Categories
Cancer

[CANCER] Yes, It’s Back Again :-(

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):

You can see my face before (12.20pm) and after (1.50pm) in my Instagram post:

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.

The Panic

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 useless 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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Time for #WaitingRoomFeet … scan results. #ChewsFingers

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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:

  1. I need a CT with contrast, and this will be done at the Christie, so I don’t have to worry about cannulation.
  2. 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.
  3. 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!

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!

What Next?

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.

So yeah:

via GIPHY

*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’!

Categories
Cancer

[CANCER] It was another #waitingroomfeet morning

It was an early morning in Department 38 at the Christie (8.45am), and I was there ready for a MRI scan, including that mask that was made on Monday, to help get measurements for the stereotactic radiotherapy. Radiographer from Salford Royal was there, and we had a chat before the Christie radiographer came through (I’m not sure if I’m using terms radiographer/radiotherapist correctly!), when I sat and read my phone til they were about ready (9.15am).

 

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Time for an MRI scan .. half hour ish scan #whatcancerlookslike

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Lovely friendly team, after being called Rachel (well, it begins with an R), radiographer from Salford Royal said that although his name is Achilles, people call him Hercules (he’s Cypriot)! They explained what was going to happen, got me as comfortable as possible, and then the mask went over my face.. a brief moment of feeling a bit claustrophobic as I was clipped in, and then the headphones went on (1980s music this time, starting with Rick Astley – Never gonna give you up), and I closed my eyes and tried to relax…. Every now and then I’d hear ‘that scan is done, now a 7 minute scan’, until we got to ‘last scan now, 12 minutes’, and I was out and took a big breath of air as they took the mask off!

Was a little more wobbly leaving than I expected, so went and sat in Maggies (as I remembered having walked down a different street that that was where I’d left my car) and a chat, a drink, and a slice on melon there, I felt ready to move on!

 

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Taking a 15 minute breather after that scan. Another one down. #whatcancerlookslike

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I went into work to discuss the implications of the Macmillan bid not being accepted (we think it’s strong, and hopefully the feedback will indicate ways to give it another opportunity somewhere else), and it is agreed that next year, in between any sick leave/appointments, I’ll work on research publications 2 days week, research bids and media engagement 2 days week, and 1 day a week on research supervision that can be done via Skype… I will want to go into the office at times, as it’s lonely at home (note: I’ve never argued that online is a replacement for face-to-face contact, very much that it’s different!)… before meeting a friend, and getting side-tracked by Irregular Choice – some more options for future #waitingroomfeet. 15,000 steps later, very tired, crashed into bed – although falling asleep does not regularly happen that fast, nor do I always stay asleep…

Categories
Cancer

[CANCER] Undergoing a full body scan for Spinal Metastatic Breast Cancer

At the base of my post the other day, I said that I will definitely be having stereotactic radiotherapy, assuming that a full body scan confirms the size of my tumour, and that there are non anywhere else (they have done a lot of scans, so I don’t think they’ll be expecting to find anything new) …. this is essentially a baseline scan, and then I think will be repeated around every 3 months, although they said could be spread out more if periods of stability are good (so previously, I was told NED (no evidence of disease), but people with secondaries seem to say NEAD (no evidence of active disease)).

I’ve had a few MRI scans, so I thought I was prepared for this one, even though I knew it would be a lot longer than previous ones (an hour or so was the information given). So I had clothes with no metal, my earrings were out, easy kick off shoes, etc. :

 

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Going in for an hour long scan. Just time for #waitingroomfeet

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Very nice team, who called me in at 6.10pm (my appointment time). We quickly went through the paperwork (no risk of death on this form!), put my items in the locker, and I think was getting onto the machine not long after, I’d say 6.25pm latest. I hadn’t really registered that I would be strapped in to this extent (this isn’t me, but this is similar – my head was the other way up, my knees and below I think were free, and I had a lovely mirror over my face so I could see my mouth/nose, and down my body).

The ear plugs went in, the headphones on with some 70s disco (I was offered a choice, and just asked for something poppy!), and in I went. I spent the next 60-80 minutes been shunted backwards and forwards, with various beeps and bangs surrounding me, and frequently having to follow the instruction “breath in, breath out, and hold…”. Probably around halfway through my shoulder started to hurt, and the whole process tried my patience quite somewhat… ended up with tears sliding out of my eyes with about 10-15 minutes going (I was told I should have pressed the buzzer, but to be honest, just wanted it completed, but maybe next time I’ll ask for a halftime break! This was my face afterwards… (the time as I left the room was 7.50pm). I don’t know if it was the stress, the reality that this is now my life, or too much time to think (been keeping myself busy and distracted with work, friends and house stuff!

To be honest, it’s a small price to pay for keeping the cancer at bay, but will be thinking what can do to make the process easier next time – think I need talk radio – I love Kate Bottley (and her approach to life), so maybe Radio 2: Good Morning Sunday will help, or maybe some of those Audible books I’ve not let listened to! Terrible night’s sleep afterwards, but made it to Yogalates this morning (stretch out those old age areas of my body – knees, shoulder, back), and then into work for some useful meetings!

Categories
Cancer

[CANCER] Scanxiety and #BreastCancer

It’s not an official medical term, but “Scanxiety is cancer patients’ fear and worry associated with imaging, both before and after a test (before the results are revealed).”

In early-stage patients who are successfully treated and have no evidence of disease, the underlying fear is about cancer returning and the dreaded implications.

In metastatic patients, the fear is based in scans’ potentially revealing a lack of treatment effectiveness or disease progression.

Thus, at either stage of disease, scan results may portend death. Medscape

Because you’ve already had a ‘cancer diagnosis’ (although 9/10 mammograms are good, and only 1/8 women get breast cancer, etc), you know what it is to have been told ‘you have cancer’, and it’s entirely possible that it could have spread elsewhere… so those concerns are not easily dismissed – even if my mind has talked myself out of it, my body is clearly doing weird things, on some kind of high alert! I thought I’d got the all clear in October, and then, here we are again!

There’s some good tips on this blog post on coping with scanxiety, and I’ve definitely been doing the distraction thing (been playing around with kitchen planning, alongside Netflix!), and trying to determined when the result is likely to be “so I don’t sit by the phone all weekend wondering if I am going to get a call”.

know that the team at my hospital have their MDT meetings on a Monday (finishing about 2pm), so I was waiting to hear if the MRI scan I had last Tuesday on my spine had come back (I’m not too worried about the pathology from my surgery last Thursday, as the surgeon looks so certain it’s just a lipoma). The MRI scan had been triggered by something spotted on the CT scan for the lung a couple of weeks ago (which had come back clear). It got to 5pm, and heard nothing, so had assumed that was it, and was chatting with my friend Cathy who had come to keep me company. Then one of the lovely BCNs rang around 5.15pm to say, ‘sorry, one of those days’, but your MRI scan hasn’t come back yet, so assume after next Monday MDT, although if there’s anything we can tell you earlier, we will.

I headed off for dinner with my friend (we use Manchester Confidential 50% off deals list), determined to enjoy ‘week 3’ of this round of chemo. It got to 7.30pm, and that ‘No number given’ was ringing my phone – it was another lovely BCN, saying that my scan had come in late, still needs a proper discussion next week, but nothing cancerous (so we’re stage 3, not stage 4 cancer, and post-surgery I guess officially NED). I heard ‘it’s a  flangeloma’, we couldn’t work out quite what that is but my mum said maybe ‘phalangioma‘ – where patient’s finger gets in the way?

Anyway, I posted the following (and yes, had the chocolate fondant, bit disappointing, but rest of meal was good):


So, now, the rest of the week (after asking Erika if it was Friday – well, I’ve not been to an office since September!), kitchen planning tomorrow/Thursday, the Christie for bloods/chat with oncologist Wednesday, stitches out at the hospital Thursday (and find out what that word was), and onto weekly paclitaxel on Friday, so we’ll find out what side-effects that wants to give me, and what the following weeks look like! All treatment now is basically to catch any stray cells, and try and prevent a recurrence.

So cheers:

And to bed:

*Necklace from Charlotte Walker Silver (via my mum for Christmas) 🙂