Practice A Patient’s Journey

Cancer and chemotherapy

BMJ 2009; 339 doi: https://doi.org/10.1136/bmj.b2875 (Published 24 August 2009) Cite this as: BMJ 2009;339:b2875
  1. Ann V Salvage, patient1,
  2. Barry Quinn, oncology matron/lead chemotherapy nurse2
  1. 1London
  2. 2St George’s Hospital, London SW17 0QT
  1. Correspondence to: B Quinn barry.quinn{at}stgeorges.nhs.uk
  • Accepted 2 March 2009

Ann Salvage found that her journey through colon cancer and chemotherapy was characterised by irony and paradox. This is her story.

The irony is swiftly dealt with. Out of the blue, just as I was about to start analysing the results of my PhD study of palliative care nurses and their routes into hospice work, I was handed a diagnosis of advanced colon cancer. My interest in my PhD topic had arisen largely from my experience of the deaths from cancer of a higher number of “significant others” in my life than might have been expected for someone of my age (57). Suddenly, having believed that I was the one destined to accompany sick people, I now found that it was me who needed to be accompanied.

A speedy operation to remove the diseased section of my colon left me feeling better than I had for a long time. The anaemia that had alerted my gastroenterologist to the large tumour lurking at the intersection of my small and large bowels had been righted by a preoperative blood transfusion and its growth halted by the operation. Six weeks later, I began a six month course of adjuvant chemotherapy.

The paradox of chemotherapy

The paradox of chemotherapy is the fact, all too clear to most chemo patients, that to make you well it is first necessary to make you ill. Just before beginning my treatment, I attended a local school fete and chatted to an ex-neighbour, who had several friends who had had chemotherapy. “How are you feeling?” she asked. “Fine at the moment,” I smiled. She warned me that as I went through the treatment I probably wouldn’t continue to feel fine—in fact, I was likely to end up feeling pretty unwell. “Let’s hope not,” I said, though I’d been told by other people that chemo was not exactly a walk in the park.

My first couple of three week cycles of oxaliplatin and capecitabine were pretty unpleasant. During the first, I developed blisters on my feet that were so painful I couldn’t walk for three days. In the second, I had non-stop diarrhoea and had to stop the tablets a few days earlier than planned. At that point, my dosage of capecitabine was significantly reduced, and the symptoms abated to the point where I could get on with my life, at least to some extent. Throughout the process, I’ve had other troublesome side effects, including a very painful arm after intravenous treatment, peripheral neuropathy, and increasing fatigue.

Are you getting better?

When friends ask whether I am getting better I find it difficult to answer them. I understand that, as the cancer is part of me, extreme reactions by my body should signify extreme reactions by the cancer cells also. But when there have been delays in treatment as a result of side effects or low blood counts, I’ve been anxious that the unwelcome cells may get a respite from the bombardment and continue to grow. As my friend predicted, I’ve felt worse as the treatment has continued, to the point where I feel less well than I did after the operation and much worse than I did before it. I fully understand that to give me the best chance of being cancer free it’s been necessary to hit my body with drugs that have effects not only on the cancer cells but also on many of my normal cells as well. I hope that developments in drug treatment will eventually improve on this situation where patients have to be made ill in order to end up free of cancer. I was lucky not to lose my hair, and the nausea, which I’d been dreading, hardly affected me at all. Although the steroid drugs that I took to hold the nausea at bay caused severe insomnia, at least I was awake enough to have the night time inspiration to write this article.

Support along the way

On my cancer journey to date, my partner has been a very solid rock to cling to while I have floundered in a sea of uncertainty. The registrar we saw at the beginning of my chemotherapy treatment was wonderful—sympathetic, understanding, happy to spend as much time as we needed to answer our questions, and forthcoming with all the information we needed on the possible side effects of the drugs I was about to take. It was reassuring to know that a close check would be kept on me, with each cycle of treatment being contingent on the results of blood tests and the side effects I reported at my clinic appointments every three weeks.

When the registrar moved on to another post, I began to see another doctor, who, while no doubt an excellent clinician, unfortunately lacked the human touch and seemed unable to answer many of our questions (for example, about the statistics on outcomes associated with completion or non-completion of chemotherapy cycles—to us essential information on which to base decisions about whether I should complete the course).

