Tips and tricks ~ Cancer Edition: Pre-Surgery

fabiennesmorgana

1 year ago

Metal pole with yellow note attached with a zip tie.

Note reads: one day you will tell your story about how you overcame what you went through and it'll be someone else's survival guide. — This is one of my primary motivations.

Recovery ~ Convalescence tips and tricks

Set yourself up for success!

Tips and Tricks

Here’s some of my blog posts where I talk about it in context, but let me go through general tips and tricks that are a combination of things I got told that were helpful and things I figured out for myself.

Tips and Tricks ~ before surgery

Cleaning

Deep clean your stove, oven, microwave, bathtub, shower, toilet, carpet, and rugs before surgery. If dust and cobwebs bother you, do a pre-surgery clean.

And consider getting a cleaner in for six-eight weeks if you can post surgery,

Alternatively, organise a Beloved to perhaps do at least the shower, bathtub, and toilet and/or mop/vacuum for you when they say “let me know if there is anything I can do”.

If you don’t have rugs, consider a rooma. Think about getting a stick vacuum at the very least. They are much lighter and easier to use.

It’s been 18 months and I still can’t clean the stove. Wiping down kitchen cupboards that are below waist level is still tricky.

Soaps and body wash

If you use soaps, consider swapping to body washes until you get better because soap produces more soap scum (nope, I didn’t know that either).

If you are undergoing any kind of treatment that will involve surgical wounds or skin problems, consider swapping to some kind of medicated wash (talk to your chemist).

A friend gave me one and it was great when I had hives and rashes during chemo.

Personal hygiene

Are you going to be able to shower yourself?

Some organisations will provide a Personal Care Attendant for a specific number of visits; investigate them, they might be able to assist with personal hygiene or with basic household tasks.

Are you going to have a period whilst convalescing? Do you need to consider period undies (which can double as incontinence wear)? If your mobility is compromised, or you are on heavy overnight medication, this might provide some peace of mind.

Get some personal wipes to have beside your bed as well. Medication can make you sweat more, or fatigue might make a shower a major task, and personal wipes are a great way to freshen up without requiring much energy.

Seriously, get a shower chair – better not to need it than to need it and not have it. I still rest on mine whilst drying or doing wound care or epilating my legs.

Everything at bench level

Move all your daily/weekly things to bench height in the kitchen, laundry, bathroom, and bedroom so that you don’t have to bend, lift, reach, or stretch.

Gardens

Get a gardener for three months if you can.

Alternatively, have a bliz before surgery and then again, get Beloveds to step in and do the lawn at least. Perhaps there is a teenager that wants to earn $50 whilst their parent catches up with you for a cuppa (and perhaps does some housework for you).

Meals

Stock up on frozen pre-prepped meals – things you can throw together and just stick in a slow cooker or the oven or the microwave. This might look like frozen meals from the supermarket or homemade meals.

Consider getting an extra bar freezer to stock up.

Ask friends to make their signature dishes and portion them down into one meal servings so that you can freeze them.

One-meal portions are particularly important if your treatment is going to impact your appetite or sense of taste or what your body can handle.

Shopping

Depending upon how long you are in the hospital, do a big shop prior.

*Disclaimer; I did not have the typical chemo experience, I was very sensitive to chemo and it interacted with some pre-existing conditions (fibromyalgia and hypermobility syndrome) and I got very sick despite excellent management. I also have some permanent deficits. I would hate for anyone to choose against having chemo based on my experience. As always, consult with your wellness team, because it is a very individual response.

Seriously consider getting delivery – it’s much less of an energetic demand to bring some bags in from the porch and put them away than it is to go to the supermarket and then load and unload the car.

This concept of usable hours is super important to recovery and convalescence.

Car

Clean and refuel the car before surgery – it’s going to be the last thing you want to think about for a while.

Consider how impaired you are going to be.

Are you able to drive at all after surgery? If not, can you pre-arrange Beloveds to assist? Also download Uber or similar as a precaution. Again, if Beloveds ask how they can help, tell them you need someone to drive and give them details.

Do you need a disability parking sticker whilst you recover? These are issued by your local council. You may be able to drive, but perhaps you need the extra space to get in and out of the car – and generally, the disabled parks mean that you aren’t walking long distances or dealing with inclines or declines.

