The Health Blog

We all enjoy spending time with friends and loved ones, and in any case, the stimulation of visitors can be beneficial. There will be times when you feel the need for almost constant support and companionship. If you are experiencing a ‘low’ period and feel anxious and vulnerable then the company of a loved one or a good friend is invaluable – how often do we admit in times of stress or crisis (although usually after the event) that ‘I couldn’t have got through it without X’? At other times you may prefer to be alone with your own thoughts or to go out on your own in order to feel more independent. Your needs will vary, and while it may not be possible for family and friends always to be with you when you need them, it is helpful if they can understand when and why you need them most.

If you live alone or your wife/partner works full-time, then you will need to devise ways to ensure you have sufficient company and support. Even if you are generally happy to be alone, it is important that you do not feel isolated and unable to ask for companionship when you need it. Picking up the phone and letting a friend or relative know that you’d appreciate a visit can be hard at first – there may be some sense of admission that you can’t manage on your own, which you find difficult. This is not, of course, the case – often, people are delighted to be asked, and flattered that you have chosen them. It is very important not to let pride stand in your way! If you do usually live alone, it is likely that hospital staff will insist on arrangements to be made for your support and care before you are able to go home after treatments. This is not because they do not trust you to look after yourself, but because side-effects and problems can be unpredictable, and it is in nobody’s interest not to take suitable precautions.

From a practical point of view, you may need more support than usual with everyday tasks which you have always undertaken without a second thought, such as preparing meals or getting around and out of the house. Treatment can have unexpected effects on your physical strength and stamina, and it is important to make sure that back-up is available when you need it. This doesn’t necessarily mean you need someone to look after you full-time, although one option is to ask a relative or friend to stay with you for a time. If this is not feasible or desirable, your district nurse can arrange to visit you at home each day, and Marie Curie or Macmillan nurses can offer more specialist nursing care if you need it. Your GP can visit to check that you are coping with your medications and any side-effects. An occupational therapist can also advise on any special equipment to make managing at home easier for you.

Arrangements for both emotional and practical support may need to be more structured if you live or spend most of your time alone and can’t rely on the presence of a wife or partner. You may have to make a more conscious effort to ensure that you have all the help you need – but this does not mean that you will manage any less effectively.

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Any step into unknown territory holds fears. Starting college or a new job, moving house and visiting the dentist all cause us a degree of fear either because we don’t know what to expect from the experience and/or because we anticipate that it will be unpleasant. Dealing with cancer is certainly a league ahead in terms of the intensity of our fears, but the root cause is the same: fear of the unknown. There are so many unknown factors involved that our security is profoundly threatened:

Will I be in pain?

What is the treatment like?

Will the treatment hurt?

Will the treatment work?

What does the future hold for me?

How will my family cope?

Will my life ever be ‘normal’ again?

How will I manage to get through this?

Becoming well-informed about your cancer and treatment can help to allay certain fears: the greater your knowledge and understanding of what is happening, the more control you can take and the less uncertainty you will feel about specific aspects of your disease or treatment. However, fear is not a logical emotion and a theoretical understanding will not always prevent you from worrying. It cannot necessarily help you with more general fears – about coping or about the future, for example.

One of the aspects of cancer and its treatment which causes most fear is uncertainty: uncertainty at how effective your treatment is and uncertainty at how much of your cancer will be eradicated. Waiting for the results of X-rays or blood tests, perhaps not hearing anything for several weeks between treatments, can cause great anxiety. You don’t know what to prepare yourself for or what plans to make, you can’t stop thinking about what might or might not happen. Tension is bound to build up, however much you try to take your mind off your cancer.

After the first awful month or six weeks, it was clear that I was responding well to my chemotherapy. Following so much bad news, this was more than we could have hoped for. But there was still a very long way to go and although my tumour markers were moving in the right direction, there was no guarantee that this would continue. We anticipated each hospital visit (weekly at this stage) with a mixture of unvoiced hope and stomach-turning trepidation. Butterflies? Legions of them, all on overtime. If the details were not immediately forthcoming, it took a huge effort of will to ask, ‘What are my tumour markers this week?’ or ‘What did the CT scan show?’

Apart from immediate fears about the possible unpleasantness of treatment, thinking about the future is likely to emerge as your single greatest fear. This can encompass a whole range of ideas, from ‘How will I manage to get through my treatment?’ to ‘Will I ever get better?’ At times when you are feeling physically low, you might wonder if you can bear to undergo any more treatment or how you can possibly tolerate the effects of your cancer any longer. How will you cope if you become physically incapacitated in some way? Who will look after you? How will you manage financially? Do you fear that your family and friends will eventually tire of supporting you and that you will feel a burden to them?

Fighting against cancer shakes the very foundations of your life, and it would be unusual not to experience fears that your life is toppling around you. These thought processes cannot be banished, but you can help to keep them in perspective by sharing them with someone you trust to take you seriously and listen. There may be times when you know your fears are irrational, but you need someone to take the time to talk them through with you. You may not expect solutions to your fears, but sharing them and knowing that someone you like and respect acknowledges and appreciates your worries can make them more bearable.

