Chemotherapy effects and tips: BRiC's Collective Voice

 

A recent Sunday discussion focused on chemotherapy, how we prepare for it, how we deal with it and how it affects us.

Naz explained that along with the physical side effects, research shows that cognitive function can be impaired by chemotherapy and many of our members related experience of “brain fog”, often lasting long after chemo has ended. Cognitive impairment can also be caused by the emotional and psychological effects of a breast cancer diagnosis; and made worse by the ongoing treatment many of us face. Some of us who escaped chemotherapy still recalled a feeling of “chemo brain”. There is hope, as shown in some of BRiC’s research, that we can improve our neural networks with specific training. But chemo-brain is just one of the many side effects we discussed, along with hints and tips on how to cope with chemotherapy, and some of the things we wish we’d known before it started.

For many of our members chemotherapy was the hardest part of their treatment. We recounted tales of horrific mouth ulcers, of sickness, utter exhaustion, diarrhoea, unbelievable constipation, of the well-known hair loss – but why didn’t anyone ever tell us that it would actually hurt when the hair fell out? We talked about broken or lost finger and toe nails, of veins ruined by repeated treatments, of a loss or change in taste and smell (the distinctive smell of the chemo unit, something few can ever forget) and of going off foods and drinks we used to love; there were cases of sepsis and hospital admissions, of chemo induced heart problems and diabetes, weight gain or loss, skin rashes and irritations, eyes and noses that dripped like leaky taps, neuropathy and joint pain, which for many lasts years after chemo. There were headaches and mood swings, there was fear and loneliness, and so many more side effects that can debilitate even the fittest and most determined of us.

Lots of us coped with chemo by reminding ourselves that the benefits would outweigh the side effects and that “it’s just four more treatments” or “it’s just two more treatments”. Having that light at the end of the tunnel gave us hope and strength to carry on. Our members with secondary breast cancer don’t have that luxury. There is no end to treatment; they may be facing many years of chemo side effects and just thinking about that prospect is in itself exhausting.

Our members’ experiences of preparing for chemo varied, with some having lots of information ahead of treatment, honest answers to questions about side effects and good advice on how to treat them. Others were given a leaflet and told to expect hair loss and sickness, but not much else. We all agreed that having the right information prior to starting helps. We wanted to be told what to expect.

You will probably think you are dying at least once.

You will tell yourself you just can’t do another treatment.

You will consider stopping chemo to get some relief.

You will have days where you cannot get out of bed.

You might be a lucky one who suffers very little.

You will probably put on a brave face and people will tell you how well you are doing, even though you don’t feel it – and you will probably get fed up with people telling you your head is a lovely shape and it suits you having no hair!

You will sit up all night in a chemo/steroid induced insomnia.

Members commented that having the BRiC private group was a tremendous help, knowing there would be someone else up in the middle of the night to chat to, knowing there was someone else who’d had the exact same side effect and might know the best way to deal with it, and just knowing that you aren’t alone in what you are going through.

Many of us say we went into some kind of superwoman mode, some had no choice but to continue to work, we often tried to carry on as normal to shield our families from just how bad we really felt. Some of us discovered that trying to be superwoman was not such a good idea, as partners, colleagues and friends didn’t understand how gruelling the treatment really was and as a result had little sympathy when we needed to rest.

Along with practical ideas, like stocking up on ice lollies, laxatives, tasty food, comfy clothes, soft hats (who knew how cold a bald head can be?!), flip flops in case of sore toes, something to do/read during infusions which can take a long time - we often just wanted someone who could sit and listen, hold our hand and not expect anything from us, someone who would do the chores without being asked, who would entertain the children while we rested or bring us our favourite treat.

We did have some members who sailed through chemo with few of the nasty effects and without fail they said they felt extremely lucky. Chemotherapy kills billions of good cells in order to get at the cancerous ones, the overwhelming feeling was that chemo is a special kind of hell, a necessary evil, a war zone, something that isn’t “over” the minute you walk out of your final treatment, and something that not all hospitals prepare us for properly. Knowledge is power and knowing what to expect can help, even if it’s just in a small way.