The last few weeks have been hard work, to say the least … once again gone from working on a big bid, getting on with some writing (including a piece on using blogging to manage cancer, and wondering what might write about as treatment becomes more ‘routine’ – ha ha ha – I wish for routine!) to the uncertain jungle of changing diagnosis, new tumours, new treatments and fear as cancer punches me in the face again… Last time I blogged, I’d had Friday’s radiotherapy, and had a weekend to chill… and here we are back to Friday again… so it may not be my finest writing, but let’s get some updates out of my head!
The weekend was mostly dozing (on my lovely new bed – thank you to friends who said ‘we may not be able to help much physically, but if we can help you sleep’). Face was still puffy, got stressed about my website being down, but we got it back up – and I’m playing around with new themes and wondering if I have the brain space to tidy it up 🙂
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Went for a little walk – originally just to the Post Office, but all the way to the church!
Back into the Christie for 5/5 radiotherapy – nice to be whizzed along in the wheelchair by Ben, who usually does much Macmillan work, but is largely keeping us safe/portering (no need for the gym these days – and boo – I’ve had to cancel my gym membership – I miss the pool) – different suite today, but same lovely staff – and we were fairly swiftly done. A reminder that the treatment will keep working over the next couple of weeks – possibly more discomfort/tiredness/redness (got away without that so far) so keep a bit chill (like I know how to chill)!
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The guy who dropped me off at the transport desk may have miscommunicated with them about where he left me – he left me with a nice view, rather in the normal dark corner next to the cash machine. I was watching a couple of ambulance guys outside waiting – I thought might have been for me – it was – well, I hadn’t moved (and I had my phone) – but after about 20 mins they found me, and got me home again 🙂
My mum has done the long drive across from Suffolk to help out for a bit … (she’s not a fan of Manchester roads, so even more appreciated) … and yes, I may have wailed and railed against the unfairness of this mess – lovely to have mum’s hugs – although of course I have my bubble family hugs too – so I’m lucky in that respect!!
Lovely to get some messages from those filming at Boughton House for Greenbelt – been prayed for today – look out for the bank holiday programme from home – only £10!
Mum’s job is to look after theirs kids, right (to be honest, I was thinking by this age, would start to be the other way round) … so we’re working on sleep, short walks, good food (there’s been a lot of sugar in the house recently, which is fine to an extent, but my body has been craving some nutrients), tidying the house up again … and yeah, just being the person you can be grumpy and sleepy with!
Also, we’ve sorted out for Weds 12th, a chance for a chat with Andrew Graystone (part of my bubble family) – he’s doing some lighthearted Zooms related to his new book ‘Faith, Hope and Mischief‘ – if you contact me, I’ll give you the login 🙂
Even got a chance to watch Holby live – unusual these days – and a bit cancery TBH, but at least it’s not actually my life – and I’ve some empathy with Essie!
It was back to the Christie for an appointment with the oncologist – they’re doing a lot of these appointments on the phone, but partly because I wanted to see my scans, have a deeper conversation, and we needed a blood test to make some decisions about next treatment….
-edit- draft had deleted – reminder that the hospital admission last week was because
1) Tumour in lymph node squashing vena cava (3 main veins, I think)
2) Blood clot in jugular vein needed treating – combined – leading to fluid build up/breathlessness -end edit-
In at 2pm for bloods – bit of a debate about whether they could cannulate because ports are more work for them, but thankfully they went with the ‘I have a port because cannulation is a stress’, and that was soon done, and it was sit and wait an hour for the results to come back…
Sent into the consultation room around 3pm, where I sat for around half-hour watching Dr C popping between other rooms, and the nurses did their checks. If the Stepping Hill and The Christie scales are anywhere near equivalent/correct, since admission to hospital around 10 days ago, my body weight has dropped around 7kg – and you can clearly see that the fluid has been disappearing from my body/face – which I am super thankful for… I still appear to be 162cm tall tho..
In my head, as there’s been so much pain across my chest, it has felt like my whole chest area has been taken over by a tumour – I don’t think that’s so – and thankful to those who are trying to explain my CT scans to me, but TBH I’m not entirely clear which is tumour (told is a mass pressing onto sternum, and maybe some cracking on the sternum – hence the opiods and other painkillers). When the biopsy was done the other week, they did it near the bottom of the rib cage where there’s a lot of pain/bruising/tiger marks – but apparently that’s not where the tumour is! Anyway – left-hand side is where I’ve had a mastectomy so yes – that’s my breast tissue at the top … darkest colour is lungs (with cancer specks in the lymph nodes?), central area is heart, whiter areas are bone, greyer areas I guess a mix of tissue, fat, tumour… (I thought the darked grey behind the sternum was tumour)… obviously when he showed me on the screen, it goes all the way down the body, and I only got one screenshot
I said to Dr C that over the past few weeks I have developed a lot of pain in the right shoulder/right arm, as pain has been disappearing from other areas, and as my breathing has been coming back to some extent. He said that the original CT scan did show a possible inflamed lymph node (cancerous?) in my right armpit so that is causing that problem (pain, and pins/needles) – peripheral neuropathy – but hopefully more treatment will deal with that too (though it might bring it’s own new side effects).
