Anne in NSW had been taking 40mg of Lipex (simvastatin) for 18 months before she noticed any side effects. Her cholesterol had been 6.3mmol/L and she couldn’t get it down any lower with diet and exercise, so her doctor decided to put her on Lipex. The fact that Anne is a type 2 diabetic made her an even more suitable candidate for statin therapy according to her doctor. Anne has got a fatty liver, and her liver enzymes were elevated even before she started taking Lipex, yet her doctor still recommended she take it. Anne suffers with high blood pressure and takes Avapro 300, and has an under active thyroid, and takes Oroxine for this.

The first unusual symptoms Anne noticed were a feeling of nausea and what she described as “dead legs”; her legs felt extremely weak and heavy. She started sweating, developed pins and needles and felt overpoweringly ill. Anne assumed that she had come down with a virus.

A week later her legs became even weaker and she noticed that her arms were trembling. The nerves in her arms and legs tingled and she felt like she was on the verge of suffering an anxiety attack, even though she had never experienced that before. Anne commented that her hands trembled as though she had Parkinson’s disease.

Anne accidentally forgot to take Lipex for the next few days and started feeling better. She resumed the drug and the next morning felt incredibly weak, was trembling, shaking and sweating. The next thing she noticed, she could hardly stand. That was when Anne was taken to hospital. She underwent numerous tests which came up with nothing specific. Anne did not have an infection and her liver enzymes were still raised as previously. She was taken off Lipex, and then resumed it one last time, only to have all these symptoms return. Her doctors concluded that the only possible explanation for all of these symptoms was an adverse reaction to Lipex.

Anne was permanently taken off Lipex and the dose of her blood pressure tablet was reduced. It has now been one month since Anne discontinued Lipex, and she is slowly getting better. She used to walk 20 kilometers each week for exercise but cannot manage anything near this now; even going shopping is a strain on her legs. Anne still notices the occasional tremors in her hands.

The information leaflet inside a box of Lipex recommends it be used in people with diabetes, a history of stroke, or other blood vessel disease, regardless of their cholesterol level, in order to prolong their life. It is recommended that you do not take Lipex if you have a liver disease; Anne had a fatty liver yet she was still prescribed this medication. Paraesthesia is listed as a possible side effect of Lipex, this is a nervous system disorder whereby people experience burning, prickling or stinging sensations. Anne experienced an extreme case of an adverse drug reaction. She has now been placed on an appropriate eating plan with nutritional supplements, and day by day she is slowly recovering her health.

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The only constructive solution is to talk to those who can help -particularly the social workers at your hospital (if there are none at your hospital, ask your GP for a referral). If you are already experiencing problems paying your bills, do contact the organizations in question and explain your circumstances. It will often be possible to negotiate a solution or compromise, but you will have to take the first step. It may be tempting to ignore your financial commitments in the hope that they will somehow disappear – but this is rarely the case. It may feel particularly harsh, but with some help and your own resolve, reasonable solutions can often be found

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It is sensible to start by asking your doctor’s opinion about whether you are fit to work. Although it is difficult in many circumstances for a doctor to give a definitive answer, their advice will be useful when you discuss the issue with your employer. You may be advised to ease yourself back to work gently and to ensure you take sick leave if you are feeling low, or to start by working part-time. Alternatively, your doctor may advise you to stop working

until your treatment is completed or until you are physically stronger.

The next step is to talk to your employer to make sure no misunderstandings arise about whether or not you will be at work (or ask somebody to talk to your employer on your behalf). You may be unable to guarantee from day to day when you can work, and it is important that this is fully understood. It is even more important that you are not in a state of worry about work commitments – you need your energy for yourself.

For those fortunate to be in some form of paid work, perhaps the most critical decision is exactly what to do with this activity which has previously, probably, dominated your waking existence. The decision will vary dramatically between individuals -employed, self-employed, attitude of employer, full-time, part-time, etc – but for me the key decision was surprisingly easy. We were running a chartered accountancy practice which I had established some seven years earlier and there was never any doubt in either of our minds that we both had to stop working and use all energies available on the cancer. I think we both knew that this would, of course, make us much poorer – although I am not certain we then realized the full extent and link between illness and poverty – but that there was absolutely no alternative.

I was so, so lucky in one key aspect. I had formed a wonderful friendship and mutual professional support with a friend who ran a similar practice in Devon. Without a second thought, he came to see us and worked flat out for a fortnight to sell the business as quickly and profitably as possible. The end result was that within a fortnight of C-day and with the truly heroic efforts of my friend (and his wife ‘holding the fort’ at home) and the goodwill and integrity of the purchaser, the business was sold and we faced a future with a dramatically reduced income! Except that we had the time to deal with the cancer.

