[CANCER] Where has the last week+ gone?

So, I last blogged 30th Jan, saying that breathlessness was becoming a big problem, but I was waiting for CT scan at the Christie (where they can use my portacath), and a biopsy for chest rash with surgeon at Wythenshawe.

Trying to Digest Dr Info


My head is spinning somewhat – but I find blogging about stuff a helpful way to process the information – and even more useful to direct people to … I don’t respond to ‘how are you today’ DMs as I tend to work on those on a group basis, and more direct qus as can manage the sense of information overwhelm/repetition more easily. I liked this article about The Bald Ballerina recently (and I’m still seeking info re social media and cancer):

When she was first diagnosed with cancer, Kudirka was encouraged by a former professor to keep a blog, either just for herself or to share with friends and family, to record all of the milestones on her new journey….

Initially, Kudirka limited her online audience to friends and family—it was just a way to keep them informed of how she was doing without individually contacting each person. Eventually, she made her site public and transformed it into an education and advocacy page.

NBC News



The CT scan got pulled forward to Wednesday 3rd, directly before the appointment in Wythenshawe (and the day after my first dose of COVID19 (AZ) vaccine: thankfully just ‘more fatigue’ and no other side effects).

The CT scan was hard work, trying to lie down flat – where seem to lose all access to air (any bending, any exertion, fine when sat with computer – but you know me and my walks/swimming that already missing). Andrew gave me a lift in, and I asked for wheelchair to radiography and back (missed Percy Pigs opportunity on way back as whizzed past M&S in my wheelchair).

Andrew then drove me onto Wythenshawe, where I got to see my original surgeon/breast nurses – he immediately said to have little expectation of ‘getting home tonight’ because breathing so bad – and started the process for admissions to acute ward – whilst continuing with the biopsy on the rash on my chest. Even amongst more tears there was laughter … the breast team like to ensure you have a ‘modesty gown’ on – so my surgeon made one from the blue paper roll.. nurses said no need for a fashion career. Lovely to be remembered fondly by the team – crap reason to have to be there (I was told to make sure I got to see Katy as well as Nicky before I left). 

Tiny biopsy from right breast where there was a rash that had been growing since November (also when fluid started collecting, and had first CT for breathlessness (which demonstrated small pleural effusion) – pretty painless, though required a couple of stitches because of the blood thinners I’ve been on since July. Initial thought was yes, this could be malignant, but also could be the oedema fluid collecting and pressurising (I am probably carrying maybe 10kg of extra fluid under the skin – pressing in all kinds of directions – unfortunately can’t just stick a pin in to drain it – complex lymphedema sleeves and compression massage, etc. (professional ones not currently possible in COVID times)). 

Been undecided about whether to post or not – but others with fears asking what look like (there are other nodules under the skin which I can feel, but can’t be seen:): 


Hospital Admission

So, last Wednesday evening, I got admitted to Wythenshawe acute ward … and Thursday the week after I’m still here, although we are in the process of talking about what we need for discharge to home. Friendly staff, my own side room/en suite, anti-pressure mattress not solid sponge, wi-fi that kind of works (phone signal that definitely does). 

In hospital we’ve been trying to deal mainly with chronic pain in the right upper body (probably caused by lymph nodes being blocked, cancer growing, and everything fighting for space and putting pressure on underlying muscle/bone structures (because a CT scan of the neck doesn’t show any cancer in the painful neck); and also with breathlessness – which doesn’t necessarily tie to low oxygen sats – and I’ve spent most of my week with one kind of oxygen mask or other on. Any kind of exertion has continued to cause problems. So what can I remember from this week (don’t be surprised if I remember something else and re-add): 