Along the way, I have found Cancerbackup an excellent source of printed information (even at our initial meeting, the registrar gave me details from its website on the drugs I would be taking). I’ve had spiritual healing, have started meditating regularly, and have begun seeing the counsellor who works with cancer patients at the hospital I attended for my chemotherapy. My clinical nurse specialist was very helpful in the early stages of chemotherapy, advising on what action I should take when the side effects were especially bad; and the nurses on the chemotherapy ward were unfailingly efficient, encouraging, sympathetic, and caring.

Looking to the future

I started my eighth and final chemotherapy cycle in December 2008, and my partner and I performed a ritual burning of the drug boxes when I took the last tablet. This has not been an easy journey, but I remain confident that I will be able to regain the weight I’ve lost, get rid of the peripheral neuropathy that is significantly affecting my hands and feet, get back to the physical activities I enjoy so much, and within a few months return to full health and strength, cancer free and able to get on with my life.

I’ve learnt from the experience that I need to allow some relaxation into my life, which has tended to be a round of “must dos,” and listen to my body and treat it with greater respect.

My partner and I are both benefiting from regular meditation and looking forward to a special holiday in a few months’ time and to some further travelling once I have completed my PhD. A different way of living offers itself, and my cancer experience has by no means been an entirely negative one.

A clinician’s perspective

Ann’s story of moving from one who accompanies to one who needs accompanying gives us an insight into her personal story—one of the many that lie behind every diagnosis of cancer.

Although cancer is often associated with pain, the discomfort and distress that Ann and many others describe may arise from the treatments they have to undergo. Not every course of chemotherapy brings with it the discomfort that Ann describes, but her experience is not unusual. As she indicates, chemotherapy agents do not have the ability to distinguish between cancer and normal cells, and the side effects that Ann notes—the blisters, the diarrhoea, the neuropathy, the increasing fatigue, and the painful arm—all stem from this reality. Through a close working relationship, the oncology team and her general practitioner have an important role to play in reducing and treating these distressing side effects.

It is not unusual for chemotherapy to be delayed until blood counts recover, and yet, for many people like Ann, this can be a worrying time, carrying with it the fear that the break in treatment may give the cancer cells a chance to recover. It takes a knowledgeable and sensitive clinician to be attuned to these concerns and to take the time to give reassurance and support. Although medical treatment has gone a long way in reducing the side effects of anticancer treatments, some toxicity remains. Until we find a treatment that has the ability to target malignant cells (and the newer targeted ones have gone a long way in beginning to do just that), we will continue to balance the benefits of anticancer treatments with the toxicity they bring.

Ann reminds us of her need to be accompanied through her illness and treatment by the support she received from her partner, the healthcare team, and the healing and meditation practices she chooses for herself. As healthcare professionals, we could make ourselves more familiar with such practices in order to guide and support patients who seek the help that may lie beyond the medical model. Unfortunately, Ann’s story reminds us that sometimes we do not always get this right, and we may fail to support those we care for.

Cancer continues to be viewed negatively by the public and by some healthcare professionals. Part of this negativity stems from the uncertainty and the change that diagnosis and treatment may bring—and cancer’s close association with death. And yet through this personal story of cancer we hear how Ann and others find strength and meaning in the experience. Ann speaks of the positive changes she has made to her life and the goals she hopes to achieve.

The reality is that we who accompany have much to learn from those who ask us to support them through their illnesses. This requires clinical skills and expertise. Equally important, though, is that practitioners should take the time to show they care.

Barry Quinn, oncology matron/lead chemotherapy nurse

Useful resources

  • Cancerbackup and Macmillan Cancer Support (www.cancerbackup.org.uk, www.macmillan.org.uk)—Practical advice and support for cancer patients, their families, and carers. These two cancer charities have recently merged

  • Cancer Counselling Trust (www.cancercounselling.org.uk)—Free face to face and telephone counselling in the UK

  • American Cancer Society (www.cancer.org)—General information on most cancers

  • Cancer Council Australia (www.cancer.org.au)—General information, including cancer types, primary care resources, factsheets, and research

  • Institut National du Cancer (www.e-cancer.fr)—Information on cancer, including treatment, prevention, and research (France)

Notes

Cite this as: BMJ 2009;339:b2875

Footnotes

  • This is one of a series of occasional articles by patients about their experiences that offer lessons to doctors. The BMJ welcomes contributions to the series. Please contact Peter Lapsley (plapsley{at}bmj.com) for guidance

  • Competing interests: None declared.

  • Provenance and peer review: Not commissioned; not externally peer reviewed.

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