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Cancer

[CANCER] COVID Testing and a Biopsy

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…

Thursday: Biopsy

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+…

Friday

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!

Facing Realities

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)!!!

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Cancer

[CANCER] Time for another ‘big op’ – the oophorectomy #BusyLivingWithMets

So, it’s over a week since my operation, and mostly I have been sleeping, sleeping, sleeping, a bit of TV, quite a bit of reading, and a lot of sleeping, interspersed by short visits from a few friends, and Pokewalks around the block… Anyway … bit of a ramble coming up, may be TMI for some people (but might help others going through same procedure later), and warning, is a pic of what I think my op looked like….

Preparing

My mum arrived Tuesday evening, whilst I was still racing to finish bits of work (carried over into Wednesday morning), we made sure I got plenty of fresh air, we did a little run to Morrisons, and then went for dinner at the lovely A Tavola:

That was an early meal, before heading home, parking my car up (as not allowed to drive for around 2 weeks, as surgery is across the stomach, but once I’m safe to do an emergency stop again, I’m good), had a shower with the anti-infection stuff (Hibiclens), and then realised I’d never read the leaflets I’d been given in the pre-op:

Early Start

Unlike for my mastectomy, when I was going entirely into the unknown, this time I had a much better idea of what to expect. I hadn’t just been given horrific news 2 weeks before, it was not my first general anaesthetic, I’ve had many other procedures since then, I was on the same ward, and this operation is designed to reduce the risk of the cancer spreading further/faster (my tumour is fed by oestrogen, and ovaries are the big producer of that, so let’s get rid)….

So 5am I had to ring the Jasmine Ward at Stepping Hill Hospital, that there’d been no ‘big rush’ on the ward, and my operation was still going ahead (more nervous about possibility of cancellation, than of the operation itself). By 5.30am we were in the car, and by 6am we’re all checked in, and my mum has already been sent home. I was told that I was the only one on the list, so would be down first thing, and my mum could check back around 12noon to see if I was back up again.

 

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Well here we are. #oopherectomy day. Only one on the list so about 8.30am, hopefully done by 12ish … def in overnight.

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I made sure I had taken with me my overnight bag, with flip-flops, dressing gown, long-lead chargers for my phone, iPad for reading (in expectation of a possible long wait), PJs, bedsocks, comfy homegoing clothes, some biscuits in case of nausea, some spare change, toothpaste/toothbrush, some tissues, some wash stuff/travel towel, and all my tablets, plus some ibuprofen (as the leaflet said to take your own).

The Operation

After all the normal checks for blood pressure, etc. and chats to check that I knew what operation I was in for (got to check they’ve got the right person), checking the forms (possible side effect, death, as ever), a chat with the anaesthetist as my last operation I threw up all night afterwards – so he promised to go and see if he could sort that, and putting on the lovely anti-DVT socks:

DVT Socks

Then it was time to walk across the hospital, flip-flops and dressing gown on, down to the theatre, where I was checked into the waiting area, and given a 4 day old Metro to read (to be honest, I didn’t really want to know that day’s election progress), with some more checks from the anaesthetist. The surgeon popped into see me as somewhere they seemed to think that I’d said that I had a tumour on my ovary, which might have messed a few things up – and they went off to decide if they were going to remove my ovaries through my belly button or vaginally…

After about half hour it was time to head into the anaesthetists room, with 3 of them all prepared with the UV to try and find my dodgy veins … we chatted about my books, and New Zealand, and well, I don’t know a great deal more after that point, but looking online (and at the scars I have), I reckon it looked something like this (no, this is not me)… and they sucked ovaries/fallopian tubes out via my belly button:

Image of robotic surgery

After the Op

My mum rang about 12.20pm, and apparently I wasn’t up, but by 1.20pm apparently I was on my way back up. I don’t even remember a great deal about being wheeled back up to the ward (to my little side room), but I would have been conscious by that point! Then I had to shuffle across to the bed, where I was left with an IV line in (not my foot this time, but 2 cannulas in my hand), and the oxygen mask on…. as my body now seems to be reacting to hospital dressings, everything was put together with glue (and possibly some dissolvable stitches), so, so long as I can keep any infections away, I don’t even need to go back for a check up?!

