Tag: Cancer

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Cancer

2020: What a year… and a CANCER update!

Like many, I’m looking forward to time moving forward, and hopefully emerging (once vaccinated) into some kind of resemblances of a more liveable life. Having been taught that time is a social construct, I don’t expect things to change on the stroke of midnight however (it’s also one of the reasons I’ve never done New Year’s Resolutions – also, they are set up to fail, and if I want to try something new, I’ll do it when I’m ready, not when the clock dictates). Maybe that’s why I was pretty relaxed about Christmas this year (as 2/3 previous year’s Christmas have been messed up by cancer, so…)

A Cancer Update

I last blogged maybe 3 weeks ago (though feels like months ago).

  • I had another paclitaxel (reduced dose) treatment, number 17/18, then had a week off for Christmas (nice to have a week without some of the side effects, though fatigue doesn’t really go anywhere).
  • I’ve spoken to my counsellor at the Christies, my Macmillan nurse, and joined the Maggies Young Women’s group.
  • I’ve spoken to the ENT specialist re bloody noses – the Naseptin seems to be doing its job and now leaving paclitaxel, may no longer be a problem.
  • I’ve spoken to Occupational Health and various people at work, more about that will emerge… (prayers particularly appreciated)
  • I’ve had an echocardiogram, and my heart seems to be working OK (drugs I’ve been on could have damaged it)

This week’s fun

This Tuesday I headed to the Laurel Suite to have treatment number 18, but had to report that puffiness and breathlessness in my body had been getting worse since around Christmas Eve (though already noticeable for a few weeks), although my face had not swollen (like in July). Although I chucked my scales out years ago for the sake of my mental health, I get weighed every time so the right dosage can be dispensed… and along with going up around 1kg per week for previous 5-6 weeks, this time 5kg in 2 weeks … I don’t do the whole Christmas ‘eat yourself sick’ so it’s fluid weight that is going on. Again, after conversations with the acute oncology nurse, and an on-call oncologist (both via phone), with concerns that it could be a blood clot (though unlikely because of blood thinners), or a tumour growth/obstruction, I was sent to ACU to await more tests. And again, they can’t use my port, so, once I’d had an x-ray (to see what pleural effusion is up to) and they decided I needed a CT scan, after 6 attempts, cannula got in (yes, I cried, though once in, much less painful that previous ones – they’ve decided they can use my left arm now). Thankfully the CT scan ended up being the last one of the day, and the radiographer wanted to get home, so wrote the report up swiftly. I was in the Laurel Suite 11-2.30, then on the ACU til gone 9pm – very tired:

 

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The results came back as not a clot, and not a tumour growth – so – and this is basically the scan I was due to have on 9th has now been done – I guess we can say I’m a ‘stable mable’ (which I should probably be a lot more excited about than I am – as one of my nurses said, I’ve had so many side effect problems, I don’t really believe it). It is thought that I now have lymphedema in my right arm (whereas my left arm – where all lymph nodes removed – has recovered from this entirely), and across my chest – quite uncomfortable, but need to work on massaging the fluid back into where it’s supposed to be. I emailed my Secondary Breast Care Nurse (SBCN) yesterday to update, as she can liaise with my oncologist (who hopefully I will speak to soon), and she has now already referred me to the lymphedema service!

What’s next?

The decision is to abandon the 18th paclitaxel – officially I guess it still sits on the list of drugs I could return to, but it’s given my body a complete hammering. I will go back onto the oncology ward on Monday and consent to starting capecitabine (usually have to accept that death is a possible side effect of the drugs), have bloods taken, chat to pharmacist, then be sent home with tablet chemo. Should my body be OK with the drug (and I’ve had a DYPD test, which identifies those with terrible responses, and mine are fine), then I will take it for 2 weeks, have a week off the tablets, then go in for another blood test, and continue the routine every 3 weeks, with denosumab every 6 weeks. Looking online the length of time people get can be a few weeks, to many years, so I guess we wait and see. Side-effects are also ‘wait and see’, though fatigue, hand and foot syndrome, and stomach issues sound highly common – woo hoo…

Yesterday, I also joined my ‘new’ friend Jo’s funeral online … another friend Jo has just written on her anger around this for METUPUK.

Some things to be thankful for

I’m sure I’ll think of more and sneak back to add to the list… for now working from my diary, which has a load of things in it that DIDN’T happen, as for many… and of course throughout Andrew and Jane have been core to my bubble of support locally!

