etc… And that was cool. Nothing stops because of my diagnosis. I knew that but last time I realised that, I was annoyed. I remember being just a little pissed that things didn’t stop. This time, I was much more okay with it, good even.
Then on Wednesday (last week), I sat in the chemo ward having my IV infusion. The lady sitting next to me, she was not doing well. I believe she was having chemo and was suffering – likely both from cancer and the chemo. I did have a moment of being overwhelmed with the fear of what could be in my future but it was brief. While feeling extremely sorry for the lady sitting next to me, I was also overwhelming grateful that I have a cancer that responds to hormone therapy and I can take medication that more-or-less lets me live a normal life. I had a massive surge of optimism (yep, I do still have some of that optimism back from the start of 2023) that all my energy needed to go into not being scared about what happens after this medication stops working and not being angry about not being able to have chemo and get rid of it* but into believing this medication will work beyond the three year average and maybe even beyond the magical six years that everyone references as the goal. I think I had a surge of this optimism after the first scan in August but definitely lost a bit of that with the end of November scan. It’s nice to have it back.
*Of course it sucks that I can’t have chemo and get rid of it but I can’t. It is what it is. Holding to much anger of that is not going to help me (not saying I won’t have moments in the future – I think that is life – but I’m trying to let that go).
(non-medical updates continued but also hopefully last post for a couple of months)
Then today, World Cancer Day, I got an email from Hana’s teacher*, after they had decorated cookies that represented good cells and bad cells and overall had a brilliant day embracing World Cancer Day, Hana felt a bit sad and didn’t want to go out at lunch. She stayed inside and asked her teacher, what would happen when the current medication stops working. Hana’s teacher didn’t want to say anything contrary to what I have been saying so told Hana to talk to me. I got an email as a heads up and it did not break me (I may be breaking just a little bit now but it’s late, I’m tired). I got home from work, sat down for dinner and had a brilliant conversation with Hana and Leo about what might happen when the medication stops working. A hard conversation but we were able to have it, normally. And it’s an ongoing conversation that we can continue to have. I definitely think I’m getting better at this.
*A wonderful wonderful teacher, who reached out to me a few weeks ago to warn me that World Cancer Day was coming. She asked me if I wanted her to 1. ignore the day and have the whole class wear the uniform despite it being a uniform-free day, 2. tread carefully and talk about it with the class but minimally, or 3. embrace it fully and use it to help feed into the science lesson about human bodies and good cells and bad cells. Whatever I thought was best for Hana – what an amazing person and teacher. (We went with option 3.)
Throughout all of these musings, short moments of almost forgetting I had cancer and the hit-me-in-the-face-moments that I do have cancer, I have been coping. And coping much better than I think I had in the past. Maybe, just maybe, a sign that I am getting better at living with my new normal.
I did also spend some time reflecting on 2023 and considering how 2024 was going to be. I want to approach 2024 with what I learnt from the last nine months: 1. life is literally too short and that I need to embrace what makes me happy, what makes my children happy. 2. I should definitely say yes to more things (but also say no when I want to say no). 3. I really need to not sweat the little things (I’m still learning on this one). 4. that I should be me – unashamedly and unapologetically* – say what I think or what I feel and do what I want (again, takes some work but I’m trying). My few attempts at these things in 2023 (and even already in 2024), were overwhelming positive – wow, I had some pretty awesome experiences last year – and so far, no regrets. So with that in mind, I can’t wait for 2024!
*Ahahaha who am I kidding – not sure I will ever be unapologetic. Sorry 🙂
Anyway on that ridiculous rainbows-flowers-unicorns and over-the-top note*, signing off for this update. I’ll be in touch around 20-21 March, hopefully with good scan results. Love to you all. Fuck Cancer
*In my defence, I think needed. The last few updates have been a bit angsty and not full of optimism/hope – and if they did not come across that way, that is how I have been feeling. Nice to be able to write one that is on a bit of a lighter, happier note.
25 March 2024
Hi to everyone. I wanted to just share a quick update (I actually think for the first time I’ve written that, it will actually be true).
