18 May 2023
Thanks to all that have reached out to check up on me. All the love and support is so very much appreciated.
A quick update for everyone – a little repetitive for some but a recap for those that may have joined a bit later…
I have stage IV breast cancer. Affected are my left breast, lymph nodes on the left, third rib on left, sternum, two vertebrae and my pelvis (I’m sharing all this, as I’m hopeful as we move forward it will be relevant as I will be able to say that they have reduced 🤞🏻)
Anyway…
The bilateral salpingo-oophorectomy (look at me learning new words) went well. Surgeon seemed happy. Slightly more effort due to previous surgeries but overall straightforward! I am a bit sore today, I think the movement yesterday to get home knocked me around a little bit. But great to be home and see kids. And Catherine (and Daniel, but sadly he leaves today) is looking after me! The kids… well they are doing their best… switching between extra loving and … let’s just say extra energetic (I’m being kind).
The decision on the surgery was my choice – it was that or have monthly injections to stop the ovaries working (as I cannot start the hormone therapy with estrogen in the body). I’m hopeful/optimistic the hormone treatment will keep the cancer under control (ideally reduce it) for many many years, so for me, it felt the right and optimistic decision to take them out rather than have the monthly injections for years!
Now I need to recover a bit and then hope to start hormone therapy. I have an appointment on Tuesday with the oncologist and hope to get news then on when i can start.
For those asking, I will start the treatment here in Amman. The King Hussein Cancer Centre is a very good hospital and Sam was entirely in agreement with the proposed way forward for my treatment.
I won’t have any real updates until next week after my appointment with oncologist. I will send an update then.
Damn, I missed one major update … for those watching Ted Lasso – massively disappointing episode yesterday. Catherine, Daniel and I all in agreement… really needed better from them yesterday. Let’s hope for a better episode next week 😂🤞🏻🤞🏻
23 May 2023
TL;DR (for those not as hip – up until 5 mins ago also me [maybe given I just used the word hip, it is still me] – too long; didn’t read, which means I’ll do a quick overview now for those that don’t want to or don’t have time to read the longer rambling message below):
I’m okay: physically, pain is much better and mentally/emotionally, probably some room to improve.
Treatment follow-up: I will start hormone therapy tomorrow and life should go somewhat back to our new normal.
Thanks again to everyone that has been reaching out, sending love/good vibes and just generally keeping me in their thoughts. It is really very much appreciated. Apologies to those I haven’t responded back to – please know it’s not about you, it’s me 🙂
Overall, I’m recovering well from the surgery. Some minimal pain but really manageable. I saw the surgeon today and he gave me the all clear, which is great.
Sunday morning, I managed to get the kids in the school bus (we may have been slightly late and when I questioned why they were not late for Uncle Daniel and Catherine, I was told that it was simply because they were being their goodest for them 😕), anyway, I think it was the first time since 1 May (when I first had a mammogram, ultrasound, biopsy and all this crap kicked off) that I had been home alone. An amazing sign of the fantastic people and support I have around me but also the first time I was alone – likely entirely necessary but oof, a lot of time for thinking about the fact that I have a life-limiting disease (a new term I just recently read related to my diagnosis). A couple of tougher days, hence, I have not been so responsive to messages but I think these days will come but, more importantly, they will pass too.
On a positive, I saw the oncologist today as planned. Almost four hours at the hospital for some tests and around 10 mins with the doctor but great end results. I left the hospital with medication. Tomorrow I will start the hormone therapy (for those interested, Letrozole [hormone treatment] and Ribociclib [stops cell cycling and increases effectiveness of hormone treatment]) – 4 tablets once a day and this will hopefully reduce or at least manage the cancer. A few side effects to keep an eye on but all seem pretty manageable; it seems the only real concerning ones from doctor’s perspective (this is very much my perception and I cringe at Sam’s thoughts reading this) are heart changes and low immunity – both which we’ll keep an eye on with some regular (bi-weekly) blood tests for the first short period.