Cafes and restaurants

During recovery or convalescence, getting out of the house when you are able and socialising is important.

Do some reconnaissance before surgery: what places have disabled parking? How easy is the access in terms of stairs? Is there a disabled toilet? What are the chairs like? How much egress is there between tables?

Aids

Get the bed pole, over the toilet chair, and the shower chair… much better to have them and not need them than need them and not have them. I’m still using all of mine, 18 months later. Don’t be afraid to use aids, but make sure you are using them properly. Not using them, or using them incorrectly, can make things worse.

If you are going to have any kind of impediment or limitation to your arm /shoulder/ back movement or your abdomen, consider the demands of cleaning and the advantages of getting assistance so that you don’t impede your healing.

Seriously consider a recliner chair. I ended up sleeping in mine for about eight weeks and over a year later, I’m a complete convert. My life would have been so much more difficult without the recliner.

Make sure you have bench space for books, medication, water, lotions and potions, cups of tea/coffee, mobile phones, and tablets beside your bed and your chair.

Refusing to pretend, even to myself, really helped. Accepting that I was going to be functionally disabled for the period of my recovery post surgery helped set me up given that I then was so sick during chemo and had such a long recovery period.

Make a sign

Seriously.

Make a sign for your front door. You are going to be sleeping at all kinds of hours and you are potentially going to be moving more slowly.

You do not want or need random door knockers or bell ringers who disturb your rest and may then in fact double the insult by leaving before you can get to the door to answer the damn thing.

Here’s what mine looked like.

It’s not fancy – I literally thought about this two days before when I was trying to get some sleep and was disturbed by a knock at the door.

Tips and Tricks ~ both pre & post surgery

Accept all the help

If a Beloved wants to gift a Menulog/Uber/Doordash voucher, let them.

Someone offers a meal or to come and clean? Let them. Work on how to accept assistance gracefully in a way that acknowledges the person offering it instead of focusing on your guilt and discomfort.

“Let me know if I can help”

Keep a list of these folks and then, as needed, ask.

“Hey, if you are passing this week, could you pop in and change my sheets for me?”

“When you come over to visit on Tuesday, could you bring 2 litres of full cream milk and some fresh white bread?” (Having said this, consider some long-life milk and having sliced bread in the freezer).

“Would you be able to take me to an appointment on Monday?”

Communication, transparency, and asking for help

My reading indicated that isolation was not a positive way to deal with a significant crisis, despite my introverted inclinations towards extreme privacy. So I decided that whatever happened, I would honour the concepts of transparency and communication and I would ask for help.

That last point was something that my inner circle of people I told in the week between the further testing and the follow-up appointment all emphasised in various ways. The people I told know me well, and for them all to say that one thing independently of each other – well, I can be stubborn, but I’m not completely obtuse!

Social media tips and tricks

Social media: deciding strategies

Breaking bad news is challenging, and having to repeat it is exhausting.

There are lots of complaints about the evils of social media, but equally, there is much to suggest that it is more about how an individual interacts with social media that is the deciding factor.

I use social media to connect to my community. My community is not a traditional proximity-based one, it is a global, diverse, sprawling network that honestly has many people who would probably struggle to get along if I put them in the same room.

If you live alone, obviously it’s not smart to post that your house is going to be unattended because you have surgery on a certain date.

However, consider locking your Facebook down to friends only, and let people know generally what you need. You can cover specifics in messages. You might be pleasantly surprised by interstate and overseas friends organising vouchers or offering to pay for cleaners or gardeners.

Again, ask for help. People who love you want to help. Think of yourself as someone you love: what would you happily do for a Beloved? I bet it’s more than what you would be comfortable asking for.

Boundaries

Also, don’t be reluctant to communicate your boundaries.

They are super important, and spending time reinforcing them during recovery is tedious and draining. It’s much easier to be upfront so that people have a framework to work with.

Again, here are some links to blog posts where I go into my approach regarding this in more depth.

Appointments

See your dentist, get new glasses, go to the GP and restock on your prescriptions, and get your hair/nails done (if that is a thing you do). Consider that your nails will need to be unpainted if you are having surgery, and at the least, cut your toenails because abdominal surgery will make that hard for quite some time.

It’s going to make you feel better on your bad days and it’s less to deal with during your recovery.

Physio

From my experience, ongoing physio after surgery is so important in terms of regaining full capacity.

