Categories
Cancer

[CANCER] Progress with Capecitabine, and appointment for Lymphedema

Well, this past week or so has gone both fast and slow since I started the Capecitabine… My cousin, who has been cooking, cleaning, etc. for me, had to go back to London after 3 weeks – but has made such a difference having support as try and adjust to this new treatment! We’re keeping an eye on when vaccines might make a difference, or again, she will isolate, test, and travel at quiet time, to come back and give some support. Good for both of us mental health wise…

Capecitabine: A week + in

Capecitabine TabletsSo, capecitabine is a tablet-based chemotherapy. Assuming that I can manage the side-effects, and that scans show that the treatment is keeping me stable (or even better, shrinking tumours), then every 3 weeks I will return to the oncology unit, have my bloods taken, talk to the pharmacy team about the side effects and how we can manage them, take the tablets home (as I’m a trusted long-term patient, I can be called up if there’s a problem with my bloods, and not have to sit on the ward FOR AGES). I will then take the tablets for 14 days, then have a 7 day break from having the tablets (be interesting to see if the side-effects ease off for that week). Alternate weeks I will have to wait on the oncology ward for blood test results anyway (usually take 60-90 minutes) as I will then have my denosumab injection.

You can see the tablets illustrated here – 4 each morning (9.30am) and evening (7.30pm). They have to be taken a minimum of 10 hours apart, though can be up to 12 hours apart… and must have eaten within the previous half-hour (a friend who’s on the drugs has just said ‘carbs are your friend’ and that a crumpet works well for her!). The pharmacist said – because it takes some time to get out of bed these days – that I can keep some biscuits by the bed and use those in the morning. I do try and have some ‘proper’ meals in the rest of the day – and continue my attempts to ‘eat the rainbow’.

To be honest, it’s been hard to eat at all at some points (and other points get the munchies, even without any steroids) – the Tuesday I started the medication, I just felt a little drowsy, but the Wednesday I started to feel really nauseous/tired, though I was still doing bits and pieces – but avoiding rich food! Saturday we planned to pop out for a walk, but I abandoned my porridge halfway through, and lay down – and then another 4-5 hours of the day disappeared. I thought I’d managed dinner, but just after taking my late-evening tablets (2+ hours after taking capecitabine, so hopefully I ingested that properly), I was actually sick (bright purple, no idea what caused that)… thankfully that’s been the only time so far. Sunday I sent my cousin back to London. I’ve had a lot of conversations with my Macmillan nurse – as we try and control the nausea, shoulder pain, breathlessness (which was paclitaxel related, we thought, but it’s not improving) – and whatever other symptoms need managing. I hope we find a way to manage it all better – because it’s largely hard work at the moment!

Meantime – this Instagram post totally resonated with me … officially it’s 2 years since my first secondary tumour was found, although they think it had been there for 18 months before that… now it’s been 6 months since the large tumour was found … which is definitely causing some problems!

Lymphedema Appointment

Wednesday morning, I headed into The Christie rehabilitation department … by the time I’d walked from the car I was very breathless, so a wheelchair was offered to get me across the hospital – for once, I said yes…

 

