6July 2023

To do a TL;DR or not 🙂 I think not so necessary, will likely just be another “short” update.

A friend I caught up with last week, told me she liked the updates and encouraged me to keep writing. So blame her 🤷🏻‍♀️ (or just don’t read it – spoiler, I’m doing good)

I am currently going through a 90s alternative (according to the Apple playlist title – I would probably say more 90s grunge or alternative rock) music-listening phase. I’m not sure what this says about my current frame of mind. Angsty? Reliving my youth? Who knows! In any case, I will try not to let the angst of the songs seep through into my update! But some quality music – a bit of Pearl Jam, Silverchair, Radiohead… Pulp’s Common People just came on – great song! I highly recommend a revisit 🙂 (I’m obviously missing Ted, so resorting to music chat … just not the same; I’ll do better next time)

Anyway, I had my biweekly blood test yesterday and all looks really good. The thing (neutrophils) I need to look at is good – a bit higher (higher is good) than the blood test two weeks into taking the ribo last cycle (too low = bad immune system = having to stop the Ribociclib [or ribo as I like to refer to it – I mean, who can really pronounce Ribociclib (maybe many of you… we’ll just have to add it to the list of words I can’t pronounce)], which makes the hormones more effective)*. So this is great news. And probably not related or maybe it is, I’ve been feeling better and better the last week.

*Cleary – based on passed updates – you know I love a good bracket inside a bracket. But bracket inside a bracket, inside another bracket – I think I have broken some writing rules there 🤔 Sorry!

The first week of taking the ribo again, I wasn’t feeling great and then fell into a bit of a hole (metaphorically) Saturday week ago (the day before travelling to Geneva). I was feverish, body aches, exhausted, fuzzy-headed (more than normal), nauseous and just generally feeling really rubbish. It was a low point. I was worried I wouldn’t make Geneva – massive shout out to Jenny who got me through a rough-ish few hours on Sunday morning as we started our travel to Geneva (and just generally looked out for me most of the trip 💜). Anyway, since the Saturday and Sunday morning, I have been progressively feeling better. And so much now that I haven’t had to take anti-nausea tablets the last few days, can drink coffee (a bit touch and go at times but I push through when required) and just feel more human. I’m feeling really optimistic that my body is adapting to the ribo, which is only a good thing! I’m still having some hot flushes and lately, have been finding sleep difficult but all much more manageable.

Under the Bridge – another classic!

Not just physically, emotionally, I also feel pretty good. I had an amazing time seeing so many wonderful friends in Geneva and feeling so much love and positive thoughts directed towards the kids and I. It was amazing. It was also really emotional. I think processing some of what is going on with some people I have been closest to over the past couple of years – who helped me through the separation/divorce last year and who also know when I’m lying – was not easy but maybe necessary. Alongside some very slow jogs next to the lake, I definitely had some pangs of wanting to be back there. But it was also great to come home to the kids back in Amman and really feel that it was coming home. And where I also have some amazing people looking out for me (and the kids).

So feeling good.*

*For some honesty, as I was planning the summer period here and some plans may have (fingers crossed not but likely) fallen through. I did realise that I had been very much avoiding any periods of time alone. I really don’t want that just yet again, better to keep busy. I realise this may indicate that I’m not quite as awesome as I say but on a positive, I do have an appointment to talk to someone tomorrow – so I’m getting there!

The kids are doing okay. It’s a bit up and down. Hana is processing and a lot of that seems to be with anger directed towards me, which is hard but understandable (not always in the heat of it but with distance I can see/say it). Leo says less but it is clearly also processing things – has told me that if he wakes and cannot find me in my bed, he worries I have died 😳. It‘s really a lot for a 41 year old… can only imagine what it’s like for a 6 and 8 year old. But I think/hope, in general, they are okay.

