15 September 2023

It feels a bit like an update is not so necessary this month. No update is going to beat last month’s update. And after such positive news, part of me feels that I should really only be writing a happy, positive update. To that end, honestly, was thinking about skipping the monthly update … anything but “woohoo all is good” seems very self indulgent and a bit whiny. However, I also do want to try and be honest and part of that is also saying when things aren’t great. I think it’s wrong if I just write updates that suggest that all is good and perhaps portray that I’m coping amazingly well when in reality it is a fault struggle.

Medically, no major updates. I did a blood test this week. All looks good and I can keep taking medication*. Was the quickest and most pain free trip to KHCC (King Hussein Cancer Centre); likely due to the fact that they manage to take some blood on the first attempt and I didn’t have to see my oncologist🙂

*Started new cycle Wednesday and realising now that I should really avoid writing updates in the first days of a new cycle – the Friday and Saturday of the first week have consistently been the worse and I feel negatively influence my updates. On this first Friday of cycle 5, annoyingly seems consistent – I feel very average.

In short (and I actually think really in short) in other news, I haven’t been feeling the best the last few weeks. Whether it’s side effects of the medication or the fact I’m not sleeping well or the challenges that have come with back to school (Hana’s having some trouble but getting there) or a comedown from an awesome summer or all the weird and wonderful (or in reality, not so wonderful) thoughts in my head or – as recently explored with the help of some friends/colleagues and google – the anger (or as I like to refer to it as the rage) stage of acceptance* (not a competition [it’s not, right?] but definitely feel a gold medal effort on shock and denial – I did them well) – to be clear, I’m not walking around constantly in a rage (could be slightly debatable… but really, those few meetings don’t count as always 🫣🤣) but I have definitely felt some very overwhelming feelings of anger the last few weeks. Somehow, maybe, the high of the great news in August may have brought out some anger – hard to explain but feeling so exited and happy about anything to do with this shitty disease is something I struggled with (am struggling with). On a positive, I do feel more hope – slightly scary in some ways – but also exciting. Starting to hope and even make some plans to do a few more things that I always had hope to do prior to May but had thought maybe not possible since May.

Consistently conflicting emotions floating around are not my thing – definitely in the basket of things I don’t do so well – hats off to all those that manage them well 🙂 And a sorry to all those that had to put up with grumpy me – I’d love to say it won’t happen again but let’s be real it’s still on-going (sorry Daniel, Christine and Amman peeps) and will likely happen again.

On that note, going to try and shake the mood and the very average physical feelings with a camel ride. Yep, you have read that correctly 😳😳🐪🐪

Thanks all for reading, for those reaching out and for all the love and support (even when I’m grumpy). 💜

12 October 2023

It’s October, it’s been around four weeks since I last wrote, I’ve done another blood test, seen the doctor again and… I guess time to write a quick update. With that, I sat down to write just now and, didn’t really know what to say or where to start. And not because I have so much to say but more because I think maybe there isn’t much to say this month. I’m more-or-less going along. Not much change from last month.

Largely that is true. I have felt the same the last four weeks, which is okay but not great. I can’t quite describe it. So I go with it being like I’m about to come down with something*. A bit like I’m running at about 75-80% of my normal self. So, I continue to be okay, really, I’m fine. But also not really. But just maybe I have finally acknowledged that I might actually need to just take a few extra steps to help myself be fine. Whether that is taking a day of sick leave, saying no to things (or yes if that so suits me) or just being okay with not coping all the time. So overall, why it doesn’t feel like much has changed, I think recognising that I’m not running at 100% and that is okay, is pretty big.

*If you have not been on the end of me saying this, I will add that importantly, I have a tendency to have to also touch my neck to indicate swollen glands or something (though my glands are not swollen) as I am saying it. Somehow this is meant to help depict to those on the other end of my statement/actions just how I’m feeling.

Medically, all is going well. Maybe even better than well. I had my dreaded appointment with my oncologist on Tuesday and… well, wow, it was almost like a different doctor. I’m not sure if she was having a good day or whether it was me crying in response to her asking “how are you?” – whatever the reason – she was good. Even better, she did a physical breast examination and said she couldn’t feel anything. She didn’t really say anything else but I’m taking this as a good thing! Bloods remain good and after my week off, I’m once again back on the Ribo.

