For most of us, the early days and weeks of a new cancer diagnosis are chaotic and confusing. There are a flurry of tests, scans, medical appointments, insurance negotiations, family admin, notifications, forward planning, phone calls, text messages, and most importantly, the emotional shit storm. This is not a time when we are able to exercise careful and considered management of all the tasks and worries that have landed unexpectedly in our lap. It can be difficult to triage challenges in these moments of overwhelm.
In an ideal world at the time of our diagnosis, we would be handed an ordered list of what to do next and ‘hot tips’ for our recovery. While I can’t create your individualised to do list here, I can share my advice and some super helpful information from our cancer community. With some relatively minor adjustments I hope that your journey can be a little easier. Our best teachers are the ones who have walked the path before us, and who embrace the art of self-reflection.
My best cancer recovery advice
As a nurse of 20 years, when I reflect on the last three years of my cancer journey, there was a lot information that I wish I had known in the early months of my recovery. I needed practical, accessible and easily digestible advice which spelled out the ‘must knows’.
If I was providing my best advice to someone in my ‘inner circle’, I would share with them:
- Give yourself permission to handover the role of chief organiser. Keep a running list of what needs doing and ask for help. Make a note of what you can easily delegate so that when the offers of help arrive, you have your list ready. If you have someone in your life who understands your needs and is offering to co-ordinate your helpers, say “yes please”.
- A cancer recovery takes a village. Say “yes” to the support that makes you feel good. If you don’t have a large village, consider other options to grow your circle. Talk to your hospital social worker or GP to help you link in with local organisations. Ask the school/day-care that your children attend if they are able to access support on your behalf. Consider linking in with your local charity groups to discuss support options.
- Prioritise quality sleep. Consistent deep sleep will absolutely improve your life. Everything is harder when you haven’t slept properly. Stress, worry, pain, nausea, diarrhoea, and medications such as steroids can all impact on your sleep. Take care of the basics of sleep hygiene and talk to your doctor about a plan to get your sleep back on track.
- Encourage your partner/carer/older children to access emotional and hands on support. Many carers will put their own needs last and they can be unintentionally forgotten in the flurry of the ‘cancer chaos’. The effects of cancer are often long-lasting for a patient’s immediate family. Accessing the right support early will help everyone who has been impacted to process the ups and downs of cancer survivorship.
- Parents– consider extra play dates and sleepovers for your children to allow yourself to rest and recover. Everyone will benefit from a break. Some additional television, extra screen time, and frozen meals/ 5 minute meals – ARE TOTALLY OK. When you are deep in the trenches and ‘just getting by’ – make choices that support ease and allow you to use your energy to recover and be with your loved ones. If you can outsource cleaning and other household tasks, please do. Save your energy to do the things that make you happy.
- A strong mindset is the foundation to a strong cancer recovery. No matter where you are in your cancer journey – do something each day to improve your mindset. Speak to a cancer counsellor, practice daily gratitude (it will change your life), listen to positive podcasts, journal for 5 minutes each day, visualise yourself feeling better, listen to music you enjoy and surround yourself with positive and uplifting people (you may need to grow your circle- this is an excellent opportunity!).
- Commit to appropriate exercise daily (or as much as you can). This is an absolute non-negotiable if you want to fast track your recovery and invest in your future wellness.
- If you are struggling with your health admin, Centrelink correspondence, insurance company correspondence, or need support to organise additional childcare -ask your medical team to refer you to a social worker. Do not spend hours and hours on the phone trying to organise yourself help, if someone else can assist you. These lengthy phone calls are exhausting and will zap your depleted energy further.
- Park your finance worries. Get some expert advice. I know you will say that this is easier said then done, however you stressing over your finances is adding to your emotional and physical load. The act of worrying does not actually solve the problems.
- Link in with the national cancer organisation for your cancer type, to discuss specific symptoms that you need help with. If I had called Bowel Cancer Australia much earlier in to my recovery to discuss my digestive issues, I would have had a much easier cancer recovery.
- If you are a health professional- you can’t be expected to know everything, please do not put that pressure on yourself. In this moment you are the patient. Allow yourself to be the patient.
- Document your journey. I wish I had taken more notes and taken more photos over my recovery. On the hard days, it will allow you to see just how far you have come.
- Surrender the expectations of what your recovery SHOULD look like and take one day at a time. There will be steps forward and then some steps back (physically and/or mentally). This is normal. Your recovery is not a project with KPI’s. Honour yourself with enough time, space and support to recover. Your future self and family will thank you in the long-term.
- Work will be there when you are physically and mentally strong enough to return. There may be an opportunity in your future to change careers or roles. Try to park your work worries until you are feeling stronger. This is where an amazing counsellor can help.
- Above all else, be kind and gentle on yourself. On tough days think about the kindness that you would offer a friend who was in your situation… Honour yourself with that same kindness.