  • The first evening was spent in A&E/ED (whatever it’s called these days), being monitored, and trying to find someone to insert a portacath needle so that bloods could be taken (bearing in mind I now have lymphedema in both arms, very actively in the right side: we try and keep that skin unbroken otherwise = infections = cellulitis, etc.). The needle had changed, so just after we’d got bloods, it came out – so then had to decide whether one needed to stay in – for overnight went for ‘no’. so a needle free night After a speedy journey down some corridors, found myself in Bed 50, Ward A10 
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  • The next day (Thursday) was World Cancer Day (oh, let us raise some more awareness of the forgotten C please – though am also aware that there are many even more forgotten diseases), and I had to have a doppler inspection of my arm to ensure no clots down there (before allowed to put lymphedema sleeves on). Felt like a long day – and there was the joy of hospital food.
  • I think Friday comprised of talking about a lot of scans, but not managing to do quite as many – I had a nose/throat inspection (that was fun – COVID test magnified (and oh yeah, get one of those every 3 days too)). At this stage we wanted a CT of neck (and port needle back in), a fine needle aspiration of thyroid as apparently have a ‘goitre‘ – possibly pushing windpipe out of alignment (but again, probs not enough to be causing the problem, but I can definitely hear that squeak in my breathing), plus an echo of the heart (is there fluid around it?). Think this was also the evening that Helen was able to safely visit, bringing some cherries/raspberries (fave fruits), and seeing if there were suggestions to make me more comfortable! That means had visits from the acute oncology team, the palliative care team (remember, it’s not all about ‘end of life’, it’s about giving better quality of life/symptom management – possibly for many years), ward doctors, various nurses and specialists – so a friendly face at the end of all that was much appreciated (yes, I love digital, but I also love f2f meetups too – it’s not an either/or for me!). 
  • Trying to work out what happened over the weekend – even on Instagram the days are blurring… but I finally got my CT scan (and ironically had to be cannulated, but we used the left-not-so-distended-arm – where I do have ONE good vein in my elbow! That needle finally came out today; port needle still in).  Ended up with 15l of oxygen being pumped through and head lifted on a pillow -but very calm team – got it done. Did have a laugh with the porters who tried to take me back to the ward before I’d had my scan – ‘hey, I’ve been waiting 3 days for this scan’… one of my continued #OpinionMinutes that evening (along with hospital decor, access to own medsthe learning experience, etc)… and I think I managed to get pizza delivered to the hospital (courtesy of Helene).
  • The pain really ramped up over the weekend into Monday – largely down right hand side of neck (across to shoulder and partway down back). So fentanyl patch was upped from 12mg to 25mg, pregabalin upped from 50mg to another 75mg twice day, more oxygen, more pillows (using lots of audio books as can’t sit in a position to read well), continued baseline of paracetamol 4 x day, and by this point having quite a lot of morphine every couple of. hours – was a bit like someone trying to ram a steel rod through at some points. Was also recommended to try a TENS machine – so we borrowed a pregnancy one (half strength of pain ones) – got it going full strength and it’s doing something… now awaiting the new stronger one which YODEL took away again today – hopefully they’ll try the neighbors tomorrow…
  • Andrew and Jane had continued to be couriering stuff in & out, tests determine that I have areas of pleural effusion both bottom left lung and top right lung – but these are only a couple of cm each and not drainable; the pressure on my thyroid is deemed not to be big enough – so the aspiration biopsy has gone off the list at the moment… 

New Tumour(s)

  • Tuesday brought, amongst other things, 1kg of dried mango in the post (severe shortage of vitamins etc in my food), the TENS machine, a conversation with the surgeon in which he said “I’m sorry, but the skin rash is malignant, we don’t know what receptors yet, and we can’t do surgery on that/the armpit right now’ (and I knew I had a conversation with the oncologist to come Weds).Also the day to start on dexamethasone (THAT steroid that Trump sent even more insane tweets on).. it’s the one responsible for the term ‘roid rage.. also known as ‘Dexy’s Midnight Runners’ for the insomnia it causes.Think also had the echo this afternoon – and that was not a good experience (or was that Weds – who knows)  Andrew was able to pop in briefly, as was Lee (friend and minister from my URC church), in amongst conversations with specialists and all sorts.. 
  • Wednesday morning was spent getting clear on what wanted to talk to oncologist about in the afternoon (usually do the day before and email in, but anyway) … a chat with the palliative team (working on symptom management for pain/breathlessness) – pain thankfully reducing – spacing morphine out 4-hourly by choice as TENS and heat jacket both work away… Lovely little video sent from Karen on French beach, and then lovely old memory pic (I’m up for more living memory pics – got them all over the house).
  • Wednesday afternoon, palliative nurse came to join conversation with oncologist (originally planned f2f, but breathing so bad, we reverted to telephone). I was feeling that convo was challenging as deal with new tumour and what option(s) that brings, and was doing OK til he asked ‘I need to check that you want to continue with treatment’ (I think this is now a pretty routine question, but felt loaded/unexpected to me), and the nurse watched my face crumple. But essentially, capecitabine is clearly not working (already – annoying as side effects were minimal/well-managed), so we’re now waiting on a d-dish test – is there herceptin in my new tumours (this is not a routine test, so having to wait a bit longer based on an indeterminate previous test). If there is, then I will start on Kadcyla as next chemotherapy, if not, then I’m still triple negative and onto Eribulin. We’re hoping the test will be back for Monday afternoon MDT and then a phone call – so hopefully can go into Christies on Weds and talk next chemo. 
  • Thankfully knowing this call was coming, then had long chat with palliative nurse about how do we start to move me out of hospital, what now, etc. and Lee also returned with communion (one very large hot cross bun as bread) and calming conversation, and thanks to the Giles for providing Chinese (took the nurse’s recommendation)) – way too much food and can’t reheat anything on ward, so sent main meal back with Andrew and Jane today after it spent night in a fridge – hope it’s a tasty as it looked! Given extra oxygen for the evening, but asked to change as couldn’t work out how to sleep in it.,..