I lost a friend to cancer last week and it just feels massively too self-indulgent to write a long update. For those in the group feeling the same loss, sending lots love. A stark and horrific reminder that life is really too short and we need to make the most of every day – take the happiness and love when and how we can find it.
I did want to share though that I had my scans last week. A long five-six day wait to get results, where I really did think the worst, I got my results yesterday and they were good. No growth, no new metastasis. No apparent shrinking but as we learnt last time, this is to be expected and this is overall fucking good news. Treatment is working and while this situation is shit, I’m really lucky.
Lots of love to everyone. And fuck cancer 💜💪🏻
6 May 2024
Now I think I can write an update. I tried last week – 3 to 4 times – but I was clearly* not in the right headspace. For those reading for the medical updates – I have none. You can stop reading here 🙂 for those that read for other purposes, I will try to keep it short.
*Each time it ended after one or two paragraphs with me in tears or just went dark (I do try to be honest and not hide the dark moments in these updates but I learnt that I do have a limit [amazingly, I do have some limits to my oversharing]).
A year ago today, I got my PET scan results. It feels less of an ominous anniversary than 1 May – when I first learnt that it was likely that I would have breast cancer. Last week, 1 May in particular, was hard. I think I mourned the few days where I was shocked but determined that I would beat it and in a year would look back and say fuck cancer. I mourned the holiday I had promised the kids to celebrate beating cancer. Yeah, last week was hard. But how lucky I am – I was surrounded by love. Those who took me to celebrate life, Labour Day and friends with baked feta and champagne (and wine and…). Who were comfortable with me crying intermittently through the glasses. Those who sent messages of love and support. Those who knew to give me space when I needed it and most importantly helped me spend more of the day laughing (sometimes crying as I laughed but that’s okay). And those who spoke to me on the phone as I cried and told them I didn’t want this anymore*. And amazingly, I did take the kids away – we went camping (not quite the celebration I had envisioned – in that, those who know me know I not much of a camper) but amazing that I am healthy enough – with cancer – to go camping and climb a mountain. That is pretty damn cool.
*Obviously have never wanted it but probably more of just being tired of having to deal with it and just not wanting to deal with it.
So today – a year on from being told that I had five to ten years – l choose to be fucking grateful that the first of those years was, with the many lows, amazing. I thought to send a compilation of photos from the year but just in the first few months I had too many awesome photos and memories to share. What a fucking year it was. I’m going to share a few that represent the year – one from a few weeks ago getting my IV infusion (the medical), one from 1 May (drinking, crying and smiling) and one from one of the hikes on the weekend. I am doing well.
What is missing from the photos are the kids, family and friends that keep me going*. I am doing well – largely and probably only – because of everyone here that surrounds me constantly with love and support. The support ranges from phone calls, hugs, messages, positivity (and allowing me the negativity when it’s there), laughter, encouraging the summer renaissance last year, egging on my good (and bad) decisions and the list goes on. So thank you to everyone – really, thank you.
*I could not find just one photo to represent all of you. There are too many great photos from here in Amman to Geneva to Chicago/New York to Cyprus to Australia and the everywhere in between! But know you are there 💜
Hana told me the other day that I was a “cancer survivor”. I explained to her what that meant (I.e., that I had beaten it) but she just said, yeah, but you’re surviving it – you’re living with it. Eh, when did she become smarter than me (yes, Mum, I know – the day she was born). So, surviving with cancer it is! And today, we reset. I choose to continue aiming for five to ten (and beyond even).
Lots of love to you all. Fuck cancer 💜💪🏻
17 July 2024
I’m convinced that this will be my best update ever (big start to an update) – I’m using my new reading glasses* for the first time and am optimistic that since I can actually read the screen, it will exponentially improve my writing 🙂 (please do not feel free to tell me that I’m wrong, I only want confirmation of my theory).
*I am ignoring that fact that I have now become one of those people (i.e., old) that needs glasses to read and looking at the positive that I no longer need the bold text setting on my phone.
Aside from the bold claim in the introduction, I will keep this message strictly related to medical news (but to be fair, the fact that I now need glasses to read could be classified as medical news).
