Categories
Cancer

[CANCER] New Treatment?, Treatment Break and Pleural Effusion #BusyLivingWithMets

I last blogged a couple of weeks ago, when I’d been sent home, breathless, without treatment. I had hoped that a treatment break would mean that I felt amazing, but, although my skin has cleared up a lot, and a lot of sensation has returned to my hands/fingers (not all!), mostly I still feel super sleepy/de-energised, and we’re undecided if my breathing is improving…

Really appreciate those who wait for these updates, or send queries without expectation of reply – several days behind on messaging this week .. so here it comes:

Alongside cancer taking over my life, I have managed to do an interview with UCB on cyberbullying, had a welfare chat with work, started experimenting with short opinion videos on Tik-Tok, pre-recorded with The Hopeful Activists (re grief and hope) – which should be out next Friday, had my car serviced, my house alarm serviced, had an overdue opticians appointment (yes, my sight is worse, probably partly due to age, and partly due to chemo!), put away my large COOK delivery (in amongst other house tasks), and had some lovely time with my bubble. I’ve also attended a scarf-tying workshop, listened to a session on ‘Hybrid Church’ hosted by Fidge, and took part in a panel alongside Rev Pam Smith and Rev Dr Pete Phillips – also on ‘Hybrid Church’…. and yeah, am likely spending Christmas in Manchester.

Treatment Date 16?

Last Monday I went back in for treatment, but we knew that if my breathing was still a problem, I’d be sent to see the on-call oncologist. Obviously my COVID test had come back negative, and I exhibit no symptoms anyway, but that had had to be crossed off the list of possibles… Was it going to be treatment 15, delayed, or…

My bloods were taken (as they take at least an hour to process anyway, and if treatment was to go ahead, we wanted to make sure those were done/we had the information). I then went to talk to the oncologist … he said he could see that I was ‘visibly breathless’, and although it could be fatigue from the treatment, something psychosomatic, he wanted to check in case it was a blood clot on the lungs, so said I needed a CT-AP.

CT-Scan

Collecting my things, we trotted off to the Ambulatory Care Unit, where I was put into a chair, more questions/forms/people introduced to me (always quite overwhelming), and they said although I have a port in for my bloods, outside of the oncology unit, no one is trained to use them – so a cannula had to go in. I’m SO hard to cannulate – so they sent their top person – after trying on the back of my hand, he got it in on the inside of my wrist (yeah, as uncomfortable as you’d think, spent all afternoon asking how soon it could be taken out!). I was then sent back to the oncology ward to have some more blood taken (from my port), as oncologist wanted to see how fast I’m metabolising my Clexane blood thinners…

Back to the ACU, popped into a different chair (with some lovely NHS soup, sandwiches and ice cream), until the CT scanner was ready for me – the cannula was used to feed the dye into me so they can light up different parts of my body (I know, such a medical explanation!)… before being guided back to the ACU to await the results (and yes, everyone’s on their own, there’s lots of safety procedures before going in/out of different areas of the hospital). Bearing in mind that I got to hospital about 10.30am, it was gone 8pm before the results of the scan came back – I didn’t have a blood clot on my lung ‘so that’s the good news, but you do have some fluid on your lower-left lung’ (pleural effusion).

I recorded this when I got home (and had just climbed the stairs, so my breathing was particularly bad) – before I crashed into bed (the following morning could hear a squeak of protest from my lungs):

 

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Tuesday

Tuesday was mostly about sleep, housework, watching the webinar, and reality TV:

 

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Wednesday: The Christie

After much faffing around in the morning, Andrew picked me up to take to the Christie – as I’d sent quite a few challenging questions to my oncologist, and as I can’t take people in, at least I’d have a friendly face (and no need to drive) at the end. A lot of waiting at the Christie – bloods were done fast (and the nurse remembered me from when I’d come in for my new tumour diagnosis in July – once she’d seen past my purple wig)… and then it was all about waiting to speak to the oncologist – appointment was 3.30pm – I think it was gone 5pm by the time I went in (and the waiting room was v empty)!

