I became unwell on March 29 March 2022, a few days after my teenage son tested positive for Covid. I know I was well up until then, as I had gone out for a long walk the night before and felt perfectly normal. The next day I was sick with Covid-like symptoms but my son was far sicker than me. However, he recovered shortly after and I never did. I have been unwell since then.
Here is one of my diary entries from isolation:
“My cough keeps getting worse, deeper, chestier and aches across my heart and lungs area. It hurts to take breaths. And pain flows across my upper back and across my chest. I am taking Panadol and ibuprofen every day at least 3x a day just to take the edge off the pain. My hands are blue. I am so hot and I sweat and feel sick. But I am also cold frequently and chilled. My heart races like crazy then feels so slow and weak. I feel so fatigued I can barely get dressed, my brain feels like mud and sludge. I just want to lie down in a dark place and not move. All day. Everyday”.
I had been existing and struggling with Long Covid symptoms for 66 days – over two months and I had been unable to work, live my life, or function in any way. I had been in and out of hospitals, doctor’s offices and was unable to work or care for my family. I thought was at rock bottom. I was feeling really unwell but I went for my routine mammogram in late April, followed by an urgent ultrasound and biopsy and on June 2nd 2022, I was diagnosed with breast cancer.
How did your breast cancer treatment intersect with your experience of Long Covid?
The news of my cancer diagnosis felt like kicking me while I was already down. How could this possibly be happening to me? I was so angry in and in disbelief. I felt betrayed because I lived a healthy life. I didn’t smoke, didn’t eat poorly and I lived an active, social life. I felt like life was so unfair. How had this happened to me?
I was angry but mostly I was really scared. I was also scared as I didn’t know if I would have enough spirit and energy in me to fight a cancer as I was already in such a poor state of health due to Long Covid.
I also felt very alone in that I did not know anyone else who was struggling with Long Covid AND cancer. I didn’t know who to turn to for help. I was very worried I wouldn’t make it.
What were some of the challenges you faced?
One complication I found is that some symptoms, such as fatigue, brain fog, chest pain and back pain can be experienced by both cancer and Long Covid patients. In the end, I decided to stop trying to figure out the cause of each symptom, and just focus on healing.
One of the very real challenges I had was that despite many doctors visits and specialists and tests, there was, in my experience, a very real avoidance or unwillingness to diagnose Long Covid. This created a sense of shame and denial as I was told all my tests were “normal” despite knowing something was very wrong in my body.
I was also very worried that my cancer treatments would permanently damage my heart and lungs as they were already very stressed from my Long Covid issues. I was worried that the stress of treatment might be too much stress on my fragile system. I talked these fears through with the oncologist and the surgeon and we took extra precautions around my heart and a few extra tests and changed some plans (I had three weeks of radiation at a lower dose rather than one week at a higher dose, for example and we explored different breathing techniques to minimise radiation damage) to ensure I could cope with the radiation.
How did your social support network (friends, family, healthcare providers, etc.) help you navigate this dual diagnosis? Were there any particular sources of support that were particularly helpful?
I found Long Covid Support Facebook group and one for Breast Cancer to be the main sources of external support for me. It was in these two online spaces that I found the most understanding, empathy and advice. I also have a small group of exceptionally close girlfriends who, along with my husband and my children, were a huge support and they allowed me to be me, in all these ugly phases of diagnosis, surgery, treatment, etc without judging.
I found a GP that took a more holistic well-being approach and she has taken care of the ’whole person” – she tracks all my medical reports but also monitors my bloods and health generally and offers advice on overall healing and rebuilding from a holistic “whole person approach – quite the opposite of the specialists who all just focus on their one area of expertise.
Did you encounter any misconceptions or misunderstandings about breast cancer or Long Covid from people in your life?
I was quite astounded at how differently I was treated with cancer diagnosis compared to my Long Covid experience.
With cancer everyone wants to help you, they try to empathise, things are done urgently, you are identified as a “patient” and treated with some kindness, and there is a real sense that you are very unwell. Employers also want to be seen to be supportive, friends and family rally around (for the most part) and everything starts happening (relatively) quickly to aid your recovery. Everyone wants to bring cakes and dinners and send flowers and visit you when you have cancer. Everyone understands.
I was quite astounded at how differently I was treated with cancer diagnosis compared to my Long Covid experience.
This was completely different to the Long Covid experience, which was largely a solo experience. It is very lonely and isolating. I struggled to get tests to diagnose things and struggled to get doctors’ appointments. Specialists only looked at the one symptom/body part and not the whole picture, I felt belittled and gas lit by the medical profession at times (especially when tests come back “normal”). I felt constant pressure to return to work sooner. I felt alone, abandoned by the medical establishment who seemed blind to Long Covid suffering and the devastating impacts on people’s lives…I felt alone and abandoned and invisible.
