Cancer fatigue is my absolute nemesis. I actually didn’t know about cancer fatigue at all until I started looking into it this year. For everyone who’s been following my adventures I have been working on them in chronological order, but today I am taking a little detour to discuss the thing I find is the hardest part of my whole cancer journey to date. Cancer fatigue.

During the time I had with the bowel cancer chemo I was often tired but put that down to what my body was going through, and in many ways that was correct. I returned to work in 2022 and knew I was only operating at about 70% of my pre cancer and treatment capacity, but put that down to being back at full time work still trying to heal and dealing with other issues such as my diabetes and a hernia which is getting it’s own special blog shortly. I then got diagnosed with breast cancer and had the radiology and experimental chemo which is currently ongoing. All of this has left me incredibly tired. Now, what I have learnt is that there is actually a thing called ‘Cancer fatigue’ which is very, very real and it is going to be an issue for me forever more.

‘Cancer Fatigue’, whilst recognised as a long term side effect of cancer is very, very difficult to prove medically. I think this blog is more about informing people about ‘Cancer Fatigue’ than anything else. I’m putting a lot of references at the end of this blog about it because I believe a lot of people living with cancer or identifying as cancer survivors actually suffer from this, mainly in silence. Time to give this side effect a voice!

Fatigue is annoying. Cancer fatigue especially so. It’s like being ‘tired in your bones’. For me it’s similar to when I had glandular fever when I was younger. You can’t control it. It lurks and strikes at any time and it’s difficult for other people to understand. I remember I used to say with glandular fever, why couldn’t I just have a broken arm. If it was something physical it would be so easy for other people to see it, sympathise with it and the bonus would be you could physically see it heal as well.

Unlike a broken arm, cancer fatigue isn’t visible and strikes late in the game. When you are dealing with cancer you go from specialist to specialist and so each look at their individual aspect of the treatment. I have had over 10 different specialists during my adventures to date and thankfully each of them can say their contribution to my journey has been ‘successful’. Every operation has been ‘successful’. Most treatments have been ‘successful’. Blood tests, follow-up appointments, mental health appointments all ‘successful’. With each step family and friends have heard ‘success’ and thought ‘she’s good again’. Which I am. Don’t get me wrong, I’m incredibly grateful for this success and the fact that it allows other people to celebrate my getting ‘well’.

The problem with cancer though is that every time you have surgery, or chemo, or radiology or counselling or any other help during the whole cancer treatment process it impacts on who you are physically and mentally. Holistically cancer patients live beyond treatments with a variety of issues including anxiety, sleep disorders, PTSD and Cancer Fatigue just to name a few long term side effects. More difficult still is that apart from your GP, it is very difficult to access a specialist who can put all of this together and recognise long term side effect impact. ‘Cancer fatigue’ is a classic example of this. It is an insidious little beast that changes your lifestyle permanently, and it can only be recognised when, after every ‘success’ you’ve had medically, you are still fatigued. It’s a sneaky little sucker that often hangs around way past it’s used by date.

I love that people currently see me as well and healthy. I love that they see very little difference in the person I was before going through what I have. I recognise that this is what I want people to see, and that I present myself ‘well’ to others. I’m kind of proud of that. However, in all honesty, living with diagnosed cancer fatigue is difficult and I have days I just sleep. I actually have to plan days in advance because of cancer fatigue. Going to a friends for coffee, looking after my grandchild, going to visit people away from here, these activities all need to be planned to ensure I have enough energy for things to be enjoyable for everybody. There is no point in seeing people you really love, like and appreciate if the time isn’t well spent. Cancer fatigue means I can’t be who I once was. I can’t just jump in a car anymore and drive for 5 hours to have a great catch up. I can’t go and do shopping then run a heap of other chores successfully. Some days I don’t have the energy to do more than answer the phone. Some days I can’t even do that.

I know that now days some friends think I’m overly pedantic about setting coffee dates or organising meetings or phone calls as some sort of corporate appointment. Some people think I’m lazy. I know my adult kids think I’m odd about being really organised about times and dates and go “Mum’s gone a bit weird”. Compared to who I was pre cancer, I agree. I’ve lost quite a few people from my life because of this. Cancer fatigue ages you quickly and makes it difficult for some people to stay in your world because they think you are just making excuses not to see them or that you are now recovered and just boring. You know what, I probably am now very boring comparatively, but that’s the price I’ve paid to be here. I just love and thank those people who have allowed me to be even weirder and more boring than pre cancer without even knowing about my cancer fatigue. You know who you are.

I know that this is a serious blog, written in a style not as conversational as usual. It’s because this is one subject that I feel needs to be given a high priority. If you are living with cancer or a cancer survivor and have experienced fatigue in a way that impacts on you, know ‘Cancer Fatigue” is very real. If you are someone who has a friend or family member who has changed in their spontaneity or energy in one way or another, perhaps this is what they are experiencing? For me, it is and shall remain my challenge. However, whilst it’s a particularly unpleasant dimension of my life now, due to all my cancer experiences, it’s something I can certainly live with, even if I’m a little bit more weirder and more boring than who I was before.

For further information on Cancer Fatigue and other long term side effects of cancer please visit:

https://www.cancervic.org.au/cancer-information/treatments/common-side-effects/fatigue

https://tidsskriftet.no/en/2017/11/klinisk-oversikt/chronic-fatigue-adult-cancer-survivors

https://www.cancer.net/survivorship/long-term-side-effects-cancer-treatment

https://www.yalemedicine.org/conditions/cancer-related-fatigue