Just to hear someone say, ‘Of course you’re not being stupid! I can see now how difficult this is for you’ or T hadn’t appreciated until now how cancer takes over your life’ can be enormously helpful and will help you to realize that you don’t have to face your fears alone.

Sometimes a desire to express anxiety can be inhibited by a superstitious worry that voicing fears will somehow make them come true. For example, you are anxious that your treatment might not be as effective as you’d hoped, but you daren’t say so because you don’t want to ‘tempt fate’. We know this cannot happen but it can still make us hold back from saying all we want to. Even sharing this fear can help. Nobody will think you foolish: others are likely to admit to exactly the same worry.

If you spend a lot of time alone, your fears are more likely to become magnified. Similarly, if you are not sleeping well, fears can get out of control in the middle of the night. It would be foolish to pretend that they can be avoided completely, but it is important not to allow them to take over your mind. Sharing your worries will help. It is tempting to be ’strong’ and keep them to yourself, but the people around you will be aware of your state of mind and will want to help. It is, however, important to remember that there may be occasions when you simply prefer to maintain a ’stiff upper lip’. There are times when this can be an equally valid coping mechanism.

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In the early stages, you may feel that you simply don’t know what questions to ask about your cancer and treatment, beyond a general sense of ‘What’s going to happen to me?’ When your doctors ask you, ‘Do you have any questions?’ it can be difficult to know where to begin, and how to put your fears and queries into words without appearing foolish or stupid. Most people are starting from a base of no knowledge at all on the subject of their cancer, so it may be most constructive to begin with some very basic questions, which you can develop as your knowledge builds up. For example:

How do your doctors know that you have cancer?

What type of cancer do you have and how advanced is it?

How does it spread and how will it affect your body and the functioning of your organs?

What type of treatment is proposed?

How long is the treatment likely to take? (weeks? months?)

What is the hoped-for outcome of the treatment (although it is never possible for doctors to give guarantees)? Is a cure or substantial remission a possibility or is the treatment palliative (aiming to alleviate but not to cure)?

How will the progress of your treatment be measured?

Who is the doctor who will be in charge of your treatment? Are there any other doctors you will see on a regular basis?

Where will you receive your treatment? Will you have to stay in hospital?

Asking a few specific questions such as these will often help to prompt further information from your doctor. It is easy otherwise for a consultation to speed by before you feel sufficiently at ease to really start talking. Remember that you don’t have to talk in medical jargon, although you do need to be clear. It’s perfectly acceptable to say, “I have a sharp pain in my stomach’ – you are not expected to be able to perform self-diagnosis. On the other hand, it is helpful if you know the names and doses of any drugs you are taking (for pain relief, anti-nausea, etc), so that your doctor can check on their effectiveness and whether any prescriptions need to be changed. This is less daunting than it sounds, as you will be given a card containing details of your drugs, which should be kept up to date. It is much easier if you can discuss these by name rather than ‘the big pink capsules’ or ‘the little yellow pills’.

The question many people consider the most important – and the most difficult to ask – is on the subject of your future prognosis. In the past, a cancer diagnosis was an almost certain death sentence, and many people still make this association immediately on hearing their diagnosis. However, treatments have progressed tremendously in recent years, and it may be that your cancer can be treated effectively. This depends, of course, on your type of cancer, how advanced it is and how you as an individual respond to treatment. When you ask about your likely prognosis, your doctor may use terms whose meaning is not obvious to you, but which have a specific connotation in this context. These include ‘cure’, ‘remission’ and ‘relapse’.

•    Cure

A cure means that all evidence of your cancer has been eliminated completely and that it will not return. How this is assessed depends on the type of cancer in question. For example, testicular cancer tends to recur within five years, and most often within two or three. So if your initial treatment is successful and a period of five years passes in which no cancer is detected, you should be considered cured. Other cancers recur in different timescales, and your doctor will be able to advise you about this.

•    Remission

Remission means that the symptoms of your cancer have disappeared or lessened, i.e. that the cancer has got smaller. A partial remission means that the cancer has shrunk by at least half. A complete remission means that the evidence of your cancer has disappeared completely and it is no longer detectable. This is not the same as a cure, as the cancer may return in the future. If it does not return within a given timespan, you may be considered cured.

• Relapse/Recurrence

This means that following your treatment, some cancer cells still remained in your body and started to grow into a detectable cancer again. It may be that these remaining cancer cells were undetectable after your initial treatment but have become active again later. This can occur in the months after treatment has ended or may not happen for some years. Your doctors will advise you about the likelihood of a relapse occurring.

You might be eager to know about your chances of achieving a cure or substantial remission, but this may be tempered by a fear of hearing bad news – for example, that only a short period of remission is expected to be achieved by treatment. Your doctors may volunteer information about the anticipated success of your treatment, based both on statistical information and the specific details of your own case.