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This is not my first trip to a lymphedema clinic, so I wasn’t too surprised at how low tech the process was (and we chatted about this) – the low tech means it’s pretty skilled! After we’d had a chat – which interestingly started with “can you tell me where you think the tumours are in your body” – not because she didn’t know, but she wanted to know if I knew… especially as she’s pretty certain that my swollen arm is caused by a tumour in my right armpit (which has shown up on previous scans) – doesn’t need to be big, just in the wrong place, to cause problems.
I had noted over several weeks since November that I seemed to be collecting fluid in my right breast, my chest, and then on Boxing Day it started showing up in my right arm. I get weighed weekly at treatment so that they can dispense the right amount … I used to avoid knowing, but since the summer (when I lost 10kg of fluid when my tumour was treated), I’m seeing it as a source of data. November onwards I was putting on a kg each week, then over Christmas 5kg – and – no – I don’t do the whole stuff myself silly thing at Christmas… but by this point everyone else could see it in my arm. This was pretty much what it looked like the evening before the appointment (by which point I’m seriously having trouble stretching/ reaching with this arm, including problems with getting clothes on/off):
So, the appointment:
  • Measurements were taken with a tape measure. A computer will do a calculation to work out the difference (but it wasn’t working, so next time). I did say to her that the swelling had been even worse – she said it’s a good sign it had started to reduce…
  • Further measurements were taken so that a custom fit sleeve can be ordered (black or beige, madam? black please). I’ll need to go into the Christie to collect it, usually within a week, but COVID means may be a bit of a delay. I had been wearing the sleeve I had for my left arm, but apparently this is totally the wrong size, and making things worse.. and the silicone on the previous ones had caused issues, so they’ll have to find another way to keep it up. I’ll be entitled to 2 sleeves every 6 months, as they stop being effective after this. She said it will look harder to get on, but should actually be manageable (as I have to get it on myself)… and hopefully start to be effective.
  • We’re also hoping that the capecitabine will shrink the armpit tumour, although the paclitaxel hasn’t. I asked again about radiotherapy, and she agreed that it would make the lymphedema worse.
  • Told to keep the arm as supported as possible with cushions, etc. whilst sitting, sleeping and walking (e.g. hand in pocket, or supported by a big scarf, a bit like a sling). The weight of the arm is putting pressure on the neck and giving me a weird gait when walking = discomfort.
  • When sitting, told to try and keep flexing the hand and getting some arm movement – keep the blood moving… and also to keep the areas highly moisturised with e.g. Aveeno.
  • Struggling to get a bra on (especially with the weight of the prosthesis in it) – but she said keep trying – as want to keep that as supported as possible.
  • Wheat bags and heat pad are fine – might increase the lymphedema, but if it’s working for pain relief. Give areas some heat-free time though.
  • Due to COVID physio/massage, etc. can’t be offered at the moment (there’s people been waiting for this for months) – but she did say there were doubts about how effective it would be for me – as normally arm lymphedema is pushed towards the chest – but I have fluid on my chest – so it would need to be massaged towards my back…
  • Focus on breathing exercises – described it as ‘like a balloon’ – hand just under bra line – feel it inflate as breathe in, deflate as breathe out … and do not be breathing from the shoulders (which it appears I am doing!)

She said that they may not be able to remove all of it, but if we can remove the (extreme) discomfort, and get a range of movement back, then that at least helps. The physio is not convinced that the pressure on the neck is contributing to the nausea at all… although there is also a knot in my shoulder which massage has definitely eased – and that’s also pulling on my neck…

So, I left Christies – where excitingly – all staff should be vaccinated by the end of (this/next?) week – and went home to rest on the sofa (so tired, and also had an HR/Welfare meeting that afternoon).

Managing Multiple Appointments

I seem to be speaking to multiple medics, including new medics, so I spent much of Sunday/Monday writing up a ‘patient history’ as a Word doc – so I have got easy access to dates of different diagnoses/treatments, medications I am/have taken, who I see… and a list of known appointments/current questions – because I am getting totally lost and being asked the questions over & over! Now though, I can print whatever is up to date off (or email it, for those who are in the 21stC), and take it to appointments. Might take some reading on the first appointment, then it’s just about checking later updates. The lymphedema specialist asked if she could keep it, and said ‘good idea’, and my Macmillan nurse has found it helpful so far so… It will next get used for discussion with Secondary Nurse on Monday, palliative/pain management clinic Wednesday, and I’m in the queue for an OT appts too – in case I need some adaptive equipment. Thankfully we managed to sign off ENT yesterday as no longer having nose bleeds and my voice has stopped being ‘stretched’. I don’t know about you, but it’s all pretty exhausting … and I don’t even feel like I’m ‘achieving’ that much .. and it’s all very well people saying ‘you don’t need to’ – but check out my top strength in Marcus Buckingham’s ‘strengths finder’ which I always thought was pretty spot on! Anyways, time for bed again…

P.S. The vaguely exciting thing is that both my hair and my nails are starting to recover from paclitaxel. My left hand also seems to have largely recovered from peripheral neuropathy – right is still plagued because of the lymphedema I think!

Categories
Cancer

[CANCER] Participation in Trials

Within the last 3.5 years, I have been involved in a a number of cancer-related trials (clinical trials and quality of life trails are both important):

Optima

This trial is looking at testing tissue samples to try and find if you might benefit from having chemotherapy to treat your breast cancer: there is a sense that chemotherapy is over-prescribed, so the hope is that less people will need to have it. It gave me a 25% chance of skipping chemotherapy, although did end up delaying the start of chemotherapy by a couple of weeks – the waiting was exhausting (but obviously I still wanted to feed into the research for future patients, so held tight!). The trial was a double-blind trial so I’ll never know if I was in the 50% who was told to ‘continue with the plan developed by the oncologist’ (the control arm), or the 50% who had my tumour tested, and it determined that I would need the chemotherapy.