Ending on Are You Gonna Go My Way, which seems somewhat fitting. I have felt a change in how I’m approaching things at the moment. I’m definitely doing as much as I can to say yes to new opportunities, trying to make the most of things and aiming to do things that make me happy. Not sure why I waited so long 🙂

Blood tests, ecg and doctor in two weeks. I’ll try to back in touch then xx

20 July 2023

TTL;DR: Not that I’m preempting a massively long update but just in case.

Physical health: Apart from the whole cancer thing, physically doing quite well. No updates in relation to whether or not treatment is working.

Mental health: Harder to qualify with a few words, so I’ll go with, I’m doing okay.

Highlights: I think they are yet to come, looking forward to the next few weeks – the Summer Renaissance 🙂

For those interested, the longer – I share too much – update is below!

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👆🏻 Seems I finally broke WhatsApp with my update – it was actually too long and WhatsApp wasn’t able to handle all the italics, bold text and ~crossed out words~ – which, as you know are critical to my delivery!!

So I deleted and have broken it into two parts 😕 (realising now another option would be just to shorten it… but hopefully last update for a month, so I’ll keep the update in all it’s randomness)

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In the last update, I had referenced some summer plans that looked like they would not work out. It was due to visa issues, apparently the US not so keen on some of the places I’ve lived… but fortunately due to a number of very kind people (thank you again!!) looking out for me, I was given the chance to explain where I’d lived and fortunately got a visa for the US last week and am now writing this as I sit, nice and Cozy, on the plane bound for Chicago (probably the main reason for the need for a TL;DR – too much time on my hands)! A side note to all of it, travelling on my own without children is amazing, travelling on my own without kids to go on a holiday without kids, seems almost the unattainable dream of many a parent – I really am lucky this summer (I qualify it with this summer as overall, I’m struggling a bit with the “I’m lucky” words. I know I am lucky in so many senses but also, have been recently having a few moments of “why me, why now” in relation to the whole cancer thing and in that sense, feel quite unlucky*. I guess normal but am trying to pull myself out of that rabbit hole). Back to a holiday on my own, of course I am missing the kids (they travelled with Younes to Morocco last Saturday) and can’t wait to go pick them up in Morocco in a few weeks but OH MY GOD, I’m excited about a holiday on my own. Cannot remember the last time I did that!

*It’s also a bit the same with the “everything happens for a reason”. Not others saying it but I notice it when I say it, which I seem to do all the time!! I say it and then… argh, what’s the reason here?! Maybe looking back later, I’ll see a reason or I’ll just finally stop bloody saying it 🙂

Sorry for the sidetrack, back to an actual update on my health, the actual reason we are here (not really for me to brag about my holiday plans… but I’m That Girl, so can I add: Rekha and Beyoncé in Chicago 💜; Fern, Constanze [hopefully some other friends too], maybe a show and the baseball in New York; and, then Cabo Verde with the kids ☀️ – is going to be brilliant). I had my doctor’s appointment on Tuesday. To say it was underwhelming is a slight exaggeration. Doctor was running late (and/or they forgot about me), an one hour and 40 minute wait for a five minute appointment with the oncologist*. It very much felt that she was doing her best to get me out of the room as soon as she could. So didn’t feel I got much out of the appointment. Though, I did ask about the genetics testing results (yeah, I had to ask and got the strong impression she had known the results for some time), massively positively for us (the family and the kids), it is not related to genetics, which is amazing (the results ~may have kicked~ did kick off a bit of the questioning/spiralling around why and then some guilt associated around that – not guilt in that I’m blaming myself [well not too much], more guilt around why I started the questioning and was struggling with the why when I should be [and am] just pumped that it is not related to genetics). No measuring of the bigger tumour in my breast – so no update on whether it is getting smaller. I did get the green light to start round three of the Ribo (started yesterday) as my bloods are all very good. And very positively, I don’t need to go back in two weeks for a mid-cycle blood test. So I get a whole four weeks without having to visit the KHCC (King Hussein Cancer Centre [Kamini, Cherin, Hilary – just flagging this here for you – KHCC = King Hussein Cancer Centre :)])! I am really happy about that.

