Ringing the bell on chemotherapy

Tomorrow, all being well, I will receive my last round of chemotherapy. In many cancer centres, patients mark this moment by ringing a bell as they leave the chemo suite. It is definitely an achievement, a moment to celebrate.

At the start of this year I could probably have counted the things I knew - or thought I knew - about chemotherapy on one hand:

- it's a potent, systemic cancer treatment

- people having chemotherapy lose their hair

- it makes you feel ill

- it successfully kills cancer

Six months down the line, I now know that none of these (bar the first) are necessarily true. So I want to share what I have learnt these past few months - in the hope that if you or your loved ones are ever facing chemotherapy, my experiences might be helpful.

There are many of different types of chemotherapy, depending on your individual cancer diagnosis. For example, not all women with breast cancer will be offered the same chemotherapy, but rather it will depend on a combination of factors such as your cancer's particular traits, how advanced it is and whether is has spread. Some drugs are given every day over a short period, some over 4-8 sessions spaced several weeks apart, and others are administered over a far longer period. Some drugs are given intravenously, some orally.

Chemotherapy is given with one of three objectives. To cure the patient - given in the hope of ridding someone of disease completely by killing cancer cells. To control disease - given to shrink tumours prior to surgery, or for a patient with advanced cancer, given in an attempt to limit disease spread. As part of a palliative care programme - when cancer can no longer be controlled, chemotherapy may be given to alleviate symptoms and increase patient comfort.

Reactions to chemotherapy vary massively. I have met some people who have experienced very challenging side effects - sometimes leading to the total cessation of treatment - and others who have experienced no side effects at all. Whether you have side effects or not does not indicate that the drugs are or aren't working (although you will almost certainly ask yourself this at some stage in your treatment).

Chemotherapy is not what it was 20 years ago when many people did suffer debilitating side effects. In addition to chemotherapy drugs other medications are given to help prevent or minimise side effects such as nausea and sickness.

I haven't enjoyed chemotherapy (I guess that was never an option) and have had some pretty grim moments, but it has not come close to my worst fears. I count my blessings that I have got off comparatively lightly and do feel lucky to have been able to tolerate and finish my treatment programme. Not everyone does.

Chemotherapy is a blunt instrument. As well as taking out bad cells, it also damages good cells, especially those that divide quickly (hair follicles, the lining of your digestive tract - from end to end, skin and nails). It has done weird things to my body. It has made my pee smell like it belongs to someone else (you don't realise how familiar your own wee smells to you until it changes). It has made me fart a lot (chemo-farts are the stuff of legends). It had made the inside of my mouth hurt and my teeth taste weird. It has shredded the skin on my face and given me sore, raw hands and feet. It has made my nails go brown. It has, at times, made me feel relentlessly nauseous (but perversely stimulated an obsession for cookery programmes). Like a vampire, it has made me shun sunlight. It has made me bone weary.

You don't always lose weight on chemotherapy. I for one, have put on plenty - partly thanks to the drugs, partly due to a reduction in activity, partly because food is a way to counter gnawing fatigue and (for me) partly because, while I often can't work out what I might be able to stomach, eating reduces my nausea.

Chemotherapy and the supporting drugs can play havoc with your mind. The boom bust steroid rollercoaster became the nemesis of my treatment schedule. Chemo brain is a real thing - an encroaching brain fog that has you forgetting words, struggling to follow conversations and feeling easily overwhelmed at too much sensory input. Anticipatory nausea, a not uncommon psychological phenomenon where particular sights, smells or sounds experienced during chemotherapy (or even the thought of them) can provoke intense feelings of sickness, has ensured that I will never ever get beyond series 3 of Schitts Creek (see my blog Up Schitts Creek). Even hearing the first few bars of the title music now makes me feel perversely and physically sick.

There are innumerable ways in which you can support your body before, during and after chemotherapy, including nutritional support, exercise and stress reduction techniques such as meditation. These can help you to tolerate treatment better and reduce side effects, can potentially increase the efficacy of the treatment, and can help your body to recover faster following a course of treatment.

From the moment of diagnosis, you are bombarded with advice of things to try. Each suggestion is well intentioned, but collectively it can feel overwhelming, especially when you are still struggling to compute your basic diagnosis. What you choose to do with this is advice is very personal. Some will choose to ignore all of it, some will research every possible complementary (and alternative) treatment going, and others will fall somewhere in the middle. For me it was important to move at my own speed, and take things a step at a time. At the outset I simply did not have the headspace to do much other than focus on the conventional treatment. As time has gone by I have felt more able to take back some control, researching what's out there, seeking advice and sculpting a framework of complementary support that feels appropriate for me, practically and emotionally.

Chemotherapy is not always effective. In my particular circumstances, the boost to my potential 5 year survival rate from chemotherapy is less than 10%. But when faced with a serious diagnosis, even a 10% boost can feel like being thrown a life line. And, depending on your cancer type and profile, chemotherapy is often combined with other treatment regimes (surgery, radiotherapy, targeted therapies, immunotherapies) which together combine to help to deliver further improvements in prognosis.

But, despite the limitations of its effectiveness, chemotherapy can and does extend and save lives. Millions of people around the world have been able to complete school, graduate at university, travel the world, see their children grow up, fall in love or draw their pension thanks to chemotherapy.

We don't know if chemotherapy has cured me of disease, destroying all cancer cells lurking around my body. Only time will tell - we will see how things unfold in the coming weeks, months and hopefully years. If we have learnt anything from the last 18 months with Covid and my cancer diagnosis, it is that nothing in life is certain (except death). We can not know if my cancer will recur and if I will need chemo again in the future. I am hopeful that it won't, and I won't, but if I do, at least I will be better prepared for what to expect.

For now though, I am so relieved to be coming to the end of this challenging treatment programme, and will be quietly celebrating over the coming days (...side effects permitting). It feels really important to recognise this particular hard won milestone before moving on to the next phase of my treatment. It is definitely a moment to mark.

But I will not be 'ringing the bell' - literally or metaphorically.

Primarily because there is no bell in my cancer centre. Frankly, I am grateful for this - I find myself strangely resistant to this particular American import.

Also because I am not saying goodbye. I will be back in the chemo suite in three short weeks to start 8 months of a new targeted treatment and back in the cancer centre in four weeks for a month of daily radiotherapy. Although an important moment absolutely worthy of toasting, finishing chemotherapy feels for me a way marker on my cancer journey, not an end point.

And in part because I understand that for those with recurrent cancer, on their 4th, 5th or 6th programme of chemotherapy, or for those with incurable disease receiving palliative treatment, hearing each ring of the bell must cut to the quick.

But most of all because for me (and I can only speak for myself here - I get why others may choose to ring it long and hard), to ring the bell would be to make a very public declaration of hope. At this stage that feels, quite simply, like tempting fate.

And frankly, for now, I'd prefer not to disturb her.