Well, so much for getting at least 2 years, and hopefully 5 years on Herceptin and Perjeta. Apparently the cancer is back – and this time it’s in my sternum and chest lymph nodes – to be honest I haven’t got loads of information in my head as, after the clear bloods/X-Ray scan from New Zealand, and the insistence that the pain I was feeling was torn chest muscles, I thought it was going to be a straight ‘yes, it’s fine’ appointment, but nope, once again, I can’t catch a break.
Full Body MRI Scan
I went into the Christie Friday 26th June, with the warning that can’t take anyone with you, will need to wear a mask, and follow the one-way system through the hospital. Andrew dropped me off/collected me, as I found this particular scan quite stressful last year (it’s 70-90 minutes in the machine) – and look at the kind of thing you get strapped down with (although I don’t think I had anything on my legs):
I had my face on from having done a recording with Australia in the morning – and was very thankful just to chill out once Andrew collected me, and then let me crash out at my own house for the weekend.
As ever, there is always scanxiety in between the scan and awaiting the results – mine were booked in for Monday 6th July … but when I logged into my work email on Monday morning (where I’d been corresponding with my oncologist’s secretary from New Zealand), there was a message (sent about 2 hours after the scan) saying my phone didn’t seem to be working, and could I come in Wednesday for a face-to-face. I immediately felt my heart-rate rising, because face-to-face is where they like to give the bad news (although, honestly, in some ways I’d prefer having it on the phone, talk to friends, and then go in and ask questions – because all you hear in the appointment is ‘tumour’ and ‘progression’).
Dr Chittalia rang me back very swiftly afterwards to say that he’d not yet seen my scan results (would be record timing for the number of images that need interpreting), but that as he’d not seen me for a while, and considering what had happened in New Zealand, wanted to check in with me. So, after around half-hour my heartrate settled back down again, and I carried on getting on with my work.
What’s Going on With My Port?
Unfortunately not the drinking type – my portacath. I had my regular treatment on Monday, and instead of the port needle popping straight in, it was 60 minutes and 3 attempts to get it in (and yes, that’s needles going in – deep breath each time). Thankfully the final one went in properly, and blood could be drawn, and the drugs could be infused in. You may not know that nurses are only allowed 2 x attempts at needle/cannula insertion, otherwise they have to pass to someone else to have a go (and I was once sent off to my CT with(out) contrast because no one could get a cannula into my useful veins… and the Stepping Hill scanning machines are not set up for using a port.
The Bad News
Wednesday afternoon, after a busy morning working on funding bids, I headed into The Christie – following the one way system, with masks on, and going through the Q&A/temperature check area first before being allowed to go to the rest of the hospital…. and then trying to remember where I was going, as I hadn’t had a letter – thought it was Department 1 (it was), but obviously didn’t want to be sat in the wrong place.
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Obviously much less people in the waiting area than possible (no friends unless clearly frail), all the tables/reading material gone, and seats spread out. Realised I was quite dehydrated, but wondered what I thought about using the water fountain in the corner (all these weird decisions, that were not there pre-COVID19), but hoped that I would go straight in, then pop out to the chippy over the road (I’d not eaten much more than cereal and Tim-Tams either). But no, it was 45-50 minutes til I was called in, and then a bit more time waiting in the room.
Dr Chittalia (with face screen/mask/gloves on) asked me how I was doing since I’d got back from New Zealand, talked about my fatigue/lack of energy, my low mood, and the fact that the pain hadn’t gone from the chest yet, but now we knew that was a pulled muscle, right …. at which point Dr Chittalia said that ‘no, something’s showing on the scan’ – everything’s a bit blurred from that point, but I heard the words ‘sternum’ and ‘lymph nodes’. Dr C disappeared, and sent in a nurse to help me whip my top half off again (she was wearing a mask/gloves), by which point tears were pouring down my face again (shock, disappointment, fed-up, fearful), then came back to have a poke around (and yes chest does feel tight/like something pressurising it, plus all my scars have a painful pulling sensation). Clothes back on, and nurse stayed holding my hand (gloves on), whilst Dr Chittalia explained a few more things, of which I picked up:
- I need a CT with contrast, and this will be done at the Christie, so I don’t have to worry about cannulation.
- I need a biopsy (probably of the sternum), to double-check the cancer receptors on this tumour (although all tumours are ‘breast cancer’ cells, the first set was Oestrogen and Progesterone responsive, but not Herceptin responsive, whereas the second was ‘triple positive’, so responds to all three – this was seen as positive, as gives a lot of options for drugs). The Christie then wanted some bloods for this, so my port was accessed again (took 2 needles this time) so they have some on the system.
