HOW AM I GOING TO DO THIS?
Parenting is one of the world’s most sort after and privileged roles. With no training manual, the role of parent comes with great responsibility and reward- and no sick leave. When you need a rest or a day off, your title of mum or dad continues. You are your child’s first love, their source of security, their ‘everything’….. no pressure!
Parents often feel an immense societal pressure to be all things to all people, all of the time. Whether real, imagined, or self imposed- it is a toxic culture. Parents please join together and give yourselves a well deserved break from the perfectionism that modern parenting seems to require.
What happens when you physically cannot parent?
My surgeon told me before I left hospital that “the real work starts when you get home”. I had been home from hospital for a day, when I realised that I might have a problem with the whole parenting/recovery thing. A week earlier I had a bowel resection to remove an early bowel cancer.
The post-op recovery reality. I think I’d been home for about 36 hours when my (then) 18 month old son tripped and had fallen down 4 stairs. My instant reaction was to bend over and pick him up – and I couldn’t. I could not bend down . When I bent over and tried to reach his arm, I felt like the surgical wounds across my stomach were about to rip open. Thankfully my mum had travelled up to stay with us for the week and she was able to run down and pick him up. I remember thinking “there is no hand book for this”, no one spoke to me before or after my surgery to tell me how I could make parenting life easier during my recovery.
I had quite a few ‘how am I going to do this moments’ during my first months of recovery.
Day-care drop off and nausea. In the early days I had developed Blood Hound-like olfactory powers combined with hardcore nausea. Now, there was absolutely nothing wrong or unhygienic about our boys day-care. But let me tell you day-care drop offs were never going to be the same. If you have a child in day-care, you will know there is a certain clinical/nappy/child sweat smell that hits you when you first walk through the doors. Let me help with a visual: imagine smelling a scented chemical bin liner with nappy waste, whilst managing your worst hangover ever… yup!
I learnt over time to manage my nausea. Unfortunately I couldn’t use the traditional anti-nausea medications because of some of the side effects. The strategies that helped me most were eating regular small meals which were high in protein to help balance blood sugars, smelling quality peppermint oil became my saviour, buckets of fresh ginger and lemon tea (large chunks of cut ginger with freshly squeezed lemon) and ditching coffee all helped me to get on top of the nausea. Eventually as my bowel recovered, the nausea went away.
Park trips. Something that I had taken for granted as a well and able bodied parent. I had worked out early in parenting that a morning trip out with our two little guys set us up for a much happier, calmer (mummy), relaxed (also mummy) day. So when I received my post-op clearance to drive I was keen to get back in to some early day outings. If you have taken an 18month old and 3 year old boy to the park you will know that they love RUNNING in different directions, getting stuck in strange places and sprinting towards the closest motorway.
A month after my surgery- there was still no running, no scrambling up rope climbing frames to extract trapped toddlers, no heavy lifting (in what reality is this possible for a parent?), and often times I still required emergency toilet stops. As I write this I am having a flashback to our youngest getting stuck on a climbing frame- with a leaking poo explosion nappy. Probably one of the most FML parenting moments (actually that’s not true – there are loads more.. baaaa haaaa). Thankfully a lovely kind mum came to help me and we eventually got him down. I digress.
Parenting from the bedside or the lounge– this, I became an expert in. For me my greatest physical recovery challenges were nausea, extreme fatigue and relentless diarrhoea. I had this very strange and debilitating nausea/stomach cramp/faint thing going on- let’s call it the ‘shit triangle’. I’d get a stomach cramp (think ‘gastro cramp’), feel nauseous a second later and then feel like I wanted to faint. That ‘shit triangle’ was a part of my daily life for about 6 months, probably related to some nerve changes that I had post-op and was something that I just had to manage (eventually I did find a solution). If someone had told me a a few months prior that I would and COULD manage these symptoms while parenting, I would have said “not on your Nelly” and “show me the exit please”! But I did, and I want everyone who is reading this with symptoms that are not managed to know that there is help out there for you. You just need to tap in to it.