 

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Forgot to press record (can be useful when on own and trying to capture notes as well as have a conversation to listen back afterwards – for private use only, obviously!), but we talked through quite a few things (maybe not everything on my list, so I’m trying to talk to nurses to get more of that) but:

  • The pleural effusion, on the scans, looks too small to treat (drain or pack) without causing bigger problems – so thinks that the breathlessness is down to toxicity side effects from the paclitaxel…
  • Monday: continue with paclitaxel treatment, with a further 10% reduction on the dosage and see how I respond.
  • The scan has also shown that the tumours haven’t grown any further (it’s only been about 5 weeks since my last one, although that is enough time for some eager tumours…)
  • Whilst my bloods are taken Monday, they’ll take an extra one, and send it off to see if I’m suitable for capecitabine (link to PDF) (commonly known as cape) – a drug that is tablet based (not IV), 2 weeks with tablets, 1 without.
    • Some people cope with this really well (onc pulled a face when I said ‘for 5 years, so guessing not expecting it to last that long), fatigue, sore hands/feet, nausea sound like quite common…
    • I’ve found it quite funny that lots of people say I look particularly well this last week or so … yes, I’m not having any treatment, so my body may be continuing to eat itself inside! Also, I put makeup on one day!
  • If I am suitable for cape, I can choose to start taking it, and see how long it works for – and return to paclitaxel afterwards (as it does seem to be keeping things stable, possibly even shrinking the tumours, though the shrinkage may just be down to radiotherapy). Usually you can’t return to a line of treatment finished – but in this case because we’re taking a break for toxic side effects, and not because the tumour has grown, it remains available as an option.
  • I asked about other treatment options beyond this (I have no idea how long any of these treatment options last, but I was due to have paclitaxel for 18 weeks, then ongoing, and have not even completed that). After cape, Eribulin is a possible option, then the ‘platinums‘… but TNBC (triple negative breast cancer) does not have the hugest number of treatment options (or the kindest) – so I will need to keep talking to those in my groups about what other options people have tried (without going down the desperate and weird routes that the vulnerable often seem to attempt).

The last couple of days have been busy, and I’m seeking to chat a bit more with some of the nurses about some of the questions that still feel unanswered. I have oncology ward nurses, Macmillan palliative care nurses, district nurses, specialist secondary breast care nurses at the Christie, the oncologist, the GP, the pharmacy team … lots of people to talk to – though sometimes it feels like you’ve being bounced between them!

Palliative Care

If you think that palliative care is all about ‘end of life’, please watch this so you have a better idea. I know that I am being treated with ‘palliative intent’:

 

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Cancer

[CANCER] One more ‘evil’ docetaxol #BreastCancer

So, it’s been another #waitingroomfeet day, as it was time for a review with my oncologist, to see how I’m getting on with treatment:

After a bit of discussion as to how I’ve been getting on … the numerous side-effects that are just making life hard/tedious/hardwork… Despite having made it to a gym class the day after chemotherapy (whilst still high on steroids), I have since found things hard work – with ongoing bloody nose, exploding face, fatigue, sleep interruptions (though sleeping tablets have their place), loss of taste, D&V, low energy, brain fog, etc… I HAVE made it out each day to one of the nearest Pokestops (around 1km round trip), but at least a couple of days that was in my PJS, very much unwashed, and not really with it:

About 8-9 days after chemotherapy my brain started to work again, which I am super-thankful for, as that is the thing I most fear losing any control over:

I’ve managed, despite appearances, I think, to slow down a little more this chemo, whilst continuing to ditch a few more things from my house, and going ‘back to work’ (from home) last Thursday, I’ve watched the whole of Schitt’s Creek, a season of Humans – so far, and the whole first season of Dead to Me, along with a few other bits and pieces, some computer games, some jigsawing!

The blistering face has been one of the hardest things to deal with, until someone in YBCN yesterday suggested Nasceptin (which I was given last time), and Germolene, along with remembering to take my anti-histamines.

Today’s Discussions

  • Anything up to 6 docetaxol is standard first line treatment to combine with Herceptin and Perjeta, but as I’ve had a lot of chemotherapy over the past 18 months, and it’s one small met which has been treated with stereotactic radiotherapy; I will be having the Herceptin and Perjeta by infusion every three weeks for life (unless it stops working, in which case we’ll have to try something else) but had to be started with the (decidedly toxic) docetaxol. As I’m finding it quite tough, we discussed whether to stop the docetaxol now, but agreed to continue with the next round as planned next Tuesday…
  • I asked when next scans would be, but he said that’s for discussion with Dr Colaco on Wednesday (who’d said 3 months after the radiotherapy – and we’re only about 6 weeks), and that’ll be the next one.
  • I start bisphosphonates (bone strengthener) after I’ve had a 2 cycle gap from the docetaxol, and will have that every 6 weeks, also for life. It’ll be added onto alternate infusions I’ll already be having (so less hospital appointments overall). With my maths I make that 29th July … the first one is supposed to give horrendous flu-like effects for a few days, so we’ll see.
  • Once the docetaxol has finished, we’ll restart the Zoladex and Exemestane again, although this may be a temporary measure. A referral is being made to the gynae clinic to discuss the possibility of an oompherectomy (which would maybe be September?)
  • I’ll have another review on 17th June with the oncologist, which is also the next day for IV infusion (chemo ward said probably only a couple of hours for that treatment, not sure if any of the side effects continue, but the worst shouldn’t!).