Where Now?

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  • So, we come to today … dealing with conversations over last 24 hours about Stannah Stairlifts, a week in a hospice, need for carers, including this morning help with shower (which I never wanted – but as Andrew said – you never wanted any of this, did you – good point!). All conversations I’ve associated with ‘end of life’ care – which as I’ve always said – can come to any of us with mets quickly – and things do feel like they are growing rather rampantly … but doesn’t necessarily mean this – so I need more conversations with oncologist – a simple question about prognosis last summer feels like it’s taken on connotations – and I either need to get my head around bad news and find a way to make the most of time, or I need to stop assuming the worst… a complete head messer. And this all on top of 1 hour of sleep in bed, 1 hour nodded off in chair (despite top dose of zopiclone AND oramorph)!
  • Andrew was allowed in for a short visit again, bringing a few things from others (and my laptop, hence managing to blog) – and yeah, I’ve killed all the data on my phone as 4G is better than Wifi – usually have 12GB pm allocated, but now paid another £20 and buys me unlimited for next 19 days – so netflix post-blog I reckon – or maybe I will actually fall asleep (which I didn’t really last night). 
  • Hospital doctor says there’s a couple more things they want to try, then can look at how to get home – maybe over the weekend. Tonight I’ll be wearing an oximeter attached to a fitbit type thing – sending them data all night. 6am they’ll come and take it away, and take a blood reading from my earlobe (done twice already this week) – then come back and talk about what my oxygen needs might be at home (if any) – will take oxygen off for evening, unless drops below 88 (usually 94 is drop-off point, I think, and most people will have sats of 98-100/100). We’re also trying am mild diuretic as didn’t get great ECHO images – so seeing if there is any impact on fluid around the heart. Dexamethasone was all given this morning in hope might get some sleep, and tomorrow will be halved – doesn’t seem to be helping breathing, although maybe is helping pain? Indicates that probably not an infection either, pretty confident with level of blood thinners I’m on/scans I’ve had that don’t have blood clots… so that’s really where the hospital experience can start to work towards discharge… 
  • One of the things I’ve been resisting is a Stannah stairlift – which I can rent from Stockport Council (£150 for 3 months, then rolling £50pm after that if still needed), but expecting to give the go-ahead for this. This will probably take a week to put in, so seeing if we can get a room at St Ann’s Hospice for a week – get some specialist input on breathing/pain, some caring, better bed/food, then hopefully get home (being well looked after by Andrew and Jane, and my neighbours), and put into place a care package of support. Hopefully if/as the new chemo works, things can improve and can start to shed some of these services, or continue them as needs be … trying not to over-think/plan (very hard). All these are aspects of life I thought I might have to worry about in a couple of years – so it does bring big questions about what life is going to look like now (and yes, has been serious conversations with work, where I’m now on half-pay)…. Having got my head into accepting all that stuff – then of course let’s hope there’s a Stannah installation slot and a bed free at the hospice (other option is can come home, live upstairs short-term, with food being bought up to me by carers/friends). 
  • All a bit ‘big pants, yes pants with a big gusset’ (as my friend Justin used to say) – lots of uncertainty – lots of overwhelm… may have forgotten some things, but this is already a long blog post, and I think it’s time to wind down… (had ward doctor, palliative and acute teams round today, and community nurse on the phone)


So, in all this, I want to thank people for their continued (non-pressurised) support. Energy is low, task-focus is low, got some people want to see, stuff want to write – and will just have to work out what I can! I think people have got used to waiting for me to do Insta/FB updates, and especially these longer updates – I used to ‘like’ every comment – but now I read, enjoy, appreciate, may not ‘like’, and may not reply to DMs that I think I’ve already covered in a public update!