So, the boys and I had a lot of games in bed, hide and seek in the bed (totally a thing), YouTube clips (there is soooo much great stuff out there), search music videos, children’s counting, home exercise shows; LEGO, books and the ‘go and find X in the garden’ game. Just to mention a few. It was exhausting, stressful and full of mumma guilt. Many tears were shed by all of us. There was lots of trial and error. Try to remember that young children will more than likely not remember you being unwell. What is most important is that you do what you can to maximise rest and find snippets of joy throughout your day. If rest means extra childcare hours and you can afford it- do that. If rest means having a trusted friend or loved one look after your child for a few hours or even overnight if you need it- do that too. All our children want is to see us happy, because when we are happy -they are happy.
Finding a silver lining
3 months into my recovery I had realised that I was also being given a gift- a gift to spend more time with my little men. Before cancer, I had been working four days a week since my youngest son was one. I now had more time with the boys. We had reduced their day-care hours to reduce our weekly household outgoings. In reality I really did need more time to rest and recover alone but it just wasn’t possible for us. Although it was a tough season, now I am grateful that we had more time together and we grew closer together. I found that by focusing on the benefits of hearing new first words, seeing the boys discover new animals in the garden, and learning new skills with drawing and puzzles- that my parenting from the bed and the lounge became easier. I usually describe these ‘ah ha’ moments as surrender. The simple things suddenly become the beautiful things.
So, two years on- mums and dads, I have some hot tips for you
I am putting this at the top of the list because it is easy to add to your daily routine and it’s free. Every morning put on some music that YOU love. It doesn’t matter what it is, as long as it makes you feel good. Music will instantly lift your mood, the mood of everyone else around you, and the energy of the house. There has been some great research in to the positive effects of music on health. The Lancet published a study in 2015 on the benefits of music to help patients to reduce pain and anxiety post-operatively.
So download the free Spotify app, check if your mobile provider has a music subscription (it may even be free with your package), or live stream a radio station that you love. Some music platforms even have ‘Cancer’ playlists… have a listen.
Accept and ask for help
If you have read any of my other blogs, you will know that I am passionate about this. There is no ‘I did it the hardest, by myself award’. But accepting help in any form can be terrifying.
You may already feel like a burden, you may be overwhelmed with your diagnosis, treatment regime, and appointments. You may not want to accept help because it is an admission that your illness is impacting your abilities, independence and maybe even your longevity. Allowing people to come into our life also makes us hugely vulnerable. The fear of judgement, the fear of people seeing you physically and emotionally at your worst, without make-up (yep to some people this is really important and that’s absolutely fine), and taking off our ‘I’ve got this’ mask- can be too much to handle.
Whilst in the depths of treatment or recovery, many people report that they just want to turn inwards and be alone. There is a lot of emotional processing that comes with illness, pain and other symptoms, and the ‘what if’s’. Some people may want and need the help, they just aren’t in the right headspace to ask or receive.
The reality is that most of us do need the help, or our family needs the help. If you feel overwhelmed and you’re not sure what you need, perhaps try writing a list of tasks/chores that you could delegate to others. Create an ‘I absolutely cannot do this’ list. Think about meals, school drop offs and pick ups, washing/folding, shopping, mowing the lawn, play dates (SAY YES TO PLAYDATES). In my experience people absolutely love helping, but often don’t know what you need. They worry that they will cook something that you can’t eat or the kids won’t eat. A list will ensure that you have something prepared when you’re asked.
If your children are school aged, consider asking the school about extra activities or support for the children. You will be surprised about all of the amazing resources and programs that are out there. If you are part of a group or a church, you are likely to have a ready and waiting village- please accept help!
Setting your home-up after Surgery
Have a look around your home and do a walk through of your most commonly performed tasks. What do you find a challenge? Organise for regularly used heavy items to be moved down to bench height. Simple things like moving the nappy change mat to the bed, or sitting down at the dining table to chop up vegetables/ fold the washing can make home life easier. If you are on a lifting restriction remember to think about how you will hang out washing- perhaps use a clothes horse and hang out a couple of items at a time.