The two experiences were startlingly different.
My Long Covid recovery has really been a self-driven experience. I have chosen to try all sorts of things to get well and also to document my experiences. I have also been actively following research overseas to find out what research is uncovering in larger population samples. I have also read all and any books that might help my recovery, such as information on chronic fatigue and autoimmune illnesses and cancer recovery. There is research that points to a connection between cancer-cell activation and Long Covid cells and I am very interested in this also. I alarmingly heard this dual diagnosis of breast cancer and Long Covid called the “deadly duo” which was frightening, but also reminded me that I am literally fighting for my life.
With breast cancer treatment it seemed to be the opposite experience to myself directed approach with Long Covid. There is a plan made for you by doctors and surgeons and you are very much expected to go along with the plan they have developed. They are the “experts” and you are not really encouraged to ask questions. I have never seen my CT scans, my ultrasound results, blood test results – everything is held by the “experts” who know best. This was quite interesting to me. I am very grateful for their knowledge and advice and excellent surgery and oncology skills but it felt completely different – disconnected and impersonal and as if I am a number on a conveyor belt.
Another misconception for me was around what a breast cancer patient should look like. I was thin, my breast got bigger (thanks to swelling and fibrosis and lymphoadeama) despite a good portion being removed and my hair did not fall out, as I did not have chemotherapy. This meant I did not look like a “sick” cancer victim. In fact, I look quite well most of the time that people see me out and about.
Some people think I am over my “cancer scare” and ask if I am “cancer free” now. They say I am lucky that I had such a good recovery. That I am “cured” of cancer and suggest I should be over illness. I don’t have words for these people. I have just had to accept that some people really do not get it how traumatising it has been. The experience changes you and the trauma lives on. This has changed everything for me.
How has your experience of breast cancer and Long Covid changed your perspective on life, health, and wellness?
I thought I was really well, before my Long Covid experience. I had climbed Mt Taranaki, recently cycled the Otago Rail trail, I walked regularly, ate well, had a good, busy, active life. I was mostly happy and fulfilled. But when I look at the breast cancer risk factors now, I see that I really ignored or was unaware of some key risks….
So, the two illnesses have been a real wake up call to me. A cancer diagnosis seems to put everything under the microscope and focus the light on the things that are important. My perspective on life has really changed. I am no longer prepared to wait for a better or more convenient time to do the things I need to do, that I want to do. I see that I don’t have the luxury (or naivety of thinking I have time) of time, I have lost that.
I was so confident before all of this that I had another 40 or so years to do all the things I wanted to do. But now, I feel sure that I need to start doing those things now that are important. This is challenging as I am still healing from both illnesses and my energy levels are very low still. I am nowhere near back at my old life, I am still resting every day, working reduced hours, have terrible brain fog at times and suffer from ongoing Long Covid effects and BC complications which require therapy and treatment and support.
My attitude now is that my healing is my number one priority. Every single thing I do is to support my healing and my intention to move from the survival mode (of the past 400+ days) to a thriving state of being. Today is my focus. Healing and loving my family and being grateful and enjoying today are my priorities. Everyday I aim to be a tiny bit stronger in my heart my body and my mind.
My perspective on life has really changed. I am no longer prepared to wait for a better or more convenient time to do the things I need to do, that I want to do.
What advice would you give to someone who is currently facing a dual diagnosis of breast cancer and Long Covid? What resources or strategies have been most helpful for you?
I appreciate that everyone’s journey is different. My experience of breast cancer and my experience of Long Covid are different to your lived experience. What I offer here are just some suggestions of things that helped me along my journey. Maybe they might help you on yours, but I am certainly not telling anyone what they should do, just offering some tips to use if they are helpful and sharing my experience in the hope it may help just one person…..so, here goes…
Build your team:
Find medical experts and treatment practitioners that you like and trust. Ones that empathise with you. Medical experts that “see” you as a complex person and are able to care for your dual diagnosis in a considered and caring manner. I have seen lots of people/specialists/doctors/therapists, some I chose to keep on my “team” and others I have never seen again, as the fit wasn’t right. I have built my team of experts around me. My “team” includes my G.P, my oncologist, a surgeon, a physiotherapist, a breast nurse, a respiratory expert, a cardiologist, a Long Covid nurse (finally got a referral!!) and a massage/scar-release therapist.
Be your own best advocate – you are the expert:
I do believe you must be your own advocate. Be your own expert. You have to really be the squeaky wheel, you have to be able to ask questions, follow up on things, demand second opinions, ask hard questions about priority and access and tests and outcomes and risks and side effects. Read everything, get to know all the terminology and be the best informed on all and everything to do with your cancer and your Long Covid symptoms. You are the expert on you. You must take charge. If you are too poorly to do this, bring a confident and caring person with you if you can, who can take notes, ask questions and advocate for you.