  • January: Was in recovery from my oophorectomy: got to spend a lovely week in Rosie’s Barn, and have a belated Christmas with my parents.
  • February: Managed a weekend in Munich, and a gentle ‘return to work’, whilst I packed my bags for New Zealand.
  • March/April: Managing to get to New Zealand, even if I got locked down and missed out on nearly all my planned activities, and rattled around a building for 40 – it was next to a lovely beach (oh, I miss the swimming), I was well looked after, and I had the Timas as my lovely lockdown family – and lots of other people to talk to online (both in NZ and elsewhere, including being able to join churches) *and lockdown didn’t happen til after my birthday. Although COVID meant that I didn’t get checked over personally, I had several good interactions with New Zealand medics about various pains, and getting repeat prescriptions – but was sent home with the thought that the serious chest pains were ‘just pulled muscles’. Wrote my chapter for The Distanced Church.
  • May: Managed to get a consulate flight back to the UK (including a business class seat, so SOME sleep), where Andrew and Jane had made sure my car was MoT’d, and that house was ready for me to come back to, and my Mum had sent a big box of Cook meals. We made lots of progress on our NIHR bid, I joined webinars and counselling online, managed to get some food delivered, and completed a draft of my autoethnography academic article on cancer/digital (triggered by a free online writing retreat with Helen Sword).
  • June: I finally got my (belated) CT scan with contrast, and also joined the faculty writing retreat (online), made some progress on my second edition of Raising Children in a Digital Age (which I’d been working on in New Zealand, but spent most of my time talking to medics and the consulate, trying to get home). I was due to go to Paris for 2 days, but hopefully those tickets will be valid for longer than the 12 months they said…! Wrote final report as external examiner for Staffs Uni.
  • July: Kim and I worked on our eNurture bid, another bid on social media and cancer went into NIHR, I went on some socially distanced walks as the GP said that was OK (with masks), ended up in hospital with new tumours in sternum/mediastinal mass – super thankful for the NHS (much as I didn’t want to stay in) for being quick in working out what was going on, then treating me immediately. Thankful that I have good sick pay from my job, as expect to be off for a while from this point.
  • August: Not a fun month – radiotherapy, started paclitaxel, once again – thankful for the NHS, and from the ongoing support from people online, offline – most particularly my Mum, and through the medium of postal parcels! Also got to do some interviews on BBC Radio 5/BBC Radio 4/BBC Radio Manchester re cancer/COVID.
  • September: Mostly thankful for people, including my medical team, people online/offline, and those who joined my #BexParty – which I do plan to do more of .. isn’t it brilliant how tech keeps us connected! Cousin came to stay, and managed to meet other cousins at Tatton Park. Also, around this time, my cleaner was able to return and help me out again… Kim and I got our ENurture bid in.
  • October: Had a CT scan (stable), and my awning and patio heater arrived/were fitted (for all those people who can come and sit in the back garden – oh, not allowed to do that, oh well)… Enjoyed the CofE Digital Conference.
  • November: Spoke at the Premier Digital Conference, joined lot of online chats, another day in hospital being scanned = pleural effusion. Learning how to let go of the need to get things ‘right’ and having a go at my #OpinionMinute on Tik-Tok
  • December: Been lots of chats with people, online and offline, lots of medical interventions (as per cancer blogs). Over Christmas/New Year, Hannah has been staying (having isolated, had a negative COVID test, and got an empty train) which has been lovely company (as well as she’s doing most of the cooking). We made it to Dunham Massey Christmas (bit freaked out by busy-ness, but the lights were lovely), and we did an online Harry Potter experience (Hannah is now onto book 5, having never read any), and had lovely Christmas with A&J.

And of course thankful for all the entertainment that has been available online via Netflix, Disney +, Amazon Prime – though I would like to get back into theatres and see The Cursed Child, which I had tickets for in Melbourne!

For now, need to (belatedly) get dressed, have a little walk, and prep for the fact that we’re doing midnight at 9pm (we’ll just pretend we’re in Uganda, right?), including a little pre-9pm-zoom with people!