Also, I’ve always wanted to apply for this writing scholarship in New Zealand, my Head of Faculty encouraged me to give it a go, and the oncologist said yes, something should be able to be sorted out (it’s 2 months overseas, so somehow I’d have to get my infusions abroad).

More #WaitingRoomFeet?

I’ve two more appointments this week, counselling tomorrow, and Dr Coloco on Wednesday (which I assume is to check how I’m feeling after radiotherapy, and to arrange the scan). Looking forward to going to MPA Thrive on Thursday (though I won’t be making the crack of dawn start!)

Work, Work, Work

At times I’ve wondered why I push so hard to keep working, but I’m being given space to work on the work that feels meaningful for me, and things I want to get done, so been trying to keep on top of emails, MSc and PhD marking/feedback, and working on this piece of work for an academic journal (rough abstract):

Finding a Voice: An Auto-Ethnography of Cancer in a Digital Age

This auto-ethnographic paper illustrates the experience of a digitally literate scholar undergoing first primary breast cancer treatment, and then treatment for metastatic spinal cancer. Social media is now a part of everyday life, with 77% of UK internet users having at least one account, and 91% of those having a Facebook account (Ofcom, 2018). As one of the estimated 2.5 million people living with cancer in the UK (Macmillan, 2017), the author, with over twenty years online, naturally sought to use digital tools, has blogged regularly since diagnosis in August 2017, and is a regular participant in social media spaces. The internet is seen as a ‘dangerous place’ by the media (Lewis, 2014), and full of ‘misinformation’ (Macmillan, 2017), a perspective that the author sought to consciously disrupt. Large numbers of people look for support and information online, including through peer-to-peer social network spaces (Bath, 2017, Baucom, 2017, James, 2014, Pietrangelo, 2017), and this paper offers empirical insights into the therapeutic impact gained from participating online.

In a pre-digital age authors such as Frank (1997) and Conway (1996) used storytelling to recount the disruptive experience of cancer, both physical and emotional, and how it reshaped the sense of self. This paper reflects upon participation within digital spaces, the importance of understanding the diversity of the different spaces, especially amongst public and private spaces. In telling the story of ‘the self’ throughout the cancer experience, we identify efforts to be ‘authentic’ and ‘real’ online, within spaces that remain mediated, recognising that there’s not one right way for everyone to use social media. Distinguishing between ‘disease’ (medical) and ‘illness’ (subjective experience), the paper considers the sharing of knowledge and information, but also the psychosocial benefits of being part of a conversation that is currently growing. The paper will contribute to an understanding of how patients use digital spaces as part of the ‘cancer experience’.

Photo by Claudia Soraya on Unsplash

Categories
Cancer

[CANCER] Yet another appointment: Another Oncologist

So, finishing off my rounds of 3 different hospitals in a week, this morning I was back in the Christie for an appt with Dr Colaco, after yesterday’s confirmation that surgery is not the right route. I’m still trying to find the balance between keeping myself moving/active and being overtired, but I was at the hospital before my 9.30am appt! Once again, it was #waitingroomfeet time:

I kept myself busy with some of the daily apps, and some of the easier emails whilst waiting, but it’s difficult to concentrate when you’re not sure when you’re going to be called!

I was called back in, because there had been several intervening appointments, he felt the last one (with printer not working, etc.) was a little rushed, so wanted to be sure I knew what was happening, and sign some more paperwork so that (although I’m not on a trial), the Christie can use data about how I respond, etc. and any pain. He was clear that I’d had the mask made at Salford so I had some familiarity with the space and the team, so that I am more relaxed for the actual treatment, in the hopes that will be faster… I will see Dr Colaco at the first radiotherapy appointment, six weeks afterwards, and otherwise will be combined with seeing Dr Chittalia (to make less appointments).