I wish I had established a relationship with my physio before surgery so that they had a better baseline on my physicality before surgery and chemo.

It’s something we have discussed, and they admit they wish they had a better baseline for me as well.

It’s about the only thing I would have done differently, to be honest. I would have seen them prior and established a relationship and a baseline.

Mental Health

Get a counsellor, a psychologist, a psychiatrist – whichever best suits your needs. Again, ideal if you establish a relationship before surgery / treatment.

Professional support is important. Your Beloveds cannot provide you with that level of clinical expertise.

Wellness team

Wellness Team is an inclusive phrase I use to cover all the medical professionals and specialists I have been dealing with, with my GP as my foundation, including every single technician, nurse, physio, receptionist, PA, etc. It’s an inclusive, collaborative term and those are the qualities that align with my values. Other people might have different phrases – language and relationships are so important.

Overall, I feel that having an established relationship with my GP and my psych made my life so much easier.

As I said, I wish I had already established a relationship with my physio prior.

I was really lucky with all the various members of my wellness team overall – both at the hospitals and with those specialists I worked with privately.

However, and I cannot emphasise this enough, if they are not a good fit, replace them. Sack them if they don’t support your recovery or if they aren’t a good fit. There was one specialist that I saw twice and I won’t see them again because our world views did not align.

I’ll put in a disclaimer here and say that sometimes your worldview might have to change, I.e. if you are working with a dietician, don’t get hung up on the fact that the science has changed – like the view on eggs or whatever. Medicine is a science, and science develops – the views held in your early years may well have been radically revised by your 40s.

Don’t be afraid to seek a second or even a third opinion. Make sure these opinions are from medical professionals established in the field, not from your neighbour who heard it from their cousin.

Medication

Get your GP to reissue any scripts you need and get enough filled for your recovery period + two weeks.

Is there extra over-the-counter medication you might need?

Or extra prescription medication.

I used an app I downloaded for free to track my medications and when I could have them. It was too easy to lose track, especially in the first week or two out of hospital. I used My Therapy, but there are lots of options.

For example, in addition to all the regular medication that came with chemo, I needed additional medication to manage reflux, indigestion, nausea, hives, dry eyes, dry skin, lots of skin tears and bruises, diarrhoea, constipation, pain relief.

I also needed wound care, adhesive remover, additional tissues due to the daily blood noses, additional skincare because my skin was so dry and so fragile, tea tree to prevent fungal infections when my nails started lifting from the nail beds, loads of hand wash and sanitiser, more laundry powder and tub cleaner and antibacterial wash because of the extra infection risk combined with surgical wounds.. it ended up being *a lot*.

*Here’s another disclaimer.

Every chemo patient is different. Chemotherapy itself is so incredibly tailored now to the type of cancer and the individual. I got very, very sick, and I do have permanent deficits, but I would hate for anyone to base their decisions around having chemo or not on my experience. Talk to your wellness professionals. I talk about it not to disparage treatment, but to give other people the tools, and strategies they might be able to use from my lived experience.

Companion Advocate

I have mentioned this before, but it’s worth revisiting.

Advocate

I’m going to take a moment to say how important it is to have someone else attend your appointments. They may not be able to attend in person, but you can call someone once you are in the consultation. I have never had a medical professional take issue with that, and honestly, if they did, I would be considering changing medical professionals. Having my younger sibling as my “phone a friend” meant that I could debrief with them later. I could check my understanding against theirs and we could discuss any gaps or discrepancies, as well as plan for the next step.

Your advocate companion ideally is someone who can make the commitment to be involved in all the appointments so that you have consistency.

Added bonus if they have a medical background.

They have to be someone who can regulate their own emotions and who will observe the ‘support in, dump out’ of the ring theory.

They also have to be someone who can understand what your preferences are, even if they are different from their own preferences.

My younger sibling has been the best advocate companion I could ask for, and I am beyond grateful for that.

People have said to me: “oh but I took someone, and they couldn’t cope, and I had to comfort them and then I didn’t ask anyone else”.

Two comments on that, because I have heard it more than once.

Firstly, I’m sorry you had that experience. That is not a situation that anyone should have put a friend who was receiving a diagnosis into. You deserve better.

Secondly, and this may be a difficult conversation to have with Beloveds, you have to be discerning. That was the wrong Beloved to pick. They were not up to the task. And not everyone will be.