“What I wish I had done differently” – Advice from the cancer community
Delay to diagnosis
“I breastfed my kids for a combined 4.5 years (stopping Oct 2019) and I am trying to not go down the “if only” guilt trip too often. But if only I had checked up on that lump, rather than putting it down to breastfeeding “lumpiness”. If only I had investigated more when I came back from my last overseas trip (June 2019) , rather than thinking it was extreme jetlag (blood test only mentioned slightly below normal Vitamin D). If only I insisted on a breast exam when I had my last pap smear (rather than thinking how strange it is, that doc didn’t do it. In Germany, where I am from, it is part of it),…..” Kat, 41, mum of a daughter and a boy, breast cancer diagnosed May 2020.
“Maybe if I hadn’t waited and gone for a mammogram as soon as I noticed breast changes, I wouldn’t be stage IV. I have to work hard every day at forgiving myself. Thank god for friends who pushed me to get it checked out. Being a former paramedic I can be complacent about health. Because it’s either an emergency or nothing to worry about (in our mindset) it was easy to ignore. Also, having always been really healthy I never thought it would happen to me. These are the ugly thoughts that I never want to admit to others. Who wants to think that they could have done something that might take them away from their partner and children? It’s especially hard when I am asked how long it was like that because a: I honestly have no idea and b: the next thing I get asked is “didn’t you get it checked”? I am not in any risk groups, too young for routine screening and 2 previous scans of lumps showed blocked milk ducts. People can be really judgemental without meaning to be. It’s nice that I can be honest in this group even though it’s painful”.
“My only regret is not being more insistent with my doctors in the years before my diagnosis. I consider myself a fairly proactive patient when it comes to following up on health concerns and I was doing all the things I thought I needed to do to sort out why I was feeling so unwell. I fully trusted the doctors when they said I was not at risk of having bowel cancer because I wasn’t a 60 yr old man and this now haunts me every damn day. If I was more insistent back then, it would have made the difference between surviving and being told my condition is now terminal. Awareness is what is going to save girls like me in the future”. Maria, diagnosed Feb 2020 – stage IV.
“I was very healthy, exercised 3 times a week (reformer Pilates & yoga) and ate well, married with 2 boys working fulltime in Corrections. At the time of diagnosis I was 34, I’m 36 in Aug. I should have taken the signs seriously much earlier on (years). I wish I’d asked more questions about bowel life post surgery and what that could look like. I should have sought a second opinion from another oncologist, I was on the cusp chemo wise and I wish I had done the mop up chemo”
Emotional and practical support
“Firstly I would have tried to engage more with my family through my 8 months of surgery/treatments. I was there in body, but not in spirit or mind. Beyond treatment I wish I’d spent more time on my health and exercise. I think I’d spent so long not being able to eat certain foods and eating/exercising to help my body fight, that getting past that I have been overindulging and not fitting in time for exercise around work. This has resulted in being the biggest I’ve ever been (5-10kg heavier). I wish I’d made a list of what’s important at that time so I wouldn’t become complacent. Lastly I wish I’d offered my partner more support throughout because the scars are still there. I wish he’d not treat me as fragile and sick at times and get concerned when I get lethargic or a cough”. KI, Mum of 2 teenagers, teacher, stage 3 rectal cancer 2019.
“I wish I’d asked more questions and really understood what was happening and what was going to happen – mostly regarding the side effects. Despite my (social work) qualification, I wish I’d pushed more for support. I was so focused on trying to be as normal as I could so I didn’t scare my daughter and in turn didn’t seek the support for myself that I needed. I did ask the hospital for support, they said they’d organise it but haven’t heard anything. I’m not great at being an advocate for myself! My treatment isn’t yet over so I’m sure there’ll be more once it is, but from where I started to now, they’re the things that I wished I’d done differently”. Emma, 32, Mumma to a beautiful 12yo girl, Social Worker.
“I was diagnosed Stage 3 Bowel Cancer four weeks a go, had portacath inserted last week and began chemotherapy yesterday. As I’m only new to this journey, all I can say is that I should have arranged psychology support straight up. It’s been a fast paced nightmare and I am now grateful to have an amazing psychologist onboard . It was a huge relief for me. Friends and family are amazing and supportive but sometimes you don’t want to burden them.
I’ve also connected with Mummy’s Wish and Camp Quality as both look after support for children of parents with cancer. Both have been wonderful to us.” I am a 35 yr old mum to two very little people.
“I wish that I taken time to get over the “trauma” part of a cancer diagnosis, in hindsight I focused so much on each next drs appoint, finishing chemo & getting back to work & getting back to “pre cancer normal”. It wasn’t that until well after I’d finished treatment & been back at work that the trauma of what just happened hit me”.
“I spoke to a councillor too and it was heaven. I was surprised at how much it helped and I had a fantastic support network. I highly recommend it for others as well – during treatment and (for me) afterward while trying to live with survivor guilt”
“I wish I had accessed support services earlier. I felt so alone and finally reaching out and asking for help made all the difference. For me, having the opportunity to discuss my thoughts and feelings with a councillor was a huge relief. In front of my friends and family, especially my kids, I would always stay positive but inside the fear and anxiety was eating away at me”.