This was a really simple trial to be involved in, with no input from me at the beginning except agreeing to having the tumour tissue that had been taken at biopsy/mastectomy stage to be reused for testing. 3 months, 6 months, 12,24 and 36 months later, I then had to fill in a questionnaire as to whether there had been any progression, any ongoing side effects, and a sense of the time and cost that I had had to pay (e.g. petrol/parking).

Trial website

SRS @ The Christie

I was invited to join a trial at The Christie when my spinal metastases were identified. This would have given me a 50% chance of having stereotactic radiotherapy – previously used largely for brain, but now an opportunity for a small number of tumours of a small size (3 under 3cm) on the spine:

Stereotactic radiotherapy (SRT) gives radiotherapy from many different angles around the body. The beams meet at the tumour. This means the tumour receives a high dose of radiation and the tissues around it receive a much lower dose. This lowers the risk of side effects. Usually you have between 1 and 8 treatments. Cancer Research UK.

When I came to sign up for the trial, it was full, though I would still have been permitted to join it, but there was also a programme ongoing through The Christie itself which meant that I could definitely have SRS without being part of the trial. So, I went ahead – with a planning session, a stressful (unsuccessful) first session, then 3 very successful treatments welded into place with a customised head cage .. the scan afterwards demonstrated that I was NEAD (No Evidence of Active Disease).

Website information

LIBERATE

Developed by Breast Cancer Now and University of Leeds, this website is designed to help those with secondary breast cancer to access quality information, find out about support groups, and also monitor symptoms such as fatigue, bowel habits, nail effects, mental health, etc (largely for patient use to feed into their medical team, as I understand it).

For the purposes of the trial, once a week for 12 weeks, we completed the monitoring survey, and submitted (if wanted a copy of own form, needed to manually add email address so could be sent, so everything truly anonymised). I also fed back some thoughts about the structure/interactivity of the website (because of my specific professional training). I will also be participating in a 30-60 minute phone interview next week with the team, to aid as they seek to get the material to a publishable stage.

Trial Website

CELEBRATE

Undertaken by Sheffield Hallam Radiotherapy Department: ‘CommEmorating the Last Event, calling time on the end of treatment Bell following RAdioThErapy: The CELEBRATE study’ questions what is happening when patients use ‘End of Treatment Bells’, and whether it’s time to remove them from UK hospitals. See my video from that evening:

@drbexlAnother ##OpinionMinute – no leaks from the focus group, but the kind of thinking I went into it with – re ##EndOfTreatmentBell

? original sound – Bex Lewis

SafeFit

The most recent trial which I have agreed to participate in (so long as oncologist signs me off as medically fit for it) is this new study, which recognises that COVID-19 has interfered with the movement and nutrition aspects of cancer patients lives. Research demonstrates that keeping moving and eating nourishing food does have a positive impact upon cancer patient outcomes – although very much at a time when patients are dealing with fatigue, low energy, and this doesn’t necessarily feel top of the pile. So far, I have had a conversation with one of the team, been sent some questionnaires to complete – when my oncologist is happy (re breathing, lymphedema, etc.) then I can be partnered with a trainer, who will engage (online) with me, 3 x week for first month, then decreasing frequency until final month is just one session (in the hope that will have embedded the learning in everyday lives.

Trial Website

I definitely need to keep an eye out for clinical trials – they are desperately needed for secondary patients who have run through the regular treatment options!

Featured Photo by Emily Morter on Unsplash

Categories
Cancer

[CANCER] Time to Start Capecitabine

It’s not even a week since I updated about my cancer situation, but here’s a little more information.

Capecitabine is a type of chemotherapy called an anti metabolite. The body changes capecitabine into a common chemotherapy drug called fluorouracil. It stops cells making and repairing DNA. Cancer cells need to make and repair DNA so they can grow and multiply. Cancer Research UK

Weekend

Well, the weekend was lovely, having seen in New Year’s Eve at 9pm on 31st, then got absorbed in Bridgerton on Friday, and the weekend with walks, meals, online chats, reading, and me making my photo book!

 

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A reminder that dealing with cancer is not about surviving because of courage and positivity:

 

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Monday

Monday morning I made an effort to arrive early so could have my bloods, then go to appointment with oncology registrar – but got sent straight to waiting room for registrar (where I waited half-hour plus – pretty normal), then got sent to wait in a treatment room ready to talk…  then it was time to sign that I’d read the leaflets about the new drug (capecitabine), including that I know that death is a possible side effect, before heading back to the chemotherapy ward to have my bloods done:

 

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Bloods typically take an hour or so to come back, so thankfully, there was some spare lunch on offer, and I settled in with my phone. I won’t always have to wait for my bloods to return, but this week I’m having my denosumab, which takes calcium from my blood and puts it into my bones, so we need to know how my blood/calcium are doing!

