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.
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.
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:):
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
- 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 meds, the 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…
- 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.,..
- 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)
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!
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: