Tag: Capecitabine

Categories
Cancer

[CANCER] Kale Poems = Laughter midst the pain

It’s only 8 days since I last updated the blog, but – wow – does it feel much longer – just so much ( rubbish) going on – so Rox wrote me:

Kale scale of bad news

Kind of what I was expecting
A bit worse than what we wanted
Let me think about that
Emergency exit?

The Past Week

Friday, I managed a short socially-distanced walk with Suzanne – this is where we truly faced the breathing problems I have – so we stopped for a bacon barm – leaning on a couple of lampposts:

https://www.instagram.com/p/CKWY3GOhXuT/

Enjoyed having some company from my bubble, and continuing my #OpinionMinutes, and Sunday enjoyed watching Andrew watch himself on Songs of Praise:

https://www.instagram.com/p/CKbgLdQh99O/
See the episode

So it’s nice to have a bit of good news. and Monday I was featured on Ticking Off Breast Cancer about surgery, and – even better – the bed company engineer visited and agreed that the bed was faulty (as Andrew had guessed, a bolt had fallen out, and then the ‘arm’ had twisted out of shape) – and it was fixed that day! So, this fits with another of Rox’s poems:

Kale scale of good news

Kind of what I was expecting
A new hashtag is born
Let’s accept this good thing
Everybody! Something good happened.

Also good news was seeing my podcast with Will Taylor come out, and participating on a panel with the Stronger Conference.

And I guess other good news, though it comes with all kinds of mental upset – is that it has been agreed that I will have a carer come for half-hour every morning to help me put my sleeve on

Oncologist Appointment

Wednesday it was time to head back to The Christie for multiple appointments

  • First, a catch-up in the lymphedema clinic, where I was complimented on how far up my arm I had managed to put my sleeve, and a sense that there is already some sign of shrinkage. We also cut a bit off the fingertips, so I have a chance of touch-typing, using my phone!
  • Second, a taking of bloods, in which we tried to find out where/how to get another yellow sharps box – finally agreed that District Nurse will bring on next visit.
  • Third, a conversation with one of my SBCN (Secondary Breast Cancer Nurse), going through my ‘patient history’ document, and seeing which questions she could answer. She then went for a conversation with my oncologist…
  • Fourth, a consultation with my oncologist
    • We looked at the rash on my chest/nodules on my right shoulder, and agreed that they look ‘suspicious’, so I will be sent for a consultation/biopsy back with my original surgeon.
    • Being between 2 hospitals there’s been trouble accessing my scan images, so I will be sent for another CT scan, also to particularly check out these new areas of concern, and (I guess), my lungs – what is causing the breathlessness (thought to be paclitaxel)
    • If I stay on the capecitabine, then I will continue with everything at The Christie, if I have to swap to another IV chemo (depends on biopsy/scan results)* then I’ll go back to Stepping Hill. The scans hopefully will also give insights into breathlessness and pain.
    • I will have denosumab at the next treatment, I’m allowed to have the COVID vaccine (next Tuesday),** we keep going with the Clexane (blood thinners) until at least next appointment.

* Can’t believe after only 2 cycles of capecitabine this is a possibility…

**As neither of my arms can be used, apparently will be in my butt – lovely.

Capecitabine

So the capecitabine (cape) – the only obvious side effects (aside from fatigue/sleepiness), is nausea – and we’re hoping to manage this better this time – with preventative lansoprazole in the morning, cyclizine 3 x day – and bedding the medication down with carbs (bagel, etc.) – so another poem from Rox:

Capecitabine with Kale (and Carbs)

Keep the carbs by my bed
And the love in my heart
Let the emotions wash over me
Exhausted, I persist.

The rest of this week, outside of conversations with palliative (we are now swapping from BuTrans to Fentanyl patches) and district nurses, has included long overdue chats with Leanne and Tansy, and Jane and I just enjoying a chilled afternoon whilst I try and take my mind off the constant shoulder pain – we did a very tiny walk!:

https://www.instagram.com/p/CKrJ1z_BFXm/
Categories
Cancer

[CANCER] What’s going on – it’s all going on!

When I first started this ‘cancer journey’ (what a horrible term), Andrew Graystone said to me, you describe yourself as a life explorer, just here there’s another aspect of life (albeit unwanted)… and that’s how I’ve tried to live with this cancer … but sometimes it’s flipping hard work. Super thankful that Andrew and Jane – and many others – remain alongside me, especially as we struggle with the extra layer of COVID.