Less warrior, more Love:
I decided to stop thinking of my body trying to kill me and had betrayed me….and to ignore language like warrior, survivor, fighting cancer, beating cancer, and other war like imagery and to instead think of my body with love and kindness, that it was doing everything it could to protect me and heal me. That I could help my body by caring for it, by nurturing it, by loving myself more and being kind to it.
MEND – a daily dose of MEND (an adaption of MEDS):
- Mindful/meditation – breathing exercises are excellent or ANS system, yoga, etc.
- Exercise – stretching, moving gently and slowly to build strength and flexibility post-surgery and post treatment (PESE/PEM is an issue so go very, very slowly here if you have fatigue issues like me).
- Nurture – self-care, including lots of rest. And care of people/pets and things that are important to you.
- Diet – This means to me….supplements (yes), healing foods. Eating well, mostly vegetarian, loads of vege, fruit, berries, (colours), vitamins, kombucha, good oils, green tea, filtered water, absolute minimal white carbs/sugar.
One of the more challenging things is that cancer recovery is very big on getting active quickly. For good reasons. But, with Long Covid, many of us suffer from extreme PESE/PEM “crashes” when we do even a little bit of additional exertion. This is one of the most frustrating things in my recovery.
I have found that yoga, breathing exercises and gentle stretches are all good. Pilates (if it is gentle and at the right level for you) can build strength and help you recover from surgery. I have found sessions at the local pool have been a game changer for me personally. I started with 10 minutes and one length. I do not swim. I move my arms around and my legs and aqua walk, float and kick a bit…it builds shoulder and back and arm movement post-surgery and the cool water helps with my body temp dysregulation and heart rate / oxygen rate for the rest of the day.
Lucky charms and support crew:
My lucky charm is a special necklace I wear everyday – it gave me great strength through this journey.
My support crew is a tight group of people, they are the few super close friends (plus my dear husband) who have demonstrated that they have the right skills and track record to be my tight support crew. They have been there throughout – offering help, kindness, positive words and sometimes to just let me rant and cry and rage and be scared and afraid without judging. Your support people might be just one person, or your pet, it is quality of support not the quantity of supporters that really counts.
You are not alone:
I think feeling not alone is crucial. I felt quite alone when I got my diagnosis. I was so sick with Long Covid, I couldn’t imagine how I could survive another life-threatening disease on top of that. I was so scared. I have found that the breast cancer network and the Long Covid support online, both communities are amazing and have really helped me. But I would have loved to have been able to find at least one other person struggling with both diagnosis at the same time. It is scary. It is overwhelming. I’d say to that person, you are not alone. I am here. I will walk along besides you.
What do you hope that others can learn from your story and experience?
For me, it was the learning that I needed to prioritise my healing journey above all else. I hope others take away this message and feel encouraged by this and supported to also do the same. It is not just one, but two brutal, debilitating illnesses you are facing and you are going to need all your energy to rebuild yourself.
And it is a very long, very slow recovery. Cancer treatments are brutal and if you are starting already from a very unwell position, it is going to be a long slow recovery and return to good health. You are going to have to be super kind to yourself and accept your recovery will not be linear, it will not be progressive, it may be up and down, backward and froward and painfully slow. But even one tiny step counts.
My progress is not linear, it does not follow a path I recognise. It lurches and dawdles and back tracks but I have to somehow get through it and heal.
For over 400 days my life has been on hold as I struggled to survive a deadly duo of two terrible illnesses. If you are out there, struggling with invisible, chronic, hard to diagnose, complex illness with a cancer diagnosis out of the blue, with Long Covid issues or a combination of these like me….You are not alone. My greatest hope is that, in sharing my story, it helps at least one other person feel less alone in their own journey…. And to give them courage to trust themselves in their medical journey. Only then will sharing my story have been worth it.
I am so frustrated that I always want to be so much further recovered than I actually am. This is quite a blow to my confidence. Slowly, slowly I must proceed, as frustrating as this is. My progress is not linear, it does not follow a path I recognise. It lurches and dawdles and back tracks but I have to somehow get through it and heal.
I am still in the world, breathing in and out. I don’t know what the future holds, or if I will stay cancer free for one month, one year, ten years, twenty years or if I will have fifty years of good health and die of old age in my 110th year….but then, I realise, no one else knows either. I also don’t know if I will fully heal from the ravages of this covid infection that has tried to attack my entire ANS system, my heart, my lungs, my immune system…We don’t know the path of Long Covid recovery and healing – this too leaves me facing a life of uncertainty also. I am not who I was, but I do not yet know who I will be, I have left the known and familiar and I don’t know what the future holds….all I can control is today and today I choose life, health and recovery. I breath deep and I am here. I will heal. I hope you will also. But whatever happens, know you are not alone.