- Dr C has appointments every Wednesday afternoon at The Christie, so I’ll be back there on 15th July for the results of the above 2 tests and decisions about what else is needed. I definitely heard him say a likely move from H&P to kadcyla (or whatever it’s non branded name is), another infusion every 3 weeks drug (no hair loss), radiotherapy is highly likely, I’m sure I heard the dreaded possibility of chemo in there too.
Macmillan Specialist Nurse
Emma, the nurse sat with me until the specialist Macmillan secondary nurse, Claire (had to ask again about 45 mins in, as couldn’t remember) arrived. Claire is the promised specialist secondary nurse every one of us with metastatic cancer should have from our (new) diagnosis, but there’s not enough in the country. I, however, will be moving all of my oncology check-ups to The Christie (though I can carry on having my treatment at Stepping Hill, which I will, because they are fabulous and friendly – Christie staff are too, but people move around departments super fast, and you find yourself explaining yourself AGAIN!), and so I am now entitled to access these nurses.
We talked for over an hour (went speed walking to the pharmacy gone 5.30pm, because they shut at 6pm – and they brought the meds out around 6.25pm!) about all kinds of things, especially about how I’d felt on first diagnosis (loads of people have breast cancer, treat it and try and get on with life), secondary diagnosis (sad, but that the drug that was being suggested should work 2-6 years, and plenty more after that), and this diagnosis ‘feels a bit like it’s ‘the end” (it’s not yet), fed up, frustrated, ‘I just want a break’, I know there’s other drug options, but possible side-effects, and having ‘burned through’ the first treatment line – when the NHS often won’t let you go back on treatments – and yes, with access to NHS treatments only, my life expectation is shorter than those on private treatment (and COVID research hiatus means less trial drugs in development) – hence why I’m involved in METUP-UK).
We then turned to practical things to do, including pain management (morphine (didn’t realise this could make me vomit), paracetamol, ibuprofen – there’s a lot of pain around ribs/mastectomy site), with a check-in next week (and yay, have an email address, not just phones), psycho-social support (I’ve got a counselling appointment psycho-oncology next week, due to be one of my last couple, but yeah, that’ll get extended), what I might want to talk to Maggies about, how my GP can support more, and how I can find support regarding what might happen with my job/access to work. I’ve already dropped my working hours to 80% from September (and most of August is booked as leave) – (although I sometimes pick up reviewing/bits of writing), so I need better understanding of what constitutes a ‘reasonable adjustment’ that may offer more flexibility – but anyway, my phased return to teaching in September looks like that’s going to be delayed again as I adjust to new treatment… and we had rather a depressing conversation about finding out what I’d be entitled to for medical retirement (we’re not there yet, I don’t feel), and how PIP can continue to support me.
*If any of my friends can read pension material, I’ve got some with USS, and my current pension am paying into is TPS – it’s not clear what I’d be entitled to?! Meantime, I’ve still got a house to pay for, a bed that quite urgently needs replacing, and a laptop that’s randomly rebooting (life’s too short to have such a slow machine!). Like most people at present, not using a whole load of my clothes/shoes/petrol!
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My eyes are rather sore, but I have good people around me, and hopefully more opportunity for #BusyLivingWithMets. Not NEAD this time, progression to sternum/lymph nodes – need biopsy, CT scans, probable change of treatment. Scary to burn through first line of treatment so quickly. Why @metupukorg fighting for policy change and better funding for secondaries … COVID19 is really not helping in all this …
I chatted to someone very friendly (who works on the Proton beam, and grew up near me in Sussex) whilst we waited for the prescriptions, before stopping for chip-shop-chips on the way back – and headed to my bubble (Andrew & Jane), before drove home, cried some more – went to bed – and didn’t sleep!
Well, my head is mostly a jumble – and I appreciate those of you who wait for me to update publicly so I don’t have to keep repeating myself (DM/PMs are lovely with no pressure to respond, esp with care and prayers), and looking for ways to keep my mental health balanced by talking to people, watching TV, sleeping (mostly chemically induced at present), doing some financial rethinking, life thinking… that 20+ years they said last year they were really optimistic about – has that gone? Taking Friday’s off is to give energy and also ‘early retirement’ in a small way, as may never get it … but…
I’m fed up, I want a break from it all, I’ve got deadlines for work that I still want to do (if I could pay off my mortgage/have enough to live off – I’d carry on doing the research parts of my job, and public speaking)… though some may end up slipping. I’ve been booked off work since Thursday and suspect may end off til I’ve had the results back and a bit of a time to digest that.
*Sometimes people want to get stuff – cards are much appreciated, loved my flowers/cheese/choc from my neighbours this week, and I chuck some idea here – or chatting to me online (be prepared for me to bail sometimes/it’s not tied to a live calendar) and #sociallydistanced walks (esp if you can suggest places that aren’t Reddish to meet at).
*Will probably think of something else as soon as I press ‘upload’!
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.