Selfie a Day (made later in the evening, added to post NY Day)

Made with the Selfie a Day app

2021 Please:

Featured Image Photo by Immo Wegmann on Unsplash

Categories
Media & Press Media - Audio

[MEDIA] Talking Hope and Grief with @HopefulActivism Podcast

Last week I spoke to Abigail Thomas – it was a lovely conversation – and has been added to this wonderful podcast ‘The Hopeful Activists‘:

Categories
Cancer

[CANCER] Scan Results Are Back .. and the tumours have shrunk.

I posted on Friday that I was expecting scan results next Wednesday (28th), but that my nurses yesterday (who can’t interpret/return the results) could see that they were on the system, so emailed my oncologist to ask if I could have the results any earlier. I missed two ‘no caller ID’ calls last night, and another this morning, but managed to feel my phone going off when out on my walk (4km+ today, I started today 2km behind, so that’s 0.9km caught up with)..

Anyway, on Saturday managed to find a table at an outside pub that ‘felt safe’ and met with a friend, Sunday, after Zoom church, went back to Abney Hall with my bubble, and Monday was treatment day… (number 11/18, likely ongoing ‘if working’).

Oncologist’s Call

I recognised Dr Chittalia’s voice as soon as he rang, and thankful to him for putting me out of my scanxiety sooner than next week. It’s was a fairly simple call

  • The tumour(s) have shrunk – which is the best news (a lot of Stage IV-ers will settle for being a ‘Stable Mabel’ aka it hasn’t got any worse) – any improvement is good. It’s not NEAD as active tumours can be seen, but it seems that the drugs I’m on are doing something positive (despite all the miserable side effects).
  • As it is working, we are likely to continue with this ‘until the toxity of the drug is unmanageable’, though we can have a dose reduction (there are not endless options for treatment, so we want to keep the ones that are working – keep working). EDIT: Talking to others, getting 18-24 months on this drug sounds like it seems a good run…
  • So 18 weeks is 7th December, but it is most likely that we will continue this treatment ongoing … I have another telephone appointment with Dr C on 2nd December – so no scan promised there, but likely probably January? So, keeping work in the loop about how might be possible to head back to work early-mid January (having made the most of my full sick pay entitlement for once).
  • I asked for the scan/report to be sent, and may see if I can see any from earlier (am entitled to them, but worry about making extra work, but if they are helpful…!). I’ve had a quick look at it and in many ways it seems good (not sure I understand it all), but one of my tumours was 8.something-cm – which as I was NEAD last November is frighteningly large/fast!

Call the GP

I’m just waiting for a video appointment on Push Dr with the GP, as oncology team want me to get a referral to:

  • ENT (missing nasal hair = bloody nose every day = super sore throat for 4-5 weeks (so far), and since Saturday my voice is largely disappearing. I’m sure on this drug last time I had to be referred to ENT for tinnitus (I also had a bloody nose but wasn’t as severe as now).
  • Dermatology – aside from the constant rash/breakouts on my face, my arms/hands have now joined with painful, itchy, peeling rashes… (topical creams, antihistamines, and antibiotics, sometimes steroid cream have been the big weapons here)…
  • Low Blood Pressure – over the last 5-6 weeks we have struggled to get a ‘good’ reading from the machine, so end up with a manual reading … yesterday the best reading we could get the beginning of the session was 98/55. I usually drink at least 2 bottles of water during treatment, but pushed to 3 yesterday, and at the end it was 112/66 which is closer to OK, but still…. I do occasionally get those head-rush moments if I move too fast…

And whilst I was writing that, that video appointment happened:

  • ENT referral in process (although was confused as to why oncologist hadn’t done this directly), and remember to use the Naseptin I have left over from previous chemos … Otherwise I said I am eating lots of boiled sweets to keep things soothed.. I did remember this morning that I have a Difflam spray and need to check if that is any good (2.5 years after I last used it)… EDIT: Hmm, it expired 04/20
  • Tomorrow I can head to the pharmacy (again) for a steroid cream for my arms (on top of the Epaderm the pharmacy gave me yesterday) – we’re starting with the mild version, but if no improvement within a week, get back in touch… and don’t leave Aqueous cream on it (rare side effect?).
  • Not a great deal of treatments for low blood pressure – keep the fluids up, add some more salt in (mmm crisps), keep legs raised more of the time (I’m doing quite well on that in my bed, but I might push the base to a steeper angle)… otherwise if it gets bad tend to be hospitalised for IV fluids so …

Managing Nausea?

