8 March 2025
It’s been some ~days~ months since the last update. As time continued to creep up on me, I started to question why I hadn’t sent an update for so long. I came up with many different reasons. Primarily (and if any asks, that’s the only one I’ll really admit to), I haven’t had many ‘medical’ things to update on. The glorious status quo continues; the medication is suppressing the cancer. I have good days and bad days with the side effects. I have switched my hormone twice since the last update – the current one (unfortunately not available in Jordan but I was able to get in Australia, thanks some lovely people in my corner there) seems to be better on my joints and I definitely have less pain. In particular, in my feet – the last year or so the pain in my feet has been quite draining/frustrating but that is more-or-less under control now. I can now get up to three months of my medication at once from my new doctor and it feels much less like it is controlling my life. The only downside is that I have to be more organised with appointments/getting my medication but being a bit more organised should really not hurt me that much!
Another reason (for a lack of updates) is that there has just been a lot going on that really has nothing to do with me having cancer. I hesitate to write sometimes for fear of oversharing my dramas, when so many other people are going through their own very real and difficult struggles. So caveat this update here with you do not have to read further, all medical updates have been shared and overall, I’m going along.
Then there’s the whole, I haven’t had much to share that is directly related to having cancer. Aside from that the fact that pretty much everything I do these days is somehow affected or influenced by the fact that I have cancer. My father passed away in November and I miss him. He had a fantastically great life and I am so grateful that I was able to spend a little bit of time with him a few weeks before he died and importantly tell him that I love him. The initial weeks after his death, I actually think for one of the first times since I was diagnosed, the constant cancer theme-tune in my head was almost drowned out. As things settled, I have found myself thinking quite a lot about death – losing my father (under very different circumstances to what I’m going through) has brought some of the abstract thoughts around dying, closer to reality. I have made certain plans. I know the kids will be cared for and loved. Knowing how lucky I was to have my father in my life until I was 43, I am angry and sad that my children will not have the same luck that I had. Do not worry, I’m still optimistic that I can stick around as long as I can for them but the reality is also that they will very likely not be as long as I want. So while I am grieving the loss of my father, I’m also quite selfishly grieving the future loss of my children. Yeah, a little grim and another reason why it’s not been so easy to write. I should just be so grateful for the time that I have and live in the moment that is now – not waste time grieving future things that have not happened yet.
On a weirdly high point of the last month or so, the kids and I were talking over dinner and they were being silly. Leo looked at me and said, it will be death of you. I said, what? And he replied, we will be. I laughed and said, no you won’t be. Then Hana and I looked at each other and I’m quite sure we were thinking the same thing, so I said that will probably be the cancer. And we both laughed. Again, a little grim but I have always found humour one of the better ways to deal with this. And, oh my god, how far have we come that Hana can now also handle this humour. Both of them, have come so far from a year ago or even six months ago. They are not only learning to live with it but to also live in spite of it. Amazing.
I will refrain from sharing any updates about work and the situation of the humanitarian world at the moment – that would be more grim than anything else. Just to say that it’s been a tough month or so; not sure we’re anywhere near the light at the end of the tunnel but I remain hopeful that there is a light, even if we can’t see it yet.
I was though asked to write about living with cancer and working for UNHCR for a page in our organisation. It has taken me almost six months to write something but just today shared something with the person that asked. I am going to read it through again but I may also share here – use you all as a bit of a test case on whether or not it is any good (though as a wise friend told me, no one is really going to write and tell me it’s shit*, so I would really only be sharing because I want to share it).
*Obviously I’m open to your real, honest feedback ~only if it’s good~ 🙂
To try and end on something more upbeat; I am now entirely obsessed with badminton. Still doing tennis but badminton is where it is at for the time-being. I’m seriously considering if 2025 is the year that I try squash for the first time – I really don’t think there can be enough racquet sports in my life.
Another obsession at the moment is Chappell Roan – for anyone in need of a good car song to sing at the top of your lungs, I highly recommend Pink Pony Club. Apologies to those at work who have had to hear me sing it – when I thought I was alone or singing in my head but sound was actually coming out of my mouth :/
I don’t highly recommend Apple Cider Vinegar on Netflix at the moment. I’m sure for many it might be entertaining viewing but should have come with a warning, it might feel way too many bad feelings.
I am very much looking forward to the next few months, I have a few days alone done at the Dead Sea next week (while the ex is in town to see the kids) and end of April, very excited for the Sri Lanka wedding! Some great things to look forward to and hopefully keep the volume down of the cancer theme-tune in my head.
With love to everyone. And Fuck Cancer 💜💪🏻
15 April 2025
Just a quick medical update today. That being said, all going well, today I will hopefully finally finish the piece of writing that I was asked to do for UNHCR’s internal ‘coping with cancer’ page. I am shortening it – finally someone had the courage to tell me that what I write is too long.* And I may share it here for your constructive (~as long as it’s positive~) feedback.
*I can literally hear you all breathe a sigh of relief but sorry (or not sorry), not sure if that feedback will impact on these updates.