I had my four monthly scan on Sunday* and got the unofficial results yesterday, the official results today with my oncologist. Quoting her, the scan shows no change. For those that need a reminder (fully acknowledge that I am one of those that needs the reminder), this is good news – this is what we want 14 months in. The cancer is not growing. In other medical news, I can now drop my monthly blood tests to just one every two months – my blood work this month was the best it has been (I have equated this to being that it was taken after a week holiday [not sure I have medical evidentiary thresholds met but once again, not looking for anything other than confirmation of my theory] and that I need to ensure that I take more breaks). And in even bigger news, my oncologist is pregnant – so I’ll see her once more in September and then will have a new doctor. Unclear today if that will push me to look for a new oncologist outside of KHCC (King Hussein Cancer Centre) or stay and see what the new one will be like.
*The scan was largely uneventful, aside from the small interaction I had with one of the nurses when she clocked my eye roll and annoyance at being asked if I was married. Before I answered, she said I’m sorry but I have to ask, to which I responded, no you don’t, you need to ask me if I am pregnant, not if I am married. Point was not really taken but somehow made me feel better making it.
Anyway… that it’s on the medical front. Next round of scans will be November and we stay on course until then.
With much love to everyone and Fuck Cancer 💜💪🏻
**Just a quick postscript – I had all the good intentions to write a second longer less-medical-more-how-I’m-managing update (I did genuinely try [15 complete or partially complete very disjointed paragraphs of trying]), but, right now I’m finding that hard. One, because I carry an assumption that a year on, most of us (including myself in the us) are probably a bit sick of reading/hearing about it. And second, because it’s not so easy to write and talk about when things are not going quite as well as you would want and the last few months, let’s just say, I have not been going quite as well as I would want – coping/managing has been hard (in relation to this, I have probably been less open to talking to some of you – for some, that might be a relief, for others, don’t give up on me – keep trying to call or message). I will though continue trying to write about it and if I manage to actually find the right words, I will share. Thanks to everyone for their understanding^💜
^I really wanted to actually say sorry for my distance or less-than-stellar moods but trying to say sorry less so going for the thank you for dealing with me (but yes, I am also sorry) 🙂
15 September 2024
TL;DR: Been awhile since I have felt the need to add one of these in. Physical health: Everything continues to go along. Mental health: I think better than last time I wrote. Yes, better. Highlights: Spoiler alert – a new doctor with great couches. Two messages: Message 1: Medical Updates – you can stop reading if you only want the medical. Message 2: other updates.
Message 1: (1/2) Medical updates:
Everything continues to go along. My last bloodwork was good and all indications are that the hormone therapy continues to work. The joint pain (side effect of the hormones) has progressively been getting worse. My former doctor has been reluctant to do or advise much other than stronger pain killers. But I guess in the five minutes she has for me every two months, it’s probably hard to assess the actual impact it’s having on my day-to-day life.
But yes, not quite official at this moment* but writing former was not a mistake and not just because she’s off on maternity leave soon. After thinking and talking (sorry everyone who has had to listen me talk about it) about going to see a private oncologist for what seems like a very long time (probably even longer for those aforementioned people I just apologised to), I finally did it! And exclamation mark totally warranted at the end of that statement, it was great – fantastic even (if you can say seeing a private oncologist is fantastic).
*Not quite official just yet because in the coming days, I will write to my oncologist and let her know that I will move my treatment to a different doctor at a different hospital – something that I am looking forward to doing.
I went into the appointment last week still unsure if I would actually change doctors/hospitals; my mind was made almost the minute I walked in and saw the couches he had – swanky and comfortable (which I know because I spent almost 50 mins sitting in one of them – yes, you read that correctly – 50 minutes – I think cumulatively more time than I ever saw the previous doctor). I could probably write pages about all the great things I took away from my first meeting with my new oncologist. But I’m not sure that would make for riveting reading. Instead, I’ll just and just give you the top three highlights (aside from the awesome couches). Third from top, he actually recommended that I have a psychologist or psychiatrist and immediately wrote a referral for me (for those that don’t remember, this was a constant struggle I had with my former doctor). He immediately suggested changing my hormone to see if a different one (same efficacy) might lessen the joint pain (something that Sam has been suggesting for some months, but see above, has not got traction with former doctor). And most importantly (apart from the swanky couches – they were really that good), he made it very clear to me that he believed I should not be reorganising and planning my life around my treatment but rather it can be adapted around my life (i.e., getting more than one month medication at a time, not having fixed times for scans and appointments) and that I was the decision maker in all of this – as he said, he can recommend but I get to make the decisions. The feeling of having some agency in all of this is amazing and now that I have that feeling, I realise how much it was missing.