It’s useful sometimes for me to keep track of where I’m at as we keep trying different things – but getting on top the nausea has been key – so last week was ondansetron for 48 hours (which requires Laxido – chemo may speed things up, this certainly bungs them up), dexamethasone for 1.5 days post-treatment, 2.5 days under consideration for the energy boost (which requires lansoprazole and gaviscon for the associated heartburn, and possibly sleeping tablets for the ‘Dexy’s Midnight Runners’ effect), and cyclizine 3 x day preventatively. As I didn’t feel sick at all last week – we’re trying without the cyclizine (and it’s accompanying sleepiness) this week – and we’ll see! The haloperidol – we found some – but it’s off to the side for days when nausea may hit..

What Else?

So, what else, sometimes it’s useful to keep track… most spaces in my house look like a pharmacy is gradually creeping in .. trying to find the balance between tucking things away, and not creating extra work in having to get things out several times a day …

  • I will be on twice daily (stomach) injections as blood thinners til at least 26th January
  • I have morphine, which I tend to take 5mg at night, to help sleep
  • I take calcium and vitamin D tablets twice a day
  • I have Duraphat 5000ppm toothpaste for sensitive teeth
  • I have many different creams for many different things – esp Aveeno, Dublebase, Aloe Vera, Pliazon to try and keep skin supple EDIT: – and treat the radiation burn on my back (3 x day with a long handled foam applicator).
  • I was on pregabalin for nerve pain … turned my head to mush, so although I can feel some ‘bruising’ around my sternum, it’s better than the head mush. Amitriptyline has been offered as a substitute (to take one at night = help sleep too), but resisting that this week..
  • I managed to come off all my Ibuprofen and Paracetamol that I was on for couple of months post hospital admission
  • I am on 30mg of citalopram – was on 20mg for years.. 40mg is still available!
  • I have to take cotrimoxazole 3 days a week
  • At present I have OTC  evening primrose oil, fish oils and glucosamine (had to stop probiotics with chemo) – and some magnesium spray.
  • I had to stop the exemestane when I stopped being ‘triple positive’ and became ‘triple negative’ – it works on oestrogen…
  • Thankfully, flucloxacillin has finished – for now … as my toe has been dealt with!
Categories
Media & Press Media - Audio

[MEDIA] Conversation with @BeckyWant on @BBCRadioManc re Cancer and COVID (and Week 4 of Treatment)

As you may be aware, including from my BBC Radio 5 and BBC Radio 4 programmes, one of many things that has been disrupted by coronavirus, is cancer treatment – both initial diagnostics, and the ongoing treatment for those of us with incurable cancer …

Breakfast Show, BBC Radio Manchester

Anyway, Friday morning, I was up early to chat to Becky Want (and immediately fell asleep again) at just after 7:10am (go to 1:11, through to around 1:17):

#StageIVNeedsMore

The campaign still seems to be focusing a lot on primary diagnostics, but as you see what my friend Jo has been dealing with:

My Week

Last week I was en route to spend Greenbelt with my bubble family, which we enjoyed, and I got home in time to do ‘beer’ and hymns from bed! Returned on Sunday for ‘The Big Picnic’, which also happened to be 3 years since my first diagnosis of primary breast cancer, added my drawing of ‘dreams‘; and headed for a socially distanced/masked walk with Lee. Monday was bank hols, which I mostly napped and made chocolate mousse... before heading in for treatment on Tuesday:

 

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Here we are – Paclitaxel No 4. #WaitingRoomFeet #BusyLivingWithMets #StageIVNeedsMore

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Onto Wednesday with a bit more sorting and napping (and an unexpected phone check-in from my oncologist, who wants to me to visit for a check-in about 4-weeks), plus a big Zoom-chat, Thursday my cleaner came for the first time since February, and Andrew and Jane came for mousse! Friday/Sat was a little more tidying, another Zoom, and today I’ve mostly been watching ‘Away’, whilst trying to get my head out of it’s fed-up with drifting hair, skin breakouts, stomach malfunctions, never feeling like I have any energy – I really hope this treatment eases over time … not sure that’s a thing though!

Anyway, onto the last episode of ‘Away’ … and it’s treatment time again tomorrow…

Categories
Cancer Media & Press Media - Audio

[CANCER/MEDIA] Talking with @StephenNolan, @SaraBainbridge, @NicMurray & @larba74 about Cancer and COVID.