I know that this situation will only apply precisely to a very limited number of people, and that the level of horsetrading between employee and employer and the trade-off between income and time will be much more complex for most. All I would stress is that for us it was a great liberation to be free of the tyranny of time and resources which our work ate up. All efforts had to go into facing the cancer.

If you do decide or have to give up work, even for a relatively short time, you will obviously need to consider the financial implications. Money – or a lack of it – is one of the most common sources of stress. Anxieties about how to pay the mortgage next month or where the money for the electricity bill or the children’s school uniforms is coming from are the last thing you need – but at the same time are issues which can’t be avoided. If you do not have any other source of income, you need advice at an early stage about any benefits you are entitled to claim and whether you will be able to manage. These benefits are covered in more detail in Chapter 8. You may also feel great bitterness that your cancer has forced you into this position and created yet further problems. Your family might find this hard to accept too, resenting the situation while not wanting to add to your worries. Do get advice if you need it – a social worker will be available at your hospital who has experience of these issues. He or she can guide you through the system and save you time and energy.

For many of us, work occupies a significant proportion of our waking hours and an important position in our lives. It often dominates almost to the extent of defining who we are – when we are introduced to someone, one of the first topics of conversation is frequently, ‘Do you work?’ or ‘What do you do for a living?’ Even though you will be preoccupied with your cancer and treatment, giving up work can leave a void in your life. If you are at home, you will need to find ways of staving off the inevitable boredom, and making sure you don’t miss out on the social contact which work naturally provides. If it is physically possible, you might prefer to continue working at a reduced level to preserve some sense of normality in your life. Different people have different priorities and you, in consultation with your doctors, will need to decide what is right for you.

One man in his 30s being treated for stomach cancer who was employed by a bank continued to work whenever he could throughout his chemotherapy, with prearranged time off for his hospital treatment every three weeks. He felt that this would prevent him from ‘climbing the walls’ at home. He wasn’t always well enough to go to work, but preferred to do so whenever possible. Another in similar circumstances felt he needed to give up work for the duration of his treatment and convalescence, in order to concentrate solely on fighting his cancer. The decision might be made for you by your state of health or the nature of your job, but if not, try to decide what is best for you and not what other people expect of you.

If much of your life has revolved around work, it can be hard to conceive of such a dramatic change to your routine, let alone to admit that you are not always physically able to manage your job. In telling your employer and colleagues, you may fear that their perception of your capabilities will be affected or that they may not be entirely sympathetic about your cancer. Perhaps you feel determined to continue working at all costs, simply to prove that you can, or feel that you must from a sense of insecurity about your career prospects in the future.

The best policy is honesty with your employer. If your doctors have advised you that you will need time off for treatment, either occasional days or more prolonged periods, don’t imply that you will not need any sick leave. If your case is less clear-cut and you may need odd days off, make this clear. It will be easier for you and your colleagues to plan around your likely absences if you are explicit with them about what to expect. How you and they will cope with this will depend very much on the nature of your work. Maybe a colleague can cover for you on an ad hoc basis when necessary. If your work doesn’t allow for that, some careful forward planning of your workload will be needed, which will require you to be as open with your colleagues as possible. There is usually a means of resolving this, either by using temporary staff, delegating elsewhere or reallocating some of your work. Losing touch and getting left behind might be a fear – but perhaps you can arrange with colleagues to keep you up-to-date if you are absent for any length of time.

When you are not fully fit, even a job which is not physically demanding can leave you exhausted at the end of the day. Frustrating though it may be, this is a time when you must put yourself first and not the demands (or perceived demands) of your job. If you insist on working against medical advice or your better judgement just to prove that you can, you will find it even harder to maintain your physical strength – and you need it for yourself above all else.

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In many cases, you will also have to take the lead in talking about your cancer and treatment, as people can be reticent about asking for details, however much they want to know all that is happening to you. Most of us are very ignorant about cancer and its treatments until someone close to us is affected, and therefore we simply don’t know what questions to ask or how to start talking. Describing your cancer or talking about how your treatment works can be very beneficial in prompting questions. For example, most people who have not had contact with chemotherapy or radiotherapy find it impossible to visualize how the treatment is given, and are also unlikely to know what it is. They will probably feel too embarrassed to ask you such a basic question, so describing how it is administered and what it ‘looks like’ can help them to understand more about what you are going through.

