So, last blogged about cancer on 18th Feb, and the appointments have continued… before this week, just counselling and zoladex. This week has been a little busier:
Monday: Appt 1: The Christie
This was a very swift appointment – finding a new part of the hospital (officially in the private part of the Christie, but same equipment isn’t it) – and went straight in for echocardiogram:
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She said before I left that she wasn’t seeing any problems, so that was straightforward. Herceptin treatment can mess with the heart, so need to be sure that the heart is in good condition before that treatment starts.
Monday: Appt 2: Stepping Hill Hospital
Via the excitement of refuelling my car, and picking up a few groceries from Aldi (life is really rock-and-roll), it was onto Stepping Hill straight after the Christie – time to meet the oncologist:
For once, I was called in before my friend had arrived, but as soon as she arrived, we went in for a chat with Dr Chittalia, about where we’re going with treatment (thanks Aspa for company).
- We agreed no chemo starting before 18th April (other treatment is still keeping things in check, and there’s still questions over whether radiotherapy first – which will be Wednesday appointment) – it’s reassuring that there’s no huge urgency to start treatment…
- Size of tumour is still unknown, but should be on the scan that I’ll see Wednesday.
- Bone pain/insomnia – manageable but a pain … but because of chemo I’ll have to stop the Zoladex/Exemestane anyway, we’ll return to that topic post-chemo. So hurrah for possibly going back out and back into the menopause again… very tempted by the idea of an oophorectomy – although they don’t hand them out like sweeties!
- For chemo likely to be 4 rounds *need to confirm this, 60% dose of docetaxol, accompanied by pertuzumab and herceptin, the pertuzumab can’t be given without the chemotherapy drug at present (licensing, although a few years ago this was the case for herceptin, which now doesn’t require chemo).
- For chemo I’ll get GCSF injections (a week?) and steroids (day before/during/after)
- We’re still waiting on the appointment Weds, as if radiotherapy can be done in the next 2-3 weeks, chemotherapy will wait, otherwise we’ll go ahead…
- Decision re chemo at Laurel Suite at Stepping Hill (small, friendly) and the Christie (busy, but lots of chairs)… a lovely little chat with the BCNs who perked me up again after a difficult weekend feeling very down, said something about funeral planning – ‘yes you should, then put it down, because you ain’t anywhere near dead yet’!
The chemo/radiotherapy treatments need to happen at different times, otherwise might cause problem with my spinal chord, so that’s why there’s so much to-fro-ing over treatment plan.
Tues: Chemo Planning: Stepping Hill Hospital
I went into the Laurel Suite for the ‘new patient talk’ (yes, I’ve had chemo before, but I had it at the Christie as they had a chair available earlier… hadn’t twigged before that treatment that breast chemotherapy is only done on a Monday at Stepping Hill – different days for different types of chemo). Thanks to Helen for coming with me to that appointment:
- Heart monitoring again (shoes off this time!), and then a cotton bud up the nostril to test for MRSA
- Then it was onto the fun of trying to get a blood sample (or 4) … we have just about mastered this with hot water, a tiny vein below my ‘ring finger’, a butterfly needle, and squeezing a friend’s hands (plus much random conversation – mini eggs was the focus of most of ours). An attempt was made at another vein – no success!
- Once that was done, it was time to sit down for a chat with Cheryl, and go through the various paperwork, some of which as a second-time round we could skip a bit – but it is new drugs. Folder full of advice, and letters oncologist had sent to my GP. We know that chemo date might change, but at least I am feeling more confident about where I’ll be.
- The pharmacist Hannah popped in to drop off some antibacterial shower gel and Niastin, to be used 2 days before portacath insertion (Thursday), and then back with some Dexamethasone steroids ready for the docetaxol (all nicely labelled up with when I need to take them (day before, and couple of days after chemo) … looking forward to ‘Dexy’s Midnight Runners’ again… shame I haven’t got any hallway left to paint!
- For the first round of chemo
- I’ll arrive 2pm Monday, and have the Pertuzamub (for which I’ll be fine to drive, although company appreciated – so long as you don’t have any nasty germs to pass onto anyone.), and we’ll make sure we find the right cold cap fitting, though I don’t need to wear it that day.
- I’ll then have to come back 9am on the Tuesday, with chemo taking around an hour, Herceptin about 90 minutes, and then have to be observed for 6 hours to ensure I don’t have a reaction to the drugs. Not recommended to drive home for that one.
- We’ve talked about the likely side-effects from docetaxol – looking at others on the group, quite likely to be fine for a couple of days, then crash out for a couple of days, then have a day or two of decent days, then stomach starts having a party for second week… then a third possible good week! Who knows though, might be ‘lucky’ on this .. *similar drug last time led to mouth problems and peripheral neuropathy.
- The other rounds of chemo will be done on a Monday, one after each other, and without the need for observation, with three weekly gaps.
So I need to find my chemo bag ready for each week, ensure hospital admissions bag is sorted, and note that bloods that I’ll need to have done before each cycle can be done 2-4pm Friday before (via the port, yay!). Hurrah for pancakes after!