It’s recommended that I read this document (oh, joy to the potential side-effects, nervous about up to 20% chance of fracture, but #deepbreathing), and be prepared to allow up til 6-7pm on the day of the first appointment. There’s potential for pain (‘it’ll be a bit like we’ve punched you’), and nausea (so cyclizine on standby), but there’s no need to delay the chemo, so that should all start 15th April… but between now and 29th March, when radiotherapy starts, there are no appointments planned! WHOOP!

*this all relies upon how I react to things, and other things that are out of my hands, but otherwise can make some vague plans … and get to watch Hamilton!

** Now how long before I’m well enough/can find tickets for Harry Potter & TCC!

Categories
Cancer

[CANCER] Another Appointment: Oncologist #BreastCancer

This week I thought I was just getting away with a couple of appointments today – one to have my port flushed (for which I wore my new shoes!) – which unfortunately she said has a moisture lesion and shouldn’t go swimming for another week :-(, and another with my oncologist to see where we’re up to on the treatment process (and yes, I look quite weary):


So, this week, I now have:

  • An appointment at Salford Royal with Mr George, surgeon, to see if I should be going down the surgery route, rather than radiotherapy. The expectation is that this is not required, but all bases are being ticked.
  • An appointment at the Christie with Dr Colaco to double-check my way through the radiotherapy treatment, and need to ask him if I need a bigger gap between radiotherapy and chemotherapy than we currently have… which would mean not starting on 15th April (which means I might be asking for 6th May start date, to ensure that I can still go to Hamilton!)

I asked Dr Chittalia the following:

  1. The thyroid biopsy undertaken the other week was ‘level 2’, although the sample wasn’t great, but there’s no concern there, although likely to be a further double check later in the year.
  2. How many rounds of chemotherapy? No more than 4, but likely 3-4. Dosage likely to be 60ml per m2 (when regular is 75-100), or possibly less. I asked for as little as I need, please!
  3. We’re looking at denosumab rather than zometa for bone strengthening, which will start once the chemo drugs have finished, and be every 3-6 weeks, tied in with other infusions. This will continue indefinitely.
  4. Trastuzumab (Herceptin) and Pertuzumab (Perjeta) will start with the chemo, and will also continue indefinitely, as IV drugs. Oh, and he said the pertuzumab first time round tends to cause havoc with stomach…
  5. The Zoladex injections I’ve been told to not have any more, and to stop taking the Exemastane the week before chemo starts. It is likely that when I’m halfway through the chemotherapy I’ll be referred to start the process for an oophorectormy, to be undertaken around 2 months after the chemo finishes. *So that’s one less appointment each month!
  6. Double checked this study about tracers in the bone but not seen as relevant for now.

And I’ll next see Dr C in about 2 months, as if the chemotherapy date changes, he’ll just alter the prescriptions. Very much enjoyed a visit from Karen this evening to chill out over some food!

Categories
Cancer

[CANCER] “Final” Oncologist appointment: what’s going to happen after #Chemotherapy? #BreastCancer

So, yesterday was my last meeting with the oncologist as tomorrow I start CYCLE 6 of chemo (the last cycle – excited beeps from me)! As I’ve been cold capping, I’ve not been able to wash my hair frequently, and yesterday wasn’t a day for hair-washing – I debated just leaving it like this when I got up (well, you know, we should be celebrating that the cold cap is clearly working [rather than the 20-50% of hair that people expect to lose, I seem to have lost none]:

Checking Bloods

Before every chemotherapy I’ve had to have blood tests, to check that I’ve enough a white blood cells to fight infection (if I’m worried about neutropenia, I should have been picked up before this, as I have to monitor my temperature frequently, and if I feel rough, call in to the 24-hour chemo line, or an ambulance if necessary)… otherwise putting cytotoxic drugs (yes, chemo is literally poison) in does not happen.

My hair looks, erm, lovely, as I’m waiting for bloods:

Bloods & oncologist meeting #cancerlife #chemotherapy

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This photo was taken before my port refused to work (after 4 successful flushes, it still wouldn’t give blood), and before there were then 4 attempts (the fourth successful, thankfully) to take blood via needle from my arm (this is why I have a port!), leaving a number of bruises, and one rather tearful Bex:

Oncologist Chat

The meeting’s with the oncologist are always rather swift (though I went in 10 mins before my appointment time!). We both cheered the fact that this is cycle 6/6, so only 3 more chemo chair sessions to go! If I’d been on Docetaxol I’d be celebrating my final chemo tomorrow, but I’m not – Paclitaxel is dosed and spread out over 3 weeks!