However much you take pleasure in talking to your family and friends, don’t underestimate how emotionally tiring it can be to chat about your cancer. Remember that there will be times when you don’t feel like talking, and a hug or watching TV or listening to music or just sitting quietly with your companion is all you can manage. You don’t have to ‘entertain’ people, even if you do feel some responsibility to do so.

Feeling a need to be ‘strong’ for the benefit of others can be draining too. There will be times when you exaggerate how well you feel or how much energy you have so that others will worry less. After a gathering of friends or a family meal, for example, you may find you are exhausted from the effort of keeping up a strong front. You might look forward to a visit from a friend and feel you must be positive and cheerful so that they can enjoy the visit too, and aren’t left with an image of you as tired and unwell. We naturally want to feel that our family and friends enjoy our company, so we make a particular effort to be a good companion. Just don’t overdo it!

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Studies have shown that men are less likely than women to visit their GP when they fall ill. As a result, you may have had infrequent contact with doctors in the past, and be unaccustomed to discussing and managing ill-health and dealing with the medical profession. In spite of this, you not only have to cope with the news of your cancer diagnosis, but also learn about your disease, learn your way around the unfamiliar territory of hospitals and clinics, learn how to talk to unfamiliar doctors about even the most intimate and distressing aspects of your illness, learn about your proposed treatment, learn a new vocabulary of medical terms and jargon … It would be a lot to ask of any person in normal circumstances, and yet it is a process which you have to come to terms with in a very short time.

This sounds extremely daunting and the learning curve is a steep one, but there are simple ways in which you can begin to feel more involved in the management of your cancer rather than falling prey to the passivity which many male (and female) patients fear. The key to this is communication with your medical team.

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(and/or the lymph nodes) which then form the red and white blood cells. There are four main types of leukaemia:

chronic lymphocytic leukaemia (CLL) is a slow growing cancer of one type of white cell, the lymphocytes;

chronic granulocytic (or myeloid) leukaemia (CGL or CML) is a slow growing cancer of another type of white cell, the granulocytes;

acute lymphoblastic leukaemia (ALL) is a faster growing cancer of the lymphocytes;

acute myeloid leukaemia (AML) is a faster growing cancer of the granulocytes.

The lymphocytes and granulocytes are different types of white cell whose purpose is to help the body to fight infection. If your white cells are not working efficiently, then your body will have difficulty fighting off infections. The more acute forms of leukaemia produce very immature white cells which can be identified in the bloodstream.

It is important to be aware that the words ‘chronic’ and ‘acute’ refer to how quickly the cancer grows, not to how ‘bad’ the cancer is. Chronic types tend to affect adults more than children, and acute types children more than adults.

Chronic leukaemias may produce no symptoms at all for some time, as they are slow growing. All of the leukaemias are likely to be diagnosed by a blood test and possibly a bone marrow sample, with additional tests such as X-rays and scans to check whether any other organs are affected.

Chemotherapy is the mainstay of treatment in leukaemias. The type varies from simple tablets up to and including a requirement for bone marrow transplantation in some cases. Bone marrow transplantation is a very gruelling treatment, however, and your general medical condition will be important in deciding whether the benefits of the treatment outweigh the risks. Additionally, in some cases, chemicals need to be injected around the spinal cord and radiotherapy given to the brain.

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• Remember, no one is to blame. Assigning blame is always unproductive and often unjustified. Look to the future, not the past. Use your time and energy to get appropriate help solving the problem.

• Think in terms of we—not just he, or me. People who successfully overcome their difficulties work together as a team. They grow stronger as a couple as they confront and solve the problem.

Just examine Marianne’s story to find out how important these guidelines are.

Marianne, a 35-year-old personnel manager, has been happily married to Jack for almost a decade. If you asked her, she’d make no bones about describing herself as aggressive, smart and capable. She and Jack have had their ups and downs, but generally their marriage has been strong. Their friends call them a happy couple.

But their friends haven’t seen their private side. When Jack lost his ability to get an erection, Marianne felt threatened and blamed herself. Although she usually communicated well with her husband, she knew this subject upset him. Rather than make him more worried, she kept her feelings a secret for a long, painful time. The results were far-reaching. “I thought it was my fault—initially,” says Marianne. She had always been might mean the end of something important that she enjoyed, that also brought them close emotionally.