When I received my primary cancer diagnosis, it was terrifying, but it seemed possible to deal with the treatment, and then seek to move on forward. When I got the first secondaries diagnosis, that was more scary but with NEAD after treatment, I was feeling pretty hopeful for a normal length life. This last 6 months, since the new tumour in the sternum hospitalised me, it feels like a relentless struggle, and especially since November, a bit of a downward slide, which leads to questions – am I going to get better, or is this the start of a managed decline? Am I like that person – I remember Chris Evans joking about this years ago – trying to get the last few drops of fuel out of the rental car before having to return it with an empty tank!

This doesn’t mean that I’ve given up hope (just need some space to speak out the fears (not necessarily on social media):see link to ‘toxic positivity‘) … really I hope that we’ll be able to get on top of the multiple pains in my right shoulder, the nausea that accompanies the capecitabine, the breathlessness that started in November and is getting worse, and the lymphedema – where I’m carrying maybe 5kg of fluid in my arm (and nope, we can’t just put a pin in it and drain it out!

Talking Strategy for METUP UK

Monday morning, I joined an (early!) Zoom call with Oxygen Strategy, where METUP UK were given insights into how UK government policies are formulated, and how to we could more effectively put forward our arguments for better policies to make a difference to the 31 women who die every day in the UK… and for which there feels as if there is no sense of urgency anywhere!

Secondary Breast Cancer Nurse (SBCN)

Appointments with oncologists and other consultants are understandably swift … so, since July, I have had an SBCN (ideally every secondary patient should have one from diagnosis, but this is still not happening). I had an hour+ conversation with my nurse, talking through where my understanding is at, and queries and worries that I may have. One of the joys of ‘digital’ is that I’m able to email queries – including a photograph of a rash on my chest (which, along with some nodules near my neck, and the lymphedema – feel like signs of skin mets)… As I have been bounced around so many different medics, there’s a decision to centralise as much as possible at the Christie – so next Wednesday, when I pick up my next prescription of capecitabine (I’m on my ‘week off’ after 2 weeks of tablets), I will do so at the Christie. At the same time, will get a physical examination, and some medical photography and then we’ll find out what is going on.

We talked about the breathlessness – maybe my body has felt under some kind of attack and is now ‘guarding’ so not allowing space to expand. So, I need to find some breathing exercises – and make sure that I’m not breathing from my shoulders! Also a reminder to take oramorph around 15 mins before I go out for my (shorter and shorter :-() walks – in large amounts = not good, in small amounts, can relax the lungs. The nausea is probably not helped by the fact that not eating enough (carbs)/not lining the stomach enough before taking the tablets – so working out food I can keep in bedroom to eat in the morning with tablets (and just ordered an extra toaster so can have some crumpets…) – along with some fun lansoprazole. Like many medics, are encouraging me to ask for more help (whether professional or friends), including e.g. batch cooking (though right now am trying to eat down my lovely Cook meals so I can defrost my freezer!)… and yes, if you ask if you can help, I try and collate ideas into a Wishlist! Lots to keep thinking about and asking questions about, as, as she said ‘your cancer keeps surprising us’ … yes – it keeps throwing scary curveballs at me.. and have to keep getting up and finding a new way to plod on day by day…

 Occupational Therapy (OT)

Not to be confused with ‘Occupational Health’, OT is described on RCOT site as:

An occupational therapists job role is to help people of all ages overcome the effects of disability caused by illness, ageing or accident so that they can carry out everyday tasks or occupations.

An occupational therapist will consider all of the patient’s needs – physical, psychological, social and environmental. This support can make a real difference giving people a renewed sense of purpose, opening up new horizons, and changing the way they feel about the future.

I’ll talk about the lymphedema in my next point, but it is causing me a lot of problems – it’s now in the my right arm – which is my dominant arm! There’s a lot of things I can’t reach, and I can’t grip properly, plus the questions of what may be causing me pain and breathlessness. I struggled with this visit, as I don’t want my house to look like a hospice (and as she kept saying ‘your house is very stylish, but not particularly standard’ in terms of using accessibility aids), and we talked a lot (she was very supportive) about how their job is to try and help me keep dignity and independence, rather than the opposite. But the OT has made a list of things that she can provide ‘on prescription’, a list of links of things to get for myself (e.g. small bits and pieces for the kitchen), and asked me to consider a Stannah Stairlift – in the sense of getting it before it’s useful… but obviously I am hoping that we will manage to improve my breathing, and I won’t need it (also £150 for first 3 months + £50 per month after that… but as I said, it’s not like a Netflix subscription which can drop in/out of each month – and it symbolises so many things for me. If becomes necessary, then they should be able to get it in in a week (though we have one step at the top to decide whether to navigate or get a platform built)!