Next week, I’ll go back and do an IV to strengthen my bones (zoledronic). This is only needed every 3 months or so. The other tablets – for as long as we can while it keeps working!
I’ll see the doctor again in a month and we’ll hopefully see where we are and how things are processing.
I probably should be pumped. It seems all quite straightforward and very much like life can go back to normal, which is awesome. I’m not quite there yet. While this is much less intrusive than major surgery and chemo, I can’t help but wish I could go back a few weeks when I thought that would be the treatment and I’d be able to beat this. I’m a bit stuck on that while life will go back to a sort of normality, the new normal has fundamentally shifted and is very likely not as long as I had imagined. But, this is something I will hopefully come to terms with and make adjustments as we go to make the most of the time I do have!
For now, as previous messages, we’ll stay here in Amman. And hoping to go back to work tomorrow. Medium-term plans (as I’ve had a few questions on that), I just don’t know for now. I think I need some time – some of the new normal – to work out what that will look like.
Lots of you have asked if I need anything – thank you! For now, I’m okay. Nothing is coming to mind but send through the good thoughts. Visitors are also welcome – I can offer a bed and gin (also tea, coffee, water…)
I am not going to bombard you all with lots of updates… I will check-in every so often to let you know how I’m going but can’t imagine it will be that often.
Thanks (and apologies for the ramble to those that made it through) 💜
31 May 2023
TL;DR: Most important: Jordan’s Crown Prince is getting married this weekend (really nothing tops that update).
Treatment: 1 week into treatment and have managed to remember to take the pills every day 🙂 bone strengthening IV infusion done today.
I’m still okay: physically – everything is manageable for now. Emotionally/mentally – also manageable for now (kids, friends and colleagues might have other thoughts on that though 😕)
For those ~interested in~ willing to read a longer update…
I think not as much to say as last week. The last update seems really long ago but, at the same time, like it was yesterday. Not so much new has happened but did realise today – 31 May – that it’s been exactly a month since I first went and had a mammogram. Gotta say that May 2023 has not been a stellar month but memorable, I guess.
This last week, I have been reminded that for good and bad – limited-life or not – it goes on. I went back to work, kids got haircuts, we had a lovely dinner with friends at the Cow (if you know it, you know it), the kids got sick (including a quick emergency visit and CT scan for a suspected concussion – end result though, kids are fine), a roof-top pizza night, a couple of very slow jogs, a “we need to take our mind off s!*t things” shopping trip, a delicious Yemeni lunch (which we need to empty from the work fridge😕 ), other fun things, other not so fun things and I was forced to watch Zombies 2 and 3 for the third time (for those unaware of the joy… Disney singing/dancing movies… still undecided what is worse – the songs, the acting, the dancing or the storyline). Thankful it does but it felt a bit tougher this week and, honestly, could have done without the kids getting sick (and a third watching of the Zombie movies).
As we are resuming our normal lives again, I’m struggling a bit (massive understatement) with the normal. As much as things are normal, they also really don’t feel normal. But I’ll keep saying it and maybe eventually convince myself. Related and letting you know as some have asked, I have this week start efforts to get a referral to speak to someone about all that’s going on, maybe help me with the emotional/mental side of things (you would think this would be an easy referral to get – somehow not as straightforward as I’d have hoped). In any case, hopefully in the next few weeks that will be set in motion. As a side note, also trying to sort out the same for kids – to help them hopefully also process some of this.
Anyway, 6:30 each morning I’m taking my medication – have managed eight days without forgetting – so that‘s a win. Keep wondering if/when symptoms will come*. I am very tired, extremely grumpy (sorry again to the kids and work colleagues here) and yesterday, felt nauseous most the day. Not sure how much of this is just me (grumpiness, tiredness… in all reality could just be me), the menopause, the medication or a bit of stress related to the current situation.