*I thought I should give an update about my oncologist. I actually don’t remember how much I’ve shared about the doctor. Initially, we were really happy. And honestly, in terms of the medication and her treatment of the cancer – she is technically good. But since the first appointment, I have been more and more disappointed with my interactions with her. Had some issues over getting a referral for a psychologist (which she didn’t even suggest but I asked for), getting a certificate for sick leave was also a far from nice experience, the fact that beyond the medication I am taking, there have been no discussions on anything else (i.e., refer back to comment about psychologist, no mention of exercise being important or anything else) and, she just doesn’t give any space for me to raise concerns (and we all know I’m a sharer [purposively left out the over from that word] and while I don’t want to tell her everything I’m doing [not sure I should be telling anyone everything – hmm, sorry to those very many people I do tell everything – ~over~ sharer here :)], it would be nice to feel that she was willing to listen to at least how I was coping with the different side effects) and annoyingly, I find her quite patronising if I show any hint of anxiousness. End result, I think I probably need to look for a new oncologist. But there’s a big question mark over what would be a better use of my time…

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… finding a new oncologist or starting a campaign for season 4 of Ted Lasso^?

^Harris, SJ, ‘New Oncologist or TL Joke’, Whatsapp Chat, 18 July 2023 (Really not sure of the Oxford [or is Cambridge] citing regulations for bad Dad jokes in WhatsApp chats but really don’t want to take credit for ~this joke~ a joke that is not mine.)

When I do go back to KHCC in August, it will be a big and important week – blood tests, CT scan (to see if there any reductions, changes in the tumours/legions), appointment and then another IV infusion on consecutive days.

On another massive positive, I did have my appointment with the psychologist. She is absolutely brilliant (thanks again Alex G for the referral/recommendation). She really validated a lot of my feelings and, importantly the side effects I’ve been feeling but did not even really realise were side effects. For example, my struggle to concentrate. She helped me understand the impact the hormones, medicine, the news that I have a life-limiting disease, the other side effects and all the other cancer chatter (or radio as she really aptly described it – a radio that at times can just be on softly in the background or up loud crowding out all other things but since 1 May is always on) is having on my mental capacity. It made me feel so much better, as I just thought maybe I was doing something wrong or not coping as well as I should because I have been struggling to focus and concentrate on things. This realisation also really helped me be kinder to myself about the need for a sick day once a week and just to be kinder to myself in general when I am struggling.

She also told me that it was totally okay and even healthy for me not to want to be alone and to keep myself busy when the kids left. Thank you thank you thank you to all the wonderful friends who stepped up and offered me company the last few days. I didn’t spend a day or evening alone (just for clarity and to avoid any awkward misunderstandings, I said evenings, not nights – nights were just me and the cats). A special shout-out to Paty, who gave up an afternoon-into-evening and two additional evenings for me, including brilliantly hosting us last night when we decided to show up at her house to celebrate her upcoming plans (she knew she was hosting when the doorbell rang and people were standing outside the door). The dancing was what I definitely, and I think what we all, needed 💜💜💜

Back to the psychologist. We had a second session this week. It was equally excellent but a harder session as we predominantly spoke about the kids. How they are coping – what more I can do to help. And how I’m coping (or not coping) with the idea of their future without me. Still the one thought/thing that, without fail, I struggle to talk/think about. I’m going to leave that topic for now. Maybe for another update… or not… it’s a hard one.

But that psychologist appointment, with the oncologist appointment the next day (which also fell on my former wedding anniversary [and though I am really doing okay on that front, it did bring up some different thoughts and emotions that are not necessarily cancer-related but also really hard to disentangle from the current reality of having cancer – fuck cancer (sorry for swearing)]) and being on my own, meant for a tough couple of days mentally for me. I had planned to update Tuesday after the doctor but couldn’t quite get there. Not that I want to hide that I have bad days (obviously, as I just told you all and once again, I need to apologise to the team at work who likely saw/felt that the last few days – sorry!), but I’d probably rather share them in the past tense rather than when I am right in the middle of them. I’m still not amazingly awesome but some great fun last night and the fact that I have an amazing few weeks ahead of me… I’m getting there!

