You will need to find ways to hold on to your sanity when your usual activities are severely curtailed. An understanding listener can make a big difference when you need to express your frustrations, but you still need to find ways to pass the time and occupy your mind. Television or videos or radio might keep you entertained at first, but these can wear thin and you may start to feel too passive, as if you need more stimulation than a TV picture. What you need to find are pastimes which you enjoy but which are not too strenuous, which stave off frustration but which you can put aside immediately if you need to rest. The most simple pastimes can often be the most effective.
Reading is fine if you enjoy it and can concentrate. Books and glossy magazines tend to be expensive, but you can ask a friend or relative to visit the local libraries and charity shops as a cheaper alternative. If friends ask if they can bring you anything when they visit, a magazine might be a suitable present. If you find it difficult to concentrate or simply find it hard work to hold a book for long periods, you could try listening to books on tape, which are widely available at libraries. As well as books, a whole variety of television and radio programmes can be obtained on tape. If you don’t already own one, a personal stereo might be an extremely useful gift.
Listening to music can be therapeutic as well as pleasurable. Choose your music to suit your mood – sometimes loud, ‘angry’ music can provide a better release for your emotions than the more obvious calm and relaxing choices.
Writing letters, if you are able to, gives you the opportunity to keep people in touch with how you are and is sometimes an easier way of expressing your thoughts than a conversation. We are accustomed to using the phone rather than letters to maintain contact with family and friends, and you may feel, ‘What’s the point of writing when I can pick up the phone. Anyway, I haven’t written a personal letter since I was at school.’ It may take you a while to get started, but there’s a sense of satisfaction gained with signing off a letter. We all love to receive a personal letter, and you may find that people’s pleasure in hearing from you gives you a boost too.
Taking the theme of putting your thoughts on paper a step further, keeping a diary or journal of your experiences and thoughts during your treatment can provide another outlet for your emotions. It doesn’t have to be anything grand – perhaps a notebook in which you record notes of how your treatment is progressing, how you are feeling, the positive and negative sides of your experience.
Games are a good source of distraction and can help to keep your mind ticking over. Those which are not too long, intricate and involved are generally preferable, such as card games, backgammon or Scrabble. If your concentration levels are not brilliant or you have a tendency to become tired, these can be quickly started and easily put aside or picked up later.
Sometimes it’s useful to have an ongoing ‘project’ to give you a sense of purpose and to provide another thread of continuity in your life at a time of disruption. Try not to choose anything which will require constant physical effort, but ideally a project which can be picked up and put down whenever you wish. It might be something you had always promised yourself you would do ‘when you had the time’, or something completely new or something you have been meaning to return to for years. It will obviously depend on your particular interests as well as your physical capabilities: keeping a diary of your experience of cancer, cataloguing your record or CD collection, learning a new computer program, taking up sketching again, helping in some way with a cancer support group…. As well as helping you to feel that you are able to use your time resourcefully, you will have something tangible as an end result.
Alternatively, you might choose to plan forward for a project to be undertaken when your treatment is over – something constructive to look forward to. This could be connected with your house (plans for your garden or decorating); associated with work (the outline for an idea or project you have always wanted to develop but never had the time); or something entirely personal (choosing the destination for the holiday you plan to take after your treatment).
If you have (or if someone can arrange) access to one, a portable PC can open up new horizons. Whether you are accustomed to more sophisticated technology or have always been a technophobe, you can use it as a word processor, to play games or for whichever programs suit your needs and interests.
‘Treats’ can give you a boost too, even if they do suggest childhood. What they are depends entirely upon you; the point is that they represent something which is a luxury for you, even if a very small one. This might be something to eat or drink, a CD or record, a book or magazine, a game or gadget, an item of clothing. … It doesn’t need to cost much, but should make you feel good. Have regular treats – they are good for you! Make sure other people know about them, but don’t let them embarrass you by spending large sums of money or going to great trouble.
If you are well enough, avoiding being confined to home can make a difference to your state of mind. You may be content to spend more time than usual quietly at home, but gazing at the same four walls can leave you feeling stir-crazy after a relatively short time. Going out can also boost your self-assurance. If your mobility is not particularly affected, then this may be easy for you. If on the other hand, trips or visits need to be planned and depend on how you feel on a given day, then they can assume a greater significance. You might visit friends, or favourite old haunts or new places further afield. The location and purpose is less important than dispelling the sense that your life revolves entirely around your cancer. You do need other distractions in your mind, and ‘a change of scenery’ can help. Similarly, taking a holiday either during or after your treatment can provide a boost: even a break of a few days away can be very beneficial.
Having always led such a busy life, the enforced inaction of the first six weeks or so following my diagnosis were an alien concept to me – but at the time I was too ill to have any choice. After that initial period, I actually found to my surprise that I was enjoying having this ‘leisure’ time (although not the reason it was forced upon me!) and for the first time in years, I had time to call my own. It was also a period for reflection and reassessment of my priorities, but quite apart from that, I enjoyed being able to sit in the garden and read or write letters, have friends to visit, spend days on end at local cricket matches, go to my favourite record shops (going unaccompanied for the first time was a big day!), and spend time pottering around the countryside, going to places we’d always promised we’d visit ‘when we had the time’. Our finances were pretty stretched, but our lifestyle was not exactly extravagant at that time and our pleasures were generally simple ones. We saw this as a finite period, which would change again when my treatment was complete, so we thought we might as well make the most of it.
It is not only at home you will need ways to fill your time, but also in hospital if you are being treated as an in-patient. The same principles apply, although your days will be punctuated by your treatment, by drug rounds, ward rounds, mealtimes and so on. Even if the environment is busy and bustling and you have family and friends to pay regular visits, time can drag simply because you want to have your treatment as quickly as possible and get home again.
By my third or fourth chemotherapy cycle I was feeling much stronger and fitter and more like my ‘old’ self, and found I had to switch into what we called ‘hospital mode’ as soon as we walked through the hospital entrance. As an impatient person who likes to get on with things, I found the waiting around and the inevitable delays incredibly frustrating at first – it seemed they were occurring just to annoy me. This, of course, is not the case -blood tests had to be taken and the results checked, chemo had to be ordered, I had to wait for a doctor to be available to examine me, drugs had to be ordered from the pharmacy, sometimes scans had to be organized. All of these procedures take time. ‘Hospital mode’ involved switching off the active part of my brain, turning on the TV or radio or settling down with a good book and trying to be the patient person I definitely am not – but there’s no point in trying to fight the system. In fact, my three or four days often passed very quickly – but it didn’t always feel that way, and the only solution for me was to switch off completely.
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