Emotionally, I have realised (a little late to the party maybe) that this is not going away. That I am going to “live with” cancer. Not sure I have come to terms with it but I assume recognising this fact is a good step. With consistently not feeling physically good, I think it has been a little hard for me to stay emotionally good. There’s been some of the anger and frustration that we saw last update. Though I am trying to be more mindful of why it’s there (beyond just being angry about having cancer, which interestingly, actually has not to-date been the main reason behind my anger) and if there are things that I can do to get rid of some of the anger (in addition to eating salt & vinegar chips [ahaha, if that is possible, if you know you know, there’s really nothing better or more helpful] – but rather, writing* or exercise**). Just recognising where the anger is coming from and validating it (some of it, not all of it deserves validation) I think also helps.

*I have been trying to write a bit to help me work through some of the anger.

**This week, I started tennis lessons – who knew that hitting a tennis ball could be so satisfying!

So yeah, seems like this month has been a lot around me recognising things, slightly boring (and annoying) – doesn’t make for an awesome, inspiring or funny update but useful for me (or that’s what I’m telling myself). I guess this somehow also lines up with Breast Cancer Awareness (awareness – recognition) Month – this month in many places across the world – Jordan also. I actually really liked the Jordanian twist on the pink awareness ribbon! So while I said I would NOT wear pink this month (thanks Kamini for wearing enough pink for most of us so far this month), I would actually wear one of those ribbons*.

Looking ahead, no doctor’s appointment in November – just bloods and my third IV infusion for the bones at the beginning. Then at the end of November, I will do both a CT and a MRI. Results will be through in the first week of December. Maybe I will touch base then (who am I kidding, I’ll likely drop you all line in November too!!).

I will not comment on regional events but to those outside of here and that have asked or reached out, all is okay in Jordan. My love and thoughts to those friends (and to all of those people on both sides) that are affected by what is going on.

Much love to all and, as usual, fuck cancer 💜💪🏻

26 November 2023

I’m late writing this month. Partly because there’s not a lot to say again and partly because the general time for a monthly update fell in my birthday week and I was really not feeling it – my birthday or an update.

A ~wise~ man* once wrote You can get so confused that you’ll start in to race […] headed, I fear, toward a most useless place. The Waiting Place ….^ I am definitely a little stuck at the moment in this useless place. Today, in particular, as I had a MRI and a CT and am waiting the results. But, if I’m being honest, the last few weeks (maybe months). I feel that I’m waiting. Just waiting. When I went to write what I’m waiting for, the first thing that came to my mind was waiting for this to go away. I know it will not. So maybe just waiting for some good things to happen, waiting to know how much time I have left for good things, waiting to make decisions on what I should do next. All useless waitings. I need to skip to page 34 and find the bright places where Boom Bands are playing.** Slightly easier said than done but nonetheless important that I do.

*Initially, I wrote a wise man but had a niggling feeling that the man behind Dr Seuss was not so much a wise man and that there were some issues with him. A quick google search reminds me that he was likely very much racist. So in an attempt to counterbalance my quoting of him, also sharing an article – for anyone that wants to know more – that identifies the issues with Seuss [https://sophia.stkate.edu/cgi/viewcontent.cgi?article=1050&context=rdyl]. So while brilliant at writing, I do not agree with his some of his deeply problematic life views and my quoting of him does not endorse his life views.

^Dr Seuss, Oh, the Places You’ll Go!, 1960. **Ibid

So for those reading these updates for the medical updates only, I’ll start with that. I’m doing quite well. Definitely managing the medication side effects better. I still have days where I don’t feel great but overall, I find each cycle is a little better. I still feel that I don’t quite have the energy that I used to have and as the weeks go on, I feel I am operating on less and less. It reminds me that I do need to take a break and build the energy back up.* I’m definitely excelling at catching colds off the kids (feels good to be doing something well :/), unfortunately, not doing as well at then kicking them (I’m currently going into week three of the most recent cold but am hopeful I’m close to kicking it). While I feel a bit susceptible to bugs, my blood work is still pretty good and positively this allows me to keep taking the medication.

*One positive result of not always having the best energy, is that I have been able to improve on my this movie is not amazing nap. Not only can I very effectively do this at home (the kids consistently remind that I have still yet to actually watch a full Zombie or Descendant’s movie) but have extended this being able to nap in the cinema as well. I successfully missed the critical moments of both the recent Paw Patrol movie and Wish^.