  •  I was doing socially distanced/masked walks with people – but as I’m struggling to walk anywhere … thanks to Andrew and Jane for ongoing visits and support, and Suzanne for dropping by with food and back cushion… of course when COVID lets us, I have my awning/patio heater and firepit – please do come join … and if I improve lots, I want to do a bit of a UK tour so will be looking for spare bed offerings! Zoom calls and #BexParty continue as energy allows … worth suggesting dates/times to me .. not necessarily all that immediate week .. and being flex with cancellations!
  • My cousin Hannah who is liasing with A&J, and my mum (also hoping to get here), and a few other people – and hoping to come and do some more visiting as per Christmas (yeah, she can be a carer, but she’s got some Netflix to catch up on, you know); Lee who is making the most of her ministerial position to be able to make hospital stay more bearable – as will Helen when on site. 
  • My friend Claire has been pointing people in the direction of takeaway vouchers, my wishlist, financial contributions – people say they want to help – so trying to make it easy (including ideas for food I enjoy – esp fancy fruits!) – as can be quite overwhelming coming up with ideas … amazing how much stuff you realise you don’t need when you don’t know that you’ve got years to go… but are things like hydrotherapy sessions and carers may need to pay for, and if I end up not working (looking very likely), a very stripped back income!
  • My other friend Claire who is working on the backend/theme of my website as I tidy up some content (it’s 5+ years since I had a theme change)
  So thanks for all your messages, likes, DMs. I certainly don’t expect the wonderful volumes that I get – and love it when my friends end up randomly talking to each other – reduces the overwhelm/pressure on me … and of course – the big posts come with big responses – but hopefully there’s still a long-haul to go with this, so come along on this crappy experience (keep trying to put my ‘life explorer’ hat back on – ooo, let’s explore what it’s like to stay in a hospice) – read general messages/blogs before sending DMs asking me to repeat myself is super appreciated, funny memes, remembering Bex pre-cancer – and still being Bex with cancer … well, does this tired but thankful Bex make any sense to you…. cos she’s off to watch some Netflix downloaded to the phone!

An Optional Challenge

And also, much as I hate chain/tag people in things – do partake in this that my friend came up with on Facebook if you like (copy/paste/complete, make public if you like) – let’s enjoy some good memories whilst life feels tough! 

Hi Everyone!
Who will join me in the Boost Bex Challenge?
Our beautiful Bex Lewis is having a PANTS time. We can’t take away the illness, but we can make her smile!

When you have 5 minutes, please copy the questions below (some are for our interest & some are for hers)! Fill in your answers – funny or serious, add a picture if you have one, and tag other people who might be interested (but not pressurised) to join: 

I think Bex is: 

I met her: 

I admire her because: 

I love her because: 

[CANCER] Interviewed by @Make2ndsCount ‘My SBC Journey’

I was invited to answer a few questions about my secondary/metastatic breast cancer experience for Make Seconds Count, a charity that seeks to raise awareness and education around secondary breast cancer, fund research, and establish a community of patients and their supporters – for practical and psychological support… and they provided these wonderful ‘comfort boxes‘ designed to manage some of the treatment side effects!

Read the full blog post.


[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:

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


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!:
Cancer Media - Audio

[MEDIA] Discussing being a ‘good enough’ cancer patient with @iamwillonline

I was pleased to be invited to join Will Taylor’s ‘Good Enough’ podcast, off the back of social media content talking about the problematic nature of talking about ‘cancer’ and ‘fighting’.We spoke before Christmas, and this week it has gone live.

Will introduces me in the podcast:

The idea of Keep Calm and Carry On has now taken on a different focus in Bex’s life as she is now living with Metastatic cancer which brings with it a reduced life expectancy. 

In today’s conversation Bex generously discusses her experience with what it means to keep calm and carry on, her honestly around language used for people with cancer as well as end of life preparation.

Like many things in life, and cancer is no exception, we can safely say that when you have met one person with cancer, you have simply only ever met one person with cancer. Everyone’s experience and relationship to their illness is uniquely their own. 

This though is Bex’s wonderfully human, vulnerable and ultimately life affirming story and in it  we discovered a conversation about being good enough to live.

You can listen to the 53 minute podcast here, with discussion about cancer starting around 11 minutes in.



[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.


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.


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:

Photo by Wilhelm Gunkel on Unsplash