Distracted already, back to the medical updates. Medically, all is going very well – excellent even. I had a PET scan yesterday and the results are pretty much the best I can hope for. The October PET scan confirmed that the cancer was not active and the scan yesterday reconfirmed that and even showed that the tumour in my breast has continued to get smaller. My favourite line from the report was “ongoing excellent response to therapy“.
The relief I felt is hard to describe. The process of scanning and waiting for the results doesn’t seem to be getting easier. While I don’t ever forget that I have cancer, this process definitely brings it to the forefront and now almost two years in, the fear that “this scan will be the scan that shows it’s not working anymore” feels more legitimate*. Very happy that I can kick that fear down the road for now and doing my best to focus on excellent response to therapy.
*Also with full acknowledgement that this might be further enhanced because I have been binge watching Grey’s Anatomy while I’m child free the last few weeks…
Before I sign off, yes, 2025 is the year that I bring Squash into my life. Why did know tell me how good it is?? Only played twice but already slight obsessed!
My new sing as loud as possible in the car song is Messy by Lola Young. Warning that it does have some swear words – apologies that I did not include a ‘graphic content’ warning for Chapell Roan 🙂
I hope everyone is doing as well as they can be. Love to everyone and with some extra love and strength for UNHCR friends in this group, it’s definitely not an easy time.
As always, Fuck Cancer 💜💪🏻
8 July 2025
It seems I’m feeling wordy today. So apologies for what looks like a bit of a longer update. And really, not so many updates on the medical front – hidden in there somewhere but for those not wanting to read: all going along as we want.
My updates usually coincide with medical stuff. My routine on a day that I have to do medical stuff, is usually, ring mum as I drive to the hospital, medical stuff (usually with some stress and not always – not today for example – but often involves some crying) and then I head to my favourite cafe for some food and some writing. The great thing about my new doctor is that I now only do this every three months. The downside to that, is that I don’t call my mum as much (sorry mum) and – I just realised – I’ve lost that time, sitting by myself writing and processing. For many, this may be an upside 🙂 but I do feel the absence of this time. Often the writing doesn’t go very far and is definitely not for public consumption but it does really help me to process and just gives me a moment where I can sit with what’s going on and with my “feelings” around it. Most of the time, I am actively trying to ignore it but over the past two* or so years, I am constantly learning that it’s always there and trying to ignore it all the time doesn’t really help me. My takeaway today, is that I probably need to build this time – I don’t need to just wait for a medical day to take a day off work and sit and do some writing.
*I’ll come back to this – but yes, hit the two year mark in May!
Today my routine was also slightly different because the kids came along for the medical stuff. I told them last night – as an aside to a different conversation – that I was going to the doctor in the morning. Hana immediately reacted – concerned something was wrong. When I explained it was just the normal medical stuff, she asked to come along. I said no. About an hour later, she came out of her bedroom in tears because she had a nightmare about me dying (not from cancer, her nightmares usually involve me being shot rather than dying of cancer). It reminded me that they don’t really know what the ‘normal medical stuff’ means and while there are many things not known about this situation, maybe seeing what the normal medical stuff is could help demystify it a bit and hopefully help them not equate it to me dying. I also realised that I don’t give them much space these days to ‘talk about it’. We go about our ‘normal’ lives and if I look back over the past year, it doesn’t come up as much. A year ago, if we were with other people, it came up often but at lot less now. And just as much as I need some time to sit and process it, I probably need to ensure that the kids have the space to talk about it a bit more often. So they came with me, they got the added fun of watching me do a ECG (all fine), in addition to the normal stuff – my oncologist appointment (all fine), the back-and-forth at the pharmacy about my meds, a blood test (also more-or-less fine) and then an injection for my bones. I think the lack of pain experienced during these procedures was good for them to see (though, Leo did seem slightly disappointed that the ECG didn’t hurt). And while we moved between floors of Abdali Hospital and in between the kids coming up with their own games/songs (one particularly impressive rap about people leaving from Leo), there were also conversations around me having cancer. Leo shared that he cannot see me as an old person like Grandma (he did quickly try to recover that statement by suggesting that Grandma was not in fact that old) and we discussed whether this was related to the fact that I do have cancer and will likely die from it – as opposed to dying from old age. Hana asked if I would have a funeral and we discussed that it would likely be more up to them. She declared that “no offence” but it shouldn’t be exactly like Grandpa’s (she was not a fan of the church service but thought the burial was okay). I said no church, no burial and that I wanted colour. The kids then decided that the “invite” would have banners saying “no black allowed” and “fun” and that I would be burnt (I do hope they took away that it’s called being cremated but unclear – so if the invite to my burning comes at any point, I’m sorry but apparently it will be quite the party!). Later, the kids had a slight disagreement over if I would be alive when Hana was 20 (from what I could hear, Leo was on the side of me not being alive [seems like a slight theme here]); when I was asked to weigh in, I just said that I really hoped so. Not related to cancer, I did also learn that Hana had a long wenis. Yep, apparently that is a word/thing – google at your own risk.
