Wednesday I had a blood transfusion because my haemoglobin levels were low. I have only had one before, six years ago and I recall the boast it gave me then. Desperate now for anything that will give me a similar boost, whilst any invasive procedure can be a problem, I hoped it would go without a hitch. It went slowly, taking six hours in total but with much care from the nursing staff and plenty of cups of tea it went without any problem. Two units of blood seeping round my body.
Having cancer over a long period presents its own problems in addition to disease progression. It’s the cumulative impact of lots of different medicines and over time they can pummel you physically, psychologically and existentially. I know I am not the person I was six years ago and recent decisions to retire (2016), resign from Chair, Probation Institute (2018) and the many lifestyle changes – poor mobility, coping with everyday matters, even reading on bad days – remind me of the journey I am on. I nearly put never-ending journey though the fact that there is an ending, uncertain as to timing, and already delayed much longer than I had originally predicted, that end-game nevertheless is always hovering.
I have been feeling this accumulating bombardment of this fatigue much more recently, ironically at a time when the general progress on my cancer and my pain levels are reasonably controlled. So in no particular order I have felt chronically tired, nauseous , anxious, unable to focus on cerebral activities such as reading or blogging, what I call ‘muzzy headiness’, nighttime problems, loss of appetite, anxiety about eating and so on. I have noted that this cluster of issues is common across many cancers and known as Cancer-related Fatigue. (CRF) These definitions I find helpful:
‘CRF is a complex multidimensional problem characterised by reduced energy and increased need for rest unrelated to recent sleep or activity that is known to affect quality of life adversely by reducing mental and physical functioning, disturbing mood, and interfering with usual activities’
CRF is “a distressing, persistent, subjective sense of physical, emotional and/or cognitive tiredness or exhaustion related to cancer or cancer treatment that is not proportional to recent activity and interferes with usual functioning”
When I say to people I have fatigue it is often misunderstood. It is equated with being tired and help offered revolves around getting more rest. Whilst tiredness is a component it is not an equivalent at all. Having a good rest helps but does not relieve the other factors. Until recently I would have said the biggest indicator of fatigue for me has been my muzzy headiness or brain fog. An inability to do anything which involves thinking so reading, writing and taking part in discussions, becomes severely compromised. For me this has been the worst aspect of the last six months where it has been hard to do anything productive. I had this problem in the months leading up to retirement in 2015-16 and the oncologist put me on low dose steroid which had a magical effect enabling me to complete a load of writing projects and prepare for my valedictory lecture. It also brought me my appetite back for a while something which I had missed. These impacts don’t last long and even though I remain on the steroid the impact of big new treatments minimises it’s effect. So this CRF was returning with increased persistence – a chronic tiredness no matter how long I slept, sleep disturbance, muzzy headiness and for the first time a level of anxiety I have never previously experienced. Experiencing all this at the same time as a heatwave was particularly problematic, though provided I protected myself from the heat I could minimise this impact.
One impact, anxiety, was a new and unexpected element of this fatigue. I have had several surprising features of this – recently giving a lecture which I blogged about, going to meetings, doing media work but then, out of the blue, I began to find mealtimes difficult. I know I have eaten less over the past year and the weight loss has been noticeable. That has not been a great problem given how overweight I have been but not sure it’s to be recommended as a diet! But to find myself anxious about eating to the extent that I could not eat sometimes and once recently I had an anxiety attack around eating was disturbing. Talking to friends and family and the medics has been really helpful and I think, having recognised it as a problem, I am slowly working on it. To see such issues listed as part of CRF was also helpful because you could connect why it was happening.
So this is how CRF has impacted upon me over the past few years. I am sure that different aspects will dominate for each individual just as we react individually to each drug. I find tiredness frustrating but I can live with that, I find muzzy headiness more of an issue as it challenges parts of me which have been really important. I have found the anxiety challenging too as it’s not a feature of life I have experienced too often. But I am working on that and if I need to I will seek help having recognised how debilitating it can be. So the big question is what has two units of blood done for me?
Well I don’t know how long lasting it will be, I can only live in the present. But over the past two days I have felt energised. Firstly on the same day, though physically tired, my head cleared. It’s almost a physical feeling it’s as if the clouds fogging up the brain dissipate. In the next couple of days that clarity has enabled me to do things such that write this blog, the first for several weeks. I’ve not tested myself physically but went out today and felt ok and at the moment I am eating better. So, wow, blood transfusions whilst doing its job of decreasing my anaemia, I hope, the medical reason for it, seems to have given me a clear lift.
It is a battle as CRF is never far away and when cancer sufferers talk about fatigue they are talking about something specific albeit with multiple dimensions. I live with it all, my natural positivity gets me through most of this and when doubts set in friends are there to keep me going. The length of my survival over 6+ years contributes to your capacity to rise about it too, though accumulated impact on your body of so many drugs is challenging. So for now I’m still here and hope this mental respite stays for a while. Perhaps I should introduce black pudding into my diet?