Whilst we were waiting for that, then it was time for a chat with the pharmacist, who gave me 14 days worth of tablets. The plan is that I will take 4 tablets in the morning (around 9.30am), and 4 in the evening (around 7.30pm) – minimum 10 hour gap between tablets, maximum 12, and always no longer than half an hour after food. I take the tablets for 2 weeks, then get a week without them, before returning to the oncology ward for more bloods, discussions, and to collect the next 3 weeks of tablets/side-effect drugs. I’ve had the DYPD test, so the expectation is that I shouldn’t get the worst of these side effects, but there’s a nice visual of what to look out for, and at what point to ring the ward or 24/7 ‘chemo line’ at the Christie – although the final one on the list is a 999 job!!

Tik-Tok

I summarised the expected side-effects in this Tik-Tok (although the hand-foot syndrome is the most expected, so I have some gel socks, lots of hand gel, and we’ll see what else is required). Pharmacist also gave loperamide and specialist cream for hands/feet – and we wait and see.

@drbexlLess of an ##OpinionMinute and more of a ##cancer update! ##BusyLivingWithMets and about to start capecitabine.? original sound – Bex Lewis

Tuesday

Last night I also added another codeine-patch, as registrar thinks it was co-incidence that I was sick after putting the second one on before. I have a 5mg BuTrans patch, now have 10mg with 2 patches on – experimenting before asking for 10mg patches. There’s a lot of pain still in my right shoulder/armpit, and all the extra fluid in my arm is deeply uncomfortable – I’ve been referred to the lymphedema unit, and have an electric heat pad (which helps whilst it’s on!), doing my physio, and trying to massage the fluid around, as well as wearing my sleeve/gloves which were designed for my other arm…!

This morning I got up in time to take the first set of tablets – with some chocolate cookies as my food (plan to make some muffins, etc), and so far (aside from irritation at the GP message system) I just feel somewhat drowsy so far … let’s hope that becomes it…

 

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Categories
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
Cancer

[CANCER] A rather exhausted update

It was only a couple of weeks ago that I updated everyone as to where we were at on treatment, that I’d had a pleural effusion (fluid on the lungs) identified, though oncologist thinks that it’s the toxicity of the treatment causing breathing issues, rather than the effusion itself .. Still very tired, planned to write this yesterday, but nope … but after watching a Zoom nativity this morning, and a catch up session with the Beyond Choc team (A Truly Nourished Christmas, anyone? : a reminder that we asked ourselves ‘I appreciate myself for…’ ‘… getting out of bed every day despite the brown and smelly nature of much of my life right now’…) … wanted to get the basics out of my head…

Treatment?

I have therefore had a couple more treatments of paclitaxel, although the dose has been reduced by 20% overall each time (and no, that doesn’t mean 20 minutes less in the treatment chair). I will have another treatment tomorrow, a break for Christmas week, and then the 18th planned treatment on 29th December. My skin rash has cleared up on my arms, face still breaking out somewhat (but this face mask helps, along with some prescribed lotion), and breathing has improved. I’ve also had a telephone consult with ENT, who have given me Sterimar to take for a month, alongside the Nasceptin that I already had from chemo 3 years ago! Nose still pretty drippy/bloody, but my voice has stopped sounding ‘stretched’. Peripheral neuropathy is still a problem, but we think not getting worse on this reduced dose – important to try and keep on top of – as impacts on ability to be independent. Pain killers and stomach medications also abound everywhere. So, when the oncologist said that we’d keep going with paclitaxel ’til the toxicity got too much’, that appears to be now (I thought I’d be on it for a year or two, maybe, but apparently it’s unusual to get people who manage more than 24 treatments). As we’re coming off it for the purposes of toxicity, rather than for tumour progression, we can apparently return to it further down the line, when required (erm, joy). We’ll see what/if paclitaxel has done, with my next scan on 9th January.

So on 4th January, I will be starting on capecitabine, a tablet (rather than IV) based chemotherapy (commonly known as ‘cape’). A couple of weeks ago a blood test for DPD was sent off, and apparently came back fine, but we want to try and finish the course of paclitaxel first. I don’t know how I’ll respond to it – both in terms of whether it’s effective in reducing, or at least maintaining, my tumour size, and also what side-effects will decide to make themselves known – sounds like fatigue, stomach issues, mouth ulcers, and sore hands/feet are quite common – but my hair may come back… though I may lose my fingerprints! I’ll go into the oncology ward every 3 weeks for a blood test, and to pick up new tablets. Friends who are/have been on it, say that it’s much more ‘manageable’, but again, how long will it work for even if so … some people say ‘oh, I got 6 months on that’, others, like with the H&P I was on, are 5 years down the line with it.. no one can tell – either before you go on it, or once you’re on it – one scan be amazing (like mine was last November, with NEAD), and the next can be a large tumour (like mine this June/July) … cancer is entirely unpredictable….