Okay, so as I’m writing this – it sounds a little dark or bleak but the conversations were all actually really nice (for lack of a better word). They were calm, there was some laughing, discussing and probably just as much as it is a constant theme in my head, it probably exists in theirs too.
On the theme of the kids, they finished school last week – years 3 and 5 done. I can’t believe in September, Hana will be in her last year of primary school. We celebrated* the end of school year with a weekend down at the Dead Sea with another family (with 3 kids – the eldest being the same age as Leo). It was interesting to watch my two be the eldest – in particular Hana – I realised just how much they are growing up and at times becoming more responsible. We’ll go down to Aqaba for a few days next week – a quick get away before they head off to Morocco for four weeks. And then we’ll do our ‘big’ summer trip at the end of August – with a few days in Zanzibar (definitely a bucket list location for me).
*Not so much celebrating from Leo’s point of view, who spent the last week (or weeks) of school being very upset that the year was ending and his only friends leaving Jordan.
On the topic of not celebrating something, back on 1 May was my two year-oh-shit-I-might-have-breast-cancer anniversary. Last year, I woke up on the 1 May despondent. I was just overwhelmed with grief, anger, frustration and (quoting from an update from then), tired of having to deal with it and just not wanting to deal with it. And while I had good moments throughout last year, those feelings stayed with me a good part of the year. And yes, they are still there but I woke up this year on 1 May more optimistic. Optimistic that this year would be better, that I would do better – a fresh start. Conversely, I also did not want to spend 1 May grateful. I was once again surrounded by some great people to help me cheers to the occasion – to life. And to support me not feeling grateful and allow the tears (but a hell of lot less than last year). A wise friend asked me for the top three* (or maybe five, the number of alcoholic beverages drunk at the time makes it slightly hard for me to recall) things I was not grateful for. And it felt good, allowing myself the space to say them without following them up with a but I’m lucky for so many things (which I will do now). Because, yes, I do know – there are so many things to be grateful for (and I am – for the most part).
*What exactly they were… go back and read the parenthesis straight after the star.
I do remember one thing that came out of the things I am not grateful for, is a relatively constant feeling of wanting to do more and feeling that I was not doing enough. For those that read the piece I wrote for UNHCR (still not published and not sure it’s going anywhere but do appreciate those that read it and reached out to me with feedback), you will recognise this part, which not so articulately but better than I can manage now describes what I’m trying to say: I want to find reason in my current situation. I don’t think it has happened for a particular reason but I do have to acknowledge my privilege […] and maybe I can do something or more with the cancer diagnosis. I know I cannot change the world, I cannot probably change my life-limiting diagnosis, but can I use my fortunate position to do something positive? Can I find something to help me have a purpose with this disease? I haven’t moved very far along with this but is definitely something I want to think more about (and maybe even take some action). Circling back to the start of this update, maybe taking a day every so often outside of medical stuff will help me. Also open to ideas from others on what I could do…
When I wrote last time, I referenced the “not so easy time” for UNHCR friends. It’s still not easy. I am very fortunate that I still have a job and for the time being will remain in Amman. I am massively failing to not be all consumed with the frustration of work the last months but trying – really trying – to move out of this – put in some boundaries and stay in my own lane.*
*Needs a lot of improvement.
I will sign off here. I have a squash game to get to (a fantastic way to help me get rid of some of the frustration mentioned above). But a thank you to everyone that keeps reading these updates and encourages me to continue sending them. If anything, writing them helps me – so thank you for allowing me that space!
Lots of love to everyone. And, as always, Fuck Cancer 💜💪🏻
Oh, and not that I think anyone is really waiting for my song recommendations (because my taste is not exactly stellar), I felt amiss not adding in my current favourite song – Lizzo finally has a new song out and is firmly at the top of my favourites – Still Bad. Lizzo never disappoints and has got me back into some of my old favourites of hers. There is a language warning for Still Bad (and most of her songs).
24 September 2025
Exellent update. PET scan on Sunday confirmed “excellent response to therapy”. The doctor/s* reconfirmed on Monday that I continue on the same path and I don’t go back until end of the year for a next check-up.
*Who am I kidding, while I like my oncologist, I only really trust Sam’s reading of the scan report/opinion so doctors.
A long story-short* (and yes, I’ll actually keep it short), I was not in a good frame of mind going into the scan. I have had some pain in my left breast (body-part zero for the cancer) and we brought the scan forward a few weeks to check. To say I was panicking/spiralling is a bit of an understatement. I really thought it was active again and became painfully aware of how unready (mentally, physically, actually) I was for that. I am so very relieved (also an understatement) that this is not what I’m facing right now and actually (also mentally, physically) felt the feeling of “now you can breathe” again.
*I did write a longer update about some of the many feelings I had around all of this but it was long and annoying and ended with me declaring that I was going to shut down this community because I needed to stop writing/talking and actually do something. I’m not saying I won’t but I’m going to sit on those thoughts/feelings for a bit and make a more considered decision, rather than reacting to the current situation.
For now, a very relieved me sending love to everyone, a huge thanks to those who had to deal with my spiralling and, of course, Fuck Cancer 💜💪🏻