“The only thing I’d do differently is accept more help. It’s such a long road, with many ups and downs. People always says “let me know what I can do” but I found that quite unhelpful. I couldn’t think clearly, and I had trouble articulating how I felt. I wish I had asked for some help, like meals or housework. I had my mum with me, but she was exhausted looking after my young bub, getting up in the night for feeds. The help I wish we’d had wasn’t even for me, but really for my mum! She was incredible, but a year of basically raising my son for me really took its toll”. Kristan, mum to a 2.5 year old boy, who was 5 months at the time of my diagnosis.
“I regret being so private about my diagnosis for as long as I did. I only went FB public at 10 month post diagnosis. It turns out I have a really bloody awesome village that I didn’t know existed prior to this. Nb: I did scalp cooling and retained most of my hair so to the untrained eye I didn’t have as many physical changes.”
“I feel proud the way I have handled my situation. Reaching out for help when I needed it, accepting help when it was offered, saying a firm No to unwanted advice ( have you looked into alternative treatments? – No, and I am not going to until I feel not happy with my chosen medicine man anymore…. is what I used to say), I didn’t waste any energy wondering about the reason I got this or getting angry about it. (My dad had epilepsy when I was growing up – had successful surgery when I was 17 ). I never heard my parents complain about the situation. They acknowledged how hard it was, but just got on with it. I think that gave me a lot of resilience – I hope my kids will learn the same), to get going and try to enjoy this wonderful gift of life”.
“Im 59, living with my partner in a different state to my grown up kids and grandchildren…stage 3-4 diagnosed last year during COVID ..one year on and all clear. I wish I had shown everyone how scared and how sick I felt because I always put on a brave face, kept working and hid my feelings. Now everyone are just so ‘ho hum’ and I still don’t hear from my kids much. They just treat it all like I had a bad cold!!”
“Exercise!! Much more exercise. And I wish I’d documented more – not so much treatment details, but the experience. I couldn’t write much at the time but wish I’d kept more of a journal – so many important lessons are still easy to forget”.
“Rehab for my abs! Physio and clinical Pilates. Didn’t even think of it at the time or understand that I would have abdo separation from surgery (my scar is bra line to below undie line)”
“I wish I said yes to surgery straight away. They said I could watch and wait as the cancer was small. But then when I said I can’t just watch and wait I have decided I want the part of my bowel removed. Two weeks later found out the cancer did spread to my lymph nodes so I needed chemotherapy for a second time as I had previously had breast cancer. I went from stage 1 to stage 3 all because a surgeon said he recommended I went down the road to watch and wait.”
“I wish I had investigated treatment risks more. If I had known the chemo can cause clots I would have insisted on blood thinners thus preventing the stroke I had 18 months ago. It has been hell on earth and even worse than my stage 4 diagnosis”
“I wish someone had spoken to me about fertility preservation much, much earlier. It was almost an afterthought and by then, it was too late. It was a delay in starting chemo by 2 weeks so you can have kids in the future (I don’t have children) or start chemo now and you’ll probably never have children…… I’m 29. I was 27 when I was diagnosed”. TK, communications officer, diagnosed stage 4c December 2019.
“I wish I’d had more time to organise egg freezing before treatment started”. 40yo mum to a 13 yr old boy, I work in admin/HR, sigmoid colon cancer with secondary to bladder (and suspected uterus) Feb 2020.
“I don’t have a lot of regrets or things I would change, but one thing I wish I had researched more was my fertility options. I had just broken up with my partner before the diagnosis so I think I had written off the idea of being a parent again, and jumped right into chemo without asking all the questions I should have around IVF/egg retrieval. At the time I felt I was being selfish to consider that and put any risk to the recovery plan. Now that I am on hormone treatments, I think the ship has really sailed and I don’t even have the option of a surrogate, and my child is too young to be considered for most foster/adoption situations. I worry I will likely wonder ‘what if’ for some time and feel guilty for my daughter not having a sibling which I so wanted for her.” Lauren, single mom of 3 year old, diagnosed with breast cancer in Oct 2020.
Focusing on what is important
“I am really proud at how I handled everything. I was involved in my treatment, seeking advice and treatment from my naturopath alongside my chemo and radiation. I’m happy with all the questions I asked and the knowledge I gained. I took time off work and appreciated the extra time I could spend with my toddler. I learned not to feed off conflict and value the real friends I have, and leave the drama filled relationships behind. My one regret was starting to fall back into old habits once everything felt normal again. Putting up with other peoples crap and putting other people before myself and my family. I have since re-evaluated things and am back to doing what’s best for myself and my family, even if sometimes it means losing out on income, or not being able to attend events. It’s a new level of calm and I like it. My husband and I both are focusing on our immediate family and making sure they have the best start to life.” Lauren. Mother to one little boy 2.5yo at diagnosis, step mum to boy and girl, 15 and 18 at diagnosis, Breast Cancer 2018.
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