Work?

And this brings me to something that I’ve been wrestling with over the past few weeks… whether I am fit to return to work, currently obviously my specific job, and in general, any job at all. Obviously, I’ve worked incredibly hard to get where I am, and kept saying ‘can’t die until I’m a professor’ (which is 2 promotions away), but after nearly 6 months off sick, rather than getting better, I’m still struggling to get out of bed, to concentrate, though I’m doing a few bits and pieces that I enjoy. I have half sick pay that runs from mid-January til mid-July, although there’s a possible voluntary severance scheme to consider – which is largely separate from the question of taking ill-health retirement. So, lots of conversations with others who have been through the same turmoil (some managed to return, some left), with some friends and family (off social media), and, obviously, work. If I stayed on the paclitaxel, I think it would be pretty cut and dried that I’m not fit, but it would be good to see how the new drug impacts upon my life/concentration, etc. Obviously, I still feel there are things that I want to stay/contribute to life, but can I do them in my current job (with reasonable adjustments), or will I have to find other ways to still find life’s meaning… If I could sell tears, I’d be very rich…

Alongside all these questions, although everyone of course hopes that I may be an ‘outlier’, and live for 10, 15, 21+ years, the stats are not amazing for metastatic cancer at all (over 10,000 people have died from metastatic cancer this year), with 2-3 years a more typical ‘average’, and possibly not even that good for triple negative cancer. Obviously these are not pleasant thoughts to have to engage with at the age of 45, and talking to the pensions people – sounds like I’d have a great pension if I retired at 67, but if I have to take it now, it’s either a very low amount of money (but allowed to/would need to work), a small but more manageable amount of money (but ‘incapacitated’, not a speck of work allowed), or, if the oncologist reckons that under 12 months is a feasible likelihood, then 5 x the manageable amount + a small lump sum as a tax free lump sum (not enough to quite pay off the mortgage, which even if I did would leave me with nothing to live on, and why would I want to!). This is where thinking about friends – those who went from healthy to dead in a very short space of time AND those who were predicted 6 months and still here 7+ years later … leaves questions about needing to still prepare financially in case one of the ‘lucky ones’ – so many unknowns! How many times have I wished that I had ill-health insurance on my mortgage… though friends/family keep telling me I am not alone in all this!! I keep telling myself I’m thankful that doing up the house is at least done, so hopefully can stay and enjoy being here … mixed with ‘come on the COVID vaccine’ so I can go and see people again!!

Anyway, it’s been nice to be able to get a few (socially distanced) walks in with responsible friends and my bubble family, and do a little bit of video recording – even got round to putting my Christmas tree up! Also, am still keeping the postman busy – not only with my medications, but also some lovely gifts – especially from Beyond Chocolate friends over the past few weeks… lovely firepit to try out, some nibbles, some netflix, and some Tropic goodies!

Opinion Minute

I’ve still carried on my experimentation most evenings with giving (video) expression to my thoughts for a maximum of 60 seconds (via Tik-Tok) – and the one last night was about misuse of disabled parking spaces:

@drbexlToday’s ##OpinIonMinute (having just watched ##Strictly), about the use of ##Disabled parking spaces. ##BusyLivingWithMets? original sound – Bex Lewis

See all Tik-Toks

Christmas?

Well, no one can say that it’s not an unusual Christmas this year .. COVID has thrown many people’s plans in the air (well, responsible people anyway). I’m not sure I’m fit enough to drive 6+ hours to my parents, and I don’t want to get the train into London/tube/train; I don’t want my parents driving on some of the busiest days of the year either, so hopefully we’ll do Christmas in January again (as we did last year, after I had my oophorectomy). I posted all the Christmas presents I was organised enough to do last month, and I typically do an e-Christmas card on here + a few cards for the neighbours! Been enjoying some simple Advent prompts too..

Thankful to have my bubble family to spend Christmas with – I’m taking a Sicilian chocolate panettone (from A Tavola), some pigs in blankets and a bottle of port … and anything else that may already be in my cupboards, because don’t have another Christmas shopping food slot! My cousin is coming from London, so has already been isolating, will buy a test, and find an empty train carriage to come up here … I’m really looking forward to having some company – and someone who doesn’t mind that I’m not awake for huge chunks of the day!