Life – Terror. Ecstasy. Fight. Denial. Flight. Failure. PAIN. Forgiveness. Reconciliation. Hope. Love. Peace – Death.
CRF – Cancer-related Fatigue
Fatigue is by far the most common symptom experienced prior to a cancer diagnosis. According to a 2018 patient survey, 56% of patients will experience fatigue in the lead up to their diagnosis.
It is important to remember that many different things can cause fatigue; anxiety, depression, dietary deficiencies, other conditions. Fatigue is very common in men with prostate cancer. Around three in four men with prostate cancer, 74 per cent, will have fatigue at some point.
Many men are surprised by how tired they feel and by the impact it has on their lives. For me it is one of the hardest parts of living with prostate cancer. It can be extremely frustrating, especially at a time when you are wanting to do more, to enjoy what time you have left, to the fullest.
The fatigue that comes with any cancer is known as cancer-related fatigue (CRF) and it is characterised by extreme and or persistent exhaustion that disrupts your daily activities and function.
People who have CRF have no energy and find it extremely difficult to complete even the simplest of, everyday tasks that are normally taken for granted. Acknowledging and taking action when experiencing fatigue may be key in diagnosing cancer early.
Cancer-related fatigue (CRF) is different from the fatigue of daily life. It is more severe and is often described as an overwhelming exhaustion that cannot be overcome with a good night’s rest. Some people may also describe it as constantly feeling physically weak, drained or have difficulty concentrating (“brain fog”). Tiredness that remains even after rest or sleep, it keeps coming back, or is getting worse.
I describe it as, waking up, the day after you had a long, 2/3 hours, strenuous walk? Despite having 7-8 hours ‘good’ sleep you wake with your legs feeling like jelly, you are still tired? This tiredness would, eventually pass, with CRF it does not, your legs feel weak, permanently and even weaker, after physical exercise.
I have advanced prostate cancer, Gleason 7, radical proctectomy surgery March 2016, SABR radio therapy, 2019. No cure. Palliative care. My PSA although low is steadily increasing. A cancer buddy, friend told me, shortly before he died, that ‘he didn’t feel comfortable going out any-longer’ (I was trying to persuade him to go see a band), he said ‘he didn’t have confidence in his legs anymore’. His PSA was higher than mine, he was older, he was receiving hormone and chemo therapy. Everybody is different, and react differently.
I go to bed around 11.00 often as early as 10.30 and wake around 7.30. I am usually asleep within 20 minutes. On a bad night (a mini panic/anxiety attack night) I might wake earlier, 5.00-6.00am on a good night 8.00am, I am prescribed a cocktail of medications for (other) long-term conditions, I self-prescribe pain medication for some ailments. Without pain meds, undisturbed sleep, is now impossible.
I have started to have confidence issues, about going out, feelings similar to my friend (Dezzy), that #my legs will let me down’? Pre and post diagnosis, I have always had fatigue issues? Since Radiotherapy, I am noticing this more.
I go to bed, sleep normally, yet wake up still feeling very tired, often in a pool of sweat. I am continually finding myself more tired than usual during the day, slightly breathless during, or after, only minor physical activity, such as climbing a domestic staircase. I feel continuously tired.
Currently, working from home (Covid), I am not exercising at all, my weight had increased but I have that back under control. My fitness levels are none existent and not getting better. I routinely struggle to climb stairs at home. I have difficulty concentrating, focusing and I become confused more easily. I am hugely demotivated and easily distracted. Work, keeping busy helps, as does writing a Blog.
- can’t be arsed,
- weighed down,
- done in
Fatigue affects my mood. I feel sad, depressed, anxious and the hardest of all, guilty. Guilty, that you can’t do normal things anymore. I rely on my wife, Gail and others, (work colleagues) to do a lot of ‘my stuff’ for me. You have no choice but to learn to depend more on others (usually a significant other).
The pressure on that ‘other’ is immense. I struggle with the idea that ‘soon’ I might not feel able to go to work or see my friends and family as much as usual. This is overwhelming at times making me feel even more lonely and isolated.
I am finding it increasingly difficult to do (or want to do) normal things, such as:
- getting dressed, having a shower
- preparing food
- social activities, seeing friends and family
- sleeping (insomnia)
- remembering things
- basic housework, tidying up
- understanding new information
- making decisions.