Another term you will hear doctors refer to is the ’stage’ of your cancer, which describes the extent, if any, to which it has spread to other parts of your body. There are four stages. Stage I means there is no spread and the cancer is confined to the primary site. Stage IV means that there is extensive spread beyond the primary site. Stages II and III fall between the two extremes.

Some people want to be kept fully informed about the progress of their treatment. You may decide, on the other hand, that you do not wish to be told too much medical detail about your cancer and treatment, especially at first. This is a very personal choice and is entirely your decision. Your doctors should be sensitive to this, although they do need to ensure that you understand what is happening during your treatment and afterwards.

It is worth remembering that while you will be looking for definitive answers to your questions, it may sometimes be difficult for your doctors to provide them. This does not mean that they are avoiding your questions, or that there are gaps in their knowledge. The treatment of cancer holds many uncertainties, and it would be wrong for doctors to be asked to provide guarantees about the future, although it is natural for you – and your family – to seek reassurance. It is useful to find out at an early stage which doctors you will have greatest contact with, so that you know who is likely to have the most knowledge about your case and is therefore in the best position to answer your questions.

In the very early stages, you may feel that you want to know as little about your cancer and treatment as possible and that additional information and knowledge are pointless because they can make no difference to your condition. This is a perfectly understandable reaction as you and your family try to come to terms with your diagnosis. As the initial shock recedes, however, you are likely to find that it is helpful to start learning a little more about your cancer. There are many books and leaflets available, covering a huge range of cancer-related topics. For some basic factual information, your hospital should be able to provide you with booklets produced by the organization BACUP (British Association of Cancer United Patients). These cover both specific cancers and related issues, such as cancer treatments and diet. Books and leaflets have a useful role as you can refer to them when you please.

If you are unclear about information you have received, you should never be afraid to ask your medical team for clarification. Similarly, don’t worry about asking the same questions more than once: when you are under stress, it is sometimes difficult to absorb information as easily as usual and your medical team will understand this.

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Radiotherapy is often given as an out-patient, if you are well enough to be at home and to travel each day to the hospital.

Planning is a very important part of radiotherapy treatment, to ensure that you receive the appropriate dose of radiation and that it is directed at exactly the right points on your body. Scans and X-rays will help your doctors to plan your treatment as these will assist doctors to establish the exact size and position of your tumour. Ink marks may be made on your skin where the radiation is to be directed, or if you are having radiotherapy to your head or neck region, then a see-through mould of the area may be constructed to keep your head absolutely still, and the ink markings will be made on this mould. The planning stage of your treatment may take some time and is likely to occupy the whole of your first appointment. It is tempting to feel impatient and natural to want to start the treatment as soon as possible. However, precise and careful planning is a vital stage of your treatment and cannot be rushed.

The dose of radiation you are to receive will be calculated precisely. It will then be split up into a number of smaller doses or ‘fractions’ which you will receive over a period of days or weeks, usually on Monday to Friday, with a recovery period at the weekend. The strength and number of doses will be tailored to your specific circumstances – your type of cancer and how advanced it is, and your general state of health must all be taken into consideration.

Various machines may be used to administer radiotherapy, either

from one or more fixed positions or while rotating around your body.

Before you have your treatment, you will be positioned very

carefully by the radiographers so that the radiation is directed at

exactly the right point. You may feel awkward if you have to hold a

slightly uncomfortable position, but the treatment itself is painless

and will take between a few seconds and a few minutes. In fact,

many people are surprised at how quickly the radiation treatment

itself is administered.

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Your own doctor or oncologist is the best person to answer detailed questions about your specific cancer. However, it can be very difficult to absorb medical information which is given to you verbally when you are feeling vulnerable and possibly very unwell. This section provides some basic details of the more common cancers which affect men, by their site of origin.

It looks first at the male-specific cancers which, by definition, affect only men and cannot affect women. Although they are not necessarily the cancers which affect the largest numbers of men (these are traditionally the lung and bowel cancers), they are the cancers for which men need to have an especial awareness, in the same way that women are especially aware of breast and cervical cancers. The other cancers included in this section are those which are statistically most prevalent amongst the male population. The different cancers are covered in the following order:

prostate cancer

testicular cancer

lung cancer

non-melanoma skin cancers

cancer of the urinary tract – kidney and bladder

cancer of the bowel – colon and rectum

stomach cancer

non-Hodgkin’s lymphoma

leukaemias

Please remember throughout this section that the facts given are necessarily brief and generalized and are intended to provide you with a first step towards understanding more about your cancer. Your doctor and oncologist will be able to give you more detailed information about your cancer and recommend further books or leaflets for you to read in your own time, if you feel this would be helpful. The British Association of Cancer United Patients (BACUP – tel: 0800 181 199 and 0171 613 2121) publishes a series of booklets on different cancers, treatments and related topics. These are available free to people with cancer. Don’t be afraid to ask if you ever feel you need more information.

The mainstream cancer treatments, which are by necessity mentioned here in relation to each of the cancers discussed, are covered in detail in Chapter 3.

A glossary of the more common medical terms which you may encounter is included at the end of the book.

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