Advice from Dr C:
- We’ve done full radiotherapy on the whole sternum area – it’s not just the lymph nodes, so we’re not doing more radiotherapy for now. Breathlessness/fluid loss should continue to improve, although irritation could continue for a couple of weeks and DON’T FORGET THAT RADIOTHERAPY IS A HARSH, TIRING treatment!
- Wants to get chemotherapy going into the body asap, and further biopsies have confirmed that the tumour is triple negative (waaah, a move from triple positive – it means that it’s hard to treat, and typically have to try treatments, if they work, we keep going – I try not to look at the stats too much as they’re quite dismal, but only 10% lasting more 5 years is not unusual … bit different from last year’s ‘just oligomets, we’re really optimistic’ – as someone told one of the Nolan sisters last week – I’m still in shock at how-fast things have gone downhill) – so we’re onto paclitaxel (which I did have for primary treatment – I think quite survivable, but I got more and more tired every week, with mouth going to rubbish) for 18 weeks, then a scan, and we see whether anything is working.
- I have until treatment starts 10am Monday morning (back with the lovely nurses at Stepping Hill) to decide about the cold cap, but I’ve already decided that I think I’ve given that a fair crack of the whip. Hair MIGHT not fall out, and if it does, the wigs are coming back out of the attic, and let’s rejuvenate the hats. Should this treatment work – we may just keep going on with it every week, so the thought of cold capping for 9ish weeks, maybe, forever – nope – especially as can’t have anyone with me holding hands for that first 20 mins of pain! I’ll probably be in the hospital for around 3-4 hours at least every Monday …
- The dexamethasone steroids I’ve been on I’m able to halve this week, then halve again next week, then stop – all helps with the sleeping hopefully (although I’m still downing the Zopiclone and morphine at night for now…)…
- I’ll have to continue on the blood thinners for 6 months – clexane self-injections – not usually one to show pics of stomach – but hey – look how my body is keeping on going under this onslaught (and got a tip from a friend for some cream to help manage the bruising):
- My head is obviously full of prognosis, what about work (should I retire, etc.) but Dr C said it’s not really time to talk about this yet. We need to get the chemo going, be patient, and see if this works. People try and encourage with ‘oh, I’ve been on that drug for 16 months’, but at age 45, 16 months doesn’t sound long – I want to be talking years (and good years, not pain-filled years). We’ll do a scan in 3 months and if it’s working, keep going, and hopefully be finding ways to manage the side-effects and see what it’s doing to pain, concentration, etc. etc. If ever there was anything to make you focus on trying to make the most of NOW …
- We popped across to Maggies afterwards (obviously my mum wasn’t allowed into Christie), where I wept upon Lisa again, and said big fears are clearly 1) treatment not working 2) finances 3) quality of life 4) loss of independence … but that’s partly what they are there for … so arranged a phone call to come from finance team. Maggies have already helped me get PIP thankfully, which has made a huge difference ..
All I have wanted for a few days is some sea air – not seen any since left Long Bay in New Zealand … so we drove across to Talacre (which we thought would be a bit less busy than Formby/Crosby, and if we went Thursday – less than the promised sunny weekend!)… and oh yes:
Enjoyed a paddle, a breeze, reading a bit of fiction (and oh, I wanted a dip, but thought that was maybe pushing it going from 2000 steps to swimming!), an ice cream, and some dopey dozing on way back… was super tired on return, but still half-awake all night (pft).
Still super-grateful to come back to my new bed (thanks to those who helped buy that), and appreciating my regular waves with the postman and the Amazon delivery with remembrances from friends – really does lift the spirits! My mum if working on getting the house clean (cleaner we hope can restart next week anyway, using PPE – get that mental/physical health balance, managed risk), emptying out food I shouldn’t be eating (see p18/19), making a few bits and pieces – freezer is currently rammed, but appreciated offers of forthcoming food, have had some from byruby and Cook (and some more vouchers for Cook). I’ve been doing quite well with getting deliveries, and I know people will do collections/drop-offs of food for me (it’s challenging getting the right £ minimum order/fresh food, etc.) … annoyingly I can’t now have the delicious yoghurt that my milk delivers (can’t have live yoghurt) so will be sending people for greek yoghurt with honey pls, or Aldi’s Salted Caramel!