Today, the first piece of ‘prescription’ equipment turned up, but look at the difference between what I imagined was coming when I heard ‘perch stool’ (so I can manage longer in the kitchen), and what arrived (wondering if can joosh it up with some red furniture covering – and make it look a ‘bit less institutional’.

 

So, I’m now learning about all kinds of things – my sofa is apparently too low (so sitting badly), so need to find out what my sofa legs are, and then ReMap can make some leg extenders (better than putting a cushion under the other cushion, as then the arm rests are at the wrong height! I need to look at a cantilever table so I can use my laptop (tempted by light oak version of this), though the perch stool (adjustable height) actually doing quite a good job right now! I’ve been learning all about Dycem, and can look on Living Made Easy for lists of suggested useful equipment. In the bathroom, looking at some kind of swing in/out bath panel so easier to get in/out (though am OK with this – OK, well I’m breathless once I get out), and hoping to move beyond the need for a ‘poo stick’ with a bidet seat (all something I would never have thought about and was wary about blogging about, but conversations – trying to share a sense of the reality). Gradually collecting names of shops where can buy things other than Amazon where possible, including Complete Care Shop… ooo and MotionSpot for more stylish stuff…

And for those of you asking about the broken adjustable bed, which broke 5 months after I received it from the Recliner Factory, the engineer is coming on Monday to fit a new arm. I’m still not clear if they have accepted that all I have done is sleep in/sit on this bed, as there have been strong indications that they think I’ve broken it, and want to charge nearly £600 for the repair! Thankfully, Andrew is helping me with all this, communicating with the store and will be here Monday to talk to the engineer. Look at me accepting help..

Those 3 meetings were all Monday, so I woke Tuesday morning feeling like someone had put a tap in my big toe and drained all the energy out of them.

Lymphedema

I wrote about what lymphedema was when I developed it in my post-surgery arm. I was talking to a friend who said ‘well, your arm can fluctuate in temperatures’, well, yes, but this is now my non-surgery/right arm – so there’s no obvious reason why it should have swollen. This is where I said my weight went up by around 5kg over Christmas (and it wasn’t food) – so I am probably carrying that around in my arm (and a similar amount on my chest/right breast)…

I got a nice swift referral to the rehab team at The Christie, and a 10am appointment (when you don’t typically wake til 9.30am it’s early!) – there’s a limit to what they can do (e.g. could have MLD in normal times), but emergency care allows for appointments for assessment. I was measured for custom fitted compression sleeves (the aim of which is to push the fluid back up towards the shoulder… and then preferably down my back, as don’t want any more fluid collected in my front)… in a choice of black or beige (black shows less marks, right.. and might as well ‘go big or go home’). The sleeve I had been wearing from my left arm had apparently possibly made things worse, but anyway… She also really wants me to have a supportive bra, but I can’t reach round the back, and there’s a limit to finding something wearable and supportive – but I’ve got a couple from Amoena to try out (when I’ve got the energy and breath to take on/off) – meantime post-surgery bra and knitted knocker (rather than prosthesis) – not THE most supportive, but better than nothing right now! Encouraged to practice deep breathing, and told OK to use wheatbags for shoulder pain, although lymphedema doesn’t like heat, so ensure get some heat-free time.

That was Wednesday, and I got a call on Monday to say that my sleeves/gloves have arrived (get 2 – one to wash, one to wear), and the only appointment we could find was 9am Wednesday – so back in there super early (remembered to park a bit closer). She ensured that I was fitted properly with everything, and sent away with instructions to try and wear it every day, to wash the glove/sleeves daily, and a sling for when the arm gets super heavy – but to use this sparingly – need to do flexing exercises on the arm… The roll-on you can see in the middle of the pic is adhesive (as the silicone didn’t work well at holding my sleeve up before – ended up with damaged skin), and the green thing you can see … well..

The lymphedema specialist said she’d never been told this before, but I said it reminded me of what my Dad use(s) to stick his hand up a cow’s bum.

It’s actual job is to help me get the sleeve onto my arm (because I am trying to do it one-armed, although the District Nurse is talking about being able to access someone who comes around for half-hour and helps me get a sleeve on/maybe prepare a quick meal), and then the orange loop can be hooked around foot or door or something, to ease it off (making sure it doesn’t take the rest of the sleeve with you). There’s also a darts and seams to line up, and a big ‘hoik’ to try and get it up the arm!