The afternoon was a bit of a blur – I could hear my phone buzzing away in the security box – and my mum turned up at some point whilst I drifted in and out of a doze, and various obs were done on me. Mid-afternoon they said if I was eating, walking and weeing, I’d be allowed to go home the same day if I wanted …

The toilet was in the 4-bed ward across the way, so learnt to shuffle my way across there … nurse wanted to weigh the first wee – that was a bit unexpected! And despite them saying no, there was some bleeding… Meantime, I’d ordered 4 different mealtimes, but only was in for one meal – and didn’t get what I ordered … but it was enough to get me home. So around 9pm the cannulas were removed, final obs were done, and I got given my drugs for the rest of the week and was allowed to go:

 

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Goodbye hospital #oophorectomy

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Post-Operation

Very glad to get home, as, although I had a side-room – hospital was very hot, and would have got lots of obs done. My poor mum had come in for what she thought was a brief visit, and ended up waiting all afternoon for me (thankful that have a hospital parking permit at the moment)! I went home in my pyjamas, and with my anti-DVT socks on (they said to take them off after 24 hours, then can use again on my flight to New Zealand), and with a huge pile of syringes….

 

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Ah the sweet sight of home, many pillows – and 14 needles for the next week #oophorectomy

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The syringes were full of Clexane, to be injected into the stomach 9am and 10pm for 7 days, in order to reduce the chance of blood clots/DVT (my treatment, and weight, leave me at a higher risk of this) – she had warned me that the retraction on these wasn’t great, and I don’t think a single one did retract – was thankful once the last one was done as left extra bruises all over the stomach:

Clexane Injection

The other thing is that cavities have been filled with carbon dioxide leading to swelling of the stomach … I was recommended that peppermint tea, liquorice and Colpermin peppermint capsules would help with that… of course anaesthetic blocks you up, but by Sunday was into recovery mode. Was fascinated to look at how little damage had been done considering (5 holes across the stomach, to add to all the mastectomy scars):

Oophorectomy Marks

Post-Op Recovery

My Mum disappeared on the Monday, and I’ve had friends visiting me most days this week (I’m spending Christmas/boxing day on my own, let me know if you fancy popping in). I’ve been making sure that I get out for my Pokemon walk every day (always easier when someone to walk with) to get my anti-DVT leg stretching in, as well as some fresh air. Other than that I’m sleeping a huge amount (not having to worry about work helps), reading fiction, doing a bit of a jigsaw, and just exhausted… it’s been a very long 2.5 years… so am not returning to work til 10th Feb – trying to follow this:

I thought that I would spend the first half of my recovery in front of Netflix (whichI have done some of), in pain, clearing out files on my computer, etc., but surprisingly little pain, just no concentration, etc… anyway, will continue to get better, should be able to drive again by next weekend (honestly, feel like I could now, but anyway…), getting to have mini breaks in the Lake District (the marvellous Rosie’s Barn, courtesy of Suzanne), and to see my parents. I’m not planning on running all over the place – this is all about rest and recuperation, so fit for New Zealand, and hopefully back to some kind of ‘normality’ for work for next academic year – though I’m going down to 80%, at least for next year .. taking Fridays off… and we’ll see what that does to my energy levels, concentration, and just general wellbeing – physical and mental.