So I think that’s it (everyone still reading breathes a sigh of relief 😅). Aside from all of the above, life does continue somewhat normally and somewhat massively abnormally. No way six months ago I would be sitting on plane on the way to Chicago to see Beyoncé! On this side of things, yes, I am lucky.

Next update! I can’t see having much to update on healthwise until around mid-August – more-or-less four weeks from today! Will do my best to be in touch then!

Sending everyone lots of love and good Energy 💜🪬☀️

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Ps For those wondering, Beyoncé was my playlist for this update! I so wanted to disperse song titles from the Renaissance album throughout the update but, I only badly got four. Really not easy. Writing Break My Soul seemed a little too dramatic (but could also be believable and I didn’t want to alarm anyone) for a cancer update. And Alien Superstar, Plastic off the Couch just seemed really hard to naturally drop into the update. And Church Girl, I mean, too unbelievable for me🙂

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Pps I loved loved all the 90s alternative rock suggestions I got after the last update – awesome. I made a playlist taking from my own and from the suggestions. And have been loving it!!

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Ppps For those with Insta, you may have or may not have seen that I shared my tattoo. I was/am ready. I still love it that much that I realised it didn’t matter to me anymore if others didn’t like it!

20 August 2023

Message 1/2: Sorry for the delay in coming back to you all – busy celebrating the win of last week 🙂 I did wonder if I should read the ~room~ community – 80+ positive reactions to a short update – and leave the update there but here I am again (in my defence – which should make sense later on in the update – continuing on trying to do more of the what makes me happy as opposed to trying to makes everyone else happy). I guess all I can say is sorry (not making great strides on the whole apologising less – baby steps) and for those not interested – nothing hugely different to the update from last week, just a bit more medical detail and a bit more detail of the summer adventures.

Before I lose those not interested in my ramblings, thank you, thank you, thank you. I don’t think I can say thank you enough to everyone! Everyone who shared, thought, sent positive, optimistic and hopeful thoughts (particularly those who did it for me when I couldn’t but also knew when to hide it when I didn’t want to hear it) and to those that were there for my not so positive thoughts and made me promise to always share them – giving me the space and power to know that it was okay to have them. Thank you to those that were physically present to support me, the kids – those of you here in Amman and those that have been able to visit, have just been amazing, whether it was a meal, a beer (or six), taking the kids for an hour (or six), a dance or a shoulder to laugh and cry on (but most importantly the laughs) – and those who shared their support In other ways, messages, blankets, a book written just for the kids, flowers, FaceTime chats, voice memos, song recommendations – all of it is so much appreciated and needed. People have been writing and saying how strong and positive I’ve been and how that had to have contributed to this first positive result – there’s no way I could have been even remotely as strong (and I’m not actually agreeing here that I’ve been that strong, many a weak moment) or positive without all of the support and love I have received.

It is only three months in, to what will hopefully be a long long journey, and I know this level of support is likely not needed all the time nor sustainable/expected but really, any of it is and will always continue to be appreciated and loved. So thank you.

So medical stuff. The largest tumour in my left breast measured at different times from 3.9 to 3.3 cm based on the different scans. On the first CT scan it measured 3.3 cm. On the CT scan last Monday, it measured 1.8 cm!! Almost half the size. Incredible really. Going in, I was going to be happy to see that things hadn’t progressed but to actually see such a decrease – I was mind blown! The legion on my rib also shows signs of response to the treatment. As a wise and favourite doctor* said, this is the first hurdle and we have sailed^ over! It also means we can be optimistic, confident even, that this treatment will continue working for the next 18 months. And then we aim for 2-3 years and hopefully optimistic for 6 🙂

*This doctor was obviously Sam, my brother, not my oncologist. My feelings about my oncologist here have not particularly changed. She was much nicer this appointment – not sure if it was because I had Robyn with me (she has always been slightly better when I have someone with me) or she was sharing good news. But she downplayed a symptom to the medication and was more-or-less brief in her information again. But she gave good results.