It is not (exactly) known why men with (prostate) cancer commonly get fatigue. It’s likely that lots of different things are involved, including the following –
Prostate Cancer Itself
Every cancer is different. Cancer stops normal cells in your body from working properly. This can change the way your body uses energy = fatigue.
Treatments for Prostate Cancer
All treatments for prostate cancer (can) cause fatigue. Fatigue is likely to be worse if you have hormone therapy, radiotherapy or chemotherapy, and more again if you have more than one treatment at the same time.
Stress, Anxiety, Depression
Feeling stressed or worried can cause fatigue. You might be worried about having treatment (or not having treatment)? Depression can also cause fatigue. Fatigue can cause depression – Catch 22.
Symptoms of Advanced Prostate Cancer
Some problems that can be caused by advanced prostate cancer, such as continuous pain or anaemia, also cause fatigue.
Pain or Pain-relieving Drugs (see previous posts)
I have continuous pain caused by (prostate cancer) and other chronic health conditions. Pain makes fatigue worse. Catch 22. Some pain-relieving drugs can also cause fatigue.
Other Health Conditions
Other health problems, diabetes, arthritis, cause pain = fatigue.
Not Sleeping Well
Not sleeping well can make your fatigue worse. Having fatigue can make it harder to sleep well. You might have worries (like, your boss in work is a cunt), that keep you awake at night. Or, you might wake up in the night because of symptoms of prostate cancer or side effects from your treatment, such as having a hot flush or needing to urinate. Or, your chronic psoriasis might flare-up, or, your diabetes neuropathy, or, or, or …..
Lack of Physical & Mental Activity
Many experts agree that being inactive makes your fatigue worse? Fatigue (& constant pain) makes you not want to engage in (any) physical activity? You don’t have any energy (to spare), it can be difficult to be active? Learn to become selective, choosing your activities carefully, limitations, compromise?
Other Things That use up Precious Energy
Routine, normal activities may also use up your energy and make your fatigue worse – going to work, caring for other people, meeting up with friends or family, socialising. If you are lucky and have life-long treatment for prostate cancer, you can expect long-term fatigue. Long Life Cancer Treatment v Quality of Life? Tuff Choices.
Radiotherapy often results with increased fatigue, getting worse over time, and sometimes doesn’t start until long after radiotherapy has finished. Yet, some men find that their fatigue improves when their radiotherapy treatment finishes. Everyone is different.
Prioritise. Compromise. Choices
You might not have enough energy to do everything you used to do. Prioritise? Only, do the things that are most important to you. At some point you will only be able to do the things ‘most important to you’ and nothing else.
The five Ps
- Plan – write a list of all the things you have (want) to do.
- Prioritise – work out what’s most important to you (each day) and put that at the top of your list.
- Pace – allow yourself extra time to get things done & if possible stop before you get too tired.
- Permission – give yourself permission to do things differently and take things easier than normal.
- Position – make the task easier, could you sit instead of stand?
Once you start to become depressed or anxious, ‘feeling down’ makes you less energetic, and worrying all the time affects your sleep and makes fatigue worse. Talking to someone can help. I find that writing a blog helps.
Prostate Cancer Changes Every Fucking Thing?
The old (normal) pattern of your life, relationships, friendships your roles within your family, within your work turn upside down. This is challenging, not just for you but everybody in your life. If you have fatigue, you feel too tired to do the things you normally do to look after yourself, to look after others. You cannot NOT become more dependent on your partner, family and friends. Frustrating. Stressful. Unfair. Guilt.
You might find it helpful to:
- learn more about fatigue together
- talk about how you feel
- get (outside) support
- get help with practical matters such as work, money or household tasks
- develop a wider support network including other family members, friends or health professionals.
Push yourself? Try to (still) make time for family activities, holidays, enjoying time together. You may not feel up to some activities that you have done together in the past. It could be a chance to try something new. I tried to ‘re-visit’ the guitar, sadly that turned out to be a bridge too far.
For me knowing helped? Knowledge is power, now that I have researched fatigue, cancer fatigue (CRF) I feel better about my situation.
Thanks for reading