Message 1: (2/2) Medical Updates:
I’m sure there will still be the odd hiccup and challenges but overall I’m extremely optimistic about the change. In terms of medical treatment, no big differences. The new doctor has proposed switching from the three-monthly IV infusion (to strengthen my bones) to an injection. He suggests that there are some trials that indicate that the injection has slightly better results and it would be quicker. I will hopefully change my hormone next month. And instead of three scans in November (CT scan, MRI and a bone scan), he has proposed doing a PET scan (I understand he will scan less and if he thinks we need a scan will do a PET scan as it shows exactly what we need to see, as opposed to the other scans). The originally proposed scans were for the first week of November but the doctor is very happy for me to do them mid-October.* So the second week of October will likely be a big week – new medication and a scan. So I guess mid-October will be my next update with medical news. Hoping that I’m still extra positive about the new doctor – it’s yet to be seen (because I actually don’t remember who said what to me^ when I went through scans at this hospital at the start [oh yes, for those that don’t know, I’m going back to the same hospital where I was initially diagnosed – Abdali Hospital]) if I will be asked if I’m married prior to the scan rather than if I could be pregnant. And really the only question that remains unanswered is whether the comfort of the swanky couches (I promise it’s the last time I mention them) will win out over my annoyance over questions about my marital status that actually have nothing to do with whether or not I could be pregnant (the lack of uterus and ovaries are more to the point on that front). Watch this space – I will let you know.
*Last week, the school shared that Hana’s only overnight camp for the year was 14-16 October and we were meant to be leaving for Australia on 14 October. When I looked to change my flights, I couldn’t because… I had to be back for the scans. So now, we can leave a little later and stay a little longer in Australia. So Hana is not being impacted by my scans and gets to go on her camp and bonus for us, we will now stay an extra few days back home (heading back to Amman on 7 November). Already seeing benefits of changing doctors.
^Not entirely true, I do remember getting injected with some radioactive material before the PET scan at Abdali and me asking what I felt was an appropriate (or if not appropriate, slightly funny) question of will I get superhuman powers now and not even getting a hint of smile from the nurse. I’ll work on my delivery for October.
Maybe not pages, but seems I have written quite extensively about the new doctor. As you can probably infer, I’m pretty excited about it and overall, hopeful that I can start a new chapter of not crying each time I’m having appointments, scans or getting medication. A low but important bar.
That’s it for medical stuff. Sorry for the length and to those that read predominately for medical news. You can check out here. And I’ll be back in touch in October.
Message 2 (1/2): Other Updates:
In other news, last update I shared that things hadn’t been going quite as well I had wanted in terms of how I’m coping with things. I’m still finding it hard to write around those feelings but I am doing better. Acknowledging that I wasn’t doing as okay as I wanted was the first step and acknowledging that I wasn’t really talking about it anymore (it = the fact that I have cancer) was also a big step (thanks to those that helped me there). My theory is that earlier this year, I decided that it was time to start living that normal life that everyone keeps referring to. So I pushed all the feelings and thoughts down and tried to do the normal life living. And I think, I probably went into a bit denial about what was going on; it was pretty good – I didn’t mind it there. The year anniversary in May made the state of denial no longer possible for me, so I skipped over to pretending that everything was fine (picture now the gif of the dog saying “it’s fine” as the house is burning around him – pretty apt description of the next few months for me). It was not sustainable and I ~don’t think~ know it didn’t bring out the best in me and probably wasn’t amazing fun for those around me. Thank you to everyone who put up with me.