Trying to be less proud, I’ve put a few ideas on wishlist – who knows there may be crowdsourcing for mortgages/treatment to come, but for now trying to Keep Calm, Carry On, be sensible, not be too bitter about the bashing my income is likely to take, even if I manage to keep working/well … it’s too early to make all those kind of decisions…. and of course lots of people are going to be affected by COVID too (thankfully I have years of living on student budgets). I have been asked if I’d rent out my spare room – but really – last thing want at present – and if COVID could get in the sea, I want friends back to visit (and will still be looking for ways to safely do socially distanced walks, chats from the end of the garden, visitors who’ve done risk-management isolation, suggest times for more online chats, etc.) – and be prepared for me to be tired and flakey with arrangements… oh and I’m rubbish with stuff in my garden so I am never going to complain at people sorting that out (I joke about having a garden makeover team in, it’s not that much of a joke sometimes)! I have dared to order a gooseberry bush, and hoping to see cherry fruit next year, right?
In two minds about charitable stuff – have suspended MOST for now so if people looking for new charities to support… part of me wants to continue paying it forward, but also being sensible right now …. and not forgetting that metastatic cancer research is very underfunded already…
I had counselling this morning – more tears – and a lot of encouragement to realise just how tough the last couple of weeks have been – with serious threats to health, changes in diagnosis, hospitalisation, steroids, radiotherapy – all in the unfriendly environment of COVID … we’ve done a lot of ‘work’ on trying to be more present (my default is to try and get organised, plan ahead, and things just keep knocking me off my feet too fast!) … one of the conversations had been about ‘blackberries’ and that being the only thing to do one day (it’s v weird at the moment – can take all day to manage a 5 minute job that used to do before work) … so me & my mum headed of to pick some more blackberries (so now a couple of crumbles squeezed into the already overstretched freezer) round Reddish Vale – got LOADS more than we expected – though had to stop and try and deal with the arm pain (stretch, wave, pull – nothing really seems to win!)..
Came home to a call from one of the lovely financial people from Maggies, where we talked about where I’m at at present (I think I went off sick 1st July, but I’ve 6 months full – never used my full allowance so far, but I guess that’s what it’s there for)… and what might be there should I disappear off the payroll – I’m sure I’ll never be short of things to do (and I still want to get my book/papers done, and I’ve a couple of funding bids still in process). I know I need to chase up details of where I’m at with pension (unfortunately with academia I would have started late/low pay, but apparently if need to take ill-health retirement could be better than expected)…. all just requires headspace. And today: counselling, clean house, blackberries and blog (cos my life is so interesting – anyway – helps me untangle my brain, and people say it helps).
And we’ve just had a beautiful pizza (I had to ask my freezer for yet a little more space as not finished that either) al fresco (it’s quite warm, isn’t it):
Thinking about life & death
This last week or so has brought death swinging back around a lot into my head – but encouraged by reading books by Jennie Hogan and Fi Munro (who has just died 5 years after an ovarian cancer diagnosis) to use that focus on death to focus on life (as ever) – and of course Dr Kathryn Mannix. I’d done my will, some funeral planning (though would like to sort out my plot – that’s confusing), and my power of attorney is just waiting official certificates in the post. I really want to encourage people to think about this NOW, rather than waiting until death is poking around the corner – if COVID has taught us nothing – it can appear swiftly … and I’ve friends trying to live with cancer, who’ve ended up dying in an accident, so…. Kathryn Mannix talks about the distress of being in a room with families who have not dared to talk about it ‘because it seems to make it real’ … but honestly – 2 certainties in life, right – death and taxes!
I’m not ready to go yet, but I LOVE this picture… and mostly I just want to SEE people (though getting back to New Zealand, see my Winchester/Portugal/Jersey families, and Prince Edward Island would be ace – along with these other ideas (inc NW) that I keep popping on)… so let’s pray for COVID miracles…. and for cancer charities to be able to get back to undertaking research because we’re losing out on new treatments!
*If there’s some extra odd bits in this blog post, somehow or other managed to do a combo of save/overwrite and have had to go back through previous versions to try and find what I’d written.
Dr Bex Lewis is passionate about helping people engage with the digital world in a positive way, where she has more than 20 years’ experience. She is Senior Lecturer in Digital Marketing at Manchester Metropolitan University and Visiting Research Fellow at St John’s College, Durham University, with a particular interest in digital culture, persuasion and attitudinal change, especially how this affects the third sector, including faith organisations, and, after her breast cancer diagnosis in 2017, has started to research social media and cancer. Trained as a mass communications historian, she has written the original history of the poster Keep Calm and Carry On: The Truth Behind the Poster (Imperial War Museum, 2017), drawing upon her PhD research. She is Director of social media consultancy Digital Fingerprint, and author of Raising Children in a Digital Age: Enjoying the Best, Avoiding the Worst (Lion Hudson, 2014; second edition in process) as well as a number of book chapters, and regularly judges digital awards. She has a strong media presence, with her expertise featured in a wide range of publications and programmes, including national, international and specialist TV, radio and press, and can be found all over social media, typically as @drbexl.