Other Treatment

The oophorectomy means that I no longer need to have Zoladex injections (which temporarily suppress ovaries) every 28 days. Everything else continues as before though … targeted treatments Herceptin and Perjeta via infusion every 3 weeks (including tomorrow) which takes about half-day to do (I normally take some form of work with me, but not tomorrow), Denosomab injections every 6 weeks (to strengthen my bones, had that last time), with Exemestane tablets every day (aromatase inhibitor), and calcium/vitamin D twice a day, plus citalopram 20mg (anti-depressent), and a range of anti-histamine/herbal type meds to manage side-effects…. with Doxycycline antibiotic seeming to keep all the horrific skin reactions under control at present… and lymphedema glove/sleeve to keep the skin swelling down.

So, there we are, hopefully not too much to report on this cancer category on the blog for a while, as I’ve got check-ups with oncologist (20 Jan), lymphedema specialist (early Feb), then should be having next scans in late May/June – if they continue being NEAD, every 6 months. Hoping to speak to managers and occupational health in February to sort out what ‘reasonable adjustments’ need to be made for work for next academic year, and how much research/teaching I end up with…

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Cancer

[CANCER] Port/TIVAD Removal #CancerLife

When we first talked about the ‘Portacath’ (Port/TIVAD), there was a suggestion that it could be left in for a long time, “just” with a requirement to have it flushed with saline every 4-6 weeks. The oncologist, however, when I asked about this, said “no, your treatment has finished, and you don’t need it any more”, which is very encouraging! So Monday night I took a last shot of the port still in my chest… I’ve got quite used to it, and I’m certainly happy at how it means that the veins in my arms, which don’t want to give blood, have not been prodded around (aside from the one week where it didn’t want to work!).

Blood Test

So yesterday, I’d been instructed to go for a bloodtest at 11am, to ensure that it was sent of by 12noon. Despite my taxi being late (with local anaesthetic happening, didn’t seem worth risking the drive), I just about made it, and then as often happens with hospital appointments, went in around 11.58am:

Off to Maggies

Once the blood test was submitted, I popped around the corner to Maggie’s, dropped off a few hats that I’d not worn, or unlikely to wear, chatted to some of the staff, got a bit of a nibble and a drink, and met a friend who was heading to Look Good, Feel Better.

Actually I’m in Maggie’s … #relax #cancerlife

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Port Removal

I then headed up to the IPU, where on 1st December I’d had the port inserted (in about an hour, local anaesthetic only, and surviving a potential fire alarm and my tough skin which bent the first port apparently!), and signed myself in.

And now waiting for the op … #cancerlife

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There was a bit of confusion as one person came for me to take bloods, went off to double-check that I’d had them done, whether they’d come back, whilst someone else rang me to say they were looking for me, my bloods were fine, and we could get on with the op, leaving the other nurse looking for me when I disappeared. It’s good to find humour in amongst everything! Me looking a bit confused in the second bloods room:

Anyway, into the small procedure room, where Sam the specialist procedure nurse, introduced himself and what was going to happen – that it would only be 15 minutes and very simple. He then popped out the room whilst I stripped the top half off, and got under the sheet.

Operating table was raised, the blue sheet was placed, in went the local anaesthetic, and the first cut was made… I felt that – Sam said, we don’t do unnecessary pain here, and gave me another needle of anaesthetic (2% lidocaine according to the whiteboard!).

He took the port back out through the hole that was made to put it in, but this time there was no need to make a cut near the neck artery, and aside from having to press onto my neck, didn’t feel anything as that came out. Everything was then stitched up, they said leave it under the waterproof dressing for 7 days, when the stitches will dissolve.

Ready to go

Checking I was OK, Sam popped outside the room, whilst I replaced my clothes again, was instructed to lie still for 10 mins … double check that nothing was bleeding and wasn’t feeling dizzy, then was OK to go!

Ta da … 15 min procedure. Now 12 min wait for cab! #cancerlife

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Taxi home, and flopped out on the sofa with laptop for the rest of the afternoon! Pretty painless, although I needed some codeine last night! Very pleased, by the way, that the blood clots from my nose have stopped, even if the indigestion and the fatigue hasn’t…