This is such an important conversation to have, I’m going to devote a whole blog post to it, so if this is something you want to dive deeper into, let me know your thoughts, and keep an eye out for a blog post called Friendship or similar in the future.

Primary supports/First Response team

I don’t know how I could have done any of this without the primary supports of my younger sibling and my housemate.

And this is important. Consider the companions you choose to accompany you through your experience. I’m incredibly lucky to have such strong primary support and then a great network in addition to those two. Be discerning. These experiences are not the time to be spending energy you don’t have or emotional labour on ambivalent relationships.

Again, this is so important, and such a big topic, I’m going to devote a whole blog post to it – hopefully soon.

Strategies

It was important to me, right from the start, to make conscious decisions around my strategies. To make decisions around who my immediate response team were and ask for their support and commitment. I needed to work out my boundaries and how I wanted to communicate them, so I consulted with my GP and my psych.

I also did a heap of reading of peer-reviewed scientific journal articles about my procedure, around the psychology of cancer and surgery and treatment. Additionally, I read up on social media strategy, again with peer-reviewed articles. Psychology articles have a lot of insight into the resilience and the benefits of gratitude practice, meditation, and religious practice.

This approach may not suit everyone, but it helped me make decisions based on data, studies, and the rigour of peer review. That in turn, helped me define my strategies.

Basic principles

In hindsight, my first response team is a great example of my values, needs, and priorities when I am in crisis and need support. I place great importance upon personal lived experience, professional expertise, and practical assistance. This has been a consistent theme throughout my cancer experience.

Psychology

Preparing for diagnosis

I started to consider the psychological aspect behind communicating a diagnosis. How information is framed is incredibly important – and the same is true for your mindset when receiving a diagnosis. I wanted to be open-minded. It was also important to ensure that whatever the information was, I was able to absorb it.

In terms of background, I have a psychology degree. Funeral celebrancy has taught me a great deal about grief and death. Being part of the Peer Support team at my place of work has kept my psychology skills well-honed. In addition to working in the health emergency sector for 13 years, I am also a trainer and an instructional designer. It was reassuring to me to consider the practical and professional skills I had at my disposal.

On a personal level, I have also done my best to support friends through various health crises, including cancer. I have stood beside friends as they navigated the inevitability of their deaths due to disease. I have attended to friends as they piloted their transitions from healthy to disability and maintaining independence, sometimes functioning in an unofficial ‘carer’ role.

On a purely pragmatic level, I had a very good toolkit to work with.

I started to think about the role models and frameworks I had, to ensure that I was conscious of what biases I may be holding.

Unconscious biases – or ‘the stories we tell ourselves’

For example, my stories around cancer typically involve medical complications, mental struggles around fear and ignorance, emotional isolation, that it is a topic that isn’t discussed, reoccurrences, and death.

This is because, in my line of work, I see acute emergencies, end-of-life crises, and death. In my personal life, more people close to me have died of cancer than those who have lived.

This forms an unconscious bias in terms of my experience of cancer, and one that I needed to unpack to deal well with the prospect of my diagnosis. My GP and psych were great with helping me challenge this bias, and it helped them to know that I held it.

Paperwork

Surgery can always go wrong.

Do you have your medical power of attorney sorted out? Advance Care Directive?

Do you have your next of kin notified of what is happening?

Have you opted in as an organ donor?

Do you have a will?

This all sounds so grim because it isn’t common practice. It absolutely is best practice however. I’ve been involved in post death planning both professionally as a funeral celebrant and personally where so much pain and hardship could have been avoided if the person who died had good travelling documents.

I refer to this stuff as travelling documents to try to break some of the taboo around it all. It is basically what you would also put together if you had the time in a situation where you were evacuating your house, or if you were going overseas for an extended period. It’s important.

Father’s Day Weekend: My Parents Got Their Shit Together Before My Dad Died. It Means Everything.

Great article.

🌹 Be kind, Gentle Creatures, tend your gardens, take time to eat the roses, and walk your boundaries.

❗ Check your breasts, check your testicles.

Self checks

Ensure that you are vigilant around your self-examination. Train yourself to check your breasts/testicles routinely, and monitor your bowel habits and your urine output. These are our body’s early warning signs, and we don’t have a lot of awareness of them.