I’m still recovering from my operation, but it was time for another appointment with the oncologist this morning. I’m kind of hoping this is what my cancer blogs will look like from now on, maybe reporting that energy has improved a lot, but otherwise no great changes – let’s see! Every scan/meeting with oncologist comes with potential for change in treatment, news of progression, etc … and that pushes your head all over the place, though keep trying to hold onto:
It felt like an ‘early start’ this morning, 10am at the hospital (I’ve been letting my body sleep as it wants, though trying to move back towards into the mornings). Last time I barely had time to sit down before I was in/out, but today it was a 50 minute wait (by which time a friend had turned up for her appointment – I ended up coming back and sitting with her post my appointment til she went in about 2 hours late)… so plenty of time for #WaitingRoomFeet
After that 50 minutes I was taken into one of the rooms, and left waiting for around another 10 minutes (thank goodness for smartphones):
When the door went, it was another oncologist, not my regular one. Bit of a surprise, but he was really nice and we had a good chat about the medication I’m on, including the extras (been told to drop the Vitamin B12, apparently not a good combo with the active treatment I’m on), talked about New Zealand (and a letter for the airline), and agreed that I’ll be back for another checkin as soon as I’m back from NZ, by which time I’ll be around due another scan – and hope that’s keeping things stable!
The biggest thing with ‘living with cancer’ is the ‘headmash’ of feeling like the carpet has been whipped from under you. Everything feels uncertain – I had no symptoms for the tumours in the spine – and a lot of the decisions are triggered by us reporting any unusual symptoms (standard rule is if it hangs around for about 2 weeks and causes worries, then follow up) … but the scans are there to pick anything else up. If I KNEW I had 6 months left, then decisions may be different, but also have to live with the potential of much longer if treatments hold/keep improving – this news about the early stages of an immune therapy that ‘may cure all cancer‘ is encouraging – but several years down the line!
My head goes round and round, and a current dip is mood is not particularly surprising (lots going on, lots of things to think about, lots of things that my head worries about – whether I plan to or not –
I have realised that I can be quite contrary in my responses to people (and I do recognise that – all my friends anyway – are coming from a good place). If you tell me it’s terrible that I have cancer (or do the pastoral tilt), I’ll probably try and convince you it’s not that bad, but if you try and convince me to be positive (which is what my brain is always trying to convince me) or that everyone else has it just as bad, I’ll think of all the crap going on … so I loved seeing this video today:
Essentially I am grieving for the life that I had before…. and I am used to burying negative thoughts (I’ve lived with depression for many years) in being super busy … but I keep running into ENERGY STOPS… and right now I’m wondering how I’m going to start up again…!!
It’s quite difficult for people to understand …. people can expect you just to be grateful to be alive, but ‘quality of life’ is important too – and it’s just not as easy to manage at present. Fatigue is the biggest problem – and I just don’t really know how to manage this yet – really hope it improves (cancer patients do have a tendency to try and fit everything in (and of course I’ve always been like that) because we have come face to face with our mortality) … the counsellor this week suggested that I try Macmillan Restore (but, you know, I need the energy to digest this). The only black spot in the conversation with the oncologist today was him saying ‘you should try having some exercise every day, that helps’ because 1) he didn’t ask if I do exercise (I do, every day, mostly Pokewalks at present) 2) I have friends with ME/chronic fatigue for whom this advice impacts them negatively. Since diagnosis (now around 2.5 years ago), I have ensured that I’ve got out of the house every day barring – I think – 3!
I take a lot of medication – thankfully the Zoladex has stopped now I have no ovaries, but prescription wise I’m on 3-weekly Herceptin/Perjeta by infusion, 6-weekly denosomab by injection, daily exemestane and citalopram tablets, twice daily calcium/vitamin D. I’m expected to wear a sleeve/glove, and moisturise twice daily, for lymphedema/operation scars. I’m working with the GP on managing my sleep with either Zopiclone or Phenergan (various doses) without knocking me out for the following day. I’m on a fairly permanent dose of doxycycline to try and keep my skin reactions under control (and my bloody nose), along with frequent applications of Pliazon skin cream. Appetite does weird things, nausea pops up frequently, stomach frequently works overfast, body creaks (especially knees/shoulders – can be hard reaching the door before people walk away if I’m upstairs, esp first thing), minor tingles in hands/feet (peripheral neuropathy), stress/overwhelm feel quite common, along with poor memory/concentration. Alongside my prescribed meds, I take Evening Primrose Oil (menopause side effects), Fish Oil (joints), glucosemine (joints), probiotics (immune/digestion)… and just stopping Vit B (skin/energy). Skin dries out, so try and remember to moisturise (I have plenty, I just forget), and my nails are beyond help I think (they look like I’ve bitten them to the quick). Always keeping an ear out for things that might help – e.g. there’s a late stage trial on aspirin. The thing you’ll hear often is ‘well, I guess it will do no harm’, but my worry is that we’re potentially wasting money/energy, etc. on things that don’t help …
Also needing to be wary that Immune system is a bit shot – so more likely to pick up illnesses, and take longer to recover… Trying to manage this, and ensure keep that exercise aka ‘movement’ going, as research has shown this makes a huge difference to recurrence/progression….
So, I am looking forward to seeing people – it’s very easy to feel/become lonely with cancer and end up inside your own head – although obviously am in many fab online communities giving practical and psychological support! I’m used to being quite the organiser, so it’s great when others offer (without pressure, and with flexibility re energy, etc.) companionship. I always joke about not wanting people to drop by – but a message 10 minutes before to see if I’m awake/dressed/have energy is all it takes…. also being aware that I may be working (just because I’m at home, doesn’t mean I can drop everything)… but also nice to have things to plan for and look forward to! So, please do invite me!
I won’t always cope with day long things, or something every day, so more frequent shorter visits are great! Suggestions that first come to mind include:
- Invite me for lunch (or we can cook at mine)/dinner (not necessarily super late), or in town – look out for nice places to eat in town (Manchester Confidentials often has deals)
- Walk together (pokemon or outside) – I’m not up to keeping up with Ramblers Hikes [at present?] (though I would like to find some of the shorter ones)
- Go to the cinema together, or chill out with Netflix (I’m NOT suggesting Netflix & Chill!)
- Swimming (esp open water) together
- Visit an ‘attraction’ together – check out my (not up to date) Pinterest boards: NW/elsewhere
- Come and help me with my garden (I’m rubbish at it)
- Find a good hot chocolate (I’m less excited by cake than many people expect, but cheese, or platters – they win!)
- Help me organise a summer party (and/or other multi-people event)
A reminder that I’ve decluttered a lot, so I don’t need more ‘stuff’ …
At work, we can, on an academic year by year basis, ask to work less hours – so I’m definitely down to 80% for next year (no Friday work), and need to talk to managers/occupational health what that looks like in practice … really concerned about what it might look like (honestly, I can’t control my brain, and better to get those thoughts out there) – although as people keep saying, they’ve been good so far so hopefully that will continue! Also will look for ways to be proactive in hopefully getting back onto media/speaking circuit more… 🙂 Meantime, for now, probably the first time in the experience of loads of people that know me – I have totally put work to one side til I’m due back 10th Feb – no emails, no Slack, no ‘just do this little thing’…
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.