Parks and Play
When I was the most physically drained – what I needed was a fenced park, carpark <50mtrs flat access walk, toilets right next to the play area, and bonus points for a cafe/kiosk close by. I drove the streets and found a couple of gated parks with toilets near by. I recommend hopping onto mothers group pages, community pages and asking for what you need in a playground. You can also search on-line for ‘disability access parks’ and ‘fenced parks’ in your council area.
Conserving your energy
Energy conservation is your friend. Pacing, prioritising (what must I do today) and always ‘leaving some in the tank’ is essential. Often recovery is one step forward and three steps back- and that is OK. Whether you are in a recovery or maintenance phase of an illness, working at 75% of your full capacity is a great concept to keep at the front of your mind. So what that means in reality is not cramming all of your appointments into one day, having an easy day on your hospital appointment days, having days where you don’t have visitors or appointments, having days where you don’t cook, and sticking to a light exercise program (ideally provided by your Exercise Physiologist).
Health professionals see all to often the impact of patients and clients ‘doing to much’. Often the result is a step backwards- the last thing that you were hoping for. However, if that does happen take a break, reset, and tomorrow is a new day. If you are in Australia and eager to get the best out of your recovery remember to talk to your GP about a Chronic Disease Management Plan. This plan will allow you to access a number of free or heavily discounted allied health sessions to access e.g. Exercise Physiology, Physiotherapy, a Dietician, etc.
Often our partners feel just as afraid about our illness or future as us. I wrote about my husband’s carers strain in an earlier blog. I hear many partner’s saying “I wish it was me”. That is because we feel more in control when we have the illness and because we find it heart wrenching to watch someone that we love experience pain and discomfort. The impact of strain that an illness can have on a partnership can be long lasting. This can be related to on-going symptoms, chronic side-effects of treatment, changes to social circles, ongoing financial strain, a feeling of disconnectedness, and uncertainty about the future. My best advice is to see a specialist cancer counsellor or psychologist early into your diagnosis. It is great to have expert support and advice from a professional who understands what you are both experiencing. This article by the National Cancer Institute has some great information.
Illness is expensive- it’s the reduction or loss of income, specialist visits that usually have some form of out of pocket fees, allied health specialists, holistic health specialists, tests or imaging that isn’t bulked billed (even in Australia we have variation across the States), medications, supplements if you choose to use them, and home help if you need it. The good news is that there is support out there. If you are in Australia start by having a look at the Cancer Council website or contact the Cancer Council in your State.
Many people have illness/disability cover built in to their Superannuation, and some people also have cover within their partner’s Superannuation – call your Super provider to discuss. Other supports include access to discounts and possibly a rebate through your energy provider, and putting your mortgage on hold for a period of time. In Australia if you have a child in day-care you may also have access to subsidised day-care through Centrelink. Contact Centrelink and enquire about childcare support for Financial hardship.
I also found it easier to break down regular utilities in to monthly direct debits- rates, electricity, water, and all insurances. When you do find that you have some extra energy it is worth doing a ring around to get a better deal on your insurances. If you have any professional registrations, ask the organisation if you can put your payments on hold if you are not working.
If your children go to private schools or have after school activities that you are struggling to pay- reach out to the manager and discuss payment options.
Talking to children about your illness
Fortunately this was not something that we had to navigate, as our children were very young when I had my diagnosis. The Cancer Council has an excellent resource on this and I highly suggest having a read through and sharing with grandparents, aunties and uncles. Age appropriate information is really important, as is having all of your family ‘on the same page’ regarding key messages and what is shared with children.
Balancing recovery and parenting
If I was coaching one of my best friend’s through cancer I would say managing your energy is a non-negotiable, outsource whatever you can, and find a snippet of joy in every day. Ask for and allow help, and above all be kind to yourself. You may not get the balance of recovery and parenting right every day. And that is what it is to be human.
So much more! In my next Blogs I want to chat about mental health and illness, preparing for hospital visits, holistic therapies, more parenting through illness tips, returning to work, life for me two years after cancer, and so much more.
Thanks for reading.
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