Another week, and a whole lot more cancer stuff going on … Last week I found that I’d finally got my appointments! So, this week:
Tuesday: COVID Test
It was an early start (for me – the pregabalin I’ve been given for pain relief has been knocking me out) – at The Christie for 9.20am. Freaked out the person doing the questions/temperature checks by saying that I was coming in for a COVID test – but I said it was precautionary, before my (aerosol producing) procedure. I was called in pretty much on time and:
- Given a specimen pot – this was unexpected – and then told to spit in it, and spit some more, and some more … they said they wanted a teaspoon of spit – I couldn’t quite manage that much but anyway …
- Given the swab with cotton buds up the nose and to the back of the throat (managed not to be sick, though did gag) … and then told to go.
- Told I’d have the results within 48 hours… which considering was coming in for a procedure in less time than that was … interesting.
Went home and pretty much forgot about that.
<edit-add>. If it had been positive I would not have been able to have my procedure, though there was talk of everyone having to be in full Hazmat suits anyway as ‘aerosol producing procedure’, but everyone was in normal scrubs/blue masks…
An even earlier start – I had to be at The Christie for 7.30am – thankful to Andrew who got up and dropped me off there. He said he would come in with me as far as they would let me, but I said – stay in the car – they’re not letting anyone other than patients past the front door!
- Walked to the IPU, checked in, and took my seat (many seats were ‘crossed off’ for social distancing.
- After only about 10 minutes, was taken into the ‘bloods room’, where it (only) took 2 goes to get into my port to send some bloods off for testing (there’s an hours wait for this), and then dealt with a range of other questions and obs, before being sent back to sit in the waiting room.
- Once someone was happy with my bloods, I was invited to take a wheelchair (I always find this odd, I’ve not had the procedure yet – I could walk!) and we zoomed across to the other side of the hospital.
- Once parked in a bay, get asked to put a gown on (I call it a gown, but it didn’t even vaguely meet in the middle), with a second gown for ‘dignity’!
- Various nurses come and ask me questions about which procedure I think I’m in for, what I’m allergic to, etc. (bit of a blur all that).
- The Dr comes out and gets the ‘consenting forms’ out – doesn’t have death at the top of it – although he does say that he’ll be working near a major artery and my lungs, so in case he slips (nice)….. and makes sure I understand why I’m having the procedure (we need to know what receptors this tumour will respond to so we can get the treatment right).
- Another nurse comes with a massive bottle of liquid – it has the contrast in it that I need to drink before going in the CT scanner – so that they can look at my whole body through the scan … I think I have to drink this litre plus (as does he), but the Dr says he’s happy when I’ve drunk two cupfuls – as he doesn’t want me being sick from drinking it (it’s got a weird aniseedy taste).
- I get wheeled into the CT scanner room, then have to get myself into position, whilst various staff introduce themselves to me, put a cushion under my knees, get my head/arms into the right position, etc. and explain what they are going to do.
- First: it’s the CT scan with contrast – the contrast runs in through my port (hurrah, no need for cannulation), and I head into the machine – do the breath holding exercises, and the contrast does the expected thing of making you feel like you’ve wet yourself…
- That CT scan had also served as a planning scan for the Dr, so there was a short wait as he sorted himself out, and they wheeled in an ultrasound machine to help get a more precise job done for the biopsy.
- A screen was lifted just about in my eye view above my head, and the. Dr asked if I wanted to know what was on the screen – yes – pointed out my heart/lungs, etc – and the ‘lesion’ – which he said was around 3cm (across, I assume) – first time I’ve heard a size and not sure whether that’s good or not – but it’s the top size for ‘oligomets’ so maybe it’s still small and manageable?
- Then I was covered in various operation, sheets, etc and someone came to talk to me at my head, the local anaesthetic went in, the ultrasound gel went on, and I was told that the ‘snapping’ noise (like a piece of plastic being cracked) was the biopsy being taken (from the bone) – he took around 8 by which point they seemed to think that they had viable samples (one of the warnings on consenting was there was a percentage of times it doesn’t work, and have to come back again).
- Then a plaster was applied and things cleared away, the bed lowered, and helped to sit up again – found all my scattered items (from my locker, glasses, boots, etc.), and was put back into a wheelchair and taken back out to wait for a nurse to take me back up to the IPU.
- In the IPU I was put into a recovery bay – I thought it was going to be for 4 hours, but they said 1pm was fine (so just over 2 hours).
- I was brought hot chocolate and toast for post-operation (yum), and sat in a chair, worked out how to kick my legs up, and a mix of chatting to the nurses and checking my phone passed the time well.
- Thankful to Jane who then came and collected me, provided me with more carbs in the shape of crumpets and Nutella, and a chat – before I went and put my PJs on around 2.30pm and got into bed – and dozed and watched Disney+…
It’s been a lazy recovery day for me today – feel quite fuzzy, didn’t sleep well last night, quite a lot of pain in my non-mastectomy breast which is causing extra worry and conversations with BCNs, but we’ll see what the scans have to say, and assess it all on 29th – when hopefully I’ll have a face-to-face appointment to be able to see my scans/ask questions – and get my next treatment plan. In the meantime, I have signed off work again til 1st August – aside from anything else I’m trying to deal with the pregabalin – apparently it takes 2-3 weeks to adapt to it – but for now I’m dozy during the day, then half-awake at night!
When I had my primary cancer diagnosis, I thought, loads of people get this, survive it, and get on with their lives – it did draw me up short, but mostly I was still pretty optimistic that I could return to some kind of normal life. With the secondary cancer diagnosis, that shook me up quite a lot more, but there was so much optimism that we’d got it all, and that I had a decent chance at ‘living well’ with ongoing treatment for 20-30 years. The treatment coming back from NZ felt hard work – and I questioned my quality-of-life when I was ‘NEAD’ (I thought), and had cancer controlled, but still felt rotten … but aside from the treatment side-effects, my body has clearly been hard at work growing this new tumour, so – no surprise I’ve felt rubbish. This new tumour has knocked me back off my feet again (I hadn’t expected it again!) .. and it leaves lots of questions about prognosis – people have lived with secondaries worse than mine for 10+ years (get me trying to sound optimistic, when I’ve pretty much lost faith in my body’s ability to keep cancer away after 3 diagnoses in 3 years) – or another tumour can pop up and make the situation worse again … I’d already reduced my working hours by 20% so I can have my ‘retirement’ on Fridays, but this really feels like it’s raising more questions about the chances of getting to retirement (I’m still 27 years off that officially) … and making me think about what life needs to look like. Am chasing up questions about ill-health retirement, but at present feels like it’s not the right time to ‘retire’ (nor have I the £), assuming that treatment may yet keep me stable for some time yet – if you know me you know I’m not good at sitting still – and this diagnosis brings me the dilemma of ‘I’m tired, and the side-effects suck and I can’t manage as much’, and ‘I want to get stuff done because life feels short’.. and I said I didn’t want to die til I was a Professor … (we’ll see if that desire remains)!!!
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.