^I italicised sailed as, while I have totally cleared this hurdle, I guess it wasn’t without a few stumbles leading up – physical and emotionally re: previous updates. But wow, does it make it all feel just so much more manageable – now that I know it is working!

A funny story to look back on, I got the CT scan report through on the Monday night before my appointment. Robyn, Sarah (for non-Australia/family friends – two family friends from Yorketown, who I have known since around 10 November 1981 almost) and I – with our best medical minds – read through. Looked great, lots of “normal”, the great news about reduction and then in the findings: Evidence of new distant visceral metastasis. Don’t recommend googling that – not great. Thankfully after an only 20 minute – but what felt like an hour – wait, Sam woke up in Australia and said this was clearly a typo and should be: No evidence of new…. I trust Sam implicitly but couldn’t quite relax until they confirmed at the hospital that it was indeed a typo. Not uncommon apparently and why, we really should not look at medical reports before seeing the doctor!

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Message 2/2: Aside from all that, my bloods were good. I can keep taking the medication. Last cycle, whether influenced by all the fun being had in Chicago and New York, side effects were much less that cycle 2. A few small issues – some moments of feeling relatively horrible but they passed and did not last more than an hour or so, unlike the days from before. This fourth cycle, also feels pretty similar so far. Some moments of not feeling great but manageable. But also on top of the second IV infusion to strengthen my bones (last Wednesday), which seems to have had very little effect (unlike last time) beyond a few moments of feeling a bit weird. And not helped by some possible food poisoning (mixed with alcohol) over the weekend but all recovered from that.

So a few people have commented that these great results must be in part due to all the fun I’ve been having – me, after some years, being me again – and that I need to keep doing it (that or the tumour heard Robyn was on her way and shrunk in fear)! Sadly, I don’t think all the same is possible – really not sure I can squeeze in another Beyoncé concert in Chicago with Rekha, theatre, Comedy, jazz, baseball and museums in New York with Fern, Constanze and other new friends or a second amazing Cabo Verde trip with the kids*!! But I will do my best to finding ways to continue being more myself and saying yes to things I might have said no to in the past and looking to do things that will make me (and the kids) happy! I can’t deny there won’t be tough moments still but in my best oversharing self, I’ll probably share them and I know there will be people to help me get through them.

*The summer tour was Amazing. I won’t go into all the gory details of just how amazing it was – I think many of you suffered through my Insta stories for a few weeks – but it was really fantastic. I had many a moment of being genuinely happy and even some moments where I was almost able to forget that I had cancer. I also had some great processing moments about cancer, about the future and the kids. I even managed my first conversation about the future and the kids without crying!! But I will say – I absolutely love New York, Beyoncé is the Queen, there are things in life better than a mint slice, am a new fan of baseball, want to drive a dune buggy again and watching a sea turtle lay eggs on the beach at night was something we’ll never forget.

What’s next – Cyprus tomorrow with Robyn, Sarah and the kids, the infamous Catherine coming back to see us again (let‘s all hope she breaks her vow of never posting in the community again), Clara and the kids visiting early September and then Daniel, Christine and the kids coming to visit, so all very exciting – but probably what you were more interested in: medical stuff. In just under four weeks, I go back for blood tests and medication refill (*but don’t need to see the oncologist, woohoo!!). In just under eight weeks, same again + oncologist. 12 weeks, bloods, medication and 3rd IV. 16 weeks, that will be the big one again, early December, new scan and new updates on what’s happening.

I’ll try and keep updates down to the 4 weekly tests/check-ins. Thank you to everyone again. Sending lots of love back to everyone 💜 and, one more time, Fuck Cancer 💜💪🏻