Last night I spoke to Stephen Nolan, along with Sara Bainbridge from Macmillan, and fellow cancer patients Lara Montgomery and Nic Murray (we largely spoke in that order, although there’s a bit of interjection), about what it has been like to undergo cancer treatment/progression whilst the pandemic continues, how it has affected diagnostics and treatment, and ultimately, the potential impact upon our prognosis. The interview starts at 31:20, through til 1:00:42 – and although we did it as a pre-record about 45 minutes before the show, it’s largely used ‘as is’.

I’d been contacted Thursday about the potential for this, and was rung around 90 minutes before we recorded by another producer to talk about how I was doing, if I was feeling fit for it, a recognition that it’s a personal topic and might be hard, so the pre-record gives the opportunity to stop and re-set as needed. Really nice to get that reassurance too…

I always do a bit of pre-thinking … things I thought about saying (and as you’ll hear, the questions don’t necessarily go that way – hence why I like to have options):

  • Being in NZ for COVID/getting home (and the delays that caused)
  • Delays in scans because stuck overseas/non-urgent, pressures on hospitals to take ‘safe’ procedures’ so less people getting stuff
  • Not being able to take anyone into appts and being given crap news on your own ..
  • The measures hospitals are taking (PPE/limited visitors/ongoing testing) to keep us safe … lots of plastic sheeting everywhere *and yes, I could have mentioned the mask for hospitalisation … !
  • The care that staff still give – and the Christie saying not expecting any changes in procedure til Spring earliest.. though get the majority of my treatment at Christie outpost at Stepping Hill Hospital.
  • Cold-capped before – not even an option for many now, and psychologically not for me now – so might lose my hair this time
  • The suspension of lots of cancer research trials meaning likely to be less options + loss of funding to charities similar impact.
  • Within breast cancer around 30% will end up with secondaries – but that only around 12% of research funding goes into targeted treatments (but then other cancers may have even less…) …
  • I wanted to get across METUP-UK aims and objectives in some form: METUP-UK – one of patient advocacy groups fighting for better policies around treatment (e.g. NICE says can’t have x treatment if have had y treatment, although may have been proven to work overseas, and could buy someone another 2+ years), better data collection … along with better knowledge of metastatic cancer (people want to skip out of primary treatment believing it’s all done), and support for secondaries patients who can feel written off…… and this was pre-COVID! Do know people whose treatment was suspended and got progression … *could say same with me, but at least I got to go to NZ!
  • Support groups such as Stage 4 Deserves More, Make 2nds Count, Secondary1st, and YBCN for inoperable… and hopes for an NIHR bid looking at social media/cancer so people can access better info & interact better…; BRiC Centre – Building Resilience in Breast Cancer Centre – undertaken research demonstrating the mental health impact on women – of delays, lack of scans, etc
  • Saw someone else who was advertised as ‘losing their battle’ today – not a fan! It’s ALWAYS in the papers … as #YouMeBigC – another Radio 5 programme did a whole episode on … the metaphors say a lot.. and put a lot of pressure on the individual to be positive, etc..
  • The way that the Nolan sisters cancer was reported (they have metastatic, incurable cancer, not ‘spine cancer’ or whatever, and they may get 30+ years, or, the average (recognising averages are a mess) is 2-3 years – with ongoing treatment.
  • The poor data collection – so primaries/secondaries not necessarily counted separately.
  • The impact of shielding – SD walks for mental health, missing my wild swimming … but people rallying around to deliver things and the joy of zoom etc ..
  • Worries that Covid is going to stop seeing people/travel… what happens if I don’t get well – plans for back yard but not same ..
  • Missing my cleaner = when energy levels low .. though she is about to restart, with lots of PPE
  • Ironically easier to get through to the GP it feels at present with telemedicine, inc a video call – though keen for balance with f2f!
  • The distance from family – my mum travelling 5+ hours to come and help out ..
  • The challenge of relying on public transport/ambulance service at present … with compromised immune systems (and all those people wearing masks on their chins)
  • People not being able to get certain brands or quantities of drugs .. though that may be more Brexit
  • Confusion over shielding and being able to work … vulnerability … no clear message
  • Some difficulties remain the same … others are unique to Covid!

If you’re looking for my latest cancer update, it’s here.