Side Effects – Dr Bexl Revamp

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

So, 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!