^I was a bit disappoint in the new Disney film, definitely not a Frozen (or Frozen II for that matter) or an Encanto. But then, see above note, I did sleep through a relatively large chunk of it, so I might not be the best judge. The kids did really enjoy it.

I should get the results of my scans in the next couple of days. I think there are no indications that they won’t be as positive as they were back in August. Still, obviously it’s slightly stressful waiting. I have committed this time round to ring Sam at whatever time they come through, so in case there is another mistake in the report, I don’t start googling. Dr Google is a dangerous path to go down. I will send an update here with the results.

That’s it for medical news. Feel free to stop reading here!

In other news, I turned 42 earlier this month. I think because of the year of birth, somewhere around May – when all the medical stuff kicked off – I was frequently referred to as 42 already. So much so that I actually thought I was 42. Kinda cool to realise a month or so ago that I was actually only 41 still. Alas, I am now 42. I love birthdays but not this one. This one was probably the most difficult one I have had. It seems that this is normal. It’s a time stamp and apparently these can be hard. I definitely felt a sense of anger over the year that was 41. I started the year with so much hope for a good year – my year. And I couldn’t quite bring myself to look forward to 42 with hope. Though I realise I can and I should. While 41 was probably the hardest year I have faced to date, there were also so many amazingly good and fun moments and I know that 42 will have those moments too. I just need to find the Boom Bands.* Interestingly, someone asked me some weeks back what was the most surprising thing since the Cancer diagnosis and it was so easy to say – not just surprising but truly awesome – all the support and love from near and far. It continues to amaze me; to feel and know that this past year is something else – the bright places. Ah, I should not write updates when I’m feeling emotional.

*I wonder how Beyonce would feel being referenced as a Boom Band? As an aside, I do really think that there were many other moments that were really the Boom Band moments (as highlighted above) but she was awesome.

My plan to pretend it was not my birthday was not exactly foolproof.* Another option, as presented by my psychologist, was to remember that I am here now and what I had to look forward to in the next few months. In the end, I did a bit of both. I pretended it was not my birthday and I reminded myself of the fun things ahead for the next few months. An awesome weekend with half of the Islamabad crew (now been and gone and it was brilliant), hopefully excellent scan results, the infamous 12 pubs of Christmas (will it live up to the hype this coming weekend?^), a weekend in Doha and, most importantly, 20 December the kids and I will be jumping on the plane to come home for three weeks. Watch out Adelaide 🙂

*Not the least because I have two kids who love birthdays too. They were brilliant. I got the best homemade gifts from the kids and half of their teddies, including an awesome thankfull carot poster (spelling mistakes on purpose), where I can take a carrot (paper, not a real one) daily and write what I’m thankful for (obviously it was demanded of me by the two gift givers that they were what I was most thankful for on day 1 [and to be fair, it is entirely true almost every day]). Another aside, I need to teach my kids how to spell my name.

^I think the answer can only be yes.

And finally, the real update this time is that while I’m not going so well with the writing these days, I am loving the tennis. I am not that good (except for when I steal KK’s lesson on Thursdays) but it is so much fun. Oh and for a new thing to help me take my mind of everything, Escape Rooms. If you haven’t done one yet, highly recommend them. So much fun. And I do challenge you to do better than “the best team ever to not escape the room” (thanks to KW and PB for being the best escape room team to escape the room and not).

That’s it from me until tomorrow or the day after (whenever I get my results). Fuck Cancer 💜💪🏻

27 November 2023

Thanks to everyone for the awesome messages and response to my update – so much appreciated.

CT and MRI scan results came through today. The key finding from both is that there are no changes from the previous scan. No reductions but most importantly, no growth and no new cancers seen.

It’s the not the results from August – in that my main tumour did not reduce in size by half – but no change is good and what can be hoped for.

I was a little (colleagues and Sam may disagree with the description a little) disappointed, maybe a little sad. I wanted and hoped for better than good. I think I was looking for exceptional (maybe some reductions) but key is that treatment is working and I’ll stay hopeful for exceptional next time round!

And good is still definitely worth celebrating!

Love to all and, once again for good measure, fuck cancer 💜💪🏻