*side note, another possible side effect is my hair thinning (not losing it all or anything, just some). I totally freaked out the other morning as I felt more than normal came out in the shower but I think, in reality is in my head and it is probably way too soon to be the drugs – was probably just a bad hair day 🙂
Recovery from surgery is still on-going. Have been a bit sorer the last couple of days but may have been my own fault for pushing myself to go to the gym and have a jog. But overall, I think good – felt good to go have a jog (not the first time but the second time was marginally better). Why, you ask? Exercise has proven results and is highly recommended for menopause symptoms and patients with metastatic cancer (I really feel that just once it should be ‘eating salt and vinegars chips/crisps’ or ‘drink more X’ [with the X not being replaced with water]).
This very long update is a result of spending most of this morning down at the hospital waiting for the bone strengthening IV infusion. Was meant to be 10:30 but some delays as they had to check some blood tests done yesterday (they thought maybe that the 6 contrast scans/MRIs in the last month were a bit too heavy for my kidneys… but got the all clear in the end). It didn’t happen until 11:30. Apparently might have some flu-like symptoms from this medication. I was told that I need to up my fluid intake to 3 litres a day … for the record, they did not specify what type of fluid 🙂 Taking all that into account and the fact that the city is shutting down for the Crown Prince’s wedding tomorrow, we are escaping Amman for a beach weekend in Aqaba… hopefully that will help both the flu-like symptoms and surgery recovery! And should be good fun for the kids!! This sort of normal stuff is the good stuff that I’m glad we can continue to do.
Next update… not sure there’ll be much to update on in the coming weeks. Next week, I just have the one blood test and an ECG and then two weeks after seeing the doctor. So maybe around then. We’ll see how it goes.
Finally, I’m going to wait to once I’m back in Amman to watch the season finale of Ted Lasso – no spoilers please. Fingers crossed all good things from this last episode 💜
*I think factually correct to say that I didn’t have as much to say as last week… but clearly, I’m taking some liberties and saying too much (I was told this week that I was “a sharer”… I guess living up to that)🙂
**A harder thing to talk about but I think important to share is that I found some email correspondence between myself and my doctor in December 2021, where I had asked if I should get some pain in my left breast checked out. The pain went away and, in the end, we agreed to leave it until it came back again… ~not~ to get all preachy, do go and get something/anything checked out if you have doubts or concerns.
And now I’m done! Much love to you all 💜
14 June 2023
Hi! No TL;DR today – I’m going to keep it short*(one can only hope). I skipped an update last week and- to be honest- was going to roll with the skip onto next week and message after my doctor’s appointment but have been receiving a few messages asking how things were, so thought a short update might be good.
*Not quite as short, so quick summary here: last week = bad; this week = good. And overall, I’m okay, even good.
I last wrote immediately after the IV infusion two weeks ago. All I can say is that I am very thankful that is only once every three months (though, apparently, after the first, the second/third/fourth are easy – again, one can only hope). The IV infusion side effects blended beautifully with some minor on-going issues from the surgery and the side effects of the other drugs, resulting in me looking like death the next day (quoting a lovely ~but~ and honest friend) and, really feeling pretty terrible. Thursday was the worst of days to date. Things gradually improved but it took until Thursday the next week to really feel a bit human. I’m now experiencing the joy of daily nausea, headaches, some pretty extreme tiredness and the odd hot flush but feels much more manageable without other things.
The worst of it though was really the fact that I couldn’t stomach coffee! I did worry for a few days that the headache and tiredness might be related to that but a google search told me that coffee withdrawals don’t normally go beyond a few days. So when I still had these over a week after my last coffee, I was relatively confident they were more related to drugs.
Last week, I went and had a blood test and ECG. Heart is good and blood work also good enough to mean that I can continue on the same drugs (there’s a risk that the immune system can drop too low and we would need to change some things but so far, so good – a slight drop but not to worry right now).
The best news is that the drugs that are causing the nausea and headaches (I think/hope) are three weeks on and one week off. So yesterday marked the end of three weeks and today, I started the day with a coffee and it was fantastic.
