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.
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!).
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.
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!
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: