This afternoon I signed yet another consent form, though I was pleased that ‘death’ wasn’t listed as one of the side effects this time… just possible allergic reaction, etc. etc. – oh and likely slow healing of the wound due to chemotherapy.
Surgery During Chemotherapy?
Cancer teams are not keen on any form of surgery during chemotherapy, and I’m nearly 2 weeks past my last chemotherapy treatment (which means that next week I’m officially halfway through the chemotherapy phase of the treatment), because of the infection risk. During my first chemotherapy, whilst undertaking scar massage, I felt another lump on top of the mastectomy site. I left a message with the BCNs (Breast Care Nurses), and they had me in the next day. Another physical exam in which they swiftly said that it was likely one of three things, none of which were cancer, followed by an ultrasound which confirmed that it was most likely a ‘lipoma‘ (fatty lump). Told to come back after the next chemo round if still there to have it double-checked, at which point they decided to take it out and biopsied to be sure, but we had to find the right timing around chemotherapy (on the first cancer drug the first two weeks are where I’m most at risk of infection, including neutropenic sepsis, so cutting the skin introduces a higher infection risk). As my next chemo is 2nd February, and my surgeon does all his surgery on a Thursday, my oncologist Dr C agreed that it could be done today, subject to white blood cell counts yesterday.
Hospital, Hospital, Hospital
This week I’ve been in the hospital every day – Monday was a refit for the prosthesis (I’ll blog on the joys of finding a fake boob that fits at some point – as we joked, it’s like the Wand Shop in Harry Potter – the boob chooses you!), Tuesday was an MRI scan to check something that showed up on my spine – in the CT scan I’d had the week before to check something on my lungs – the lungs are thankfully clear, the MRI we’re still waiting on results. #Scanxiety is a real thing I can tell you… and I suspect this is not the end of all these scares… Yesterday I had to go in to have bloods taken (via my portacath, which only some people know how to use), and then today I was back in the waiting room – Ward D5 this time, waiting to have the lump removed for an ‘excision biopsy’, accompanied by some stress after a phone call last night indicated the MRI test results might be back … they are not!
Waiting … and Waiting
And waiting room is the right word… Thankfully accompanied by my good friend Andrew (was told not to drive home from this operation too, so also provider of lifts as well as company). We arrived just before 12, handed in the registration form, then sit and listen out for ‘Rebecca Lewis’ (oh yes, one can only train the regulars to call me Bex, and my surgeon has never learnt that. I’ll forgive him, as he’s lovely, whilst also being pretty clear about what’s going on, and done excellent work on me!). After about an hour, get called into see the nurse, blood pressure, temperature, more paperwork (name, dob, address parroted out once more, and the addition of various wristbands (like going to a festival, but less fun!):
The anaesthetist also popped in to explain the sounds and sights I’d see, as this surgery is quick, done under local anaesthetic, so I’ll get to see the theatre I had my main operation in (which clearly I slept through!), so that I wouldn’t be freaked out, and then they said take another seat for another 30-45 minutes when ‘Mr D‘ (my surgeon) would come up with the consenting paperwork. All this time I’m wondering if I’m getting my scan results! Mr D arrives, impresses Andrew with the fact that he knows who I am, shakes my hand, asks how I am, does the same to the woman next to me (who I then get talking to, of course!), then goes to get my paperwork. Tells me straight away that there was some confusion leading to the phone call, no scan results are back, but hopefully they’ll be back on Monday in time for the MDT meeting, so next week! He then makes sure I know what’s going to happen, identifies the potential risks, I sign (including my date of birth instead of today’s date, but you know…), take a seat again…
Then taken to a room by one of the nurses, who then comes in with a basket for my clothes, get to put the LOVELY gown on, lock valuables away, etc. and I’ve not long to wait – although time for a conversation with the three other ladies in that waiting room – all waiting for leg surgery! Then it’s time for ‘determined face’ on, accompany a nurse down the lift into the waiting area for the operating theatres (same bed as last time – apparently relates to the theatre) – and note how much hair the cold cap is causing me to keep (though I can’t wash it often, or style it at all aside from one brushing a day so..)
After double checking all the information on most of the forms, and name/dob/address again, head into the theatre. I’m quite excited to see what this looks like to be honest, as Holby City/Casualty is my only reference point otherwise! Those big theatre lights are up, there’s lots of people in there, the tray is being loaded up, and I’m asked to get up onto the bed (which has a weird jelly sensation). It’s pretty cold, so soon covered in a blanket, lots of lovely people checking I’m OK, staff double-checking bits of paperwork, etc. Sam (medical student) pops up with an arm extension to the table, and there is a layer of jelly for my arm to rest on + various absorbent papers for whatever gunk is about to go on me.
Then we’re ready to go, Mr D explains what he’s doing as he iodines the area, places the blue sheet over the area (they nearly forgot to take it back off my face – nice to have a laugh mid surgery, right), local anaesthetic goes in, checks I can’t feel anything.I reckon what follows was about 10-15 mins of various tugging sensations, fizzing of cauterised skin, etc plus bits of conversation over and to me, before Mr D asks, “I don’t suppose you want to see it”. I’m curious so, yes please, and something that looks rather like a very large baked bean is held up (I reckon just over 1cm circumference, less than 2cm long)… and then I’m being stitched up. Then it’s back off the table, check I’m not dizzy, but taken up in a wheelchair anyway. Get to chat to the woman who was next to me in the waiting room as she’s in next.
Then head back up to the ward, where BP/temperature checked, check that the dressing is good, loaded up with water, and given painkillers for later, plus spare dressings for the week, plus an appointment to come back in a week to check healing, etc. Get chatting again to the women in this room, where they’re still waiting, before being told can get changed and head home:
So now it’s all about waiting for the MRI, and getting ready for Paclitaxel next week (new drug, new side effects). I’ve not taken any painkillers yet, though I will as I head to bed, just enjoyed the support from people via social media, etc. and chatted to a friend on FaceTime. Once I got past the dizzy/nausea stage of the first week of chemo, mostly been left with tinnitus and indigestion – along with fatigue. I tell you, this cancer, it’s right glamorous! A friend sent a message this morning about surviving endurance training … and that is pretty much it – it’s lots of little things, appointments, scares, side effects, which add up to a whole heap of stuff but on their own they sound stupid! I’ve gone back to work (aka study leave at home working on research, I’ve got plenty that I want to do) after each chemo, but not this one, when I’ve enjoyed planning out what needs to be done to my house (it’s a good distraction!), especially a new kitchen (yeah, I’m not very good at the software, I’ll let the experts take the measurements/starting ideas and create proper plans)!
Other Cancer Thoughts/Useful Info
I like this post from Maggies about ‘how to talk about cancer‘, and here’s some things from Lush that might be useful to give friends who are undergoing chemo (for hair, face, spots, dry skin, etc.) … with a longer list via @tickingoffbreastcancer: HOW TO HELP SOMEONE GOING THROUGH BREAST CANCER TREATMENT – you might recognise some that I’ve had, as we have chatted via YBCN (please direct any woman under 45 who’s been diagnosed to the associated excellent Facebook group, whilst I also find the people in here lovely too).
Oh, and you know I feared ‘chemo brain‘, here’s what it is:
- Difficulty remembering facts (e.g., people’s names, important dates)
- Trouble finding the right words or finishing sentences
- Struggling to concentrate or learn new skills
- Getting confused easily
- Finding it hard to multitask
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.