Weds: Appt 1: Port Consenting
I was at the hospital before 9am in order to sign paperwork for having portacath inserted (the one I had taken out last summer – well, a fresh one, obvs). As I’ve had a portacath before, I didn’t need to watch the video, I’d had bloods done yesterday, and used the antibacterial stuff already, and there was a slot, so by 9.15am I was having the port installed (local anaesthetic only) – Svetlanka was was putting it in kept up a lovely chatty flow of conversation and before I knew it it was all done:
I then popped across to Maggies for some comfy chairs as having your main blood vessel attached to a portacath is not the most comfortable thing. Will now leave the stitches/large covering on for 7 days.
Weds Appt 2: Stereotactic Radiotherapy
I headed back into the hospital for 11.30am appointment – and into Dept 22 (newly opened on 26 Feb!), where I sat in ‘Waiting Room Area A’ for 40 minutes (working on my prep for that afternoon’s meeting on grant applications), before being weighed/height (seriously, why does the hospital need a machine that speaks your weight to you … for people with ED, it’s not helpful!).
As time was ticking away, and I had a 2pm meeting wanted to get to at work, I checked where I was in the system – hospital clearly getting used to new systems so running quite late! Around about 1pm, got to talk to Dr Colaco, who’s the specialist in stereotactic radiotherapy (apparently there’s 40-ish radiotherapists trained in standard radiotherapy, only 1 in stereotactic – Dr Colaco has done 60+ in the USA + 6-7 in the UK).
- After some poking, prodding, bending – nice to be referred to as ‘young and fit’ – he did suggest that I should have an appointment with Dr George about potential spinal surgery (not for the unfit, apparently), although this doesn’t sound like the most likely avenue … but it’ll be up to me (after discussions) to decide which is the right option (stereotactic radiotherapy is not an option after spinal surgery, although standard radiotherapy could be done if required).
- We still don’t know the exact size of the tumour, I said all I knew was less than 3cm – he said a lot smaller than that, but the planning will identify the exact size. Apparently it’s also ‘well placed’ so not too close to the core of the spinal column at ‘front of the bone’… will still have to keep an eye out for any swelling on the treatment site.
- The only thing that might hurry anything up is if the tumour has grown, but it seems only to have shrunk in the past year (which was how we knew it was cancer).
- 11th March: I will have a planning CT scan at the Christie at Salford (which is the only place there’s a stereotactic machine, and for which I understand only one patient at a time (or was it per month) gets seen to ensure well looked after)… and I think have a mask made (about an hour). They’ll be some more paperwork to sort on that date.
- 14th March: I will have another MRI scan (about half hour – spine only)
- 29th March: I’ll have the first stereotactic therapy appointment. The actual treatment is only a couple of minutes, but likely to take around an hour for the appointment. 1st and 3rd April for the other 2 appointments, with 5th on standby in case haven’t managed to line up properly on one appointment (it gets really stressful when you can’t line up, and sometimes they have to abandon a slot).
- Short-term side effects likely to be pain, nausea and fatigue (paracetamol for a couple of days should manage the pain – no steroids unless in a lot of pain), unless oesophagus gets in the way (yes, there’s a slight risk of catching bowel/oesophagus, a 20% chance of spine fracture, and 1% chance of myelopathy…. all of which makes signing consent forms quite a big ‘deep breath’ moment).
- The NHS are still assessing the overall benefits of stereotactic, so by default I would otherwise have standard radiotherapy. Non-randomised feedback is that it’s good for treating small/local tumours, and managing pain in the site – they’re still assessing randomised data.
- I’ll have another appointment 6 weeks after treatment to see how we’re doing. There will also be MRI or CT scans at 3, 6, 9, 12 and 24 months.
I made it into work for my ‘Get That Grant’ meeting, headed home, been writing this. Tired, tired, tired! Got work to catch up on tomorrow, not allowed to gym/swim til stitches out, but as the port’s been done, can be a PJ day (and pokemon walk in scruffies)!
When’s the chemo?
Chemo now starts on 15th (and 16th) April, with other treatments 6 May, 27 May (bank hols?), 17 June looking likely! Let’s see where that fits into my overall timetable.
Work are seeking to take mental stress off, and make job as flexible as possible – so I have no face-to-face teaching where I NEED to be in the classroom every week until at least academic year 2020-2021. For 2019-20, I’m currently on the ‘Developing Research Excellence’ programme (2 days week), 1 day a week on public engagement/media work, 1 day of research supervision, and – if we get it, a day on Macmillan project (we’ll hear any time now) – if we don’t get it, something else will fill that slot.
I’ve got an ultrasound on Friday on my thyroid, as something showed up on my thyroid on the full body MRI scan. Here’s hoping it’s nothing, and that it’s one of those appointments that they’re allowed to tell you on the day .. before heading to BCC event for ‘younger women with secondaries‘.
For my birthday last year, it was chemo time! This time, I’m at an event until 3.30pm, and then hopefully meeting a handful of friends in the afternoon for a few cocktails – message me if you want to know more!
People keep asking what I want … not usually good at saying, but … well I’ve been decluttering like mad – but here’s some ideas on Amazon – Netflix vouchers always good! More fun would be to suggest days out, meals out, hot choc, options on visits/walking company (I love a bit of company, but a message to see if I’m up for a visit/not working, etc. is always appreciated), if anyone fancies tackling my garden, house is making progress (and mostly requires £/professionals), and after years of being on short-term, part-time, low-paid contracts, electronics, etc are gradually being replaced! *Oh, and I need someone a bit taller than me to finish tiny bit of hallway painting…
And did I mention I’m on Radio 4 on 27th March (and seeing oncologist again 18th March, with a port flush).
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) 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.