Since the last update, I have been trying to find a better balance of some normality but without the denial and without the pretence that everything is fine. Not sure I have found the winning formula but definitely doing better. I’ve been talking about it a bit more, not all the time, but more. Pleased to say that we’ve also started joking about it again – of course when it is really only so inappropriate that it’s funny.* And I’ve just made the connection that maybe me being more at ease or more willing to talk about it is also probably helping Hana to talk about it (Leo, not quite there yet). While I haven’t said – let’s talk about me having cancer – but I guess she senses something. The last few weeks, Hana has asked questions or started talking about it and they have been really hard but also really healthy conversations – something that hasn’t always come so easily for either of us. A few times it has just been questions but a couple of times her expressing some of her fears around what happens next and I think it can only be good that we can have those conversations.
*Hard to pick a favourite, but could be when I made a comment about one of my children being the death of me and the response being, no that will probably be the cancer.
On the kids, they have gone back to school super well. We had a great summer – a little bit too much time apart – but overall, the time we had together was great. We got in one mum and kids trip at the end in the UK – we spent a few days in the Cotswolds in the same village Mum took us over 30 years ago. It was excellent. Hana told me we should get more money and spend the whole summer in the same village next year – sign of a good time. Legoland for a day didn’t hurt either. But overall they both just seem in so much better places than a year ago. Of course, we still have our ups and downs but doing better.
Message 2 (2/2): Other Updates:
Finally, the one downside (or the one that I’m willing to admit) to my denial period was that I lost some of the spontaneity and clarity around the fact that life is short. While I hate every ounce of the cancer in my body, I can only be grateful for some of the things that have happened since I got diagnosed, including that initial life is short, say yes more (and no, when you actually don’t want to something) and looking for the enjoyment in life. So I’m trying to go back to that – not on a large scale which may have slightly been the case last summer straight after the diagnosis – but smaller, baby steps. For example, yes to badminton – my new favourite thing to do on a Friday morning, entering Padel tournaments and being absolutely flounced but enjoying every moment of it and, not to worry, still playing tennis badly and enjoying it. Small things but trying not to let my fear of looking like an idiot or not being good enough (something that plagued me for years) win again!
I’m also back on my quest to find something to do to help me make meaning of this (or rather for me to do something meaningful with this). I think it was on the back burner for a few months and while I still don’t know where to go with it, it’s something that I’m going to keep exploring.
On that note, definitely more than time for me to stop writing. I will continue to try and write about some of the harder thoughts and if I do ever get there, I’ll share. For now though, things are better – good days and bad days but the good are more frequent. To things being better and fuck cancer 💜💪🏻
2 October 2024
I know I wrote a really long update not that long ago and here I am again. 1. I promise to be short*. 2. I think too good not to share. 3. I refer back to previous messages, it has long been previously established that I’m an oversharer.
*Mainly because I have a meeting in 12 mins – aren’t you all lucky.
I had a PET scan yesterday*. I got the results today. I will share Sam’s summary: Katherine’s pet scan was excellent. Complete metabolic response. Essentially all the spots of cancer whilst still visible show no activity at all. Which means the cancer has been maximally suppressed. Likely to remain that way for some time, which is great news. [slightly edited for grammatical purposes only] My understanding is that this has likely been the case for some time but we could not fully appreciate this until we did another PET scan. I feel some relief that I think the other scans did not give me. It also makes me slightly less frustrated with the side effects/pain that I have from the medication and will try to complain less about them (sorry to all that have had to listen to me on that front).
*In almost bigger news (obviously not at all but maybe slightly), I was NOT asked if I was married prior to the scan and the doctor – who had to come down for a third attempt at getting the cannula in (first two were not great) – fully (like really) laughed at my is this when I get superhero powers joke.^ Massive win.
^I refuse to see his laugh as a sympathy laugh because I had been crying and in considerable pain because of the first two cannulas. And honestly, good to be crying about pain rather than frustration and helplessness (I.e., most other cries down at KHCC – the previous hospital).
I’m very happy, relieved and determined to keep on this track. Let’s hope we keep kicking the shit out of this. Love to you all and Fuck Cancer 💜💪🏻💪🏻 (an extra one for today’s results and the 2 mins I have spare before my meeting)