'I've been to hell and back' Vicky writes after the first three months of her treatment. 'Cancer changes you,' she discovers. She finds, however, that the experience of being there, sharing her feelings and her knowledge with other patients, learning from them as they learn from her, is a powerful therapy. She knows she is crossing the divide - the doctor has become a patient and her life will never be the same again.
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ABOUT US > HISTORY > VICKY CLEMENT-JONES > LEARNING TO BE A PATIENTLearning To Be A Patient
'I've been to hell and back'
Vicky wrote these heartfelt words in the course of a long letter to her friend Alison, enclosing with it a photocopy of the diary notes she had made throughout this gruelling period because she wanted her friend to 'be there' with her - 'share in my despair and come up with me with my optimism'.
It was three months after her diagnosis. Nearly Christmas and she was alive! Weak and wobbly certainly, after enduring a punishing regimen of chemotherapy which had caused her to lose all her hair - an experience she found almost harder to bear than the drugs - but the wonderful news was that the tumour had shrunk sufficiently for an operation to be possible. It would mean having a hysterectomy as well which put paid to all hope of having children, but at least her doctors were now expressing a cautious optimism. There was some less palatable news too: they strongly advised her to undertake a follow-up course of chemotherapy to remove any microscopic residue of disease that might escape the surgeon's knife.
Vicky never refused any treatment, however radical, which was offered to her. She would take anything going which promised to keep her alive. Nonetheless, she had discovered that despite her medical training and former clinical experience of treating cancer patients, she was as vulnerable as anyone else when it came to dealing with her own illness. The pain and the sickness were hard enough to bear; the psychological trauma she felt was probably worse. She too, like other cancer patients, had been prey to irrational feelings and terrifying mood swings; hopes, fears, anger, despair; above all, a sense of desperation that her life was running out of control.
'Cancer changes you'
During these early months of her illness Vicky thought and wrote a lot about the effect the disease was having on her. Cancer patients reading this story will probably understand exactly what Vicky means when she writes in her diary: 'Who would have thought I could ever have said I was happy to have cancer?' in the middle of a passage describing her fear of the future. She realised that she was a changed person; no longer the competitive, ambitious young woman she had been before diagnosis.
Starting from a state of fear, confusion, anger, and sometimes denial, she had gradually grown to accept the reality of her situation. In the process she had become more relaxed, less inhibited. She could laugh at herself; she could also cry. The cancer had not changed her completely but it had brought out previously latent qualities in her. The cold breath of mortality had touched her and she knew she could never again recover the carefree confidence of her former life.
`I'm more emotional,' she wrote in another letter to Alison. 'I cry on an open ward with no qualms now and I think I must have hardened, but I can only see things as right or wrong towards what I feel is just and right, even if I am misguided. There is little else I can do from my sickbed except to influence others' lives for the good and I am not ashamed that I do it to my utmost.' At the time she was only thinking of her immediate family and friends. However, these words have a prophetic ring for the future.
Being there
Vicky learnt that it is possible to share experiences and feelings about your illness which are quite different from the facts you know intellectually. Cancer patients, she realised, had `been there'; they had been to a place unimaginable to those who have not made the journey. Patients understood things and could talk to each other and acquire information that the doctors and nurses were not even aware existed. She was to use this understanding as a guiding principle when she founded Cancerbackup.
Making friends with other patients on the ward had shown her that sharing a common experience in adversity created a bond and provided immense solace. She loved the idea that patients could help each other in practical ways, like the woman who showed her how to use old tights as a night time hairnet to stop falling hair covering her pillows and sheets, a handy tip which Vicky passed on in due course to others. For her part she was delighted if she could help them with the medical information, explaining what the doctor meant or suggesting further questions to ask. She realised that other patients were no different from her in that they, and often their relatives too, wanted to know what was going on, and why, if only to retain some measure of control over their lives.
Crossing the divide
As one who was both doctor and patient she threw herself across the divide that separates the two sides, offering herself as a bridge of communication, something she was to develop to a quite remarkable degree when Cancerbackup was in its stride. But at this early stage she only knew that she `needed to hear information repeatedly before it would sink in'.
However, her medical training did at least enable her to know what questions to ask and, almost as important, how to ask them. It made her realise how much more difficult it must be for people with no medical background to understand the often complicated reasons for a particular procedure, especially when delivered in a language so abstruse as almost to be a foreign tongue.
In time to come Vicky would speak extremely frankly about her cancer and what her illness had meant to her, often to strangers or to large groups of people - to the world indeed through her many media interviews and her own writing. There was, nonetheless, an innermost core of herself that very few people were allowed to know.
In this, as in so many other ways, Vicky was a fascinating paradox. She was reticent about her own feelings; she was, in particular, very concerned not to let people know about the extent of her physical pain and suffering. In view of all she endured later in her illness, her fortitude was quite extraordinary. Only those closest to her, the nurses and doctors who tended her and her very dear and near ones, knew the full depths she plumbed, the anguish and despair she suffered in her many dark nights of the soul.
Page last modified: 02 June 2006