But in many ways, Marianne was fortunate. Jack, although hurting and depressed himself, was able to reach out to her and reassure her that she was not to blame for his difficulty, and that he still found her attractive and wanted her sexually. And Marianne had other responsibilities, like her job, that demanded much of her energy and prevented her from becoming obsessed with the sexual problem. And even though she was emotionally hurt, Marianne was determined not to let the erection difficulty create a barrier between her husband and herself. She made special efforts to let Jack know she cared about him and wanted to be physically close to him—intercourse or not.

Although Marianne was careful not to spend all of her time concentrating on the lack of potency, neither did she withdraw from her husband. She gave him plenty of affection and didn’t shy away from being physical with him.

And perhaps as important, she took an active role in getting help. She urged him to check whether there was a physical cause. As it turned out, tests showed that Jack did not have a physical cause for his lack of erection. What he did have was an overload of stress, anxiety and tension—feelings he had been keeping bottled up inside. Sex therapy turned out to be the right treatment.

Marianne’s openness and willingness to help were important to the sex therapy. She didn’t regard the erection problem as Jack’s alone, and she did not withdraw sexually. She examined her own expectations and beliefs. She worked to keep her tendency to blame herself from overwhelming her by encouraging her husband to seek a solution.

Marianne and Jack had a number of important things in their favor:

• They were very committed to each other.

• They had a history of a mutually satisfying and pleasurable sexual relationship,

• They made efforts to communicate with each other, although both felt bad.

• They sought help early on in the situation.

In short, they took an active stance instead of a passive approach.

Encouraging Jack to get an evaluation was a smart move on Marianne’s part. Sometimes knowing the cause makes it easier to cope with the problem, because it removes the stress of being in a state of limbo.

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Penile Shots

It seems frightening, but it works wonders: the penile shot. Sticking a needle in your penis to get an erection might not be as romantic as a candlelit dinner and a snapping fire, but some men with potency problems are finding that the shots boost their sex lives. Once they learn the technique, they can use the injections at home when they want to make love.

Your reaction to even the thought of an injection in your penis is probably to shrink back. But really, there’s notvery much to worry about. Men report that the injection doesn’t hurt any more than any other type of shot—and the pain doesn’t last.

The needle is so small—about three quarters of an inch long and quite skinny—that the initial jab itself isn’t very painful. The needle is inserted into the side of the penis, about midway along the length of the organ. There is a slight burning sensation when the medicine is injected, but it quickly disappears.

The drug injected will usually be papaverine, or a combination of papaverine and phentolamine. These medications dilate the arteries in the penis, thereby increasing the blood flow to the organ. In addition, it appears that papaverine dilates the sinuses within the penis where the blood is trapped during an erection. Dilation of the sinuses compresses the veins so there’s less blood leaving the penis.

And a man with a papaverine erection won’t lose it when he ejaculates, because the drug will keep working. The man will still feel pleasure and may be able to ejaculate again, although the ejaculation might seem less intense. The erection will subside only as the medicine gradually leaves the penis and disperses throughout the body.

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Inserting a foreign object into your penis will not produce an erection, but we can almost guarantee it will produce pain and soreness. Sometimes the object prevents a man from urinating, which can be a very dangerous situation. And for some unfortunate individuals, permanent injury to the penis results from infection or damage caused when the object is finally removed.

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Suddenly, Joe is demoted at work, and his hours are cut. His paycheck suffers a huge reduction. Although the change at work isn’t Joe’s fault, and lots of other employees are similarly affected, Joe’s sense of self-worth is shot full of holes. He feels like less of a man.

Joe doesn’t tell his wife about the change in his situation and how bad it makes him feel. Without a word, he just cuts back on the amount he contributes to the family budget. He feels embarrassed, ashamed and guilty about his reduced participation, and he withdraws as much as possible. He doesn’t talk much to Mary. He refuses social invitations. He becomes quite depressed.

Naturally Mary reacts by worrying about the reduced household budget. Although she is filled with questions—Is Joe spending his money on someone else? Did he lose his job, or get reduced hours at work? Does he feel less love for her, and thus want to contribute less?—she is afraid to ask them.

Joe deals with Mary’s silence with his own set of unspoken questions. How is she coping with less money? Doesn’t she mind? Is she making up the difference by getting more money from someone else?

If this tension and anxiety increase and the situation is allowed to continue, it will develop a life of its own, with each partner attributing negative motives and feelings to the other. The once-positive relationship Joe and Mary enjoyed will be poisoned by their imaginations. But this does not have to happen. Simple questions and answers spoken early on, coupled with warmth and support, can break this communications deadlock. Joe and Mary can decide what they want to do about the change in their finances—together. The same applies to potency problems.

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