He wanted to check no new/concerning symptoms, so we can carry on as planned. We also discussed what happens afterwards (he’ll be my oncologist for radiotherapy too, so I’ll await another letter in the post)…

Port Removal

When my port was put in on 1st December, there was discussion as to whether it would stay in longer-term because I’m difficult to get blood from (and almost impossible to cannulate), which would still require me to have it flushed every 4-6 weeks. I wondered about this, but the port has been a little temperamental the last couple of weeks, and twisted a little bit. The oncologist said “why would you want to keep it in, you’ve finished your treatment”, which to me was quite a cheering statement! That’s coming out on 10th April … more local anaesthetic, and another week of bruising.

I’ll need to have bloods taken that morning to ensure I’m not neutropenic. They reckon 10 days is long enough if that’s going to happen, and so – off it goes! Just hope it behaves for the next 3 blood tests/chemo sessions!

Here’s the port, with it’s needle + tube inserted (inserted for bloods, left in for chemo … you can see on this blog post how the port/needle works) … but once it’s out, it should just leave a scar about an inch or so (which compared to all the scars on my left… and I know I’ve shared a lot, but scar pics unlikely – so Cosmopolitan gives an idea)

Radiotherapy

I’ve now gone into the queue for radiotherapy. They originally said 2-3 weeks after chemo, but 3-4 weeks were mentioned. I guess it’ll be as soon as it is! I’ll get an appointment to get ‘tattoos‘ to identify where I’ll need to have the radiotherapy beams – that’ll take a couple of hours (all being well), and then the following week (although it says not usually starting on a Monday), I’ll have to go in for 15 minutes each day (machinery/enough staff permitting) for 3 weeks to be directed at my chest wall/lymph node area (think he may have said around the throat). I was given a pamphlet to read at my last appointment (largely this content) to ensure I understood, and then to ask any questions. I’m not feeling too worried about radiotherapy – think the actual happening is a bit of a non-event so long as I can lie still and hold my breath for long enough … the fatigue afterwards though is going to be fun, added onto the cumulative fatigue from chemo! At a previous consultation, one of the oncologist’s registrars said around 8 weeks to get over radiotherapy fatigue, whilst the other said that no one knows who is going to have longer-term fatigue until after treatment ends…. I’ve been seeking to keep myself active in between each treatment, even if we’re down to about 5-6,000 steps on a good day now (with frequent rests!).

<edit> Ooo, someone’s posted a video of the set-up before the machine fires live beams for radiotherapy.

Oestrogen Suppression

There’s apparently something called the ‘oestrogen suppression team’, which just makes me giggle! I will first meet with my GP (not that I ever see the same GP twice!) to be prescribed Tamoxifen (for which I was given a Macmillan print-out), an oestrogen-suppressant (as my cancer is fuelled by that hormone). I thought I was going to be on that for 10 years, but asked about something I’d seen others having – and oh, I’m having that too (oncologist says we deal with one thing at a time… but would quite like to know what to prepare my head for!).

I will be having Zoladex injections alongside the tamoxifen – all I know from the others in cancer groups is don’t look at the needle because apparently it’s massive. Think it gets injected into the stomach at the GP practice – initially monthly, then possibly onto 3 monthly once it’s clear body is coping with it. I’m not sure how long this is for – maybe a couple of years which is when they then declare that the menopause has been successful (hurrah, because chemically induced, it’s supposed to be extra-harsh).

Apparently I’ll then move to Anastrazole: again, I don’t know how long for, so that’ll be early questions for the ‘oestrogen suppression team’!

Psycho-Oncologist

The other thing that is happening is that I have a referral to a psycho-oncologist at the Christie, who I’m meeting on 3rd April (Dr Tania Hawthorn). It’s apparently common as you come to the end of the merry-go-round of cancer treatments, where you’re seeing medical staff very frequently and able to ask lots of questions, to start to worry more, and there’s a particular fear (especially around scanxiety time) of recurrence which it seems worth talking through how to manage. Non of the medics will ever promise you that a recurrence can’t happen, and they see their job as improving your odds of not getting one. Officially I have been NED since my surgery, and everything else is to blast any stray cancer cells that might have escaped …

Oh, and I’ve also sent off a form to a lifestyle/activity person who’s used to dealing with cancer patients, about how to get back to a useful level of activity and movement from where I am currently…

SO – look out for another photo from my Instagram tomorrow as we tick off another chemo chair session!