Definitely seeing it as a learning process – day 1 I put the glue in the wrong place, and spent most of the day pushing the top half back up – producing a bit of a tourniquet effect on the elbow/wrist (although the gloves are custom designed as to where overlaps are expected, so don’t get a double-compression effect. Today, I got the glue in the right place and it stayed up for a couple of hours, then in the afternoon the District Nurse helped me reapply and we got it back up for a couple more hours. I’ll check back in next Weds before my oncologist appt and see how I’m getting on…. Fingers feel a little long on the gloves (for someone who wants to type and use a touch-phone, so excuse my random spellings and typos these days!).

Palliative Consult

My Macmillan Nurse has been keeping a close eye on me, and because having so many problems – referred me for a palliative consultation (a reminder that palliative is about quality of life, not necessarily end of life, although that is part of their remit). A really helpful, thorough and supportive session where we talked through what I understood about what was going on, trying to describe my pain (twangy, kneading, bruised, pin-like, etc. – I have mutli-types of pain) – and what seemed to be working/not working with the meds I have (my document I made the other week seems to be well received by all my new medical team – means I don’t have to remember all my meds, and gives a sense of the overview of the last 3.5 years of what has/not worked). We talked about my recent scans and worries about skin mets – because the CT scan had come back ‘stable’ – the lymphedema is clearly caused by tumour in armpit (so has it grown?), some nodules under the skin on my right shoulder (feel a bit like tree buds) likely all putting pressure on my lymph system. The skin on the front – scans demonstrate that there is skin thickening in response to the radiotherapy … so is the rash also radiotherapy related or is it skin mets … we need to investigate – but if it is skin mets, at least I’ve already started a new hopeful chemotherapy.

We focused on pain, breathlessness, nausea and lymphedema – and talked about options for how we might manage some of these – as they are impairing function! So, we’re upping my BuTrans patch to 20mg, keep going with the oramorph for top-ups, both of which should help with pain/breathing (spoke to Mac nurse this morning saying pain actually worse last couple of days, and she said still needs time for things to work, and that, though it may feel like it, am still on low doses, so there’s places to go). Took on board my desire to be compos mentis, and to be able to concentrate/write – so don’t want to be so drugged up that not really with it.

Over the last few weeks we’ve tried Cyclizine (did improve things but not remove nausea), Haloperidol (no difference), ondansetron (similar to cyclizine, but also ‘blocks the system’ so not so much fun), and most recently, levomepromazine – which is dispensed in quarter tablets – makes you very drowsy + wake up in the morning with a mouth as dry as the sahara. Aside from today (which was probably the port I drank last night), not felt nauseous now on my week’s break from the capecitabine… so not taking any of those this week – and we readdress ready for when I pick up the next prescription next Weds!

We also talked about options for support and care that are available, even if I don’t feel ready for/feel the need for them yet.

Liberate

I’ve been involved in a trial looking at symptom monitoring and information sharing for secondary patients and their friends/family – so had an hour long session on Tuesday feeding back ideas – so that’s another trial ticked off – although I’m looking forward to reading the report!

#BexParty

I enjoy holding online Zoom parties, which bring together people from disparate parts of my life – trying to have every 3-4 weeks, and try and keep the organisation light! Set up a Facebook event, send people the Zoom link (thanks to a friend who gives me pro access to Zoom), then let it go (usually like a drop-in-out houseparty from around 7-9pm) – the topic takes complete random directions, some people happily sit and watch others chatting, some speak up a lot. I find these physically tiring, but it’s the closest to feeling like I’ve got out and about – so really valuable!

Meantime, I’m largely continuing with my TikTok #OpinionMinute, my (very short) daily walks – and most of my day is taken up with managing small daily tasks (and lots of daytime TV!)…  whilst also seeking to do little bits and bobs of things that get things out of my head, and seeking to prioritise convos with friends!

To you all, as ever:

Photo by Wilhelm Gunkel on Unsplash

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…

 

View this post on Instagram

 

A post shared by Bex Lewis (@drbexl)

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] 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!

 

View this post on Instagram

 

A post shared by Bex Lewis (@drbexl)

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

 

View this post on Instagram

 

A post shared by Bex Lewis (@drbexl)

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:

 

View this post on Instagram

 

A post shared by Bex Lewis (@drbexl)

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…

 

View this post on Instagram

 

A post shared by Bex Lewis (@drbexl)

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!