All in all, last week was a difficult week – physically and emotionally. This week feels different – I feel different – and probably makes it easier to write an update. I even answered ‘good’ today to a ‘how are you’ question; something I haven’t been able to do honestly since the 1 May 🙂
Aside from the slight negative tone from above, there were also some great moments over the past few weeks: the kids LOVED Aqaba – swam for days; Tomoko flew in from India for a few days and we enjoyed a super fun Australian Embassy party (randomly for Australia Day – which was not mentioned [possibly rightly so but don’t want to get too political here] and was more than five months ago) – dancing for a few hours and not thinking about the big C was awesome; I got a haircut; I learnt what the phrase ‘to put on the ritz’ means (apparently to dress fashionably [who knew?] and, sadly no, this was not said in reference to me); I received some beautiful flowers (thanks CP); mum don’t read the next bit – I met with a really cool tattoo artist and will hopefully get my second tattoo this coming weekend – to quote her – to take back control of my own body (I’m sure mum will actually be fine); the lovely Rekha arrived from Geneva last night to hang out for a few days 💜; and, this week is a no hospital visit week (the first since this all started – it’s brilliant)!
I hope everyone is well. If I didn’t respond to you last week – you probably now know why – totally about me and not about you. I do always appreciate the messages I receive – it really means a lot to me – thank you.
And finally, most importantly, Ted totally, 100% delivered with the finale. Without giving away any major spoilers, they had me at the Sound of Music crossover. It was exactly what I needed. And I may need to now go back and watch seasons one and two again… one because it is so good and apparently these updates have encouraged a few new Ted Lasso fans and I need to keep up with their commentary from the earlier seasons 🙂
Will try and send an update next week after my doctor’s appointment.
Lots of love to everyone xx
And because I’m lazy, I’m going to play the C-card (which a couple of brilliant colleagues actually made and laminated for me – that really should have been part of the update above – just awesome) and use this channel for a non-related update which is not relevant for many of you (sorry but refer back to the start of this message).
19 June 2023
Hi all. I hope everyone is well. Sorry for another message so soon after the last but I said I would send an update after the doctor this week, so a quick update. It went more-or-less as expected – no changes for now in treatment and, while hard to really assess, no changes in the external measurement of the larger tumour in my left breast (again, no change was expected after only a month). The good news* is that my blood work was good enough to start the second cycle of the Ribociclib (this is the awesome three week on, one week off medication that leaves me feeling nauseous, tired [but I realise that is not just me] and with a headache pretty much consistently but it is awesome because it makes the hormone therapy much much more effective… so positives clearly outshine the negatives).
*I say good news as it seems slightly contradictory to be celebrating taking this medication again but obviously it is good news given the aforementioned positives. Though, yes, I am apprehensive about starting again tomorrow. This past week has been really great – I have felt so good and really almost like my normal self again – maybe even a few moments of being even better than my normal self 🙂 But given the few weeks before when I really didn’t feel good, I’m a bit worried about going back to that. But, and it’s a big but, there’s hope that my body will get used to the medication and hopefully soon I’ll have consistently good weeks where I feel myself or even better! Also, I am now armed with some anti-nausea medication, so that should help.
No big rambling emotional paragraph (who am I kidding – paragraphs) about the highs and lows of my week but – there are two major updates that I cannot help but share! The royal theme from the royal wedding a few weeks ago continues: on Saturday, we ended up having lunch about five metres away from the King and Queen of Jordan – no photos as security seemed pretty against that but we did get a very nice smile and hello from Queen as we left 🤩. I will not confirm or deny that initially we thought it was the new Princess and maybe her father (thanks google for ~correcting~ guiding us). Second update is that I did take back control of my body and follow through with the tattoo plan. I’ll share the two small ones I got with help from the kids (Hana drew a smiley which was copied on my foot and Leo asked for a red balloon). The main tattoo is – for now – for me. I absolutely love it and will share it sometime in the future but I just want to love it for now without outside opinions 🙂
As for future plans, I don’t need to go back to the hospital for two weeks and, even then, will just be for a blood test. And then another two weeks after that, I’ll go back for bloods and to see the doctor. So hopefully you won’t hear from me for a few weeks at least🤞🏻
That’s it from me. I think maybe I’m finally getting the hang of this short update thing.
Lots of love to everyone again xx